My social worker tells me that it is hard to grow up with a chronically ill parent. She says it’s okay to feel neglected. Angry, frustrated, robbed, dysfunctional. She’s talking about my childhood. But as I put a hand on my burgeoning belly to quell the kicking, tears come to my eyes.
Before I was even born, my father felt numbness in his hands. It was right before he got engaged to my mother. The doctors called it stress. And whenever it occurred, my father would laugh and say, “I must be under a lot of stress.”
When I was in fourth grade, we went to get glasses together. I was becoming nearsighted; he was having trouble focusing. The doctor gave him exercises instead of glasses. It wasn’t until eight years later that the doctors began to mumble, “M.S.” — Multiple Sclerosis.
At my college graduation, my father was walking with two metal, arm-brace style crutches. He wore polished dress shoes and a lime green leisure suit, which he was proud to announce had cost him only $16 due to a computer error. Other fathers wore khakis, colorful polo shirts, and well-worn boat shoes. I have a picture of him smiling a toothy grin. To me, he was a burden and I wished he would walk faster — without falling.
M.S. winds its spectral ways through my life, and in and out of my heart and my brain. But before you have an image of me in a wheelchair, let me say, aside from residual tingling in my hands and legs that ever so rarely abates totally, I am currently symptom free.
Though I was haunted before I was even cognizant of it, my first memory is of early elementary school, first or second grade. The M.S. Society was sponsoring a read-a-thon and sent an accompanying film. I watched the film. In fact, I can still see the images when I close my eyes; it terrified me so completely. In the film, a man is getting married and while leaving the church he’s pelted by rice and experiences a moment of double vision. He rubs his eyes. Later, we see the same man on the beach throwing a ball. The ball rolls off his fingertips and he has to scramble to pick it up. He laughs. The next scene shows the same man, now with a beard, in a wheelchair looking out at the world with a vacant stare.
I took the read-a-thon to heart — I read many books — maybe 100 — and signed up many neighbors as sponsors. I felt that anyone could drop a ball or get rice in their eyes and see double images for a few seconds. Perhaps if I read enough books, raised enough money, I would be immune.
M.S. was all around me in so many ways. Right after college, my roommate went through the same thing with her father, diagnosed with strokes that no one noticed, then M.S.
A friend who always came for Thanksgiving was diagnosed. She faded quickly.
In the early 1990s, I belonged to a women’s salon. We were 20-somethings who got together once a month to drink red wine and discuss Anita Hill, Susan Faludi, and Camille Paglia. There was a member whose mother had M,S. My new friend drove a station wagon for the express purpose of taking her mother to the mall with her scooter. In contrast, my own mother didn’t even want handicapped plates.
My new friend was terrified of getting M.S. I became petrified. M.S. is not hereditary, we learned, but it does cluster in families. At that time, the statistics said that she had a 3 percent chance of getting it as the daughter of an afflicted mother. I had a 1 percent chance of a father/daughter connection. A 99 percent chance of escaping the apparition’s clutches, crutches. The statistics gave me false hope.
While I was working at an association and writing the company newsletter, the husband of a co-worker became very sick with M.S. He could still draw cartoons, which I published. He died when his lungs gave up.
My mother put my father in a home because she became afraid that he would burn the house down.
When I married, we had a separate ceremony in my mother’s living room for my father. I didn’t want to get married in a nursing home with the prevailing odor of urine in the air. Also, my father couldn’t handle crowds. So we paid for a van and a nurse to bring him to my mother’s home in Philadelphia. My mother bought him a silk, midnight blue paisley
robe to wear over his hospital pajamas. He was happy; I have pictures of him grinning toothlessly, but I don’t think he had a clue who I was or what was going on. I wore my mother’s wedding dress, which he didn’t recognize. I exhaled when they took him back.
We held a second ceremony in Washington two days later with lots of guests in a beautiful place, so that I could still have my dream wedding.
In May 1997, I had been married for almost a year. One morning after painting a door in my basement, I woke up with slight numbness in my fingertips, like I had been in the bath too long. I thought it was from being careless cleaning up the paint, messing with the paint thinner, but deep down I had a feeling.
In August, I was teaching a fiction workshop in rural Garrett County, Maryland when I woke up with hands and feet that felt like they were asleep. I panicked.
I knew. I was stuck in the woods, but I knew. I tried to think of something else.
When I returned home, I saw five doctors. They diagnosed me with carpal tunnel, Reynaud’s phenomenon, hyperventilating, water retention, and depression. But I knew. When I went to visit my father, I struggled not to say, “It’s starting.”
In the fall, my father’s nursing home doctor called me. I was working at a university and there was a line of advisees standing at my door. The doctor told me that my father had septicemia, a blood infection, from a rash they couldn’t control and asked my permission to let him go. I couldn’t decide what to do. My father was 64, could not walk and was incontinent. He couldn’t read or understand television. He used to believe that my mother made him sick, had poisoned him. Now he believed that it was the work of the nursing home. He didn’t know who my mother was and briefly had a relationship of sorts with another woman who would harass us when we came for visits. He was very unhappy. He hated the psychiatric ward in the Veterans Hospital, but it was the only place that would take him once he started biting. And when he bit, he drew blood, from nurses who tried to help.
He was more like an advanced Alzheimer’s patient than what most people envision M.S. patients to be like. He didn’t recognize me. He had no quality of life. So I asked what measures they wanted me to withhold. When I found out that the medication I would be withholding was intravenous antibiotics, I told the doctors to go ahead, move him to the hospital wing. Hook up the I.V. Save him. Antibiotics didn’t sound so heroic to me. That was early September. The doctors grudgingly complied.
About a month later, on October 25, with no warning at all, I woke up numb from the waist down. I had gone to sleep fine, and woke up without feeling. I could walk, simply because I could remember how, not because I felt my legs or the floor under my feet. I took a hot bath and massaged my legs. I tried to tell my husband. I went to the mall and bought a pair of comfortable, supportive shoes. And a colorful chenille scarf. And Polartec gloves. And new makeup, lipstick and mascara. Two large shopping bags of stuff. On Sunday, in the frigid, pouring rain, I went to the Major League Soccer championship game and my team won. I sat there wondering if I would ever be able to dance again. Feel sex again.
Monday, I called my doctor. We tried to get me in to see a neurologist. We failed. No one had openings for weeks. He sent me to the emergency room, and said he would have a neurologist meet me there. No one met me there. I received a basic neurological exam from an intern.
“Press down on my hands,” she said.
I pressed.
“Walk in a straight line,” she said.
I walked: heel, toe, heel, toe. I looked at her blunt page-boy hair style and wondered where she went to medical school.
“Close your eyes and touch your nose.”
She seemed nervous and unsure of herself. I snooped into my chart after she left. Positive for Bambino’s Reflex. Everything else was normal. When they tried to send me home after half a day of waiting, I screamed at the attending physician. His name was Dr. Love.
I saw a neurologist the next day. I had claustrophobia-inducing M.R.I.s, painful evoked responses and blood work. Nothing was conclusive, no tests showed any abnormality that added up to any diagnosis. My brain M.R.I. was clean. They had no answers. The feeling started coming back. I went back to work. Then I went to Jamaica.
In early December, I got another call from my father’s doctor. The infection was back. He had never recovered the first time. This time they strongly recommended against heroics. And this time, I took a deep breath and agreed to not medicate, nervously tapping a numb foot against the underside of my desk. My nails dug in to the bottom of my desk. His life as my father flashed across my brain — singing songs, cracking
jokes, tickling me until I screamed.
Now he was mostly a vegetable, his only reaction to stimuli was to bite. Whose fate had I sealed? I went to see him and said goodbye. He was no longer conscious. He was frail, bald, toothless, and sunken, and covered in oozing sores. He was wrapped tightly in a white sheet, as if it were all ready over. The fact that the nurse put on latex gloves made me afraid to touch him.
My mother handed me gloves from the box on the cart. I stroked his arm, his forehead. His only response when we were there was to try to bite the nurse when she adjusted his oxygen. He was dead from kidney failure a few days later.
We held a memorial service a week later on the winter solstice, the longest night. The rabbi who performed the service kept talking about how lucky my father was to get out of Germany in 1938. The crowd at the funeral home remembered my father best as the life of the party, a champion downhill skier, and an energetic businessman — not as the animal caught in a trap that he was at the end. So they were was aghast at the notion of my father being “lucky.”
After the service, I struggled with telling my mother that she wasn’t done with M.S. yet. Her only child was doing better, but I still couldn’t walk more than a block. My father had his first symptom at 30. I was 31. He was dead at 64, after a long struggle.
I thought of a friend from graduate school who had broken up with a long-time musician girlfriend. During a weeklong flicker of a dying flame, her hearing problems were diagnosed as M.S. He worried that leaving her now was evil. He didn’t want to pull a “Newt Gingrich.”
In June, I had a miscarriage. I was pregnant, just barely, and I knew something was wrong because my period was eight days late, but the home tests were still negative. I was very tired. I felt dizzy. When I finally got a very faint positive, I ran to the doctor. She called me with blood results the next day.
“You are what we call ‘a little pregnant,’ she said.” “You will miscarry any time now.”
As I put the phone down, the right side of my whole body started to go numb. From my ears and scalp to my breasts and stomach on down to my toes.
My neurologist implied that this was it. This would mean definite diagnosis. Multiple incidents, separated in time and space. I sat in the car for 45 minutes and cried.
The next day I woke up with double vision. It lasted four days. I couldn’t drive, watch television, read, use the computer. Well, I could, but only if I shut one eye. So after a day, I drove to work and just kept one eye shut. And on the fifth day, I woke up and I could see normally. I never thought about the future. I couldn’t.
After the pregnancy loss and a short cruise, I had another set of M.R.I.s that showed the bright spots of brain activity. The only hopeful thing the doctor could say was that the severity of my father’s illness didn’t have a bearing on the progression of my situation. Not very reassuring. He wanted to start drugs, but I wanted a baby, so it was put off. He
told me that he didn’t recommend breast-feeding, so that I could start medication right away after the birth.
I clung to a memory from a seventh grade slumber party. Six girls draped in flannel nightgowns were lounging around on the shag family room carpet chomping ruffled potato chips with French onion dip while Space Invaders cast an eerie green shadow around the room. Someone turned off the volume. The mother of the party-thrower told us about her diagnosis with M.S. when she was in her 20s. She was working a job that she hated. She went blind, completely sightless, for six months. She quit her job and never had another exacerbation.
I decided to look for a new job.
Another adviser at my school was diagnosed with M.S. She had two preschoolers, one who was fed through a shunt in his stomach. The wife of a man in the college’s marketing department was diagnosed. They had four children. After I left, the woman who got my old office started having M.R.I.s.
I got pregnant again in November. In January, I had another exacerbation. I couldn’t use my hands. I couldn’t type; I couldn’t write. I couldn’t dial the phone or chop dinner. I cried that I wouldn’t be able to hold my baby or change her diaper. I stayed in bed for a day with the blankets over my head. What had I done? I had a fearless friend who let me practice holding her bouncing six month-old boy during the meditative silence of a Quaker meeting. I was surrounded by people who were holding me in the light. I cried. I almost dropped him. But I didn’t.
I got a new neurologist. He was very reassuring. He knew I’d be okay in week or two because in the second trimester of pregnancy, hormonal changes would kick in and reduce my symptoms. And I was okay. I got my hands back and that was the end of that.
I breast fed my daughter for over a year. I’ve changed more diapers than I’d like to think about. Now I hope the odds favor my daughter not getting M.S. She has a 97 percent chance of not experiencing the phantasm of feeling first hand.
And while questions about the future flash across my mind from time to time like subliminal advertising, the apparition has been at bay for over six years.
Except six months after my daughter was born, I was back teaching just a course or two and very sleep deprived. I teach a course about violence and I chose a combination of essays from the textbook to teach the concept of “analysis.” The first essay in the text was a newspaper report of a man who took a hostage and then committed suicide.
During class, I was horrified to realize that the man took the hostage because he was despondent about having been diagnosed with M.S. And even worse, the psychology text explained “learned helplessness.” The students were to draw the conclusion that the man took the hostage, had the stand off with police and committed suicide because of the unpredictability of M.S. I couldn’t believe that I had assigned this reading. I couldn’t believe that in my brief perusal, I hadn’t realized that M.S. had followed me into my textbook and set up housekeeping.
Some nights, I have trouble falling asleep, because of what I might be robbed of by morning. Will I be able to see when I wake, will I be lame, or worse, stupid? Some nights I get up and watch television, just because I can. The images that dance across the screen make sense to me, for now. And maybe forever. Maybe.
My students are now haunted. I remember their faces that fall 1997 morning when I showed up for class tripping over my own numb feet and using a cane. All of a sudden. One day. And while my students were analyzing learned helplessness, did I learn anything? Yes.
After I lost the use of my hands, I had a new respect for Bob Dole. As a straight party Democrat, this is saying something. But Dole’s war injury left him so he can’t use his hand. He most likely can’t buckle his jeans, tie his tie, or cut his food without assistance. His courage, I think, goes largely unrecognized.
I learned about ramps and what it’s like to be left-handed in a right-handed world. I learned that men use only one hand to just dump shampoo directly onto their head and women need two to pour it into their hand first. I learned that if you send checks that look like a five-year-old wrote them and then sign them with your other hand, they don’t come back.
It’s fascinating to lose the use of something and get it back. It’s such a gift. I danced all over the house on the first day I could again. Like a wild woman. With abandon.
I never take holding my daughter or feeling the softness of her hair for granted. I cherish it. I cherish so much.
So while my mind does get perturbed by the phantom from time to time and my husband insists we live in a house that has only one floor, the apparition is keeping its distance right now. The specter of M.S. visits my family, my friends, my students, and my classmates in our imaginations — but not in my myelin.
M.S. scares us, makes us appreciate, and takes away and, sometimes, gives back.
STORY INDEX
ORGANIZATIONS >
Evoked responses
URL: http://www.nationalmssociety.org/sourcebook-evoked.asp
Exacerbation
URL: http://www.nationalmssociety.org/Sourcebook-Exacerbation.asp
Myelin
URL: http://www.nationalmssociety.org/sourcebook-myelin.asp
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