Diagnosis: Transverse Myelitis
California, United States
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 like something out of the Abu Ghraib playbook, 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, even the presence of my mother-in-law living down the hall. I withdrew into a comforting solitude, Ann let it all out, and these two opposite responses led to many long, painful late-night airing out sessions. There’s a great Tammy Wynette/George Jones country song called “Two-Story House,” about a fractured couple reduced to living on separate floors, because “she has her story and he has his…” My wife and I did just that for two years – lived apart in the same house.
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 got TM. Plus, while I was, early on, only thinking 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. It left a few scars, but I’m happy to report, we have returned to living on the same story.
Actor Chill Mitchell, a C-4 quad currently co-starring on “NCIS: New Orleans,” said it took him a lot of prayer and meditation until he got to the point where, quote, “I can now focus on the promise and stop focusing on the pain.” The truth is, twenty years in, I rarely think about the emotional pain I once felt I was drowning in. There are many parts of my old life that will never return, kind of like that beautiful girl in high school who never gave you a second look. She is not going to suddenly appear and embrace you madly, like a scene out of a Tom Hanks rom-com. Beside the fact that my wife of now 49 years would probably object, it ain’t gonna happen anyway. It’s gone. Next!
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 TM 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 nor more happy than lottery winners.”
The way I see it, neither are survivors of TM.
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