THE MALIGNANT UNCERTAINTY certain it was not serious. We rein- cally "nurse" reaction to what was By Carolyn C. Weeks forced each other's denial. probably a minor problem. He was Multiple sclerosis is a cruel para- During the course of the tests, sure it wasn't that. He was also sure dox. It holds out the hope for remis- all my symptoms mysteriously it wasn't the inner ear. sion on one hand, and on the other cleared up. Ah! Psychological! This It became imperative to me to hand, the constant threat of exacer- was confirmed, at least in my mind know just what it was! Didn't any- bation. In learning to live with this and my husband's when the tests all one realize that it had to be SOME- unpredictable disease, I've come to came back negative. It was the neu- THING? And that something just rely on the strength that hope rologist's opinion that the symp- happened to be nearly incapacitat- brings, while keeping the fear at toms were psychogenic, and my ing me! bay. It is not an easy task-it took internist passed that report along to I returned to my neurologist me almost six years to adjust. It me. determined to pin him down. I shouldn't have to take that long. Oh, glorious relief! The pneu- asked him if I could have MS. It all began insidiously. The monia, our recent move, working "Well, we've niled out every- first thing I noticed was difficulty part-time nights in coronary care, thing else," he said. with my balance walking down and taking care of the kids and But he couldn't say absolutely stairs. Since I had just gotten over a house during the day were just too that it was MS. It simply couldn't bout of pneumonia and had two much for me. I just needed to get be ruled out. He went on to advise toddlers to chase, I thought it was some rest, relaxation, and to shave plenty of rest and no exertion. just exhaustion. Some months later, mv schedule. Accepting a psycho- "Let's wait and see," he said. I noticed a weakness in my legs that genic cause was embarrassing, but Oh, how that thought stayed alarmed me, and an almost constant certainly preferable to the other with me. They couldn't rule it out. fatigue. These were accompanied possibilities. Could they ever rule it out? Or in? I by a tremor of my hands when pur- I'm sure a part of me denied read and thought and questioned, poseful movement was attempted. that simple explanation even before trying to find some viable altema- it was time to see a physician. the ataxia returned, and my eyes tive to MS, but couldn't come up By the time of my appoint- sometimes wouldn't focus. The in- with one. If my anxiety, showed, inent, I bad developed a marked ternist recommended I see a psychi- someone would invariably, advise ataxia. My legs would suddenly atrist, since I seemed unable to deal me to brick up since, after all, noth- give way beneath me. I dropped with my problems. Mv husband ing had been proven. I think it things, fell down, felt dizzy and said I'd be fine if I'd just get some bothered me more than the neuro- drunk. The internist recommended rest. Mv mother said she had alwavs logical symptoms-this long period a complete neurological workiip. I worried that my mind would snap if of malignant uncertainty. refused. Me sick? It just couldn't I kcpt up my awful pace. I became I went through this period vir- happen. "I know it looks bad, but angry. These people thotiaht I was tually alone. My family found it I'm really just tired. Besides, there's losing mv mind. They'd gone too necessary to pretend absolutely not a soul to keep the kids." far. They were copping out on me. I nothing was wrong. Medical people I arranged to take the tests on went to see one more neurologist. wouldn't discuss it because they an outpatient basis after a constilta- This one found some abnor- "just didn't know." It was unbeara- tion with a neurologist. I promised malities in the deep reflexes and a bly frustrating. I was forced to that if the tests showed ann.thing, I lessing of grip strength. He didn't retreat into myself and live a lie. would go to the hospital. Put if off, think I needed a psychiatrist. He The certainty, of the diagnosis, stav home, stay safe. I didn't want did want one more neurologist and however, was reinforced gradually to'worry my husband. He seemed an ENT specialist to see me. as symptoms recurred over a period I was filled with unanswered of years. The neurologist became questions. I quizzed these two con- less vague. He told me about MS sulting physicians about what was patients who had long, seemingly becoming my greatest fear: did permanent periods of remission. I they think I could have MS? The remembered every MS patient I'd former said he didn't know. The lat- ever taken care of. This was the ter actually laughed at such a typi- beginning of my overreaction. ------------------------------------------------ CAROLYN C WEEXS, RN., has experience in ICU, general duty, and pediatric nursing. She has been writing full time during the past three years, and is now working on a novel about child abuse. She reports that sne and her husband have just finished the remodeling of their house. --------------------------------------------------- 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 hus- band 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 ap- pear on TV. I avoided people who seemed to show pity or think of me as an MS patient first, a person sec- ond-if at all. My feelings remained bottled up, even from me. The breaking point came sud- denly at a baby shower. An ac- quaintance was discussing her daughter-in-law who was complete- ly disabled with MS. It was so depressing she couldn't even bring herself to visit. I fainted, just like in the mov- ies. 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. Regard- less 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-beitig 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 be- fore 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.