If you go to a wheelchair tennis tournament, you’ll see us competing on the courts. When we’re not playing, you’ll likely see us engaged in animated conversations, often breaking out in a cacophony of laughter. But if you dig deep enough, you’ll find the scar tissue of a traumatic moment, a moment when each of us faced the inevitable reckoning with a body seemingly lost to us. You can’t prepare for the reckoning’s coming. When it does come, it hits you with such brutal force that you can hardly breathe. And yet somehow we survive to laugh again. Here’s the next excerpt from my book.
Wichita’s “The Air Capital Classic”
“It’s unlikely you’ll ever walk again.” What Dr. Silbert said wasn’t registering with me. What?
“Wait. Say that again? I must not have heard you right, doctor,” I said in a whisper.
It was mid-September, 1980, and I was sitting in a wheelchair in my room at Hook Rehabilitation Center in Indianapolis when those gut-wrenching words collided with my ears.
I had survived the summer of torture in Bloomington Hospital’s ICU. I was breathing on my own. Shallow breaths. But still, they were my own. They took the feeding tube out and I ate, with great difficulty, some sort of baby-food-like slop. I could talk, but only a little bit now and then, and only in whispered tones. Trying to coordinate my breath, jaw, tongue and lips to be able to speak was a gargantuan task. I had some movement in my shoulders and upper arms, traces in my forearms and hands. Same for my trunk. And if you stared hard and long enough, you could see my quadriceps flinch occasionally. That was it. There was nothing more they could do for me in Bloomington. It was time for rehabilitation. To rehabilitate is to restore. To what, though?
There were two ways to take Dr. Silbert’s words. One was, “Don’t get your hopes up. Rehabilitation doesn’t mean we’ll get you back to where you were before you contracted Guillain-Barré Syndrome.” The other way was, “I’m saying this so that you can prove me wrong.” It was probably a bit of both. In any event, I didn’t have much time to dwell on the possible interpretations. As soon as I was admitted, the Hook staff let me know in no uncertain terms that I was in rehab boot camp. It went something like this: “You’re not in a hospital anymore, so get that out of your head, pronto. No more nursing gowns. You’re going to wear real clothes. You’re going to do as much as you can for yourself as soon as you can. You got that?” “Sir, yes, sir!” “I can’t hear you!” Uhh . . . that’s because I can hardly talk? “What’s that? Huh, you pathetic hospital junky. Now drop down and give my fifty!” Oh, shit.
The morning after I was admitted I was on the mats in the physical therapy room. To arrive at a baseline, the physical therapist carefully measured the weakness in every part of my body. She used some sort of numbered scale, but she could’ve saved time by just writing, “pathetically weak.” From there, I was off to the occupational therapy room, where I would learn once again how to take care of myself, from showering to dressing. After a break, they took me to speech therapy where I would learn to talk again. This would be my weekly regimen for the next five months. Training to be a Navy Seal? Hmmm . . .
“Tonight you’re going to feed yourself,” the occupational therapist told me. She helped me sit in the wheelchair, strapped me in so I wouldn’t fall, and wheeled me over to the table in my room. She then brought in a metal contraption that she secured to the right side of my chair. It was designed to allow people with very limited arm strength to feed themselves. She placed my right arm on the contraption’s arm rest, taped a spoon to my hand, and via a number of inter-connected rods I could swivel my hand to my mouth. Pretty cool!
She then placed a round sticky mat on the table and put a plate of food on it: squishy broccoli, some sort of pureed mystery meat, and mashed potatoes. My severely weak swallowing mechanism couldn’t handle anything else. “Have at it, Enrique!” She left the room. It was just me and the food. I was hungry after all the day’s therapy.
Using what little shoulder strength I had, I managed to get the spoon to the plate and scoop up some mashed potatoes. With a few more shoulder movements, I launched the spoon to my mouth and fed myself for the first time in six months. I was deliriously happy. I went for another scoop, this time the meat. Successful! Yes!
Then something happened with the contraption. As hard as I tried, I couldn’t maneuver my hand to the plate. I tried over and over again. No luck. I looked for the call button to get help, but it was sitting beyond my reach on the bed. I looked out at the hallway hoping someone would come in and check on me. No one, not even a passing visitor.
I was alone. There was my food, just inches away from me, and I couldn’t get to it. I couldn’t do something as basic yet vital for a human to live: eat. Just over six months ago, I never would’ve thought twice about being able to put food in my mouth.
It hit me so hard that I could barely breathe. This thing, this fucking syndrome, took my body away from me. I was a shell of what I used to be. All because I had the goddam flu. Who was I kidding? The doctor was right. I would never walk again, let alone run again. My hands, just skin and bones, would no longer be able to do the simplest things in life, like buttoning my shirt. Why? Why me? What did I do wrong? What horrible sin did I commit that warranted such a brutally harsh punishment, condemning me to life as a quadriplegic?
Until that point I was consumed with staying alive in the ICU, and then transitioning to the challenges of rehabilitation. That evening, alone, and unable to feed myself, I had finally confronted the reckoning that had been awaiting me. I wept uncontrollably. Wept for the loss of a life I otherwise would have had as an able-bodied person.