Category Archives: Hope

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

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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Filed under Balance, Blessings, Emotions, Excitement, Exhaustion, Gratitude, Honesty, Hope, Insights, Joy, My story, Narcolepsy, Serendipity, Stress, 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

Driving and Droiding

We are now on the road home (Interstate-35 South). Even though I have had this WordPress app on my Droid X since last summer, I am using it for only the second time. Some of that is the result of Bite Size Life disappearing from cyberspace, but it also a result of how easy it is to fall into old patterns in my life. I become heavily focused on daily survival during the school year, and that tendency has only increased during this current school year. I expend soooooo much every day at school, not only to make sure that my classes are functioning, but also to mitigate the negative impact of my one negative colleague. I have no doubt that the experience would drain anyone, but adding narcolepsy to the mix makes for a ridiculously stressful existence. And, it gets harder and harder to think outside of the box, in terms of finding healthier ways to balance my life. Even as I am typing this post, I am realizing that I could easily post an entry after a stressful day, or even during my 45 minute break between classes. On most days, I am helping students during those times, or I am trying to get something done for our class, but remembering that an outlet and escape sits on my hip. While I am a huge advocate of utilizing technology, I know that I remain a digital immigrant because it takes me months to integrate fully technical solutions into my life. And, my narcolepsy often benefits from using technology to make my life more efficient.
Again, this post is a perfect example of my point. Usually, I would be drifting in and out of the music and conversations in the car. Instead, I feel good that I am using a few minutes to process life with narcolepsy. The more I can allow myself the chance to step back from my day, the better I am able to cope with this disease. I remember how important it is to breathe. I remember that my fatigue and sleepiness is normal and okay. I remember that I am far more than this disease, my job, my frustrations. If nothing else, taking the long view helps me to embrace the moments of joy that do come into everyday. I think that is a pretty good result from recognizing that I can blog from my smartphone.

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Filed under Balance, Blessings, Blogging, Driving, Family, Frustration, Gratitude, Hope, Insights, Joy, Narcolepsy, Travel

Magic Moment

First and foremost, I finally made it back to work today – way to go, me. Thankfully, the day was relatively low key. I still am struggling mentally and physically, but I know that getting back into some level of routine will help me in many ways. We also were introduced to an interesting program today – the Green Dot initiative (www.livethegreendot.com). The program targets power-based personal violence with strategies to encourage bystanders to become allies. While the presentations left something to be desired, I love the core concept and the message of one small action at a time is a tangible and powerful one. Hopefully, it can be one more tool in the constant struggle U.S. society, in general, and schools, in particular, use to combat bullying and verbal, emotional, and physical violence.

While the day was tiring, the highlight came at the end of my work day. A dear friend (and former co-teacher) shared an exciting event from break week. This teacher has been accepted into a doctoral writing program. Like me, this person has also had a difficult year; in fact, I would argue one that is much worse than mine. Thus, I am thrilled that this colleague will have options moving forward. The individual still needs to hear from some MFA programs too. Another piece of our discussion made my heart race even faster, though. One possibility is that this friend could join my teaching team again. If that were to happen, I would be elated. In fact, this person even proposed an option that would involve me arriving each day at 7:30 AM, and I am actually considering it. One, I would do just about anything to work with this person, but two, I have an incoming ninth grader in my home who needs to get to school around that time any way. For grade school my wife has been the primary morning driver, but I was already worried how our family would handle the change to high school. Clearly, many other things could happen, but I am feeling more hopeful today than I have in a long time about what the future might hold. It is amazing how a single five to ten minute period can make such a profound impact on me. I also love that narcolepsy has made it more likely that I am able to appreciate those moments. Rather than dwelling on a multitude of negatives from the rest of the day, I can cherish a shining instant of joy.

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Filed under Blessings, Education, Emotions, Excitement, Family, Friends, Gratitude, Hope, Insights, Joy, Narcolepsy, Parenting, Wisdom

Re-locating, Again!

It will be interesting to see if I can finally get back into the groove of blogging. The post that precede this one are all from my Blogger account. I had a WordPress account through a friend, but he has decided to move in a new direction with his own work. Eventually, I might be able to recover my posts from Narcoleptic Knights on Bite Size Life, but even if I do not, I am hoping to re-establish my blog here. Many days have come and gone since I have even attempted to post anything on my blog. For much of that time, my professional life was overwhelming me, and it still is, but I realized last fall that I desperately need an outlet for my thoughts, feelings, and emotions around narcolepsy and its impact on my life. So, we will see where this “new” incarnation takes me in the on-going journey of my health. If you have read my work before, thanks for returning. I am sorry I have been dormant for so long. If you are new, feel free to peruse my previous posts (or to disregard them completely). When I first began this venture in April of 2008, I firmly believed that the purpose of this blog was for me to have an outlet. I continue to hold to that view, but will be thrilled if my words help even one person either understand or cope with an experience of narcolepsy in her or his own life.

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Filed under Gratitude, Honesty, Hope, Narcolepsy

Happy Homecoming

We had a fantastic day on the road today. We experienced little heavy traffic, avoided any and all foul weather, and got from Hammond, IN to Saint Paul in LESS than eight hours. That includes two pit stops (one of which was also a re-fueling stop) and an hour long lunch at the Norske Nook in Osseo, WI. My wife did a bulk of the driving, but I also took a shift. While it taxed me, I handled the situations and my mood better than I did yesterday.

I drove from just across the Wisconsin and Illinois border until the first Dells exit. It turned out to be more than we had planned on me driving, but part of that was how frazzled I was at the end. Most of the stretch was good, but traffic got boggy around Madison (which frustrated me again). I also struggled with the argument that my wife and daughter had around the same time. My daughter is amazing, but she is also twelve (soon to be thirteen). She has a HUGE heart, but is prone to defensiveness whenever she is forced to confront uncomfortable issues. My wife was suggesting that our daughter start practicing her trombone soon. That did not go over well, and the ensuing conflict resulted in our daughter (once again) being disrespectful to my wife. I did not explode, but I wanted to do so. I fumed about it, though, which made my wife nervous. To her credit, she gave me space (and encouraged our daughter to do the same). My wife also confronted our daughter about the disrespectful language – in a calm and appropriate way. While I did wind up pushing 20 miles farther than I had initially planned (due to a cruddy set of circumstances – poor lane changing and an unhelpful exit configuration), we all stayed grounded.

Other than that one moment, the rest of the trip was fairly low key. All three of us were thrilled to get home, but also had a blast on vacation. I truly can’t remember another trip that ended this well. My wife and I both got some work done tonight, and we created a rough plan for the week. She needs to get a presentation planned, so she is likely going into her office tomorrow even though she took the day “off.” I am hoping to get one or two small things done around the house, but I am making a conscious effort to keep Monday and Tuesday light because I know I need to recover from the trip, particularly the realities of spending two long days in the car. Our daughter was scheming plans for herself three days ago. She even went to a friend’s house tonight. I am looking forward to spend a least two or three days with her during the next two weeks. It should be fun to “goof off” with her even as I get myself into school mode.

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Filed under Blessings, Driving, Family, Friends, Gratitude, Honesty, Hope, Humor, Joy, Marriage, Narcolepsy, Parenting, Sharing, Travel