Living with I Don't Know

Two months after my twenty sixth birthday, my parents, their small apricot poodle and I (my whole family) slid into my father's blue Lincoln in Chicago, for a drive to Rochester, Minnesota. I slept in the back seat and dreamed of the Mayo Clinic, which I envisioned as Oz, with a glowing halo around the buildings.

Four years earlier, I had danced myself across the stages at the University of Illinois, where I had majored in musical theatre. Now I couldn't walk a straight line without losing my balance. I lay in the back seat of my father's car like an exhausted rag doll.

It all started when I awoke one day with a limp; slurred speech and a right hand that wouldn't function well enough to sign my name. I was a bit shook up but, when I was back to my old self the next day, I attributed this strange spell to "just one of those things."

A month later in the cafeteria of the IBM building where I worked, I was carrying a tray of food, when all of a sudden my hands went limp. I dropped the tray and food flew everywhere. Then my legs gave out and I was on the floor. I was so dizzy that the cafeteria spun around me, a whirlpool of upside down faces wanting to help me up, buy me a new lunch, asking me what happened. I couldn't answer because I had no idea.

These incidents went on for several months. Each time I had an episode, I would be back to normal within a few days. I finally went to see a neurologist, Dr. Neil Allen. After he ran a battery of tests on me, he told me the bare truth. The disease I had was an enigma. I had Multiple Sclerosis. In 1976, as today, MS baffles its researchers. Every time they think they have figured it out, it goes into spontaneous remission or does something uncharacteristic.

"I don't know" was the answer Dr. Allen gave to my questions about the course of this disease. "I can't make any predictions." This didn't sit well with my father. He couldn't believe that his only child could have such a terrible affliction.

"Rubbish," he said. "We have to get a second opinion. You can't have MS, those people are all in wheelchairs, that's not for you."

My mother said, "Just promise me one thing, don't tell anybody - especially the boys you date. I don't want everyone gossiping about you. People can be very cruel." That's what she said. But she was thinking: "She'll never get a husband now."

Through a family friend, we were able to pull some strings and get in to see Dr. Peter Stone (not his real name), a famous neurologist at Mayo Clinic. I slept all the way to Rochester, through Eau Claire, Wisconsin, the land of sky blue waters of Hamms beer fame, and across to Minnesota - an eight hour journey. We arrived at Rochester in early evening and there was indeed a glow around the buildings of Mayo Clinic. But it wasn't a halo, it was the misty blue condensation of intense cold, the most penetrating I've ever felt. I lifted my head up to glimpse the November sky, and whispered "Oz" to myself. If anyone could help me, this doctor could.

Because Mayo Clinic is not a hospital, but an outpatient clinic, patients sleep in surrounding hotels and motels. We stayed at a Holiday Inn where dogs were permitted. When we checked in, we discovered we had left the suitcase with our pajamas and toiletries in the loading dock of my parent's apartment building. Since my illness, I had been staying there.

When I got to my motel room, unable to do much else, I climbed right into bed and Amber the poodle jumped in with me. My parents went to the local K-Mart to pick up replacements for the items we had forgotten. The nightshirt they brought back for me had Donald Duck cartoons all over it. I guess we were all regressing a bit.

The next day we got up early for my appointment with Dr. Stone. The Mayo Clinic Office building is tall and white, with each floor dedicated to a certain specialty . . . cardiology, ophthalmology, oncology, neurology - that was me. The eighth floor elevator door opened into a huge, packed waiting room where every seat was taken. That left the spillover to pace nervously around the perimeter of the room. The first thing that hit me was that they all had the same limp I did. This prompted my father, a Monty Python fan, to quip "Look Gail, the Ministry of Silly Walks!" I heaved a deep sigh. I fit right in here. On top of that, practically everyone here was my age. The brochure I had sent for from the MS Society announced in big, scary letters on its cover "MS - The Great Crippler of Young Adults." If I needed any proof, here it was.

When I ventured to the bathroom, a young woman was leaning against the sink, holding her head and moaning. She told me she had just had a spinal tap and, instead of making her lie perfectly still for the customary twelve hours afterwards, they had sent her right back out to the waiting room. Of course she had a headache! I had recently undergone a spinal tap at Weiss Hospital in Chicago and knew if you don't lie perfectly still, spinal fluid can drip causing the worst headache imaginable. I remembered how difficult it was to lie in the hospital bed, not moving a muscle, which to me meant not smoking (which I did often then). Even though I followed these strict orders, I still got a killer headache. I made a silent note not to let them give me a spinal tap. If Mayo wanted the results, they could call Chicago.

I walked, or rather limped, back to the waiting room in a less upbeat mood than when we arrived. I came here to get cured, not to suffer. We waited and waited and waited.

Finally the famous doctor saw me. He asked me to do the whole battery of tests I had just done in Chicago . . . blood tests, brain scan, electroencephalogram, spinal tap - plus something very new called a CT scan. I agreed to everything but the spinal tap.

These tests required me to run (or rather limp) all over the Mayo campus to various laboratories. It took a whole week, a numbing cold week which I remember as the most frigid of my life. When I wasn't taking tests, I was too dizzy to do anything but lie in bed at the Holiday Inn, while my parents tried to make light of the situation - by serving up a steady diet of positive thinking and Chinese carry out food. Because I was on massive dosages of the steroid drug Prednisone, I was ravenous.

Aside from my visit to Mayo Clinic, the other significant event of that week in November, 1976 was the Presidential election. On election night, my father went downstairs to the Holiday Inn bar to watch the returns. My mother and I stayed in the room.

After Jimmy Carter flashed his toothy, triumphant grin, my mother and I stared incredulously at the next image on the screen - my father looking depressed. He was being interviewed by a reporter from a Rochester TV station (It seems the Holiday Inn bar was the hot spot of Rochester). I don't remember what my father said, or even whether he voted for Carter or Ford, but I knew his grim mood had nothing to do with the election.

On TV, I noticed how drawn and tired he looked. I glanced over at my mother and saw that she wasn't wearing her usual, carefully applied make-up and that the dark roots of her platinum hair were showing, a sight I had never seen before.

Meanwhile, I was feeling worse every day. The week dragged by, a smorgasbord of neurological tests and chicken chow mein. I was heady with anticipation about my test results and could hardly wait for the return visit with Dr. Stone.

He had seen thousands of patients like me and would know what to do. He would give me something to stop the endless spinning in my head, or would prescribe a brand new therapy for my limp. He would get my energy back for me and I would tap dance out of his office in a red sequined costume, waving and blowing kisses all the way down the antiseptic smelling hallway.

By the time the big day arrived, my parents and I were practically mainlining hope. When I limped into Dr. Stone's office, his nurse handed me a terry robe. and directed me down the hall for a hot bath. "No way," I said. I had read about this particular test for MS. Since nerve cells don't conduct well in heat, a hot bath can trigger an exacerbation. In other words, if you could crawl out of the tub, you might need a wheelchair from that point on. "No thanks," I said, "I feel rotten enough. If you want to see some symptoms, just look at me. I'm so dizzy I think the office walls are all making illegal left turns."

The important doctor was not happy with my lack of co-operation. But after he scanned the results of my tests, plus the documentation I had brought with from Dr. Allen, he looked me straight in the eye and said. "Yes, Miss Isaacson, there's no doubt about it, you have Multiple Sclerosis." "Okay," I said and waited for the next pearl to drop from his mouth. I expected it to begin with the word "but" - Something like "But . . . the good news is we just got word that MS is cured, or but . . . April fools, or but anything!" The only words I could manage were: "What do I do now? He answered with the three words I had begun to hate most in the English language. "I don't know."

"What do you mean, you don't know," my father challenged. "That's why we came to Mayo. You're supposed to know." Dr. Stone repeated the same paragraph we had heard before. "Although researchers have been working on MS since after World War II, most notably Dr. Jonas Salk, very little is known about MS - except that it appears between the ages of twenty and forty, in colder climates, mostly North America and Europe and there is no MS in the Orient. "We don't know what causes it and there is no cure" was his closing line.

Feeling shattered the three of us slouched out of his office, picked up our poodle and checked out of the Holiday Inn. We drove back to Chicago in silence; Amber perched on my mother's lap, me prone in the rear - all of us thinking about how this second opinion would affect our lives. I wondered about the changes of direction I would have to make. How could I continue to work towards a career in the theatre?

When I got home, I went to see Dr. Allen immediately and he became an invaluable resource. He told me that every case of MS is as different as each person. I credit the advice he gave me about how to proceed with my life, with how I kept my head together through all of this.

"Move right on with your life," he said. "Do anything you planned to before you got MS. Don't think of yourself as limited and you won't be. "Funny," I said, "I suddenly have a

burning desire to join the U.S.gymnastics team." Dr. Allen laughed. One of the best things about him was he appreciated my sense of humor. Aside from the support of Dr. Allen and my dear parents, I felt completely isolated. My friend's problems seemed trivial; none of them had ever been seriously ill. On top of that, it seemed as if nobody I knew had ever been ill because, as my mother had warned, discussing your illness in those days was highly unfashionable. In fact, it could wreck your social life.

I continued to have a cavalcade of symptoms . . . double vision, numbness, fatigue, dizziness and loss of varying degrees of leg and hand movement.

Even so, I heeded Dr. Allen's words and got a new job as a copywriter at an ad agency in the Hancock building (something I could do sitting down.) I also moved to a new apartment that

was walking (or limping) distance to work.

In the theatre, I switched from performing to directing and mounted a show, "Suburbs of Heaven," by local songwriter Thom Bishop. At least one rehearsal I remember thinking, " I don't recall casting any twins!" Then I figured out I was having an episode of double vision. These symptoms persisted for four years, coming and going randomly. In 1980 I married my first husband (see mom, you were wrong.) Shortly afterward, we travelled to Japan. It was supposed to be a two-week vacation, but for me it turned into a weekend in Tokyo. My body went into almost total paralysis shortly after our arrival at the Imperial Hotel. I spent two horrifying days lying on a tatami mat, unable to move any part of my body. Since there is no MS in Japan, there were no doctors to consult. After many long distance calls to Dr. Allen, we boarded a plane back to Chicago. The stewardesses laid me out across three seats, and took me to the bathroom.

An ambulance met us at the plane in Chicago and sped me to Highland Park Hospital where Dr. Allen was waiting. At that time, he said I had a fifty-fifty chance of ever walking again. With Dr. Allen's help and lots of Prednisone, I was incredibly fortunate to be back on my feet within a month. And I have been in relative remission ever since.

During the past eighteen years, I have experienced occasional symptoms, but nothing bad enough to ruin up my life. MS was not the reason my first husband and I got divorced - just plain old incompatibility. MS has nothing to do with my second marriage either, except that we are careful not to take the quality of our life together for granted . . . a life that would be very different without Prednisone.

This so-called "miracle drug" doesn't do the trick for everyone with MS. It is used to treat such diverse conditions as colitis and asthma. Doctors don't quite understand why it reacts so differently with each individual.

I have been warned of its risks: draining the calcium from bones, shutting down the adrenal glands, feeding cataracts (which I already have.) It also could shorten my life. That is why I am currently working towards being Prednisone free. I pray I will be able to accomplish this - without setting the MS monster off on a joy ride.*

In 1999 a few things have changed about MS. For one, the MS Society has dropped its scary slogan, "The Great Crippler of Young Adults," which was supposed to boost fund raising, but inadvertently caused me and other people with MS to think about jumping off a bridge.

Today, MS has been divided into two major types: Relapsing-remitting MS has unpredictable exacerbations, followed by periods of partial or total remission, Chronic-progressive has steadily worsening symptoms. I am in the relapsing-remitting group but, because of Prednisone, I have very few exacerbations. In 1976, all MS was viewed as steadily progressive - period. The truth is there are all kinds of people like me living vital, active lives with MS . . . doctors, writers, artists, and yes, even actors.

In 1976, I thought I had the market cornered on diseases. What a short sighted view that turned out to be! Over the last decade, I watched as my friend, the distinguished composer Brian Lasser, died of Aids. Several girlfriends have battled breast cancer. And last year my husband was diagnosed with heart disease. Both of my parents are gone now and so is Amber.

Today it seems the "I don't know" I thought was my curse alone is in reality the "I don't know" of the human condition. C'mon . . . take my hand. The band is still playing. Shall we?

* In the year 2000, I began taking the new injectible drug, Avonex. It has been wonderful. I've been off Prednisone for three years now - with no exacerbations.