Moony for MOONS

One of the problems when you are overly effusive in your praise is that you have no linguistic outlet when something grossly outpaces your frame of reference. Thus, you return to simple statements. Today has been the best day I have had in a long time. The MOONS meeting I attended today was better than I could have ever expected. While I was excited at the prospect of meeting others who "get it," I figured that the event would be good, but not life-changing. I love it when I am this wrong.

In typical fashion of late, I was...late. I once again missed my 1 AM dose of Xyrem. I took it at 2:30 AM. The irony this time is that I know I woke up to the alarm. I even took my methylphenidate ER tablet. But somehow, I passed out before getting to the Xyrem. As a result, I struggled to get up and still needed to pack for my trip to Osakis. I also made the decision to swing by ultimate practice to drop off my check for jerseys. Brilliant! I know that I will some day realize that humans without sleep disorders don't try to cram all of those things into a morning, and I will finally cut myself some slack. Sadly, it was not today.

Even with all of that chaos, I made it to the meeting by 10:15 AM. Things had not started, and I was met in the hall by a wonderful woman who turned out to be Dr. Eve Rogers, the physician who is co-organizing the group. We started and the young man who has been the driving force behind this effort outlined the ideas and basics. He also provided us with a great survey to explore what we want out of the group. Then, we moved on to our featured speaker, Elizabeth Nager - a therapist who specializes in patients with chronic illness. She only manages to get through a fourth of her prepared talk because people were so engaged with what she said and wanted to explore every idea more. I could feel the relief in the room and in myself as each of us realized that we were not crazy. In fact, we all heard, some folks for the first time, that the emotions and experiences of our lives with narcolepsy were normal and natural, specifically because narcolepsy is a chronic and invisible condition. The best thing is that she is willing to return to "finish" her talk. While I have know for years the importance of my own therapy, it was glorious to watch others make that same realization.

Although we had almost reached the end of the meeting, Dr. Rogers presented a plethora of fascinating material relating to new discoveries about sleep and an upcoming sleep conference. She also shared that the American Academy of Sleep Physicians declared in December of 2007 that modafinil (Provigil) and sodium oxybate (Xyrem). That is a vital piece of information that many narcoleptics can use to leverage their insurance company to pay for the meds that they need. I was in the presence of a physician placing patients well ahead of insurance and financial needs. Amazing!

Finally, as the meeting broke up, a few of us still hovered. A young woman and I shared our connection with Dr. Rogers and the organizer. We each chatted a bit about our own experiences and histories. We continued the dialogue in the elevator and all of the way to the parking ramp. The meeting ended just after Noon and the three of us didn't break up until 12:45. Then, the organizer and I traded more stories standing in the parking ramp until 1:25! I definitely made a new friend. I am also ecstatic to have found a genuine outlet for my desire to help myself and other narcoleptics. I can't wait until the planning meeting in July. I also think that MOONS can become a fantastic outlet for many of the narcoleptics in the Twin Cities.

As I drove away, I knew peace. I felt a deep satisfaction that I know will provide me energy and strength in my darker moments. I also know that it helped on my drive from Saint Louis Park to Alexandria. Two plus hours in the car - alone - is not always the best idea for narcoleptic, but I made the trip without a hitch. My friends the Barenaked Ladies and Mike Doughty helped me a great deal, but I also know that the energy filling me from MOONS factored in as well. I even know that I will be going to the September 6th meeting - even if it means that I need to miss the Heavyweights Tournament for tba (and it does). While I will be sad to miss out on a great ultimate tourney, I would be even more disappointed to not be a part of this incredible organization. I am even hoping to convince folks that we should offer smaller monthly gathering around the Twin Cities at which people can share their stories and simply connect. Heck, after today, I might even consider join the Narcolepsy Network and attending the national convention in October - it is in Milwaukee.

I am blessed in many ways, but the gift of today has been beyond the pale. To top it all off, I am in a hotel in Alexandria, MN hours away from watching one of my all time favorite students and friends graduate from high school. I am not sure why, but clearly God has decided to shower me with love (of course, I might have passed on the whole having narcolepsy part, but heck even that has its moments). In case you did not guess, I will likely write more (MUCH more) about MOONS. Just though I should warn you.

Giddy, Goofy and Great

I am beside myself. For months I have waited for May 31st to arrive. Suddenly, the day will dawn tomorrow! I will, at 10 AM, sit down with other narcoleptics. While Facebook and MySpace have been amazing, I can not find words to capture my sheer exuberance at having the chance to talk with others who also endure this crazy condition. I don't even have a context for this. Trading stories online is one thing, but having the chance to see the laughter and tears and frustration and joy that another narcoleptic experiences as she or he is able to share completely eclipses my frame of reference.

My enthusiasm even makes the ridiculousness of my day pale in comparison. Today, I had one of the most unnerving moments yet with my narcolepsy. I know that my short term memory has taken a decided turn for the worse of late. I also know that I have stretched myself well beyond my coping skills in the last week. Still, I figured that my last Friday of the school year would be fairly uneventful. My first two classes went well - great discussions about Hayao Miyazaki's Spirited Away. I then headed to lunch. While I did not bring food today, I figured it would be nice to relax and hang out before my meeting during the second half of the period. I needed to urinate so I headed into the bathroom. As I placed my water bottle and computer on the shelf in the restroom, I realized that I had forgotten my fanny pack upstairs. Now, walking back up would be annoying, but not difficult. The bigger issue was that I had forgotten my amphetamine yesterday and knew that I would likely do that again unless I made that walk back upstairs. As I stood at the urinal, I berated myself for not being more conscious of my meds. As I finished, I began to become aware of the weight around my waist. It then dawned on me that I never removed my fanny pack today. It was still around my waist. The more embarrassing/ridiculous aspect of the entire ordeal is that, as I was berating myself for forgetting my fanny pack, I was moving it out of the way so I could pee! In typical fashion I got even more upset with myself about that, even though I now knew that I had my medicine. Crazy!

Fortunately, I knew it would be a great story and was able to laugh about it within minutes. I also knew that it was a small blip in my day BECAUSE tomorrow I get to meet other narcoleptics. It is stunning that even the idea of a support group can fill me with such joy. Hopefully, I will be even MORE excited after the meeting tomorrow. I am well aware that a support group can't solve or change anything about my narcolepsy. But, it can provide me with a whole new set of people who understand and share my frustration and grief and anxiety and humor about this twisted and troublesome disease.

Finally, I also have a trip to see a friend to enjoy tomorrow. One of my students from my summer course will be graduating from high school. He asked me three or four years ago if I would come to his graduation. We have discuss it off and on through all of these years, but it will actually work for me to be there. I love that I mean enough to him that he would ask me to be present. I also know that he feels honored that I would choose to drive across the state for this important moment. Tomorrow is going to be wonderful in so many ways! Now, I just need to get to sleep so May 31st will finally arrive. How weird is it that I am more excited for this than I have been for Christmas morning during the last few years? Wild!

One More Walk Down the Aisle

Another year, another graduation. Last night, I watched in awe as another wonderful group of seniors crossed the stage and received their diplomas. Every year, I find myself more stunned than the year before. A friend commented at lunch yesterday, "We never get older, but the students just keep on aging." The irony is that my friend ten years ago was a senior walking across that same stage, and I was a teacher then too.

What struck me the most, though, was that yesterday DID feel different. I do know that I am getting older. I also know that time is moving faster, at least in a relativistic sense. Some of that is a result of part-time employment. Some comes from the nature of narcolepsy. But, much of it stems from my own attempts to live in the present. Rather than anxiously worrying about "the line up" at graduation for the past two weeks, I simply trusted that the night would work. I sent out a few emails and maintained and updated the informational document, but I did not fret. As a result I suddenly found myself standing in the basement once again directing seniors to get flowers and fixing missing tassels. Crazy.

Two other elements of the night also drove home the changes in my life. The first was my complete exhaustion. Yesterday marked the fifth day in row that I "worked" a full day. Granted, I had a three day break in the middle of those five days, but still, I was way beyond my limit. My daughter and I ran a series of errands on the way home. Then, I tried to get a couple of things done in the house and made her dinner. Finally, I settled in to eat my own food, but my wife also needed to unload about her day. By the time I left for the graduation (much later than I usually head out), I was a bit worried about my ability to drive. I knew I would perk up at the ceremony, but I also thought the drive home might be dicey. The line up and ceremony did stoke my fire, and clearly, I survived the drive home. Yet, I knew the entire time that I was spent. Even the "congratulations" and hugs after the ceremony did nothing to enliven my spirits. I needed to get to bed! That is a radical departure from the past, but it is the firm reality of my present (and likely future). That said, I do enjoy being present for my students on the first night of the rest of their lives.

The second observation of the evening was my immense awareness of my own impact. I have regularly worried throughout my health ordeal that I do not give enough anymore in the classroom. Last night reminded me that nothing could be further from the truth. While members of the Class of 2008 experienced many of my worst moments during the past four years (taking numerous sick days, my medical leave of absence, teaching without medications), I know I made a difference for a number of these students. Repeatedly, students thanked me for what I had given them. One student stopped me and told me that my Composition class in her freshman year remains her favorite class at CDH. It was in that class that I missed so many days that I decided to take the medical leave of absence! Yet for this young woman, I still managed to create a class that had a lasting impact.

Lest I had any doubt about the lesson of last night, I found two notes in my box this morning. Two of my favorite students wrote to me, thanking me for what I had provided over the past four years. One was from the student speaker at graduation. What she wrote literally made me cry. The joy that welled up in me was overwhelming. In the worst physical and mental years of my life, I helped create a special experience for an amazing young woman. As a teacher you dream about reading such a letter of praise once in your career. I got two in one day! Much of what both of these students mentioned were gifts and abilities they already had in abundance. They are also stunning for even thinking about saying thank you - that's not part of the deal. At the same time, I do make a tremendous difference - even when I am run down and exhausted. I have learned so much this year, but the clearest lesson is that my narcolepsy is a hinderance, but not a deterrent. I will continue to teach and to do it well. I owe it to myself and to these students who are kind enough to remind me that I still have much to give.

Interestingly enough, today was horrid. Pushing for so long, I slept through the 1 AM dose of my Xyrem. I could not get on track all morning. I barely made it to school on time, even though my first (and only) class started at 11:50 AM. Finally, I forgot to take my 12:30 PM stimulant dose. While all of that is frustrating, I still had a smile on my face and a bounce in my step. I make a difference, and that will get me far each day - even if narcolepsy does "win" sometimes!

Sharing Saves

My wife read my wall blog. While she had a good chuckle and significant sympathy, she also asked if writing the blog helped me with the emotions. I think I said, "yes," before I actually opened my mouth. I am astounded how much blogging has helped me. I shouldn't be surprised of course. As a writer and a writing teacher, I know that my students and I always feel relief. Expression of any kind is glorious, but it gets harder to remember that when one turns the focus internally.

I also love that people are reading this. Whether anyone comments or not, here or in person, the fact that friends and strangers find something in my words lifts my confidence and coping skills. Even a day like yesterday diminishes in terms of self-deprecation when I recognize that it will make a tremendous blog post - honest and humorous. More than that, though, is the sense that I am doing a greater good. By sharing my story I hope I am helping other narcoleptics and their friends and families. Whether it allows someone to feel less insane, or lets a person see that a sibling or friend faces true struggles and is not "simply lazy," I want to believe that I am helping. And, that too raises my own strength.

I know that reading the stories of other narcoleptics on Facebook and MySpace has been an incredible boon for me. Next weekend (wow, only five days away) I finally get to attend MOONS, a Minnesota based narcolepsy group. I missed an early meeting for a friend's wedding. It was absolutely the right decision, but I am now bursting to trade stories with other folks in a face to face setting. It will be stunning!

Having said that, I am also continuing my online quest to find more narcolepsy blogs and videos. I have listed a few other blogs on mine, but haven't seen any posts on them recently. I still hope I can find a few other folks like me - essentially people who won't shut up. I would LOVE to read their stories, whatever they are. My latest find are the videos. A dear friend sent me the first one, which I finally watched last night (sorry, mistawulf). The video was made by TogetherforPeace. I even found two others - discuscatcher and sofiarune. All three videos are great, and each is drastically different. More than anything, I appreciate the ways that these videos demonstrate the diversity of this disease. Each videographer has unique story, and yet all are rooted in this wacky condition. Eventually, I will figure out how to post their links on my blog - since they are simply trying to do what I am doing - processing the illness and hoping others will understand.

Oh, if anyone is wondering, my hand is still swollen. I might ice it some today, but I do find merit in letting the pain (which is not bad) remind me of my foolishness and my need to be honest mentally, emotionally and physically.

Hypnogogic Hi-larity

I know that I have had hypnogogic situations before, but today is the first time that I know that I have had a hypnogogic dream. These dreams are intense REM experiences that feel and are experienced as real by the narcoleptic. My previous examples come from classes in college when I wrote things that were in my brain as I dozed in a lecture rather than what the professor was saying. They also come from my own classroom when I would doze (pre-medication) during student presentations. I would make written comments about the things in my head, rather than the actual items that my students were presenting.

This morning, I was waking up, but was extremely tired. Pan (our youngest cat) was gently reminding my to feed him - to no avail. I kept looking at the clock and attempting to rise, yet the bed continued to pull me back. My frustration started to build because it was getting later and later. While today is a day off from school, I definitely knew that I had to start on all of my work early. As the clock passed six and I had not arisen, my angst jumped another level. Finally, after losing the battle repeatedly, I dragged myself upright, confident that it was close to seven AM - angry by now. As I checked my wife's clock (the accurate one), it read 5:25 AM. Now, we have both had clock problems of late, so I shifted my gaze to mine - the same one I had watched switch from 5:59 AM to 6:00 AM about an hour earlier. It read 5:18 AM (it is seven to eight minutes slower than my wife's). As Pan rubbed against me, still hungry, I realized that the battle with my alarm and my fatigue was a dream - one that I completely believed, making it hypnogogic.

I find this particularly interesting because it is my first one - that I remember. Clearly, my educational experiences (as teacher and teachee) indicate that I am capable of these bizarre occurrences, but never having them in my sleep left me wondering. I RARELY remember dreams. My wife and daughter, as well as numerous friends, can vividly describe dreams that they have had. Other than a horrid dream involving a ghost and a witch that I had as a young child (we are talking 5-7 here), I can barely remember even snatches of the handful of dreams that I know that I have had. There is one with an amusement park and another with teaching. That's it. Given both my irrational anxiety level and the fact that many narcoleptic describe terror filled hypnogogic dreams part of me thinks I lucked out not remembering my dreams. But, another part of me wonders if my hypnogogic dreams, which I possible block out of my conscious mind, are a root cause of the irrational anxiety. I have no idea if that is possible or not. I do know that if my typical hypnogogic dream is anything like the nightmare I had as a child (and it is possible to block these things), I could easily see my subconscious making the decision to isolate them.

I have no idea if my theory has any grounding in reality, but it is interesting to ponder. I do know that my stress and anxiety this morning were real. I got up completely agitated that I had not been able to wake earlier. I was furious with myself, and then I came to terms with reality - it was a dream. Weird. I am excited, and more than a little frightened, to see if I have and remember any other hypnogogic dreams. I also will start doing some research to see what I can learn about not remembering dreams.

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!

Just Another Wacky Day

I had thought my next blog would be about the amazing experience of being in my men's group. I also considered a blog entry on the importance of therapy. A third topic choice was the vitality of friendship and its importance in my life. Nowhere in my planned list of entries was "completely insane day centered on your wife's health issues." And yet, here we are!

My wife is amazing. She truly stuns me on a daily basis. Not only does she manage to love me unconditionally, even with the gloom of narcolepsy hanging over me, but also she daily proves that nothing rivals the affection of a mother for her child. Our daughter goes non-stop and taxes both my and my wife's reserves. Since I don't have much, my wife bears the brunt of the parenting, and virtually every other home life responsibility. Rather than becoming feed up with our child, my wife's enthusiasm for our not so little girl grows with each challenge and demand. It is astounding.

Beyond that, the love of my life is also a phenomenal editor and writer. Her work at the University of Minnesota Medical School has already garnered her a tremendous reputation. Recently, she facilitated a four session workshop on grant writing. Every week she had 50 doctors and researchers engaged for an hour and a half - about writing! She is even better one-on-one and rarely does someone walk away dissatisfied from working with her. Her professionalism and dedication are the stuff of legend among her peers.

Given all of that, it is unbelievable that we spent the afternoon running around dealing with her health issues rather than mine. She is the strong one; I am the ill one. Yet, she has been struggling for weeks with fatigue and stress issues. We have even discussed the possibility that she might have a sleep disorder. Talk about irony! Today, though, went well beyond speculation. Periodically, my wife has had severe abdominal pain. The working theory has been that she experiences ovarian cysts in those episodes. She had a situation last week and even got to discuss it with her other concerns during an appointment with her nurse practitioner. They did a number of tests, and many have already come back normal.

Then, today, my wife called me right before Noon. I was in the middle of class and could not call her until the class ended. When we finally had the chance to talk, she told me that she was experiencing the pain again and was unsure if she could drive. She did manage to get home. I then headed home to get her and brought her to her clinic. After getting our daughter at school and canceling my own appointment, we returned to the clinic to find my wife still waiting and in pain. She finally headed back and was there for an hour. An X-Ray showed nothing significant, and my wife got some Mira-lax in hopes that would help. We still needed to get her to the hospital, though, for a pelvic ultrasound. We don't have those results yet, but my wife is convinced they will be normal too.

She headed to bed as soon as we got home. I must admit that I am scared. My wife's dad has had some major health issues - surviving colon cancer, sleep apnea, type II diabetes. At one level I am sure that she is fine, but it also frightens me that someone as tough and driven as my wife could be incapacitated in this way. The reality is that NOTHING has ever slowed her down when she needs to get things done. But, whatever this is, it has stopped her in her tracks. It is also eating at her that she feels so limited. The quirk is that she keeps checking with me to make sure that I don't think she is being lazy. It is almost laughable that she would feel that way. For seven years, I have barely been able to function due to mysterious and strange health issues, yet she worries that I will think she is weak after a day of pain. Of course, I am complete empathy. Unknown medical problems are horribly frustrating. My own issues have (and sometimes still do) driven me bonkers. Given the way our culture treats illness, it is no wonder that most of us beat ourselves up for getting sick. Being a drain is bad, thus we must be bad if we are sick. How warped is that thinking? Yet, we all do it.

I desperately hope that nothing is seriously wrong with my wife. I don't know how we will weather the reality of two limited adults in this house. But, if something is deeply wrong, I honestly hope we can find it soon so my wife does not have to face the medical nightmare that I experienced, moving from specialist to specialist, never getting a clear answer. The most irrational moments that I have are the ones where I convince myself that I have somehow given my wife this illness. So many of her symptoms mirror my early ones. Of course, that could just be me making myself the center of attention, rather than providing my wife the attention and care that she deserves. Please keep her and our whole family in your thoughts. Thanks!

Have Tos and Should Haves

I keep forgetting the rules. Rule number one of narcolepsy is as follows: if things are going well, don't talk (or blog) about it. Rule number two of narcolepsy reads like this: never forget rule number one, or you will be sorry. Yesterday, I wrote an upbeat blog about how well the week went even with my problems earlier in the week. Hello, Mike! Did you not read your own blog on hubris? Rightly so, the fist of narcolepsy smashed me today. I fell asleep last night answering one last message from a friend. My wife found me at the computer at midnight - sitting up and asleep. I assure you that no amount of Xyrem can make sleeping like that worthwhile. Needless to say, it was awful trying to get out of bed today. I did get to ultimate practice and even did the run, pylos and the first drill. Then, the dizziness set in and I was finished. I went to the fair at my daughter's school after that and watched her play her horn and do her poetry. Somehow, I even got some shopping done. But now I am totally wiped and that is not good. We are leaving soon for a friend's birthday party. I will sit like an antisocial lump and then try not to beat myself up tomorrow.

That psychological struggle is also weighing heavily on my mind today. My psyche regularly bombards me with the list of "Have Tos" and the other list of "Should Haves." Either list alone is sufficient to make me crumble, but days like today seem to call for both lists to rain down together. Basically, I experience a "perfect storm" of guilt. Here is a sampling of today's combined fun.

Mike, you have to
1. get all of your correcting done.
2. mow the lawn.
3. finally finish the office.
4. check all of your email.
5. answer all of your email.
6. get all of the financials up to date.
7. love your wife more.
8. spend more time with your daughter.
9. do all of your exercises so your knee gets stronger.
10. do all of your other exercises so your back gets stronger.
11. start doing yoga again.
12. use the relaxation cds that you bought.
13. start prepping for your summer courses.
14. re-read the books for your summer courses.
15. organize all of your computer files.
16. set up your new work computer to make life easier.
17. sort your clothes so you don't have so much waste.
18. help your wife get the summer house plans in order.
19. fix the 15 problems you noticed around the house today.
20. just get the dishes and your other chores done for once.

At the same time, I am also thinking this.

Mike, you should have
1. gotten more done at school this week.
2. not tried to write that last email last night.
3. done more of your exercises so you would already be stronger.
4. ridden your bike on the stationary trainer so your endurance would be up.
5. been more attentive to your wife so she wasn't feeling so alone.
6. paid more attention to the "surveys" last night so you didn't inadvertantly sign up for some stupid service.
7. known how crazy this weekend would be and expect too much of yourself.
8. planned your day better so you weren't rushing to get everything done right now.
9. cooked food during the week so you could eat a healthier diet.
10. started charting your physical condition to have a better idea of how your disease ebbs and flows.

Sadly, both lists are MUCH longer than that. The good thing is that I know those message come from highly irrational parts of my brain. The bad part is that I am less able to shut them out when I am tired and run down, like today. I get more vulnerable when I am in this state (and crabbier). The real trap comes as I acknowledge my fatigued condition and then let the "should have" voice slip in with "you should have gone to bed at 10 PM, then you wouldn't feel this way." Man, I hate that! It only spirals me down further. I am getting better at simply accepting the situation, but old habits die hard. And, they die much more slowly when I am not at my peak. I need to shower now and go to the party. I will simply work to enjoy what I can. Then, I will come home and sleep. Tomorrow, thankfully, is a new day and will bring its own challenges. While the "Have Tos" and "Should Haves" will still be there, I will likely be more prepared to do what I can and accept what I can't.

On the Mend

The last two days have been filled with good signs. Clearly, I am excited and upbeat because spring has finally arrived. I am also thrilled that the end of the school year is well within sight (even if a mountain of correcting remains to be conquered). But, the end of this week has caused me unnerving moments of joy. I certainly know that I have a long journey ahead, learning to fully accept my limits, discovering the best way to stay balanced, finding ways to exercise and work and be present without taxing myself. All of that may eventually come, but the first glimpses might have peeked over the horizon - finally.

The first few days this week were definitely hellish, but as I wrote earlier, I weathered that storm well. Yesterday and today, I not only made it to CDH on time, but I also managed to be productive and to connect with colleagues. Such things have not happened for quite some time. While I must find a way to finish out the courses I am teaching this year, I am also already evolving ideas for my course load next year. One of the hardest things for me has always been using my summer productively. Suddenly, I am finding ways to start on work before the summer. I know that I am unhappy with my current course load and must factor that into this, but I also know that the excitement I am feeling for fall is buoying me up in ways that I could never have anticipated.

More clear than getting to work and being productive is the obvious improvement in my physical strength. I had my final day of physical therapy today. I will continue the multiple strengthening exercises and must begin to rebuild my endurance, yet the improvement I have made in the past four weeks is astounding. My physical therapist was definitely impressed, but more importantly I am too. I have always been good with focused training goals, but I have struggled with even basic exercise goals the last couple of years. I know that I would have been unsuccessful even two months ago. I am finding drive in places that have been dormant for some time.

While all of this is wonderful, the best moment came on Thursday, when a dear friend remarked on my demeanor of late. He knows me extremely well. We share a classroom this year and co-teach a summer course. In many ways he knows more about my moods and mannerisms than anyone except my wife. On Thursday he told me that I "seem more Main-like of late." While the observation seems simple and unassuming, it meant the world to me. The friend knows much of what I have experienced. He has faced (and still faces) his own major health issues and does not make statements like that lightly. Our relationship actually extends back over 12 years to his presence in my classroom as my student. Having seen so many sides of me, I know that he would not say that I am more "Main-like" unless he honestly believed it.

The road remains long. My life has taken a bizarre turn over the last six or seven years, but I know more than ever that I am on the proper path. I have many things internally and externally to overcome. Illnesses, physical and psychological, still loom over me. Yet, I know that I am moving forward. I am getting stronger and healthier. I am also working to remain relaxed and balanced. Most importantly, I continue to let myself be happy and joyful, and that is true progress.

Time Just Keeps Slippin, Slippin, Slippin into the Future

My single goal for tomorrow is to arrive at my job BEFORE the end of the third period. See, I teach in period four. On Tuesday I arrived 6 minutes into period four, or putting it more bluntly, I was LATE for my job. Ironically, the associate dean of students had my class covered. In fact a substitute and the dean were in the room when I got there. Of course, the substitute was for another teacher and had the wrong room. The dean was making sure that things were fine. I literally walked in as he asked, "So, where is Mr. Main?" Fast forward to today. I managed to walk into the school during the five minutes of passing time between period three and period four. I avoided being late by all of four minutes - yeah!

Needless to say, I would like to avoid that happening again - ever. The reality, though, is that I am having trouble tracking time this week. Strange as that sounds, it is the truth. I have had a few other days recently when I have struggled to get to work with time to spare. I have always rebounded the next day. Today, knowing that I suddenly realized how late it was on Tuesday, I was focused on the clock throughout the morning. Somehow, I was still caught off guard when I realized it was 9:30 AM and getting close to the danger zone yet again. Frighteningly, even that realization resulted in me moving slow enough to arrive literally in the nick of time.

The upside to both mornings is that I did not panic. I drove safely and managed to laugh at myself in a healthy way. Of course, that might also be part of the problem - not panicking when you might be late for work. The other insight from these past few days is that I am definitely experiencing cyclical elements within my narcolepsy. I believe it was a month ago that I had a similar week. I definitely need to chart these things far more accurately to get a clear picture, but a pattern is there. I also must do a better job of maintaining a set schedule. I have pushed myself well past 10 PM the last two nights. I missed my 1 AM dose this morning and took it at 2 AM. Clearly, I need to hold to a strict regimen when it comes to getting into bed and getting up in the morning. Even slight changes seem to derail my day, and I am painfully aware that major deviations result in monumental problems - like not getting to class on time.

I am grateful that I continue to learn about my condition, but I hope to have a break from such brazen insights as I have had for the past two days. I am tired and run down, but I also know that I am slowly regaining perspective on how to live my life with hope and joy. As long as I keep getting to work on time, I might just start to smile again!

All My Heroes are Women

Maybe it is carryover from Mother's Day, but it struck me today that a majority of my heroes right now are women. I know I am not the only person who would fall into this category, but it still strikes me as unusual because "hero" is often reserved as a term for brawny males in tight costumes. I also find it strange that my heroes are constant elements of my daily life. These women that impress me and inspire me are my mom, my sister, my daughter and my wife.

Clearly, seeing my mom yesterday sparked this train of thought. She has been wrestling for years with the strain of needing to leave the state, while still desiring a close proximity to my sister and my family. While mom would be someone special to me no matter what (she managed to birth me and my giant head after all), yesterday touched me deeply. After all this time, my mom is nearly ready to leave behind the world she has known for the past thirty-five years. I share a number of traits with my mom, but one of the most glaring is our aversion to change. Neither of us likes the idea of uprooting everything. I know that this idea of leaving Minnesota scares her, but it was amazing to hear her own that. She is clearly still struggling, but she is pushing herself forward because she knows it is the right thing to do. I also know that she worries, as I too often do, what others might be thinking about her. Even in that, she has rallied her spirits and is preparing herself to do this frightening thing. I am so proud of her and hope that I can continue to muster that level of strength to face my own struggles.

Certainly as impressive is my sister. She has been a rock for mom throughout all of the difficulty of the past few years. My sister lives closer to my mom, but has done far more than her share in being present for mom. While I can use my health and own struggle as an excuse, the reality is that my sister is a much stronger person than I am. She and my mom have clashed horribly at times, but my sister never gives up on my mom. For a long time, my similarities to my mother kept me away from the entire situation because I could not separate my own issues from those of my mother. While I am more like mom, my sister certainly has plenty of my mom's quirks too. Yet, she has constantly been able to rise above those and help our mother in countless ways. That depth of character awes me. I only hope that I can eventually grow up and be like my little sister.

I have a small part of me that wishes my third hero would never grow up, but I know that all young girls must someday become amazing women. My daughter amazes me. She exudes life and excitement every moment of every day. She loves to make music - on her trombone, on the keyboard, in her head, with her words. The amazing part is that she looks for new ways to challenge herself. My daughter loves to learn for the sake of gaining knowledge. She reads like mad and loves almost every book that she reads. Even if she doesn't like the book, she works to finish and appreciates the story for what it is. She is also an amazing poet. At 11 she has more linguistic skill than I have mustered in my entire life. The most amazing thing about her, though, is her tolerance for her grumpy, sleepy dad. Because of her high energy and my wife's busy work schedule, my daughter tends to bear the brunt of my ill will. While she certainly does some improper things at times, no one deserves to be the constant target of a grouchy narcoleptic. Yet, she not only handles it well, but she also forgives me even when I am a complete jerk. I regularly pray to have the patience and poise of my daughter.

In fact the only person who dazzles me more than my daughter is my wife. If anyone has ever earned a trip straight to the pearly gates, it is the incredible woman who has put up with me for almost 17 years of marriage and over 21 years since our first kiss. My wife is the best writer and editor I have ever known. She daily helps doctors and professors improve grants and papers for publication. Even more impressive is her ability to help others learn how to become better at the craft of writing. But, beyond all of her professional accomplishments, she is an unbelievable mother, wife, daughter, sister and friend. She gives love constantly and manages to maintain a crazed household in spite of her narcoleptic husband. I adore her and wish I could find her drive and compassion within myself, simply so I could give her as much love as she gives me.

I am blessed to know my heroes. I get the chance to bask in their amazing talents every single day. I hope I can continue to grow in both my appreciation of these stunning women and my emulation of them. I am lucky to have them in my life. I am even luckier to know that I can continue to draw inspiration from them as I continue my own journey in living with narcolepsy.

Humility and Hubris

My mood has been good for a week, which is incredible. My spirits have remained up even though my physical state has been sliding for days. I even managed to respond, "good, really good," to the question, "how are you?" The craziest part is that I meant it! I can't remember the last time such an answer came to my lips naturally. Given all of this, one would assume that I would be prepared for the shoe to drop, but I was not. Yesterday was shaky, but the walls crashed in today. I still managed to be social and friendly (except to my wife and daughter, which made the day even more wonderful given that it's Mother's Day).

More than anything, I regret not preparing myself for the inevitable slump that had to come. Somehow, the delusion that years of irritating illness would simply be resolved by "coming to terms" with my narcolepsy caused me to forget that we all experience highs and lows. Heck, I had weathered a week of fatigue; how could things get worse than that? The ancient Greeks loved to build their best dramas around that specific theme. Hubris is one of our most human characteristics, and I indulge in it voluminously. How can it get worse? Quite easily, particularly when multiple issues collide within the cauldron of chaos that is my daily life.

I went to ultimate practice on Saturday. While I have been doing my physical therapy exercises regularly, my endurance is non-existent. Strengthening one's knees does little for preparing the body to face the strain of even one long ultimate point. I knew that and was pleasantly surprised by how well my energy held up, even as I sat out most of the drills and the scrimmage at the end of practice. What escaped my attention was the reality that I would remain exhausted for the remainder of the day. And, the idea that such exertion would continue to sap my strength into today never even entered my mind. Well, it did, but I didn't honestly believe it. Of course, my valiant effort at practice did continue to affect me throughout the rest of the weekend. If that had been the only issue, I might have still been okay, but other factors also impacted my reality, knowing that I need to readjust my reality.

I had one task this week that my wife needed me to complete. I simply had to apply "weed and feed" to our lawn. Yet, I somehow managed to reach this weekend without accomplishing that relatively minor task. I had even reminded myself each day (except Friday) that I needed to get the fertilizing done. My wife was not thrilled on Saturday morning that my one task remained unfulfilled. We abated the tension by discussing the situation, but I knew I needed to get the job done before Saturday ended. The weather forecast predicted rain by the evening, which meant that I needed to mow the lawn and spread the chemicals before the sunset. Not a problem, I thought. Of course, I should have remembered that the "gods" don't like such human arrogance. I returned from practice as the rain began to fall. It had not started in Saint Paul by the time I got home; it simply waited until I brought my bag inside. When I returned to the driveway, the precipitation was heavier than a sprinkle. Still, I managed to mow and fertilize before things got bad. The problem was that I was already shot before I did the yard work. Taking care of those minor items took any reserves that I had left. It was barely 1 PM, and I was done for the day.

Clearly, plenty of Saturday remained. I only did a few more things before we left for Church. After Mass we had a surprise party for a friend's birthday. Then we headed home and got some food on the way. I ate late and took my medicine at 11 PM instead of 10 PM. The power went out over night, and I missed my second dose. I did take it at 4 AM, but then did not arise until 8:30 AM. Eventually, I "got ready," but we were 30 minutes late for the Mother's Day celebration at my sister's. The day was good, but I struggled to focus the entire time we celebrated with my mom. We finally got home at 6 PM. My wife and mom had enjoyed the day, but I had not been overly social, not had I done anything. While I eventually buckled down to accomplish a few things, I also managed to have a minor fight with my wife. I even snapped at my daughter and stressed out completely when I couldn't log on to the Science Museum of Minnesota's membership site. I did discover my error, but not until I had upset both of the wonderful women in my life.

In the end nothing horrible happened. I accomplished a few tasks and did uphold my duties. My wife even enjoyed her Mother's Day. But, I need to remember that bad things happen every day. Even when I feel like things can't get worse, I must recognize that they can and OFTEN do. Every day is a blessing, even when nothing goes correctly. I have done a remarkable job of letting myself experience the highs and lows of my life. Now, I must forgo the assumption that a week of negativity physically demands that I be rewarded in some capacity. I am owed NOTHING, and I must remained grounded and accepting of everything that life (and this condition and reality and God and fate and medical science and...you get the idea) brings my way. My goal needs to be staying grounded, regardless of what has (or has not) happened. I must stay humble, and I must avoid hubris.

Serendipity and Liars

Long ago, I had the chance to teach M. Scott Peck's book, The Road Less Traveled. Aside from using a line from a favorite Frost poem, I felt drawn to the book. While many of the stories and ideas had tremendous impact on me and my students, his discussion of serendipity fascinated me. The idea is that the right things often happen at the right time. One could try to use the word luck as a synonym, but serendipity feels far more intentional than blind luck. Peck's stories from his patients amazed me, but then I began to consider my own life. I found multiple examples of serendipity. I tend to use the concept of God, rather than serendipity, but the implication is the same. Periodically, we are lead to a greater sense of the world and ourselves by a force, a being, an entity far greater than ourselves. I also know that I am in one of those times right now.

Whether it is my incredible experiences of connecting with people in Facebook and MySpace (particularly around narcolepsy) or the act of writing this blog, numerous events have screamed at me that something much bigger is happening. The latest instance is a therapy approach called EMDR (Eye Movement Desensitization and Reprocessing). It is used primarily for people who suffer from post-traumatic stress disorder. A wonderful friend with whom I have recently reconnected (through Facebook no less) has been undergoing the treatment and suggested I look into it. Then, a woman I have never met raised PTSD in one of the Narcolepsy discussion topics. After trading a series of messages, we both released there were an unusual number of links between us. Finally, while exploring it further on the EMDR Institute's website, I found a list of therapists trained in EMDR. One of them is the mother of another dear friend. I know I need to pay attention to this.

I discussed EMDR with my therapist today, partly to process this serendipity that has struck and partly to get her reaction. She and I both agreed that I don't seem to have a clear event of PTSD, which would make EMDR a strange route to pursue. At the same time I do think it is worthwhile for me to examine my traumatic life events to see if one or more of them does have legs. I may also at least discuss the treatment generally with my friend's mom. The bottom line is that all of this is pushing me to explore my own psyche more. That is fantastic.

Peck has been on my mind for another reason too. He wrote another book called People of the Lie. The premise of that one is that certain people simply can't help but manipulate others. They are driven to think only of individual advancement and glory. When I first read that, I could not conceive of anyone who would fit so awful a description. But, as with serendipity, I began to realize that I have known people like that. In fact I had encountered them in many places. Recently, the book has come to the fore due to my wife's job. Multiple times each week, she needs to unload (on me) her frustration with a colleague who fits Peck's people of the lie perfectly. In many ways it is sad because it has driven my wife batty. She desperately needs to decompress, at times almost daily, because of the poison that this person injects into their office. Worst of all, the individual honestly believes that these actions are benefiting others, rather than simply existing as self-promotion. Thankfully, I believe my wife may not have to deal with this person much longer. Even last night, though she works to avoid this person, she needed to talk to know that she is not crazy. She hadn't even had a direct interaction, but the power of this liar (I am taking license with Peck's idea here) is so strong that even indirect contact can significantly wound someone as intelligent and as amazing as my wife. How sad!

I feel blessed to have had this chance to read Peck's work. It certainly has merit. Then again, as my students would tell you, I tend to find connections and insights everywhere. I get a little too excited about life in general.

Attitude is Everything

What a weird week. I have felt "off" since Sunday. It is certainly not the first (nor will it be the last) time that I have found myself struggling physically for a number of days in a row. What makes this particular stretch unusual, though, is the fact that my mood had remained upbeat. My stomach and bowels have been horrid. My head has been swimming every morning. As much as my knee is improving, both of them still hurt. I am behind in my correcting, stressed about the messy state of our home, and worried that I am not doing enough for my wife and daughter. But even with all of those things (and hundreds of others) spinning in my head, joy continues to percolate up to the surface. By all accounts my mood should be foul. Instead, I still have a smile.

I know that many dark days (weeks, months, years?) are ahead, but I also know that I am beginning to accept - truly and honestly - what it means to have narcolepsy. I have know cognitively for the last few years that I am limited. I have also realized for the last few months that a clear medical reason exists for those limitations. What has changed is that I am finally allowing my heart and soul to accept this reality. Emotionally and spiritually, the facts of my narcolepsy are finally settling. I am beginning to find peace internally and externally with who I am. I not only know that I am doing my best, but I actually also believe it. That is progress!

I started this blog last night (after taking my drugs which led me to the wise decision to finish it today). Usually, I would expect the great mood I had yesterday to disappear - simply to spite me. But, when I awoke this morning, everything was the same. EVERYTHING - meaning that my body still felt awful and even that was okay. It is crazy, at least it is for me. I was even late for my therapy appointment. While I felt bad, most of my remorse centered on not being able to use my full time to discuss how well I have been handling life's challenges. I am learning to let go and to allow myself the mistakes and errors that are a human reality. Maybe I will even learn to let the lessons of this week continue to build into next week. I guess I will see.

Off Day, Lifted Spirits

I know a day will come when I am not surprised by the irony of my life. Likely, it will be years from now, and I will miss the irony due to senility rather than its actual absence, but I am sure the day will come. Until then, I will simply have to accept that I am blind to my own observations. I regularly comment on the paradox of life, but then get caught off guard when my own paradoxes spring to life at a moment's notice.

Today, I woke up and knew I was off. I could feel the slight swimming of my world even as I fed the cats and took my meds. Such days are never good, but at least my spirits weren't dampened by the dizziness. I got back into bed, ate my breakfast, did the sudoku, read the sports section, chatted with my wife and daughter, and even loved the cats. I also had at least four bowel movements, realized my intestines were horrid and continued to feel unbalanced. As my wife and daughter headed to work and school, I remained grateful that my mood was still decent, even while my day was clearly going down the drain. Perhaps, the ill feelings were a result of me channeling my frustration of four days of starting a DVD that I knew were ahead at my job this week.

I finally got moving and did my knee exercises. I got ready for school and had two or three more bouts with my bowels. My casual drive in got me to work with a half hour to spare. I had a couple of good conversations and tried to find a few friends. I eventually got to chatting with two wonderful teachers, and we shared our weekends. This awful day still had its redeeming moments, I thought. When the bell rang, I made my way to my classroom and got the DVD set up. Although I couldn't focus on any correcting, I did clear up some issues with three students. I also got some planning work done for my new course starting in the fall. I had another bowel moment and wrestled with a full bladder, but made it to lunch and still had a smile on my face. I began to wonder what kind of day it was - awful or great.

Lunch was good and meeting with my team for next year was even better. My final class again found me regretting the lack of student interaction, but also getting more work done. I dashed to my massage and entered the twilight zone. Some woman was yelling at the awesome staff at Langford Chiropractic. Turns out she was the first of a string of unique customers today. Still, I got my massage and experienced tremendous pain and relief all at the same time. My massage therapist is incredibly skilled, but my muscles are horribly tight - once again, awful AND great. Yet, when I got done, I was late picking up my daughter after band. I beat myself up in the car, but kept losing my train of thought. Sometimes, narcolepsy is a blessing! Naomi was waiting in a friend's car for the second time in 5 days (same friend too), thus I felt more shame. But, as I headed back to get my chiropractic adjustment, I again felt lighter. My chiropractor was excited to hear how well things are going with my knee.

The final moment of insanity happened at home. My wife was already home and thrilled to see both me and our daughter. Somehow, though, everything went south (and I was still having bowel issues). My daughter made a snide comment to me. I fired back a few moments later, and then my wife got upset. Normally, this scenario would make for world war three. Today, we all retreated and then forgave each other. Within 30 minutes we were all sitting together talking about life and evening plans.

The beauty of life's paradoxes is that a day like this, filled with shame and anger and illness and pain, can also be a good day. In fact, today was a great day. I am most stunned at this moment by the realization that I should have been a wreck today. Whether it was my bowels, or the embarrassment of getting my daughter late, or the pain in my muscles, I should have fallen apart. Instead, I have remained upbeat. I love that my rotten days can, at times, produce days like today. So many things went wrong, and yet I can only think of what has gone right. Perhaps my understanding of balance is not so far away.

Needles are My Friend

Every other Monday, my heart skips a beat. No, not another health woe. Instead, it is excitement. I spend 30 minutes on those Mondays appreciating ancient wisdom. The friendly needles provide me relief, relaxation, energy and peace - all a result of trusting my acupuncturist. I started using acupuncture in March of 2005. That was one of my lowest points in this journey. I had started the 2004-2005 school year with my energy of old, but that quickly evaporated and took my hope with it. By December I was missing a least a day a week, often two. When my principal called me in and told me, "we had a problem," I knew something was horribly wrong. Wisely, I chose to take a medical leave of absence. It was during that trimester of not working that I finally began to dig into my mental attitude around all of this. Given that I am still on that journey, the process remains slow, but the time off gave me the place to start.

The best two discovers that I made during my leave were yoga's impact on me and the power of acupuncture. In combination I found places of peace and fulfillment within myself that astonished me. The yoga lasted until the next fall when my stress of the school day and my undiagnosed narcolepsy eventually led me to forgo attempting it. I have yet to re-establish a routine for it, but it is a top priority goal as I work towards building a healthy schedule and structure for my life. The acupuncture disappeared more quickly in 2005. The problem is that it worked.

I began by seeing my acupuncturist twice a week. She had energy moving within my body almost immediately. I distinctly remember feeling currents running amid the needles as she inserted them. With each new needle, the energy had more room to play. By the time she left the room, I could feel energy ready to burst from me as laughter. It was incredible. Soon, though, she realized that I needed an herbalist's touch too. She sent me to another practitioner within her clinic. His approach was to treat my back, rather than my front. Although the experience no longer felt the same - no more lightning races within my body - the results were even more drastic. As we moved into summer, my energy remained strong and my sinuses were the best they had been in years. I know it was a combination of his herbal teas and precise needle placement, but I was thrilled to go to acupuncture each week.

I started teaching again that summer, which provided a wonderful "test." Due to the hours of the summer program, I couldn't get acupuncture for two weeks. I missed it, but I still felt strong at the end. My practitioner and I were both thrilled. We stretched the next appointment out three weeks and saw similar improvement. We both thought a month would be the best test of all. He made me a huge batch of my herbal tea, and we scheduled an appointment to hit the window of time between a major family trip and my school trip to Scotland. We also thought that the idea of once a month would be perfect for the school year.

Then, the bottom fell out of everything. On my family trip, I caught a cold making my sinuses a mess. My ENT actually put me on an antibiotic when I returned to Minnesota. The bigger blow came in a letter from my health care provider. Apparently, acupuncture was only covered for twelve visits TOTAL (as in your lifetime), unless you needed more to get "better." Since I had improved, I was obviously better and would not be able to have my visits covered any more. The letter also clearly stated that "maintenance treatments are not a covered item." While it was not the first, nor the last, disappointment in my medical odyssey, it made no sense to me. I was going to an acupuncturist that cost a fraction of a doctor visit, not to mention the antibiotic costs that would come with more sinus infections, but I couldn't see him any more because I was better and maintenance treatment is not covered (even when it saves money). Brilliant!

I considered trying to appeal, but the bureaucratic nightmare proved too daunting. Plus, I was leave soon for Scotland, and the depression this setback trigged sapped even more energy. As a result, I didn't see another acupuncturist until last fall. In my mind I always knew I needed it, but we switched medical plans in January of 2006. I decided to trust my new primary doctor and let him look for the roots of all of my medical issues. I certainly don't regret that, but I kept putting off the acupuncture because I didn't want to introduce a new variable into the bizarreness of my health. Finally last spring, I made the decision that I was done playing games with Western medicine and resolved to figure out how to get acupuncture again. I also knew that massage and chiropractic care would assist me.

Of course, I didn't stop dancing with Western medicine, but that's okay because we finally figured out the narcolepsy. Proudly, though, I didn't give up on finding an acupuncturist either. I started at my chiropractic clinic (Langford Chiropractic in Saint Paul, MN) in July of 2007. What an amazing place! My massage therapist is amazing, and my chiropractor specializes in sports medicine. Both are incredible at what they do. The other big draw for me, though, was that all three chiropractors were working on their acupuncture licenses. Once they had those, my health care provider would possibly pay for my treatments. As pleased as I was with my other services at Langford, though, I decided not to wait for the chiropractors to get their credentials done. My wife and I agreed that I should simply start acupuncture in September.

Immediately, I knew I had found the right person. My acupuncturist clearly works to understand who I am and treat every aspect of my condition. She sees what is happening with me in a far more holistic way, taking a genuine interest in everything that is happening with me. Once again, I know that I am starting to heal in many ways due to the wisdom of an ancient culture. Needles placed in key spots make a massive difference for me. The other amazing aspect of my treatment is the use of electricity to stimulate key needles. Today was tremendous. The electrodes were placed on needles in my legs, and I could still feel their impact as I drove home. While both my sinuses and my narcolepsy benefit the most from acupuncture, it also has had a major impact on my knees getting stronger and keeping my dyshidrotic eczema in check. I wound up being treated once a week for much of the end of 2007, but we had to cutback to every other week due to financial constraints. I may get to increase my treatments again, though, because Langford Chiropractic tried billing my provider for the acupuncture. It is being covered now that the doctors have their official acupuncture documentation.

I honestly relish the hour I get to spend in acupuncture every other Monday. While the idea of using needles to treat pain and illness unnerves many of us in the West, we need to remember that this approach predates ALL of our own medical practices. The techniques have worked for thousands of years. I hope more people do try it. I had physical therapy today, and my therapist balked at the idea of having needles put in him. He worried that his own phobia about needles would eliminate any benefit the acupuncture would bring. I can't say, but I do know that even when I do open my eyes and see some needles in front of my eyes, I barely even register them. I am too relaxed and centered to let anything bother me. Obviously, I write this blog for me, but if you have happened upon it because you are narcoleptic or are suffering in some way, I hope you will consider acupuncture. It is the BEST medicine I have encounter in my long and tortuous (not torturous, although it has felt that way too) journey.

Aggravation

I wanted to be relaxed today. I wanted to not worry about my energy level, to get something done around the house, to be on track. But, I am not. Instead, I am out of sorts. In fact, I am torn. One of the best things I have found in the past year is Facebook. I do use MySpace too, but find Facebook more accessible, more well run, and more user friendly. My largest frustration of late, in terms of my narcolepsy, had been having no one with whom I could discuss narcolepsy from an "inside" perspective. After setting up a Facebook account, I searched for narcolepsy groups on a whim. The results blew me away. Many groups existed, and the largest Narcolepsy Support Group had over 400 members. I decided to visit and within moments joined.

A similar group exists on MySpace, and between the two I have already made new friends, connected with a number of other narcoleptics, traded stories and even helped others. I know that finding these groups will continue to be monumental in my journey to find peace and acceptance with this condition. I already love social networking for many reasons, but these groups afford me an opportunity I could have no other way. I can stay in contact with a plethora of people all of whom are on the same journey with the same disease. We each experience narcolepsy in our own way, but the peace of mind that comes out of reading even one post in these groups is better than a life time of therapy. I adore Facebook for this alone.

As an educator, I always look for ways to bring meaningful aspects of my life into my teaching. Given my experience with Facebook, and the fact that many students already have Facebook and MySpace accounts, I immediately being to scheme for ways to use Facebook in my classroom. Certainly, it would be cool to have a method of letting students know about assignments while they are on Facebook. It could also be an amazing portal for students to connect with peers around the world. What better way to help students understand our global world than letting them discuss books and ideas and concepts with people throughout the world. I am sure that more ideas will percolate to the surface if I do pursue this plan. But, I know I will meet with resistance. Facebook and MySpace and social networking in general has a PR problem. Parents, educators and adults in general find social networking sites at best a waste of time, at worst something dangerous and frightening. Whether it is fears of pedophiles or concerns about cyber bullying or any of a number of issues ranging from screen time to exposure to evil ideas, many people would likely question my wisdom if I were to propose this idea.

My hope had resided in Facebook's policies. They clearly state that sites attacking individuals and dangerous behavior will not be tolerated. I wanted to take that at face value (no pun intended), but knew I would still meet resistance. Then, a Facebook group popped up that not only attacked a colleague at my school, but also contained clear slander. I reported it, and the group was down within hours. My heart soared because Facebook clearly meant what they said. That was Tuesday morning. Unfortunately, the last six days have greatly undermined my initial enthusiasm.

Two more slanderous groups have appeared, as well as material on a previous group (which also attacks another of my peers). I have reported all three. Two of them in multiple ways. For one group the clock since my report is now well over 120 hours. The other two reports are more recent, but one is nearing 36 hours. I realize that the administrators of Facebook have thousands of issues. I also know that I may appear to be the one who has a "problem" because I am filing all of these reports. I certainly don't expect them to evaluate content. Negatives sites are a fact of life, but when reports are filed on sites that are clearly in violation of Facebook's policies, I do expect that timely action will take place. Now, the two recent sites have been reported during the weekend, but the 120 plus hours for the third group is inexcusable.

What recourse do I have, though? Quit Facebook? No, that only hurts me. File more reports? I can't through the groups, and I would guess that multiple emails would also lead to my removal from the network. My bigger aggravation in all of this has two branches. One, if I was worried about the possibility of using Facebook in my classroom before, I am close to pushing the thought completely out of my head. Since there appears to be no way to ensure that a negative page about a student would come down in any timely way, I doubt that the administration would ever give me permission to try. Worse, the people putting up these groups, and undermining these cool possibilities (not to mention ruining the life of my colleague) are former students. I am responsible for teaching them (or perhaps NOT teaching them) that behaving in such a way is unacceptable. One of the reasons that I want to use Facebook in class would be to help my students understand how to be responsible citizens of online communities. Instead, I fear that I am simply helping to produce more computer users who think it is fun and silly to spread lies and rumors. Of course, that tends to be the message of our society as a whole, so why should I expect my former students to be any different.

In the end, I will continue to wrestle with all of this. I love Facebook, but want to quit in anger. That is not the time to decide. I also know that I give too much energy to minor issues like this. Negative sites are a reality, and I will have to deal with them whether or not I get permission to use Facebook in the classroom. Still, I have a friend whose life is being eaten away at because other people are not truthful and honest. That is horrid. No one deserve to have vicious lies spread in this way. I do hope that I can find a way to help other students become good online citizens. I just worry that those I didn't reach in the past will ruin my chance to make a difference in the future.

Empathy

I belong to a few online narcolepsy support groups. They have become an important part of my life within the short month I have known them. I am even more excited to attend my first MOONS meeting on May 31. Having the chance to connect with other narcoleptics is amazing. My sense of isolation has become overwhelming at times. While no one, not even another narcoleptic, can understand what I am experiencing, I relish the chance to interact with people who certainly can relate.

Of course, one need not have narcolepsy to understand hardship. The more I struggle through my condition, the more fully I come to realize that it is impossible to compare (or judge) pain and stress. My journey has been horrific at times, but has also brought me so many rewards and so much grace. I doubt anyone would chose my path, but is it any worse than those that others tread? How could I say that this experience is any harder or easier than yours? I can't. No one can. I live in this insane culture where we are driven to WIN, at all costs - even if it is suffering. Think how often in the United States people play the game of "my life is worse." So many of us want to dwell on our own sorrows simply to prove that we deserve the sympathy of those around us.

Maybe it is the frustration of knowing that my narcolepsy won't go away, or maybe it is the blessing of knowing that my narcolepsy won't go away, but I want out of the "my life is worse" game. Instead, I want to use my own struggle to build empathy with each person I encounter. Rather than spiralling in on my setbacks, I want to reach out to others and acknowledge their grief. I can't understand it, but by using my own difficulties as a lens, I can at least glimpse another's woundedness. In doing that we both can heal. We can validate each other and feel less loneliness. I am not talking about martyring myself and denying my suffering. Nor do I mean that what I have gone through is the same.

The point is I know what it is like to hurt. By recognizing, instead of challenging or questioning, someone else's gashes, I can help that person to be more whole. When I explain narcolepsy to friends, they often wonder how I can survive with it. For me it is not an option - I just do. My surprise is that I am more awed by their struggles. A student of mine once remarked that he, "would have just given up" if he faced the challenges that I have. But, that same student has overcome a litany of obstacles in four years transforming from a student highly likely to flunk out into one who will head off to a four year college and a vibrant future. I have a friend who had both kidneys fail before age 21. Another friend has faced tremendous depression and is finally getting help. A third battles personal demons that can only be controlled by intensive medication, yet that friend still fills the world with joy and art.

The list could go on and on. Are any of those people better or worse off than I? Who knows! Pain and suffering can't be judged. All I can know is my own life. Certainly, I can wallow in the delusion that no one has ever faced anything as awful as narcolepsy, at least not the way it impacts me. Or, I can deny that my narcolepsy has any impact at all on the way I move through this world, scoffing at those who would use illness as an excuse. Fortunately, I choose to accept each day for what it is. I am narcoleptic, and I struggle. That experience, though, affords me the opportunity to be grateful for all that I do have. I also can use my condition as a window into the struggles of those around me. When we can be with one another and simply recognize of basic humanness, then we all have a shot at starting to heal.