Image by Joe Thorn via Flickr
I've always been a night person; left to my druthers, I'd happily keep the hours of Nosferatu. Back in my working days, having to be dressed and in the office by the ungodly hours of 8:30 AM or 9 AM was monstrously inhumane. My brain didn't start functioning until after noon, and about all I could do in the hours preceding midday was to try my best to simulate the actions of a fully conscious person, walking around like Mr. Spock in that episode of Star Trek where aliens steal his brain.
Later in my career, when I went to work in the music industry, many of my coworkers were of the same ilk, and the production studios where I toiled were generally devoid of human activity before 10 AM. I had no problem working late to get the job done, so long as I wasn't required to show up at the crack of dawn (and my definition of dawn includes the hours between 5 and 10:30 AM). The night was when I was in my element, and this still holds true. Most of my blog posting, photoshopping, and video editing takes place well after the sun has dipped below the horizon. Though this keeps me out of step with most of the rest of the world, it is what it is, I am by nature a denizen of the dark. I even met my wife at 4:30 AM.
Lately, though, the nighttime hours have been troublesome. Not so much the nighttime hours, per se, but the hours after I've gone to bed, when I'm left without the distractions which serve to keep me from focusing on my illness and all the damage it has done. When not under the covers, and surrounded by my toys and other people, I'm usually quite able to keep the wolves of the despair at bay. Through mindful choices and a diligent channeling of my attentions and emotions, the psychological ravages of my multiple sclerosis are held at arms length, and though they are never beyond my consciousness, I refuse them the ability to cloud my minute to minute existence with anguish. I recognize my situation, and determine to live my life the best I can despite of it. Though this works better some days than others, in general I'm able to keep my head well above the water.
Once the lights go down, though, and all is still, it is a far more difficult task to corral the thoughts that conspire to mangle my peace of mind. I've always been an insomniac, as a child I remember lying awake for hours, even as the light of a new day gathered in my bedroom windows. Now, with my wife sleeping gently beside me, the psychological barriers I carefully maintain during the day start to crack, and the thought train gathers a wicked momentum and threatens to break loose from its tracks. The void that is left by the momentary lapse of emotional diligence is quickly filled with the whys and why nots, the what ifs and the if onlys.
With my head on my pillow, the Torment Express picks up steam and careens through the furthest corners of my mind. How did I get this fracking disease and could I have done anything to stop it? Is this retribution for some forgotten sin, or am I a merely the victim of a simple but cruel twist of fate? If I'd made different choices, if I'd only caught that missed train, or had stayed in Boston, or somehow stayed true to my youthful dreams and ambitions, could I somehow have avoided this ghastly withering, this slowly watching myself lose me inch by inch and limb by limb?
Where would I be this very moment had I not taken ill? That career that I'd built so steadily, despite my struggles with selling out and my battles with the twin fears of success and failure, only to have the mountain crumble beneath me as I approached the summit of real triumph, where might that have led me? At the very precipice of the next level, I was pushed to the sidelines and forced to watch as others scrambled over the foundations I had built.
My God, the time I wasted, the days and weeks and months and years when I was healthy and had the world at my feet, but kept myself bound and gagged with fears and insecurities, bad habits and stupidity, with envy and jealousy and pride and conceit, turning the infinite possibilities of each and every glorious day into a self-imposed prison of preconceptions and misguided expectations and the absolute folly of self-righteous suffering. That time so precious, so delicate, so priceless, time that slipped away without my making even the slightest effort to catch it, blind to the approaching maelstrom that crouched waiting, just beyond the bend. All of the irreplaceable people and experiences and moments that I took for granted, which no amount of wishing or hoping or wailing can ever recover. Gone for good, consigned only to that box marked "memories"...
And what of all the treatments I've undergone, and all of the doctors I've seen, every one of which has failed me completely, and some of which have left me worse off than when I began? How much damage have they done that has yet to reveal itself, these powerful poisons that I've taken even whose manufacturers cannot say exactly what they do? Is there some missing piece to my puzzle, some missed clue or overlooked anomaly that might decipher this disease that has left some of the best minds in medicine puzzled? Is it too late to alter the ugly endpoint of this disease, or might I still have a chance, a tiny chance at finding my way through this thing, to the other side?
I toss and turn with the force of the thoughts ricocheting around inside my skull. Finally, I silently scream "enough", and slowly stretch my spastic limbs, force my aching joints into motion, and clumsily stumble and drag myself to the bathroom, not so much due to physical need but just a break the inner cycle. Back in bed I grab my smartphone and read the opinion pieces from tomorrow's New York Times. As insane and volatile as the outside world may be, it's a powder puff compared to what lies within. Finally, eyes heavy, I surrender to sleep.
When tomorrow comes, I'll take inventory of my physical status, strap on my armor, and begin the battle anew. Inner demons back in their cages, I'll do my best to make the most of the day, imposing some measure of contentment upon myself, because really, there's nothing else to do...