In November of 1981, I knew the government was looking at my case, but I refused to spend my time worrying about it. Who knows? If I'd refused to worry the first time I dealt with the Social Security Administration, I might still be married to John. A new year was about to begin, and this time I was going to put my family first.

Jimmy and I made a good start in couples counseling. I learned to give him time before I pressed an issue, and he stopped calling me names. It was the friendliest we'd been since I got pregnant. When my son's first benefit check arrived, it would be retroactive, and I planned to take him on a cheap flight to California to see my grandmother.

Jimmy went through the apartment and semi-organized his things. The place was still small and crowded, but I was more comfortable in it. The baby thrived, and we were devoted to him. But still the increased benefit check did not arrive. Raising a baby was expensive, and we slid deeper into the hole.

Jimmy was easier to live with, but now he found it difficult to work steadily. Although he paid his own expenses, my check was left to cover ours. It didn't. When I called Social Security I discovered my local office had lost his file. They sent it to their International Division. When I called there about it, the worker craftily asked me, "Who lives outside the United States?"

"I beg your pardon?" I said.

"Who lives outside the United States?" he repeated.

I sat holding the phone, wondering if this was a multiple choice question and I should answer, "The British, the French, the Germans..." or if it would be sufficient to say, "Everyone who doesn't live here."

"Does your son live outside the United States?" he said finally.

"My son isn't even six months old," I answered.

"Does he live outside the United States?" he persisted.

"No, he doesn't," I replied.

"Oh, well, then," he said, "we shouldn't have his file. Whoever sent it here made a mistake."

Finally I had to call my congressman's office. It took my congressman's assistant another month to get my son's file delivered to the right place. She and I had a confusing exchange about this process. She called me to say that Social Security wanted to know why I'd waited two months to claim my son's benefits. It seemed to be an important question, but I couldn't figure it out. "I didn't know about his coverage," I said.

"That's a good answer," she said, and I wondered what would have been a bad one. Was Social Security always this suspicious of claims, or was someone scrutinizing my case?

At least the problem seemed to be settled. But while we were waiting for my son's first check, I received a letter "requesting" me to make an appointment with a Disability doctor for a physical examination. Attached to this request was a set of authorizations for my doctors to release medical information/file new medical reports.

Two days later my grandmother died. Now I sat numbly in my apartment, thinking that the government wouldn't even give me time to grieve. The paperwork flood was beginning again, and I had no way of knowing how long it would go on. I was a puppet to the system and it could pull my strings. Go here. Go there. Sign this. Fill out that form. Send it registered. I'm sorry, we did not receive it. If you do not cooperate, we will have to terminate your benefits.

Jump, jump, jump. Never mind if you have multiple sclerosis and have to follow your own schedule. Forget the life you've created to fit around your illness. We gave it to you, and we can take it away. Oh, yes, you're definitely "entitled," that's the law. But you must prove it, prove it, prove it! Does "daily" mean every day or day-to-day?

It never occurred to me, when I first applied for disability benefits, that life within the system would destroy every human relationship I had. Lose a grandmother? Well, that's to be expected; she was old. Lose a husband? Isn't it awful how people react to illness in the family? Spend another two years fighting the Social Security system, and I'd probably lose Jimmy. But if I lost him, how would I keep my son? Of course, I had no time to worry about that either. I had to make a doctor's appointment right away.

I went for my disability "check-up" in mid-December. This time the doctor's office was not downtown, but in a medical building on the East Side. Dr. Koopchik, an elderly, white-haired man, informed me he was a neurologist assigned to evaluate my case. I'd prepared myself to be physically examined, so naturally he declined. Except for a few simple walking and other coordination tests, he confined himself to writing down the history of my illness.

I hated Dr. Koopchik, and I hated myself. To prepare for this appointment, I'd made myself an expert, studying and memorizing my case history as if I were cramming for a final exam. Now my grandmother was dead, and all I could think of was multiple sclerosis. I was locked into this cubicle with a stranger, and I felt as though we both knew I was there to perform a sex act on him, and all we were dickering over was the price.

I knew Dr. Koopchik was a quack, as he told me fatigue was an uncommon symptom of my illness and suggested all my troubles would clear up if I would only lose some weight. Still, I had to go along with the charade and listen politely as if I hadn't donated my body to medical science for years before the top doctors in New York told me to go home and learn to live with my deficits.

By the time I left his office, I wanted to crawl into our little apartment and never come out again. Now I could finally grieve, or could I? Two days later, Dr. Goodman called and told me he'd overlooked the latest Medical Report request. Jimmy picked up a copy at his office and took it to the post office to send it by registered mail.

I thought we were in time to head off another crisis, but on Monday, December 29, I received a letter from the New York State Department of Social Services Office of Disability Determinations. In part, it read: "...based on evidence now in file it appears a determination would have to be made that you regained ability to engage in substantial gainful activity in 12/81. The evidence used to decide your claim was obtained from Dr. Koopchik. We did not obtain any other reports because this gave us enough information.

"The medical evidence," the letter continued, "shows that you have had coordination problems, and difficulty speaking. Since you were treated, your condition has improved." I paced around my apartment, running my hand through my hair. Since you have been treated? But there was no treatment for multiple sclerosis. Were they trying to deny I had multiple sclerosis? I stopped and reread the list of my "improvements": "...you could lift a maximum of 20 pounds, with frequent lifting or carrying of objects weighing up to 10 pounds, or walk or stand for much of the working day. Based on your description of your usual job as an Administrative Assistant, your condition does not prevent a return to this work."

"Oh, right!" I muttered. "I'm ready to go. Just tell me, on which day, at which moment can I lift and carry those 20 pounds? Which day is good enough to be a 'working day'? Haven't you idiots ever heard of the word 'variable'? You know, it means here today and gone tomorrow. Here in the morning, out to lunch in the afternoon. Now who's using 'daily' to mean 'day-to-day'?" Finally I stood in the middle of the room, shaking my head, but my thoughts kept racing on.

"I'm really glad," I said to myself, "that I can go back to work at my old job. I think I'll call the Methodists and tell them. Hey, I can walk. Sure, I can't type for more than an hour without dropping. I can't remember the names of the people I'm supposed to supervise. I can't work more than a month without being out sick for one day or thirty, but these are minor details. Won't they be thrilled to have me back?"

I tossed the letter onto the table and went into the kitchen to make a cup of instant coffee. But as I tried to add the milk, I saw my hand was shaking.

"Watch out!" I said to myself. "Don't let anyone know that you can pour milk! They'll send you back to work, and you'll have to keep on going until you have another attack and spend another three months recovering, so you can go right back to work again. Then another attack, and another, until you're in a wheelchair. They'll leave you alone then, take your son away and let you sit in the hospital or the nursing home, just like your grandmother, sitting and watching TV."

I stood in the kitchen, my hand jammed into my mouth to muffle my hysteria. Jimmy had the baby out for a walk, but I was afraid of the sound of my own breathing.

"Don't let them make you crazy," I told myself, again and again, until I was calm enough to go back to the table and reread the letter carefully. When I did, I saw I had ten days to offer Medical Reports from my two doctors. Ten days, and I didn't know if they started when the letter was sent or when I received it. I went to my Disability Concerns drawer, pulled out a pad and pen, and got to work.

Over the next week and a half, my memo pad filled up with notations:

Too anxious to do nothing, I made a call on Thursday, December 31, just to check on the progress of my son's benefit checks. A worker told me it would take at least 30 days to pinpoint the location of his file.

On Saturday, January 2, 1982, Jimmy and I had an argument. It was 11 p.m. and I was resting on our loft bed. Too restless to sleep, I tossed and turned, annoyed by the light and sound from the TV. Jimmy was watching the news. A story came on about the Pope, and Jimmy jumped up and began dancing around in front of the screen.

"Oh, suck my dick!" he yelled. "Is a bear Catholic? Does the Pope shit in the woods?"

"Jimmy," I snapped, "could you keep it down? I'm trying to sleep."

"Listen, stupid," he responded. "This is my Goddamned home and these motherfuckers don't have the right to push this religion shit on me! This is America! Separation of Church and State! But I guess you can't understand that. You're such an idiot that you believe in God."

I hadn't heard anything like this from him since we started couples counseling. I knew better, but I was in too bad a mood to just ignore him. Determined to tell him he couldn't speak to me this way, I got up to confront him. But the stress of the last few days had taken its toll. As I started down the loft bed steps, I lost my balance and fell.

At the emergency room, the news was bad. Both my left foot and ankle were broken. I'd have to stay in bed for several days before the swelling went down enough to put a cast on. Contrite, Jimmy rearranged the apartment so that I had a little sleep space in a corner of the room. I had him move the telephone near me, and the yellow pad and pen.

I couldn't call the next day. I had an appointment with an orthopedist to see about setting my foot and ankle. The news was really bad this time. I couldn't get a walking cast for three weeks. Now Jimmy would have to do everything for both the baby and me.

Although I had to crawl to get to the bathroom, I was relieved that my benefits weren't being challenged. My congressman's office called to say my son's benefits were just about straightened out. Then:

The same day, I called Mr. Gianelli. He returned my call at seven p.m. I told him what was going on.

"And things are pretty much the same?" he said.

"My illness hasn't changed, but I'm not married any more. I live in Manhattan now, and I have a son."

"A son!" he said. "Don't let Social Security know about that!"

"Social Security already knows," I said. "But don't worry. I can fully substantiate child-care arrangements."

"I wish you the best," he said, "but I'm sorry, I won't be able to represent you."

I hung up angrily, really scared. What did Mr. Gianelli know that I didn't? I thought Social Security was only making me pay for my checks, putting me through more of the same nonsense it put me through before. But what if I was wrong?

And yet, the continuing process was familiar. I kept sending in reports and meeting deadlines. Social Security kept ignoring them, demanding more as it had in the past. Yet at some point, I knew, a critical moment would come when the system had to give. In the meantime, no matter how it threatened, Social Security couldn't just cut off my benefit checks. They had to notify me well in advance, and then there would be appeals, leading to the inevitable hearing.

The important thing now was to get my doctors' reports on file. Dr. Goodman had kept a copy of his, but it turned out Dr. Nathan had never been asked for a report. He had to write one from scratch. Because of his thoroughness, he found the ten-day deadline tight, especially as two days went by before I was able to reach him.

Again, Jimmy picked up documents and delivered them, this time to the Social Security office. He said he was a messenger and demanded a signed receipt from Mr. Harris. This time I was taking no chances. This time I'd better get it right.

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