Next week will mark five years since I was forced to "retire" due to my illness. It's been almost 9 years since I first received my MS diagnosis (which is now in question). In both cases, the human mind's peculiar perception of time plays its usual tricks; somehow, I feel simultaneously as if both events happened only yesterday, but also a lifetime ago. I suppose both readings are correct, as my healthy, working days do indeed encompass an almost entirely separate life than the one I'm living now, but in a strictly chronologic sense the time I've spent ill represents a relatively small fraction of my life, and the time spent not working an even smaller fraction still.
Throughout the early days of my illness, life really didn't change much, aside from an uptick in doctors’ visits, some new topics to search intensively for on the Internet, and a general sense of confused anxiety. Upon hearing my bad news, friends and family often commented on my stoicism and bravery, but the reality was that there was not much difference in my day-to-day existence in the days soon after my diagnosis. I still went to work each day, went out to dinner with my wife and friends, attended parties and other social events, and continued along as I always had, even as my symptoms gradually continued to worsen. Like the passengers on the Titanic who played soccer with the chunks of ice deposited on the ship's deck by the iceberg it had collided with moments before, I had little inkling of the shattering events that were looming on the horizon. I daresay that had I been given an unvarnished preview of what was to come, I might not have appeared quite so unflappable.
Those days, and all of the fully healthy ones that preceded them, now often seem like the first acts of a play with a heartrending surprise ending. One might think that nine years after my diagnosis, and five years after my disease had grown bad enough to give the insurance companies reason to label me permanently disabled, I'd have reconciled myself to the situation, and would have somehow grown used to my new normal. But no, the truth is that I wake up every day still shocked to discover myself trapped in my unending predicament, living in my own horrid little episode of The Twilight Zone. Yes, I make the best of it, choosing most days not to succumb to the misery that's always within arm's reach, and finding if not joy then at least contentment in much of the minutia of my day-to-day existence. Nonetheless, the reality of my ever encroaching disability means that there is no reconciling myself to any new normal, as my normal is a constantly moving target, leaving little time to mourn one loss before another shouts for my attention. There's really no good way to spin it, the situation sucks, and I guess I've just gotten good at not getting stuck in the suck.
Multiple Sclerosis (or whatever the hell it is I have) is an insidious maelstrom, a tornado that ravages just about every aspect of existence. As the disease progresses it cleaves a life in two, breaking it along a fault line between sick and healthy, between time spent fully functional and time spent fighting off encroaching dysfunction. The daily life I now lead bears so little resemblance to the one I led when healthy that my existence prior to my illness is practically a standalone piece, complete in and of itself, almost entirely divorced from my present reality. The continuing narrative of life has been shattered, and rather than proceeding from chapter to chapter, I've been forced to start an entirely new volume. I can scrutinize my healthy days as if studying a book on history, picking out my foibles and strengths, pinpointing the interconnected peaks and valleys, and can glean wisdom through such examination, but my actual connection to these events has been severed.
At times I look back with a longing so intense that it seems with just a little more effort I might somehow be transported through the years, to be given the opportunity to undo long-ago events whose impact was decidedly negative and by doing so maybe somehow change my fate, but of course this is impossible. The best I can do is use my past to inform my present, as a teaching tool to guide my thoughts and actions away from those that cause me pain and consternation and towards those that offer comfort and contentment. I suppose that's the best anyone can do, sick or healthy, but the fractured nature of my past and present make that past something more easily examined, as it's much more difficult to objectively assess one's life while still caught in its ongoing currents. Illness has extracted me from those currents, allowing me to examine my old body of work at a distance, almost as if it's that of a deceased loved one, a story with a beginning, middle, and end. In so many ways that old existence is indeed dead, and like a ship slipped beneath the waves, at times the fact that it ever existed at all is only identifiable by the random bits left bobbing on the surface after the plunge.
The inner life is also torn asunder by the shock of ever creeping paralysis, forcing introspection and a redefinition of self. When healthy, we are conditioned from an early age to define ourselves by what we do or what we possess, in many ways discouraged from concentrating for too long on who we are at our core, lest that person be at odds with the whims of society and popular culture. The illness, though, once it becomes serious enough, forces us into sequestration, sets us apart from the teeming masses. I often watch with melancholy bemusement as TV commercial after TV commercial hawks products that are utterly useless to me in my current diminished physical state. Shiny cars, exercise machines, athletic wear, item after item dangled as bait to keep the healthy ever striving, but as relevant to my existence as eggnog would be to an octopus.
I have been surprised to discover that there is a certain liberation that comes with disability. Once the necessity to work is removed from the equation, hours previously devoted to the office or worksite are suddenly placed back fully in your possession. Aside from a very fortunate few, and despite their practiced protestations, many people are wage slaves, working not to fulfill some inner passion but to maintain and advance their status quo. As the old saying goes, nobody ever lay on their deathbed and wished they'd spent more time in the office.
Upon my forced retirement, suddenly having all that time to fill was initially intimidating and unsettling, but soon enough proved to provide much opportunity for self discovery and the pursuit of interests and proclivities that had long lain dormant and might have even been forgotten. I was surprised at how quickly the cares of my working life faded away. There was no longer any need to be concerned with the deadlines, budget projections, project management, or the subtle social ballet of dealing with clients, bosses, and underlings that had been staples on my daily agenda. All of that recovered time and the clearing away of enforced responsibilities allowed for the reemergence of passions that had for many years been stifled. Through the odd combination of their unleashing and the emergent reality of my once dreaded reliance on a mobility device, I've been able to cobble together an acceptable quality of life, though keeping it cobbled together gets more challenging with the passage of time and the progression of disease.
When all is said and done we soldier on, not because of an infusion of incredible bravery or superhuman courage, but simply because there is little else we can do. Each dawn brings with it a choice, to collapse under the weight of the disease or to once again muster up the strength to make it through one more day. To the healthy it may seem that choosing the latter is somehow extraordinary, but when actually faced with that decision, choosing to collapse is decidedly unappealing. Finding the fortitude to make another stand, even if you can't stand, declares that day to be something of a victory. I'll kid you not, my disease continues to progress, alarmingly. Eventually, perhaps, the disease will win out, but I'll be damned if I conspire to play a part in its triumph. If and when the burden becomes too much to bear perhaps there will be a different choice to make, but until that day comes I raise a metaphoric glass in a defiant toast to life…