Thanks for Your Concern

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Since my last post, I've received some heartfelt and deeply appreciated expressions of concern from several readers, both in the comments section of that post, and in private e-mails. I'm sorry it's taken me so long to respond, but I've had a bit of a hard time recovering from my recent cataract surgeries. Seems that my body just doesn't take to being poked and prodded these days, the result of my neurologic crap and some endocrine dysfunction that I'm lucky enough to have to deal with on top of it.

Anybody care to trade bodies with me? Please, no need to rush the stage, just line up single file, and take a number...

In my last post, I mentioned thinking about, and planning for, the "end game". I suppose that since such thoughts have been rattling around in my brain pan for a while now, I've forgotten how sensitive the subject can be. As a society, we tend to reflexively pull back from open discussions of death. It doesn’t make much sense, really, when you consider that our ultimate demise is the only thing that every single one of us can be sure of.

The recognition of the reality of my own mortality has gone a long way towards helping me deal with the day-to-day rigors of my disease. That may be counterintuitive, as it may seem that being aware that my incurable disease could very well progress to "unbearable" would fill me with unending dread. To be completely honest, sometimes it does. But more often, the concrete realization that my time is finite, and therefore incredibly precious, makes me determined to make the most of each day, while I am still able.

As I've said before, happiness is not a choice, but a million choices, made each and every day. I could certainly decide to curl up into a ball and not get out of bed, righteously bemoaning my fate, and no one could blame me. But that would be a waste of whatever quality time I have left, be it a single month or fifty years. Instead, I fight the impulse to implode, and mindfully make the decision to get up and make the most of it. That decision is matched by countless others in the course of a day, each one directed at avoiding misery and seeking some measure of contentment.

Today is the only today I'll ever have, and if I choose to spend it in misery, it's a wasted day. I'll never get it back. The same sentiment holds true for every living person, as long as they have not crossed into the "unbearable". Healthy or not, we are all on this earth for a finite number of days, making each of those days infinitely dear. As those days add up to weeks and months and years, the time left only becomes shorter, and thus time is a commodity that becomes more precious with each tick of the clock.

When healthy, it's easy to ignore this reality and nurture the illusion of immortality. Once given a serious diagnosis, though, that illusion crumbles, and it's up to each of us to decide what reality we will build out of those shattered illusions. I decided soon after the onset of my disease to stare this beast straight in the eyes, and every once in a while spit in its face. Some patients choose denial, and if that works for them, great. I felt the urgent need to strip this thing to its bare bones, and to see it for what it is. I have a chronic, progressive neurologic disease. Presently, there is no cure for this disease. I've gone through toxic therapies and unpleasant procedures in an attempt to stop its onslaught. I've put myself before some of the best doctors in the world. I will continue to fight this thing until I have no fight left in me.

The reality, though, is that left unchecked, eventually this son of a bitch will take me to a place that I could very well consider unbearable, and unbearable is a place that I simply will not dwell. I've had quite a ride, and though I'm not anxious to get off, if it becomes clear that the ride will soon end with my lying helpless in bed, unable to move, it will be time to leave the amusement park.

Don't worry, though, I'm not on the verge of heading for the exits, I'm just trying to deal with my disease with clarity and strength of mind. I'm not speaking out of depression, or even desperation, just from a cogent assessment of my situation and an accounting of my eventual options.

There is constant research being done attempting to conquer the disease, and new discoveries are made daily. Recently, my entire diagnosis has been called into question (now there's a teaser for a future post). I'm hopeful that I'll never approach that unpleasant fork in the road, but I'm determined to be prepared if I do.

Woody Allen once said, "More than any other time in history, mankind faces a crossroads. One path leads to despair and utter hopelessness. The other, to total extinction. Let us pray we have the wisdom to choose correctly". Though those words were meant to be sardonic, the chronic progressive patient understands the truth that they hold. The disease takes such sentiments from the realm of abstraction and places them squarely into the world of hard fact. That's neither a good or a bad thing. Like all things in life, it's really just a matter of perception.