Category Archives: Honesty

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

Whirlwind Week

It is Thursday evening, and my week feels like it has flown by. Monday, we had no students at school, but needed to be there for an in-service and department meetings. The in-service was amazing. Uncommon Seminars came to lead us in activities designed to help us in our communications with each other. Eventually, our school is hoping to develop a system of teacher, staff, and student support that would resemble the house systems at other schools. To do that, though, our faculty and staff need to learn how to dialogue far more honestly with each other. The folks from Uncommon Seminars helped us take the first steps on that path (and we had a blast doing it). Then, we all got to go to three hours of intense department meetings. Needless to say, I was exhausted by the end of the day, but I still needed to get my daughter home from her school, and I need to get my MacBook Pro into the Genius Bar. Tuesday and Wednesday were crazy because we are beginning research essays on human rights topics. So, between bombarding our students with information and trying to help fourteen and fifteen year old students sort through horrific global issues, I found myself leaving school both days with little to no energy. But, neither day ended with the close of school. On Tuesday, my parents, my wife, and I attended our daughter’s band performance with the combined advanced band and jazz band. Students from various grade schools come together each year to rehearse for weeks to perform this concert. It was great, and I love that my parents got to see her perform, but my brain was turning to mush before we ever got to the concert. Then, on Wednesday evening, all of us had dinner together. The food was fantastic (we ate at The Happy Gnome in Saint Paul), but again, after repeated full days, a three hour dinner with my family does not leave me much room for recovery. Today, I had to get to school far earlier than normal because I was assisting with the young men’s retreat for our eleventh graders. The event was outstanding, but it was another full day. Plus, I had to grade students making up presentations when I got back to school after the retreat. At one level, I am thrilled that tomorrow is Friday, but I also find myself shocked that I still have one more day to go before the week ends. I will get through tomorrow; I just do not know where I will find the energy to do it.

Making things even tougher are a number of sad (and infuriating) pieces of news in my life. Topping the list, my father-in-law is in the hospital again. He has been battling a number of medical issues for years, with the worst three being sleep apnea, type II diabetes, and Parkinson’s disease. But recently, things have gotten worse,  and he is having problems with strange infections that are requiring hospitalization. Beyond that, three different colleagues at work have gotten serious medical things happening. One woman is being placed on extreme bed rest for her pregnancy. Everything should be fine, but still, for a woman to be on bed rest at 31 weeks is a tough situation. Then, another female colleague is having a hysterectomy. And, a third colleague is facing a spinal tumor that is most likely not cancerous, but may eventual confine her to a wheelchair. Far down the scale of serious (yet still frustrating), a friend at work who I am hoping to teach with again is having ridiculous pressure put on her to rush some significant life choices. And, I just learned through the REM Runner blog that the Supreme Court has agreed to hear a case on “ministerial exception” involving a Lutheran school that fired a teacher with narcolepsy in 2005. The school is asking the Supreme Court to rule on whether the “ministerial exception” applies to a teacher who the school has designated a “minister.” The ruling is important because if the “ministerial exception” does apply that teacher cannot sue the school under the Americans with Disabilities Act. Although I feel quite safe in my current situation, the case hits far too close to home. Anyone interested should definitely head over to REM Runner (because she provides far better clarity to the case than I could ever hope to do).

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Filed under Confusion, Education, Emotions, Empathy, Exhaustion, Family, Friends, Frustration, Gratitude, Honesty, Illness, Narcolepsy

Family Fun

My parents are in town, so my wife, my daughter, my parents, my sister, my daughter’s friend, and I all made a trip up to Duluth to see other family members. Technically, we made two trips because everyone except my parents and me headed north on Friday. My parents drove me up Saturday. The weekend has been fun, but as always travel is exhausting for me. I am more than a little worried about the impact of driving up on Saturday, seeing lots of relatives, and then driving home on Sunday at midday. Given my stress level from the past week at my job, my time this weekend might have been “best” spent collapsed on a couch in Saint Paul. Because the intensity level in my classroom will only increase in the coming week, I will no doubt pay for pushing my body on the weekend too. I certainly am feeling far more tired today than I have on many other recent Sundays. And, we still need to get in the car for the trip beck home. I will do my best to stay low key today, but there is much to be done in the house too. It has been great to get away, but I hate that life with narcolepsy makes even a weekend trip overwhelming. The other piece that makes a weekend like this tough is that no one in my family fully “gets it.” My wife does have the best level of understanding, but even she had a list of chores I needed to do before leaving for Duluth on Saturday morning. My complete lack of energy on Friday meant that I needed to work like mad on Saturday before my parents arrived. I did a good job of cleaning, but was sweating profusely by the time I finished. For my parents and my Duluth relatives there are always a lot of questions, which I appreciate because it shows that they all care, but narcolepsy rarely makes “sense” to anyone other than other people who live with the condition. I need to get ready to head home now, and tension levels are rising in the hotel room, so ending this post is definitely in my best interest regardless of how tired I am.

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Filed under Blogging, Cleaning, Driving, Exhaustion, Family, Frustration, Gratitude, Honesty, Narcolepsy, Support

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.

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

Wasted Week

I need to get to bed, but I wanted to write at least one post before life completely sweeps me away again. So, I was on “spring break” for the entire past week. Sadly, I have done little to nothing in just about every area of my life. I still have a ton of things to grade before 3 PM tomorrow, our taxes need to get done, our home office needs organizing, and a thousand other things are rushing through my brain. Somehow, I am less stressed than I have been in the past about all of this, but I also find it frightening that I have tried to rest for a week and have little to show for it. I feel worse today than I did 9 days ago when our trimester ended. My back has been a disaster for the past four days, and I need to manage to go to work tomorrow on top of “finishing” my correcting. Oh well, I will make it all “work,” but I find it insane how much my health (physical and mental) can grossly impact my life. I know that daily stress from my job is causing me to be even more drained, but I hope I can find a counter balance soon. Every day, things seem to fall apart a little more. On one hand, I am surviving it, which means that I am doing alright. But, I also know that all of this is slowly chipping away at my ability to remain calm and stable. Sadly, I have had two major eruptions of anger and rage over the past few months. They have all been at home, but in many ways that is even worse because my wife and daughter are the last people I want to upset. Eventually, this school year will end, and I will find some ways to create more balance. I just hope that I can hold it together and start to find positive ways to cope with my stress, anxiety, and poor health. Clearly, starting to blog again will help, but I also want to start some level of exercise and yoga. Those three things will do more for me and my narcolepsy than any medication could ever hope to do.

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Filed under Anger, Balance, Confusion, Depression, Emotions, Exercise, Exhaustion, Family, Fear, Frustration, Honesty, Marriage, Narcolepsy, Rage