Chronic Means Always

Sorry for both the week long absence and the subsequent unloading of my entire brain in an evening (the reason I am posting 3 or 4 times tonight). While meeting other narcoleptics was the best thing that happened at MOONS, I also greatly appreciated Elizabeth Nager's address to the group. While I have been working to recognize the chronic nature of this condition for a few months now, it is vital to have that same information come from an external source as well as my own tiny mind.

The invisible nature of narcolepsy is one of the most insidious aspects of the disease. NO ONE who knows me would guess that I am narcoleptic. One of the biggest reasons is that I am energized by others. I used to describe to colleagues, even on my worst days, that I would feel "fine" while teaching, but as soon as I stopped, it felt like someone pulled the plug - literally. Even as I am conscious of my own condition now, I find myself being surprised when I experience a drop in energy after a great conversation with a friend. My personality naturally belies my condition, but even other narcoleptics experience similar frustrations. The basic problem is that your sleep cycle is completely goofed up. That sounds so innocuous , and yet it is a devastating condition.

Narcoleptics, even when medicated, RARELY sleep well. We are constantly tired. The comparison would be if a person without narcolepsy stayed awake for three days and nights. I doubt that most people would even be able to do that, let alone function by the third day. Yet, that is the reality that virtually every narcoleptic faces. Then, one needs to add to that the possibility of cataplexy (the complete loss of muscle control in a limb or the entire body), sleep paralysis (literally, not being able to move upon waking from sleep), and hynogogic dreams (horrid dreams that ARE real in the sleeping narcoleptic's mind). On top of that, most narcoleptics struggle with short term memory and daily functionality. Yet, the entire condition is simply written off by many people. Families often assume the narcoleptic is lazy. Friends give will intentioned, but futile advice, "get more sleep," "try to balance your work load," and my favorite, "you know, everyone has bad days." It is not that people are cruel, but how could anyone understand what this feel like, or even believe it! I have narcolepsy and regularly must remind myself that my own expectations are ridiculous.

Perhaps those internal standards are the most important reason that I must remember the chronic nature of this condition. I have been a workaholic all my life. Like both of my parents, I have always believed that my duties is to give my all - to my family, to my job, to my commitments. Beyond that, though, I have always know that being "engaged" has allowed me to function, while taking a break usually results in my "laziness" catching up with me. Now of course, I cognitively understand that my extroverted nature allowed me to push well beyond my limits. I also recognize that the "laziness" is NOT my failure - it is my narcolepsy. In many ways I have been blessed. Even as the narcolepsy began to grow in strength, I still managed to push myself to achieve more than should have been possible. Yet, that also set me up for the terrible struggle I constantly wage within myself of late. While I consciously understand that I can no longer teach full-time, or even function alertly for an entire day, my sub-conscious still expects unrealistic outputs. Daily, I berate myself for failing to accomplish litanies of tasks and chores. I struggle to calm myself and remember that those expectations were unrealistic even when my narcolepsy had not manifested itself so openly.

I wish I could simply accept my limits, but old habits just don't die - at all. Daily, my goal remains to accept what the day brings. I am getting better at that, but so many days begin with the same old tape denigrating my efforts to even get out of bed. It is so hard to admit that I am often lucky simply to get out of bed. So many people would see that and immediately write me off as nothing but a slacker. I know that I am FAR from a slacker, but I also know that the images in my head, while impossible to achieve, are firmly entrenched as the ideal. It kills me that I cannot be the husband, dad, teacher, friend, son, brother, or Christian that I want to be. Again, I am well aware that that Michael Main is perhaps the biggest hynogogic dream of all - a nightmare that my brain has created which I never could attain (even if the narcolepsy disappeared tomorrow).

A perfect example of needing to ground myself in the permanence of narcolepsy has been the last few weeks of school. As I have begun the journey of accepting my narcolepsy during this past trimester, I have struggled mightily with my course load. The largest problem has been the toxicity of the course I teach. Film Study was a complete mismatch with my personality, and it undermined the exact thing that makes teaching a good career for me even with my narcolepsy. I am an excellent classroom teacher, but in Film Study I spent 3-4 days each week doing nothing but showing movies in my classroom. Add to that the added exhaustion from simply trying to stay present in the midst of such a difficult situation, and you can soon see how I would be totally shot at the end of each day. As a result I was far behind in my correcting for the course. Thus, as the end of the trimester approached, I knew that the grading process would be tremendously difficult. I have NOT been a good teacher when it comes to helping my students improve their writing. I have also not done a good job of holding them accountable for the less than acceptable work that I received as crunch time arrived. Part of me simply wants to destroy any sense of ego and pride that I have left. Fortunately, another (stronger) part realizes that I have done the best that I could. I also KNOW that my students did learn a tremendous amount about film. They gained knowledge in my course. While the end result is not even close to what my hopes were, I can be at peace with what resulted in the end. But, I still manage to kick myself when I lose sight of that more balanced recognition.

Narcolepsy is tremendously frustrating. It eats at me every day. The fatigue and disappointment gnaw at my core. But, that is NORMAL. Narcolepsy is chronic. It does not go away. I simply hope to enjoy the good days and to weather the bad ones. Being bitter and angry and petty will not change my reality. Of course, those emotions are also a natural part of the process. When they rear their heads, I will work to ride the emotions and then let them pass. It is the only choice I have, IF I want to stay sane that is...