MS, the devil in my details

Multiple Sclerosis, The Devil In My Details...

Sometimes, getting what you always wanted isn't all it's cracked up to be.

When I was in my early 20s, I was loudly committed to living a bohemian existence. I was the lead singer of a local punk rock band, and grudgingly worked just enough hours in my part-time "day job" to about cover rent, food, booze, and cigarettes. I kept the hours of Dracula. Most nights would find me playing pool in some divey bar, and I never arose before the crack of noon. As old jazzmen used to say, I lived like I didn't know that there were two 10 o'clocks in one day...

I swore to all who would listen that I would never, never, NEVER join "mainstream" society. I would live my life entirely as part of the subculture, divorced from the world of 9-to-5 jobs, American Pie, and social convention. I vowed I would never capitulate, and that I would be steadfast in following my path, never allowing myself to be enticed by the glittering goodies that conventional society would seductively dangle to get me started down the slippery slope towards normalcy, like a corner dealer offering up a free rock of crack.

My mom would yell that I acted as if the universe owed me a living, and though I reflexively snarled back at her, deep down I knew she was right. I was sure the fates had something special in store for me. I simply would not entertain the thought that I was destined for the drudgery of the everyday. If my being a rock star wasn't in the offing, well then, I'd make it by writing, or through some other as yet unrevealed stroke of providence.

If a fortune teller had told me back then that in 20 years I wouldn't have to work, that I'd follow no schedule but my own, that my words would be read by countless strangers, and that I'd have a beautiful wife and an apartment in a New York City high-rise, I would have been beside myself with joy. Vindication! My dreams would be fulfilled! I would indeed live the life to which I somehow knew I was born.

As it turns out, those predictions did come true, but through twisted circumstances I never could have anticipated.

As time went by, I found no overnight success, and the inevitable realities of adulthood started taking their toll. The band broke up, student loans and other debts came due, and life in the urban underground finally started to lose its grungy appeal.

I took my first step down that dreaded slippery slope.

At the age of 27, I took a job as a video production assistant with a local cable company (I'd somehow earned a degree in film despite my rockstar fantasies). It was the first full-time job I'd ever held. The salary was paltry, but I did well at the job, and soon got promoted. I started dating women who expected more than cheap beer and raw emotion. I allowed myself little luxuries, which grew into bigger luxuries, and soon I just couldn't live without my convertible two-seat sports car and my antique wristwatch collection.

The job at the cable company gave way to a more prominent spot at a marketing firm, and that to a position in the corporate communications department of an international conglomerate. Though the spark of that willful 24-year-old still smoldered within, it wouldn't have recognized the face staring back at me in the mirror. In times of introspection there were always moments of self reproach, but these could be papered over easily enough with the purchase of another 65-year-old watch, or lost in a bottle of good wine. I had wandered far from the path I once thought I was meant to follow, and that path now seemed lost to me forever, the road not taken, the life not lived.

And then came Multiple Sclerosis, a wrecking ball smashing through the edifice of my life, leaving what had once seemed secure a crumbled, smoldering heap. The disease rendered my right arm and leg spastic and weak, and instead of sports cars I now drive a wheelchair. The career that fueled my venture into the mainstream was extinguished, and in place of the income it once provided, there are now monthly deposits courtesy of long-term disability insurance.

Yet, in so many ways, I’ve somehow gotten just what I had wished for all those years ago. My finances are no longer contingent on employment, and indeed, given my present circumstances, they do seem heaven sent. Once again I am a stranger to the morning, and there's no denying that I keep the hours of a novelist (as I sit here writing this at 2:30 AM). My words have reached countless strangers, though not the masses I once imagined, but instead a select audience whose appreciation has humbled me. I am free to live entirely unbound by social convention, whose limitations have been replaced by those imposed by the ravages of a progressive disabling disease and the good common sense of my wife. If I had actually received that thrilling prophecy 20 years ago, it would have been right on the money.

Like a rube wishing on Aladdin's lamp, I've seen my deepest desires fulfilled, but at a diabolical cost. And just like that rube, my most important wish appears to be one too many. It doesn't look like my MS is going to magically disappear any time soon. The devil, my friends, is in the details...

This article was originally published on Marc’s website on 06/02/09 and is being featured on with his permission.

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