Category Archives: Healing

Finally Finding Freetime

I find it fascinating that this blog is constantly on my mind, that I regularly have the desire to post to it, that I know spending time writing it often brings me piece, and that I still manage (knowing fully well all of the above) to go months without adding anything to it. I must confess, though, that I am also pleased to be at a point where realizations like that do not cause me to beat myself up. The truth is that, with narcolepsy, my time and energy are limited. I am proud that I have spent much of the last year and a half working to prioritize my wife and daughter and my own well-being over anything else in my life. Of course, numerous rough spots have happened in that same period of time, but I am even better at working my way through those moments.

I am also finding it easier to be at peace with my narcolepsy and to make time for myself because I have made good choices in terms of my work environment. In January 2013, our little family hit a major crisis point, largely because I was bringing so much frustration and anger home from my job. I still loved being in the classroom, but the politics and lack of leadership was eating away at me on a daily basis. Fortunately, my wife realized that the time had come for me to leave that job (even though it meant we would now have to pay a significantly larger sum of money for our daughter’s education since she was getting reduced tuition because I was a teacher at the school). I finished out the school year, and I found a new job serving in non-classroom position at a grade school. Although I knew I would miss the daily interaction with the same set of students, the new job afforded me the chance to have a broader impact because I was supporting teachers as they worked to integrate technology into their classes. Plus, I still got the opportunity to work with students on a frequent basis. Unfortunately, Catholic grade schools function at the whim of the Pastor, and the Pastor at my new school was (and is) not a pleasant man or a good leader. To put it simply, he describes himself as a zealot with a great deal of pride. He managed to drive out the school’s principal by the end of December, and I had taken my new job specifically to work with her. I did try to work with other teachers to get the Archdiocese involved, and they did do a fact-finding investigation, but nothing came of it. I also started looking for another job, as soon as my friend resigned. Ironically, as bad as things got at the new job, they never seemed to feel worse than what I had been experiencing at my previous job. I have no doubt that they would have if I had stayed at that Catholic grade school, but my job search led me to an opening at a different Catholic grade school. I interviewed there and accepted a position which required me to start immediately. The idea of me resigning from something mid-year would have been unthinkable to me even 2 years ago, but I did not hesitate in this instance. Clearly, making the change to the new grade school would absolutely be the best thing for me and for my family. By the end of March, I was the technology coordinator at my new grade school, and I was a significantly happier man, even though I had an astronomical amount of work to do. Finding a healthier and more supportive work environment in both of my job changes in the past year definitely made it easier for me to function and to cope with my narcolepsy. In fact, both positions required me to work full time, even though I had only been working 70% time since my narcolepsy diagnosis, and the reality is that both of the Catholic grade schools needed far more than full-time work from me to get their technology up to speed. I not only managed to work full-time and to do all of the extra work, but I also have been able to be more present for both my wife and my daughter. Again, I know that is a direct result of pushing myself to make the right choices for me.

I certainly feel like I have a long way to go to take better care of myself, but I also feel confident that for the first time in years, I am on the correct path to living a more grounded, balanced life as a person with narcolepsy. My two goals for the remainder of this summer are to start posting to this blog and my “new” (started in the fall of 2013 yet without any additional posts) technology blog at least once per week — specifically because they are good outlets for me, and I want to re-establish finally some level of regular fitness routine because I know that I need to improve my physical health to make my mental and emotional health even stronger. I am also hoping that making those 2 goals public here will push me to follow through. And, anyone reading this blog will certainly get the opportunity to see how success I am.

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Filed under Balance, Blogging, Education, Emotions, Exercise, Family, Gratitude, Healing, Honesty, Hope, Illness, My story, Narcolepsy, Technology, Wisdom

Ready to Return

While I have no idea if anyone has visited my blog at all recently, I feel like the fog and haze of the past three years is finally lifting. I decide in February (with much consultation with my amazing and wonderful wife) that I needed to leave my teaching job that I have had for the past 20 years. While my health certainly played a role in the my struggles of the past three years, the reality is that my job had become a deeply toxic environment for me. While I still love my colleagues, my students, and the essential nature of teaching, the leadership and decision-making of my former school continued to drag me lower and lower into depression and frustration.

After I turned in my resignation, I felt a tremendous weight lift, but I still needed to finish the school year. Things went well, but the experience remained overwhelming. In the midst of all of that chaos, more and more signs clarified for me that I made the correct decision. While the school leadership seemed completely nonplussed by my resignation, the much clearer (and far more positive) message came in the form of potential new positions. From my classroom experiences of the last five years, I knew that my next job would involve technology integration, rather than direct student instruction. I had not planned to do any job searching until the school year ended, but potential positions kept finding me. I was interviewed for two positions in public school settings, and although I did not get those jobs, I was not only flattered, but also realized that I was definitely qualified to be a technology integration specialist. Then, as a result of submitting some of those other applications, a friend and former colleague offered me a position at a Catholic grade school. I took the job and started there on August 1 of this year. Even though the school year has not officially begun (and there is a great deal of work to do), I know (without any doubt) that I have made the right choice. I am significantly more at peace and in a far more supportive and well run environment. The added bonus is that my new colleagues are also more open as a group in pursuing technology integration.

Underscoring these positive professional changes, my personal life has also improved markedly. I made the decision to engage in professional therapy again at the end of the school year, in large part because of the impact my previous job was having on my family. The experience has been and continues to be tremendously rewarding. I have found myself, particularly in the past three weeks, looking at the world in a far healthier and more balanced way than I ever have in the past. My therapist is wonderful — in his ability to support me, to draw out my emotions, and to challenge my previously established views of myself and the world. What is most remarkable is that my therapist  has helped me to confront some of the darkest message that I send myself and to integrate them into who I am, allowing me to feel far better about myself. After many years of experiencing joy infrequently, at best, I fins myself overwhelmed by joy on a daily basis.  It has been glorious, to say the least. Even more importantly, all of this has made my relationships with my wife and daughter stronger than ever.

I am thrilled that I my life and world are in such transition and upheaval. And, I am proud to be posting to this blog once again. My goal is to post at least once a week. It will be good for me on many levels, and I still believe that it is important for me to explore and process how narcolepsy impacts my life. As was the case when I began this blog long ago, if no one else reads this, that is just fine. Nonetheless, I do hope that I can help a few other PWNs (and other folks with sleep issues) in some small way. On that note, I am already signed up for this year’s Narcolepsy Network Annual Patient Conference in Atlanta from October 18-20. Hope to see others there!

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Filed under Balance, Blessings, Education, Emotions, Excitement, Healing, Honesty, Hope, Humility, Joy, Love, My story, Narcolepsy, Narcolepsy Network, Non-narcolepsy stress, Relationships, Support, Therapy, Wisdom

Harsh Headache

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

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

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

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

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Filed under Confusion, Exhaustion, Frustration, Healing, Honesty, Illness, Narcolepsy, Sinuses

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

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

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

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

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

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

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Filed under Confusion, Exhaustion, Family, Healing, Honesty, Humility, Humor, Insights, Marriage, Medication, Narcolepsy, Xyrem

>Wiped & washed out

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

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

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

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

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>Museum Musings

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

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

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

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

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

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>Jumping into June

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

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

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

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