In October of 1979 when my Social Security disability case finally came to a hearing, I was as righteously indignant as only the victim of a great injustice can be. I'd spent an outrageous year and nine months fighting this case already. John and I had gone a dozen future years into debt, as I was slowly processed through two levels of denials to reach this hearing.

Go home and learn to live with your deficits, my doctors told me. But they didn't tell me how, when I had to spend my time requesting hundreds of pages of reports. Now so many doctors had written so many intimate things about me that I felt like a fictional character, and all these comments were in a legal record, open to review.

I'd spent a year brooding over the cruel hope that my illness was a figment of my imagination, and I merely a depressive, prone to hysteria. But my second MS attack, so recent in time and memory, removed those doubts. And if I was tempted to denial, there was always the letter Mr. Gianelli received from the Church, detailing my work history in a chilling review. "During the total period 8/23/74 - 5/2/78, her schedule was reduced to 27½, 25, and 20 hours during 35 of the 44 months employed...During her first four months on the job, she was sick 39 days. In 1975, 24 days; in 1976, 27 days; in 1977, 65 days."

The most depressing thing about these statistics was that they weren't accurate. I'd actually been absent much more often, but I covered my time out of the office with extra hours on well days, or personal time. Now, going into my hearing, I had few illusions about what was at stake. Very likely, I would never work again. This application for disability benefits was my last chance to make an economic contribution to my family.

Over the more than a year and a half I'd been at home, my economic status had become an increasingly important issue. Shortly after my second MS attack, I tried to learn to drive our car and discovered I could not master a clutch. The coordination on my left side was permanently impaired. Although it might not be obvious to the casual observer, it showed itself in tasks like these.

Now I was stuck in an apartment in the middle of a residential area, without a car. John went off to work with the laundry in his car or a grocery list in his pocket. His traineeship had started. Since he was working on his thesis, he often came home late. I sat in our apartment, six miles from the nearest market, one mile from the local laundromat. I was 20 blocks from the subway, and since my second attack riding on buses made me ill.

The simplest everyday things - a dentist's appointment, a haircut - were now virtual impossibilities. The obvious solution was to get a car of my own. But that wasn't likely on John's income. Nor was this the only difficulty with money. I didn't enjoy being dependent on John, any more than he enjoyed being thousands of dollars in debt.

I lived on an allowance. If I needed more, I had to ask for it, and I was childish, because I felt so needy, and I accepted our financial realities very poorly. John and I often argued. But when we did, I just wanted it to stop. God knows, I didn't want him to tell me his real feelings, because I was afraid I already knew what they were. Our arguments died under the weight of the one statement I couldn't make, you have to love me because I'm sick.

I couldn't keep playing the role of childish invalid, forcing John into the role of stern provider. So on that October day, as I waited outside the courtroom with John, Mr. Gianelli, and my former supervisor who'd come to testify on my behalf, I was prepared.

I'd thoroughly studied the details of my medical record - the visits to doctors, the hospitalizations, the tests - and I was more than ready to answer the question "Just why do you feel you're disabled?"

I knew, now, what happened when I got MS, at least until another attack changed the rules. What happened was that I was rendered totally unsuitable for the business world.

Doctors told me to make my own schedule. I assumed that meant to plan a schedule I could live with. Now I knew that it meant to follow my body where it led, moment to moment, day to day. For example, I was not always fatigued. I'd only been exhausted from morning to night for years because I was trying to live within the workaday nine-to-five world.

Without that burden, I found that my life had a rhythm all its own. I once thought that I had more energy than anyone I knew. This was still true, in spurts, but now I understood that this energy was unreliable. I could become fatigued very quickly, either mentally or physically, and the two weren't always in synch.

While most people's energy was gradually released throughout the day, as if they had a thermostat set to 72 degrees, my system worked more on the principle of a light switch. It had essentially two positions, on and off.

If I found myself standing in some room in the apartment holding an object in my hand and tiredly wondering what I meant to do with it, I knew my mental energy was gone. It was time to sit down or lie down and do nothing until I felt like getting up.

Alternatively, if I suddenly careened into a door frame, banging my shoulder and creating what I knew would soon be an enormous bruise, my physical energy had deserted me. It was time to sit down and rest my body.

Even on good days, one or both of these things would happen to me at least once in the late morning and early afternoon. No matter how well I thought I was doing, by mid-evening I was done.

On other days, it was as if one or the other of my energy switches had been equipped with a dimmer. If I woke up and found myself clumsy and mentally slow, I knew it was going to be a difficult day, that many more hours than usual would be spent doing pretty much nothing at all. This often happened to me if I'd pushed myself past my limits the day before.

During two seasons of the year, thus far with clockwork regularity, I'd wake up and find I had no energy, either mental or physical. I had, instead, the cranky sick feeling that meant I was in for at least a week in bed and probably one or two courses of antibiotics.

My body was inexplicably set to some cyclical pattern. Every December/January and every March/April I knew I would be sick. What I never knew was how sick or how long. Strangely, the hot weather I was supposed to avoid in July and August barely troubled me at all.

As for the symptoms classically associated with MS, I had them. But once again, I had them in an individualistic way. Blurred vision, for example. My first attack mostly damaged only the left side of my body. It was therefore likely that my left eye had been weakened, but we'd never know for sure. I was born with one nearsighted eye and one farsighted one. Since mine wasn't the kind of family that paid attention to these things, I stopped using my left eye for anything but peripheral vision before the age of 8.

After my first attack, I often had the sensation that part of the room had suddenly dimmed, as if a cloud just passed over the sun. Now I finally figured out that this was the equivalent of my left eye "blurring."

At home, this symptom was no more than a signal that it was time for me to rest. But in the office, it was quite another matter, and I could imagine the following conversation:

Boss: This typing job is a rush.

Me: I'm sorry, but half the room's gone dim. That means I won't be able to read this for a while.

Boss: Well, how long is a while?

Me: I'm sorry, I have no idea.

Of course, I could "push it," ignore my body's signals and go on. But that meant the next day would surely be a "dim" one, and every day thereafter progressively dimmer, until I found myself wildly staggering down that dark tunnel of exhaustion that led to another full-fledged MS attack.

As for the other classic symptoms of MS - poor balance, clumsiness, difficulty in walking, stiffness, pain - I had all these on a maddeningly variable schedule, usually during the periods when my mental energy switch was on but my physical energy switch had slid into the off position without my noticing. I would be walking along, thinking of ordinary things, then suddenly find myself flat on the ground with my left ankle sprained or broken. What happened? Did I trip, or step into a crack, or have a spasm? I never really knew. My first inkling of disaster was the searing pain in my ankle as it turned, and then the impact as my body crashed into the ground.

After my second attack, I found some new symptoms had been added to the mix. Now my right eye occasionally misted over, a very serious signal that I needed to take a break. The heat/cold sensing mechanisms on the right side of my body were damaged. Cold things often "burned" me, while scalding things (like too-hot bath water) did not. My right foot always felt cold, and I slept with a sock on, winter and summer. And there were "mental" symptoms too.

I'd become variably aphasic, which meant that I had occasionally had symptoms similar to dyslexia. Sometimes it was only reversing letters when I typed. Sometimes it was directions, like the subway trips which had plagued me just before my second attack. Sometimes, in speaking, I would mix two words together and sometimes, usually when answering a direct question, I couldn't come up with the word I wanted at all. Then there were the days I felt just fine, and suddenly realized I was wearing my shirt both inside out and backwards.

This kind of problem, an embarrassment in personal situations, was a disaster in the office. Imagine having an executive secretary who can accurately type 90 words a minute, except for the unpredictable times when she types 40 words of gibberish an hour.

Or imagine hiring a receptionist who has a wonderful manner on the phone, until she can't speak clearly.

Imagine having to introduce your new office manager by saying "This is Ms. Morse, who appears to have her shirt on backwards at the present time."

Imagine reading this statement on my application form: "I'm sorry, but please don't count on me December/January or March/April, that's when I'm going to be sick."

So what had I learned about what happened when I got MS? Well, I'd learned two important things. First, there was really no way I could prove myself to a doctor, just as there was really no way that any doctor could "prove" I was disabled to a judge. How well I looked, walked, talked, thought, and felt varied from hour to hour and day to day. How disabled I appeared to be, in public or in a medical examination, depended on a variety of factors. How busy had I been the day before, what time of day was I being seen, what day of the year was it?

But it was just this variability that made it impossible for me to hold a job. At the office, you can't just work when your energy switches are "on" and rest whenever you need to. So, the second thing I'd learned was that I was disabled from any "job" in the real world.

Now, going into my hearing, I knew I had "right" on my side. I'd consulted some of the best neurologists in New York, and they were convinced I had MS. For physical evidence, there were at least a dozen reports of fall related emergency room visits in my files. And there were the two major attacks, during which I'd been partially paralyzed, and the two drug trials I'd submitted to, both with devastating side effects

I had witnesses and years of documentary evidence, compiled with a painstaking attention to detail. The sources: medical tests, examinations, and reports. Now I was ready to give the judge facts and figures, dates and times and places. But, as usual, I hadn't the faintest idea of what was going on.

Mr. Gianelli tried to warn me. In our last conversation, he suggested I dress badly for the hearing. I was incensed. What kind of case did he think he was dealing with? Was there really any need for gestures such as these?

But as we were ushered into the hearing room, I began to realize that things were not as I'd imagined they would be. Why, it was a courtroom! Just like in the movies, only smaller. The judge, a bespectacled man in his mid-sixties, was actually dressed in judicial robes and sat high above us at a dais.

I looked around, then, to see who would present the case against me. But there was no one. The judge himself was prosecuting attorney. It was his function to stare down at us and ask us questions designed to trip us up. For one mad moment, I had a flash of a Marx Brothers courtroom skit, with the judge shouting "Objection!" at himself, and then screaming "Overruled!"

But as time wore on, the humor faded. Soon we'd all been testifying for hours, but where were the questions on my illness, the effects of my disease?

"Miss Morse," the judge asked me, "how did you get to this hearing today?"

"My husband drove me," I replied.

"Your husband?" he said, glancing down at his notes. "I'm sorry, I thought it was Miss Morse."

"Ms. It's Ms. I've retained my maiden name," I said.

"Yes, I see. I understand," he said, looking disapprovingly at me through his glasses. "And exactly where did your husband let you out of the car?

"...You say you feed your cats when you get up in the morning. Are you boarding any other animals?

"...Ms. Morse, do you cook?

"...Do you do any hand laundry?

"...Now, Ms. Morse, who does the grocery shopping in your family?"

The back-up questions to John were only more of the same:

"...And who puts the laundry in the car before you drop it off at the Laundromat on the way to work?"

And finally, "Ms. Morse, do you drive?"

"Well," I said, "I can drive, but I don't drive now, because I can't drive our car."

"And why is that, Ms. Morse?"

"It's a stick shift, and I can't master the clutch. I don't have the coordination on my left side."

"Are you sure it's that, Ms. Morse?"

"I'm sorry?"

"Well, I mean, lots of women have trouble mastering a clutch. My own wife has trouble with it. So are you sure it's a medical problem?"

By the time he asked about my education, I had the wild urge to jump up and yell, "I'm an economist! A nuclear physicist! I have a Masters in Business Administration! I have a full-time live-in housekeeper! I never wash the dishes! My time is worth $100 an hour!" But when I trotted out my Masters in writing, he dismissed me with a wave of his hand and asked what I did during the day.

"I write," I said. "I sing."

I once had a minor career as a folksinger. A comeback, although unlikely, was one avenue to be pursued, so I'd occasionally bring out my old arrangements and practic on the days when I felt blue.

"Well," he said (and I had the distinct impression he believed these activities were of no conceivable economic value), "that's very nice. Now on this form where you first applied for disability, I see a list of daily activities. Going to doctor's appointments, visiting friends?"

"Yes," I said. "Sometimes on days when I had a doctor's appointment, I would stop in at a nearby friend's."

"And this was every day?" he said.

I looked at him blankly. "Of course it wasn't every day," I said. "I didn't have a doctor's appointment every day."

"But this form says 'daily,'" he said, in a tone which suggested the final courtroom confrontation in a Perry Mason episode. "Daily means every day."

"How could I do those things every day?" I asked, genuinely bewildered. "You have hundreds of pages of doctors' reports stating that my illness has variable symptoms. Many of those days I was in the hospital."

"But 'daily' means every day," he said.

"For the first time in two and a half hours, Mr. Gianelli spoke directly to the judge. "Your honor," he said, "there seems to be a misunderstanding. My client clearly took the form to mean day-to-day."

"Is that correct?" the judge said sourly.

"Yes, it is," I answered.

"Well, all right, then," he said. "I wanted to get that straight. Because if you could do that every day, it wouldn't be right, you see."

And there it rested. As Mr. Gianelli escorted us out of the courtroom, he gave us an encouraging smile. "Now that," he said, "went very well."

Out on the street, I stared wide-eyed at John, wondering if the hearing had seemed as absurd and insulting to him as it had to me. For once, he looked back at me, shaking his head. "Wow," he said, "I never would have expected...I wouldn't have believed...What do you say we get a drink?"

It was such a small moment I almost missed it, the feeling that we were in it together, instead of me dragging him through my nightmare by means of a marriage vow and a ring. Perhaps this was something to build on, now that the hearing was behind us. If I could let my injured feelings go. It wasn't so long ago that ours had been a reasonably solid marriage. Like most couples, we had memories of wonderful fun.

On our honeymoon trip to Puerto Rico, we rented a car to drive to the rainforest. He was a new driver, and I hadn't learned yet, so I was given the job of navigator. Armed with my grammar school Spanish and an Spanish/English dictionary, I screamed, "Aha! 'Izquierda' means 'left,' by golly! The sign says, 'No left turn'! as we went whizzing by.

Then somehow we hadn't been having fun anymore. Because everything was serious, everything was a matter of life and death. But as I sat beside him at a local bar, sipping a Tequila Sunrise, I hoped we'd finally turned a corner.

If I won my case, my life would be returned to me, in a limited way. Of course, all the things that were terrible for me, all the things I hated and felt ashamed of, were all the things I needed to qualify for my disability benefits. No question of facing my disease with dignity. The system wanted blood.

I felt bitter that this was what it came down to, after all those years of learning new skills and moving up through the ranks. I remembered how impressed I was with my first supervisory position, how seriously I took my duties. Now I'd had to sit in an Alice in Wonderland courtroom and listen to a judge's treatise on the masculine nature of the clutch.

I didn't know why I felt offended. The judge's remarks had obviously been an attempt to prove I was a housewife. By his standards, if I was one, then John should grow up and support me and I should go home and stop asking for government money. Still, it had rankled to have it come to this, to see my illness treated no more seriously than any Victorian woman's "feminine" complaint.

But it was over. Now we could go home, and I could finally "adjust" to my illness. John would become the major breadwinner. If I won my case, I'd be getting enough money to make the payments on the loans. It wasn't the kind of life we planned, but somehow it was up to us to make it work. And if ours was to be this kind of life, then it was time to get on with it. Time to have the child we'd put off because we didn't know if I was dying. At 33, I felt I was already late.

Of course, we might have to make special arrangements, but he had a large extended family. When his traineeship was finished next September, he'd be ready to move into a well-paying job in his new field. I knew it would be a challenge, but what isn't? And, after all, what else was I planning to do with the next twenty years?

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