Harsh Headache

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.

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

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.

Wiped & washed out

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.

Museum Musings

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.

Jumping into June

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.

Searching for Sleep

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.

Nasal Nightmare

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!

Sick Sad Sunday

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!

December Delight

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.

Beyond Blessings

For the first time in nearly two weeks, I do NOT have to go anywhere this evening. I find that amazing and wonderful. It also makes me wonder how I have survived these past two weeks. Yesterday, I literally "worked" from 7:30 AM until 11:30 PM. Somehow, I had assumed that sixteen hour days were a thing of the past. The strangest part came around 9:30 PM. I arrived home from my advisory meeting for my daughter's school and knew that I still had hours of work to do. Rather than collapse, though, I sat down and did more correcting. It has been years since I have found the strength to do that.

Now, I have no interest in making sixteen (or fourteen, or even ten) hour days the norm in my life. I lived that nightmare far too long. At the same time, I find it fascinating that I have not succumbed to a horrid virus because I have been working at an insane pace for the past two weeks. Clearly, God is watching out for me. I also know that I am getting better a pacing myself within the framework of my day. While I "worked" sixteen hours on Wednesday, I also found spaces within the day to relax and heal. That said, I firmly believe that deeper concepts are also involved.

I have thought for many years that God is present in daily life. We simply need to be open to God's love. For whatever reason, I am more open these days. Some of it is my own journey. Each day, I come closer to recognizing that I am nothing more than a traveler walking the long road of life. The things I don't know greatly outpace those few items that I do comprehend. As a result, I seek for wisdom and guidance far more fervently than I did in my youth. Beyond my own willingness to receive God's strength and aid, though, I certainly benefit from the magic happening in my classroom at school.

My teaching colleagues and our students are incredible. Both instructors are gifted educators who strive to make each moment better than the last. They also drive themselves to place our students first, each second of every day. It is stunning to be a part of the dance. Even cooler though, is the synergy that is beginning to percolate amid our young charges. Though the year is barely four weeks old, I can already see some brains coming to life with insights that greatly belie the young ages of the bodies that hold them. All of it makes me want to dig deeper and push harder. I continue to listen to my own body and soul, honoring its limits, but I also revel in the joy that teaching is bringing me again.

I am not foolish to think that every day will be paradise, nor am I crazy enough to think that plenty of horrible days will not take place. Still, I love that after years of wandering in the desert, I have stumbled into an oasis that not only reminds me of what I have always loved about this insane profession, but also inspires me to give what I can to make the world a better place. Coehlo in The Alchemist tells us that the universe conspires to aid someone in pursuit of his Personal Legend. The way things are going of late, I am fairly sure that he knows exactly what he is saying!

Place of Peace

I am struck lately by the calm that I am often able to find. Even on the most frenetic days at school, I am now able to close my eyes, breathe deeply and relax. It doesn't always work, but since it used to NEVER work, I definitely think this is progress. I know that with regular yoga in my life, I will not only get better at relaxing, but I will also become quite adept at purposefully loosening specific muscles. Wow, do I need that!

The other thing that I love is that I am able to carry some of that stillness in my heart and soul these days. Certainly, I am a basket case much of the day (as I have always been), but even in that frenzy, part of me knows that things will work out in the end. Just today, my carefully crafted lesson on Gilgamesh did not go the way that I wanted it to go. In our first class, the students asked tons of questions which forced me to continue the lecture into the second period. I love that they were interested, but as a result of that, they wound up with more homework than I had hoped. It got even crazier in the second class. I was more efficient in my lecturing, and the class essentially had the entire second class period to work. But, the computers decided that they had done enough for one day. So, hardly anyone could get to the appropriate website. In both situations, while I was frustrated, I simply rolled with the realities. I tried to help my first group as much as I could, floating from group to group and checking their progress. With the second class, I actually had them put their computers away. Instead, I read them the sections of the story. We even answered the questions together. They too wound up with more homework than I had planned, but I think that is okay.

Just months ago, I honestly believe a day like today would have done me in. Instead, I managed to run some errands, get my daughter to volleyball and even write a few blogs! Hooray! Something is happening for me, and that is good. I am well aware that my narcolepsy is not going away. In fact, all of this has happened even though I am fairly exhausted these days. That said, though, I know that I am starting to understand the real base line for myself. I am also feeling motivated to make a difference with what I do. The driving force for that impulse is me, which is even more important. So often in the past, I have tried to be a better teacher, or dad, or husband, or person for other people. I know this time, I am doing it for me.

Sailing through September

How in the world is it September 16th? Seriously! This month has BLOWN past me. I had hoped to write at least one blog entry last week. Then, as the weekend approached, I was sure that I would get caught up then. Suddenly, it is Tuesday night, and I have not written anything for nearly a week and a half. No wonder my head feels like it might explode. Unwritten blog pieces are screaming to get out. The scariest part is that I couldn't have written last week even if someone would have offered to pay me for it. I can't believe how busy I have been.

Somehow, little old narcoleptic me has managed to put in full days for over a week now. Starting on Monday, September 8th, I worked (or managed) 12 hour days (or more) for this entire period. Two of the days have been school work and then getting my daughter home and to volleyball practice. Two other days were school and going to my daughter's school for the distribution of computers for the new one-to-one program (yes, I am ridiculously excited about it). Another day involved a full day of teaching and helping at a football game. Even Saturday and Sunday were crazy with neighborhood clean up activities, curriculum planning, house and garage cleaning, church and my men's group. But, the two nuttiest days were last Tuesday, September 9th, and yesterday.

September 9th was already shaping up to be a crazy day. I had a full day of teaching, an acupuncture appointment, a chiropractic appointment and the first of three computer distribution days. The heightened stress came in when I realized that my car had died in the parking lot of Langford Chiropractic. My wife eventually arrived, and we jumped my car. I also knew that I would not be at the computer distribution. I figured my night would then get easier, but I was wrong. On the trip home, my radio and speedometer would die every time I turned on my headlights. Even more unnerving was the radio fading out periodically and then fading back in. Thus, I didn't even turn off the car when we got home. We simply headed straight to our mechanic. After dropping off the car, I desperately wanted to go get some food, but my wife needed to get home to our daughter. Thus, I felt rejected and let the wheels start to come off my wagon for the night. Somehow, I managed to avoid a huge fight with my wife - which was a good decision. We even had a chance to process the situation the next morning. She actually thought everything was "fine" from the night before. The best part, though, is that I did get to tell her what was upsetting me, but in a way and at a time that put neither of us in a bad place. As crazy as that day felt, though, it had nothing on yesterday.

My wife and I have decided that I am driving our daughter to school on Monday's. My wife teaches an early class, and I like helping in the morning once a week to offset the times when my wife needs to pick up our daughter. Because of this early trip on Mondays, I get to school before it starts. Ordinarily, that is great because I can get some work done (since I am always behind). Unfortunately, I was horribly behind yesterday (and still am). Yet, when I got to school, I knew I had almost nothing to give in terms of correcting. I did manage to get some other work done, though. I was active all day. My wife picked up our daughter to get her to a volleyball match, and I stayed at school to get my lesson planning finished for today. I worked constantly for three hours. When I finished, it ws time for "Back-to-School" night. That meant that I got to put on the teacher show for the parents of my students. Granted, we had an excellent time, but when I arrived home at 9:15 PM, I had been working for 14 hours. That is not the wisest thing that a narcoleptic can do.

The strange thing, though, is that I am surviving. I know that I can't keep this pace up, but I don't think that I will need to do that. The past two weeks have had a number of one time only activities. I still believe that I can get into a decent routine. More importantly, I know that I HAVE to get into a routine if I want to be a decent teacher, a great dad and an awesome husband. Having said that, though, I am proud of myself for working hard and for protecting time for me - even on the busiest days of the past week and a half. I am still horribly sleepy, but I am weathering it well.

Therapy Thoughts

I had a great session of therapy this morning. One of the best moments came when I realized how often I allow the external to dictate my mood. I have known that for years, but the stunning realization was that I rarely, if ever, actively seek to make situations work for me. When things begin to go wrong, I simply push ahead and cope. Rather than stepping back and factoring my own well-being into the equation, I prioritize everything else ahead of myself. In fact, I doubt I even consider what the impact of the situation might eventually be on me.

The "aha" came as my therapist and I were discussing my meltdown in the car a week ago Saturday (my lovely moment in Maple Grove - aka Hell). At any point, I could have stopped my car, gotten out, and let off steam by walking around. I didn't though. I just kept pushing forward, sinking lower and lower into my frustration. In hindsight, it seems so obvious to take care of myself, but I lose sight of me in those moments (actually, I do that in most moments).

Even more fascinating is that I was already in a desperate place when I left the house on that Saturday. I had had a rotten morning and was late. While I tried to remain calm in the car, I was horribly on edge. Arriving at the meeting to find no one there, certainly added to negative spiral. In all of that, though, I never once thought about doing something for me - other than my ineffective (at that moment) self-talk. What I need to do is find a set of options that I can use when everything starts to crumble, particularly at the outset - rather than during the nervous breakdown in the parking lot of some putrid strip mall, during Sidewalk Spending Spree Special!

I also know that much of my angst and anxiety in those moments comes from trying to control the uncontrollable. The Serenity Prayer definitely needs to become a primary resource in my toolbox. But, the reality is that using a guided mediation or doing yoga for 10-15 minutes or even reading something like Thich Nhat Hanh will help me let go in amazingly tangible ways. I also can make phone calls, but I definitely think that active engagement internally is something that I need to explore. My therapist offered the thought that I might rely on my extroverted nature too much to "help" my mood. I think she is right. Using meditative techniques to provide internal ballast will give me greater strength when things continue to go wrong externally. My Maple Grove moment even provides an example of that. After I finally escaped from the parking lot, I called my wife - the greatest source of support in my life. Hearing her voice bought me tremendous peace...until I realized that the gas option I thought I could use would not work. That might have been the most dangerous moment for me. Things seemed to be getting better, but another disappointment drained every ounce of hope from me.

I know that many dark days remain ahead, but I am intruiged and excited about this new insight. I already wanted to start doing yoga again - I know I need it. Now, though, I have even more incentive (always a good thing with me). I need to restart yoga and regularize my day to practice balance with mediations and breathing exercises. The goal is to find a schedule structure for the day - one that lets me stay on an even keel while helping in the house AND taking care of myself. I believe more than ever that I can get there.

Missing Mother Nature

My wife, daughter and I are in northwestern Minnesota, staying with some wonderful friends. Today's plan was to head to Itasca State Park and do some biking. We could not have picked a better day! The sun was beautiful, the temperature stayed in a wonderful range, and the whole group had a fantastic time. Our friends have two boys, one a year older than our daughter and one a year younger. They all get along well, and today all of them held their own biking for close to six miles. Add to that the decent hills we all had to climb at times, and I admit that they impressed me. We made a great stop for lunch at Douglas Lodge, a beautiful historical site in the park. I HIGHLY recommend the Wild Rice Salad - it was delicious. We then biked the nearly six miles back, let the kids swim and even watch the children (and my wife) build a wonderful sand castle.

The entire day has served as a reminder to me that I need to get outside more. So often, I cut myself off from everything as a result of the narcolepsy. Fearing that I will push too hard or that I will wear myself out quickly, I avoid doing "extra" things. I LOVE hiking and biking through beautiful parks, yet I rarely do that any more. Certainly, some of that is the result of making other choices, which I often enjoy, but I do turn down plenty of chances simply because I am afraid. I definitely know that I don't like explaining how the narcolepsy tires me. I also dislike the feeling that I am a burden to others because I get so wiped out. Rather than risk those things, I often look for ways to back out (or simply decline the invitation in the first place).

In fact, I almost did it today. Some small part of me wanted to just stay at our friends' home while everyone else went biking. Fortunately, that voice was tiny. What was not minuscule was the voice screaming at me when something went wrong with my bike upon our arrival at the park. The stem of my rear tire ripped out. Worse, it was likely my fault. My wife was trying to inflate the tire and I am positive I told her the wrong way to do it. Nonetheless, my entire rear tire was flat and beyond repair. My immediate reaction was to bail on the ride. I honestly told everyone to go. Our friends then let us know that there was a bike rental and repair place at the next stop on the park drive. I did convince everyone to get started and told them that I would deal with the tire and go from there.

Yes, part of me still wanted to scrap the whole thing, but I mustered my courage and drove to the bike place. It was even closer than they thought. I still felt horribly sheepish, because I needed help (yes, I know that is foolish, but I am who I am). As I turned to look for a parking spot, I noticed that everyone else was waiting at the bike shop. I was furious, mostly because I was already dealing with it, but also because I still didn't want to be a burden. I eventually found parking and figured they had headed out. As I carried my bike toward the shop, I saw my daughter and wife and nearly melted down. I figured they had decided to wait for me and sent our friends ahead. The pressure of the entire situation came close to consuming me.

My interaction with my wife was more than tense and all due to me. It turns out the husband, when he realized that the bike shop was so close, figured he could get back to fix the tire before I left the other lot. I tried to apologize to my wife, but we both needed time (I did approach her a few more times throughout the day and all is well). The husband soon returned from his jaunt to the other lot. While my ego and energy were in tatters, I did accept the help. He fixed it in a matter of minutes. Then, we all set off for our excellent day.

While I certainly wish that none of the problems had happened, I am also grateful that they did. I need to learn how to accept help. I need to let others do things for me. Beyond that, I must recognize that sending everyone else ahead without me is not being brave and thoughtful. It is being selfish and cowardly. My family and our friends would have been worried about me and certainly would have missed me the entire time. By letting our friend help me, I allowed this excellent day to happen. If I had been wise enough to do it immediately, my wife and I would not have need me to apologize repeatedly. I do hope that old dogs can learn new tricks because I honestly want to do that. The best thing in all of this is that I not only opened myself to help, I remained open to enjoying the day. Certainly, I am tired and the narcolepsy crept in a times during the ride and the lunch, but I would have deeply regreted missing this day.

Helping Hands

Today, July 1, felt like my first day of summer. Not only was the mercury climbing into that uncomfortable range of high 80s (I may be Minnesotan, but uncomfortable heat can't be anything less than 88 degree - unlike many Minnesotans who balk at 80), but also I actually had a fairly relaxed day. Granted, I still had WAY too much on my internal check list (of which only a couple of items got ticked), but I did things for me today. I did that and still spent time with my daughter, provided support for my wife and even had lunch with a dear friend. Days like this make me remember that the concept of "balance" is not just a concept. It actually happens some days - I can NEVER count on it taking place, but everybody has good luck some time.

The aspect of today that grounded it so well was more time at Langford Chiropractic. I know that I rave about them often, but the entire staff is a huge piece of my coping. I continue to utilize the tremendous skills of my acupuncturist. In fact I saw her on Monday - that would be the 15 minute late appointment. She not only managed to get me in, but she also got me out on time. I'm late, but still got the full treatment and left with my day back on track. The best thing is that my acupuncturist managed to hit perfect spots for my high stress and low energy.

Today, I received equally impressive treatment from my massage therapist and my chiropractor. As I have written before, my muscles live in a constant state of tension. They have always been this way, but I know that my stimulants have made them much worse. Because of that I have an ocean of sympathy for my massage therapist. Incredibly, she is usually able to get most of my muscles to release. More impressively, she does that without "hurting" me. Do I experience pain? Of course, but even when she is working on the worst muscles, I know that the pressure she applies will allow the muscle to heal. Her strength is phenomenal. I was particularly worried today, though, because I wondered if we would ever move past my face. The two weeks of MITY took such a toll on me that even my jaw muscles were still clenched. Eventually, the massage progressed to my shoulders. Again, I wondered if my neck and shoulders would consume the rest of my hour. Fortunately, she did what she could (and it was fantastic improvement) and then worked on my back. She had actually joked that she would spend time "chiseling at it." Sadly, that is usually the case. I am blessed that she can do so much to remove tons of toxins from my muscles. I certainly left the room in a vastly improved state.

My chiropractor also managed to make exponential improves in my physical state. She is one of the clinic's owners and has amazing insights into how to improve someone's health. We often joke about the state of my back, especially because she knows that my massage therapist is unbelievable strong. Even my chiropractor was stunned today by how tight everything remained. Still, she worked out quite a few subluxations, even one in my neck that I didn't think she would get. Perhaps the best thing, though, is that I know she cares about my health, particularly in ways that only a handful of physicians have shown me. I realize that managed care limits what MDs can do, but I usually spend less time with my chiropractor than I do with them. Again, I often leave Langford Chiropractic grateful to have such excellent care providers.

Even the office staff brightens my day on a consistent basis. Since I am there every other week, most of the desk and financial staff know me. I am always greeted with a smile and am often asked about my daughter and my day. The entire clinic honestly feels like home. I know all of that is important to me because it is hard for me to ask for help. Without that comfort, I might not be getting acupuncture every other week and using massage and chiropractic work done every three to four weeks. Those three things likely do more for my "balance" than anything else in my life. They are the primary way that I am good to me.

Taking care of myself needs to remain a top priority. I wrote yesterday of prioritizing my life. My psyche is not good at acknowledging this, but I need to be my top priority. I am not good to even my wife and daughter if I am not emotionally and psychologically healthy. Certainly, I will continue to be as physically healthy as I can be too, but that situation is stacked against me. These non-Western approaches are fantastic tools in my maintenance of me. I must begin to reconnect with yoga (and exercise) because it bookends the acupuncture beautifully. When I was doing yoga and acupuncture together, my energy and spirit both reached wonderful heights. Until then, I will continue my trek to the Highland Park neighbor in Saint Paul to visit my favorite medical clinic!

Schedule Struggles

I wonder if my amazement for the ins and outs of narcolepsy will always remain this high. Regularly, I lose track of time. I have written about it before - a few times. So, how can I be stunned when it is suddenly 3 PM and I am late for acupuncture. I entered our home office at Noon. I was putting financial information into the computer. I plodded along and even chatted occasionally with my daughter when she entered. Then, while getting something off the printer, I noticed that the computer had the time at 2:56. Honestly, my reaction was disbelief.

I made it to acupuncture and got treated and even got out close to the time I would have if I had been on time - much of that has to do with the wonders of my acupuncturist and the high quality of service at Langford Chiropractic. I even manage to stop berating myself in the car since I clearly am not in control when it comes to the passing of time. But, I am unnerved that the loss of those three hours shocked me. It shouldn't, but it did. Just one more piece of the coping puzzle. I wouldn't be me if I didn't have such unrealistic expectations, and while I might not like that such delusions stick around, I need to embrace them, just as I do my narcolepsy - yippee!

The other element that made the car ride tough was the flood of other items that had also been on the "to do" list today. Again, I handled it better than I have, realizing that the three hours did get much needed things done, but the other issues still ate at me because they are important too. One clear message in all of the chaos, though, is the need for me (with help) to create a rough schedule for my day. It was a goal at the start of the summer and remains one, MITY makes life hard, and today was honestly the first low key day I have had since school let out. Still, I know myself well enough that I will let the entire summer drift away unless I ask for help in making this framework idea a priority.

I need time for the following: yoga, exercise, family, work, housework, my wife, and relaxation. Even as I type it, I get tense because I am already trying to count the minutes and hours in my head. Invariably, my conclusion is that I don't have enough room for all of it. But, I need to find the way to balance those things in the time that I do have. Clearly, I need to prioritize the list too - which things should be daily, which can alternate, which are truly flexible, which must be rigid habits. Off the top of my head, the dailies are my wife, family, yoga, and work. Even within that, only my wife and daughter are non-negotiable. Interestingly enough, they tend to be the two on the list that DO get cut short right now.

As for everything else, I struggle with the ideas of how much, too much and when. That is another reason that I need outside input. Getting others to help me construct the structure is important, but equally vital is having outsiders who will assist me in adhering to the schedule. I also must acknowledge that one of my most compulsive tendencies is an over awareness of time. When I write in this blog, "that the computer had the time at 2:56," it is not necessarily for dramatic or creative effect. My brain grabs on to the exact time and locks it away. It then watches the car clock every inch of the way and frets at every red light. How cool is anxiety, huh? And, my brain does that on 20 mg of fluoxetin. Yeah, it's fun! Again, it is a piece of me and I must integrate it. But, it makes creating a "loose" schedule dangerous for me. Because I can become obsessive about time, I run the risk of having this helpful tool mutate into a destructive one. That is another reason for the outside assistance. Perspective is a great thing.

Getting a schedule into practice is the second goal I am setting tonight. I have another round of MITY starting next Monday, so I will allow myself until July 21 to get all of the pieces in place, but I also need to build it a bit at a time - or I will fail. I also know that I need to spend more time writing about time. Clearly, I have something happening there that needs to be brought into the light. In the end, though, these are all just steps and none of them will be the magic fix. Each thing I do is within the breadth and width of my narcolepsy. I am certainly more than my condition, but I am subject to its whims - even if I do get my schedule groove on.

Joy and Sadness

What a week! We regularly discuss the concept of MITY time at my summer program, but it has never been more visceral than what I felt this past week. Every day at the program seems to move faster than the next. This week was a blur - a fantastically wonderful blur. Our students produced incredible writing, presented their work marvelously at the class reading and grew together as a class. Best of all, the appreciated the gifts and the shortcomings of each other. They celebrated each victory and embraced each flaw. Of course they also had a fair share of chuckles over some errors, but even then they laughed with one another, not at anyone.

Even more impressive for me, is that my co-teacher and I never did get "on track." Yet, all of our students had an amazing time. Certainly, we instructors are still good in the classroom with our "B" game, probably even with our "C." The students, however, are the real reason that this year achieved new heights. Their work and editing with one another stunned me this year. The depth and insight of their critical comments unnerved me. The young women and men understand how to peer edit in ways that I never imagined teenagers could. Some of my favorite moments came in the last three days of class. A young woman, who has been in our class for five years, essentially started functioning as a third instructor. The two of us were tied up assembling the final book and the class reading program, so she quietly stepped in to aid us. I know that some of our youngest writers exceeded my wildest expectations because of what she helped them to realize.

Thinking on that, though, also reminds me that the final day of the class is also incredibly sad. The bond that forms at MITY in general, and in the creative writing class in particular, is breathtaking. So may of our students feel alone and isolated in their own schools and in their daily lives. Being at MITY allows them to feel "normal" because every other student is just as talented. There is still tremendous diversity, but instead of competing with each other, they inspire each other. As a result the students form lifelong friendships even though they only see each other for a two week period each year. Even I know that I do my best teaching in this two week period. Thus, reaching the final day can be devastating. I was particularly worried this year. This class began bonding before we even entered the room on the first day. Some of that is the fact that 17 of our 27 students were returning to the class. The bigger piece, though, is the culture that MITY fosters.

Another reason that the "final" day has become more difficult of late is that we now are regularly having students who have been in the class for five years in a row. Last year, we had our first two students reach the five year mark. Both had already graduated from high school. We also had a third graduated senior who was in the course for the first time. This year, we had four graduated seniors - all of them have taken the class multiple times (with two again hitting the five year market). Beyond those two we had one other person hit the five year mark, and unless something radical happens, she will be our first six year student. Six is the maximum number of years that any student can attend MITY. Basically, she will have been in the class for two thirds of our nine years come next June. And, out of those 17 returners, we had many four and three year veterans. It is insane. It is also painful to reach those final moments and to know that we all can't be together any more. Now, change is good (in fact, I think it is vital), but it is also extremely hard.

The two five year, graduated seniors who had their last class today are incredibly important to me. The young woman is the one who I mentioned above helping her peers. She has always been a person who has given to others. Even in her first two years, she was the student who "organized" our piles of books. She writes glorious pieces and showers love on all of those around her. I know that she will miss MITY, but I also know that we will miss her smile and her presence even more. Thankfully, she is already a dear friend, and I know that we will stay in contact for years. The young man is someone to whom I am even closer. He arrived five years ago as a timid boy who definitely did not "fit in" at his rural school. He credits MITY with saving his life; I believe him. I have seen his town, and it has nothing to offer him. He lived for MITY every summer. Thankfully, he has grown into one of the finest people I know. He will be much closer (geographically) to me while he is in college over the next four years. I am thrilled. He calls me his "second dad," and I can think of no greater honor. I would be blessed to have had a son as wonderful as he is. He also happens to be one of the best writers that I have ever encountered.

Even though I know that I will see both of them again, it will never be in this particular "MITY" capacity. In many ways it will be better, but it certainly will not be the same. I know that much of my frustration of the past two weeks was the fact that my narcolepsy was preventing me from being the teacher that I wanted to be for them. Now, they both read this blog. They are well aware of my condition and would tell me it is insane that I would worry about that. Still, I care about them so much and hate that I couldn't be more for them this year. The situation does underscore the same problem I continue to have at home. I can accept the limits of narcolepsy when the people affected are strangers or acquaintances, but the idea of disappointed those that I love destroys me. Of course the reality is that I will impact the people closest to me more than anyone else because I am around them more. I can't put others ahead of me, even if they are people I love, or better yet, especially because they are people I love. When I think I have disappointed those closest to me, I am so harsh on myself that I wind up hurting them even more from my woundedness. Thus, I continue to accept everything that narcolepsy brings my way.

Finally Accepting My Own Advice

For years I have encourage students to write when they are upset, or anxious, or depressed, or angry. I have harped on the therapeutic values of writing and promoted the value of writing daily - both for academic improvement and mental relief. In the midst of all of that, I often felt like the biggest hypocrite ever to lead a class. While my charges often found my suggestion fulfilling, I never found a way to practice what I preached. Certainly, I attempted to journal at times. I also have a decent collection of writing with which I tinkered sporadically. But, writing on a consistent and frequent basis managed to elude me - until now.

This blog has become a vital component of my sanity. I knew that even before this past week, but my lack of output over the last seven days has been unbearable. While I realize that my bubbling animosity has a multitude of causes, a portion of it definitely grew out of my unfulfilled need to express myself. Unpacking my anxieties has become a vital piece of my routine. I am also amused that my need to be "more selfish" has finally resulted in at least one tangible (and definable) activity. I do plan to discover more elements of my life that are specifically mine, but it is incredible to realize that I need to post here simply to be at peace with myself.

Yes, I worried all week about what my "regular readers" might think if I didn't post soon, but even more powerfully, I knew that I needed to write about my week simply to stay sane. What strikes me as most humorous about this realization is my own attitude about technology. If anyone had told me three months ago that blogging would become as important in my life as finding a correct diagnosis or feeling supported by my men's group, I would have laughed in your face. While I have often actively supported the use of technology in the classroom, I have never fully understood the impact that computers can have on an individual's life. Part of my ability to "cope" with narcolepsy is directly linked to computing. I have NEVER been able to journal, now suddenly it is a core piece of me. Why? Now, I know that people are reading it. I want to help others by putting my thoughts out on the web, but the primary purpose of this writing is for me. For the first time in my life, I am selfish in a way that it vital and necessary. I needed to know that others would read it. My vanity LOVES that my words matter. Even better, some people actually leave comments. My words have touched others. Again, a portion of the thrill is helping someone, but another is that I matter.

Blogging is therapy for me. It is the very thing that I have driven home in writing classes for years, but could never accomplish for myself. Best of all, I know that I would continue to do it now, even if every one of the amazing people who visit my blog disappeared. I need this. If nothing else, like my good friend from La Mancha, it is here that I tilt with windmills. Nothing (short of a major medical miracle) will ever remove narcolepsy from my life. This Erewhon (spell it backwards if you are unfamiliar with the word or Butler's book - you do need to flip the w and the h) of the Internet provides me the place that I can be free of its grasp. I can rage against it and embrace it. I can cry and laugh and fall and rise. Quixotically, I can be the knight I have always seen in my mind's eye, doing battle with the dragon (or Darth) that vexes me to no end. I need this outlet and claim it as my own!

A wonderful post script in my crazy narcoleptic world - although this posting is also dated for Sunday, June 8, I did not finish it until June 9. I fought my Xyrem for at least a half hour, once again attempting to do too much (balance may yet find me), but eventually succumbed to sleep. I wrote the final paragraph and a half of the penultimate paragraph on Monday. That said, I love that it happened that way because I know I never would have hit on those final thoughts as my body was shutting down. Blessing and curse - narcolepsy!

Walls are NOT good for stress relief

I punched a wall. Hard. I did that after I tore down the shower rod and curtain. The stripping of the tub came hard on the heels of me destroying my toothbrush. It was not a good morning. Fortunately, I did not damage the wall. The rod and curtain were also in good shape and promptly returned to their appropriate positions. The toothbrush needed to be replaced anyway, which I took care of this evening. In fact the only physical harm came to my hand. I wisely threw the punch with my left hand, allowing me to continue writing with my right (my bizarre ambidexterity involves right handed writing and left handed athleticism). Thankfully, I broke nothing. My knuckles have some good swelling, and the pain is more than annoying. My wife suggested icing it, but I feel like suffering a bit more as a reminder of my stupidity.

Interestingly enough, I associate my foolishness not with the temper tantrum this morning, but my inability to discuss my mental and physical states honestly. I continue to try to "push" when I am well beyond my breaking point. That is simply not wise. Last week drained me completely. I dragged myself out of bed on Saturday and did get to my ultimate Frisbee practice. While I missed the run and the first drill to do my own stretching, I did participate in the rest of practice. A couple of the drills brought me close to last week's dizziness, but I felt okay after a small break. I even played decently in the scrimmage, although I was frighteningly aware that I hadn't played in a game since September. I threw away a few ridiculously horrible passes. Still, I enjoyed practice and was glad I went.

I got home and mustered the energy to do some more weeding of the lawn. Then, I mowed. I was proud of myself for all of that. By the time I sat down to eat lunch, I had done a decent amount of work. I had also spent every ounce of energy I possessed. The rest of the day consisted of my sitting on our snuggler staring at yet another crossword. Every time I got up, my head would spin for 30-60 seconds. It was such a lovely feeling. My wife, my daughter and I did watch a wonderful movie together (The Last Mimsy), but I was not at all present for them. I also knew that my wife was stressed about her own lack of energy all day. I was tense and terse as the evening progressed. I also felt my anxiety rising as I pondered all of the tasks not yet done. As we went to bed, my wife raised the possibility of 8:15 AM Mass. My stomach turned at the thought, but I didn't say anything about not wanting to go then. She said we could figure out in the morning if I would join them.

I actually slept as well as I have in a week. But as soon as I was up, I knew I had nothing. In all honesty I should have simply gone back to bed. Unfortunately, doing things like that only makes my narcolepsy hit me worse. Thus, I started on the sudoku and the crossword, ate my breakfast, and tried to relax. As my wife and daughter started to stir and then to fade back into sleep, I tried to convince myself that they wouldn't want to go to 8:15 Mass. They did, though! We finally started to get ready at 7:30, and they both showered before me. At some point I knew I wouldn't make it, but I still couldn't admit that. Finally, I snapped. Screaming at my wife, myself, my narcolepsy and the world, I destroyed a toothbrush, deflowered my shower and smashed my hand.

Beyond the idiocy of this is the lesson that I have to be honest - with others and with myself. The huge problem this morning is that I worried that telling my wife I could not go to Mass would lead to a huge fight or me doing something stupid (like punching a wall - oops). I am getting better at accepting my limits. I beat myself up less for irrational and unachievable expectations. Sadly, though, I still rip myself to shreds when I think (or know) that I am letting down my wife and daughter. My wife has had such a hard week. Her job and stress are inconceivable to me. I need to do more around our house so she can stop worrying about it. I also know we need more time together as a family. Mass was a perfect way to do that today, except that I couldn't do it. My limitations don't just steal from my job or my fun. Narcolepsy also impacts my home life - every day. I stuff those incredibly personal emotions and disappointments until they explode out of me - in ugly and painful (really painful if you are my left hand) ways. My genuine fear that a fight would ensue with my wife if I bailed on Mass is a much better route than a torturous rage that could have resulted in a hospital trip and did cause a fight anyway. I must learn to trust my heart, my wife and my honesty.

Gratefully, my hand is not even that swollen. My wife and daughter have forgiven me. I think I have even forgiven myself - mostly. Days like today serve to remind me that this journey is only beginning. I have so much to learn - about my condition, about myself, about true joy, about balance. I am lucky to have a loving family that supports me on good days and bad. They even let me go to great movies, like Prince Caspian, after throwing tantrums and missing Mass. Gotta love that!

Daze blur bye

Please forgive the intentional typos in the title. I simply feel like this week has been a whirlwind - the misspellings capture the spinning nature of my intellect. My wife's health seems to be better, but the week certainly continued in the same vein. Tuesday featured a girl scout meeting and a band concert. Then I worked three full days at school. A friend needed to be home with his wife. They induced labor on Tuesday, and the baby was born on Wednesday evening. My colleague obviously needed to be there. The problem was that his students were delivering huge presentations. Since I used to do the same project, he asked me if I could fill in. How could I not do this for him?

I think things might have gone well, if I had not missed two 1 AM doses on Xyrem - one between Tuesday and Wednesday and the other between Thursday and today. This week also featured the seniors departure, which heightened general tension. I remain behind on everything. What caused the biggest drain, though, was the series of events that lead to Wednesday being Mike Main flashback day. Not only did I have a short night of sleep, I left our house at 7 AM and did not return until 10:04 PM. I could have sworn it was 1998 again, when those days would happen on a regular basis. Amid the full load of teaching, the two meetings, and the dinner with a friend, I managed to not only stay upright, but I also remained focused and attentive.

The same could not be said for Thursday. Wednesday had definitely sapped most of my energy. I blew a gasket in my friend's first class. I had a tough time focusing all day, and I spent the evening staring at the newspaper. I still taught well and managed to be social and cordial, but I clearly struggled to do that. Today was actually better, but I also knew that I had a three day weekend ahead. I also knew that I could get relatively caught up on my correcting. I almost passed out an hour ago, but am rallying again. I know I will sleep well tonight. I just hope that I don't miss my 1 AM dose. Of course, if I do, I will be able to take it safely at 2:30 AM and still function at ultimate practice, unlike the past three days.

What surprises me most about this week is that as tired as I am, I definitely know that I did a good job. I helped a friend and supported my wife. I taught well and got some things done around the house. I definitely provided tons of love to my daughter and found ways to be present for my students. I did all of that while knowing that I was far from my best. I know that I can't work in a full-time capacity. These past three days made that painfully clear. but, I can still push myself. I dug deeply into my reserves and did well. I don't think I would have made it one more day in that way, but I have an ocean of hope for next year.

I need to set a routine and gain more physical and mental strength, but I can still be me. Narcolepsy reduces the amount of things that I can do and the length of time that I can do them. It can't change who I am, though, unless I let it. I need to be wise and careful in my decision making, but I can also take joy in being alive. I know some of my good mood is a result of a week of sunshine. I know much of it comes from the school year ending in less than two weeks. Yet I also know that I am learning to find balance. I failed in that regard this week - at least I did in many ways. I also succeeded in recognizing that lack of balance and accepted that I could only accomplish so much when pushing myself this far past my limits. I am spent, and I am happy. Perhaps that is the greatest paradox thus far - in many different ways!