by Jaehn Clare
Spinal Cord Injury: T12
Age at SCI: 20 years old
Date of SCI: January 19, 1980
Atlanta, GA

Surviving a spinal cord injury — a T-12 incomplete compression fracture, resulting in paraplegia — taught me some noteworthy things.

First — I’m a survivor. A simple thing, but essential to my adaptation to life post-SCI. Knowing that I am a survivor puts me into quite a different relationship with adversity and mortality. Now I feel the truth of Nietzsche’s assertion — “Whatever doesn’t kill you makes you stronger.”

Second — To sing out loud, even if with more enthusiasm than skill. (For me it’s mostly Jimmy Buffet, but Jackson Brown, Rickie Lee Jones, Janis Joplin, and James Taylor will do it, too.)

Other inspiring tidbits include:

Let peace begin with me.
Approach cooking and loving with imagination and abandon.
Analyze capitalism; choose revolution; demand chocolate.
Forgive; floss; exercise — regularly.

Heed Goethe’s advice:

Five years post-SCI, I daydreamed that I might write a play about my experience. Ten years post-injury, I completed an original script as my Master's dissertation project. The play premiered in 1990, in a seven-week tour of England and Scotland. On the eve of the 15th anniversary of my injury, I performed the play in Santa Barbara, California; a performance which later garnered an “Indie” award from the Independent newspaper. The process of writing and performing that play required that I face my fears, examining my injury and journey from the perspective of a storyteller. I was challenged to tell the story so that, as one early respondent noted, “One should care?”

I climb the ladder one step, one rung, one hand at a time. I reach the top. Over my left shoulder, the proscenium stage. To my immediate left, the two-hundred-fifty-seat auditorium. I see Tyler up in the catwalk, coiling a long snake of lighting cable. In my head, I hear the words "Good-bye, Tyler."

This is bad! I'm falling; I'm going to hit the fl ---

OW!

I lie supine. Immobile. Ambiguous. Surrounded by vast expanses of dim, white clinical odors. I sleep; I sleep — a lot. [ Suddenly fearful. ] Aaah! I'm awake. I'm not dreaming; not falling. I'm awake, I'm okay, I'm awake, I'm okay — okay, okay.

It took literally years, but eventually I was okay — I am okay. "Belle’s on Wheels" — a semi-true story, mixing fact and fiction — helped shape my journey.

There is that immediate vulnerability post-injury — hurt, angry, scared, that broken place: “How the hell am I gonna do this?” From there to here. Here: a whole human life — working, loving, living — one day at a time.

When you live inside a body labeled “disabled” you are defined as “Other”-than-human. It’s not something people do on purpose — it just happens. This friend of mine says to me:

“I want to invite you to dinner, but I can’t.”
“Why not?”
“Well, there are stairs up to my house.”
“So? I’ll go up the stairs.”
“But — you’re disabled!”
“So? Will you help me?”
“Well, yeah.”
“Great. When‘s dinner?”

I watch her face change as she tries to wrap her imagination around the image of me getting up a flight of stairs. She’s having trouble envisioning exactly how I’ll do it.

The writing began years before, during Recovery and Rehabilitation, with journaling; the first of several practices that alter my way of living. Others — reading, swimming, playfulness — also become part of “R and R.” Among other things, I am required by my psychologist to examine how I allow other people’s perceptions of me to shape my self-image. We talk about Fear — a lot. She shoves me right into the clutches of that cultural stigma associated with being “crippled.”

Recovery: the act or process of recovering. Recover: regain possession, use, control of; secure restitution or compensation; bring or come back to life, consciousness, health; retrieve, make up for, get over, cease to feel the effects of, make one's way back to … Rehabilitate: restore normal capacities of disabled person, criminal, etc., by treatment or training; re-establish good reputation of, regain esteem for …

I conscientiously journal on my emotional roller-coaster, noting my feelings and responses to people during daily life; the way I perceive other people’s responses to me when I am doing the most mundane things like grocery shopping. Snatches of grassroots wit and wisdom — spiritual graffiti. Cultivating the habit of journaling pages and pages years before I ever hear about or see a copy of The Artist’s Way by Julia Cameron or Natalie Goldberg’s Writing Down the Bones, both of which influence my writing practice years later.
Page upon page, in more than 35 individual journals. I continue the practice, though not quite daily Morning Pages; sometimes it’s afternoon, sometimes it’s not pages — just little notes.

I also still practice a little script I learned from that same therapist: "I refuse to be defeated by _____________.” And one fills in the blank. Fear. Apathy. Frustration. Others’ narrow-mindedness. Lack of — anything. Money, self-esteem, energy. Some days it's simpler: "I refuse to be defeated." I decide; I’m not willing to fail because I didn’t even try. It strikes me — I am not defeated because I am still willing to try.

The complement to the journal writing is a renewed interest in reading. As a 20-something, in the first couple years of my recovery zone, I am gifted a copy of The Tao of Pooh, by Benjamin Hoff. I lie in the grass literally all day long one Saturday, reading — chortling, giggling, laughing aloud, weeping, sighing. This gentle introduction to the classical Chinese text The Tao Te Ch’ing, and the Taoist principles of the complementary aspects of yin and yang deeply interest me. It provides just the sort of thing I need — a way to engage the effort to understand paradox and opposites.

Returning to my undergraduate studies feeds the need to read, and in completing my theatrical B.A., I also dabble in philosophy and the humanities. I read, work, perform here and there for years; at the second decade post-injury, I write a second play — “Tail Tell Tale”, a mermaid play — at my mother’s urging.

The Invisible Cripple Syndrome is brought sharply into focus at the reception for an art exhibit. We’re all are dressed up, mixing, mingling, being seen. The guests walk around with their little plates balancing on their plastic wine cups. My little plate sits atop my wine cup, tucked between my knees. I patiently wind my way through the crowd. "Excuse me?,” I ask a guest. “Pardon me. Excuse me, could I just sneak past you here?" After three polite attempts, I am entitled to nudge him, just to give him a hint. So, I do — gently. He turns around, sees no one at his eye level, turns back to his conversation, stays right where he is. It takes me a minute to understand — this guy is just literally not seeing me. Suddenly, he turns in my direction, practically tumbling into my lap.

"Oops! Oh, sorry."
"It's okay. It’s only a little red wine."

Then, right in front of me, I see the unexpected — another woman in a wheelchair. I greet her.

"Hello."
"Hi! How ya doin'?"
"Okay. Going slowly."
"Yeah. Me, too — it's a bitch, huh?"
"Yeah. I'm just trying to get to the bathroom."
"Try that way — the crowd's thinner down there."
"Thanks."
"Sure. Remember, after you run over their toes, they move."

Flashing me a broad grin, she wheels off in the direction of the bar, dodging the vertical guests deftly. I feel a small surge of satisfaction — I am not alone. I don't see her for the rest of the evening, but I feel better just knowing she’s here — bumping legs, running over toes. Just knowing that she is somewhere in the room alters the whole event for me. We see each other. The other guests may not acknowledge us, but they can't make us invisible to each other. No one can make me invisible.

I give myself permission to explore my physical-ness as it is, reconfigured post-SCI. Sometimes getting around is tough, and I have injured myself more than once, but I want to be able to go out and about, living in the world, rather than cooped up, “shut-in.” Experimentation taught what I can — and still want — to do. I have basically given up bicycling, which I did love. But I reclaimed swimming for myself. I allow my Self water-play-full-ness, and there comes with it a curious, strangely physical sensation of, “Hey! I’m still in here!”

I can still swim. [ She slips off her wheelchair onto the floor. ] In the water, I let go. I move more readily and independently. I swim as physical therapy — a cardiovascular workout, aerobic conditioning, stamina building. I find much more than just physical strength in the water. It’s a skin thang, too — the sensation of being touched all over my body, simultaneously. Touch deprivation is all-too-often accepted as a fact of life-with-disability. But when the water touches my skin, it reminds me — I need to learn to live in my skin again. Mermaids do! They live in their skins, without shame or embarrassment that they don’t walk. How do I learn to live in such a way?
I get fed up with feeling pissed off all the time, so I make a vow to teach myself to have fun again. I start by enjoying — savoring— the simplest things. Loooong hot bubble baths; something not recommended for those wearing a cast, so I missed out on nine months of heavenly hot water. I’m still making up for lost bubble-time! And in honoring the vow to re-learn fun, I sometimes sang to myself in the bathtub. Oddly, it was learning to sing Jimmy Buffet out loud that conjured up the solution to my early existential crisis:

“I’d rather die while I’m living than live while I’m dead.”

The swimming is something I enjoy doing without the wheelchair — and it has restored me to a fundamentally positive sense of my physical self. I also now do Pilates — floor exercises, also without the use of the wheelchair. Even after 23 plus years, it’s still a daily choice to feel good about my body. This body, the one I live in now.

A colleague once asked, “Do you consider yourself an artist, a woman artist, or a disabled artist?" My immediate response is, "Which day? What time?" I am a theatre artist; woman; person with a disability. None of these qualities encompasses the sum of my being; yet each expresses something true about me. And Survivor; I didn’t know that prior to my injury. I do now; I value that. I’m not saying I would have chosen spinal cord injury as a path to personal growth, but the depth it has brought to my life is undeniable. After all the pondering, praying, reading, therapy, weeping, whining, blah-blah-blah — one day I bite into a strawberry, and I get it: Utter certainty that this Life is no accident. My injury may have been an accident — but that strawberry is no accident! And I believe that living is something I can do from the seat of a wheelchair.

I wasn’t born a mermaid. I evolved. It was a dramatic moment, not quite a fall from grace, but a fall nonetheless. But then, that’s another story. This is a tale of a different sort, a transformative tale — transformation not of the outside-in, but of the inside-out.

© 2004 Jaehn Clare

Jaehn Clare lives in Atlanta, Georgia, with her partner Earl Daniels, his teenage daughter, two dogs and a cat. She is employed part-time as the Arts Outreach Coordinator at VSA arts of Georgia, and she freelances as a solo performer and teaching artist.