(20) ALL MY PRIVACY WAS SHATTERED, ALONG WITH MY CAR AND BACK..

I found my stay in the rehabilitation unit the most depressing experience of my life—not so much because of my paraplegia as because of the insensitivity of much of the staff to basic human needs and attributes.  Although I acquired many self-care skills and techniques there that enable me to live a full and independent life now, I have not forgotten the daily dehumanization that was part of that experience.

KATHIE WITH TEXTBOOK FORT LAUDERDALE 1980

Mrs. Twining was the only one who could make the Stryker frame comfortable.  The morning I woke up from my spinal fusion, my chin and forehead were rubbed raw from resting against the edges of the opening in the frame.  Richard’s morning beard had always done its share of face scraping, but nothing like the torture from the prone half of that Stryker waffle iron.  I begged the nurses to transfer me onto the back half of the frame, but they said, “No, no, doctor’s orders, three hours prone and three hours supine.”  I had an hour to go on that shift, and three months of discomfort to anticipate.

The purpose of the Stryker frame was to keep me immobilized while the repair job on my broken back was mending.  For three months, I couldn’t sit up or lie on my side or curl up fetus-like in a ball.  It was either flat on my stomach on one half of the frame, or flat on my back on the other. When it was time to change sides, they’d screw the two halves of the frame together with me in the middle and swing the whole contraption over.  Made me feel sort of like an omelet.  It also, for the first few days, made me feel compressed, panicky, and claustrophobic, but within a week I was sleeping right through the night turnings.

On the prone half of the Stryker frame there was an open space for my face, through which I ate, read, and wrote letters.  On the supine half there was an open space for my fanny, under which they placed a bedpan when nature came calling all the way to the ninth floor of the hospital.  It was these two face and fanny “windows” that attracted goblins who furtively shifted all the padding away from the edges and waited gleefully to see me squirm.

By the time Mrs. Twining came on duty that first day, I had been flipped, and was lying on my back facing the ceiling.  She propped the long, lean surfboard-shaped prone half of the frame against the wall, added foam rubber and other padding, and increased the width of the opening for my face.  She was to make adjustments to both halves of the frame several times in the weeks to come.  Occasionally other nurses would try their hands at adjusting the padding, but none of them had her wonderful sensitivity to what was comfortable and what was not.

KATHIE ON STRYKER FRAME

I remember Mrs. Twining for other kindnesses too.  She was one of the few members of the hospital staff who would call out “knock, knock” before pushing aside the curtains that separated off my little corner of the huge rehabilitation ward.  After twenty-five years of increasing modesty, all my privacy was shattered along with my car and back.  It wasn’t just doctors, it wasn’t just nurses, it was everybody—the cleaning ladies, the magazine ladies, the drug store ladies the orderlies, all seemed to pass in a continuous flow through my cubicle.  None of them ever said excuse me, or by your leave, they just pushed through the drawn curtains.  I had fantasies that somewhere down in the lobby of the hospital was a special desk manned by a volunteer whose task it was to route all the traffic of the hospital through my curtains.

I particularly loathed the magazine lady.  She was one of those once-a-week, blue-uniformed, my-thing-for-charity volunteers (the hospital angels, or some such thing).  She always arrived at the rehabilitation floor at a particularly inopportune time.  I’d be over the bedpan or a nurse would be bathing me.  Later, when I was off the Stryker frame, I’d be struggling to bathe or dress myself.  And in she’d come.  “Any magazines, dear?”  Every week, every single solitary week, I’d ask her to knock before coming in or not to come in at all—claiming in my desperation that I never, never read magazines.  Every week, every single, solitary week, in she’d come without a pause.  She was tight-lipped, tight-coiffed, prim and proper.  I’ll bet she slept fully dressed and conceived her children immaculately.  But every week she’d push unannounced into cubicles all over the hospital.  Angel of mercy.  Fulfilling her mission.  Spreading joy.

I suppose none of the staff were unfeeling, they were just doing their jobs as efficiently as possible, despite the patients who managed to get in their way.  Once when I was on the bedpan, the cleaning woman came in to scurry around my cubicle.  “Excuse me,” I said, “but I’m using the bedpan right now.  Could you do my unit later or just skip it today?”  “Don’t mind me, dearie,” was her reply.  “I have a daughter full grown, just like you.”  Inwardly I screamed at her, “And do you clean the bathroom when she’s trying to shit?”

Despite the support of Mrs. Twining, I began to feel that I must be wrong, or crazy, or sick, to get embarrassed at the routine invasion of privacy.  Even after I got out of the hospital, I kept wondering if the mature, adjusted thing for a crippled person to do was to leave toilet activities, all the post personal functions, open to the world.  Doesn’t everyone have a daughter grown up, just like me?  When strangers come up to me on the street and ask if I am able to have a baby, it’s hard to believe that I have a right to any privacy at all.  (Because of the roundabout, crab-like way they approach the question, I’m sure that what they’re really burning to ask is, “Can you have sex?”  The great American preoccupation.  (What I would love to reply is that of course we call girls are careful not to get pregnant.)

The rehabilitation unit was a slow one, not a lot of emergencies, not a lot of urgency, just a bunch of people slowly and painfully recovering from their accidents and illness, and “adjusting” to handicaps.  The nurses usually weren’t particularly pressured, and when Mrs. Twining had spare time she’d come to sit and talk with me.  She was the one who’d watch when I tried to wiggle my toes.  Once we both became excited when the toes really did wiggle.  But the doctors knew better.  Just an involuntary spasm.

Mrs. Twining understood a lot.  She didn’t lose her cool or become uptight when I asked her if I’d ever ride a bike again.  I didn’t yet realize that the question was whether or not I’d ever walk again, even move my legs again.  She simply replied that no, I probably wouldn’t, but I’d do other things.

Mrs. Twining also understood the games we played.  One of the male paraplegics, clinging, like me, to a need for some privacy, would pretend to be asleep every morning when she came to give him a suppository.  She would pretend to think that he was asleep too, gently pulling down the sheet just far enough to do what she had to do without disturbing him.  Later he would “wake up” and ask for the bedpan.  Neither ever hinted that he accomplished his functions in any except a natural way, all by himself.

My own games, at least the ones of which I was aware, were less subtle.  They were sort of mind games.  Mrs. Twining never reacted as though they were silly, or strange, or signs of “poor adjustment.”  There was, for example, the “chances are” game.  Ten thousand Americans a year become paralyzed.  Of these, 85% are between the ages of 18 and 25.  I was 25; 25 and four months.  I figured that if I could have gone just another eight months without an accident, I would have beaten the odds and been O.K.  Of the ten thousand, 85% are male.  I’m female.  So all in all, chances were 85 out of 100 that I wasn’t paralyzed.  Right?  But I was.  Funny.

When the toes never did wiggle on demand, there was the toe in the cast game.  I’d watch and Mrs. Twining would watch, and nothing would move.  But I could feel my right big toe moving.  I felt as if the toe were ensconced in a lightweight but tightfitting metal cast.  The cast didn’t move, of course, but inside, my toe was moving.  Mrs. Twining understood my conviction that if we could just get that invisible cast off, everyone would see what was really happening.

One game I never played was the “I’d give anything” game.  That’s something I don’t believe in.  People are always saying they’d give anything for something.  Believe me, it’s not true.  I wouldn’t, for example, give my eyes or my ears to get back the use of my legs.  Just my bankbook, my car, my house, the things that don’t count, the things no self-respecting devil would take in a pact.  And I’m sure the reverse is true.  No blind woman would give up the use of her legs to see, no deaf woman would consign herself to a wheelchair to hear.  Once you have a disability, at least you know what it is, know how to live with it.  Exchanging it for anything else would mean starting all over again.

I developed new mind games after leaving the hospital, games I’ll never be able to share with Mrs. Twining.  There’s the “cure” game, of course.  Suddenly there’s this new miracle medication and they give it to me and zam!  I’m cured!  I place my hands firmly on the arms of my wheelchair.  I rise slowly to my feet.  I take a few tentative steps, when whoosh!  I race to the arms of my love.

Naturally it wouldn’t be like that in real life.  It would be a long slow process.  Lots of therapy.  Maybe after the first six months I’d go into his arms on crutches.  After another six months on a cane.  Then maybe in six more months I’d walk carefully into his arms.  But finally, finally you can bet, I’d run.  I miss that, running into a man’s arms.

Actually, if I remember correctly, Mrs. Twining and I really spent relatively little time discussing me, my toes, my mind games.  Instead we talked a lot about her mentally retarded granddaughter, Lee.  Mrs. Twining seemed to revel in baby-sitting for Lee while her daughter shopped or simply took a break from the demands of raising Lee.  I had been a teacher of mentally retarded children before the automobile accident, and spent a lot of my face-down time on the Stryker frame pursuing my studies in the area.  Asking my advice was one of the nicest things Mrs. Twining did for me.  It made me believe I still had something to offer the world.  It made me grateful that I still had my mind, and experiences and ideas to share.

Mrs. Twining left the hospital a few weeks before I did.  It had become more and more difficult for her to spend time with Lee because of the constantly rotating shifts that are part of a large hospital routine.  Naturally the hospital couldn’t adjust its policy for just one nurse, so Mrs. Twining left for a nursing home job with more regular hours.  The old people in that nursing home have probably never been more comfortable than they are now.  But who, oh who, I wonder, is adjusting the Stryker frames back at the rehab unit?

Published in Rehabilitation Psychology, 1973