Care Without Care (chapter Iii)

Barbara Fisher

Care Without Care

Chapter III

A true story by and about a young mother who sought health care for her child.

Barbara Fisher

Care Without Care Chapter III

First published by Avon Books (a division of The Hearst Corporation) in September, 1972 © 1972 Barbara Fisher

All rights reserved. For information address Ten Penny Players, Inc.

I had never been to a clinic. The hospital goes on for blocks and construction of new buildings is continuous. We had to go to the fourth floor. In order to do that you have to pass through the general clinic. The lighting was muted and yellow, and everything looked used. The walls were washable tile and Formica. Row upon row of seats were filled by sick people waiting for their number to be called. People sat slumped in their chairs. It was quiet where the sick waited; they didn’t speak to their neighbors or friends. Yet the whole impression I always had when I passed through was one of noise. Loudspeakers kept bleeping for doctors; attendants called people into booths. In front of the rows of patients were narrow doors, some with curtains, some bare. Like the dressing rooms in department stores, they are small and lead to examining cubicles. Each was numbered. Before being seen by the doctors the patients had to visit the registrars and cashiers. There were cashiers on every floor. No one saw you until you had cleared the cashier and had your receipt. There were different rates and everybody paid something.

I hated having to walk with the baby through the rows of the sick. But there was no other way to get to the elevator. You either entered through the front and passed the rows, or you entered through the side and passed those waiting at the pharmacy for medication. You couldn’t escape the sick in a hospital. We went to the fourth floor and presented the letter that the neurologist had sent us to one of the women at the information desk. We had to wait with all the other mothers and children. The children’s floor was painted faded turquoise. Teddy bears chased balloons and clouds were painted or decalled to the walls. There were no benches, only seats with arms. It’s very difficult changing an infant in a seat with arms, especially when the seats on both sides are occupied. It’s even more difficult changing a toddler. There virtually was no place to change a child except on the floor. There were no tables, no flat surfaces, not even in the bathroom. And you couldn’t even go to the bathroom. If you left and they called your name, you lost your place.

I don’t know how long we waited. At first, I didn’t time the intervals between arrivals and consultations. I do now. They vary between forty-five minutes and two and one-half hours. Since it was our first time there, it didn’t bother us. Barbrah and I talked and watched. The children ran wildly up and down the corridors playing. The mothers sat, not talking or reading or knitting, just sitting and waiting. Every once in a while they would call their child to them, adjust a bit of clothing, reach into a bag and pull out a snack for the child or a bottle of milk or juice. Everyone carried big bags. Everyone was used to waiting. They sat on the first floor. They sat in pediatrics. They sat in neurology. They sat in orthopedics. When there were no seats, they stood. And they waited. Every place I went in the hospital, they sat, staring, waiting for their names to be called over the loudspeaker. It was a very dehumanizing process. The bilingual mothers often bustled about acting as translators. There were many patients in

the clinic who spoke only Spanish. The hospital had few translators and few bilingual staff members. Someone was always pleading over the loudspeaker for a bilingual person to help translate for another patient. I was finally called and went to one of the booths. Before we could see a doctor we had to be registered and receive the clinic book. Page after page of forms was filled out. I had our insurance cards with us and that expedited the process somewhat. If we’d been Medicaid we would have had to go downstairs and visit a caseworker. As it was, since Ernie worked and I was considered a worker, although my income from free-lancing was sporadic, we paid top clinic rates. At that time it was twelve dollars a visit. I received a clinic book with a plastic card in it. The baby’s name and patient number were imprinted on it. It’s like a charge card. Only you paid first and then got an imprinted slip of paper entitling you to see a doctor. I started off by paying for each visit in cash. At this writing I pay by check. You can’t get your

money back if you walk out before seeing a doctor, but you can always stop payment on a check. We’d arrived at the hospital at 9:00 A.M. It was now almost noon. Our appointment with the doctors on another floor wasn’t until 1:00 P.M. We left and went for a hamburger. I was tired. All that waiting is very debilitating. It was the first time I’d been to a restaurant with the baby. People stare when your child is different. I live with cats. When people stare at cats, they stare back. That’s what I do. It’s easier than pretending that you’re not being stared at, and that you don’t know why they’re staring. My sister goes me one better. When people stare at her for one reason or another, she turns to them, crosses her eyes, and goes into a convulsive spastic-type twitch. People leave her alone. We went back to the hospital in time for the one o’clock appointment. We paid the cashier and went down the hall to the neuro area. It was packed. That’s rule one. Arrive about an hour earlier than your appointment at the clinic. Appointments are meaningless. It’s first come, first served. On the

counter is a long narrow box, the size of your clinic card. When you arrive, after paying, you put the clinic card in the box. The bottom ones see the doctors first. When we got there a woman lifted the pile and put her card on the bottom. The crowd turned on her; snarling and snapping; they pounced on the box and reshuffled it so that her card was back on top. I was expecting to see the neurologist who had initiated the whole visit. No such luck. After waiting about two hours, we were called. It was horrible to wait in the neuro clinic. Some of the people there really had terrible things wrong. No matter how badly you felt about your own problem (and the longer you wait, the worse you felt) you saw even worse at the neuro clinic. A large, round, pink and blonde lady was sitting opposite us, holding her baby, which was about the same age as Athelantis. The child, a girl, was pasty white and didn’t move or make a sound the whole time we were there. She was hydrocephalic and her head was very large. She had tubes strapped to her skull so that her head could be

drained. The mother sat motionless for two hours while we all waited. It was a relief to be called. The doctor was very young, obviously a resident. We went into the cubicle with him and the first thing he said (even before introducing himself) was: “Why are you here?” That was it. Barbrah and I both saw red. “I want to see someone who knows why we’re here,” I said. “Get us a doctor who doesn’t have to ask what the problem is. We have questions to ask and obviously you can’t answer them.” I was very loud. Barbrah was very loud. He bolted from the room and returned with a middle-aged man, obviously a full doctor. He introduced himself to us as the head of neurology for that month. They rotate the honors. The doctor we had come to see was on vacation. He recognized Athelantis as an Apert’s baby. Victory number one. I wanted to know when they would operate. He told us that the baby would have to be admitted to the hospital for a series of tests first and to be examined by a team of neurologists and surgeons before they could give us the operating

date. But that would probably be in about his third month. In Apert’s babies they prefer to operate about that time. If they’re lucky, the child is old enough so that they don’t have to re-operate when he’s six. Sometimes another operation is necessary to allow the brain to continue its expansion. The longer the wait before operating, the more pressure there is on the optic nerve. Since the brain can’t develop and grow normally, it starts pushing to the front and makes the eyes bulge. Impaired vision or blindness can often result. Even worse is the increased possibility of retardation. Until about three months, if the Apert’s baby is normal, everything is okay. But the longer you wait for the operation after that, the greater the chances of injuring the child’s intelligence. There really wasn’t anything else they could tell us. Except for his abnormalities he looked perfectly fine. I already knew that. He was healthy, even if he did cry a lot. We then had to go downstairs to the first-floor admitting office. We handed in our blue book and

went to the waiting room. And we waited . . . and waited . . . and waited. Finally, we were called to fill out more forms and there were more examinations of our insurance cards. They told us that we would be called as soon as they had a bed. It was after four o’clock. We had spent the entire day at the hospital. I felt drained. And all we had to look forward to was a long train ride home and more of the same. I’m not sure what I had been expecting from the hospital visit. Instant panacea? Immediate results? I realized that, strange was my child was to me, he was almost equally strange to the doctors. They had had only one hundred cases of Apert’s at that hospital. That’s not very many—too few to be able to give a good statistical prognosis, too few to know if their theories were correct. Nobody knew whether or not the operation would be successful. Nobody knew if Athelantis was retarded or normal. It’s hard to live with such indecision. It’s practically impossible not to feel embittered. Especially when they tell you that less than one out of everyone hundred thousand chil-

dren is born with Apert’s. You ask yourself, why? Why us? There are no answers. (To be continued)