Category Archives: Humility

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.

Advertisements

Leave a comment

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

Leave a comment

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

Confounding Conundrum

I often think that I work in a mad house, but sometimes things are even more infuriating than normal. Over the past three days, I have been aghast at the flippancy with which other educators handle large scale issues, particularly ones that could have major repercussions. Some of my dismay is fueled by the struggles that I have personally had for the past 12-14 months, but another part of it is the unclear nature of the pseudo-collaborative hierarchy (how’s that for an oxymoron) that runs my school. Couple all of that with a chronic illness like narcolepsy, and no wonder I am drained every day.

Although the posts are not here (yet, I hope), I wrote nearly a year ago about how the school had turned my life upside down by pulling the two other teachers on my team to teach a different course with another team. My new team is surviving, and one of my new co-teachers is outstanding. The other, unfortunately, is not, but that might change for next year. Nonetheless, my two former colleagues went to this other team and have had a rougher year than me. Because of various other issues, their course actually increased in enrollment and now needs a second team to teach it. But, no other faculty want to become a part of the course. So, in ways quite similar to my experiences last year, someone from that course approached a teacher on one of the other teams that teaches the same course that I do. That alone was not supposed to happen again. From that initial conversation that teacher’s entire team suddenly thought that they might be moving to the other course, meaning that within a two year period, a grade 12 course might have pulled 5 teachers from a grade 9 course.

Apparently, everything shifted again today, and now none of the teachers on that other team appear to be moving to the other course, but my concern has far more to do with the guidance (or lack thereof) that any of us are receiving when it comes to curriculum decisions. Even for a healthy teacher, the daily grind of this job is tough to endure. For me, though, my narcolepsy often makes it a struggle to even get to work. When insane decisions suddenly rear their heads, I find myself completely derailed. In one way, whatever happens this year has no impact on me – other than ripping the scabs off of my psychological wounds from last year. At the same time, however, I am deeply affected if major changes happen in one of the other teaching teams of the course I teach. If an entirely new team came on board, the nature of our curriculum would necessitate that teachers from other teams spend large chunks of time with the new team to get them on track. The problem is that I cannot afford to expend that energy. I need to save my strength for my own classroom, for my family, and for myself.

Perhaps, that last item is the part that is most troubling to me. I continue to struggle to save anything for me even now, so I cannot imagine how torn I will feel if there is a brand new teaching team that might need my help. The emotions are compounded by the hurt that I still harbor from last year, though. My school never should have allowed both of my co-teachers to leave at the same time. I would argue that it should never happen, regardless of who the remaining teacher is, but having the “anchor” person on a three person team be someone with a chronic illness is downright criminal. I admit that even I minimize the realities of my condition, but the bottom line is that I am a person with a disability. For my school to place me in a situation where I need to bring two other people up to speed on what we are doing each day is grossly unfair to me and to my students. While we have weathered the storm of this year decently in our classroom, my home life, and particularly my family, have paid a huge price for the extra energy that I have expended trying to make things work in my classroom. The worst part is that I raised these issues when I finally learned what was going to happen, and I went in to discuss them during the current school year when it was obvious that things were not working well. I would even be okay with the complete lack of follow-up that has been the reality of my personal situation IF the school seemed to be working to prevent anything like my experience from last year from happening again. Instead, though, I have spent the last 72 hours learning that the lessons of last year were apparently unlearned in less than 365 days. Yippee.

In the end, everything will work out, but each time something like this happens, another question mark is raised in my mind. I know that I am a good teacher and that most students are well-served by my school, but I feel like we continue to move closer and closer to making some catastrophic decisions. Plus, whether it is the stress or my narcolepsy worsening, making it to work gets tougher and tougher every day. I do hope that I can maintain my current part-time level for four more years. After that, who knows. I love teaching and will miss it terribly when I retire, but I also need to consider what are the core priorities in my life. Those things must come first which I fear means that my teaching career will likely not see the dawning of 2020.

1 Comment

Filed under Confusion, Depression, Education, Emotions, Exhaustion, Family, Frustration, Honesty, Humility, Loss, Narcolepsy, Relationships

Travel Tension

>On the whole, today has been great, but as was the case on the way down to Tennessee, narcolepsy did choose some choice moments to rear its ugly head. In an attempt to create a smooth departure this morning, we all packed last night. Ironically, that effort paid off for us (those things usually backfire in some way). We were on the road by 6:25 AM – a significant improvement from a week ago Friday (when our 6 AM departure turned into 8 AM). My wife was on edge as we left, but I knew that she was definitely sick still, and her angst quickly passed.

The problem, though, was that due to my wife’s illness I needed to drive more than I had on the way down. I took my first driving shift right after we entered Kentucky. I managed to get us passed Lexington, which was over 100 miles of our trip. I drove for nearly an hour and a half. Unfortunately, I found myself in heavier traffic toward the end of that time (no doubt due to passing through Lexington). Still, I handled things well, but I could feel some tension building. My wife definitely gets worried as I begin to fade behind the wheel. Still, I was pleased that I drove that far and helped out that much.

Because it was so early, we continued to push on. My wife drove us into Indiana. We finally stopped for lunch at this great little restaurant in Scottsburg (Jeeves & Company). Our lunch was wonderful, and I took my second dose of amphetamine right after we ate. My wife definitely needed me to drive again. I knew that I was already exhausted, even with the stimulant, but felt I had no other choice. Thus, I got behind the wheel and knew that I would be fine in terms of safety. The problem was that driving would take all of my energy. My wife dozed during some of the time, but she woke up as we began approaching Indianapolis. Like Lexington, traffic began to get dicey as we approached the metropolitan area. Finally, a truck cut into the left lane (at 65 mph) when the car in front of me and I were both moving at 80 mph. Needless to say, I was furious. I then drove through the next 30 to 40 miles in rapid, lane-shifting traffic. I wanted to get us around Indianapolis before switching. But, the speed and my bad mood made my wife more and more anxious.

When we finally reached an exit that would allow us to switch, I was attempting to explain my awful mood to my wife. Sadly, the gas station we wanted to reach was not immediately at the exit, AND the bottom of the ramp was incredibly confusing. I did make the correct decision, but had no way to know that at the time. Because every ounce of energy that I had was going into keeping the car on the road safely, I derided myself for the rotten signage. This only upset my wife more. After the mile had almost passed, we were approaching a different interstate and could not see the gas station. Because I was so far gone, I cut my wife off as she was attempting to “help” me. I plead with her to say nothing and to let me figure out how to find the gas station. Seconds later, I spotted it just passed the other interstate, but she also saw it and chose to let me know where it was. That definitely sent me into a tailspin.

I got us to the station, and we snapped at each other about the situation. We soon reconciled, but as I got out right after the initial exchange, I was literally shaking aas I was pumping the gas. I had nothing left from the driving. In fact, I nearly exploded when the pump failed to print my receipt. Fortunately, my wife had already apologized to me. I managed to walk (or stomp) inside and nicely ask for a copy. I then apologized to my wife and again attempted to explain how hard such a situation is for me. It drives me nuts that my energy is so limited in moments like that. I truly did not have the ability to interact with her (or myself) civilly because I needed all of my mental accuity to keep us safe in the car. That is crazy, but it is also reality.

Fortunately, my wife and I are exceptional at sharing, listening, and forgiving. I know that she meant well, and she knows that I truly did not try to upset her. She also appreciates that I did much more of the driving today. She still did the majority, but I did drive for over 3 hours and handled over 200 of our miles. Narcolepsy will certainly continue to be a bane – in my travels, in my marriage, in my life. But, I must simply continue to accept what it gives me and make the best of each day. Gratefully, we got to our hotel by 3 PM and have had a slow evening to gather strength for tomorrow. We are all excited to get home. I hope that tomorrow goes well and that my narcolepsy lets me have enough strength to drive and to be kind even when the roads are tense.

2 Comments

Filed under Anger, Driving, Emotions, Exhaustion, Family, Frustration, Honesty, Humility, Love, Marriage, Narcolepsy, Stupidity, Travel

Sluggish, but Sane

I chose not to push myself at all today. While I desperately want to be more productive, I knew after yesterday that I would be a fool to drive myself today. Thus, I got up slowly and thoroughly enjoyed the long “talk time” with my wife. It amazes me each week how wonderful it is just to spend time in honest conversation with her. I also know that those exchanges are a huge part of why my love for her deepens every day. After we finished, I attempted the crossword and finished the sudoku in the StarTribune. Then, I played some Animal Crossing, which is rapidly becoming my favorite mindless past time.

My wife asked me today how I can enjoy it because there is no “objective” to the game. But, I think that is what I like about it. Before my narcolepsy became intolerable, I enjoyed fishing. What was good about it for me is that I could sit and do nothing, but not get stressed out. Ordinarily, lounging causes me immense amounts of stress because my brain wants me to do things. In fact, it uses quiet times to inundate me with a myriad of unfinished tasks, but fishing WAS something. I could be focused on the process of casting and retrieving, blocking out the normal litany from my mind. Animal Crossing definitely fills a similar role, partly because I spend a decent amount of my time in the game fishing. I will need to be careful of my time with this one, but it is a good way for me to use my downtime in a restful way.

I did manage to help clean our kitchen. I even put away a few of the piles from our dining room table. Hopefully, I will have a bit more energy tomorrow. The most important aspect of the day, though, is that I am at peace with what I did and what I left undone. Much of my stress earlier this week centered on what I have not finished yet for this coming school year. The reality is that I still have time to get things done, and I am a part of an amazing team. We made significant strides on Thursday and Friday. I am willing to guess we will have even more success on this coming Thursday. I need to remember that I have already been more efficient this summer than I have been at any point in my teaching career. I still want to do more, and I will. But, I deserve congratulations for the work I have done thus far. Plus, it will do me no good to make myself sick well before the school year begins. Summer has to be about me regaining energy so I can be effective during the school year. I truly do not know what tomorrow will bring, but I will do my best to get one or two things done, and I will make sure that I continue to take the breaks that my body needs to rebuild my reserves.

Leave a comment

Filed under Balance, Chores, Cleaning, Education, Family, Gratitude, Honesty, Humility, Marriage, Narcolepsy, Relationships

Fading Focus

>Summer is always a curve and a blessing for me. I LOVE that I actually have “free time” because I need it to recover from the frenetic pace of my school year. At the same time, I hate it because I am terrible with unstructured time. I have been doing better this summer, but I have struggled for the last two days. My problem is that I lack the self-discipline (or perhaps the energy) to create a modest schedule of tasks for the day. During the school year, I am forced to create some level of schedule because my work fills specific sections of my day. When summer truly arrives for me, though, I have such open swaths of time that I regularly fail to pre-plan what I will be doing on any given day.

I also get terribly gun shy of planning out specific days. I know that I overestimate my energy and abilities, meaning that if I plan out a series of days, I will likely be “behind” from the moment I set my schedule. At the same time, when I allow myself to “see where the day will take me,” I find myself accomplishing next to nothing. Because so many things are a “top priority,” I am often paralyzed by my own brain. Worse, my inaction causes me to begin berating myself, which makes my more tired, and I become even more inefficient.

As I said, I am getting better at managing these things. In reality, my learning style (concrete random) and my personality type (ENFP) do not lend themselves well to carefully planned out schedules. In fact, they are deadly for me because my “random” nature means that I will eventually fail, and the “concrete” aspect of my brain will condemn me for that failure. Thus, I need broad plans, and I must accept any step towards the completion of those plans as progress. For instance, our finances needed to get up to date. In the past I would have tried to get it completed in one day. Although I did manage to do that from time to time (by locking myself in our office for 8-10 hours), more often, I would get to a semi-acceptable point and then would leave the finances unfinished – possibly missing a bill. This time, I chipped away at the finances over a four day window. I not only got caught up, but I also managed to enter information for my wife, and I figured out some of the stranger issues in our investment numbers. I even got paperwork filed today.

Unfortunately, even successes like that do not completely sink in for me. I consciously know that I did a good job, but I don’t truly feel it. Instead, the hypercritical portion of my brain berates me for taking so long. It also reminds me that the office is still a disaster, and the investment numbers are still not fixed. And, pushing those thoughts away (or should I say hearing them and then dismissing them as irrational) takes tremendous amounts of energy, leaving even more run down. As a result, I then spend a few days, like today and yesterday, wallowing a bit and trying to get into some sort of groove with my daily routine.

The other two challenges of summer tie into that last issue. This time off often results in a different series of events every day. I have clearly learned that I am at my best when I can get into a pattern and am able to follow that every day. Sadly, I am convinced that it will be years until such a thing is possible during the summer for me. My wife’s job, my daughter’s activities, my doctor appointments, and my work issues mean that summer will remain a hodge podge of starts and stops in each and every day. Summer also means a great deal of isolation. While I do get to spend time with my daughter, many of my days involve long stretches of time when I am alone. Although I have come to appreciate some quiet time when I am isolated, the reality is that I am an extreme extrovert. Thus, being by myself drains me. Sometimes, that alone can totally wipe me out. On the other hand, I can be having the worst excessive daytime sleepiness, but come to life as soon as I step in front of a group of people.

As in so many other things, I must be patient as I move forward living with narcolepsy. This condition is insanely bizarre. I can feel almost normal one day and horribly tired the next. Worse, so much of my day (each day) depends on my sleep, yet I have NO control over that. Even when I have been in a great pattern of going to sleep and waking at the same time each day, one thousand and one tiny little things can positively and negatively influence my rest. Thus, I must take a deep breath, do the best I can, and not fret about the highs and lows. I just need to ground myself in the present and stay with each moment.

Leave a comment

Filed under Balance, Confusion, Depression, Exhaustion, Fear, Finances, Frustration, Humility, Illness, Narcolepsy, Scheduling, Wisdom

Groggy Gray Grumpies

>I awoke today feeling like I had been run over by a car. There seems to be no definitive reason for this. I have not slept on any bathroom floors. I took both doses of Xyrem. I laid off exercising excessively for the last two days because I was feeling run down. Why in the world would my body be this sore? Then, I remembered – I tried to DO things this week. By that, I mean I had numerous meetings and worked on financial issues in our house. I also tried to do some housework and even spent quality time with my wife and my daughter. The most unnerving part is that all of that “work” resulted in me being even more wiped out AND the following:

  • House is messier today than it was on Monday
  • Lawn is still not mowed
  • I need to make two phone calls – one to set up yet another meeting
  • Our office is still not cleaned
  • Our finances are not yet up to date
  • Oodles of things need to get done for my job
  • Oodles of things need to get done for MOONS-MN
  • Oodles of things need to get done for our house – window stain, door paint, room touch up, blinds hung
  • My wife is depressed, and more from me would help
  • My daughter needs us to run errands and help packing for an overnight

I often find the hardest thing about narcolepsy is letting go of the shame and guilt that a list like this one can foster. I KNOW that I did a decent job this week, but it scares the hell out of me that my progress during the week resulted in everything getting further behind. I would love to pretend that I will just “work harder,” but that is not possible. In fact, pushing too hard is what got me to this morning when I awoke feeling like I had been run over. It is a strange, sad cycle. And, if I am not careful, I can let it eat me alive. My baseline has always been an all or nothing approach. I throw myself into things, or I completely surrender. Unfortunately, that approach has never worked out super well. And, when it gets right down to it, it won’t in this moment either. I will NOT get that list above done today, tomorrow, next week, or possibly even next year. I also will NOT give up my wife, my daughter, my house, my job, my health, or my sanity.

My favorite insight about life is that it is paradoxical at its core. There is always too much to do, that will never get done, and is always completed. If that makes little sense and complete sense, welcome to the world of paradox. Perhaps it is that one insight that lets my let go on days like today. I will not get all of those things, but eventually they will all get done (even if they don’t). And, obviously, reactions and emotions like mine today are not exclusive to narcolepsy. It exacerbates the severity of my fatigue and my ability to do things, but each person has her or his limitations. Which is my second favorite insight – pain and struggle can never be compared. None of us will ever know what is like to be another person and face her or his challenges. Even if I met another almost 41 year old, male, English teacher, two years into his diagnosis of narcolepsy. While we might have some similar experiences, I could never understand his struggles. Thus, the challenge is to make peace with the good and the bad within our own bodies and minds. At the same time, it sure helps to have others in your life who at least “get it” when it comes to your own struggles. Thanks for reading and thanks for letting me vent a little. It might just help something get done today.

2 Comments

Filed under Balance, Depression, Empathy, Exhaustion, Family, Friends, Frustration, Honesty, Hope, Humility, Insights, Narcolepsy, Relationships, Wisdom