Twenty years and counting

Posted by Allen Rucker in Life After Paralysis on October 21, 2016 # Health

(In a couple of weeks I will be “celebrating” my first twenty years of paralysis. At the request of the Transverse Myelitis Association, I wrote this brief reflection of my journey so far. For those who might not know, Transverse Myelitis (TM) is a rare neuroimmune disorder that attacks the spine. My own attack resulted in complete paralysis at the T-10/12 level. Here is how it has affected my life.)

As many times in the last twenty years as I have told this story – it’s become almost a cottage industry for me – it never loses its surreal, punch-in-the-gut impact. Waking from a light nap on a Tuesday afternoon, feeling an explosion of pain around my waist, and then 90 minutes later, paralyzed for life – this was not any reality I’d ever known. For months after, I kept staring out in a daze, like the lyrics from the Talking Heads’ song, “Once In A Life…”:

“And you may find yourself living in a shotgun shack

And you may find yourself in another part of the world…

And you may ask yourself - Well...How did I get here?...”

At first I thought I knew exactly how I got there – I screwed up, big time. Clearly stuff like this doesn’t happen to people for no reason. Nothing happens for no reason, right? I must be paying a heavy fine for some deep, unfathomable transgression. Or maybe I was so obsessed with making it big as a writer in Hollywood that I was willing to ruin my life to get there. Or, as a wry friend noted, maybe I trashed someone in a past life and this was the payback. I kept asking doctors for a reason and they kept replying, impatiently, “Please, you aren’t to blame,” meaning, “Believe it or not, you aren’t the center of the universe, pal. This is as random as it gets.”

I’ve never been quite convinced that I didn’t have something to do with this, but after twenty years, who cares? I cried a river, I gnashed my teeth at the unfairness of it all, I mourned the loss of all the things I could never do again, like throw a baseball in a straight line or a one-year-old in the air, and then I stopped. Or, more precisely, it stopped – the feeling that I was under this cloud of depression and despair that would never lift. It did lift. It took a lot more time than I ever imagined. Patience is the first test in a situation like this.

The transition back to so-called normalcy was tough. As a newly-minted T-10/12 para, I never wanted to be seen in public again or God forbid, start hanging around with other crips. I did not want to be a member of that club (a feeling, by the way, a lot of people with disabilities carry with them, for whatever stupid reason). My seemingly sweet-tempered wife of then 29 years, Ann-Marie, was furious with the whole situation. This bizarre twist of fate opened the flood gates to every problem in our life – big money problems, big dreams crashing and burning, evens the presence of my mother in law living down the hall. I withdrew into a comforting solitude, Ann-Marie let it all out, and these two opposing reactions led to many long, painful late-night airing out sessions.

Years later, when we appeared together on the Montel Williams show, Montel asked Ann-Marie why she just didn’t run away from this horrible situation when it happened. She said that it was probably all the years we had already spent together, that there was a reservoir of affection to offset the estrangement we felt after I became paralyzed. Plus, while I spent my early days thinking only about my own sad fate, she had to think about everything else – kids, schools, income, medical matters, not to mention her aging mother. She didn’t have time to pack up and leave. It left a few scars, but I’m happy to report, we have returned to living in the same story.

I see myself as very lucky. I am surrounded by a loving family. I have no serious chronic pain, just some infuriating neuropathic episodes now and then. I think because I’m forced to sit all day, I’m better at my craft, writing, than ever before. If I had been an oil rigger or tap dancer, well, maybe not so much.

Finally, by now I am pretty well convinced that paralysis doesn’t have a whole hell of a lot to do with how I move forward in the world or how I pursue happiness, whatever that is. To quote one of the leaders of the positive philosophy movement:

“Victims of car crashes are, on the whole, neither less or more happy than lottery winners.”

The way I see it, neither are survivors of TM.

(To learn more about TM, go to the Transverse Myelitis Association website, www.myelitis.org)

© 2016 Allen Rucker

Purchase Allen's book:

The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life