Monthly Archives: July 2008

>Alchemical Allusions

>My students for this next year are reading Paulo Coelho‘s The Alchemist as their summer reading. I just finished re-reading it myself and am deeply struck by how appropriate it is to my own journey. Santiago faces inordinate challenges as he pursues his Personal Legend. At the same time, he is constantly reminded that “all the universe conspires in helping…to achieve it” (Coehlo 22). It is a beautiful paradox and underscores for me the mystery of my condition. I know that narcolepsy is one of the largest burdens I have ever faced, yet without it I doubt that I would have even achieved the mental stability I have of late. It is that balance that is allowing me to be an even better teacher and father and friend.

I also love the idea that there is a Language of the World – one that speaks to us all through omens and the natural world. Santiago sees things everywhere simply by being patient and watching. I know that much of my life has been serendipitous. Often, I am making decisions based on intuition and insight rather than logic and facts. I also know that when I trust those deep emotions, I am rewarded with great joy. Far too often, my logical and analytical mind either gets me into trouble or wraps me in so many knots that the tention is unbearable. Perhaps the best example of all is my narcolepsy. When I am teaching (or passionately engaged in conversation) I am rarely aware of my fatigue, but when I am alone with my thoughts (letting my brain process and re-process everything), my exhaustion can be extreme. Coelho does a remarkable job of vividly capturing the realities of how so many of us lose sight of our Personal Legend. How many times have I worried and wondered about my ability to “teach” because the narcolepsy makes me so tired? Yet, I know (in my heart and soul) that NOTHING fills me up like teaching. It IS my Personal Legend.

Of course, I also feel like I am still on the journey to achieve my Personal Legend. I am a good teacher, but I also know that I can be better. I can’t be perfect, but I can be more aware of my students’ needs. I can also be more focused on how I teach, making tangible progress for each student an achievable goal. One of the keys is to realize my strengths and my weaknesses. Another is to know that I am finite and limited. I can’t do everything (let alone do it well), but I can work toward mastering specific skills with a limited group of students. Returning to our Grade 9 curriculum and working part-time are definitely steps in the proper direction.

Perhaps my favorite thing about The Alchemist, though, is that Santiago – who is so adept at understanding omens – still manages to fail on a regular basis. The idea that we (as individuals, groups, societies) can constantly succeed, or win, or whatever, is such a Western fallacy! The reality is that life is a struggle, and we do fall down, and thankfully we can get up again. In fact we rise even faster when we open ourselves to the love of those around us and particularly to the love of our God. It amazes me that The Alchemist manages to be a deeply spiritual (and religious – in my opinion) book without overtly promoting any faith or offending any faith – please realize that I say that as a Catholic Christian and have no idea if the book offends Jews or Muslims or some other faith. As far as I can tell, it is a book about deeply held beliefs that honors a multitude of traditions and gives a true sense of tolerance.

Like Santiago, I have always been drawn to the idea of omens and signs. I do try to watch the world around me to see what it says. I also feel the power of the desert and the ocean. I have spent more time near the ocean than I have in any desert, but both resonate within my core. My favorite novel, Moby Dick (yes, I am actually that dorky), has an amazing line in Chapter 23 – “It is in landlessness alone resides the highest truth.” I think Melville felt what Coelho felt. We are most alive when we are cast out into the world. What is safe is wonderful, but risk allows us the chance to become truly alive, to find our Personal Legend. Narcolepsy is my desert/ocean in many ways. Talk about being “unshored,” I feel like I am drifting alone much of the time. Yet, within that emptiness, there is power and strength. I can’t be who my logical brain tells me I should be, but I can become who I am supposed to be by trusting my heart and my Personal Legend.

And, I did yoga for a second day in a row – yea, me!

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Filed under Eastern Ideas, Fear, Gratitude, Hope, Insights, Literature, Narcolepsy, Serendipity, Wisdom

>Swell Start

>A day proves nothing, but I need to acknowledge that I managed to do some yoga, exercise a little, work, enjoy my daughter, and even start periodic breathing exercises. Things need to become habitual, but it is a good start. Some of those things took place with a horrid headache. While I am not thrilled that my head hurts, I am pleased that I did not let it derail things.

I performed the yoga this morning, after feeding the cats. I only did the “warm-up,” but I did it! I also could feel it helping. We will see how things move forward, but I am hopeful. I practice Kundalini Yoga (there is an online course which is supposed to be free) which focuses on spine energy and breathing. When I did it regularly in the spring and summer of 2005, it helped me tremendously, especially when I was doing it and receiving acupuncture treatments. I am hopeful I will see some similar results by restarting it (and I am once again seeing an acupuncturist too!). One of the greatest benefits is that Kundalini helps with the endocrine system and balancing the brain hemispherically.

My exercise came in an unexpected way. My daughter asked me a couple of days ago if we could go to the local tennis court and the hit ball a little. She has not shown an interest in tennis before, but I was certainly game. It turns out that she is pretty good, especially for her first day. I ran more than I had planned, but we both had fun. I need to find a pattern for my strengthening exercises too, yet how can I not celebrate having a great afternoon with my daughter. I had considered trying to “bow out” because my headache was so intense before we left, but I had promised her that we would do it. I also know that the temperatures in Saint Paul will only climb over the next few days. If I “had” to do it, I figured today was the best bet. We will see if her interest continues. Still, I must remember that doing physical things with my daughter will certainly help me to build physical strength.

The final element of the day is that I managed to do all of this, while finding time to do a little work and to rest. The challenge remains for me to be “content” with what I accomplish versus frustrated by what I left “undone.” That is where I need to keep using this blog and self talk and my friends and family. All of those things constantly remind me that I am a good person. Opening myself to that will continue to make me whole. I also must remember that one (or two or one hundred) “bad” days don’t mean that I have failed. They are simply less.

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Filed under Balance, Eastern Ideas, Excitement, Exercise, Narcolepsy, Parenting, Wisdom

>Doctor Discretion

>At times I get extremely upset with my medical care and that of narcoleptics in general. While some of that frustration is justified, the reality is that most of my physicians have been outstanding. Honestly, only a handful of doctors in the world have a deep understanding of narcolepsy and its causes. In the last few years, the biggest breakthroughs ever have taken place with the discovery of orexin/hypocretin.

Yet even with all of that, I do think that doctors need to learn more about narcolepsy and other sleep disorders. While narcolepsy seems to only affect 1 person in 2500, there are still a number of undiagnosed narcoleptics out there. Far more unnerving are the many people with sleep apnea who are undiagnosed. The importance of sleep is massive and barely understood. Orexin/hypocretin, which is lacking in narcoleptics, was discovered while researching hunger issues. There also may be connections between narcolepsy and MS, Parkinson’s, sinus issues and ADHD/ADD. The bottom line is that sleep is vital to our mental and physical health, and many people are going undiagnosed and unhelped.

Of course, in many ways, those of us in the U.S. are lucky. A friend in the U.K. wrote a great article for The Guardian. It came out today and details that massive numbers of people in the U.K. are going undiagnosed due to their health systems unwillingness to recognize these conditions. It is sad that so many people are being hurt because of a systemic problem. Of course, one could argue that the U.S. has a similar issue in the way that health insurance companies tend to control what doctors can and cannot do. Still, we don’t seem to have quite the problem that Great Britain does.

I realize that narcolepsy and other sleep conditions are incredibly difficult to diagnose, but so many people are made to feel like hypocondriacs. Because narcolepsy is rare and the primary symptom is Excessive Daytime Sleepiness (a fancy way to say extreme fatigue), most doctors explore a multitude of issues before even considering narcolepsy. Worse, some doctors never explore narcolepsy! Unfortunately, even specialists who are the “experts” in narcolepsy sometimes don’t have much practical experience treating the condition. As a result they (and certainly a vast number of general practicioners) miss some of the signs because they don’t match the “textbook” descriptions of narcolpesy symptoms. And, because we are only now just beginning to understand narcolepsy, the disease is likely far more diverse than anyone suspects.

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Filed under Empathy, Frustration, Healthcare, Hope, Narcolepsy, Support

>Psychiatric Sounding

>I saw my psychiatrist today. I actually love going to see him because he has such a gentle presence. I also like the chance to have a mini-talk therapy session with him. He always reads my therapist’s notes before we meet. It is comforting to know that my care is being coordinated between two people that I trust. I also enjoy watching his brain work when he is pondering the drugs that I am taking and what may or may not be a good direction for my anti-depressants.

Today, though, continued the theme that my therapy session began a week ago – being good to me. The funniest, and most unnerving, moment came when my psychiatrist bascially barked at me to put things down and to do a two minute breathing exercise. I had been saying that I need to demand space in my day for doing yoga and exercise, then he pounced. He made the point that often is it had to find the 40 minutes needed for yoga. Instead, he challenged me to use little windows to just mindfully breathe for two minutes.

He made me do it right then! I sat upright in the chair, put my feet flat on the floor, and inhaled deeply. The long, slow exhale was then followed by a couple shallow breaths. Inhale deeply, exhale slow, let all of the tension sink into the chair. Simply release it. Invariably, I felt one thousand times better in that moment. Doing that 4-5 times a day will make a world of difference.

I acknowledged, and he agreed, that the challenge is now to REMEMBER to do it. That brief exercise, and others like it, need to become habit for me. It won’t solve everything, but it certainly will help. I still have yoga and exercise as goals – making those habitual as well – but finding tiny ways to balance my day will be an even bigger victory. Within all of it though, I must remember that my narcolepsy makes everything tough. I will forget to breathe some days. I won’t have the energy for yoga at times. I will explode despite doing everything “right.” It is the reality of my condition. And, that too is okay.

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Filed under Balance, Blessings, Honesty, Insights, Narcolepsy, Support, Therapy

>Physically Failing

>I wish I knew how to surf. If I did, I could honestly say, “narcolepsy is like riding a big wave – you know you are going to crash eventually, it just depends on how much it will hurt this time.” Sadly, I don’t surf so I have no idea how accurate that statement is. Still, I feel like the wave won BIG time this weekend. I have gotten some stuff done, but I was supposed to be cheering on my ultimate team and playing a few points. Instead, I awoke yesterday with a summer cold in full bloom. My wife and daughter both had it, but there was about a week lag between theirs clearing up and mine. I made the right choice and stayed home, but I hate missing the tournament.

I also know that part of me “getting” sick was trying to do more than I should when I practiced on Wednesday. I am “out of shape” and run down. Now, I can certainly still play ultimate decently even in this condition, but it comes at a price. The longer I live with knowledge of my narcolepsy, the more I realize how “good” I became at pushing myself well beyond my physical limits. I am sure that parts of my other health woes stem from me using up energy that should have gone to my immune system and digestion. Even now, as I have been generally healthier since starting narcolepsy treatment, I can feel my health slip when I do too much. The four weeks of full time teaching in a five week period was a terrible decision, but so is playing ultimate at full speed (or as full as I can go) when I am still recovering from that teaching.

I definitely need to do some thinking during this next week. Is it wise for me to try to practice two days a week right now? I definitely MUST start an exercise routine since my back and knees are not doing well and my weight keeps creeping up now that I am on blood pressure meds. But, are two to three hour intense practices a good decision? Beyond that, does it make sense to try to go to all day tournaments when I can’t honestly function well in my own home for an entire day? The hard part in this is that I LOVE this team I am on. I love spending time with them and I do contribute in tangible ways. I need what my team gives me, but does that outweigh the potential negatives to my physical health? I just don’t know.

I think I need to email my captains to see what they think. I also need to discuss it with my wife. She is incredible at helping me gain perspective. I, sadly, am terrible at limits. I need to block out my day so I have set periods for exercise and yoga. Without those, I shouldn’t be thinking about doing anything physical (or much else for that matter). My endurance is WAY down. Part of that is the narcolepsy, but part of it too is simply atrophying due to not balancing my schedule and activities. I need to be stronger just so I can teach part-time effectively and still be present at home.

Even as I wrote that, it hurts. I know that the right thing is to see if I can still come to some practices, but plan to not play in tournaments. I am trying not to wallow in the idea that ultimate is one more thing that narcolepsy has cost me. I don’t want to “quit,” but I do think it is unrealistic of me to expect that I will be in any kind of condition to play well and consistently for extended periods right now. I just don’t have that level of fitness. AND, I am not disciplined enough to control myself at a practice or tournament. I WILL play when I shouldn’t – I always have. And, as a result, I will make myself ill. I still will have the conversations with people, but I need to be good to me. Hopefully, making a decision like this will also motivate me to create the space for exercise and yoga.

The final rotten thing about this weekend is that I haven’t done much at home either. It is one thing to miss the tournament if I am being productive at home. It is another thing to know that much of the crap looming in my mind is still there, AND I am not having fun cheering on my teammates. But, pushing now will mean prolonged health issues. I just need to keep taking one step at a time. I can’t finish everything at once – ever! There will always be work and there will always be more to do. I need to rest and get healthy. That way, I can exercise wisely and begin to build strength.

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Filed under Anger, Balance, Exercise, Frustration, Honesty, Insights, Narcolepsy, Ultimate

>Dream Day

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Occasionally I manage to realize that life is good. Luckily, I have a wife and daughter who make even my worst days with narcolepsy worth every second. Today definitely was a day worth remembering. Not only did I manage to get somethings done around the house and for my teaching, but also I enjoyed wonderful moments with my wife and my daughter. More than anything, I want to learn how to cherish these moments on hold onto them for days when things are far less wonderful.

The “day” actually started last night. My wife and I had a wonderful evening together and simply got the chance to appreciate one another. When “today” officially started, I just up and didn’t feel too run down from ultimate last night (although I am a tad worried about the extra “congestion” today). I then had a good morning and got some work done. My daughter and I then headed off to a movie.

We saw Mamma Mia – it is fantastic!!!!! But, even better than the movie (better than the ABBA music, even) was the fact that I was spending time with my daughter. We had a great time laughing even before the film started. We both noticed the dearth of men in the theater. I was one of perhaps five men in attendance – I think there were seventy plus people in the theater. My daughter found this hysterical. Once the movie began, she obviously enjoyed it and I found it riotously funny. Seriously, they took ABBA songs and built a story around them – what could be funnier than that!?! Amanda Seyfried and Meryl Streep are incredible, and the entire supporting cast is amazing. I LOVE that Stellan Skarsgard is in the film, and Pierce Brosnan and Colin Firth completely cracked me up. I can’t wait to see it again.

Still, the best moments simply involved my daughter and me. I have a tendency to laugh quite loudly, so one can imagine that I was a tad noisy. My daughter chose to periodically cover my mouth to deaden the noise. Later, she observed that it was good my sister was not there. Her aunt tends to laugh louder and harder than me, so the poor girl would have been even more embarrassed. I also love to watch the entire credits, and my daughter enjoys it too (plus, there was still ABBA music this time). As a result, I got the chance to point out to her that the entire film was dominated by women – director, producer, writer, etc. I love that she can see that since too often film remains horribly over dominated by men.

We then went to a late lunch. That was better than the movie. We got a chance to talk and share. We chatted about the movie, plans for the coming weeks, school, her friends, everything. I pray that she and I can continue to connect. I want her to find her own path in the world, but I also want her to know that I will always love her and support her. I also hope that I can model behaviors that will help her cope with life’s hardships. My wife said something cool the other day. Perhaps part of the reason I have narcolepsy is to slow down enough and find balance enough that I can help my daughter learn how to cope with the curve balls of the human condition. It is an incredibly cool way to look at things, rather than my ongoing fear that I have cursed my daughter with narcolepsy (both having to live with me and passing it to her genetically). Those fears are things I can’t control, but I certainly have a say in how I interact with her and deal with my struggles.

After our lunch, we wandered in a book store for a while and then headed home. She needed to get ready to go to a friend’s house for an overnight. We even stopped for some ice cream on the way home. I managed to get some yard work done and then settled in to relax. She got ready and then headed off with her friend’s family. My daughter is amazing and I feel blessed to have her in my life. I see so much of myself in her, good and bad, but want to see just her – not reflections of me. She has such vest for life. I pray she never loses that. I do worry that she may be narcoleptic. She definitely has some weird health things already, not the least of which is horrific sinuses. If she does wind up testing positive for narcolepsy some day, I hope that she has learned from me good ways to live with it.

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Filed under Balance, Blessings, Family, Gratitude, Love, Movies, Narcolepsy, Parenting

>Therapy Thoughts

>I had a great session of therapy this morning. One of the best moments came when I realized how often I allow the external to dictate my mood. I have known that for years, but the stunning realization was that I rarely, if ever, actively seek to make situations work for me. When things begin to go wrong, I simply push ahead and cope. Rather than stepping back and factoring my own well-being into the equation, I prioritize everything else ahead of myself. In fact, I doubt I even consider what the impact of the situation might eventually be on me.

The “aha” came as my therapist and I were discussing my meltdown in the car a week ago Saturday (my lovely moment in Maple Grove – aka Hell). At any point, I could have stopped my car, gotten out, and let off steam by walking around. I didn’t though. I just kept pushing forward, sinking lower and lower into my frustration. In hindsight, it seems so obvious to take care of myself, but I lose sight of me in those moments (actually, I do that in most moments).

Even more fascinating is that I was already in a desperate place when I left the house on that Saturday. I had had a rotten morning and was late. While I tried to remain calm in the car, I was horribly on edge. Arriving at the meeting to find no one there, certainly added to negative spiral. In all of that, though, I never once thought about doing something for me – other than my ineffective (at that moment) self-talk. What I need to do is find a set of options that I can use when everything starts to crumble, particularly at the outset – rather than during the nervous breakdown in the parking lot of some putrid strip mall, during Sidewalk Spending Spree Special!

I also know that much of my angst and anxiety in those moments comes from trying to control the uncontrollable. The Serenity Prayer definitely needs to become a primary resource in my toolbox. But, the reality is that using a guided mediation or doing yoga for 10-15 minutes or even reading something like Thich Nhat Hanh will help me let go in amazingly tangible ways. I also can make phone calls, but I definitely think that active engagement internally is something that I need to explore. My therapist offered the thought that I might rely on my extroverted nature too much to “help” my mood. I think she is right. Using meditative techniques to provide internal ballast will give me greater strength when things continue to go wrong externally. My Maple Grove moment even provides an example of that. After I finally escaped from the parking lot, I called my wife – the greatest source of support in my life. Hearing her voice bought me tremendous peace…until I realized that the gas option I thought I could use would not work. That might have been the most dangerous moment for me. Things seemed to be getting better, but another disappointment drained every ounce of hope from me.

I know that many dark days remain ahead, but I am intruiged and excited about this new insight. I already wanted to start doing yoga again – I know I need it. Now, though, I have even more incentive (always a good thing with me). I need to restart yoga and regularize my day to practice balance with mediations and breathing exercises. The goal is to find a schedule structure for the day – one that lets me stay on an even keel while helping in the house AND taking care of myself. I believe more than ever that I can get there.

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Filed under Balance, Excitement, Exercise, Healing, Hope, Insights, Narcolepsy, Therapy, Wisdom