Every Exit An Entrance: Three Years on Disability

Image by Dan4th via Flickr

Today is the third anniversary of my leaving work and going on long-term disability. The universe being the lattice of coincidence that it is, today is also the 20st anniversary of the day I started the first job of what would be my career, TV/video/film production. Kinda weird symmetry, but so it goes...

Naturally, the day brings mixed feelings. I think back to January 18^th, 1990 with a fond sense of nostalgia. I was 26 years old, probably a bit late to be starting my first "real" job, but I spent about five years nurturing the delusion that I was going to be either the next Johnny Rotten or Jack Kerouac. I'd loudly and obnoxiously sworn off ever working a real job, but the combination of cruel fate and the hard realities of such little matters as shelter and eating forced my hand. A bizarre set of circumstances (including a missed train and a punch in the eye) landed me in Fort Lauderdale, Florida, pretty much flat busted and sleeping on my mother's couch.

With a degree in film from Boston University in hand, I managed to land a job as Associate Producer of Local Programming at Continental Cablevision of Broward County, the local cable TV outlet, for a salary barely above minimum wage. Even at that paltry sum, I was grossly overpaid, because I didn't know my ass from my elbow about much of anything, much less producing video programming. It was strictly the cachet that a degree from Boston had in South Florida in those days that got me the position.

My first assignment was to cover "Horatio Alger Day" at a local high school that was largely populated by impoverished kids from the wrong side of the tracks, who could do with a bit of inspirational hokum. I was sent out with a camera and an intern who knew even less than I did about the nuts and bolts of video production. I did my best at videotaping the event, and even did an interview with the keynote speaker, the founder of the Wendy's hamburger chain, Dave Thomas. When I got back to the studio and reviewed the footage, it quickly became embarrassingly apparent that I had forgotten to white balance the camera, and all of the images I recorded were tinted bizarrely orange, looking a lot more like they were shot on Mars than in Pompano Beach. And thus began my brilliant career.

Fast forward 17 years, to my last day of working at one of New York City's premier video and audio production facilities, as the Director of DVD Production, where I'd played a large part in putting out some of the best-selling music related DVDs in the history of the format. I'd been diagnosed with Primary Progressive MS nearly 4 years earlier, and the fracking disease had whacked away enough of me to make the decision to go on disability not much of a decision at all. Preferring to not engender either sympathy or pity, I composed a parting note to my coworkers that I intended to send out at the very end of the day, and requested that my higher-ups not do anything special to mark my departure.

Much to my chagrin, they ignored my request, and put together a little farewell party for me, complete with cake and champagne. Although I thought I would be mortified at such an event, it turned out to be a nice way to put some psychological punctuation on that chapter of my life. I'll always treasure the experience of having two of my most junior people, part-timers both younger than I was when I first started out, tell me that they didn't think they'd ever have a better boss, because they felt like I truly cared about them. Knowing a little something about my back story, the two gave me a book of photos of New York's punk rock scene in the 1970s. I think there's still a mark on the inside of my lip from where I had to bite it to keep from blubbering.

Well, it's been three years since that day, and I've gone from Director of DVD Production to Wheelchair Kamikaze. On my last day of work, I struggled out of the facility wearing an ankle brace, not even needing a cane. These days I spend much of my time with my ass firmly planted in a wheelchair. Thankfully, it's one that goes fast. I've grown fond of saying, "Go fast, even if your fast is slow".

Though some find the transition from working to disability jarring and traumatic, my experience was anything but. After an initial couple of weeks during which I felt compelled to call the office every day, I quickly adjusted to a life that was increasingly limited physically but was also suddenly filled with the freedom to do what I wanted to do when I wanted to do it.

It seems almost forbidden to admit this, especially since I achieved a fair measure of success in a very competitive, high profile industry, but the truth is that I never really liked working. To be completely honest, in many respects I hated it. The only job I truly enjoyed was that very first one, way back in Florida, when I made no money but spent my days shooting and editing video, writing scripts, wiring up video setups, and getting my hands dirty. As my career progressed, and I experienced "success", I became more of an administrator, and at times I felt like a prisoner, a captive to my own achievements. In the middle of my career, I had a couple of jobs which required me to put on a tie every day, and every morning I silently cursed as I slipped that silk noose around my neck.

My last job, the DVD gig, was much more gratifying, but I think that feeling had its roots more in knowing that I had made it to the major leagues than in the actual day to day work I was doing. It felt a lot better saying I was the "Director of DVD Production" for a music industry giant than it felt actually being it. In 18 years, I'd gone from screwing up "Horatio Alger Day" to directing a department that put out mass-market product that sold hundreds of thousands of copies, but I felt that I had somehow strayed far off my path, and I yearned for the freedom of my younger days, when chasing dreams trumped chasing dollars.

How odd, then, that this insidious, hateful disease has provided me the out I coveted. I've learned a lot about myself these last three years, and some things about others as well. I've gained some insight, and maybe even some wisdom, which I've tried to share, with varying degrees of success. Attempting to save my own ass, I've learned more about MS than about any other subject I've ever studied, and I've tried to communicate that knowledge too, so that other backsides might also be saved.

It's quite possible that all of this insight, knowledge, and learning may very well prove powerless in the face of the creeping paralysis that continues to afflict me, and certainly there must be much more benign ways to achieve self-awareness. But, like it or not, this is my lot, and I owe it to myself to make the most of it, and in some way try to imbue the experience with some measure of meaning. Faced with a constant reminder of the preciousness and frailty of existence, it becomes apparent that time should not be wasted.