Narcoleptic Knights

Many Main Man Moves

2011-03-10T12:50:00.001-06:00

Greetings all! I have been absent from blogging for nearly a year, and it turns out that my blog site (Bite Size Life) no longer is functional. Thus, I have relocated to Wordpress.com. My new address is www.narcolepticknights.wordpress.com. I hope you will consider visiting me there. To those of you who read my site regularly, I apologize for my prolonged departure. Those of you who are PWNs likely get how life can completely shift on you, and suddenly things are out of control. As I did with the Bite Size Life incarnation of this blog, I will feed the five most recent posts back here. Thanks for checking out my thoughts about life with narcolepsy. Thanks from Main Man!

Bite Size Blogging

2009-10-23T10:50:00.000-05:00

Apparently, today is moving day! As I mentioned in my previous post, Bite Size Life is a promising, new location on the web for narcolepsy support. I have been intending for sometime to get my blog transferred there, but the stars refused to align. Suddenly, as so often happens in my life, everything came together within an hour of my previous post. Thus, Narcoleptic Knights can now be found at www.narcolepticknights.bitesizelife.com. Hopefully, I am bright enough that I can continue to have the posts I write there, show up here too. The good news is that ALL of my Blogger posts are already on the bitesizelife. com site! Hooray! I do hope that this change does not cause major problems, but I am excited for a new adventure. Also, I am more determined than ever to provide some live blogging from the Narcolepsy Network conference. Cheers!

Jetting to Jacksonville

2009-10-23T07:09:00.004-05:00

I awoke this morning in a huge hotel room. The national Narcolepsy Network patient conference begins today in Jacksonville, Florida; I arrived late last night (technically, early this morning). While I remain uneasy about being here, I must confess that my beautiful view of the Saint John's River certainly makes me glad for the break from my daily grind. I also know that I will enjoy many aspects of the conference. Hopefully, I deepen some of the friendships with other PWNs that I began at last year's conference. And, many new PWNs await me as well.

At the same time I could not help feeling loss and regret as I ate during my layover in Atlanta. More than anything, I want to help and connect with other PWNs. While this blog does that, my primary outlet for the past year has been the Narcolepsy Network forums. At least it was until mid-September. I deeply believe that the work of some dear friends in those forums is a huge reason for Narcolepsy Network's recent upswing in membership. Certainly, the number of people using the forums exploded during the last year, but I also know that Narcolepsy Network saw tremendous growth in paid memberships during that time as well. Unfortunately, the people most responsible for making the forums a welcoming and safe place for PWNs will not be with at this conference, nor do they oversee the forums any longer. I remain utterly bewildered as to how the people running Narcolepsy Network could be so obtuse as to not understand the vital role that those forums and individuals have played in the organizations sudden expansion.

The crux of it all for me is that I see the internet as a PWN's most vital tool. Few of us are able to find doctors who truly understand our condition. Although many larger areas do have local support groups, most PWNs need far more connection than a few meetings a year can give. Those factors, added to the reality that many PWNs literally know no one who has their condition until they find a support group (if they can find one), mean that the internet is the one location that a PWN can interact with other PWNs on a consistent basis. Up until mid-September, I would have believe that such a reality was obvious to everyone associated with Narcolepsy Network. Now, though, I have serious doubts.

My experience at last year's national conference was incredible. Certainly, being some place where I knew that 300 other people truly "understood" narcolepsy was a primary component of my joy, but far more significant was meeting face-to-face with many of the people that I had meet online. I am guessing that I will have a similar reaction this year. But, what vexes me to no end is that I doubt that other PWNs will get to have that opportunity in years to come. Since things changed on the Narcolepsy Network forums, I do not see the same level of interaction and vitality there. In fact, it is strange to see that in August the forums were adding 20 new members within 2 to 3 days, but now it might take a week or more to add 20 people. My observation is not researched or vetted, but it definitely seems like the energy in the forums is diminishing.

Clearly, I would love to see my friends back running the Narcolepsy Network forums, but deeper than that I honestly saw those forums as a way to improve significantly life for other PWNs. So many of us struggle to interact with the world because our enery is so limited. But, going online takes far less effort, and one need not drive somewhere to do it. I left my position as a moderator on the forums because of the way my friends had been treated, but I also did it because I did not (and still do not) trust the decision-making of the current board when it comes to Narcolepsy Network's online presence. If they honestly had no idea how active and energetic their forums were, it is a sad reality. Certainly, many other online support groups for narcolepsy exist, but Narcolepsy Network's advantage was (and still is if someone can right the ship) that they are a federally recognized non-profit with a national convention. Adding a strong and lively online community to that would make them the best resource anywhere for people with narcolepsy. Now, I wonder what will happen.

Of course, I could be crazy. Narcolepsy Network might have thrived in the past year due to some other reason. Only time will tell. Also, the other support groups, particularly the Facebook Narcolepsy Support Group and a new site Bite Size Life, might adequately fill any void created by the changes at Narcolepsy Network's forums. Another definite possibility is a group in Second Life called Slumber Society. In the end, though, I need something for me. Selfishly (which I need to make a priority more often for myself), I need to find something that will give me the same fulfillment that my moderating on the Narcolepsy Network forums. Yes, I could "ask" to become a moderator for Narcolepsy Network again, but I will not work for the people currently "in charge" of the forums. As far as I am concerned, they haven't a clue about running a forum effectively. I also know that I can't afford to put in the energy that I did over the past year only to have it ripped away again. Thus, I find myself in limbo. I need to help other PWNs; it is something I do well. But, I also am struggling with my own energy so much that I do not have the time to figure out where to put my (currently non-existent) "narcolepsy support" energy. Time will eventually guide me in the correct direction, and I have learned enough to allow myself to trust the process. Unfortunately, that does not lighten my current mood, nor does it mitigate the hurt that I still feel from the events in September. Still, I know this chapter is just one more lesson that narcolepsy has for me to learn.

Regularly Random Routine

2009-10-20T22:48:00.002-05:00

One thing I know helps me is a set routine. Unfortunately, I do not feel like that has happened since the previous school year ended. I have come to expect that my summers will be all over the place. Because I teach an intensive creative writing course and then we travel, summer tends to be an unending cascade of starts and stops. Since my profession allows me two and a half months of unpaid vacation, I usually handle the rudderless aspect of June, July, and August as well as I can. Usually, though, the arrival of September affords me the blessing of a fairly standard daily schedule. For some reason I have yet to find that rhythm this year.

Certainly, the crazy weekends that took place for my family in September exacerbated the situation, but it goes well beyond that. For the first time that I can remember, I had more of a pattern to my day in August than I do right now. Rather than getting easier, my days seem to be growing in complexity. I have no doubt that much of that is in my head and in my reaction to my narcolepsy. Nonetheless, my days feel much more fragmented. I am weathering them well, partly because I have come to accept the reality that I have a disability. Still, I find my anger and frustration rising to the surface far more often of late. I also know that my depression seems to be growing in strength lately. I also find it difficult to "be hopefully" while also "accepting my realities." As always life and narcolepsy seem to be a paradoxical and oxymoronic as the title of this post!

Excessive Exhaustion

2009-10-19T21:36:00.003-05:00

Although I seem to be handling my struggles better, I find it infuriating that my narcolepsy seems worse than ever. I know that my condition moves in cycles, and I am clearly in a down turn at this time. Still, getting up in the morning is more difficult, and my evening peter out far sooner than they did last year. I am scared that narcolepsy is progressive. I realize that my amphetamine dose is likely less effective, but I also doubt that the drug's impact has curtailed to the extent that I am once again experiencing fogginess in my thinking and the possibility of micro-naps. Even today, my drive home from school felt much closer to the automatic behavior rides I remember from my pre-diagnosis days.

Adding to my concern is that I am at a loss as to where I should turn medically. Since my sleep doctor did not even both to come into the room during my last visit, I doubt he will be much help. While he definitely understands the basics of narcolepsy, he is a pulmonary doctor whose true focus is obstructive sleep apnea. What I need is a neurologist who is well versed in sleep. Sadly, such physicians are few and far between. The "premier" group in the Minneapolis and Saint Paul area apparently has a narrow view of narcolepsy. If you are not text book, then you do NOT have narcolepsy. Since I am functioning less well on my current medicinal routine, I highly doubt that "losing" my diagnosis would do me much good. I boggles my mind that I am NOT going to a doctor because I am afraid that the doctor might tell me I do not have narcolepsy. I KNOW that I have narcolepsy, but the fact that I personally have talked to people who have been to this group worries me enough that I am not going to take the risk.

In many ways my current situation underscores the ridiculous reality that far too many PWNs face - we have a disease that does not "fit" in the contemporary structure of medicine. Most specials focus on a specific body system, but sleep medicine covers an enormous range. Obstructive sleep apnea alone involves the throat, the lungs, the brain, and even the heart and other organs when untreated. So, one can find sleep doctors who are ENTs, pulmonary specialists, neurologists, and even cardiovascular physicians. And, the essential mechanism of OSA is fairly well understood. Narcolepsy on the other hand is an autoimmune disease in which an environmental trigger has caused a genetic predisposition to activate, resulting in the body attacking small cells in the hypothalamus. Thus, those same sleep doctors who treat OSA periodically get PWNs as patients. But, few of them understand narcolepsy (which is still in its infancy in terms of medical insight). The situation only worsens when one realizes that the limited number of PWNs and the extreme nature of our drugs (class II stimulants and sleep aides like sodium oxybate) provide little to no financial incentive for any doctor considering sleep as a primary area of interest. The one small ray of hope is that the recent discovers about narcolepsy may spark significant interest among immunologists - now that it is clear that narcolepsy is an autoimmune disease.

None of that rambling helps my overly sleepy state, however. I remain proud of myself for accepting my situation and for pushing ahead with the best attitude that I can muster. Nonetheless, I abhor that mowing my small lawn today completely did me in. That comes on the heels of a Saturday and Sunday that saw me accomplish little because I was drained from talking to my wife and from confronting another parent. All of that happened on Saturday, but I needed all of Sunday to recover. In fact, I would argue that some of my current lethargy is also linked to my mental and emotional exertion on Saturday. While I know that I am doing the best that I can, the rational side of my brain is screaming about how pathetic the reality is. Yet, I have no choice, but to breath and to accept my disability.

I am looking forward to the Narcolepsy Network conference this weekend. While my relationship with the organization feels shaky at this time, I am thrilled to be going somewhere where my "norm" IS the "norm." Sitting in a room, or even having a casual conversation with a fellow PWN, is tremendously empowering. It reminds me that I am not insane. It also underscores for me that this disease is awful, and yet it is also manageable. Granted, I need to keep working to accept my limits, but I can be productive even with narcolepsy impeding me much of the time.

Tired and Troubled

2009-10-18T14:35:00.002-05:00

Somehow, I have managed to let another month pass without posting. Writing about this crazy condition is vitally important to me, but the "basics" of my life have felt horribly overwhelming. I also think that either my narcolepsy is intensifying, or my amphetamine is diminishing in its impact. of course, there is actually no way to determine that. All I know is that I have continued to "cut back" what I do, and I still find it harder to do this lightened load - which I find horribly frustrating.

My school year is actually going well. I have been better about correcting and more prepared for my teaching. I am also doing a better job of limiting myself to my part-time hours, rather than spending excessive amounts of time at school (well outside of my contract time). That being said, the year has also been tremendously draining. Our teaching team was tremendously successful last year, but I think we are all feeling pressure to be "better." While I think we are doing that, we are putting stress on ourselves. We have also developed a new approach to homework. It works well for many of our students, but two groups are struggling. Our students with poor time management skills are not spacing out their work and turn in poorly done materials. On the other hand, our overachieving students have been trying to do two to three hours of homework each night. Our expectation is that student would spend two to three hours maximum per week. As a result, we faced a number of questions at conferences from parents and guardians. Thankfully, most of them accepted our explanation, but a few still felt like we should change what we are doing because their daughter or son was continuing to do two to three hours per night. I am empathetic, but fail to see how we are causing the problem.

The other thing contributing to my struggles is the bizarre course of events over the last two months in my house. Our September had more activities and events that I can ever remember us having. The worst weekend involved my wife getting me at school at 2:45 PM on a Friday. We spent the next three hours and thirteen minutes traveling to Duluth (a trip that should take about two hours). We arrived for a family wedding with two minutes to spare (literally). Then, we checked into the hotel and attended the reception. I then got up early the next morning to drive my daughter back to the Saint Paul for a voice lesson. It was her first lesson, and the directions given by the organization were flawed to say the least. We managed to arrive only two minutes late for the voice lesson, but the stress of it all buried me. My wife had stayed in Duluth. When she returned on Sunday, I was still recovering, but there was a tremendous amount of work that needed to be done. I pushed myself to do it, and I exploded at my family. Then, I got to school on Monday so exhausted that my team members sent me home. It has been rocky since then, but is finally beginning to level out.

In the midst of all of that, my relationship with Narcolepsy Network turned markedly sour. They let their web master go and cut those of us who were moderators from access to the primary tool that we used to help moderate the site. When I emailed to express my disappointment in the entire situation, I received two emails. One was heartfelt and personal, explaining that I was a valued resource. The other was a generic message to all of the current moderators, saying essentially the same thing. Unfortunately for Narcolepsy Network, they thought the first version of the generic message to me did not work, and thus they forwarded the template. Because of that I learned that they had sent the same message to two moderators who had done nothing for over six months. Both of those individuals had been alienated by the inaction and the rude comments of board members. I then wrote an even more terse email questioning how they could "value" my work when they clearly had no idea what moderators were active and which were not. The sad reality is that many of the board members STILL have not gone to the forums, even after the things that took place. As a result of it all, I have done little online posting - at Narcolepsy Network or on Facebook. I am even struggling to do work for my local support group (which I essentially help to run). I just hate the idea of spending hours working on things, only to have some uninformed baord member swoop in and yank it away. Much of my frustration with the Narcolepsy Network centers on a new website that the web master was developing. He had is essentially ready to go live last November, but the board would never approve it. I personally spent well over 20 to 30 hours writing and editing content for the site, but never heard anything from the board, particularly the ones who were supposed to be overseeing the site. The even more irritating part is that while the new site was constantly being labeled as "un-ready," the current Narcolepsy Network site was live and contained far more errors and inaccuracies than the "un-ready" site. Because the web master is my friend, I stuck with the process, hoping that we would eventually be given approval. Instead, they fired him. Certainly, there may be legitimate reasons for what they did, although I have serious doubts. Even more unbelievable is that after hearing nothing about my work for the site, or about the quality of my writing, I received praise from three board members and a couple of employees of Narcolepsy Network.

I still want to "help" others with narcolepsy, but my own struggles are making it hard. I am heading to the national convention for Narcolepsy Network at the end of this week. I do plan to touch base with one member of the board to see if I can learn more about everything that happened. At the same time I remain unimpressed by the things I continue to see from Narcolepsy Network. For instance, even though I have clearly stated that I am not "helping" them at this time, I am STILL receiving emails from the people planning the conference. Today's series of emails was wonderfully ironic. Since all of the forum moderators "resigned" (after we were cut off), the board is hoping to find "motivated moderators" for the forums. Someone came up with the line, "We want MM for NN" - with "MM" refering to "motivated moderators." Since my initials ARE MM, I was sorely tempted to respond to the email, "You had MM, but chose to get rid of him," but felt like it would be sour grapes. In the end, it drives me crazy that the one national organization for people with narcolepsy seems to be clueless when it comes to growing the organization and to helping the vast number of PWNs who are searching for a lifeline while they are online.

Missing Month

2009-09-13T22:05:00.002-05:00

Somehow, I managed to write nothing in my blog for over a month. While the vacation did require some post-trip recovery, a number of other things contributed to my disappearance. First and foremost, the lovely world of Wii sucked me into it. My daughter's purchase of Animal Crossing has definitely been a curse and a blessing. I love the game and have been quite successful, but WOW does it suck up time. Beyond that, I have been attempting to get back into some type of rhythm because I have already experienced two weeks of teaching. Certainly, doing my best to prep for the start of school also ate up time. Our strategic planning process was fascinating this summer, but taxed me beyond belief. More than anything, I have had a difficult time maintaining a consistent level of energy. On that note, I must get into bed. I actually had three nights in a row at the end of last week when I took only one dose of Xyrem. Such situations will not get me back into a regular routine anytime soon.

Before I go, though, I need to acknowledge to things. One, I have had a difficult and trying weekend due to moronic decisions made by the board of Narcolepsy Network. I will be attending their national conference in October, but sadly my relationship with them is likely ending. I have no doubt that I will blog about that soon. More importantly, I made a new friend on Facebook today. She actually knew me from Narcolepsy Network's forums, but we had never exchanged direct messages before. She shared some wonderful compliments with me, particularly that my blog had helped her when she was initially diagnosed. Although I had been working up the energy to get back to my writing, that interaction spurred me to post this. I love how PWNs can do so much for each other in such simple ways.

Happy Homecoming

2009-08-09T22:51:00.003-05:00

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language - in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances - poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can't remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day "off." I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend's house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to "goof off" with her even as I get myself into school mode.

Travel Tension

2009-08-08T19:26:00.002-05:00

On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM - a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.

The problem, though, was that due to my wife's illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.

Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.

When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to "help" me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.

I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.

Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane - in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.

Craft Craze

2009-08-07T18:42:00.003-05:00

I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like a pound of powdered sugar!). Then, we headed east for the eight mile artisan loop. Since it was hot, we knew that we could not go to many places, but we did check out a few shops.

The woodwork and art that we found blew my mind. I am glad that we made the trip because I will now push harder to make it a priority the next time that we come here. Gatlinburg has amazing talent in this eight mile loop. We did make a few purchases, but I was tempted to get far more. Wisely, I realized that my wife would need to okay the larger purchases. It simply means that we need to return here again.

The best part of the day, though, was simply getting out. My sinuses definitely seemed to be better today. I felt good being more alert and having the chance to connect with my daughter. I continue to worry that narcolepsy will prevent me from knowing as well as I might. Gratefully, days like today remind me that I can find windows. I am excited to head home, but feel like I had a great vacation inspite of my medical woes. We have already packed most of our stuff, allowing us to plan for a 6 AM departure. I hope that I can be ready since I was the delay on both days of our driving down here. Tomorrow is definitely the "longer" day, but we should hit our worst stretch (Pigeon Forge - 5 miles in one hour) before anyone else is actually awake. We will stay in northern Indiana again, but booked a hotel slightly closer to Chicago. I like that I am ending this trip on an upbeat note. That has not been my previous experience very often.

Slow Startup

2009-08-07T07:49:00.002-05:00

Today is our last day in Tennessee. We will rise early tomorrow and hit the road. While I am not looking forward to two days in a car, I am looking forward to getting back home. I feel good that I still have two weeks before I am back at school. I have oodles of things to do - at home and for school, but I will continue to approach them at the pace that I can handle. Today definitely feels similar to that. My wife went on a driving loop last night by herself. She enjoyed it immensely, but came home even sicker than she was. Thus, I am the only one up this morning. Hopefully, we will still try to visit some of the craft shops today, but I love that we can have such a relaxed start to our "final day." Far too often, a day like this is treated frenetically, cramming in activities for each waking moment. Instead, we will take in what we can and simply appreciate the chance to spend time together.

I find myself grateful for the many opportunities to slow down my life and expectations. My brain continues to push me, but I am getting better at letting go. I am even able to appreciate the fleeting moments when I do achieve a level of balance. Those moments are not nearly as frequent as I would like, but the fact that success brings joy rather than regret is a huge improvement. For years, a moment of serenity would bring angst rather than relief. I would berate myself for my inability to "feel serene" more often - how screwed up is that? Thus, I am highly content to lounge this morning, at peace with my upbeat outlook.

That said, I do need to find a bit more structure to my days when I get back home. The start of school is still three weeks away, but I need to begin adapting my schedule and routine now, since I know that a radical shift will not sit well with my brain or physical health. I also need to find a physical routine. The hiking and rafting has been great, but my body hurts all over as a result. More than anything else, I need to strengthen my knees. They are hurting constantly these days. I must spend some time over the next three weeks to get them ready for standing frequently during the school day. If I don't, it will be a LONG year. I find juggling exercise, my family, my sanity, and my job one of the most frustrating aspects of narcolepsy. All of them take energy from me, but all of them are vitally necessary.

Internet Interruption

2009-08-06T19:31:00.003-05:00

I love that I am constantly learning new things about myself. While a portion of that statement is facetious, I do like that I am open enough to recognize important factors about my mental and physical health. So, we are on vacation. Gatlinburg has been great, but my sinuses has not. I am also furious that my resort DOES offer an internet connection, but for a fee. I realized this after returning from McDonald's on Sunday. My rage only increased when I learned that the resort's internet is provided by Wayport. While Wayport has been around for a while, apparently the company is now owned by AT&T. The irony is that I am supposed to be able to connect to AT&T wifi because of my own internet connection at home. In fact, I used the Wayport connection at McDonald's! I finally caved in and paid for 24 hours on our room connection. I needed to do that.

My health woes have made for a long week, but it has also been hard because I don't do well when I have "unstructured" time. We have done some hiking, gone white water rafting, and visited the Aquarium of the Smokies. Those activities have been awesome. Unfortunately, those things drained me (because I have narcolepsy) and left me sitting around our townhouse at the resort. When I don't have ways to distract myself, I tend to get stuck in my own head. To avoid that I have watched a ridiculous amount of TV. I would have done far more productive things had I had an internet connection, but that was not possible. I also knew that trying to DO other things would be a disaster, since my limited excursions have left me wiped out. That might be the most frustrating aspect of this. This trip is the first long one that we have taken since I have begun to figure out how to live effectively with my narcolepsy. Unfortunately, I was not prepared for it. The lack of the internet connection, coupled with how much two LONG days in the car took out of me, has made it difficult for me to be upbeat. I also know that I am bring down the moods of my wife and my daughter. We are having fun, but my limited participation certainly impacts them.

I am now in hour 30 of a killer sinus headache too. It improves at times, but on the whole, the dull and constant pain in my left temple is getting old (to say the least). I skipped the hike this morning in hopes that I would feel better, but it made no difference. I am also afraid that I will get worse when we spend two days in the car driving home. Hopefully, tomorrow will be a good day. We plan to visit some of the shops on the craft circle - an eight mile loop of various artisans. It should be a blast, but all of us are under the weather. We certainly will not push ourselves, but it is definitely a burden on my wife. She clearly has a cold, but is trying to pick up my slack. I am doing my best to stay positive and engage with my wife and daughter, but there is only so much that my body can give. I will attempt to keep smiling and give everything that I can!

Wild (weird) Week

2009-08-02T17:34:00.003-05:00

I am struggling to believe that I went aq week without posting. Sadly, that is in fact the reality, though. I found myself overwhelmed by meetings and events for most of the past week, and on Friday morning we departed on our trip. The strategic planning meetings on Monday and Tuesday were incredible, but they overwhelmed my body on Wednesday. I did still manage to get some housework and yard work done, though. Unfortunately, that effort coupled with more meetings and errands on Thursday left me FAR behind in my trip preparations. I stumbled out of our office on Thursday night around 11 PM, took one dose of Xyrem, and knew that I would need to get up as early as possible without a second one because I still had far too much to do. It was also the second night in a row with a solo dose.

I did manage to get up between 4:30 and 5 AM, but I still delayed our departure by nearly an hour and a half. Fortunately, my wife and daughter remained calm. I did do some driving (about an hour and a half in the middle of that leg), but it wiped me out. We also got stuck in ridiculous traffic around Chicago. Being the car so long and the fact that I was baking on my side of the car left me with a horrific headache. Fortunately, my wife and daughter still went and enjoyed the dunes on Lake Michigan. Unfortunately, I was unable to awaken for my second dose that night, thus it was three nights with only one dose of Xyrem. The trip from northern Indiana to Tennessee was even longer than Friday's drive. Again, my wife did a bulk of the driving, but I again took a 1.5 hour section in the middle. I was fading badly at the end, and we wound up snapping at each other, but reconciled over lunch. The worst part of the trip came at the end. After 550 miles of driving, we spent nearly two hours covering the final 30 miles because traffic into Pigeon Forge and Gatlinburg, TN is so awful. Again, I was shot and baking.

I did get an okay sleep last night, but am also frustrated because our resort only has ONE internet computer available for guests. At some of their other resorts, they at least make wifi available in the lobby of the clubhouse, but at this one they CHARGE for it! So, I am sitting in the parking lot of a McDonald's using my new Qwest WiFi (available through AT&T). Of course, it took forever to make the connection work right, so I am only going to get a couple of chances to write on my blog. Worse, I truly had hoped to do a little work while I was here. Hopefully, I will work something out. I certainly plan to enjoy our vacation, but this is the first long trip that we have taken with me trying to cope honestly with my narcolepsy. I functioned poorly today (at best). We are going hiking tomorrow and rafting on Tuesday. While I am excited about those activities, I am also worried that I will be unable to do much else. I know that will frustrate my wife and daughter. We will see what tomorrow brings, though. I need to run now. I need to get gas for our car and to get groceries.

Sleepy Sunday

2009-07-26T20:35:00.003-05:00

The day was definitely low key at my house today. My daughter had a friend here over night, and the two of them had fun creating a movie on my MacBook Pro. They also played air hockey, goofed around, and enjoyed the Wii. My wife spent most of the day resting, but is getting to some of the chores now. She is definitely feeling some pressure because we are leaving on vacation this Thursday. Thus, we need to get the house cleaned and have a number of ducks in a row before we hop in the car. Not only is she thinking about the work at home, but also she needs to get a number of things done at her office. Plus, her husband with narcolepsy is not a big help in crunch times - oops!

I spent the day puttering, but I did get some things done. I washed some dishes and finally cleaned off our dining room table. I am still hoping to get a couple more things done before I head to bed. More than anything, though, I used the day to recharge a bit. I tried to let go of my worries, appreciating the things that I did get done. Hopefully, my lack of fretting will continue throughout the week, allowing me to maintain my energy and to accomplish a few more tasks in the process. I definitely need for that to happen, but sometimes my body and my narcolepsy make their own plans. It does not help that I have two six hour meetings on Monday and Tuesday up at school. In the end, though, things will be what they are, and we will still leave on our vacation regardless. Life is funny that way.

Sluggish, but Sane

2009-07-25T22:45:00.002-05:00

I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long "talk time" with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.

My wife asked me today how I can enjoy it because there is no "objective" to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.

I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.

Pulsating Pain

2009-07-24T22:27:00.003-05:00

My head feels like it is in a vice. The headache started around 3 PM today, and it is progressively building. Somehow, I managed to go get my daughter around 4 PM. Then, my wife, my daughter, three of my daughter's friends, and I went to a play at my school. Thankfully, my wife drove. I survived the play and even managed to laugh, but the pain is making it difficult to see at the moment. As always the pain is completely centered in my sinuses. I have no doubt that something rotten is happening in there. My ENT's office never did call with the culture results, but I am sure that they were negative.

I would guess that this headache is my body's signal to me that I have pushed far too hard at the end of this week. I have not rested much, even on my "off days," and for the past two days, I have had intense three hour meetings. My colleagues and I have been planning, which has been a blast. Because we are making significant progress, I have no doubt that this coming school year will be even better than last year. That said, though, I overtaxed my body during these past two days because I wanted to get even more done for school. Hopefully, a night of sleep and an extremely low key weekend will allow me to recuperate, so I can work toward a healthier balance next week. Of course, I have two all day meetings on Monday and Tuesday, a evening gathering on Wednesday, another team planning meeting on Thursday morning, and a road trip to Tennessee immediately after that Thursday meeting. I do not have high hopes for my body "settling" within the next week. Oh well, this too is just another joy of narcolepsy. I do get better at rolling with punches like this one (but I still don't like them).

Doctor Downer (and difficult decision)

2009-07-23T15:49:00.003-05:00

Seven weeks ago, I got a letter from my sleep doctor's office. Bluntly, it told me I better get in to see him, or they would stop filling my prescriptions. I called immediately, and today was the earliest appointment available. Given the tone of the letter, I checked if an appointment today would suffice. The individual assured me that things would be fine, as long as I had this appointment on the books. And, she was right. I got my July prescriptions in the mail, and my Xyrem was renewed without any hassle. Now, I have been wondering what my doctor would say, since I was basically 5 months late in coming into my appointment. Also, given my current state of mind, I was not completely sure what I would hope to discuss with him. I am handling things well, but I certainly would be open to exploring a different med, or looking at how my days tend to ebb and flow.

Invariably, I was ten minutes late to my appointment. A nice physician's assistant brought me back and did the initial intake. I told her that things were about as good as I thought they could be. I did not go into significant detail because I figured that I would have to say things twice. My BP was a tad high 130/90, and my weight still remains far too high. Their scale had me at 198, and I was 195 at home this morning (wearing fewer items of clothing). I did mention that I might want to discuss a different med, but also noted that NuVigil might not be the right direction since I had a terrible time with Provigil. I mentioned the relative success of my two medication holidays. She then left the room to let my doctor know that I was ready.

She then returned less than 5 minutes later. My sleep doctor felt that "as long as things are working, we should not switch meds." He also told her that unless I "needed" to see him, I was free to go. Now, I debated briefly about asking to stay so I could at least see him, but quickly decided that there would be little purpose in doing that. After all, I was still unsure as to what I hoped to discuss with him, and I was late for the appointment. So, I gathered my things and took my leave of the office. In the ultimate irony, the physician's assistant ask ME when I was supposed to return. I informed her that I had stretched my previous six month check-in by five months. I then said six months might make sense. And, as happened the LAST time I was in that office, the receptionist informed me that they do not schedule February appointments now. I need to call in November.

Of course, my PWN brain managed to put off that previous November phone call until I got the stern letter. I also was a tad flabbergasted that after the nature of that correspondence, I was not even SEEN by my doctor. I am sure that the physician's assistant is a sharp young woman, but she is not a specialist licensed to practice sleep medicine. It also does not help my mood that I did have time when she left the room to flip through the clinic's latest newsletter. While they "might" have cover Dr. Mignot's ground-breaking discovery in their Spring newsletter, the Summer one that was in the room had NOTHING about narcolepsy in it. It had lots on obstructive sleep apnea and lots on restless leg syndrome, but nothing about this wacko disease of mine. Of course, the clinic only employs pulmonary doctors, so I should not expect much. Except I do! If a clinic is supposed to treat narcolepsy, shouldn't they know something about it? Now, my doctor is a good guy, and he does know a decent amount about narcolepsy, but I think today is strong indication that I need to find a new doctor/clinic. Unfortunately, there are not other options, at least not good ones. Most other places in the Twin Cities are also pulmonary clinics. The one that is not tends to have a ridiculously narrow view of narcolepsy, meaning that they might actually tell me that I do NOT have narcolepsy. The added complication is that if I go somewhere else, they might be worse and could possible change my drugs in ways that make it impossible for me to work.

Sadly, I don't feel like I have any good choices here. I can stay where I am, continue to figure out on my own (and with my many PWN friends) how to handle this condition, and ensure that I can at least receive drugs that seem to work for me. The downside is that I might not EVER talk to my "doctor" again. And, if I do "need" to see him, will he honestly have genuine suggestions for me? Of course, leaving presents the possibility of finding a great doctor who can help me better understand myself and my disease, but that does not feel likely. In fact, I am honestly more worried that my current options (other than my actual clinic and doctor) would likely do more harm than good. The idea of having to re-tell my story (or even to be re-tested) while possibly being disparaged because my diagnosis is narcolepsy without cataplexy (or possibly mild/abnormal cataplexy which the guidelines still call "without cataplexy"). In fact, if that happened, it might be far more disrupting than just the mental stress. I might lose the meds I have, and if I can't work, I would also likely lose the small chance that I would have of a disability situation (if I don't have "narcolepsy," I have some condition of unknown etiology which would mean in legal terms that people think I am lazy).

Fortunately, I am not freaking out over this, but I do need to ponder a next step. I am not sure where to start. I know that there is an excellent neurologist in Saint Cloud, but have been remiss to try to see him because I doubt that insurance will cover it. And, I have no idea of how I would prove to my insurance company that I can't get proper care in the Twin Cities when many other PWNs "do." I actually know that they don't, but we are such a small population that it is easy to make blanket statements, particularly for large companies. Perhaps I am most frustrated by the fact that this brief stop in my doctor's office has added yet one more level of stress to my already growing anxiety of late. I truly do not have the time or the energy to commit to the process of searching for a new doctor. I also know that I hate the idea of "popping" into this office once or twice a year to simply pretend that my doctor checked on me.

Meandering Moodiness

2009-07-22T22:33:00.002-05:00

While today was slightly better than yesterday, I have yet to find any traction this week. That said, I did enjoy my day. My daughter and I continued to enjoy her new Wii game. Animal Crossing is ridiculously silly. You essentially fish, catch bugs, run errands for your neighbors, and dig up fossils. At the same time, it is hilarious. I must admit that the best part is spending time with my daughter. Although we did manage to limit the Wii time, it was still past noon when we "finished." We then went to lunch and took in a movie together. I do believe that things went well, but I still worry that I am not connecting with her enough.

I did manage to do one thing for my wife today. I got groceries, which we desperately needed. At the driving in the afternoon, I was a tad worried about driving again, but I rested for an hour before going shopping. Still, the trip to the store finished me for the night. I was able to let go of my anxiety over the things that I have not even started yet for my meeting in the morning. I think I can get a couple things done when I wake up, but I doubt I will have it all finished. Hopefully, my colleagues will understand and forgive me. I also have an appointment with my sleep doctor tomorrow. I need to pull together some questions for him. The appointment should go fine, but I also wish I had a firmer grasp on my current mental state. I am not sure how well my meds are working, but worry about trying to ask for anonther stimulant. We will see.

This needs to be short tonight because I need to get to sleep. I am painfully aware that my own inability to re-establish any sense of a schedule has been reeking havoc with my entire state of being - mentally, physically, emotionally. The good news is that I still have a week and a half of July. Then, I will get three weeks of August before school starts. That is a tremendous amount of time, but I must start moving in a better direction.

Deepening Depression

2009-07-21T21:56:00.002-05:00

Today was hard. I had an okay day, but I truly felt paralyzed when it came to doing any work. There is so much on my plate, and I have no idea where to begin. Confusing the situation is the sensation that I have not done much just for me recently. Many of my actions have "helped" me and others, but I occasionally have this burgeoning sensation of selfishness. I feel like I need to take a few days and just do things for me - read books that I want to read, watch movies that I want to watch, and let everything else go. Unfortunately, such an option is as unrealistic as my desire to clean the entire house in a day. One, I cannot afford for me to take those days because I need to help my wife and I need to get ready for the school year. Two, even if I COULD take the days, my brain would not let me. I would still not be able to focus even if I was doing things just for me. Instead, I would question whether that "me time" was warranted. If that sounds crazy, I can assure you, it also feels crazy.

I know that my continued sleepiness is a major factor in my indecision. When I am this rundown, I do not do well with decision-making. Also contributing to my consternation today was the cool and rainy nature of the day. The atmospheric pressure was literally weighing on my mind. Sadly, tomorrow may be more of the same. I also MUST do a better job of putting some structure to my day. Without any, I meander all of the place. It is imperative that I make a daily schedule a habit for myself. By doing so, I will be able to manage my day and my sanity with far greater balance.

Of course, all of these thoughts must be framed within the reality of my narcolepsy. No matter how good I get at setting a schedule, or accepting the weather, or handling difficult days, in the end, I will always feel tired even with my medication, even with the best night of sleep that I can get. That is the hard truth. I also know that I will invariably encounter "off days" because of the nature of narcolepsy. It is impossible to believe that I will be able to accept the constant sleepiness that I will have every day for the rest of my life. Eventually, my frustrations will build to the point that I need to rail against my disease for a time. I do hope that I will spread out those rotten days at wider and wider intervals, but I must accept that they will never go away. I hate that, but it is my life.

To end on an upbeat note, I did have fun playing a new game on our Wii today. My daughter bought Animal Crossing: City Folk. The game is super cute, and she and I both have a character in the town. While I must be careful (because this type of adventure game could consume me), I loved playing and watching the game with her. It was a silly and light-hearted moment for the two of us. I am sure we will play a little tomorrow too, but we are also going to have an adventure. Hopefully, that excurision will provide some fun for the two of us AND some structure for me.

Trouble Tracking

2009-07-20T18:33:00.003-05:00

Today has been odd. I know that I got things done, but I just don't feel like I did much. I had trouble getting going this morning. Some of that is residue from this weekend - I know that Mondays are hard when I have pushed during the weekend (and that definitely happened between the anxiety and the excitement of the play plus the physical exertion of striking the set). I also know that some of my discomfort today is connected to the numerous things that I feel looming in my life. Whether it is work for school or the multitude of house projects, there is much to do and the time is slowly dwindling. The hardest part is knowing that I probably can't get to everything that I would like to do. Well, that and the fact that I want to finish everything within a day. I do find it funny that my baseline is still, "I should be able to do that by the end of the day." At least I know it is ridiculous, but I still experience some emotional push back from my subconscious.

I did manage to take care of a few things for school today. Mostly, I got our writing curriculum books to two of my three colleagues. Hopefully, I will take care of the third person before the end of the week. I also did a little shopping for myself, and I had a great conversation with a couple of friends. While those interactions were unplanned, there were wonderfully refreshing. I just wish that I wouldn't do my mental calculus after them (I just spent 30 minutes talking to that person, which means I can only get to this now...). Just one more aspect of my anxiety and my narcolepsy having a little party in my brain. More than anything, today is reminding me that I need to set schedules for my days like this. As nice as it is that my daughter does not have rehearsal every afternoon, that event forced a small amount of scheduling into my days. Now, things are too open, and I run the risk of that paralyzing me. Hopefully, tomorrow will feel more productive. I also have some time tonight that I can use to my advantage.

Finally, I need to mention that I did advocate for myself today. My wife just scheduled her conference for October. While we knew that her annual medical writers conference is in direct conflict of my Narcolepsy Network, we have already planned that we are both going to attend our conferences. However, when she mentioned signing up for hers, I then asked if we could get things in order for my conference. I definitely hope that we can do that soon. While it is not much, knowing that I have a flight to Jacksonville and a hotel room will take some pressure off of the many things on my mind. Silly, yes, but real.

Slow Sunday

2009-07-19T22:05:00.002-05:00

Everyone got up late in our house today. As always, I was the first one up - Xyrem in a midnight and 3 AM means I am awake at 8-8:30 am. Today was no different. Of course, the physical exertion of cleaning up last night and the emotional strain of watching my daughter left me completely washed out. My wife finally arose around 10:45, and we got my daughter up at 11:15. I have no doubt that the stress of the play drained both of them. While my daughter loved the entire experience, she expended ridiculous amounts of energy, especially in the last seven days. As Alice, she was literally on the stage every moment of the play, and she gave to the audience for the full 95-100 minutes both nights. For my poor wife, the drain can primarily from insane nervous energy. I have seen my wife stressed about her own presentations, but that is nothing compared to her fretting over our daughter's performance. Since our daughter has definitely been bitten by the performance bug, I am hoping that my wife's anxiety will start to settle down.

Once we got up, we did nothing. I don't think any of us had much motivation today. We did decide to check out Harry Potter and the Half-Blood Prince. We loved the film, but even that trip to the film depleted the minimal energy that any of us had. I got home and felt like collapsing. Thankfully, my wife was able to let go of her own concerns about getting work done. I definitely would have found it more difficult to shut down tonight had my wife tried to push herself to do more work, partly because she has done a bulk of the work that was required from parents for the play. I sincerely hope that I can get back into a better groove in this coming week. I certainly have done a decent job, but I want to find a healthier balance in my work efforts and my exercising.

Although today was incredibly low key, it is wonderful to realize that we were able to have a day like this as a family. Far too often, we have isolated on days like this one. Or, one or two of us will be frenetic, while someone else shuts down. Rather than begrudging each other, we celebrated our fatigue together. As the PWN in the family, I truly appreciate that. As I have said many times, my wife and my daughter are the two people who I still worry about disappointing. Thus, days like today can be dangerous for me. Instead, today was heavenly.

Magical Madness

2009-07-18T23:43:00.003-05:00

The hour is late. We just got home from the set strike from my daughter's play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days of half doses, I was slow to rise this morning. I eventually got up and let my wife and daughter sleep. They were both wiped out after the stress and the exultation of yesterday's performance. I played a little on the Wii, did the crossword, and got a couple of things together for my MOONS-MN gathering. Then, when my wife did wake up, we had our weekly "talk time."

I truly enjoy our weekly ritual, but today was extra special because we basically talk about how much we both enjoyed seeing our daughter perform. Soon, though, I needed to get ready for MOONS. I got to the MOONS meeting early because we had to use a different room this time. Park Nicollet Methodist Hospital was doing maintenance work in our usual room. The new spot was tough to find. I did try to put up some signs, but then stood near the entrance to the hospital to make sure people knew where to go. I also wound up going up and down the stairs repeatedly because our usual meeting room is down one floor. Thankfully, I spotted most folks and got them to the room. The afternoon was a blast because we had 11 people there simply sharing their stories and chatting about life with narcolepsy. One of the best things was the age range. We spanned from 21 up to 80. I have high hopes for the direction that MOONS continues to take.

After the meeting broke up, I had to hop back in my car to get home. Traffic was rotten, so I got home at 5:05. Fifteen minutes later we were in the car heading for my daughter's show. My wife and I helped clean the floor before the performance because there was still popcorn crumbs in many spots. Then we did other odd jobs. The performance was even better tonight, and our daughter was radiant yet again. I am thrilled that this was such a good experience for her. Finally, our daughter got to hang out with her friends on the cast, while my wife and I helped get everything in order.

Although it is late, and I will definitely pay for the energy I exerted today, everything was worth it. The time with my wife and the MOONS meeting would have made for an awesome day if only one had happened. But the fact that both took place today, AND I got to see my daughter light up the stage yet again, makes this a day to remember. Crazy and chaotic though it was, the day was glorious.

Properly Proud Papa

2009-07-17T22:17:00.002-05:00

I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter's performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my mind. She stayed in character the entire time, even though she is on the stage the entire time. She even created some ad lib when one of the performers was late to the stage. If I had only seen her act tonight, I would be walking on a cloud for weeks. She was that good! And, the fact that the entire cast pulled together as they did tonight is a true testament to the hard work these kids have all put into the show.

What I was completely unprepared for, though, was the stunning beauty of my daughter's voice. I have heard my daughter sing before. I have even heard her sing the songs to this show. But, my daughter apparently has a WHOLE different gear for "performing." She sang with power, grace, style, and energy tonight. Her range is impressive, particularly considering her lack of any formal voice training. Even more impressive, though, was the richness and strength in her tone. She injected tremendous emotion into her words. Her big solos are in the second half of the show, after spending a full hour under the lights speaking and performing non-stop during Act I. The fact that she could still speak is incredible, but her first song in particular literally made people cry it was so touching. And while the lyrics are a small piece of that, far more of the tenderness was due to the way my daughter sang it. I am awed by her.

Paying Penance

2009-07-17T16:02:00.003-05:00

In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until "today" (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to get wildly off my regular schedule. The transition back would take me one to two weeks at least. That said, I am then faced with getting up after only one dose of Xyrem. That prospect is also rotten because I eventually get overly run down and cranky. I finally decided last night that I would actually do my second dose of Xyrem at 4 AM and would then be way off my regular routine.

Instead, I slept through the alarm until 5:15 AM. Since today is the opening show in my daughter's play, I figured I'd better not risk sleeping the entire morning away. Thus, I rose at 5:30 AM after only the one dose of Xyrem. Needless to say, I feel terrible today. My body is furious that I have not gotten nearly enough sleep of late. I also am feeling bizarre pains in the strangest of places because I have done little exercising this past week. I am so "off" that I actually had a sleep attack mid-morning while trying to do some work. I know it is bad when my sleep attacks are strong than 30 mg of amphetamine less than 2 hours after I have taken it.

Fortunately, the day has been extremely low key at our home. I had hoped to run some errands, but I realized mid-morning that it would be unwise for me to try. Instead, I simply plodded my way through some work for school. It was nothing more than data entry, but it will help us throughout the year. One of my greatest lessons from my narcolepsy is to accept the situation at hand and then to allow myself to adjust to it. Even a year ago, my day going sour would have derailed me completely. That would be bad on any day, but if I had lost my cool today, it would have been grossly unfair to my daughter (and my wife).

Underlying the normal zaniness of our home, a subtle (yet overt) pressure has been building all week. Tonight at 7 PM CDT, my daughter will perform with other children from her school - Wonderland! The Musical Misadventures of a Girl Named Alice. Given my daughter's personality, the tension would have been mounting even if her role was nothing more than a chorus member, but she is actually Alice in the show. She definitely has worked hard and is super excited, but her butterflies are likely the size of Mothra right now. AND, her mother (my wife) might be even more nervous. I have no doubt that she will be fantastic, but I also know that my daughter is like me, so she will dwell on every missed line and bad note. Our daugher will be on the stage for the entire performance, has approximately 300 lines, and sing the majority of two of the songs as solos. In other words, she is working her tail off the entire time. Having run lines with her, I know she will be spectacular and the show will be a hit.

But, even "knowing" that, it would have been unwise for me to risk coming unglued today. Beyond working on my few minor items, I tried to help my wife and to support my daughter. I also worked to keep the mood light. I suggested that we watch Shakespeare in Love. Not only is an "actor's movie" with all of the behind the scenes silliness, but also it is a great reminder that "it all works out in the end." As Henslowe says, we don't know why or how - it's a mystery. I think it is important for my daugher to have that in mind for tonight. The cast has first graders through graduated eighth graders in it. They also have NEVER had an uninterrupted run through of the play - the music director is a tad flaky. When the first "complete" run is on opening night, it can be unnerving. But I am hoping that my daughter can remember that as long as they smile, laugh, sing, and do most of their lines in order, everyone will adore the show.

My final regret in all of this, though, is that part of me wishes that I did not have to go tonight. Truth be told, I am too tired to appreciate it. Nevertheless, I would not miss this for the world. My daughter is far too important to me to let my narcolepsy get in the way. At the same time, I dearly hope that I will be able to forgive myself if I fall asleep at her show. I don't think that will happen, but anything is possible, especially the way I am feeling today. And, even as I write that I realize that I have yet to take my second dose of amphetamine for today - oops! I LOVE this crazy condition. I need to get those meds right now, but my error may just be the thing that keeps me awake through the entire show.

Fighting Frustration

2009-07-16T11:58:00.002-05:00

I have not slept well (or much) the last two nights. While that is NOT a good thing, my mood today is surprisingly upbeat. I know a piece of that is that I had a good meeting with my psychiatrist today. He is quite down-to-earth, but has also challenged me in the past to be kinder to myself. I think he easily saw today that I am definitely making progress in that regard. I also know that in that same vein, I am accepting that I have been up far too late the last two nights. Thus, the things that I accomplish today will be "gravy." I have to take that approach. I needed to stay up two nights ago to get some things done for MOONS-MN. Last night, the priority was getting the kitchen clean. That I did get those things done is a huge step for me. Hopefully, I will begin to keep such efforts within the frame work of "normal" hours for me, but it is also good that I am making strides in such areas.

Far too often, I get completely lost in "unstructured time." I definitely function best when my schedule forces me to be certain places at specific times. The rub, of course, is that having a ful agenda each day drains me far more than a day of relaxing. A huge piece of the equation is the fact that my brain rarely "shuts down." Summers are usually the worst because it can be weeks of "free time," during which my brain tries to run in hundreds of directions. Unable to accomplish a fractional percentage of my mind's inexhaustible list, I would then wallow entire days away. Although my aspirations remain far to large, I am getting better and better at releasing myself from that cycle. I work to accept my limits, while challenging myself to get one or two small things done. Slowly, I am adapting. Hopefully, it will continue, and I will stay balanced and healthy. I still remember the lessons of last summer. Every time I pushed too hard, my body quit as I ran a fever. I would like to avoid being completely laid out.

Partial Productivity

2009-07-15T11:58:00.002-05:00

The last day or so have gone decently for me. While I do still feel adrift, I am having spurts of success when it comes to knocking one or two things off my ever-growing list. Beyond the finances, I filed somethings in our office, and I managed to get some tasks done for MOONS-MN. Most importantly, I got invitations out to others for the MOONS-MN gathering this coming Saturday, July 18. I definitely hope that a few people can make it. We are trying to have a few gatherings that are more social in nature because we know that many people want to have MOONS be more of a support group.

The best part about getting the emails and the U.S. Mail sent is that I will not feel any guilt or shame now, regardless of the turn out on Saturday. Had I been unable to accomplish those tasks, though, I am sure that I would have blamed myself for any failures (real or imagined) that might have happened. I definitely wish at times that I did not have this overdeveloped sense of responsibility. The reality is that I can only do so much, and I am honestly putting forth my best effort. I also feel good that I am making progress in helping get MOONS more organized - many hands truly do make light work.

One goal that I do have for today is to put closer to one thing around my house. I am not sure yet whether that will be our office (or at least the clutter on the desks - since there is MORE to do than I can accomplish in a day) or cleaning the kitchen completely. I feel like I am slowly wrapping my head around the idea of chipping slowly away at my many tasks. That is just one more piece of the lifelong journey that living with narcolepsy gives to me. I also know that I will need to spend some time this afternoon resting. My sleep last night was limited. Although I intentionally worked late, I still managed to fall asleep (post-Xyrem) in our office. Fortunately, my wife rescued me and brought me to the bed for a couple hours of decent sleep.

Fading Focus

2009-07-14T20:11:00.003-05:00

Summer is always a curve and a blessing for me. I LOVE that I actually have "free time" because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be "behind" from the moment I set my schedule. At the same time, when I allow myself to "see where the day will take me," I find myself accomplishing next to nothing. Because so many things are a "top priority," I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my "random" nature means that I will eventually fail, and the "concrete" aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished - possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don't truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife's job, my daughter's activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

Birthday of Beauty

2009-07-13T19:42:00.003-05:00

Today is my wife's birthday. Hopefully, I have done enough (and will continue to do enough) to let her know how much I adore her. One of my greatest frustrations with narcolepsy is that it often keeps me from doting on my wife to the levels that she deserves. She is truly amazing. Beyond putting up with me, my wife manages to excel at an incredibly difficult job, to provide tremendous care to our daughter, and to maintain our household at levels that dazzle me.

I do hope that other people have been able to marry (or to be partners) with their best friend. My wife is an amazing blessing to me. She supported me throughout the awful journey that eventually led to my diagnosis, and she continued to keep my spirits up when I struggled to find the right meds. But, beyond those things, my wife provides me (and our daughter and the world) positive energy on a daily basis. She is quick to laugh and has a glorious sense of humor. She can even been childishly silly, which I love because I can too!

Yet, her magnificent intelligent regularly awes the doctors in the Department of Medicine at the University of Minnesota. My wife edits articles and grant proposals, particularly high level NIH grants. And, she is exceptional at what she does. Every physician, or other professor, who works with her raves about her talent as a writer and editor. My wife even has two published books. While multiple authors worked on the books, my wife did a vast majority of the "final" writing. The first book explored how to create a research productive department, while the second delves into effective mentoring.

The most amazing thing, though, is that my wife's great talent has nothing to do with her brilliance. Simply put, my wife is the kindest, sweetest, and most earnest person I have ever known. She goes out of her way to help others. She is also loyal to a fault. In fact, she is so loyal that she will choose honesty over self-preservation. She calls out injustice and dishonesty even when she knows that it may cost her social status. My wife exudes grace and class.

In the end, though, my wife is a person who deserves far more than the world gives her. I wish that my narcolepsy did not make it so difficult for me. I would love to shower her with gifts and affection. She deserves to be placed upon a pedestal. While I know I can't give her much, I will hold her tonight and whisper sweetly in her ear. One thing I know, simply letting my wife know how much she is appreciated will mean the world to her because she is a saint!

Stretched, Stressed, Stunned

2009-07-12T20:29:00.002-05:00

I keep thinking that I might have a calm, low-key day. I continue to be wrong. Although yesterday was fantastic, it was also draining. As a result, I awoke exhausted and completely discombobulated. I spent the first part of the morning simply getting my bearings. Eventually, though, I remembered that my lawn needed mowing - desperately. Thus, I shook out the last of my cobwebs and tried to get some blood flowing.

I do continue to question my own sanity because it used to take me thirty minutes to mow my lawn. Now that I own a push-reel mower and a lawn sweeper, it takes significantly longer. The added bonus today was that I had not mowed for nearly two weeks. My grass was frighteningly long, particularly in our front yard. When all was said and done, it took me two hours to finish the lawn, and I know that a few spots could have used more passes with the mower. The physical effort drained me, but I remain committed to doing this. I feel good about helping the environment, and an unforeseen benefit is the fact that I am getting better at letting go of some perfectionist tendencies. The reality is that I will NEVER cut every blade of grass, even if I were using a power mower. Beyond the energy drain, though, the extend time I spent on the lawn meant that I needed to get ready immediately for my MOONS-MN planning meeting.

The MOONS-MN planning meeting went extremely well, but it served as a constant reminder of my many undone tasks. We have a social gathering planned for next Saturday, July 18, which will be a fun "snack potluck." We are hoping that the afternoon provides our members with the chance to talk and to interact with one another in a casual and informal way. We also got our September 12 meeting planned. It might the most productive planning meeting that we have ever had. But, that efficiency did not diminish the gnawing sense of anxiety in the back of my brain. I just need to remember that I will keep doing my best and accept what I cannot complete and celebrate what I can.

In many ways, the toughest part of my day was yet to come. As I was on my way home, my wife called. Thankfully, I was not driving because she definitely needed to talk to me. We were on the phone together for the entire twenty minutes that it took to get me home. Then, we talked for another hour upon my arrival. My wife had an extremely difficult interaction with another parent today. It is even more frustrating because this person was essentially attacking our daughter. While some of what this individual said might be true, the reality is that this person was only looking at the situation from one point of view, not taking any of the possibilities for our daughter into account. Even more remarkable, the other person dismissed comments from my wife about some of the struggles that our daughter has experienced. By the time I got home, my wife was seething. By the time our conversation ended, I had worked my own way through seething and was simply sad and disappointed. I think the great misfortune in all of this is that as a result of one parent being overly aggressive and overly involved, two children may lose a friendship. Hopefully, that will not be the case.

I have no doubt that tomorrow will arrive with its own challenges. I hope that narcolepsy will allow me the energy I need to keep working my way back to an even keel. If not, I will do what I can, take a breath, and work to let go of all of my challenges and disappointments.

Relaxed Reminiscing

2009-07-11T21:28:00.003-05:00

I had an excellent day today. I wish I could say that I got done numerous tasks, or that I felt wide awake for the first time in years, but my definition of "excellent" is far more mundane these days. I did make progress on a few of the things weighing me down before my Friday ended, but that kept me up until nearly midnight. While that might have made for a rotten Saturday, the opposite happened.

I slept late (for me) and got up at 7:30 am. My wife and I had our weekly "talk time." It is always wonderful, but today was even better because we simply let ourselves enjoy the time together. We both got a chance to share some recent insights and passions. It was sweet, quiet, and fun, even watching the health care PR insider who was on Bill Moyers' Journal last night. After the time with her, I had a fun and exciting meeting with some folks from Narcolepsy Network. These folks are fantastic because they make the forums (and website) happen. Although I get support in many places, the people who I work with to moderate the Narcolepsy Network forums are some of the best people that I know - and they all have narcolepsy too. It is astounding to see the incredible work that they do. In fact, the new look of the forums (literally updated within the last two weeks) has brought in a decent number of new folks. Certainly, the Narcolepsy Network is far more than the forums (particularly if you become a member), but having a diverse way to connect to other PWNs is massively important. Our online meeting took two hours because we have such a good time interacting - even in a "chat."

The best part of my day was yet to come, though. My wife and I headed out to get our daughter. She was at an overnight birthday party on a lake. They even slept out in tents. Even the car ride was a hoot. My wife and I travel extremely well with each other. Once we added our daughter to the mix we headed from a spot north of the Twin Cities metro area to a suburb southwest of it. While that might seem awful, the traffic was relatively light - a huge plus. We were on our way to see some of my high school friends, particularly a friend who has been living in Great Britian for the past 12+ years.

The party was at his dad's house. The home and neighborhood are gorgeous, and the numerous children loved the pool in the backyard and the large game room in the finished basement. While ages ranged from 5 to 12, there were enough boys and girls at each range that everyone felt connected. The kids managed to keep themselves entertained, allowing the adults to interact as well. Even though it has been 23 years since we graduated from high school, these three friends of mine remain dear to me (and to my wife). While I do not see any of them as frequently as I would like, we always manage to pick up where we left off. It is also fun to reflect on the past and to learn about new adventures and activities.

Enhancing the entire afternoon, the weather was literally perfect. I often joke that many Minnesotans live in this state because we get three or four perfect days every summer. The sun shine was glorious, and a light breeze made the temperature, which hovered right at 80 degrees Fahrenheit, exquisite. Plus, we had fantastic food! My friend's dad made pulled pork for us, and my wife had homemade bruschetta and an amazing black raspberry cobbler. Both were a huge hit. Perhaps the best thing, though, was the chance to be present on this incredible day with a multitude of people who are good and decent. I simply sat around and chatted with a group of people who mean the world to me. The whole day reminded me that I am truly blessed. Narcolepsy drives me crazy, but it can't take a day like this from me. It thrilled me that I was not fretting about my "undone" tasks. Rather, I placed myself firmly in each and every moment of the day.

Groggy Gray Grumpies

2009-07-10T10:09:00.002-05:00

I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered - I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that "work" resulted in me being even more wiped out AND the following:

House is messier today than it was on Monday
Lawn is still not mowed
I need to make two phone calls - one to set up yet another meeting
Our office is still not cleaned
Our finances are not yet up to date
Oodles of things need to get done for my job
Oodles of things need to get done for MOONS-MN
Oodles of things need to get done for our house - window stain, door paint, room touch up, blinds hung
My wife is depressed, and more from me would help
My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just "work harder," but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won't in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don't). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight - pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least "get it" when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

Fatiguing Fight

2009-07-09T16:24:00.002-05:00

The thought hit me today that I expend tremendous energy battling my narcolepsy each day. Motivating myself to get up, pushing myself to exercise, forcing myself to bear down on a specific task, and stretching myself to be attentive to others (particularly my wife and daughter) are all doubly draining elements of my day. I truly want to do all of those things, but they not only take energy by their very nature, but also a second (actually initial) level of energy must also be exerted simply to overcome my inertia. Truth be total, my body and brain often seem to think that they would be most happy if I never left my bed.

Such a development would invariably be a disaster. I know my anxiety and depression well enough to know that even a couple of days of "nothing" would send me over the edge. My gray matter is constantly processing, thus with no outside stimuli, it would start to create its own. Having had a few other times in my life when my mind turned inward for "entertainment," I would like to avoid that FOREVER. Apparently, that big bundle of nerve cells in my cranium does fully get that it needs the rest of the body to keep functioning, since it has pushed the rest of me dangerously close to wanting to do something drastic. Fortunately, I am far more able to intervene when I can feel the irrationality starting.

None of that changes the situation, though, that narcolepsy not only makes my sleepy, but also it exhausts me because I have to push through it to "get going." I am sure it is the reason that I am an extrovert. I almost always dread starting - my day, my next project, a book, a conversation - anything. But, once I am engaged, I tend to gain energy for the interactions, even when it is something inanimate like a book. That is good because I think I would pass out if I did not draw energy from those activities. Of course, the catch for me is that when the stimulus is gone, my energy drops to much lower levels. My awareness to this reality has been heighten this week because I have been on the go a lot. I have had meetings and conversations for much of the past three days. When those have finished, though, I am always in a location that requires me to drive home (or to my next meeting). Certainly, I have felt tired other times when I have driven, but the fatigue this week has felt much more severe. It does not help that the burgeoning traffic in Saint Paul and numerous construction projects have made this the worst summer for traffic that I have ever seen.

I am not worried that I will fall asleep behind the wheel, but I am struck that each of my interactions have taken so much out of me. That happens at other times too, but I notice it less because I usually am not doing something as demanding as the driving that has followed each meeting or conversation this week. I definitely see it as another item about my narcolepsy that I need to tuck into my every growing file. I am also thrilled that this is my reaction rather than mentally beating myself up over something that is completely out of my control. Narcolepsy is something that I cannot "beat," but I also know that this is not about winning. It is about living and appreciating what I do have - every second of it.

Harsh Headache

2009-07-08T23:05:00.002-05:00

Occasionally, I get horrid sinus headaches. Often, they come in waves - I will be fine for months and then bang, they are back. Thus, today made me a tad nervous. I have essentially had a fairly strong one all day. Offsetting my concern, though, is the fact that my wife and I were out with friends until late last night. Thus, I only had one dose of Xyrem and subsequently only got 4-5 hours of sleep.

Also possibly exacerbating the sinus pain was the fact that I had an early morning meeting with a colleague. She and I were planning to meet at a coffee shop at 9 AM. We needed to work on a document for school. Apparently, I should never schedule initial meetings for coffee shops. As was the case last summer, I again spent a significant amount of time searching for a coffee shop that I could not find. Although I was not trapped in strip mall hell like last year, I was in the bizarre downtown of White Bear Lake, Minnesota. The downtown is split by a highway, which already make travel inconvenient, but the side streets have insane one way offshoots and goofy layouts.

So, as was the case last year (on my way to the MOONS planning meeting that I never found), I drove around in my car for nearly an hour trying to find this stupid coffee shop. I did eventually discover it (it literally has MINIMAL signage). It was closed! Fortunately, my co-worker and I found each other. I was already a half an hour late when I discovered the coffee shop was closed. Assuming my colleague had left White Bear Lake, I headed to the Caribou to send a grovelling email, but when I walked in the door at Caribou, I immediately spotted her. We wound up having a highly productive meeting. I also did not lose my cool when I finally realized my initial "defeat." That is definitely progress.

Unfortunately, my headache intensified after the meeting. I tried to rest at home after that, but the pain would not leave. I took Tylenol before driving my daughter to her rehearsal. That made my afternoon meeting tolerable, but the drive back home once again helped to tighten the vice-grip feeling in my skull. I got little done this evening, but I know that is okay. I hope that a decent night's sleep will mitigate the pain. If not, I know that tomorrow will be a long day.

Awesome Acupuncture

2009-07-07T23:44:00.003-05:00

Although I am still feeling the effects of my bathroom sleeping experience, I am in a significantly better mental and physical state today. While my massage yesterday is definitely a piece of the improvement, another HUGE aspect is that I had acupuncture today. I tend to look forward to my acupuncture anyway (I see my acupuncturist every two weeks), but today was phenomenal.

Two weeks ago, Sarah (my acupuncturist at Langford Chiropractic) used cups on me for the first time. Essentially, she created a vacuum seal in a cluster of places on my back. It made me feel significantly better. I was sincerely hoping that she might want to use those again today, particularly because the cups did wonders for the tension in my upper back. While I might get cups in two weeks, Sarah decided to stick (pun intended) with acupuncture today. She did "shake up" my treatment, though. She also had to wait to use electrical stimulation on the needles until half-way through my session (she had another patient "hooked up" when I started my treatment).

The different needle placement certainly grabbed my body's attention. She placed a four or five needles down the center of my torso. She also insert needles in my right ear and in a few spots on my legs and hands. Even before Sarah hooked up the electricity, I could feel energy moving in my body. While I often experience that to a small degree, today was radically different. I had not felt this level of energy movement for years. The moment that truly stunned me is that when Sarah did bring the electrical equipment into the room, I thought she hooked me up with it "on." As soon as she connected the electrodes to the needles in my left leg, I could feel the electricity jumping between them and through my leg. But, Sarah had NOT turned on the electricity yet. The energy I was feeling was the natural energy of my body.

I am positive that much of the reason for this heightened success is that I have been doing yoga frequently with my Wii Fit. When I had this experience before during acupuncture (in 2005), I was doing daily yoga. Thus, the fact that I had such a similar experience in 2009 at the first acupuncture session after I have begun to get into a yoga routine again seems like much more than coincidence. Even though the yoga on Wii Fit is simply a series of poses, probably chosen more for the stretching, it is clear to me that I am much more in tune with my body. The excitement of this experience has me looking forward to doing even more yoga and working my way back to doing Kundalini Yoga once again (as well as the Wii Fit). Although I know that I need the Western drug that help to offset the conditions of my narcolepsy, I am thrilled that I continue to use non-Western techniques to manage the disease. Acupuncture is an important part of my routine. It truly makes a major difference in the quality of my life.

Xyrem Zaniness (although it is an "X" and a "Z" the sounds alliterate)

2009-07-06T20:16:00.002-05:00

One of the best (and weirdest) drugs for most people with narcolepsy is Xyrem (zi-rem). We take the drug at night to allow us a much more restful sleep. It seems odd that a person with narcolepsy would need a drug to sleep well, but the reality is that we are chronically sleepy because we rarely get deep (stage 3, formerly stage 3/4) sleep. What the Xyrem does is knock us out for a short period of time 3-5 hours tops. Thus, most people with narcolepsy take Xyrem in two doses, meaning that we literally wake up in the middle of the night to take a medicine to help us sleep better. If that seems insane, you are getting a good idea of how bizarre this condition is. It is also important to note that Xyrem does not work well for all PWNs. In fact, some PWNs have horrid reactions to Xyrem. Also, others find it far more effective to take their Xyrem in three doses. The reason that Xyrem is "better" for many, though, is that its short acting nature does not add to the normal sleepiness that PWNs experience, unlike most sleeping pills.

I am a two dose PWN. Usually, the Xyrem works decently, but I definitely still need my stimulant to function during the day. But, I am far more balanced and significantly healthier because of the Xyrem. That said, Xyrem does not always work for me. Some nights, I am actually able to "fight" the Xyrem, particularly if I have been active later in the evening or if I am anxious about something for work and am trying to complete it. The result of that is my wife (and a handful of others) have gotten to see what I would be like if I drank (I am a no alcohol guy, even before my narcolepsy). While I have outlasted an entire first dose of Xyrem once or twice, more often I wind up sitting in bed trying to finish something, but unable to even form a thought. Eventually, I stumble around for a bit and then go to sleep. Even worse, I apparently am a happy drunk, which would be cute for my wife were it not Midnight.

The other problem, though, is that I am also periodically go through phases when the Xyrem hits my more heavily than it does at other times. On those nights, I struggle to make it to the bathroom in the middle of the night to urinate and then to get back into bed. Once, I am positive that I stood in our hallway for 30 or 40 minutes because I was incapable of walking the final five feet to our bedroom. Often, my wife will wake up during these episodes because I am swearing at myself (rather humorously) in the bathroom, essentially trying to convince myself to get back into bed. On those nights, she comes to rescue me by taking my hand and leading me to the bed. A few days ago, she did that and then had to deal with the giddy, silly routine. She was thrilled.

So, last night, I had one of my worst Xyrem nights ever. I had no intention of fighting the Xyrem. I knew that I was overtired and need to get to bed. Unfortunately, I thought I could get my iPod hooked up to our computer first and have it charged for the morning. I did get the iPod connected, but must have faded soon after that. It was 10:30 PM when I was hooking up the iPod, but I did not get back to our bedroom until Midnight. Somehow, it took me an hour and a half to cover 15-20 feet. Actually, I think I fell asleep in chair in our office. Then, I got up at some point in the night - I think it was round 1:30 AM. I struggled mightily to stay steady in the bathroom. Eventually, I sat down on the edge of our tub, but then I nearly fell into the tub. I decided that the safest thing would be to sit on the floor. I am fairly sure that I then slept for the next two hour on our bathroom floor. When I finally got back in bed around 4 AM, I felt horrid. I did manage to exercise and do yoga this morning, but I definitely felt off. The situation did not completely sink in until I had my monthly massage this afternoon. I neck and shoulders were horribly tense. In fact, my incredibly strong massage therapist had to use some metal tool on my neck in spots because the muscles would not release. She and I had a good laugh when I told here about my two hours on the floor. She then advised me not to do that again.

I certainly have no intention of making a regular habit of last night's performance, but I also know that anything can happen. While I am chagrined about my little adventure, I am also proud of myself because I am laughing about it. In the past, I am sure that I would have been too ashamed of the situation. The reality, though, is that Xyrem nights like last night are just one more piece of the crazy tapestry that is life with narcolepsy.

Foolish and Frustrating Fourth

2009-07-05T15:39:00.004-05:00

What a difference a day makes! I knew that I would pay a price for staying yesterday (and for not worrying about the energy that I was expending), but I had no idea that level, extent, or immediacy that the payback would affect my entire family. Narcolepsy reared its ugly head and brought along some other friends as soon as my day began today. We all got up slowly because we had gotten home so late. At the same time, I knew that my wife desperately wanted to get us all to Church - we have missed Mass far too often of late. Even though my body had NO interesting in getting going, I was determined to get moving so we could get to Mass.

Our daughter was far less enthusiastic about the prospect of Mass, but she did hope into the shower after my wife's quick shower. Unfortunately, my daughter stayed in the shower until minutes before our agreed upon departure time. My wife, who was rightfully cranky given our late night and the horrid traffic on the way home, let us both know that she was frustrated that we were likely not leaving at the agreed upon time. Hoping to mitigate the situation, I decided to forgo a shower (since there was NO way I could take one and have us leave on time), but I also resented that fact and that my daughter was not being respectful of the time or my wife. Nonetheless, we were ready to go at 9:35 AM which had been the agreement. Unfortunately, I could hear my daughter and my wife still exchanging comments before I even left the house. Since I was already frustrated and upset, their fighting only exacerbated my own angst, but I knew that my wife needed me to stay "upbeat" so I stuffed those emotions too.

My daughter continued to push my wife, even after my wife said the discussion was over. As a result, we had gone now more that a quarter of a mile and were sitting at a stop light. My wife then chose to mutter more negative and general comments under her breathe. I, of course, heard them. I had already been fighting the urge to scold my daughter for her behavior, and the reality is that I had not wanted to go to church in the first place. In fact, I was struggling to understand how we could be on our way to church when we were clearly being extremely UNchristian to each other. Finally, my fury over the fact that we had stayed late because of my daughter (which she had already forgotten) boiled over. Rather than blow up in the car (and make things worse), I got out of the car and said that I was going home. Of course, that action only served to make things worse, particularly for my wife, who was already feeling unsupported and disrespected. By the time I had gone a block and a half, my wife had turned around and had returned to get me. Her tone and behavior told me that she was not going to let me walk home, so I got back in the car.

We were then silent all the way to Mass. My nerves were a tad frayed because my wife's driving was a bit aggressive, but I was also furious because I did not want to be there and because my daughter's behavior had been at the core of much of this, yet she was oblivious to that (as she should be at age twelve). As my wife shut off the car, she asked us to go into the church without her. I said, "No." She then told me she needed the time, and I still declined because, "I am only here because you want me here." The statement was true, but was not fair to my wife. I also realized later that a deeper concern was also behind the response. I was worried both about what my wife might do (she was horribly upset) and what I might say to my daughter.

I have struggled a great deal in the last few years with how to talk to my daughter, particularly when it involves my narcolepsy. She has actually told me, twice, that I use my narcolepsy as an excuse. She, of course, has NO idea how hurtful that comment is, but my mind reels at what might have happened had I gone towards church with my daughter, but without my wife. If I had tried to talk to our daughter about how her behavior (and ours) had led to the fight, particularly the fact that we had stayed so late because our daughter was bent out of shape when we tried to leave at a reasonable time, I know that she would have lashed out at me. Given where I was at, I have no doubt that awful things would have ensued.

Fortunately, Mass was wonderful, as it so often is. Both my wife and I noted that the opening song was all about forgiveness. We did have a long conversation when we got home. At one level, all is forgiven, but the tenor of the conversation also impacted me in another way. Clearly, I hurt my wife today, and she hurt me. We also need to do a better job of helping our daughter understand our expectations of her and of her comments to us. But, we have been trying to do that. My wife and I both know that we need to do "more," but neither of us knows where we will find that "more." Certainly, we will work through our fights and forgive each other and our daughter. That does not change the reality that sitting in the middle of all of this is the narcolepsy. My wife DOES do more of the housework and planning. She is already tapped out by full-time work, ful-time parenting, and full-time partnering. I, too, am doing my best, but I have a chronic condition that limits my abilities. If I put too much into my work, everything else suffers. If I neglect myself, everything else suffers. If I dote on my wife or daughter, everything else suffers. Such is the nature of a chronic condition.

The deepest lesson out of today is to continue to let go. I control little of what happens in my life. Bad days come, sometimes sooner, sometimes later. I knew that having fun yesterday would exact a cost, but I was unprepared to face it when it arrived because I didn't think it would come like this. I need to be more honest with myself and my wife. I should have voiced my concerns about church the moment we got up. Even better though, I should have helped my wife figure out what might or might not happen if we stayed late yesterday. Better still, would have been for all three of us to agree to a plan well before the Fourth of July ever arrived. By doing that, we would have all had clear understandings of how the day would play out. What I con't do is let a day like today cause me to only worry about what might come. I also need to keep pushing myself to enjoy the moment. I think my realization of that is progress in and of itself. I have no doubt that if something like this would have happened even a year ago that I would have sworn that I would never stay out past ten PM. That is, of course, unreasonable and irrational, but it tends to be my baseline reaction to "mistakes." I have made numerous mistakes in the last two days. I need to own them, ask for forgiveness, forgive myself, and appreciate the good things that happened in between my errors. I am not "feeling" that yet, but at least I "know" that it is a far more appropriate response. Hopefully, I will continue to learn as my journey continues with my narcolepsy in tow.

Today, though, that attitude is hard to maintain. I am wiped out in general, and then I got way off my current sleep schedule and spent tremendous amounts of energy wrestling with my thoughts and emotions today. Things will get better, but I feel like I am once again muddling through a Sunday, barely doing anything productive, and wondering how I will find a decent groove to be healthy and mildly productive in my life while not grossly upsetting my wife and daughter on a frequent basis. I deeply dislikes days like this!

Fun & Free Flowing Fourth

2009-07-04T23:46:00.002-05:00

Happy Fourth of July! Today was a good day in a number of ways. Even though I have oodles of things to do, I found a way to let go of those concerns and allowed myself to enjoy the day. Even better, I was productive this morning and completed the evaluations for the students in my summer class. Then, my wife and I had a fantastic time exploring the Trader Joe's that just opened in Saint Paul. We have had various items from Joe's in the past, but this was our first foray into an actual store. We were in a hurry, but were certainly impressed. I would have liked to see a few more gluten-free items, and Joe's will not replace my co-op, but the store does have many impressive items. I remain perplexed as to how they can offer organic and fair trade items at such low prices, but I intend to give them the benefit of the doubt, although I do plan to do some research just to make sure.

Anyway, after making some fun purchases at Trader Joe's we headed to the lake home of a friend's mom. Our daughter was already there. We then spent the afternoon relaxing, eating, chatting, and laughing with family friends. We even got to play in a bizarre family kickball game. The entire thing was a hoot. My daughter did have some tense moments, and my poor wife had to fight fireworks traffic (and ridiculously poor planning by the Blaine Police Department), but on the whole it was a great day for all of us. Even the late return time did not get me down because I got to see fireworks for the first time in years. I have no doubt that I will pay for a midnight bedtime for a day or two, but it is important to have fun from time to time.

The realities of narcolepsy make so many days difficult, but today was a sweet gift. I certainly was sleepy throughout the day, but the whole purpose of the day was simply to relax. Thus, it was perfectly fine to be sleepy. I am proud of myself for being present with the fun and low-key aspect of the entire day, rather than obsessing over the numerous things that I was not accomplishing. I do think that I am getting better at living with this disease. That idea might be the most freeing thought that I have had on this fantastic Fourth.

Delightful Date

2009-07-03T21:26:00.002-05:00

Occasionally, my wife and I find time to go on a date. Sadly, such an event is frighteningly rare. We did manage to go on a date today, though. It was wonderful! My only frustration is that going out to lunch and seeing a movie wiped me out. Hopefully, we can still have some snuggling and romance tonight. Nonetheless, the chance to let everything else go and to get away with each other was glorious.

Our daughter headed off to a friend's lake cabin today. Thus, we have the house to ourselves. I made the date suggestion last night when we knew that we would be childless for most of today. My wife jumped at the idea immediately. We even handled the dining choice well. Initially, I tried to wrack my brain for some place fun to eat near the theater, but narcolepsy does quite a number on memory and decision-making. As a result, we decided to drive toward the theater and then explore for a place to eat. The town preceding the movie theater is North Saint Paul. We eventually discovered downtown in North Saint Paul. That alone might have been worth the trip. Even though the city is technically an "inner ring suburb," the place felt like the main drag of any out state town in Minnesota. It was wonderful!

We decided to eat at Cindy Jean's. There were a few other choices, but the Legion Hall looked iffy and the bars were not the scene we wanted today. Cindy Jean's was a riot. It has three tables and funky decor. There is a huge flat screen TV and a Wii. In fact, Cindy Jean's apparently hosts regular Wii tournaments. The sandwiches were fantastic, and we thoroughly enjoyed the fun meal that we had there. We did feel bad for the other couple eating there. They had no cash, and Cindy Jean's does not take plastic. Thus, the poor guy went looking for a cash machine. It sounded like he had to pay a bank to cash his check. And, he was gone for 20 minutes.

We then headed for the theater. We saw Sam Mendes' new film Away We Go. It stars Maya Rudolph and John Krasinski, and it is fantastic. My wife had seen some reviews that had raved about the film. It is beautifully shot, and the main characters definitely reminded us of each other. Krasinski and Rudolph work well together, and their characters make an odd, but well-matched couple (which is part of the reason we both identified with them - my wife is definitely the yin to my yang). As much as I enjoyed the film, I think the best part might have been reflecting on the film with my wife as we drove home. Nothing is more thrilling to me than getting a chance to be with my amazing wife.

Perhaps what made this day most special is that Monday (June 29) was our 18th anniversary. We did not have time to celebrate in any meaningful way. We definitely acknowledged the event, but having this sweet and simple date today was a perfect celebration for us (and of us). I adore my wife. She is the rock of our family. She is also the most wonderful, intelligent, gorgeous, exciting, sexy, sweet, gentle, driven, and gifted woman that I have ever met. I am blessed to be her husband. I know that I would not be handling my narcolepsy nearly as well without her constant love and support. Thankfully, our relationship goes stronger and deeper with each passing moment and every passing day.

Blog Bonanza

2009-07-02T22:36:00.004-05:00

My excitement went through the roof today. I learned of yet another blogger with narcolepsy. Narcogirl write Confessions of a Narcoleptic. Similar to the other blogs that have come on my radar lately, she approaches her blogging in the fashion that I do. She is using the blog as a place to record her thoughts and her experiences with narcolepsy. When I first started writing mine, I was so disheartened that I only found a few other people writing about their narcolepsy. I certainly love the forums I have found on Facebook and at the Narcolepsy Network site, but I adore the chance to read the more personal reflections that tend to populate narcolepsy blog posts.

I now have fourteen other blogs listed in my "Other Narcolepsy Blogs" blog roll. Not all of them are updated frequently (in fact some have not had a post in a year or two), but it is cool that the list is growing rather than shrinking. The fact that I have added six blogs within the last three weeks is even more incredible. And, a few of those new blogs do post at least once or twice a month. Narcogirl has started off at an impressive pace. As one who has gone through feast and famine in my own writing (one month with 19 posts, another with 3), I think it is great that anyone with narcolepsy takes a few moments here and there to post at all.

I truly see these others bloggers as gifts. The chance to write about my own experiences is phenomenally rewarding in and of itself, but few things benefit me more than the chance to learn another PWNs story. While no PWN has the same story or symptoms or medications, we can all relate to the insane experiences that others have with this crazy disease. Thus, finding other blogs help me to remember that I am not insane. I also love that other PWNs are willing to discuss their condition in a public setting. I hate the idea that I need to hide my condition. I certainly do not "like" my narcolepsy, but it impacts who I am. I don't want people to feel sorry for me, but I also do not want to deny that I am sleepy most of the time. It IS part of me.

I defintely hope that my list of other narcolepsy blogs continues to grow. I also hope that as more PWNs lift their voices and share their stories that we will all benefit from the expanding awareness that more blogs will bring. Please consider reading some of the blogs listed in my narcolepsy blog roll. It will be worth your time.

Money Madness (or Maddening Money)

2009-07-01T16:01:00.002-05:00

Although I rarely discuss it here, money tends to be one of my largest sources of stress. I am almost ashamed to admit it, but money tends to have little meaning to me. That might be an okay situation if I were a single guy without a chronic illness, but I am a married man, a dad, and a person with narcolepsy. As a result, I definitely need to be conscious of my spending. I also need to provide assistance to my amazing wife. While she is certainly a better (and wiser) money manager than I, the reality of our lives is that much of the tracking of our spending has fallen to me. I am good at the "organizational" aspect of that, but I become quickly overwhelmed when it comes to the decision-making aspect of the finances.

Fortunately, I have only had a small number of complete errors when it has come to our money. We are also blessed in that I am able to supplement my wife's income because I can still work part-time. At the same time, keeping track of our bills and our expenses has gotten more and more difficult for me. To function in such a capacity, I need to be extremely focused. Unfortunately, I expend extensive energy to be that person. Thus, I am either neglectful of my other "duties" - being a husband, being a dad, being a teacher, and taking care of me - or I miss a bill payment here and there. Because of my commitment to living in the moment, the latter has happen more frequently than the former. While that is good, I think, it also sending my wife through the roof (and does not do much for my shame based thinking). We are attempting to shift much of the bill paying back to her, but she has so much else to do that it has been difficult.

The larger reason that this is on my mind, though, is the time and energy that I have used over the past two days. We need to change our "primary" credit card due to the merger of Northwest Airlines and Delta. For years we have used a Worldperks credit card to pay for many things. Our reasoning has been simple. We fly four or five times a year and using that card has gotten us at least one free (or reduced) ticket each year. Since we live in Minnesota, Northwest was our primary (perhaps only) option for the variety of flight times that we often needed. Now, Delta will be that airline. They only want one credit card option and like American Express. While I could care less which card it is that I am using, it is driving me insane to remember/discover all of the places that we have set up our current card as the payment option.

If I don't do this, we will either need to activiate the "new" card from our current bank simply to be safe. Then, any charges will go into a "new flex points" account for travel on any airline, but the AmEx card will get most of the charges, so we will never use the "flex points." Obviously, this is a minor issue in a world which is seeing a global recession, Iranian oppression, and numerous human rights violations. At the same time, it is driving my tiny brain into the ground. I have changed most of our pre-set card situations - I think. Still, one site would not allow me access, and another would not let me remove the defunct card. I added a new one, but the old one is loved too much perhaps. I bet it won't be so popular if I accidentally charge something to that card.

Even having gotten most of these updated, I am nervous about what I might have missed. The reality is that my narcolepsy undermines both my memory and my self-confidence. And, in the event I do miss some payment, I will get to wrestle with that guilt too. Hooray. Hopefully, I can let this junk go. The most important thing is that I am making progress on it. I also need to remember that we are extremely lucky to have a steady and solid income. As frustrating as these financials worries are (and narcolepsy is), we are truly blessed and want for nothing.

Massive Mayhem

2009-06-30T22:09:00.002-05:00

I truly love that even the transition into summer break takes days of adjustment. One would think that a guy with narcolepsy would find it thrilling to begin a month and a half of relaxing. If only it were that easy. As I continue to remind myself, ANY change in my daily routine throws me for a loop. I tend to be more tense and to snap at people more rapidly. While I am making the shift better this time, I still find it frustrating - and stupid. Sadly, I am sure that no matter how long I continue to "learn" about living with narcolepsy, the act of moving from one daily schedule to another will continue to be difficult for me.

The up side is that I did get up today and exercise. That alone is a huge step for me. Unfortunately, I know that I am still recovering from last week. Thus, the exercise sapped me for a couple of hours. After resting, though, I got some work done. I even decided to have some fun after that, but invariably that led to trouble. My daughter decided that she wanted to play with the Wii too. Things were going great, but then after we each did our "Wii Fitness" on Wii Sports - which is an individual activity - she simply started doing something else individually. When I questioned her, I got a rude retort. I have no doubt that my daughter thought that she was being funny, but when I challenged her on that comment, I got a second rude retort. Since I was tired and crabby, I snapped back and a lovely fight ensued. It then continued as my attempted to reconcile. And, adding a second layer to my disappointment in myself, my wife was still home and found herself embroiled in the disagreement.

My daughter and I were able to reconcile and apologize to each other, but I hate that I was unable to keep myself in check when my daughter acted like a normal pre-teen. While her behavior was not appropriate, I can't lash out at her. I did contain my frustration far better than I have in the past, but the reality is that I still reacted rashly and immaturely. As the parent, I need to give her the space to be angsty, and I need to be patient enough to let her settle down before re-engaging about the situation. I do know that I happened things "better," but I need to keep pushing myself on this. The narcolepsy definitely complicates the situation, but my relationship with my daughter is far too important to let this medical menace jeopardize it.

The other difficult item to accept today was the fact that I nearly fell asleep in a chair tonight. If that was happening at 10 PM, I would be okay with it, but I was dozing and drifting heavily at 6 PM. Now, I know that I had a productive (and stressful) day. I also know that transitional periods are tough for me. But, it remains horribly humbling that I spent most of my day sitting around, yet I can't stay awake past 6 PM even with 60 mg of amphetamine in my body. Seriously, you GOTTA love this condition - NOT! Obviously, I rallied. I even got a few other things done. Hopefully, July will hold more hope for a solid schedule, smoother transitions into my new days, and for more patience with my incredible and wonderful daughter.

Funny Fallout

2009-06-28T23:55:00.003-05:00

I always find it strange when I know that I am managing my narcolepsy better. The condition is so bizarre that it almost seems unwise to make such a claim, yet moments like today are plain and obvious. Thus, I must acknowledge the reality of life and my condition. As I knew, my decision to sleep a fractional amount between Thursday night and Friday morning overwhelmed me today. I spent the entire day lolling around my house. I did manage to get a small amount of work done, but the majority of my time involved working on a crossword, watching some DVDs, and exercising with our Wii. I have no doubt the exercising also added to my exhaustion.

Although I am pleased that I got some work done in the midst of my exhaustion, I am more excited that I did not feel guilty about the "undone" work. I found myself able to accept and to find comfort in that reality. I have time, plenty of it, for those other tasks. In reality, I have weeks to get to them. I don't want this initial list to take weeks, or even days, but in the past I would have tortured myself for not doing them today - immediately. Thus, I am content with knowing I have time.

The other element of the day that was exciting is that I had chosen to not "exercise" during the second week of MITY. The reality is that I did get some exercise simply from my "active" teaching style, but I did not work out. I love, though, that I prioritized my health over cleaning our office or putting away books. I have no idea if I will be able to hold onto that attitude, but it feels like a step in the correct direction. Hopefully, I will find a way to make working out a habit so I can carry it into my school year, but I also love that I am not worrying about that either. Needless to say, my exhaustion remains, but I am thrilled that I am letting go and learning to relax.

Wiped & washed out

2009-06-28T00:34:00.001-05:00

I survived. In fact, I thrilled to a large extent. MITY wrapped up wonderfully. In many ways, my co-teacher and I were more on top of things this year than we have ever been. I truly believe that our class gave a tremendous reading. Each student delivered her or his best reading at the actual event. Plus, the book this year, while slightly smaller, seems to have better quality than ever before. I know that a piece of that is that I did more and better editing this year. Now, my brain constantly reminds me about the multitude of pieces that I did not provide feedback, but I definitely feel like I did the best that I could.

Perhaps the highlight of the session, though, came on our final day. I chose (and that is the truth) to stay awake as long as I could to get as much work as I could done. I eventually had to get into bed, and I did sleep for two hours. I knew that I was making a choice and that I would likely lose the weekend as a result of that choice, but I felt that it was worth it. As a result, we not only had the supplement (we make a book of the students work, abd then create a final "supplement" that has fun memories and a few more pieces by them held together with only a staple) ready, but we also had the 3 CD-ROMs (photos that I took, the book and supplement files, etc) burned, and I love the poem that I wrote for the class (that is not always the case). I also managed to be present for our students and truly enjoyed the final day of MITY this year.

Typically, I am a wreck for the final two to three days. I worry that we won't get the book together, then I worry about the reading, and then I obsess about what I have done and what I have not done for the last day. This year, we were ahead of the curve each step of the way. We dropped the book off earlier than we ever have, although I am still waiting to get it turned in on a Wednesday rather than a Thursday. The reading came together beautifully, and I know our final day was as good as it can get - the day will always be bittersweet because we all have to say good-bye. Perhaps, the final element that made this "closure" so complete for me is that my co-teacher and I had the room cleaned, the computers returned, and our keys turned in before 4:30 PM. Much of that had to do with the assistance that we recieved from our students, but it was breath-taking nonetheless.

I also think I am pleased with the way that MITY went this year because I see it as one more sign of the strides I am making in handling my narcolepsy. Of course I was tired and pushed too hard at times. I need to get a better grasp of what I can and cannot expect of myself during the middle weekend of MITY. I also need to remember that the transition from "regular" school to MITY will always be bumpy because it is a shift in my daily schedule - and my body does not "do" that well. But, I am clearly starting to let go of the things that I cannot control. I am allowing myself to release - over editing, over "undone" work, over insane expectations. The journey is long, but each day is another step. Which raises my final point of pride. It was at MITY a few years ago that I first began to recognize honestly my inability to live in the moment. Although I certainly am still four days ahead, or two years in the past, in any given moment, more and more I am grounding myself in the events unfolding before my eyes. The results could not be clearer. My days are richer, even when they are limited by my narcolepsy. I can't get everything done that I "want to," but I am accomplishing more each day than I ever did when my narcolepsy was "hidden." I regularly avoid direct self-praise, but I need to admit that even I am impressed by my improved efficiency.

Sunday Struggles

2009-06-21T16:03:00.002-05:00

Today is Father's Day, and yet the only real emotion I have managed is frustrated anger. We went to a Minnesota Twins game last night to see an old friend. The game was good, except that the Twins lost, but we got home late. Because I had food at the game past 8 p.m., I stayed up until 11:15. When I finally took my Xyrem and went to bed, I was overly warm. My wife and I were intimate for a time, but things just were not right. Plus, the Xyrem can make me more than a little goofy. I did finally fall asleep. I even managed to take my second dose last night, although I once again slept through my alarm.

When I awoke, however, my wife was missing. Due to her discomfort, she was sleeping on the futon in our basement. I checked on her and returned to bed. I awoke this morning at 8 a.m. While I had rested, I already felt the stress of the day. I am behind at MITY (my wonderful gifted and talented students are producing at record levels this year), and there is far too much that needs to get done around our house. Unfortunately, between my exhaustion and the Twins game on Saturday, I got nothing done. Thus, I climbed out of bed already wondering how I would get to everything on my mental list.

My wife and daughter eventually got up too. They had planned to play some tennis before the day got warm. When they left, I decided to use the time to get in some exercise. I had only done a tiny amount on Saturday and am feeling worse about my physical condition than I did a week ago when I re-started my exercise. While the exercise went okay, I was trying new yoga poses in the end. Invariably, my wife and daughter arrived back home in the midst of that. My daughter immediately plunked down to "watch" since Wii can become a bit of a spectator sport. Although I was self-conscious, I refrained from saying anything. Then, as I began to attempt the final yoga pose - which I was incapable of performing - my wife also arrived. At she sat down, a chair we have owned for thirteen years suddenly lost a bolt. My wife began to let me know that I need to fix the chair when I got done with my exercising.

Sadly, I snapped at that point. Things only got worse when I realized that the bolt that came loose was in a ridiculously difficult area. It literally took me over 30 minutes to fix this one bolt. AND, when I finally set the chair upright, one of the two washers that HAD been on the bolt, once again fell to the floor. Somehow, I had managed to let that come off in my efforts. Needless to say, that final insult did little to dispel my rotten mood.

Of all of the things that have happened today, I am most upset about losing my cool with my wife. I know that no one was trying to make me feel bad or undermine my day, but I lashed out because I felt like that is exactly what was happening. And, of course, I have allowed the majority of the day to slip away because I have been wallowing. I also exhausted myself between the exercise and the (literal) wrestling with the broken chair.

Days like today are the ones that truly infuriate me in terms of my narcolepsy. Consciously, I know that I am wiped out because I am trying to do too much by teaching these two weeks at MITY. Yet, I still consciously and sub-consciously expect that I should also be able to do "normal" things during the weekend. Our house needs to be cleaned, our finances need updating, our windows need staining, and our office needs organization. Even though I literally can't do even one of these things, I feel like I should be able to do something. Worse, I know that my wife needs me to get to some of these things. The state of our house is weighing on her too. But, I am unable to do it. Thus, I get angry at myself for letting her down too.

Which brings me back to the fact that today is Father's Day. Instead of relaxing and celebrating with my family, I have yelled at the two people I love the most. I have also pouted because the day has not felt at all like "my day." Lastly, I don't even feel like I can make things much better right now because I can barely think straight. My body is tired, and my internal turmoil is paralyzing even the remote chance that I will get anything done - including the massive number of pieces from my students (which will only make me MORE stressed out tomorrow).

I know this day will pass. I know that tomorrow will be okay. I know that MITY will be fine and that the class is good. I know that my wife and daughter still love me. I know that my physical fitness will be what it will be. But, I can't feel it, and I hate that. Days like this are horribly bleak. Yes, I can (and likely will) get at least one thing done, but I won't even enjoy that. More than anything, I just wish in moments like this that nothing was "my responsibilty." I know that is an impossibility, but I feel overwhelmed by the frustration and sadness that I have once again "lost" a day (and a bit of my sanity) to this rotten disease.

Museum Musings

2009-06-19T15:43:00.001-05:00

I am sitting in the cafe at the Minneapolis Institute of Arts. Correction, I am being paid to sit in the cafe at the Minneapolis Institute of Arts. I am here with the students in my Minnesota Institute for Talent Youth students. My co-teacher and I have brought our students here each year for the past four. Usually, I am pacing the galleries, looking for our students to photograph them, and worrying that I am “not doing enough.” I do periodically take a few minutes stop to look at a piece of art, but so often in the past I have felt like I MUST be the “teacher” while I am here.

I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.

Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.

It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can't let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.

On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.

Wonders of Wii

2009-06-16T12:53:00.002-05:00

I have loved video games my entire life. Growing up in the 70s and 80s, I experienced first hand the arrival of home video games. I also fall into the primary age group to have "lived" the hey-day of the video arcade. My summer before ninth grade, I spent hours nearly every day in the local arcade. While part of me regrets those lost hours, another still longs for the sheer joy of honing my skills at Galaga and Tempest.

Although I have own a couple of game systems as an adult (a Super Nintendo and a few "plug in" consoles that hold 5-20 games), my wife and I have purposely avoided purchasing any of the ever improving systems during the last 15 years. The primary reason truly is my inability to stay sane when I have a game system. Certainly, I chafe at the idea that I am incapable of remaining grounded when there is a game to "beat," but I also know that the decision has been a wise one.

Given my narcolepsy, I shudder to think the state I might be in today if we had purchased a Game Cube or an X-Box. Heck, I have even avoided computer-based games for the same reason. I have no doubt that Worlds of Warcraft would have stolen hours of sleep for weeks on end. In fact, I would be willing to bet that gaming easily might have masked the depth and extent of my excessive daytime sleepiness for at least four or five more years.

The irony is that I am writing this the day after I purchased a Wii system - with my wife's permission and approval. I might be a risk-taker at times, but I am not an idiot. While I do worry that we could eventually acquire a game or two that might tempt me into a few "all-nighters," I am more confident about my maturity and decision-making. The reality is that I know what happens when I push, and more often than not, I am unwilling to sacrifice the next two or three days simply to "enjoy" a little friviolity. Let's hope I am still saying that next month and next year.

We decided to get the Wii because I am struggling horribly to work exercise into my routine. I feel like I am finally beginning to learn how to balance home and work and me. That in itself is a massive accomplishment for me. But, I also know that I will be healthier, happier, and more complete if I can find even a modicum of fitness. Enter the Wii. My wife and I spent Saturday night with my sister and her husband. They have had a Wii for awhile, but this was our first couples "Wii night." Everyone had a blast playing a wide variety of games, but at the end of the evening I got a chance to try Wii Fit and the Balance Board. Not only did I find it fun, but I also realized that it could easily be a missing step in getting back into some type of exercise groove.

The beauty of Wii Fit is that I don't have to GO anywhere. My narcolepsy makes me so wiped out at times that the idea of driving to a gym, or even running to the lake a mile from our house, is simply not an option. I worry that I will exhaust myself. If I do that and then need to drive home, I risk my safety and that of others. If I do it and am now a mile from my house, I am foolish enough (and male enough) that I will still try to run home. Then, I will get sick. It happened repeatedly last summer with ultimate and with yardwork.

Instead of risking those things, I can now plug in my Wii and do some yoga and light conditioning work in front of my TV. It also "feels" like a game with vocal support from the etrainer. The Wii can't be my only exercise, but it is a perfect place to start. I would love to pretend that I am capable of pushing myself to establish a workout routine on my own, but I am not. I have nearly forty-one years of failure as evidence. I do best, in terms of fitness, when I am part of something. The Wii tracks my progress for me. And, the fat little Mii, that is ME, provides its own motivation. I know this is going to help me.

I feel blessed to have a wife who supports me so much that she is willing to change her mind about getting a Wii. I also am proud that I bought the Wii last night and have already used it twice to "workout." That is two more workouts than I have done in months. Pretty good for less than 24 hours. Still, it is not lost on me that while I am starting strong, I have done that before to taper to nothing within days. I believe this will be different, though. I need this and the exercise will take the place of some of my other recreation. Building up my strength slowly will also prevent my system from crashing. That is also a good thing (and a chance from the past).

Summer Surviving and Blog Blessings

2009-06-11T22:35:00.003-05:00

Somehow, my summer has managed to feel as frenetic as the school year did. I spent the first three days of my "vacation" meeting with the other folks who teach the same course that I do. While the work was exhausting, it was also extremely productive. We are making huge strides by mapping our joint curriculum. I thoroughly enjoyed the time that we all spent together, and I have high hopes for the coming year.

I have also been preparing for the creative writing course that I have taught for the past eight summers. As I was mapping my regular academic course, I was also puttering with the syllabus, web site, and lesson plans for this summer course. My co-teacher and I got to spend some time together today. I also got to spend time with one of our former students (and chatted with another) who is now interning with the aspect of the program that enrolls my daughter. I love that this young man is still a part of the Minnesota Institute for Talented Youth, but I also am overjoyed that I will get to see him more frequently over the next two weeks. This year will be the first time in five years when this fellow is NOT in our classroom.

While I thought that I would never experience anything in my "regular" teaching career like MITY, I realized over the past two weeks that my current situation at school IS like MITY. The rigor and creativity are present in both places, and I get to team with marvelous co-worker in both situations. Thus, my excitement for MITY feels different this year. I am still elated that it is here again, but it is not my "salvation" as it has been in the past. I think that is a good sign.

Finally, I need to give a shout out to a fabulous new blog that also discusses narcolepsy. It is actually called Narcolepsy and is written by a person with narcolepsy in Florida. He is close to my age and has a markedly similar approach. He too simply wants to process (for himself and others) what it is like to live with this unnerving, facinating, awkward, and bizarre disease. I do hope that others will check out what he has to say. Best of all, he posts on a fairly regular basis - something I am hoping starts to happen here again (soon).

Jumping into June

2009-06-02T22:23:00.002-05:00

Nothing captures the paradoxical nature of this entire school year better than this statement - Last week was the longest week of my teaching career, and I can't believe that it is already June. How last week's four days seemed to last a month is only made more confusing by the warp speed nature of this school year. I truly feel like my ninth graders just walked in the door. I know that the rapidity of time accelerates as I age, but this seems insane.

Of course, I have vivid memories of the richness of numerous days, so even the ridiculous pace of my life has gained more depth. It thrills me that I am learning to appreciate each moment rather than fretting about what I have left undone or anticipating the voluminous work loads that await me around every corner. Thus, this school year may have only last a split-second, yet I have found entire worlds within the fractional pieces of that split-second.

I am also taken aback by the ability I have found to push hard and to balance that exertion with quiet rest. I have never been this productive, while still respecting my narcolepsy. I definitely need to get better at finding the middle way, but I am neither living in denial about my condition, nor am I surrendering to it. In fact, while I am physically exhausted, I am also brimming with excitement because I will begin planning with colleagues next Monday. Rather than wanting to simply collapse for a week, I feel mentally and emotionally ready to begin processing and creating for the next batch of ninth graders.

Many MOONS Memories

2009-05-30T21:43:00.002-05:00

Today was wonderful (and exhausting). Approximately one year after making it to my first MOONS-MN meeting, I presented my story. I also shared the many online resources that have been such a tremendous help in my journey. I honestly feel like the presentation went extremely well.

Initially, the attendance looked to be low, but by the end of the meeting, the entire room was full. Even better, we had some returning members who had been unable to make the last few meetings. We also had two brand new people. One member informed me that he had been present when the Minnesota Narcolepsy Association was formed in the late seventies. I am super excited to work with him to get others from the earlier group re-connected to this newer version of the Minnesota support group.

I also must confess that I enjoyed sharing my own story with other PWNs. I find such power in speaking about my condition with peers who truly "get it." The many nodding heads throughout the entire presentation definitely affirmed my experiences. Because MOONS, this blog, the Narcolepsy Network, and Facebook are so intertwined in my journey, all of my comments brought floods of memories into my head. I found myself quite emotional as I reflected on my initial experiences with the support group on Facebook. The knowledge that only one year had passed since I first attended a MOONS meeting stunned me.

I have made great connections online, but the core people at MOONS at so dear to me. My head spins trying to remember coping with narcolepsy without having them in my life. Yet, that was the reality for me during the first nine months after my diagnosis. Those months were so dark and difficult, but I survived. That initial meeting inspired me to join Narcolepsy Network and to attend the national conference. While I still know that narcolepsy challenges my patience and limits every single day, I have so much more hope. My online support is part of that, but MOONS itself has done more for me than anything else. I am blessed to know these other persons with narcolepsy.

Sad and Surreal

2009-05-28T22:50:00.002-05:00

Somehow, it is still May. Although I have not written for weeks, it feels like it has been a year. While I know that I have managed life, work, home, and health reasonably well, I am frustrated that I have not found time for me. I need to blog. I need to exercise. I need to practice yoga. Thankfully, summer is literally around the corner. My primary personal goal is to set clear patterns for those three things for me.

Even though I have coped with my narcolepsy well, many moments overwhelm me. One happened yesterday. I left home at 7:20 AM, and other than a brief 45 minute stop for dinner, I did not return until 10 PM. In the midst of it, I honestly worried that I would have a sleep attack. Gratefully, everything went well, and I found a second wind.

Today was a radically different situation. Even though I had Monday off, I found myself stunned this morning when I remember that today was Thursday. I honestly felt like Tuesday and Wednesday last for weeks. Yet, today was the longest day yet. Much of the morning went well, but in my afternoon class, I led a discussion during which MANY of my boys attempted to fault a female character in a novel for a rape. I was and am aghast. Although the group has certainly had moments of sheer male stupidity, this horrific scene was completely off my radar.

We are reading Speak by Laurie Halse Anderson. The book is tremendous, and most students can't put it down. The discussion began with some wonderfully insightful comments, but a boy in the class who has often made short-sighted comments then offered that the protagonist was at fault for her rape. Assuming that his peers would immediately reject his comment, I called on two other boys. Both of them agreed with the first. The ensuing discussion entailed young women respectfully and intelligently refuting the lunacy that these boys were spewing, but the boys chose to ignore everything that the young women offered. I know that I handled the situation as well as I could, but I regret that I did not simply reject the initial comments. Unfortunately, I all too often try to be "fair." Since my own biases tend toward feminism, I refrained from shutting down this boy. Hoping that the boys would "learn" from the discussion, I proceeded to allow tremendous pain to be inflicted on the young women in the room.

When class ended the boys strolled out the door without a care in the world. Many of our young women were reeling from the boys' remarks. One broke down immediately. Two others spent 15 minutes in dialogue with my co-teachers and me. Three more wrote lengthy emails upon arriving at home. I highly doubt that the boys even pondered the class period for more than 10 seconds. Thus, in an attempt to "help" the boys, I subjected young women to tremendous pain. That is male privilege in its most sinister forms.

Thus, my co-teachers and I will adjust our schedule for tomorrow. Instead of playing our trivia and knowledge game, we will separate into gender specific groups. Hopefully, the young women can be reaffirmed by the testoterone-free period. The boys, on the other hand, should be interesting. I definitely think that those boys need to hear in no uncertain terms that rape is an evil crime and that a rape is NEVER the fault of the victim. It should be interesting.

Whacky Wednesday

2009-05-06T22:16:00.002-05:00

As much as I am getting used to time racing forward, I still find myself stunned when the opposite happens. Days when I feel like I live a week in a few short hours completely unnerve me. Today definitely fell into that category. At school today, we held a "founders" celebration for the two religious orders that started our school. I also felt like I was constantly on the go during the entire day, conversing with a colleague during my first prep, planning three things at once during our team session, attempting to organize ideas and thoughts during my second prep, processing racism and its impact with students throughout the day, assisting a few students during their homeroom time, reviewing the work of my independent study student during my lunch, and finally delving into more ideas and angst in our other class. Then, I went to lead my daughter's Poetry Club. I finished out the day by running a number of errands.

I honestly struggle to accept that our "founders" breakfast was THIS morning. Invariably, I was (and am) exhausted. And, the craziest part is that, even though I accomplished a vast number of things today, part of my brain truly believes that I should have done more. I have so many stray "unfinished" tasks, but it would be impossible to accomplish them. Not just in one day, but in a lifetime. I must work to accept that reality - my brain will never be "satisfied." It is simply the truth of my situation. Hopefully, my awareness, and ensuing actions, will keep the madness and anxiety at bay.

Flailing Frustration

2009-05-05T23:18:00.004-05:00

Knowing that I have narcolepsy, I work diligently to have realistic expectations for myself. Certainly, I continue to overestimate (grossly) what I can accomplish - in a day, in a week, in a month. That said, though, I have gotten significantly better both in my estimation and in my acceptance of what I can accomplish. Nevertheless, I continue to have difficult and aggravating experiences focused on my inability to do even simple tasks.

Over the past weekend, I desperately wanted to clean our home office - finally. It has been a major goal for months. I will get close, but never quite finish the job. Even with the exhausting week that I experience at the end of April, I made some progress on Saturday. Sunday proved to be a whole other matter, though. I awoke with a tremendous headache which only got worse. I did try to continue my efforts in the office, but would find myself aimlessly drifting from one thought to another. Rather than being able to clean a small section, I struggled to form even basic thoughts.

Eventually, I found the pain subsiding. But, I was not content to clean one or two more things. Instead, I worked to restring one of our cellular shades. I quickly figured out what I needed to do, but the process itself was tedious and nerve-wracking. When I finally finished, and had (stall HAVE) the shade working, I went to see if my wife wanted to look at it. Turns out that it was 1 AM. I had completely missed my first Xyrem dose - oops. I am proud that I got the cellular blind ready for us, but I know that the price I paid for that was likely too high. I functioned decently on Monday and today, but I also know that I was not entirely comfortable with my focus. My judgment and cognition go out the window when I am overly run down. I just wish that I could be lucid when I WANT to be, but that is no longer reality.

Thus, I must continue to work on acceptance and balance. Those things will come with time. I am stunned at how well I do on most days, but that does not mean that I have to like that reality.

May Magic

2009-05-01T17:33:00.002-05:00

Yet again, time has had its way with me. My calendar seems to jump entire weeks at a time. Thus, May has arrived and my brain is still in the middle of April. The frenetic pace of school has not lessened, rather it has picked up. Today, I managed to finish putting comments on numerous papers, to copy our quiz, to help plan the day, to re-write the same quiz, and to connect with a number of students. The added "bonus" is that I did all of that during a day that was shortened for various reasons. We also had conferences yesterday, and my daughter had to go to the ER the night before. So, I slept little on Wednesday, talked to parents for hours on Thursday, and eked every ounce out of my body on Friday. While I am grateful that I can handle a day like that, I also know that I will be worthless for much of this weekend.

I also realize that I am getting more and more run down as the end of the school year approaches. I find it fascinating that I am beginning to know myself and my body well enough that I can recognize when I am pushing too hard. Unfortunately, I am still too stubborn to do much about that. I know that I will continue to push when I should stop - like I did today. I "survived," but that came at a price. The lingering congestion and illness that I seem to still have will worsen. There is no question in my mind about that. I also know that I will do my best to exploit the boost I get from the improving weather.

While temperatures did dip during the past week, the averages are now consistently in the 60+ range. That is glorious. I have come to abhor winter. The warmth coupled with the ever growing daylight definitely lift my spirits. Of course, that too has a down side. More light means that I am tempted to push myself even more. Even the idea of May gets me pumped. More daylight and milder days portend summer's arrival. Summer means a time to re-charge and MITY. Yet, my extroverted, crazy brain transforms those good vibes into an insane drive to complete everything before the school year ends. While the idea is lovely, the reality is that I should NEVER listen to grand ideas like that. My body can't handle them, but my stupid brain never seems to remember that. Hopefully, I am gaining enough wisdom that I will intervene on my own behalf. Nonetheless, I am thrilled that I am entering the final month of school, even if it means that I somehow lost the latter half of April.

Wrung out, but Writing

2009-04-23T23:24:00.002-05:00

I don't have much energy because it is late, but I have felt the need to write for days. I am stunned how often life's whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar - my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.

Regardless, I have survived another week. I have a mountain of work this weekend - correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair's summary of the meeting (with only 10 minutes remaining) a slew of "issues" were raised - things we have discussed ad nauseum over the past two years - that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.

Fabulous Friends

2009-04-19T20:32:00.003-05:00

I continue to struggle with my energy, but I had a great boost today. Even though the early afternoon was filled with drizzle and clouds, I found sunshine in a Perkins in Edina! Four of us met there today to do some MOONS planning. While I had many other things that needed doing, I know I made a great choice today. Seeing my friends from the MOONS group made my heart soar. Even better, we actually got somethings done. Typically, we banter and chat so much we rarely get anything decided.

Today, we generated ideas for some social gathering. We also decided to vary our meeting times. In an interesting irony, when MOONS-MN first started, most PWNs present wanted to meet at 10 AM. While that seems crazy to me (and the other planning folks - we barely make it to the meetings on time), we wanted to serve the group. Lately, though, we have heard that some would like a later meeting time. Thus, we will still meet at 10 AM on May 30, but our meeting on September 12 will begin at 4 PM. The plan will then be to alternate between the two times. It should be fun.

As for the "social" ideas, we are hoping to have a yoga session (that could become a PWN yoga class), a bowling event, a family picnic, and another movie session. All of the events should be great, but the best part is that we are striving more and more to provide opportunities for PWNs to gather with each other and to share stories about this crazy condition. I also love that we spent time thinking about bigger issues, including suggestions for both Narcolepsy Network and for physicians who treat people with narcolepsy.

Still, the best part of the afternoon was spending time with friends who honestly understand the difficulties and frustrations of this disease. It is so hard to explain to people why I seem to be dragging or how hard it is to form a thought at times. With my PWN friends, we don't even owrry if someone drifts off, and we all regularly ask to have things repeated because we missed them. One of the strangest realizations of my day is that I "knew" none of the people I met with today one year ago. I still marvel at how much has changed in just 365 days!

Wild (wonderful) Week

2009-04-17T22:19:00.003-05:00

I certainly am glad that this past week has reached its conclusion, but I am also thrilled to have lived it. While I did not "enjoy" missing my wife, having a sick daughter, teaching down one team member, enduring redundant questions, or short changing my sleep cycle, I found myself giddy at times today because I did weather the storm. Many moments of anxiety and frustration welled within me each day, but I rode them and continued on.

As I regularly remind myself, I have a lifetime of learning ahead of me to understand how to live with narcolepsy. That does not mean, though, that I must forgo recognizing an important milestone for myself. Typically, when my wife is away, I spiral down throughout the experience. This time, the trend went in reverse. The weekend in Duluth drained me, and my lowest point of the week might have come on Sunday night or Monday morning. Even though my energy level dropped all week, my spirits rose. Yesterday was the most productive day that I had all week. I also have high, but realistic goals for tomorrow.

One incident does not a pattern make, yet I do think that my mood is a strong indicator that I am moving in the right direction, at least from a mental health perspective. Invariably, I still have too much to do. I will also continue to beat myself up on a daily basis. The self-loathing has diminished greatly in the past year, and I am getting slightly better at saying "no" and at asking for help. Perhaps, I will eventually reach a point in time when I am at peace with myself. Until then, I simply need to remember that I am finite and can only do my best (as opposed to "the best").

Searching for Sleep

2009-04-16T20:04:00.002-05:00

Last night, I was determined to be in bed at 10 PM. No matter what, I knew that I needed to restart a saner sleep routine. Sadly, I failed. In fact, I completely obliterated my bedtime. I decided to do "one more thing." Unfortunately, that final task took about two hours to complete. Then, I decided to check in with some friends. That somehow led me to attempting to do even more work.

In the end I faded in an out for hours. At 4:30 AM I actually made it to my bed. While I had fitful sleep sitting on the couch, I did get a solid hour and a half once I made it to my bed. Thankfully, I help it together through my day. My daughter was sick today, which turned out to be a blessing. I was able to move more slowly as I got ready. When I did get to school, I knew I was exhausted, but survived the day. My associate principal allowed me to miss a school wide event. Then, I used the energy of being with my students to carry me through the actual class periods. Even so, I clearly struggled to form thoughts. I am getting better at identifying when my narcolepsy is making my life difficult. I definitely blanked out a couple times as I tried to help my students understand.

Even more unnerving was the trip home. I again knew that I would make it, but I also had clearly reached my limit. Fortunately, I can take roads with little to no traffic. I was not dangerous in any way, but if I had been forced to stop for an extended period, I might have drifted away. Upon getting home, I did get some cleaning done, but I also have been battling my sleepy brain the entire night. I felt that the best thing would be to push myself until 10 PM tonight. Then, I can begin reestablishing my "normal" sleep pattern.

While I do not want this to become a regular occurrence, I am grateful that I am becoming stronger mentally and physically. I also appreciate that I am learning to adjust when things are getting desperate. I firmly believe that I would have simply gone to the school event in previous years, even though it would have drained me to the point of my narcolepsy becoming dangerous.
Thankfully, I am maturing in my outlook. I have nothing to prove to others. I do need to take care of myself so that I can stay safe and protect others as well. This journey never will end. Narcolepsy is funny that way. Still, I am thrilled to have the chance to experience it.

Running Ragged

2009-04-15T22:03:00.002-05:00

Driving my car today, I wondered how coherent I actually was. I did not doubt my ability to navigate effectively and accurately. My confidence was also high in my driving skills. At the same time, I am painfully aware that I am fuzzy on the exact details of the journey home. Plus, when I finally got here, my phone conversation with my wife is now the vague recollection of an echo. In that bizarre balance that seems to becoming my norm more and more frequently, I accomplished many things today, but I also used every ounce of energy that I could muster.

I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter's school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.

Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are "vital," both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.

I did have one moment today that was a "favor" for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.

I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.

Nasal Nightmare

2009-04-13T14:13:00.004-05:00

Typically, I avoid discussing my other health woes here, both because they are minor in comparison to my narcolepsy and because I rarely can do much about them, so I avoid dwelling on them. That said, my sinuses threw me a curve ball today. I have had chronic sinusitis for years. I actually think that it is connected to my compromised immune system (and thus my narcolepsy), but I have been "dealing" with my crazy nose for years longer than I have been managing my narcolepsy. Every day, I rinse my sinuses in the morning and at night with a saline solution (SinusRinse made by NeilMed) and with an antibiotic solution. Things have improved since I started that routine in 2004, but I still have regular swelling and inflammation throughout my sinuses.

Every month to two months, I go see my ENT. He is great and I appreciate his candor. Typically, he cultures my sinuses on the left side (which is often worse) and then literally vacuums out my sinuses. In the last few years, I have not had many infections, and my sinuses have looked "better." They are still constantly swollen, but it is less than in the past and they are usually limited in their inflammation.

Today, I was expecting things to follow the usual process. I had a horrid cold in March, and I know that it took me weeks to shake it. I still have had a lot of congestion, but my nasal discharge has looked better recently. While I never feel "great," I knew that I was on the upswing for my sinuses. When my ENT looked at my left side, he thought my sinuses looked better (still swollen, but not inflammation and clear mucus). He was actually considering NOT doing a culture. Then, he looked at my right side. Apparently, it was awful. He vacuumed some, then cultured, then vacuumed more. THEN, he switched tips to "get around the corner." Less than fun, I assure you.

The silver lining in this is that I likely do have a sinus infection. We will see what the culture says, but the infection is probable to say the least. That means that some of my current struggles with energy are a result of my body battling a bacterial infection. It sounds bizarre to be "glad" about that, but I have been so wiped out this break that I was worried that my narcolepsy was getting significantly worse. That still might be the case, but learning that my immunue system might have been in overdrive for other reasons does give me a bit of hope. If I am indeed infected, the ensuing antibiotic will likely perk up my system. I could definitely use an infusion of energy. I will say that it is the first time I was genuinely excited about a possible sinus infection. The other bright spot is that I am managing my narcolepsy well enough that if this is a sinus infection, it did not completely knock me out as sinus infections have done in the past. Apparently, I am just giddy about bacteria growing in my right ethmoid sinus! Yippee!

Stunning Start

2009-04-12T07:45:00.002-05:00

One year ago, I found myself struggling and lost in my handling of my narcolepsy. While I had clearly identified that I needed to make some changes at my job, I had yet to connect in a meaningful way with any other people with narcolepsy. I knew that living with this condition was difficult, but had no context for my situation. Was it normal to still feel this run down? How much did my doctor honestly know? Where any of my other "health problems" connected to my narcolepsy? The list of these questions was endless, but where could I even start to get answers. Worst of all, I knew I needed to process my own feelings and frustrations, but I felt like burdening my wife would be wholly unfair. She is my partner, lover, and best friend, but she could not be the sole repository of my stress and anxiety. I also had my Men's Group, but was finding it harder and harder to discuss my struggles, because narcolepsy sounds ridiculous when you explain it - I am tired during the day, and I don't sleep well at night. It invites the suggestions of getting more sleep, and the sympathetic replies of "I am tired too." Then, in a whirlwind week, everything changed.

First and foremost, I "discovered" Facebook and MySpace. It may sound insane for a forty-year-old to claim that social networking saved his life, but I am living proof. Since my daughter's school was moving to one-to-one computing in the middle school (each student has her or his own computer) and because of my own interest in using technology in the classroom, I thought I should start understanding what social networks truly were. I played with my profiles for a few days, but then I wondered if other PWNs could be found in either one. Turns out, I found support groups in both locations. The Facebook group Narcolepsy Support Group became my home away from home. I think there were around 400 members when I joined. As of today, the group is a single person away from 1000 members. Touching base with other PWNs had a huge impact.

In fact, the great irony is that the member who literally joined next on Facebook was a former student at my school. I could not believe it. I sent her a message on Facebook, feeling horribly awkward. But, within hours, we were trading emails since she too had narcolepsy, as did other family members. She has subsequently become a major factor in helping to lead the local MOONS-MN support group. So, Facebook not only put me in contact with other PWNs, but also provided me with my first face-to-face interaction with other PWNs.

The best was yet to come, though. The same motives that drew me to Facebook also had me curious about blogging. Since I was planning to use it in my classroom, I thought I might start a blog. After looking for other blogs about narcolepsy, I realized that only a handful of PWNs were sharing their stories. But, it was also clear that writing about it was helping the PWN authors and their readers. Thus, Narcoleptic Knights was born - one year ago today. I love that this one year anniversary has fallen during my break week at school. I have been privileged to blog every day over this hiatus. It has reminded me how important it is for me to write about my condition. Whether I am up or down, I need this release.

I know that some of my depression and stress over the last few months has been the limited blogging that I have done. Seeing that string of months with only two or three posts per months saddens me. I know that I was doing other things that needed to be done, but it reminds me of how far I must go to find more equilibrium in my life. It also blows my mind that I could go 3-4 months writing only a handful of posts and still average a post every three days for the year. I do remind my students regularly that I am overly verbose.

The final piece that makes this blog so important to me is that so many people have come here to read it. In one year, Narcoleptic Knights has had 891 unique visitors from 33 different countries and at least 47 regions/states within the U.S. There have been over 3300 total visits and still about a quarter of the visits come from new visitors. I am awed and honored that people from around the globe would spend even a few seconds looking at what I have said here. I do hope that I have helped some of them. At the same time, I want you all to know that you have helped me (and continue to help me). By visiting this site, you motivate me to continue writing. I have mentioned it here before, but I have never been good at keeping a journal. I always start strong, but rarely do I even make it a month when I try to regularly record my thoughts. But, because of the visitors to this blog, I have not only reached the one year mark, but also I am heading into the second year of Narcoleptic Knights with more fervor than ever. Whether you have left many comments, one comment, or simply read a portion of a post, please know that I am eternally grateful. I often avoid injecting my religious faith into this space, but it is not lost on me that today is Easter (at least it is for Roman Catholics and Protestants). The fact that we are honoring Christ re-born on the day that my blog reaches it one year mark (and it is a huge piece of my re-birth) is a gloriously wonderful thing. Thank you all for being a part of my life.

Suddenly Sunny

2009-04-11T09:27:00.002-05:00

I awoke this morning with a bit more spring in my step. I am still exhausted, and I need to work on balance, but the world seems brighter today. It doesn't hurt that the sun is out in Duluth today, but the bigger reason is that once again fellow people with narcolepsy have lifted my spirits. Last night, we went to see my mother and my grandmother. It was good to spend time with them, but everyone is also struggling. My grandmother's health has both of them concerned and on edge. Thus, my stress level was higher when we returned to the hotel around 9 PM. Fortunately, I remember that a friend of mine that I met through the Narcolepsy Network had planned to chat with me on Yahoo Messenger. Sure enough, she was there, but soon others joined us.

The webmaster for the Narcolepsy Network is fantastic, as a person and as a web guru. As a result, he has been able to garner the assistance of a number of quality individuals around the country to help moderate the forums and to improve the site. I feel lucky to have been included. Thus, my "brief" chat with a friend transformed into a full-fledged planning session involving people in Minnesota, Michigan, Washington (state), and Ohio. We were discussing ways to promote and aid local/regional narcolepsy support groups by providing them space on the overall Narcolepsy Network site. The group out in Portland, Oregon (and Vancouver, Washington) already has material up in this fashion for their P.A.N.E.S. & V.A.N.E.S. group. The idea is absolutely thrilling because it will raise the profile of these groups (including the MOONS group I help organize), and those groups will also be more prone to connecting with each other.

Beyond the support group planning, we also discussed ways to make the overall site and forums better. While it is a team effort, the driving force IS our webmaster. Seriously, the guy is a saint (and a rocking musician). One element that he raised last night is trying to get the doctor who runs our Minnesota group onto the forums on a regular basis. I think it is brilliant. She is likely one of the best neurologists in the country, particularly for sleep medicine. But, more impressively, she genuinely cares for PWNs and wants to do everything she can to help them, even when they are not her patients. Hopefully, she will be open to establishing a presence on the Narcolepsy Network Online Forums. We shall see.

Even these stunning ideas did not raise my spirits the most. The best thing about this impromptu meeting was the love and respect that my friends sent my way. They have all been working like mad to improve elements of the Narcolepsy Network sites, while I have done a few things here and there. Rather than be frustrated that I am not doing more, all of them were overwhelming grateful for what I have done. They all get that I am doing the best I can while balancing family, work, volunteering, and my own health. Since all of them are also PWNs, they also know that the condition ebbs and flows. Each person was overjoyed that I was "back" in more of a groove, rather than chastising me for what had not been accomplished. I am certainly blessed to have both the Narcolepsy Network and these quality people in my life.

Friday Fury

2009-04-10T16:40:00.003-05:00

I long for the day that I will be "ready" for a day. My sister, my daughter, my brother-in-law, and I were scheduled to leave at Noon today. We are spending Easter weekend in Duluth, hoping to see my grandmother and my mother (who is in town to help care for her). Even though we had a plan, I wound up derailing it for a time. Everything was fine, but it bothered me that my inability to get things done, or to garner any energy, forced others to wait. The true "problem" began on Thursday.

Invariably, I ran myself ragged yesterday. I did enjoy my abbreviated massage, and the chiropractor helped. After that, though, I headed to the University of Minnesota. My wife and I had a fun (but dorky) date. We met at her office to attend Grand Rounds. Dr. Mike Osterholm was speaking about influenza pandemics. It was incredible, but going to that meant that other things did not get done. I did rest at home for a time, but then I had to get my daughter. After that, I tried to do some cleaning around the house. Things look worse now, but my wife seemed to think that it was progress. After working for an hour and a half, I had to head to my daughter's school for a three-hour meeting. I got home at 10:30 PM. Needless to say, I had no energy for any more cleaning, or for packing.

Then, when I woke up this morning, I spent an hour and a half getting work done for the previous night's meeting. I did do some additional organizing of computer files (and dumping of files to clean out my laptop), but I was not ready to leave until nearly 1 PM. Again, it was not a huge problem, but I feel such internal pressure in those situations. I abhor inconveniencing others. Fortunately, I held things together. We arrived in Duluth around 3:30 PM, which was actually perfect. I just hope that I can let myself relax over the next few days. I remain vulnerable to my internal messages about doing more and unachieving.

These are the narcolepsy moments that I truly dread. I am doing "fun" things, but the energy required for them also drains me. The balance of living with this condition is often maddening. I am grateful that my wife and daughter remain understanding. I need to keep working on giving myself more of a break when I am in the midst of energy struggles like I am having this week. The one other tough part, though, is that my wife is out of town from tomorrow until next Saturday. Thus, I will get home on Sunday with professional work that needs to be done, volunteer work that needs to be done, and housework that needs to be done. I will face all of that as a solo parent and as a run down person with narcolepsy. It will be fine, and I will get done what I can, how I can, but I need to remember that I am doing a decent job, even if things turn out mediocre at best. In the end, I need to remember to breathe, while I handle each thing one step at a time.

Battling the Blues

2009-04-09T08:50:00.002-05:00

Vacations and breaks are good and bad for me. I definitely needed to rest and relax, which this time off is allowing (at least in a small way). The problem, though, is that I continue to feel compelled to do things. When I have free time, my brain continues to race with everything that is un-done. That might sound odd, or even insane, to some, but it is the best way that I can describe what happens inside my head. When I have time to think, the tapes in my head regurgitate each task that I have yet to accomplish. Often, the resulting effect is stressed out paralysis - which does little to relieve the overwhelming anxiety. Needless to say, I know that these irrational thoughts are one of the largest burdens that I will face as my life moves forward.

A portion of this self-defeating trait must be genetic because I know that my mother, my grandmother, my aunt, and my great-grandmother all have (or had) the same types of tendencies. Clearly, it is also learned behavior. Watching all of those women in my life push themselves certainly rubbed off on me. My father also never stops moving, although I remain convinced that his behavior is also a way to cope with undiagnosed sleep issues (quite possibly narcolepsy). The third element, though, is me. I do know ways to cope with these messages, but I tend to let them drift to the wayside as I get busier (and more tired) during the school year. The best way for me to cope with this proclivity for irrational delusions about my work load is yoga and meditation. Closing following those two techniques is exercise. When I am stronger and more balanced mentally, emotionally, and physically, I am better able to fend off and ride out the onslaught of "missed opportunities" that can crash over me when I try to have down time.

Unfortunately, I do let yoga and exercise disappear when I am pressed for time and energy. Both do make me stronger and improve my endurance, but they require time and physical strength too. Rarely do I prioritize my need for them over my wife and daughter, or my job. In this on-going journey of narcolepsy, I need to press my personal agenda. If I do not, it will hurt me, my family, my colleagues, and my students. The reality is that things that make me more complete need to be at the top of my list, rather than in the "if I have time..." category. The truth is that I will NEVER have time for that category.

I find it ironic that even now I am writing this blog post to keep the negative messages at bay. Already this morning I have conceived of more work to do than I could hope to finish in a week. But, because I am run down and still recovering, the messages flood my brain - clean the fish tank, clean the kitchen, clean the office, sort the mail, organize the pictures, re-organize the computer files, get the books moved at school, write up the MLA formatting rules, vacuum the house, change the cat litter, do the laundry, pack for the trip, get the money entered, finish the taxes, and those are just the things that I need to do "today." Typing that list scares me because part of me truly believes that I should do ALL of that today. Then, another voice reminds me that I can't do it because of my narcolepsy and because I am weak. I know that all of that is irrational, but when I am this tired, I struggle to fully accept the irrationality of those ideas. Thus, they feed my depression and anxiety further.

In the end, I simply must embrace this portion of my journey. Playing ultimate (and my long walk on Monday) reminded me that exercise does help me. Slowly, I will find a way to work yoga and exercise back into my routine. Poco a poco, I will make the changes that I can, both to live a more balanced life and to recognize that I can be a person with narcolepsy and still have joy and contentment. Likely, the path will extend to the end of my time, but at least I know I am moving in the proper direction, even if it is one slow, small step at a time.

Washed out Wednesday

2009-04-08T19:12:00.003-05:00

It always throws me when my body "catches up" with my life. I had a great weekend, seeing friends and playing a small amount of ultimate. I also enjoyed my visit to my friends' home in Maryland. The added exercise in White Flint would have been nice to forgo, but I know that it too was beneficial. My travel yesterday was harried at times, but I got home safely. So, I awoke today thinking that I would be ready to get into a groove preparing for work material, cleaning the house, and prepping for some events at my daughter's school. I was completely wrong.

Although I could feel the wave of fatigue as early as Sunday, it hit me full force today. I struggled to get out of bed, even with my stimulant. Then, as I was about to leave to do my limited errands for the day, I learned that the acupuncture, massage, and chiropractic appointments that I believed were scheduled for tomorrow were actually today - yippee. Thankfully, I will still get to have a massage (a shorter one) and chiropractic tomorrow, but the disappointment and embarrassment nearly tanked my day. Poetry Club at my daughter's school went great, but I got home completely exhausted. I even fell asleep watching The News Hour.

I am hoping that the recovery process will only take a day or two. I truly can't afford to feel like this when school restarts next Tuesday. I should not be surprised when things like this happen, but I am. I forget how much energy traveling can consume. I also did spend most days over the weekend and in Maryland "on," meaning that I did not rest much. That said, it still stresses me out that I am nearly worthless today. I want to do more around our house. I also need to get caught up on school work, finances, and our taxes. Narcolepsy always seems to have one more twist waiting for me.

Tuesday Travel

2009-04-07T08:22:00.003-05:00

I head home today. I always find it fascinating that no matter how much I enjoy traveling, heading home is also exciting. Even though I was with my wife all weekend, I missed being with her the last two days. I also have missed my wonderful daughter. Knowing that I will see them both later today excites me to no end! I also enjoy the "process" of traveling.

While being at the whim of a transportation company can drive many people up a wall, I actually enjoy it. I know that some of that is my acceptance of narcolepsy. In the same way that I can't control the way my body responds on any given day, I also have no power over the functioning (or non-functioning) of a plane or train or bus. As a result, I am able to let go and simply accept what comes. It has taken a long time to reach that place. I used to be furious when trying to go somewhere if things went awry. But, it is one benefit of chronic illness - I daily have to face "things" not going the way I want them too. If I tried to fight every one of them, I would be insane by now.

Even yesterday was a great example. A dear friend and I planned to meet for dinner. Since I am in Maryland and can avail myself of decent public transportation, I took the Metro red line to meet him. I knew the trip would take 45 minutes, but that was fine. I was not inconveniencing the friends putting me up, and I could enjoy the ride. The Metro went well, and I arrived in White Flint with time to spare. The troubles began when I walked out of the Metro station. I seem to have a knack for always guessing the wrong way to go. I was meeting my friend at the White Flint Mall, but walked in the opposite direction. When I eventually arrived back at my starting point, I again chose poorly, but did manage to find the mall while working my way back to the start once again. In total I walked for an hour, probably covered at least 3 miles, wasted most of the energy that I had, and was a half-hour late in meeting my friend. While I was definitely frustrated, I did keep both my self-loathing and my ire at the lack of signage in check. I even found a book for which I had been searching. Even better, I bought it at Barnes & Noble rather than the Border's in the White Flint Mall. I do like Border's, but they had irritated me of late because they did not have this book when they promised that they would. Had I not done all of that walking, I might purchased the book at Border's instead (which would have bothered me), or worse, I might not have found it at all because maybe the White Flint Mall Border's also would have let me down.

I proceeded to have a fun night with my friend. He then drove me back to the place I am staying. That was good both because we got a chance to talk even more and because I don't know if I would have been alert enough on the Metro to get off at the correct stop on the way back. Gotta love narcolepsy, huh? Bottom line, I know that I need to appreciate the blessings and gifts that do come my way, even as I accept the hiccups and disruptions that accompany the good. Nothing is perfect, nor will anything ever be. But, I have so many blessings, and for that I am grateful. My constant sleepiness will be a bane for the rest of my life. I can't change that, but by accepting it (like the delays that may happen as I travel home today) my life will be a much saner and much better experience.

Lazy Lounging

2009-04-06T10:37:00.003-05:00

After a fantastic, but frenetic weekend, I find myself enjoying a relaxed day with friends. My wife flew home yesterday (and I miss her terribly), but I am staying through Tuesday with some of of my college friends. We had a wonderful dinner last night and play a super cool game - The Settlers of Catan. It is sold in the U.S. by Mayfair Games, and I was impressed looking at some of their other offerings too. Likely, one or more of their products will be appearing in my own home soon.

This morning, I slept in for the first time in weeks. My body still is quite angry about the beating that I gave it on Friday and Saturday, but it was also good for me to learn that I can still do some physical things. I am not obsessing over the possibilities (which is good), but I do have some new motivation to find an exercise routine. It was tremendously humbling to realize how much endurance and strength I have lost in the last few years, but I went into the weekend knowing that such epiphanies awaited me. Rather than feeling depressed about what I couldn't do, I am pleased with what I could do. I still made some good plays. I even ran with a person or two who is likely half my age and NOT a person with narcolepsy. So, that has to count for something. I even scored a goal, threw a score, made some defensive plays, and had at least one impressive catch. That truly is impressive for a 40-year old man with narcolepsy who has done virtually no physical exercise (other than lots of walking as a teacher and yard work at home) for over 8 months.

Another positive from the weekend is that I wisely decided not to play yesterday. We had at least one game guaranteed on Sunday. It turns out that the team we played was super spirited too. While it would have been a blast to play a few more points, I know that today would have been vastly worse if I had played. When I awoke on Sunday morning, I knew that I had nothing. I find it difficult to describe the sensation, but essentially I knew that my "tank" was empty - even the reserve supply that exists for fight or flight. Once my amphetamine kicked in, I was functional and could have played. But, the exertion would have made me even more washed out today. Narcolepsy tends to manifest differently for so many people. I am sure that when I push as hard as I did this weekend - mentally and socially, I use up energy that is supposed to go elsewhere in my body. Last year, I got sick the few times that I pushed through the way that I felt yesterday. Thankfully, I am getting better at listening to my own body.

The finally irony of today is that it is gray and rainy in Maryland. Rainy stopped literally minutes before our first game on Friday. We then got three perfect days for ultimate. Well, they were a tad windy, but the sun and warmth were glorious. Now, when the tourney is over and most of my friends have gone home, the weather is gloomy and colder. But, that is also a great reason to lay low and rest. I don't feel like I should be running around to "see the sights" in D.C. with weather like this, but had the sunshine of the weekend continued, I definitely would have felt some level of guilt. Thankfully, I can simply enjoy the presence of my good friends. I will also get a chance to see some other friends this evening. I must admit that this is a great way to spend my spring break.

Sunny Saturday

2009-04-04T21:52:00.002-05:00

While my body is exhausted, I have had a wonderful day. Today was day two of the annual WAFC Fools Fest. We still have not won any games, but we staged a remarkable comeback in our final game. We were down 8 to 1 at the end of the first half, but only lost the game 14 to 10. I even played a couple of key points in the game. We also had a glorious time just being together.

One of the things I love most about ultimate is that so many excellent people play the game. One of our pick-ups is an incredible player and person who goes by School. He plays regularly with some of our Drew Alums, but he fits the team perfectly. While I connected with him yesterday, I had a stellar conversation with him today. It is moments like that which I will miss the most, talking to a quality person while also have a grand time chasing plastic.

The good thing is that I can still play ultimate periodically. Perhaps a pick up game here and there coupled with a few more Fools Fests will tide me over. At the same time, I know that coming to this tournament only underscores why I can't continue to play club ultimate. My narcolepsy does not directly impact me on the field, but the lack of exercise time is a secondary factor. Without the chance to work regular exercise into my limited schedule, I know that my body can take no more than the handful of points that I am playing. That said, I am likely even trying to do too much as it is. In our first game, I played two points in the first half. During the second one, the disc turned over many times. By the end of the point, I struggled to walk off the field. It took me about an hour to recover from that one point. Talk about humbling!

Still, I know that I did the best I could today. I also know that some of my sideline cheering helped others to play with more fire and energy. I do hope that I can find a modest exercise routine, but I also know that the process of establishing it will come with time. Narcolepsy can be so frustrating, but it continues to help me to appreciate patience and grace on a daily basis.

Exhausted excitement

2009-04-03T22:03:00.002-05:00

I am rapidly approaching the one year anniversary of this blog. One key event reminding me of that reality is the annual WAFC (Washington Area Frisbee Club) Fools Fest. Today was the first day of the tournament. One year ago, although I knew that things might be getting better at my job, I felt tremendous stress from my narcolepsy. I also did not play in the tournament because my knee felt like a disaster. I honestly believed that knee surgery was in my future.

Fortunately, some physical therapy significantly improved my knee, and I eventually found MOONS-Minnesota and the Narcolepsy Network. But, immediately after last year's Fools Fest, I began exploring Facebook and MySpace, finding my first sources of narcolepsy support. Then, I began this blog, and my life has improved significantly.

Many of the things have brightened for me in the last year, but others have dimmed. One of the most difficult "losses" is the reality that I cannot play ultimate frisbee again for my competitive club team. The time and energy required is more than I can afford to expend. While I know that my decision is absolutely correct, I continue to feel the emptiness that it leaves.

Thus, this year's Fools Fest has been on my mind as this event has approached. I had desperately hoped that I could play some this year, but my complete lack of exercise has had me worried. Today, the day of reckoning, finally arrived. Yesterday, my wife and I had a much longer travel experience than we had planned. Our plane had engine problems, forcing us to arrive hours later than we had planned. We did get sleep, but it was the fourth or fifth day in a row that I only got in one Xyrem dose.

When play started, we only had a handful of men. I played 3-4 points in the first half and nearly collapsed. Fortunately, we picked up a few more men, but I also recovered and continued to play. While I am sore tonight and only played 4-5 points per game, I am overjoyed that I played fairly well today. I threw for a score and managed to score a goal. It was wonderful to discover that I still have decent ability. I do not have nearly the stamina that I once did, but I held my own on the field. We will see what tomorrow brings, but it is refreshing to know that I can still enjoy this fantastic game, even if it is in limited doses.

Surreal Saturday/Sunday

2009-03-31T00:07:00.002-05:00

Surreal is literally the best word that I can conceive to describe the bizarre reality of the past weekend. I arose on Monday morning feeling like it had been 2 weeks since I had been to school, yet it had only been two days. The entire weekend was a constant series of frenzy and activity. My wife and I went on a lovely date on Friday night, after I spent a few hours doing work at school. We also got the oil changed in one of our cars. Then, Saturday included an oil change for the other car, tons of school planning and work, a family dinner, church, and laundry. Finally, Sunday was my daughter's prelims for swimming (she was incredible), a fun lunch with friends, more school work, and house cleaning.

Somehow, I survived it all. I felt spent by Monday morning, but I also knew that I could survive. And, I did. I need to keep striving for balance in my life, but I also realize that the ebb and flow of the universe will not always make balance possible. As a result, I need to embrace times like this weekend, while knowing that I did my best. Sometimes, like this weekend, most things will work out. Other times, nearly everything will fall a part. Regardless, I need to push forward. Perfection is an impossible ideal, and I hope that I will one day be able to say that (or write it) feeling it in my core. I take small steps each day, but the journey will span my life.

Midnight Madness

2009-03-25T00:27:00.003-05:00

Once again, I am up far later than a PWN should be. Oops! Life continues to surge at a break neck pace, yet I am surviving. My daughter had a horrid cold at the beginning of last week, and I promptly caught it. I came home early from school last Wednesday and immediately got worse. Somehow, I managed to limp through Thursday and Friday, not only getting to school, but also teaching decently. It was stunning to realize that I could feel as bad as I did, but still get to work and perform adequately. I must admit that I felt a bit of pride in being able to do that. Of course, I also questioned my sanity, particularly on Friday when my morning dose of cold medication did not play nicely with my stimulant. The chest pains and racing heart had me a little worried, but I got through it.

This week has been better from a health perspective, but today was difficult personally and professionally. We have been discussing a change to our cell phone policy and our iPod/mp3 player policy for the past two years. March 24 was finally the day of our "listening session" to hear faculty feedback. Needless to say, no one tends to be more biting in their criticism than disgruntled teachers. I facilitated two sessions and felt pummled by the negative feelings of many of my colleagues. I can understand resistence to the ideas proposed, but many people went well beyond that and vented about "technology" in general. It hurt because our committee has put so much time and energy into our work, but also because I personally believe that integrating more technology into the schoolwide curriculum is vital to helping our students prepare for the future that awaits them. To have a number of colleagues disparage that idea saddened me. It also made me question whether my school is the right place for my daughter, or for me.

Sleepy Savings

2009-03-10T20:37:00.003-05:00

Somehow it is already March 10th. Time seems to spin wildly out of control, particularly when my life gets stressful. Fortunately, I survived the end of yet another trimester. I also thoroughly enjoyed Suddenly Sleepy Saturday. The movie Wide Awake was decent, particularly when one remembers that it was made for Lifetime Network. The main character is a PWN and a narcolepsy researcher. She is swept up in a thriller when someone sabotages the labs research. Much better than the film was spending time socially with other PWNs.

Interestingly enough, though, I feel like I am the one who needed a stronger reminder about the impending time shirt with the arrival of Daylight Savings Time. I had a tough time going to sleep on Saturday night. Sunday morning and evening were even worse. As a person with narcolepsy, I try to have a firmly established sleep routine. The shift of even an hour can radically alter that process. I still did not feel right today. I honestly think that I should start with my new sleep pattern the week before Daylight Savings Time. In fact I am likely going to do that for both the end of Daylight Savings Time and for next year's Sleep Awareness Week.

What shocks me in this realization is how dependent my schedule, and my life, is on routine. I have always known that I function better with structure, at least until my obsessive tendencies cause me to implode. But, the bottom line is that a set routine and pattern IS the best way to cope with my narcolepsy. I still need to be flexible enough to accept the waxing and waning of energy, but I know I need to find some semblance of structure in my standard day. That seems far-fetched given the chaotic nature of our household, but it is definitely an important goal that I must pursue.

Many MOONS Moods

2009-02-28T23:12:00.003-06:00

Today was wonderful. We had a fantastic MOONS meeting. I find it incredible that gathering with other PWNs can provide me such joy. Some of them I know, but many are still strangers to me. Yet, simply being a room and knowing that a majority of the people there experience some of the same ridiculous struggles that I endure makes me smile.

I also find it fantastic that I learn something new every time we gather. Today, Dr. Eve Rogers shared her Narcolepsy Basics talk. Invariably, she need to cut some sections of it, but everything that she was able to present was riveting. One of the most stunning pieces of information for me was the connection between hypocretin/orexin (the protein missing in PWNs' CSF) and temperature regulation. My night sweats can be unreal, and I also have periods of time that I feel feverish or chilled. Suddenly, it seems that I might have yet another aspect of my health that is connected to and undermined by my narcolepsy.

The other super cool thing is that I get to see some of these folks again next week. Tomorrow is the start of Sleep Awareness Week. It culminates with Suddenly Sleepy Saturday. The National Sleep Foundation decided to connect sleep awareness with the beginning of daylight savings time. Thus, when we "spring ahead" on Saturday night, March 7, everyone has a chance to glimpse briefly some of the fatigue and sleepiness of narcolepsy. To celebrate the day, our MOONS groups has decide to hold the first (annual) Suddenly Sleepy Saturday. We are going to bring blankets and watch a movie. We will also have some pizza and a cake (Dr. Rogers' birthday is the day before our event). While I am thrilled that we are having an "event." Much more importantly, this gathering will be the first purely social MOONS activity. I am definitely hopeful that we will continue to provide both educational and social events.

Blogging Block

2009-02-26T01:01:00.002-06:00

Somehow, another month has nearly passed me by. I am hoping to write a post or two before February also ends. I know that I need to do this, but my daily existence seems to have other plans. We will see what the next three days bring. While February generally stinks, this year seems to be spectacularly chaotic. The good news is that I continue to give myself permission to "underachieve." Unfortunately, that grows more difficult with each passing day. Our trimester ends next Friday, and the few days off will help me, but I daily find it tougher to shut down the negative voices in my head. I am well aware that I am doing the best I can, yet my constantly ebbing energy hampers me from opening myself to forgiveness.

I also find it ridiculous that I have two posts for the second month in a row. Even worse, both February posts were written WELL after my bedtime. I need to sleep, but also wanted to get something else posted before March. I need to get back into some level of routine. Perhaps, March will enter like a lamb for me. Still, I don't plan to hold my breath.

February Funk Follows January Junk

2009-02-04T02:38:00.002-06:00

It is WAY past my bedtime. Somehow, though, I am still awake. For the third night in a row, I am up past midnight. Not good. I am out of sorts and definitely "off." I am heading to bed in a moment, but I wanted to post. Stunningly, January was my worst month ever, in terms of blogging. Fortunately, the rest of my life progressed far better than my pressence here would indicate. I continue to work to reclaim my pre-break balance. I doubt I will ever fully understand how two weeks of vacation can disrupt my routine so thoroughly. That said, I remain grateful for the vacation.

I believe that I am reacquitring some semblence of order and focus. At my acupuncture appointment today, I commented that I have often felt in the past two weeks that the world seems to move at Mach 2 or 3. But, I seem to be confinded to slow motion. While the world rushes past, I find myself marvelling at the insanity of life. Alright, I must sleep NOW. I shall return (far sooner than the month that lapsed between my last post and this one).

Ebbing Energy

2009-01-11T14:03:00.003-06:00

New year, old issue. I spent the entire week reminding myself that "re-starting" is terribly hard for me. I don't regret anything from my break, but having two weeks "off" from my normal schedule was devastating to my ability to function at school and at home. My daughter was sick on Monday, so I missed the first day back. I still got up and tried to work, but I did not exert the energy that I would have at school. The rest of the week, I limped through school and crawled through my evenings. I got the bare minimum done each night, and I still have a ton to correct that I had hoped to finish over the break. Finally, I spent the entire day yesterday attempting to find some enthusiasm and verve. Didn't work. I made a small amount of progress today, but the correcting remains untouched.

My frustration in all of this is that I continue to experience the same things over and over, AND I let them get to me each time. My angst around the current fatigue is not nearly as bad as it has been in the past, but I am still upset. I am also struggling to get work done, work that must be finished soon (hopefully some of it tonight). Even as I type these words, I have more "unresolved" tasks flooding my head. I am realizing that I will be lucky to get comments on even a handful of papers. But, that will be better than nothing.

I must continue to accept what I am given and let go of what escapes me. One paper corrected is one less that I will need to do tomorrow. Plus, I made a difference for at least two students last week with the extra help that I provided them at school. Ironically, I participated in a Gallup survey today. The phone call was humorous because I felt like I was all over the place with my responses. I am definitely in a healthy income bracket and know that I live a good life, but I am also unhealthy and depressed - both because of my chronic condition and because of my anxiety. At the same time, I had to remember when I got off of the phone that I am incredibly lucky to live the life that I have. We have a beautiful house and savings. Both my wife and I are blessed to have jobs that we love, and our daughter receives an excellent education at her school. So, even though narcolepsy makes my life far from simple, I am blessed to have so much. It does not change the agitation that I often feel from my low energy, but it does help to ground me in my daily living.

Exhausted Evening(s)

2009-01-04T19:23:00.003-06:00

I know that narcolepsy tends to move in waves for me, but the last few days have been hard. I have had a decent start to 2009, but I also realize that my energy is frighteningly low. On New Year's Day, I met with my teaching team. We got a ton done in 2.5 hours. It was also wonderful to see them, but by the time I got home, I was spent. Some of my mood is a natural reaction to the end of a break. I NEVER get done what I hope to get done. Even as I work to accept my limitations, I continue to assume (wrongly) that I will be far more productive than is possible for me. I also tend to lose sight of how hard "daily life" can be. I went shopping on January 2. Spending my Christmas gift cards undid me. Three stores and a handful of decisions sapped what little reserve that I had. Even going on a date with my wife yesterday was draining. We had a wondrous evening and enjoyed viewing Valkyrie, but we got home at 8:30 PM and I faded. Today is my last day of break. I got some work done for school, but I am struggling to focus for even 15 minutes at a time.

While I understand that days and weeks like this are possible, it is still hard to stomach it. I desperately want to be productive. I work hard to celebrate the things that I do get done. Yesterday, my wife and I planned out our budget for 2009. It took time, but we did great work. I also have done a bunch of research on cell phones and the new plan we will like select within the week. Those efforts definitely make a difference in our home. And, the school work I did today is a great thing, but I want to be able to do more. I want to feel like I am making progress. Sadly, I don't. My expectations remain unrealistic, but I also seem to have times when I don't let in the joy.

A piece of this is connected to having my parents here. It is hard for me to be comfortable in my own home when we have guests. The fact that it is my own parents makes me even more uneasy. I wish I knew why I felt like this when we have guests. Perhaps, I just find it hard to relax completely when others are around. I know that I worry too much about what others think of me. Beyond all of this, though, my stomach is a mess. I am experiencing far more reflux than I ever have. I have not been good about what I have been eating, but this seems to go well beyond that. I also know that I am out of the drug that I take for reflux. I would guess that something is happening there too. All I know is that the amount of acid in my stomach seems insane. I feel bloated, but I also feel like my throat is on fire at times.

As much as I wish I had another week of break, it will be good to go back to school tomorrow. I need that to help me have routine. Breaks and unstructured time are always bad for me. Having to go to my job provides an easy way to organize my day. At the same time, I know I need to figure out better strategies to rest myself and to renew my energy. I have done good things during this vacation. I need to hold onto those memories. I also need to ground myself in the moment, even when the moment doesn't feel quite right.

Yin Yang Year

2008-12-31T22:12:00.003-06:00

Happy New Year! It occurred to me today, as I drove around Saint Paul (and the Twin Cities) like a mad man, that I should spend some time reflecting on this past year. It is breathtaking to realize that one year ago I could feel hope slipping away yet again. In fact, as I entered January of 2008, I was sure that the stimulant I was on was not strong enough. Then, when I tried amphetamine for the first time, I was convinced the wheels had completely come off of the wagon. My hands began "sweating," and I found myself in a complete spiral. Somehow, I held things together, but I also missed my most school in January and February. The dyshidrotic eczema was driving me nuts, and I seriously thought that I might need to quit teaching. I also remained completely exhausted.

Even when I got my hands under control, I had a swollen testicle again and felt horribly run down. Still, the worst was yet to come. As February ended and March began, I found myself at a low water mark. I hated going to work and knew that my classes were toxic to me. I had started on my amphetamine, but my knees were in extreme pain. My weight was barely hovering at 150 pounds. And, with the start of the third trimester, I found myself completely lost. My schedule and pattern at school had changed and it took me three weeks to get my bearings. All of it had me beside myself. Then, we went to D.C. for the Fools Fest, and the worm turned.

Initially, I was convinced it was the end of the world. I could barely walk up the hill to the fields. I didn't even go to the fields on the second day. It was wonderful to see my friends from college, but I was depressed beyond belief. It looked like narcolepsy, or my body, or something was going to take ultimate from me too. Yet, as I returned from D.C., I seemed to have a little more hope. Perhaps it was seeing our friends, or maybe it was my deepest self getting fed up, or perhaps it was the arrival of spring, but I came home with a small fire in my belly.

The first piece of good news was that my knees were okay. I needed physical therapy, but I had been convinced something was torn. Then, I found Facebook and started this blog. Suddenly, I was discussing my narcolepsy and connecting with others. At school, I finally recognized how toxic my course load was and owned it. I came to terms that I would be unhappy for the rest of the year, and that made things lighter. I also turned my focus to the new course that promised to be much better for the 2008-2009 school year (and it has been). Finally, I began, for the first time in my life, to accept that I am a finite person. I can't be all things to all people. I must be content to do what my body allows.

As the school year ended, I finally got to a MOONS meeting. I signed up for the Narcolepsy Network. I got excited that MITY was approaching. At the same time, I had to confront again and again my tendency to overestimate how much strength I had. Ultimate remained frustrating, and I never did find a way to get back in shape. Eventually, I had to step away from ultimate. I still don't know if I will be able to play competitively again, but am much more at peace with that. I also had many dark days when I turned all of my ire inward. But in processing those moments, I found more and more ways to forgive myself.

These last few months have been incredible. While there is still so much that I must learn about myself, about narcolepsy, about how to find peace, I know that I am on the right path. The most important lesson I have learned in the past year is that I can't control a vast majority of my world, but I can control my reaction to the world around me. I need to roll with the realities of my life. I need to breathe. I need to take each day, one moment at a time. Hopefully, as good as the end of 2008 has been, it is only the beginning. The more content I am, the more I am able to embrace the world.

Tremendous Teammates

2008-12-30T21:24:00.003-06:00

I thoroughly enjoyed my four days in Duluth, although the drive home was a tad taxing. We were in snow and on snow covered roads for most of the trip. Fortunately, we got home safely. One element of the entire Duluth trip (that surprised me) was how often I invoked the name of my two teaching colleagues. I know that my attitude and approach to life is significantly better. Simply put, I am coming to terms with what it means to have narcolepsy. That said, though, I know that this year has been one of my best teaching experiences because I work with two amazing individuals.

Both of my co-teachers place their students ahead of everything else. They are full of compassion and truly listen to what students have to say. At the same time, they demand excellence from every students. Both know that students have a wide range of abilities, and they lavish praise upon each one, but want to push each student to her or his best. That means even more work for the teacher, but my teammates know those efforts will make a massive difference in helping these young women and men maximize potential. Beyond all of this, they love to have fun. Our classroom constantly resonates with laughter and joy.

The gentleman who handles social studies recently became a father. I know that he will be amazing as a parent. He has lived a tough life, but constantly looks for ways to learn from his experiences. He is also a tremendous practitioner of sound educational theory. He scientifically approaches every lesson and works to match his material to his students' developmental levels. Best of all, he holds himself to the high standards that he asks of his students. Justice permeates everything that he does. He even puts his own money on the line to help his students understand the importance of justice.

Our religion teacher is perhaps even more remarkable. She is still in her 20s, but has the wisdom of a 50 or 60 year old. Her calm, sage presence draws students to her. And, she holds each student in her heart and in her prayers. Her warmth and friendliness work in stunning unison with the rigorous demands that she also puts on the students. She pushes them, but also feeds their souls. I know that these young women and men will live significantly richer lives because they had her as their teacher. Best of all, she provides our ninth graders collegiate content in a form they can grasp.

I also adore that both of my colleagues see writing as the most important thing that any of can do in our classroom. In fact I would be hard pressed to say which of us is the most demanding within our grading of the writing. Regardless, our students are getting a great education because we do work together. I feel incredibly blessed to work with these two teachers. It remains a struggle to do even this course with my narcolepsy, but the knowledge that I have these two standing with me gives me strength.

Dalliance Day

2008-12-29T21:34:00.002-06:00

What a good, but low-key (and weird), day. I got up and definitely felt better. Of course, my bowels did remind me all day that I was not completely out of the woods. Still, the fever and aches were gone - hooray! I had a small breakfast in the hotel lobby and then spent the morning doing things online. Eventually, we all headed out to see my grandmother. We had a nice lunch with her. Invariable, our manic genes all came out in someways. A few years ago, my mother, my grandmother, my sister, and I ALL tried to get things out to "help" get a meal ready. The kitchen we were in was literally 3 feet by 8 feet. Needless to say, 4 adults in that space doesn't work well. Today, it was mostly my mom and grandmother trying to out do each other, but I know that my sister and I both still feel the compulsion.

Lunch was great, though. It was leftovers from the party that I missed yesterday. My aunt came over when we finished. It was wonderful to see her too. After another hour of chit-chat, my dad, my sister, my daughter, and I headed out so grandma could do some "things" with her daughters. We headed to a local shopping spot in Duluth. It is actually a renovated brewery (Fitger's). My sister, my daughter, and I had a glorious time browsing the stories. We even did some window shopping outside (which is funny because the temp was below freezing) that lead us to some excellent chocolate. My dad called up a high school and college buddy. They decided to meet at a restaurant next to the shopping center.

The only "bad" part about my dad's plan is that it easily could have (and did) upset my mother. Their relationship constantly perplexes me. Like me, my mom seems to have extreme anxiety and tends to want to "take care" of everything. My dad, on the other hand, tends to be oblivious to how much he can upset her, or at other times purposely tries to antagonize her. Fortunately, by the time we picked up my mom, she had decided that the restaurant would be a good place to eat. Plus, my sister and I figured that she too would love to she their mutual friends. That is another trait I know that I share with my mother - the inability to allow oneself to enjoy a situation.

The dinner was good, but toward the end things got dicey. My daughter was completely out of place and wanted to head back to the hotel. Plus, my dad and one of his buddies kept talking to her, which she was not so keen about. Gratefully, we did get out of there before she completely melted down. Back at the hotel, I went swimming with her and had fun just hanging out. The hotel we are at has s'more cookouts every night. A s'more is marshmallows and chocolate between two graham crackers. Usually, you heat the marshmallows over hot coals. Not wanting to stand outside tonight, my daughter and I decide we would heat the marshmallows in the microwave in our room. Now, we are enjoying a quiet evening in the room.

Throughout the day, I did feel a bit ill still. I also knew that my narcolepsy was dragging me down some. But, I rolled with the moments and stayed present with each event. In many ways, I did very little, but I also did tons of things. I connected with people - online, in person, over the phone. I had fun in active and passive ways. I rested. I exercised (walking and swimming). It was a simple day and a great day. Far too often, those two are treated as opposites, when they are far better as synonyms. We head home tomorrow, and while I expect more tension (particularly from my parents), I also know that the journey home will be fun. I am looking forward to seeing my wife. I am also excited and hopeful about where this next year will take us.

Sick Sad Sunday

2008-12-29T10:53:00.002-06:00

Apparently, when your spouse gets sick, it means you can potentially get the same thing. Whatever messed up my wife's stomach on December 26 got me too. I spent all day yesterday feeling horrid. Thankfully, I am much better today. My bowels are still dicey, but at least I feel like I can eat something. Also, I don't ache everywhere. I think the most frustrating thing was that even extra strength acetaminophen did not seem to help - yuck!

The bright spot in the day, though, is that I simply gave into the sickness. My grandmother was having a large gathering of family. While I was sad to miss it, I didn't feel bad about that. Nor did I feel rotten about spending a day in bed. I "could've" tried to do schoolwork, but I know I would not have been focused. I simply chose to lay down and read a book. That was good for me too. As I have said so often lately, even a year ago, I might have tried to fight through the illness. But, I know enough now to realize that being somewhere absolutely miserable is not helpful to anyone, let alone to me.

Plus, I will get to see some of the folks over the next day or two. My sister, my daughter, my parents, and I are still in Duluth until tomorrow. It should be fun to have a few more low key days. I think I am also enjoying taking smaller doses of my stimulants right now. It is definitely making me more relaxed and low key. Of course, I remain convinced that I will need to return to nearly full doses when school re-starts in a week. But, that is seven days a way. I plan to enjoy my break until then!

Quiet Calm

2008-12-27T21:43:00.002-06:00

Occasionally, I am lucky enough to realize how great my life is. Yes, I have a chronic illness. Yes, many things that I loved to do have been "taken" from me. Yes, I all too often can't be the husband, dad, son, brother, friend, teacher, athlete, man, or person that I want to be. But, I am blessed. I have a good life. My partner loves me despite my many flaws. The young woman we are raising continually blows my mind with her brilliance, wisdom, and compassion. I also have tons for friends, a job I love, and innumerable joys that dancing in and out of my life.

Today has been a great day to reflect on all of that. My wife feels much better and her stomach thing truly appears to be a 24-hour bug. We enjoyed a lazy morning of getting ready for our trip to Duluth. The ride up was also enjoyable. I had rich, earnest conversations with the love of my life and my parents. Even when we arrived in Duluth and my parents began acting like petulant teens, the Bed and Breakfast we are at is one of my favorite places in all the world. Then, we had Sammy's Pizza (yum, but I do need to stop eating gluten again SOON) and had a lovely night with my grandmother, who is nearing ninety.

Now, I am in the sitting room of the B & B. My wife is resting upstairs, my daughter is having fun with my dad, I just had a lovely cup of mint tea, and many dear friends sent me notes on Facebook. My mother (oddly, but not surprisingly) is cleaning and organizing things in the B & B. It's who she is. I do hope to chat with her soon about mental health, but tonight would not be a good time. I am sure she has had some brandy, and she is furious with my dad because of something that happened when they left Portland. Hopefully, they will both enjoy each other's company tomorrow.

Maybe, what I am most grateful for tonight is that I continue to activity work to have a healthy mental outlook. So much of what I see in my mother, I also know is in me. But, I work daily to challenge those traits and to let go of the compulsion to "take care" of the world. I do hope that talking to her will get her to consider therapy and medication, but I feel grounded enough to know that I can't control what she does. I can only control my reaction. Both my parents have been driving me nuts tonight, but I still salvaged my evening. I turned my attention and energy to things that matter to me, rather than spending it on their problems. Ironically, their actions and behaviors (irritating as they are) also qualify as gifts to me. I continue to learn from them, even at forty. Granted, I am learning how NOT to act, but it is a gift nonetheless.

Family Frenzy

2008-12-26T21:05:00.002-06:00

My parents are here. Generally, that is a good thing, but this evening, my mother won't stop moving. It is great that someone is doing all of the cleaning, but I wish she could let herself relax. I must admit, however, that I am feeling minimal guilt about the situation. In the past, I think I might have tried to compete with her, but the reality is that I did WAY more than my share today. I had to do that and was proud to be able to help out, but making my kitchen spotless is simply not in the cards for me tonight. If my mom feels compelled to do it, more power to her. Actually, her actions confirm that I need to talk to her about her mental health, but that is a discussion for Duluth in a few days, or during a quiet walk next weekend.

Beyond my mother's manic antics, the day has been another eyeopener for me. I awoke this morning knowing that my wife might need me to do the shopping for our second Christmas. We had our own yesterday, opening our presents to each other and the ones from my wife's family. But, with my parents arriving last night, today was the celebration with them and my sister and her husband. Given that my wife had done virtually everything in the house during my medication holiday, I was more than willing to pick up some of the slack. Sadly, my wife needed way more from me than just some shopping. She has a stomach bug and spent the entire day in bed, other than a couple trips to vomit and a brief appearance during the gift exchange. My wife rarely gets sick like this, and part of the reason is that she abhors vomiting.

Thus, as I left on my shopping excursion, I knew I was likely doing the cooking today too. I chose again today to only take 10 mg this morning. I felt alert while driving and even decided to hit the 50% off sale at Target before getting the groceries. I got some great stuff there, then picked up some prescriptions, and finally hit the grocery store. All in all, my quick trip turned into a three hour adventure. I arrived home to a sicker wife and guests who might arrive at any moment. I got stuff put away and started cooking. My mom helped, and when my sister arrived, so did she. We eventually got everything prepared, and I took my second dose of 10 mg at 2 PM.

It blew my mind that I did all of that with only 10 mg of amphetamine. I know that I tend to respond well to "crisis" situations, but I am positive that seven days ago, 10 mg of amphetamine would have put me to sleep even if my house was on fire! This medication holiday thing borders on the miraculous. Granted, I was basically done for the day at 2 PM. Even with the second dose, I was exhausted. Still, I managed to be social and functional for the rest of the day. Since it is likely that I will be doing the driving tomorrow, I will need to consider 20 mg instead of 10 mg in the morning, but we are leaving at 1 PM, so maybe I will take 10 mg for the first dose and see how I feel. I know that my doses will need to go up when school starts again. I also know that I will definitely continue to take medication holidays. Now, if I can just find a way to stop having my mom do work!

Merry Madness

2008-12-25T23:45:00.003-06:00

I ended the medication holiday this morning. I didn't get out of bed until 9 AM, but part of that was waiting for my daughter to get up. How cool is it that my daughter was the last one to wake up on Christmas morning? I have a super cool kid. We had to wait to go out to the kitchen and living room because our daughter wanted to see our reactions. Apparently, she decorated from midnight until 2 AM. It was impressive! She made a wonderful banner and set out ALL of her stuffed animals. So, I took my first dose of amphetamine at 9 AM.

The most amazing thing, though, is that I only took 10 mg. I did take a second dose at 3 PM, but once again it was only 10 mg. I know that I would have needed more if I had been teaching today, but I love that the medication holiday worked well enough that I could take a third of my typical dose and feel highly functional all day. We had a glorious time opening gifts this morning. We then got going on work. My wife did nap, but I managed to keep going throughout the afternoon. I washed dishes, cleaned the bathroom, put a number of things away, and even organized a huge pile of stuff that has been sitting around for months. The work was spread out over hours, and I made sure that I did not overdo anything. Still, I am stunned by my level of productivity.

The best part of the day came this evening. My folks are in town and arrived around 9 PM. I was still finishing up some of my sorting, but it was awesome to talk to them. My sister and brother-in-law also decided to hang out for a while. We will all be together again tomorrow for a second Christmas (yippee). More than anything, though, it was super cool to connect with my parents in a relaxed way. I also got the chance to show my dad number of things on the computer - TED talks, iTunes U, Radio Heartland, and the final broadcast material from MPR's Morning Show. He was stunned, and I was thrilled that I provided him some meaningful items that he will truly enjoy.

I need to get to sleep, but it was a great day. I was already pleased with my medication holiday, but the realities of today clearly proved that I made a brilliant decision in taking the time off from my amphetamine. Clearly, the break from my stimulant has helped my body in a number of ways. Best of all, I know that a third of my normal dose gave me plenty of energy. It is incredible to learn that a brief respite from my regular routine can have such a drastic impact on functionality.

December Drifting

2008-12-24T22:04:00.003-06:00

First and foremost, I must say that day five is definitely better than day four. I still don't know if it is the natural course of my med holiday, or the acupuncture, but I definitely had more energy today. The morning was still awful (I finally got out of bed at 9:30 AM because I HAD to leave the house at 10 AM), but once I got going, I felt okay. I was definitely still sleepy, and I kept my exertion to a minimum, but I did not dose as I had done during the first four days. I even managed to be decently helpful to my wife - which is good since I set her off while we were shopping (not so cool on Christmas Eve).

Beyond the med holiday, though, today is Christmas Eve. I often work to keep religion out of my blog, partly because I see narcolepsy as something that transcends religious affiliation, but also because I know that people of many faiths read this blog. While I know that my Roman Catholic faith is deeply a part of who I am, I would never want to proselytize here and offend someone of a different religious background, or someone who holds a more agnostic, or atheistic, or scientific view of the universe. Having said all of that, though, I must say Merry Christmas to those who are Christian (and Happy Hanukkah to those who are Jewish - though I know that it is a minor holiday I do think the efforts and actions of the Maccabees are way cool - and joyous Kwanzaa to those who celebrate and Happy New Year to those on a western calendar and remember that the whole month is Universal Human Rights Month, as well as World AIDS month).

I had a powerful experience at Mass tonight. First of all, my daughter sang in the youth choir. Not only was it amazing to watch her perform, but it was also wild to have other people see her who had not for some time. She is definitely a young woman in her appearance and her demeanor. It is both amazing and frightening. Beyond that, though, our priest gave his homily about Apollo 13 and "drifting in to nothingness" in space. His primary point was that the entire universe is the creation of Divine force. Whether it is God, or some other spiritual force, the reality is that the energy behind the universe is the same here and billions of light years away. All life and energy in the universe is good and blessed because it was all part of the plan. Earth is not the epicenter of it all. Rather, we are one small piece of the puzzle. It gave me a who new perspective on these past few days. As much as I felt like I was drifting along doing "nothing" in my stupor, the reality is that everything I do is part of something far greater than myself. I can no more drift away than I can disappear or levitate because God loves me always. It is a powerful message to consider.

I hope no one was offended by my theological turn here. While I hold strongly to my own faith, I truly believe that "truth" is in the midst of all beliefs and faiths. How could I, or any human, ever hope to know the mind of something or someone divine? All I know is that I am blessed to have such a good life, a job I enjoy, and a fantastic family. I hope that everyone else in this world has a chance to experience the joy that has been given to me. Narcolepsy is rotten, but I would not trade my life for anything, because the whole package is mine - the good and the bad. Peace be unto all of you!

Faithful Fatigue

2008-12-23T22:48:00.002-06:00

When I got out of bed this morning (I hesitate to call the experience "waking up"), I was convinced that day four would be far worse than day three. The extreme effort of feeding three cats left me exhausted for the next hour. I eventually stumbled to the living room and promptly slept for the next hour and a half. Finally, I forced myself to shower around 10 AM. My wife and daughter had dental appointments at 11 AM. I didn't fall asleep in the lounge and did hang in through the other errands. Lunch was good too.

Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.

That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.

It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.

Missing My Meds?

2008-12-22T17:58:00.002-06:00

I am on day three of my med holiday. I actually posted it as my Facebook status and a number of PWNs commented. One of the best responses was, "why can't med holidays be as fun as they sound?" On one level I completely agree, but another friend posted that lazy days watching movies aren't all that bad. I certainly see that point too. Since this is my second attempt at a med holiday, I am still learning what they are like. I know that it is the right thing to do for my body, but I also know that day three was definitely tougher than day two. My first attempt in August was only two days long, and I knew that I would have some functionality during the first day, but that the second would be difficult. Sadly, I actually thought that day three might be better. I was wrong.

I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.

The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.

Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.

Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.

I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.

December Delight

2008-12-21T12:56:00.003-06:00

Somehow, I have managed to not post for 16 days! That is crazy. I definitely felt it in some ways, but in others, I was at peace just getting through the daily grind. I have enjoyed the last few weeks for a number of reasons, but first and foremost, I honestly feel like I balanced things well.

For years now, I have been trying to achieve some middle ground between overcommitment at work and the demands of being a husband and parent. Narcolepsy has obviously compounded the issue greatly, but in the past three weeks, I not only felt that I balanced things well, but also I felt good about what I was doing. That latter item is huge for me. Previously, when I have done a decent job of contributing at work and at home, I have never been able to recognize it in my gut. While logically I knew I had done the right thing, my emotions and psyche were often a wreck, focusing only on what I had left undone.

This time, the complete opposite is true. I know that I did not get to everything I might have liked, and I have plenty of work to do over my holiday break. But, I feel nothing but pride for the things that I did at home and at school during this time. Heightening that sense of fulfillment is the reality that physically I have been a mess in December - bad sinuses, extreme fatigue, rotten bowels. All of those are things that individually have derailed me for entire months. Somehow, I accepted all three, and did good work, and stayed on an even keel, and allowed myself to recognize all of that. I think that is a good sign.

Narcolepsy is insidious in its relentless presence, but I am finding more and more that by knowing my base line with it, I can negotiate ways to be effective in my job and in my home. I won't ever get to everything that my brain says I am supposed to do, but I also know that my brain is completely irrational when it comes to things like that. Even without narcolepsy, no one would be able to do what my brain (or my super ego as my colleague would say) thinks is achievable. Recognizing and internalizing that reality is a huge step for me.

I have much to learn about myself still, but this December has brought me tremendous insight. Beyond all of these successes is the fact that I managed to do small batches of work during many nights this past month. I need to make such practices more habitual, but it is a grand start. I am finally on break now, and while I want to rest and unwind, I also want to continue building my abilities to fragment my work into small pieces. Yet, I am affording myself the opportunity to do that later in the break. Right now, I am placing my health above everything.

I have known since October that I need to take a medication holiday from my amphetamine. That ways impossible until now; my wife and I could not afford to have me out of commission. Fortunately, I can take a break now. Yesterday was not bad, but today is definitely a struggle. Certainly, one element of this is withdrawal. It is also the narcolepsy. Nonetheless, I am doing a decent job of fighting the urge to berate myself for being inefficient for these five days. Again, who could be productive when your body is in the throes of withdrawal. The fact that I am both staying upbeat and getting one or two things done is miraculous. Hopefully, this break is good for my body and will help the amphetamine be a bit more effective when I restart it.

Conscience Comments

2008-12-05T22:02:00.003-06:00

Somehow, another week has passed. I never understand how time can fly so quickly. The good thing is that I have been "healthier," although I was unable to fulfill the exercise goal. I do not feel guilty however. I will simply make exercising three times by next Friday a primary goal for this next week. I do know (quite clearly) that I did the absolute best that I could over this past week.

Beyond eating better, I definitely got tangible things done within our home. I changed a number of light bulbs, organized a number of music files, cleaned areas of the house, and did my normal chores. Even better, while I likely will never feel like I have done enough for school, I not only got things ready for the start of our new trimester, I even managed to correct the first quiz I gave within 24 hours of receiving the answers. I also know that my entire team felt "in synch" as we started our new material. That alone is enough to brighten my mood. One of the greatest accomplishments, though, is my own recognition of my need to stay on task when I am teaching in our classroom. I actually steered students back to the topic at hand throughout the week, fighting the urge to be tangential. Words truly can't describe how impressive that is for me.

Our current unit is an introduction to the concepts of conscience, leadership, and authority. We will actually study those theme throughout the trimester, but this first week has been incredible. We read the Orson Scott Card novel, Ender's Game, which I adore. Most of my students truly seem to enjoy it, thus far. It is perfect for our themes. Even better than the book, though, has been the chance to see these amazing, young women and men wrestling with the ethical and moral issues that we have placed before them during the past week. While we are all still human, greatly influenced by the culture of excess in the United States, I have appreciated seeing some of our teenagers make deeper and powerful connections about how they are both moved by their consciences to powerful acts and forced to betray those same values when certain social realities come into play.

Beyond the successes at school, I feel good about what has been happening in our home. My in laws left on Tuesday. It was wonderful to have them here. I definitely feel like I got the chance to grieve more over my brother-in-law. At the same time, with my wife's parents returning home, we have been able to re-establish some levels of normalcy for the first time in weeks. We have no gifts. Life is not in crisis. There is no dumpster in our driveway. I think we will make a few more strides this weekend when it comes to organizing the base elements of our lives - bills, financial records, storage of unneeded items. It thrills me that we could eventually find a minimalist way to exist.

At the same time, my brain continues to be overwhlemed by the multitude of things that I have left undone. Yet, my greatest source of pride this week is that I have not allowed that negativity to overwhlem me. Certainly, I have dark moments each day, but I acknowledge them and feel them, then I let them pass. No one could do the things that I "think" I am supposed to accomplish on any given day. Thus, as a forty-year-old with narcolepsy, I must forgive myself for not doing the impossible. I still feel overly run down and sick. My sinuses are definitely misbehaving. My anxiety and ill-health have not been the dominant element of my week, which is incredible. It is moments like this that I know I am "improving." A week like this, even eight months ago, would have sent me spirally. Radically, my primary feeling tonight is honestly elation. I am proud of the way I weathered the week. I am even more excited that I could feel this satisfied in a week when I was far from "on." I have no delusions that I will ever be "well," but I do know that I am capable of having weeks that are far more healthy than the one that has just passed. This journey of narcolepsy continues to amaze me. New discovers seem to lurk around each corner. While there are plenty that I have found less than pleasant, this new one was a welcome relief.

Health Habits

2008-11-28T20:17:00.002-06:00

It is frighteningly obvious to me that I need to modify what I am doing in my life, particularly when it comes to eating and exercising. When my stimulants were stripping weight out of me, I began eating huge bowls of ice cream simply to prevent weight loss. Of course, when I started taking heart meds (because my stimulants sent my BP sky high), my metabolism also seemed to slow. I don't eat as much ice cream now, but I still eat some. I definitely need to stop doing that. My weight has steadily risen throughout the summer and fall. I can't afford to get any heavier.

I also need to get back into a much better groove when it comes to my diet. I am not eating a lot of gluten, but I have some at least three or four days a week. Beyond knowing that the gluten makes my digestion worse, I am also sure that it exacerbates my sinus issues. I need to buy healthier food and stop using junk food for comfort. I am hoping that by naming this, I will own my commitment to myself.

Beyond the food issues, I need to begin working out. While exercise will certainly help with my weight, even more importantly I will begin gain back some physcial strength. My knees have begun to hurt again. I am also sure that some of my fatigue is a result of my lack of any kind of endurance. My regiment will need to start slowly. I clearly do not want to overexert myself. I remember all too well how sick I got this summer when I pushed to hard. Still, by building muscular strength, I am certain I will gain mental and emotional fortitude. As always, my concern remains time. I hate that each day seems to only provide me limited windows of energy. Yet, that is the reality. Getting healthy is the best thing for me, thus is must become my highest priority. It does not mean that I won't do other things, but it does mean that I have to stop waiting for some free time. There is no free time! If I intend to get in shape, I must give up other things, or simply know that I will not put much energy into my other activities.

My goal is to work out three times between now and next Friday. I also will minimize sweets and go the entire week without eating gluten. I think the goals are realistic, but we will see what my reporting brings next Friday.

Grace and Gratitude

2008-11-27T23:58:00.004-06:00

While I love turkey (although the tryptophan only makes my narcolepsy more fun) and my sister makes incredible desserts, I have realized over the last few years that the best thing about Thanksgiving is the opportunity to step back and honestly ponder the many gifts in my life. While narcolepsy (and chronic sinusitis and anxiety and irritable bowel syndrome) makes every day difficult, the reality is that I am daily deluged with gifts.

The greatest gift (other than life itself) is my beautiful wife. She makes each day sing. Whether we are snuggled tightly in our bed, or crossly vying with each other over the best way to do something, she makes each moment better. Her smile ignites my heart, and her body and intellect does the same in other places. Best of all, she truly is my dearest friend. I trust no one, perhaps not even myself, to the level that I do with her. She is cute and sexy and weird and hilarious and endearing and brilliant and annoying and driven and relaxed and glorious - usually at the same moment. While we clash on a daily basis, I am overjoyed that I continue to grow in my abilities to hear her side, disagree appropriately, eventually find resolution with her, and love her passionately throughout the ordeal. Better still, though, are the moments when we look at each other and know that everything is right. Those instances are fleeting, but their magic can last for days.

A close second is my daughter. As she enters her teenage years, I worry a great deal about who she might become, but I also know that I can't control that. What I do know is that if she becomes even a fraction of the person she is today, I will be related to one of the most amazing people in the world. Daily, my daughter stuns me with the enthusiasm and brilliance and creativity and energy and compassion and sense of justice. While I often struggle to appreciate the whirlwind of her, I know that my love continues to grow by leaps and bounds. She is a remarkable young woman. She will become who she is meant to be; I am simply glad to have a chance to tag along for the ride.

Reflecting on those two gifts alone would be enough to know that my life is good, but my bounty seems to overflow. I almost want to feel guilty because there is so much that is good in my life. Fortunately, I am learning to accept what is freely given and to do so without regret. Whether it is the incredible friendship and love of my sister and her husband (particularly when she cooks up another amazing Thanksgiving feast), or the kindest and offbeat humor of my mother-in-law and father-in-law (who are kind enough to still come to visit, even in the midst of their grieving), I shower in love on a daily basis.

I am filled with awe and wonder by all of the following and more - my friend and colleagues and students at school, the stunningly wonderful folks of MOONS, the magnanimous moderators and members and organizers of Narcolepsy Network and its forums, the devoted and earnest members of my men's group, the talented geniuses that I "teach" at MITY, the global and astute contributors to the narcolepsy support groups on Facebook and MySpace, my compassionate and fiery friends on tba and in the ultimate community as a whole, the gifted educators and friends and parents who interact with my daughter every day, my blessed medical providers - those of traditional Western medicine and those of the more Eastern mindsets.

No doubt, my life is difficult. This chronic condition makes each day a struggle, but I am fortunate. Not only do I have all of these wonderful people in my world, but I am also able to find fulfillment doing what I love. People pay me to talk to teenagers. I am even able to do it part-time. I would never wish my life on another, but I also would never trade it. I can see God's grace in everything around me.

Before I end this, I need to recognize a few other gifts that are vitally important to me. Clearly, my parents and extended family are integral to who I have become and continue to become. I have often railed against my parents, but I know I am fortunate because their love for me has given me a deeper inner strength that has allowed me to start walking this path to more balance. Also, I must own that God has given all of this to me. I would be nothing without God's love. I generally try to avoid injecting my faith into these posts because I don't want to preach, but my faith is a tremendous source of comfort for me. In the same vein, I must acknowledge that random chance has hand in letting me get this far. While being born into the United States is not a guarantee of success, it certainly helps many people. And, when one is lucky enough to be male and white and heterosexual, the odds shift even more clearly into your favor. Yes, my own energy has gone into everything that I have done in this world, but I live in a system that has been pre-weighted to favor my sex and my skin color and my sexual preference. I don't see those gifts in the same way that I see so many of the others listed here, but I know that I needed to name them. Invariably, I must offer thanks for the gift of those who read this blog. So often, I tell my students, "don't mention the paper in the paper," but this situation is different. I have never been able to journal before, but I have continued to use this blog for MONTHS - regularly (well, a hiatus has happened here and there when life has overwhelmed me). That too is a gift. The difference is that I know others are reading this too. While this writing is for me, I also feel that I owe all of you. Some of you are kind enough to check out a post or two; others read it regularly. A few of you are even crazy enough to leave comments. Regardless of who you are and how often you are here, no words can express my gratitude for your time and attention. It has definitely helped to save my life. Thank you for being a part of my many blessings. And, last (and maybe also least), I must offer thanks for my narcolepsy. While it is ridiculous and rotten, this condition has allowed me to learn more about who I am and what I truly value than anything else in my life.