Today I wanted to share this amazing post from physician Sandra Shea about losing a temporarily able-bodied status. Originally posted over at the awesome KevinMD.com, she has a powerful reminder to share about how we think about our bodies and about people with physical disabilities like spinal cord injury.
I thought of Peter when I lost my temporarily able-bodied status.
I lost it on vacation. These things happen. Suddenly, one Friday night in Florida, I was no longer temporarily able-bodied. Shouldn’t have been too surprised, I guess.
But I didn’t expect it would involve a chicken.
I should explain.
I’m a medical educator: I have a PhD in experimental psychology/neuroscience, and I teach first-year medical students. In our curriculum, the students work through patient cases that are grouped by organ system. At the end of each case, we have a wrap-up in which we highlight the case’s diagnostic features and answer any student questions. Most of these discussions are faculty-led, but occasionally they’re run by a patient whose history mirrors the case we’re studying. Peter was one of these.
Like the patient in one of the neurological cases, he had fractured his spine in a diving accident. In a matter of seconds, he’d been transformed from a typical teenager to a tetraplegic (someone paralyzed from the shoulders down), although he retained some motion in one arm.
Peter opened his sessions by telling the students that he would answer any questions they had about any aspect of his condition.
“The doors are closed, but your curiosity should be open,” he’d say.
Each year they’d start hesitantly, but eventually move into delicate questions that ranged from how bowel movements were completed to how he participated in sexual activities, and with each question he and they developed a stronger tie. Peter would answer their questions quickly and candidly (even when they asked his opinion of physicians).
Then, one day, a question stopped him cold.
“I was wondering about the terms we see applied to patients with spinal-cord damage,” a student said. “Do you prefer ‘handicapped,’ ‘crippled’ or ‘disabled’? Does it really matter?”
Peter paused, flushed, bit his lip and took a deep breath.
“Yes,” he said. “It does matter. Some of my colleagues prefer the term ‘disabled’ to ‘handicapped,’ but I have no strong preference between those two. I would, however”–he nudged his electric wheelchair forward–”strongly emphasize that I and most of the people I know would like the word ‘crippled’ removed from the language.”
He paused and looked around.
“The word carries demeaning and perhaps hateful connotations. To many, calling someone ‘crippled’ is the same as putting the person in a box, sealing it and tossing it away. The other terms imply a process, not an ending. And you TABs just don’t quite get the difference.”
The students looked at one another; whispers ran through the room.
“Yes, TABs. You’re all TABs,” he said, “except you.” He nodded at a young woman in the front row, her foot encased in a walking cast.
“What do you think a TAB might be?” Peter asked.
We all just looked at him.
“Temporarily able-bodied,” he said.
“If you think about it,” he continued, “being able-bodied might be all that you know. You’ve always gone where you wanted when you wanted and not been slowed by injury or disease. But that doesn’t mean you’ll stay that way. Someday you’ll probably need crutches or a cane, or be in a wheelchair for a little while or maybe for the rest of your life.”
There was a thoughtful silence.
Then one student spoke. “So it’s sort of like the Sphinx’s riddle in Oedipus Rex: ‘What is the creature that walks on four legs in the morning, two legs at noon, and three in the evening?’ The answer is a human being. A human being crawls as a baby, walks at midlife and uses a cane when elderly.”
“I’ve never thought about it that way,” Peter said. “But yes, in a way, that fits.”
A few years later, Peter died after a series of strokes. He was not yet fifty.
I thought of him as I sat in the Key West emergency room, waiting for a pair of crutches and a thigh-to-calf knee brace.
My injury had come about earlier that day, as I was stepping down from some uneven stairs onto the sidewalk. Nearby, a hen and her chicks were foraging. Descendants of the fowl bred here long ago for cockfighting, they were part of the population of chickens that runs loose on the island. The local lore has it that, since Key West is a bird sanctuary, the chickens can’t be harmed.
A skateboarder heading along the sidewalk must have taken that to heart; he ducked around the hen and rolled directly into my path.
Stepping back up the stairs to avoid a collision, I slipped, and therefore landed with all my weight on my turned leg and felt something slide and something tear. The slide was the kneecap dislocating, and the tear was later revealed to be the posterior medial meniscus, the knee’s cartilage “shock absorber.”
Some months from now, after surgery and rehab, I hope to regain my temporarily able-bodied status.
But even as I put away my crutches, I hope I’ll never put away my memories of Peter, his generous spirit, and all of the lessons he taught.
Sandra L. Shea is an associate professor, department of family and community medicine, Southern Illinois University School of Medicine. This piece was originally published in Pulse — voices from the heart of medicine.