Category Archives: Technology

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

>Museum Musings

>I am sitting in the cafe at the Minneapolis Institute of Arts. Correction, I am being paid to sit in the cafe at the Minneapolis Institute of Arts. I am here with the students in my Minnesota Institute for Talent Youth students. My co-teacher and I have brought our students here each year for the past four. Usually, I am pacing the galleries, looking for our students to photograph them, and worrying that I am “not doing enough.” I do periodically take a few minutes stop to look at a piece of art, but so often in the past I have felt like I MUST be the “teacher” while I am here.

I know I am slowly coming to terms with myself and my narcolepsy when my immediate thought this year was, “hey, I can use the time at the MIA to unwind a bit.” Not only that, but also I felt no guilt in that thought. Thus, MITY is paying my to chill this afternoon. Even better, I definitely feel like I am earning that pay. My co-teacher and I spent time on campus and here framing the experience. We are getting the students into a different environment to provide new stimuli to inspire their work. And, quite honestly, whether I am sitting here, or if I were pacing the galleries, I would not be helping my students write. In fact, one could argue that my hover easily could do more harm than good.

Even as I typed that, I realized that one of my students just wandered past. The young women and men that I get to teach a MITY amaze me. Often, they have been treated with ridicule and disdain because their intellects frighten even their teachers. Thus, most of them have no idea how to feel supported, or welcomed, or appreciated. Also, because they tend to “get it,” at least intellectually, the wonderful young women and men do not know how to be kids. By letting them roam, we are giving them the gift of trust and respect. They certainly do not need me to watch their every move, nor do they need one more adult who makes them feel uncomfortable. I have no doubt that the approach which my co-teacher and I take in the classroom (by treating our students as brilliant and thoughtful young adults) is a huge piece of the success we have had over the years. I am grateful that I am beginning to find ways to bring that same attitude to our field trip.

It is just one more way that narcolepsy has proved to be a blessing, rather than a burden. The reality during the previous two trips to the MIA is that I HAD to rest for long periods. I felt guilty doing it – “I can’t let MITY pay me to rest” – but it happened nonetheless. Bottom line, though, is that I will be far more effective tomorrow because I took this time to relax today. So much of managing my narcolepsy is letting go. I tire rapidly and stress increases the energy drain. By being hyperconscious at a museum, I exhaust myself and do a disservice to my students. Thus, I am allowing myself to appreciate the stillness today. Hopefully, I will continue to embrace the gifts and the frustrations that narcolepsy brings me on a daily basis.

On a tangential, but loosely related, note, my Wii experience continues to be productive. I have now found myself on at least two occasions dripping with sweat while grinning and laughing. I am clearly getting exercise (and finding genuine strength building in my legs), but I am also having fun. Both of those are vitally important to me living with my narcolepsy. My physical endurance has fallen precipitously over the past two years. It is the awful reality that time for exercise has remained a distant priority as I have been forced to choose where and when I exert myself. At the same time, I have pulled away from many of the things that do make me laugh. My ultimate team was a major highlight of my life, mostly for the joy and camaraderie that it brought me. Sadly, the declining nature of my physical condition stripped the fun out of ultimate. While part of the pleasure I take from using the Wii is laughing at how stupid my Mii looks at times, I am also spending far more time interacting with my daughter. I had dearly hoped that the Wii would be a bonding element for our little family. Things are definitely developing that way. Finally, even if the exercise and fun were not happening as well as they are, I am overjoyed that I am using the Wii to reconnect with yoga. Primarily the “yoga” material on Wii is poses, but those alone are helping me reconnect to my body in a deeper and more spiritual way.

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>Many MOONS Memories

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

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

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

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

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>Wrung out, but Writing

>I don’t have much energy because it is late, but I have felt the need to write for days. I am stunned how often life’s whirlwind can suddenly shift, leaving me writhing in the dust. Even though last week was significantly more taxing, this week has seemed completely out of my control. A week ago, our teaching team was missing one member the entire week, while our students bombarded us with questions about their research papers. My household was also missing our superstar – my amazing wife. Yet, it is this week that feels more insurmountable. I doubt I will ever truly understand that aspect of myself or narcolepsy. This condition seems to have an unending supply of twists and turns.

Regardless, I have survived another week. I have a mountain of work this weekend – correcting and cleaning being the primary tasks at hand. Still, I am proud of myself for pushing through the challenges that continually crop up along the journey. I have had two intense department meetings this week. Two provided fantastic dialogue, but the underlying issues are enormous and get at the spiritual core of teaching. I also believe that another setback has been dealt in the realm of technology. After two years, numerous discussions, a day long listening session, and a full faculty and staff survey, our Technology Committee seemed ready to make a recommendation about modifying the usage rules for iPods/MP3 players and cell phones during the school day. But, during the chair’s summary of the meeting (with only 10 minutes remaining) a slew of “issues” were raised – things we have discussed ad nauseum over the past two years – that delayed the process yet again. The ultimate irony is that our committee only makes a recommendation. The administrative team will give whatever we do final approval. Hearing about this situation today once again makes me questions whether this school is the right place for me or for my daughter. I hate that, but it also means that I am taking nothing for granted.

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Filed under Confusion, Education, Emotions, Exhaustion, Family, Frustration, Insights, Narcolepsy, Technology, Wisdom

>Running Ragged

>Driving my car today, I wondered how coherent I actually was. I did not doubt my ability to navigate effectively and accurately. My confidence was also high in my driving skills. At the same time, I am painfully aware that I am fuzzy on the exact details of the journey home. Plus, when I finally got here, my phone conversation with my wife is now the vague recollection of an echo. In that bizarre balance that seems to becoming my norm more and more frequently, I accomplished many things today, but I also used every ounce of energy that I could muster.

I am pressing myself to the limit. Some of the causes are unavoidable. One of my co-teachers is out on paternity level. Thus, only two of us are present this week to handle the onslaught of questions from our 40+ students in each section. Beyond that, we are working on research papers, which cause the number of student questions to escalate exponentially. I also have been logging long hours at my daughter’s school. Frighteningly enough, I did not go to everything that I was supposed to attend (mostly because I did not trust myself behind the wheel of a car). Yesterday, I was at her school for three hours to help run a TechParent night. Today, my efforts aided in the second session of Poetry Club. Both things were cool, but they also drained me.

Beyond that, though, I have gotten much less sleep recently. I am forcing myself to milk my day for every spare moment. All of the priorities are “vital,” both in reality and in my delusional mind, but they are taking their toll. As always, the thing that suffers most is my well-being. It also does not help that my wife is out of town. I always feel more desperate when that is the case.

I did have one moment today that was a “favor” for a friend, but was actually much more for me. A colleague teaches a class on loss. Most of their work centers on the loss of a close friend or family member, or a beloved pet. Still, the instructor has invited my in the past two years, because she understands that I too live with loss. When I spoke last year, I had just discovered Facebook and MySpace. I had also just start this blog. Thus, it was amazing to talk about my disease today. Even though I know the journey gets longer every day, I loved sharing my experiences because I do believe that narcolepsy (as much as I hate it) has saved my life. It has forced me to focus on myself and my true priorities.

I am handling my current exhaustion well. I am well-aware that I am functioning at half-speed at best, but I am more comfortable with that than ever. I know that many of my days are filled with mediocrity, yet that is far superior to one decent day followed by a month or two of misery. At least I can help students in limited ways, rather than being stuck at home. If that day does arrive, though, perhaps some of my friends at Narcolepsy Network will have worked out a cool way for me to still connect to other PWNs around the world. Okay, I must sleep before I fritter away another three hours.

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>Stunning Start

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

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

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

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

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

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

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