Category Archives: My story

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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Stress Saps, Stinks, and Slows — for Sure!

The past two weeks at my new job have been insane. As the “technology integration specialist” at my new school, my primary responsibility is to get technology into classes and curriculum, but to do that there needs to be devices for students and teachers to use. Thus, much of the past couple weeks has involved updating, preparing, and evaluating equipment at the school. And, while I do enjoy being helpful when it comes to setting up a computer or moving a piece of equipment, the needs at my new school have been extreme (to say the least). The most amazing part, though, is that I have both been able to put in some extreme hours and been able to stay reasonably calm and upbeat during the process.

My work yesterday, with extremely dated Microsoft Windows PCs, did stretch my patience to its limits, but I wrapped up much early than I did on my other two excessively late nights the previous week — 10:30 PM this time (rather than 1:30 AM and 12:30 AM for the other nights). All of it, though, underscores for me how toxic my previous job had become for me. Had I attempted even one night where I worked close to midnight (doing anything), I would have been recovering for days. Now, at my new job, I have have had three ridiculously late nights within a 10-day period, yet I still have energy and enthusiasm (which is truly remarkable given that overwhelming tedious nature of the work each of those nights). I fully realize that I cannot afford any more nights that stretch far into the evening, but the fact that I have done so multiple times and still have something in the tank is mind-blowing to me.

I share all of this to underscore how deeply stress can impact a person with narcolepsy. The amount of physical, mental, and emotional energy that I expended in my previous job is staggering. Certainly, narcolepsy makes my life difficult, but battling those internal elements (brought on by external realities and my perceptions of them) exacerbated every aspect of my narcolepsy. And, the cycle of facing those stressors, wasting more energy on them, getting more run down, and then finding those same stressors even more insurmountable became its own form of torture. I find it staggering that so much of my limited energy went into simply surviving each day.

The exciting insight for me is that embracing something for which I have enthusiasm (rather than battling aggravations) gives me energy rather than sapping it. The lesson is made even more clear to me in my current situation because the reason for the late nights is mind-numbing boring work — updating software, setting up student PCs, and setting up digital services. Although those activities could prove to be stressors for me in other circumstances, I can (and do) find purpose in them at this time because they will benefit my new colleagues and our students. It also gives me hope as I begin looking for areas of “passion” within my non-work life. And that prospect is truly thrilling. For much of the last 6 years (when I was diagnosed) and even farther back than that, I have only given up activities I have loved and enjoyed in an attempt to survive. Suddenly, I feel like I could start looking for ways to spend free time that would bring me even more strength and energy.

After so many years of facing what narcolepsy “has cost me,” my world has turned on its head. Losing the enormous deadweight of overwhelming stress has unyoked my head and my heart. I am doing my best to stay calm in the midst of this new development, so I do not lose perspective. Balance is most definitely the watchword for me these days, but it is wonderful that hope, joy, and enthusiasm are now things I need to keep in check (rather than items completely missing from my daily life).

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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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>Many MOONS Memories

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

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

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

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

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>Stunning Start

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

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

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

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

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

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

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>Surreal Saturday/Sunday

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

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

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>Merry Madness

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

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

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

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

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