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THE MALIGNANT UNCERTAINTY

By Carolyn C. Weeks

Multiple sclerosis is a cruel paradox. It holds out the hope for remission on one hand, and on the other hand, the constant threat of exacerbation. In learning to live with this unpredictable disease, I've come to rely on the strength that hope brings, while keeping the fear at bay. It is not an easy task-it took me almost six years to adjust. It shouldn't have to take that long.

It all began insidiously. The first thing I noticed was difficulty with my balance walking downstairs. Since I had just gotten over a bout of pneumonia and had two toddlers to chase, I thought it was just exhaustion. Some months later, I noticed a weakness in my legs that alarmed me, and an almost constant fatigue. These were accompanied by a tremor of my hands when purposeful movement was attempted. It was time to see a physician.

By the time of my appointment, I had developed a marked ataxia. My legs would suddenly give way beneath me. I dropped things, fell down, felt dizzy and drunk. The internist recommended a complete neurological workup. I refused. Me sick? It just couldn't happen. "I know it looks bad, but I'm really just tired. Besides, there's not a soul to keep the kids."

I arranged to take the tests on an outpatient basis after a consultation with a neurologist. I promised that if the tests showed anything, I would go to the hospital. Put if off, stay home, stay safe. I didn't want to worry my husband. He seemed certain it was not serious. We reinforced each other's denial. During the course of the tests, all my symptoms mysteriously cleared up. Ah! Psychological! This was confirmed, at least in my mind and my husband's when the tests all came back negative. It was the neurologist's opinion that the symptoms were psychogenic, and my internist passed that report along to me.

Oh, glorious relief! The pneumonia, our recent move, working part-time nights in coronary care, and taking care of the kids and house during the day were just too much for me. I just needed to get some rest, relaxation, and to shave my schedule. Accepting a psychogenic cause was embarrassing, but certainly preferable to the other possibilities.

I'm sure a part of me denied that simple explanation even before the ataxia returned, and my eyes sometimes wouldn't focus. The internist recommended I see a psychiatrist, since I seemed unable to deal with my problems. My husband said I'd be fine if I'd just get some rest. My mother said she had always worried that my mind would snap if I kept up my awful pace. I became angry. These people thought I was losing my mind. They'd gone too far. They were copping out on me. I went to see one more neurologist. This one found some abnormalities in the deep reflexes and a lessing of grip strength. He didn't think I needed a psychiatrist. He did want one more neurologist and an ENT specialist to see me.

I was filled with unanswered questions. I quizzed these two consulting physicians about what was becoming my greatest fear: did they think I could have MS? The former said he didn't know. The latter actually laughed at such a typically "nurse" reaction to what was probably a minor problem. He was sure it wasn't that. He was also sure it wasn't the inner ear.

It became imperative to me to know just what it was! Didn't anyone realize that it had to be SOMETHING? And that something just happened to be nearly incapacitating me! I returned to my neurologist determined to pin him down. I asked him if I could have MS. "Well, we've ruled out everything else," he said.

But he couldn't say absolutely that it was MS. It simply couldn't be ruled out. He went on to advise plenty of rest and no exertion. "Let's wait and see," he said. Oh, how that thought stayed with me. They couldn't rule it out. Could they ever rule it out? Or in? I read and thought and questioned, trying to find some viable altemative to MS, but couldn't come up with one. If my anxiety, showed, someone would invariably, advise me to brick up since, after all, nothing had been proven. I think it bothered me more than the neurological symptoms-this long period of malignant uncertainty.

I went through this period virtually alone. My family found it necessary to pretend absolutely nothing was wrong. Medical people wouldn't discuss it because they "just didn't know." It was unbearably frustrating. I was forced to retreat into myself and live a lie.

The certainty, of the diagnosis, however, was reinforced gradually as symptoms recurred over a period of years. The neurologist became less vague. He told me about MS patients who had long, seemingly permanent periods of remission. I remembered every MS patient I'd ever taken care of. This was the beginning of my overreaction.

I arranged my life around my dread of the disease. No strenuous exercise; watch for stairs, beware of infections that could weaken and trigger an attack. I talked my husband into moving to another house-a ranch house without steps. I quit my job. I left the room every time an MS Society ad would appear on TV. I avoided people who seemed to show pity or think of me as an MS patient first, a person second-if at all. My feelings remained bottled up, even from me.

The breaking point came suddenly at a baby shower. An acquaintance was discussing her daughter-in-law who was completely disabled with MS. It was so depressing she couldn't even bring herself to visit.

I fainted, just like in the movies. When I came around in my friend's bedroom, I began to cry uncontrollably. I went home and continued to cry for twelve hours. Finally I slept, then awoke and cried some more. I was in mourning for my happy, healthy life. Regardless of my family's reaction, I knew I was the only one to judge when I had cried enough.

When I had, and could talk about it at last, I told my husband how shattered I was by my life's prospects. I told him of my fears. He promised me he'd never put me in a hospital or home without my permission. That was a great fear of mine-being closeted away from my family. It was pure separation anxiety. Adults still stuffer, from it, though they've passed the holding coattails and crying stage.

I finally accepted it. I began to face each day for itself and live it to its fullest. I refused to give up my dreams. We bought a big old house in a lovely small town and planned to remodel it gradually. It was something we'd wanted to do before MS took over our lives. I think now both my husband and I, and even our two sons, are stronger and better people for it all.

I can't help but wonder, though, how different it could have been if someone had reached out to me during that early period of tests and questions and asked, "What are your fears? What's in your heart? What can I do to help?" How good it would have been then to talk to someone listening warmly.