Category Archives: Joy

Tiresome Travel Troubling

I have known for the last 4-5 years that traveling tends to exacerbate the impact of my narcolepsy, in terms of both my sleepiness and its impact on my overall health. The situation makes tons of sense when I think about it — my schedule gets thrown off, driving and flying for long periods put additional stress on my body, I am not in my own bed, and even changing one time zone can affect my biorhythms. As a result of this reality, I do try to allow myself extra time for recovery when I take a trip. I also do my best to balance my activities while traveling so I do not exhaust myself. Even in the best scenarios, my efforts are only mildly successful, but this current summer has put me into an entirely different place.

Because of my new job, I have already spent far more of my summer working like mad to get things ready for the next school year. So, even before my extensive travel started, I was already run down. Added to that is the fact that my daughter is in between grades 11 and 12, so college visit trips have filled up the second half of our summer. My wife, my daughter, and I visited 6 schools in 4 days during our first circuit after spending a long weekend with friends. The experience was awesome in every possible way, but it also left me reeling for the entire week after our return. And, during that week, we decided that my daughter and I would head to 2 more schools this week preceding a conference my wife is attending. All three of us think this current trip is a good idea, but it also heightened the stress level in our house, particularly as my daughter and I reworked almost an entire week of work. And, I was (and am) painfully aware that the cold I got from our first trip continues to linger. Truly, my sinuses are a mess, and I am definitely worried that I will be paying for these trips with my health well into the coming school year. Underscoring that concern is the fact that our busiest trip is yet to come. My daughter and I will make our third and final trip in the first week of August when we plan to visit 8 schools in 4 states during a 5 day window.

Although I do fear what all this flying and driving will do to me physically, I am thoroughly enjoying the experience. Just today, my daughter and I toured a school in the pouring rain. We would definitely have preferred a sunny day, but we still had a great visit. The school impressed both of us, but even better was the fun we had with each other. We took a train there and back, navigated the local bus system, and even found our way to an Ethiopian restaurant (that my daughter wanted to try) near our hotel. We are both exhausted, and we are getting up early for another visit and tour tomorrow, but we are being good to each other and appreciating the experience. In fact, the trek from our hotel to the train station this morning took us across the campus of a college she had not been considering, but tonight she added it to the list because she was so impressed by it. Our final trip in early August will require me to do a lot of driving (since we will be hitting 4 different states), and that makes me nervous because I know how draining the car travel will be. Yet, knowing that the two of us survived our wacky experiences today, I firmly believe that we can make that last trip work, especially if we are conscious of being kind to one another.

These interactions with my daughter are the thing that makes me the most frustrated about how travel tires me and lowers me ability to stay healthy. She is amazing, and I love spending time with her. I just wish the toll for these trips was not so steep for me. That being said, I would not trade these opportunities for anything. More than anything, I need to step back and recognize how choosing to take these trips does have repercussions. And, I need to remember the importance of this time with my daughter when my health, sinuses, and sleepiness continue to spiral on me over the next few months. I also know that I must be more attentive to taking care of myself to minimize as much as possible the negative impact of these college visits. What I must avoid, though, is letting my compromised health steer me into short-changing my wife, my daughter, or myself in our daily lives.

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Filed under Balance, Driving, Exhaustion, Family, Frustration, Gratitude, Humility, Illness, Insights, Joy, Love, Narcolepsy, Parenting, Scheduling, Sinuses, Stress, Travel, 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

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

Magical Madness

The hour is late. We just got home from the set strike from my daughter’s play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days of half doses, I was slow to rise this morning. I eventually got up and let my wife and daughter sleep. They were both wiped out after the stress and the exultation of yesterday’s performance. I played a little on the Wii, did the crossword, and got a couple of things together for my MOONS-MN gathering. Then, when my wife did wake up, we had our weekly “talk time.”

I truly enjoy our weekly ritual, but today was extra special because we basically talk about how much we both enjoyed seeing our daughter perform. Soon, though, I needed to get ready for MOONS. I got to the MOONS meeting early because we had to use a different room this time. Park Nicollet Methodist Hospital was doing maintenance work in our usual room. The new spot was tough to find. I did try to put up some signs, but then stood near the entrance to the hospital to make sure people knew where to go. I also wound up going up and down the stairs repeatedly because our usual meeting room is down one floor. Thankfully, I spotted most folks and got them to the room. The afternoon was a blast because we had 11 people there simply sharing their stories and chatting about life with narcolepsy. One of the best things was the age range. We spanned from 21 up to 80. I have high hopes for the direction that MOONS continues to take.

After the meeting broke up, I had to hop back in my car to get home. Traffic was rotten, so I got home at 5:05. Fifteen minutes later we were in the car heading for my daughter’s show. My wife and I helped clean the floor before the performance because there was still popcorn crumbs in many spots. Then we did other odd jobs. The performance was even better tonight, and our daughter was radiant yet again. I am thrilled that this was such a good experience for her. Finally, our daughter got to hang out with her friends on the cast, while my wife and I helped get everything in order.

Although it is late, and I will definitely pay for the energy I exerted today, everything was worth it. The time with my wife and the MOONS meeting would have made for an awesome day if only one had happened. But the fact that both took place today, AND I got to see my daughter light up the stage yet again, makes this a day to remember. Crazy and chaotic though it was, the day was glorious.

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Filed under Blessings, Cleaning, Excitement, Exhaustion, Family, Friends, Gratitude, Honesty, Joy, Love, MOONS, Narcolepsy, Parenting, Relationships