AMERICA'S WAR ON THE DISABLED: 1975-1992:(A History ot the Social Security Disability Reviews of the 1980's)

by Tennise Broeck Morse

SECTION TWO: CHAPTERS THREE AND FOUR

Chapter Three

My mother always said I was stubborn. It sounded like a problem. But in 1975, I found it was an asset. After all, discovering the cause of my medical problems hadn't been easy.

Over the years, whenever I felt ill, all I could say was that I thought I had the flu. It was a dragged-out, cranky, tired, sick feeling that sent me scurrying to doctors, looking for a diagnosis and treatment.

Each doctor I saw eventually assured me I had a one-time condition from which I'd soon recover. In two weeks, or three, or five, I'd be back on my full schedule. But each time it seemed to take me longer to "adjust." I caught whatever was going around the office - a cold or the flu. Everyone else threw it off in a few days or a week, but mine lingered on and on. Sometimes I had a string of colds. They never got better but turned into ear, sinus or throat infections.

Convinced there was an underlying problem, I took to doctor hoping. When the old doctor tired of my complaints, I found a new one. Each doctor gave me a standard physical, tested me for thyroid, and assured me I'd feel just fine if I'd only lose some weight.

I couldn't understand it. I'd always been fat. But most of the time I had more energy than anyone I knew. No one would tell me why fatness should lead to recurring episodes of flu-like sickness, so I continued to look for a more comprehensive explanation.

In early 1975, a friend referred me to Dr. Zimmer in the Bronx. He put me in a major Bronx medical center for tests. I stayed there for a month while unpleasant long-term possibilities were considered (heart disease, lupus, arthritis).

As each test report came back negative, interns came in to give me pep talks about wasting bed space. Just why, they inquired in friendly voices, did I think I might be sick? My answers did little to dispel their skepticism. Soon residents stood around outside my door, gossiping about my doctor("Crazy Charlie")in the hall.

In the midst of it all, a short balding man in a rumpled gray suit came to my bedside. He announced, in an Austrian accent, that he was a psychiatrist. I stared at him open-mouthed, wanting to laugh but afraid my entire future might rely on taking him seriously. After noting some biographical data, he asked me about my sex life. Did I enjoy sleeping with my husband?

"Yes, I do," I replied, "when I'm not too exhausted."

He turned and scribbled a sentence on my chart: "Female patient exhibits no signs of psychological distress."

In the end, his was the only positive report in my file, and the only one which was completely disregarded. Doctors from all fields - specialists, Dr. Zimmer's colleagues, house staff (interns and residents)- came to my bedside to suggest I was emotionally disturbed. "Look," they said patiently, "here are the test results. No heart trouble, no lung trouble, a little low blood pressure, you should lose weight, no arthritis..." They held up the psychiatric report, looked at it briefly, shrugged, returned it to the file. "Well," they said, "We feel it would be best for you to go home and see a mental health professional. If you'd like a referral..."

I'd just started new duties in the Women's Division, and every day my boss called to ask if Dr. Zimmer had found out what was wrong. John visited every day and I hysterically detailed the latest horror story. He shook his head over the absurdities of the hospital bureaucracy, but I was never really certain he understood.

Desperate for answers, I was determined to get to the bottom of what was going on. Armed with the "Patient's Bill of Rights" pamphlet on my bedside table, I insisted we file a complaint with the Hospital Administrator. He came to my bedside, looked at my file, hemmed and hawed, and said perhaps there was a misunderstanding. No one was suggesting I should leave before Dr. Zimmer formally released me. By the way, had a timetable been set on that yet?

After four weeks, Dr. Zimmer announced I had phlebitis. This only confirmed the general hypothesis that I'd been making myself sick by overeatin. But now that someone had explained the connection to me in a way I could understand, I grabbed at the diagnosis gratefully. I'd have to take Coumadin - a powerful blood thinner - and have blood tests three times a week to monitor the drug levels in my body. But at last, my life was organizable again. Now I had an explanation to give the people who required one, a course of treatment to follow. When I came out of the hospital in 1975, I immediately went back to work full-time.

My hospital stay became a tall story, a series of anecdotes, told for the laughs. Somewhere way below the surface, I put away the moment I stared at the little Austrian psychiatrist in dawning horror. I'd grasped, just for an instant, the idea that I could be subjected to such indignities at will, as long as I insisted I was sick.

Question: what is the definition of a psychological attack? Answer: a conversation with a doctor who doesn't know what's wrong with you. And because of my background, I was a sitting duck. The truth of the matter was, I hadn't become an upwardly-mobile, achievement-oriented workaholic by accident. My lifestyle had been made, not born, out of the ruins of a childhood spent with two parents who were mentally ill.

For my father, the marriage that produced me was the result of the sociological concept of downward mobility. The once successful son of a rich family, my father was, at the age of 40, an alcoholic manic-depressive, and out of luck. Enter my mother, a naive twenty-year-old girl whose pretty face concealed the fact that she was schizophrenic.

By the time I was born, six years later, one fact was clear. Smart as my father was, award-winning smart in his youth, my mother was smarter still. Thus, I grew up in a household where the alcoholic manic-depressive was the more stable adult, and the schizophrenic had the upper hand.

Mine was the kind of childhood that makes incredible stories, but after I left home at the age of fifteen I found it was better not to tell them. This kind of background made one suspect in the social climate of the late 1950's and early 1960's. In my late teens I freely talked about my childhood experiences, but I soon learned that - if I wanted to win acceptance in the world of ordinary people -it was better to keep still.

As time went by, silence got easier. No one suspected my origins, as I piled up lifestyle "credentials." High School equivalency diploma, Cum Laude college grad, marriage into a respectable middle-class family, acceptance to an Ivy League college master's program. But then I made my first mistake. Operating from the premise that it's unwise to lie to your doctor, I'd given honest answers when doctors, residents, interns and nurses asked me about my family's medical history. After that, no reputable health professional would take me seriously.

I knew, in the "real" world, many people thought, "Crazy parents, crazy kid." Still, I expected the practitioners of medical science to take a more enlightened view. They did. Doctors based their judgment, not on the psychological argument, but on genetics. Manic-depression ran in the genes it seemed, and alcoholism, and certainly schizophrenia. And intelligence. I was extremely intelligent, intelligent enough to know how one can use intelligence to cover up deep problems and throw others off the track.

Now, as doctor after doctor told me to stop bothering them and look within for the cause of my problem, I finally admitted they were right. I'd wasted their time, risked my marriage and our future, and all because I wouldn't stop stuffing my face.

When it came time to consider making amends to the people I'd harmed, I confessed to my Overeaters Anonymous sponsor that I owed apologies to all my loved ones. By refusing to face my eating problem sooner, I'd made them worry I might be seriously ill.

***************************************************************************

Chapter Four

1976 was a difficult year.

I turned thirty.

I was comparatively thin for the first time in my life, and following a doctor-supervised gradual weight loss plan. Still, I continued to feel ill.

Everyone raved about the new me, but the new me was often to be found in bed. I cut back on my studies, went back to basics. Still, I had to reduce my time at work to 27 hours a week.

John's mother died, after a two-year battle with breast cancer, and his family fell apart.

A week before our sixth anniversary, I caught John coming upstairs from Nancy's apartment in his underwear. He confessed that they'd "almost" had an affair, because I "just wasn't any fun anymore." He said he still loved me, and I decided to let it go. Still, I'd have liked to move. But with my decreased work hours came a smaller paycheck. I knew we couldn't afford to make a move just then.

In December, the vacation I'd looked forward to for months - a visit home to see my grandmother for the first time in five years - fell through. John came down with chills and diarrhea at the airport. While he was in the men's room, I stood at the window watching our luggage fly away. He wouldn't get another break for months, so I cancelled my vacation leave and went right back to work.

Then one day in the middle of January 1977, I reached for a bottle of Wite-Out and knocked it off my typing table. It fell through the air in slow motion, and I felt part of me was falling with it, down from the top of a roller coaster. I grabbed onto the typewriter table and sat there in a daze. In that instant when my hand would not connect with the bottle, I'd felt some invisible switch in my body clicking off.

I got up from the typewriter, walked into my boss's office, and announced I thought I'd had a stroke. John was at home. I called him and he came and drove me to Dr. Zimmer's office.

Physical examination showed a slight lack of coordination. Since I said I felt dizzy, that didn't count for much. Dr. Zimmer told me to go home, go to bed, and rest. I complied, but I still had the powerful feeling that something major had gone wrong in my body. It seemed I'd lost some vital connection between my body and my brain. I felt stunned, confused, and unbearably alone.

At home, my speech slowed, and I began to find it hard to think of the right words for what I wanted to say. I stayed in bed, waiting to get better, but when I went to the bathroom my left foot began to drag. Soon the entire leg moved like a piece of dead wood. Then I began to lose control of my left arm.

Every day, as pre-arranged, I called Dr. Zimmer. Every day I told him I was just the same. I was afraid to tell the truth, afraid it might not be the truth, afraid I'd lost my mind. Before each phone call, I asked John the same anxious questions. Don't you think I'm getting better? Don't you think the rest will help? You don't think this could be serious, do you?

I wanted him to reassure me and tell me what to do, as if I were a child. Unwilling to take on that burden, he patted my shoulder or told me it was up to me. What did I think? His attitude convinced me I'd gone crazy, and I lied to Dr. Zimmer again to buy more time.

Finally, Nancy was the one to intervene. "She's going to fall and hurt herself," she said. "Her doctor has to know she's getting worse."

They were talking in hushed tones outside my bedroom door. Now John pushed the door open and strode angrily to my bedside, his face a mask of pain. "Listen to me," he said. "I have the worst toothache I've ever had in my life, and I don't think you're any better and I think it could be serious. Now please. I have to go to the dentist. Call your doctor and get things settled while I'm gone."

I understood then. I was dying, but I was the only one available to save my life. The downstairs door closed, and I heard the sound of Nancy's car starting up. I reached across our bed to the end table, picked up the phone and called Dr. Zimmer to tell him I was worse.

Dr. Zimmer said the dreadful words, "I'll have to hospitalize you to run some tests. " But he was not immune to the criticism he'd received while trying to treat me. He had two hospital affiliations, one at the prestigious Bronx medical center, and the other at a small Catholic hospital in Yonkers. When I said I was worse, he decided to get me a bed in Yonkers. He believed, on the basis of his examination of only a week before, that all I needed was some rest.

It was late on a Friday afternoon. Within half an hour Dr. Zimmer's secretary called to say I had to go to Yonkers right away. I had to be there before 5 p.m. or I couldn't be admitted until Monday.

I was alone in the apartment. Nancy had driven John to the dentist. Working with one hand and one leg I got up, dressed, scribbled a note for John, called a cab, packed a suitcase, and dragged it out to the landing. Then I threw the suitcase down the stairs, sat on the top step, slid down to the next, and so on until I reached the bottom.

On that long bump and slide down, I remember thinking this was going to make another great story. Like the time I moved myself by shopping cart in my early college days, or the time I carried a bookcase up two flights of stairs with my left leg in a walking cast.

Now, as then, I felt the exhilaration of being at the limits of physical endurance, the mental sharpness I'd always experienced when I was functioning at absolute capacity. It lasted until I gave the taxi driver the address, put a twenty-dollar bill into his hand. Then I sank down into exhaustion, and the cab ride was a blur.

When I got to my hospital room, I undressed and got into bed while a nurse asked me questions so she could fill out a form. I answered her in an exhausted monotone, still certain I was dying, but no longer able to care. Soon I fell into a deep unnatural sleep.

Dr. Zimmer woke me up, trying to examine me. "Raise your left leg," he said, but I couldn't. "Raise your left arm," but I couldn't do that either. "You're much worse than I expected," he said. "I'm going to have to move you."

Dr. Zimmer was afraid he'd made a major error in judgment. If the Coumadin I was taking had somehow built up in my system, I could die. But he'd admitted me to a small hospital without the resources to quickly determine if this was true. From my bedside phone, he called the Bronx medical center, arranged for an emergency brain scan. Then he called the chief neurologist, a Dr. Freeman, and convinced him to leave his dinner at home and come in to the hospital to evaluate me.

I was cooperative, but still basically in a dream state as Dr. Zimmer dressed me, propped me into a wheelchair, and wheeled me down to his car. There he found he had a flat tire and, not even taking time to curse, he ripped off his suit coat, pulled out the jack and a spare, and changed it himself. Then, sweating and covered with grease, he picked me up, placed me in the bucket seat and drove me from Yonkers to the Bronx.

On that mad car ride through the twilight streets, I knew Dr. Zimmer was worried. I must be in trouble, but somehow I couldn't seem to care. I was paralyzed, but I felt fine. Better than fine. Wonderful. But then I reminded myself that Dr. Zimmer was trying to help me. The least I could do was be cooperative. When I got to the Bronx, I must be scrupulous and thorough in reporting my symptoms. Unfortunately Dr. Freeman, the Head Neurologist, didn't share my sense of commitment.

He was annoyed to have been summoned by a doctor outside his field, and one he knew only by reputation as "Crazy Charlie." He arrived to find a largely unremarkable brain scan. My doctor, Crazy Charlie to the last, argued with him about the interpretation and insisted he saw an abnormality.

There was a lengthy file on me with reports saying I was a hypochondriac who liked sex when she wasn't too tired for it. And although I appeared to be euphoric, I conscientiously recited the history of my symptoms, including a blow-by-blow description of how I'd lost the use of my left arm and leg.

Dr. Freeman quickly concluded I was an hysteric and refused to allow Dr. Zimmer to admit me. Dr. Zimmer had to wheel me back to his car, drive me back to Yonkers, and readmit me there.

Once back in bed I slept again, but was awakened by the staff neurologist, a Dr. Bhopal. Dr. Bhopal didn't speak English very well, but he had no difficulty in getting his point across.

He poked and prodded me, and yelled at me, "A young girl like you can't move your leg?" He left, after hastily scribbling a few more notes on my chart.

I slept again, and when I awakened I'd been in the hospital in Yonkers for two full days.

Click here to move on to Section Three

Click here to return to "Freebook" page