Monthly Archives: August 2008

>Lovely Ladies

>Spending time at the Minnesota State Fair today reminded me that nothing is more wonderful than time with my wife and daughter. They are both incredible. I adore them, even when they are driving me nuts. The coolest thing is that my daughter is truly coming into her own. One of the buildings that we toured was the Eco Adventure. It promotes green products, alternative fuels, recycling, local and organic food. My daughter is the one who wanted to start there. She also was genuinely interested in what she was seeing. My wife also kept finding other things that excited her. We are going to have exterior work done on our house in the next few days and are having James Hardy siding put on. It is actually an eco-friendly product that uses recycled wood fiber and cement. Even cooler, though, is that we got even more ideas at the Eco Building for the things we might do next summer.

After our green ideas started to settle, we headed to the Fine Arts building. We split up, but the building is small enough that we ran into each other at times. I know my wife loves art, but it was glorious to watch my daughter process pieces. She does tons of art at home, and I could see her processing what each piece had in it. We had an amazing discussion after we were all done. All three of us had pieces that we liked and could articulate why. I am so blessed to live with such brilliant women.

Our next stop was the Education building. I thought nothing could top the Fine Arts building, but I was wrong. While a number of Minnesota colleges have booths in the Education building, the surprise was the vast amount of student work from young men and women across Minnesota. Some of it came from my daughter’s school. As we look at the various art pieces, woodworking items, science projects, reports and creative writing pieces, I could see my daughter’s brain spinning with ideas. She has incredible talent in a plethora of areas. Her hunger to create radiated from her as we moved through the building. I have the feeling that some art items and creative pieces may be on their way to next year’s Great Minnesota Get Together.

Perhaps the funniest thing in the entire day, though, was watching both my wife and daughter plan their food menu. Both love to have fun with food. Plus, we bought the coupon book so they could get “deals” at a number of booths. Thus, we purchased food from some new places and both of them relished every new dish. They continued their odyssey later in the day. We came home for a time, and then I stayed. Their return not only involved more food fun, but they also watched the talent show for a second year in a row. Thus, they had tons of stories for me the next day. It was adorable to watch them both explode with laughter when they were describing a particular act – be it good or bad.

Many things in my life are incredible, but nothing surpasses these two amazing women. My wife is truly the best writer and editor I know. She is a rare commodity – a talented editor/writer AND a scientist. As a result she is an indispensable asset for the medical school that employees her. In fact she is moving into a new position and is finally being compensated at a level that reflects her immense talent. My daughter dazzles me daily. She creates gorgeous pieces of art, writes effortless pieces of poetry, teaches herself songs on our keyboard, creates amazing pieces on Garage Band AND loves to play. She reads avidly, and she throws herself into games on her DS and fun activities online. I can’t wait to see where her journey takes her.

Narcolepsy has taken much from me, but I know that without it, I easily could have missed the best things in my life. This condition has forced me to recognize what is truly important to me. It has also slowed me to the point that I am able to appreciate the miracles around me every day. No miracles are most obvious than my stunning wife and my blossoming daughter. I am a lucky man.

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Filed under Blessings, Emotions, Excitement, Family, Gratitude, Heroes, Joy, Love, Marriage, Narcolepsy, Parenting

>Schedule Scrutiny

>Scrutiny! That is the word. Another would be discipline. I am getting better at maintaining loose structure to my time, but I need to do even more. My focus can’t become rigidity. At the same time, I have to be better about protecting my time for relaxation and exercise. I didn’t do that last week because I wanted to help a colleague before school started. Now, though, I need to push myself to use my mornings to strengthen my knees, body and spirit.

I also need to enforce limits. Yesterday, I worked on our financial information. I spent hours when I should have done it in much smaller pieces over a series of days. While the bulk of the work is done, I know that I am more wiped out today as a result of my “determination.” Fortunately, this round of insanity did not cost me the fun I had today with my wife and daughter at the Minnesota State Fair. Still, I got home and did not have anything left to do school work or housework. I have tomorrow, but I must work on enforcing my limits. I should do nothing for more than 2 hours. AND, I should rest for at least an hour after something like that. In fact, I should probably go to bed. Instead, I am going to my Men’s Group.

Going to Men’s Group was great, and my energy surged there. But, if I am serious about maintaining balance, I need to adhere to setting time limits and holding to them. Invariably, the week has gotten away from me. I started this on Sunday, but am finishing it on Thursday. I have managed to do some “scheduling” and help to it. I have also killed myself with correcting a couple of nights. The interesting thing, though, is that I have been more productive in my teaching and my correcting than I have been for years. I don’t necessarily “feel” better, but I am able to stay focused even when I feel horrid.

I have also been good about taking time for myself. I did yoga on Tuesday. I have allowed myself periods of relaxation. I have even used some of my time during the school day for me. I have also used it to do correcting, but even that was a conscious decision, rather than one reached out of some sense of guilt or obligation. Of course, I want to be more disciplined than I have been, but I am trying to remember that this is a journey. One that I have a lifetime to complete. Changing patterns takes time. I am slowly remaking my world, but it will take a lifetime. That’s okay! I need to enjoy the journey, while still opening myself to the lessons I must learn.

My goal for this next week is to be effective in my scheduling of time blocks for at least 3 days and hopefully 4. I will certainly keep folks posted.

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Filed under Balance, Blessings, Frustration, Gratitude, Insights, Men's Group, Narcolepsy, Scheduling, Wisdom

>Fatigue Factors

>While the week was good, it stuns me that my fatigue still catches me off guard. It amazes me that I can be functioning well, but then suddenly wonder why I am getting tired. The weirdest experiences tend to happen right after I teach. My energy level is so high when I am interacting with my colleagues and my students. Within a half hour, though, I crash – sometimes tremendously hard. I regularly work to keep myself in check while working with my students, but my radar is a bit off since I have not “taught” at my school for a year.

Beyond the presence of the fatigue, it makes me laugh that is honestly surprises me. I guess it is a double-edged reality. While I am working to accept that I have a chronic condition, clearly it is still not my base reaction. The fact that I actually ask myself why I’m so tired likely means that I have not fully come to terms with the reality of my disease. At the same time, it does provide me with a pretty good laugh. It only gets less funny when I also forget to take my afternoon meds.

What concerns me is that my lack of awareness could be problematic. My fuse definitely gets shorter as my excessive daytime sleepiness grows. I just don’t want to snap at my classes unfairly, particularly since I am teaching ninth graders. I have told them about my condition, and my colleagues would certainly help mitigate the situation. I just know that when I blow, it is ugly. Scarring fourteen year olds would not help my spirits stay high. The key is awareness; it’s just that my self-knowledge also drops with my energy level.

The last concern I have lingers in the realm of my family. My wife and daughter are so important to me. Without them, my life is empty. The fatigue, though, often forces me to limit my interactions with them. I do manage to protect some time and energy for them, but I wish it was more. I also worry that I will “forget” how fatigued I become, causing me to crash to a level that I won’t have anything for them. I realize that is irrational, but it still makes me anxious.

In the end, it is the reality of my life. Energy is a day-to-day, moment-to-moment situation. Some days unfold without any problems. Others are a nightmare. I know I can’t control that, nor can I do anything when the fatigue strikes. What I can do is accept my situation and cope as best I can. It isn’t much, but it is mine!

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Filed under Balance, Education, Exhaustion, Family, Honesty, Narcolepsy

>Beautiful Beginning

>Since the spring, part of me has anxiously awaited the start of the 2008-2009 school year. Some of my anticipation resulted from the realization that my course load last year was nearly disastrous for me. It also grew from my joy of returning to the ninth grade curriculum at my school (I adore mythology, Shakespeare, justice and the other major themes of the course). But, my greatest level of enthusiasm resulted directly from amazing co-teachers. Both of them are easily among the best 5-10 instructors at our school. Even more importantly, they put students first AND still manage to convey their content.

As we began this week, I tried to keep my expectations realistic. We had never taught together. We have a plethora of material to convey (three hours worth of content every day with only 90 total minutes available). We are dealing with over forty students at a time. Yet, even with those realities, my glee continued to percolate. Although I worked to dampen my own spirits, smiles kept erupting from the core of my being. In fact at least six or seven people commented to me that I seemed to be “better.”

Now, I know that my narcolepsy is the same. I also recognize that I am coping with it better and have accepted my more of my limitations. Still, my team teaching colleagues fill me with joy. Basically, we never had a “successful” day, this past week. Over the past three days, we never got everything done. Regularly, we had multiple items underdeveloped. Worse, Wednesday focused half the class time on technology issues. Sadly, we couldn’t even get half of the students logged onto the network. Yet, I have no option but to define the first three days of class as unmitigated triumphs.

I have enjoyed working with many colleagues over the years, but the only thing I that I can compare to my new team is my team teaching experiences at MITY. My two colleagues are phenomenal. They are brilliant, put students first, love teaching, enjoy laughter, understand how to balance discipline and frivolity, AND drive themselves to get better at their craft. I feel like all three of us are striving to own our biases and agendas. We are also refreshingly honest with one another – praising strengths and challenging weaknesses. Then, we add to this mix the fantastic ninth graders who arrived this week and everything just gets better.

Clearly, we have some super star students, but even those who may have some academic weaknesses seem to be ready to take on the rigorous attitude we are hoping to encourage. A long road lies ahead, but all of us seem ready to travel it together. Plenty of dark days will arise, but we are also trying to build skills that will allow both students and teachers to process those moments productively.

The other incredible issue has been the surges of energy that I have been feeling. I certainly pushed hard this week, but I also found myself have a decent reserve when I would arrive home. The narcolepsy is there, but my new course load feed me in ways that I never had last year. I must continue to work toward a sensible schedule and wise balance, but I also know that my colleagues and students will inspire me to remain healthy and to fulfill my potential. I am also grateful that both of my team teaching partners are already monitoring me to make sure that I keep things in perspective. The joy of this past week could easily lead me to foolishly drive myself into the ground by October. Needless to say, I would like to remain healthy and not miss a day of this school year given the potential that seems to exist within our classroom walls.

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Filed under Balance, Blessings, Education, Excitement, Gratitude, Hope, Insights, Joy, Narcolepsy, Wisdom

>Holiday Hijinks

>In the realm of narcolepsy, folks sometimes consider “medication holidays.” The narcoleptic does not take her or his stimulant for a few days, or even a few weeks. This practice allows the person’s body to readjust, hopefully making the stimulant more effective once the narcoleptic begins taking it again. I decided recently to start using these “breaks” myself. While my stimulant definitely seems to work fine still, I do feel like it is less effective than it has been. Thus, I spent today (Saturday) dragging quite a bit.

So, I am now finishing this post on THURSDAY! Sunday was insane. My medication holiday continued, and I found myself completely washed out. The best way I can describe it is full blown narcolepsy. I would be doing something and suddenly find myself “waking” 45 minutes later! I drifted away doing tons of things. I had NO energy and could not function. While it was humbling to realize that I am totally dependent on my stimulant, I know that it was good to do this. I also clearly see that I can’t do this again until the Education Minnesota break in October (or some weekend when I have NOTHING else happening).

The other funny moment came on Monday morning. Stopping my stimulants for the weekend was a planned break. I also had a week long hiatus from my 1 AM dose of Xyrem. Because my alarm (and my fatigue) conspired against me, I missed that dose for seven days. I finally managed to take it Sunday night into Monday morning. Thus, I awoke on Monday groggy and loopy. Taking my stimulants did have more oomph than they had (and they did get me “focused”), but I also know that getting a full dose of Xyrem after a week of half doses left me stunned and doped up. I did do a decent job at school with our ninth grade orientation, but also found it funny that I got a glimpse of what a hangover might be like.

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Filed under Education, Exhaustion, Insights, Narcolepsy, Wisdom

>Magic Moments

>I have been away too long. I can’t believe that a week has passed since my last post – yikes! I certainly have been feeling the absence. At the same time the past week has been incredible. I have gotten a ton done (technically not enough, but still) and enjoyed time with my wife, with my colleagues and with friends. My daughter is on a trip and I have missed her too. She comes home tomorrow (well, it would actually be today now) and we are excited to see her.

My life has been dominated for the past week with house items and school items. My wife and I learned a LOT about exterior doors and their measurements over the weekend. We are going to have work done on our home and needed to buy the doors so the contractor could install them. Because our current doors actually swing out (and have a door knob in the center of the door making them even weirder) the rough openings are small. In fact we thought for a while they were too small because after measuring them, we could find NO doors that “matched.” It turns out that the “rough opening” on doors is an estimate. We should be fine.

I did get super stressed during the process of shopping – I tend to over react any time we are doing “house things” since (as a guy) I am supposed to handle that stuff. Of course that is crazy. Fortunately, we handled my stress well and actually purchased the doors – all of them. Hooray. All of it kept me from getting school prep done, but it is about finding balance.

School has been the all consuming aspect of the past three days. My team members and I spent much of Monday and Tuesday getting our room in order. I drilled many holes into concrete so we can hang pictures. The room actually looks great. Today, I had an all day department meeting and then another meeting at my daughter’s school tonight. I also have inservices tomorrow (oops, today) and Friday. I am even TEACHING something to my colleagues tomorrow and am not ready. But, in all of this, I am holding up well. I know that I have pushed hard over the past three days, but I also feel like I am respecting my narcolepsy. I also know that I need to slow down tomorrow and Friday. If not, I will be in trouble in terms of my health. Part of what has been carrying me is my overwhelming excitement for the coming school year and the chance to work with these two amazing teachers.

The final piece of the last few days, and the most rewarding, is the chances that I have had to connect to other narcoleptics. Through Facebook, I have been dialoguing with a young potential narcoleptic half a world away. This incredible teen is facing a mountian of school work, disbelieving parents, and a lifetime of sleep issues, yet has managed to research narcolepsy and get into see a sleep specialist. I just hope things work out. Closer to home, I had the chance on Tuesday to connect with some incredible former students who also have narcolepsy. It is amazing to talk face-to-face with other narcoleptics. I know that we will continue to do that, and I have MOONS and the National Narcolepsy Network conference coming soon. While I regularly am forced to remember that I have a long road ahead of me – learning to accept and appreciate my narcolepsy, I love that it do have many places in my life for support. I even got to connect with one of my wonderful summer students before she heads off to college. We did that on Sunday – fortunately after I was much calmer about doors.

A final item before I finally hit the sack – I made an incredible observation the other day. In the coming school year, I prep with my team during period 2 and teach in periods 4, 5, 7 and 8. Periods 3 and 6 (while I will be at school) are MINE. My school is paying me to be there for one prep period and four teaching periods. As a result, I can use those other two periods for me, for yoga, for meditation, for naps (?) and certainly for correcting and work. But, the fact that I am claiming them is HUGE. I hope to work incredibly hard to protect MY time. We will see.

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Filed under Blessings, Education, Emotions, Excitement, Exhaustion, Gratitude, Insights, Marriage, My story, Narcolepsy

>Mindful Meditation

>I still want yoga to become a habit, but I also know that I need other ways to relax myself. My psychiatrist showed me a fantastic breathing exercise that I can do in two to three minutes and certainly some of my yoga exercises can be done for a brief centering routine. Still, I know I need something more substantial. I also realized yesterday that I have it! The Benson-Henry Institute at Massachusetts General Hospital specializes in Mind Body Medicine. A few months ago, I bought 3 of their CDs. While I had listened to parts of them, I had not “used” them until yesterday. While waiting for my massage, I put on my iPod and enjoyed track one of Creating a New “Now” by Ann Webster. It is fantastic and helped me relax muscles that were in terrible knots (the massage ALSO helped).

Even more exciting, though, was that it finally dawned on me that my teaching schedule for this next year has two perfect windows built into it that will allow me to meditate with Dr. Webster’s CD or the others. I can do it DAILY if I want. Best of all, my internal reaction to that insight was joy, rather the guilt I likely would have felt even a year ago. My contract requires me to have a prep and four class periods. These windows are not a part of that. I will certainly choose to use them at times to do work for my school, but the key word there is “choose.” That time is mine, and using it in whatever way is best for me – mentally, physically, emotionally – will be glorious. In the past, I know I would have forbidden myself from even considering using a time period like that for meditation. Now, I am looking forward to doing that. It is in moments like these that I think, “maybe I can overcome my hang ups.” Of course, I know that the journey to do that will only take my lifetime.

Being aware of what is going on within me and living in the present are my two biggest goals for this next school year. By using these windows in my school day wisely (for correcting AND fulfillment), I will make it much more likely that my “schedule” blocks will work and be effective. All of this simply continues to build my enthusiasm for the coming school year. Hooray!

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Filed under Balance, Eastern Ideas, Excitement, Hope, Joy, Narcolepsy, Scheduling, Therapy