Monthly Archives: May 2008

>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.

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Filed under Blessings, Excitement, Gratitude, Joy, MOONS, Narcolepsy, Support, Therapy, Wisdom

>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!

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Filed under Excitement, Frustration, Gratitude, Hope, Humility, Narcolepsy, Sharing

>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!

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Filed under Education, Exhaustion, Gratitude, Hope, Humility, Narcolepsy, Wisdom

>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.

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Filed under Education, Gratitude, My story, Narcolepsy, Sharing, Videos, Wisdom

>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.

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Filed under Dreams, Insights, My story, 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!

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Filed under Balance, Exhaustion, Family, Frustration, Gratitude, Healing, Humility, Insights, Movies, Narcolepsy, Stupidity

>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!

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