Muddling Through MS by Kathleen Scully Aquilino by Kathleen Scully Aquilino - Read Online

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Muddling Through MS - Kathleen Scully Aquilino

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Aquilino

Chapter 1

Backstory

The official diagnosis of Multiple Sclerosis (MS) did not come for more than twenty years after I had the first symptom when I was a senior in college. My mother and an older sister died when I was in my late teens. My father, overcome with grief, drank himself senseless and died when I was twenty-three. My much older surviving brother and sister (twenty-one and thirteen years respectively) were raising families of their own and, while they did their best, no one had the time to care very much about what I was going through. I was on my own and had to deal with it. Even if I didn’t fully realize or understand what it was.

And deal with it I have for forty years. Not always perfectly. Not always successfully. But never not trying. My life journey has had joys and challenges. We have survived as a couple and as a family. We count our blessings every day.

I chose an alternative path, relying only when necessary on physicians and pharmaceuticals, depending instead on less traditional forms of treatment such as chiropractic, acupuncture, and breast milk. That’s right—milk from nursing mothers.

I have also had counseling for the past twenty-five years as I navigate through life. That hour when I can let down my guard, talking to an empathic listener who doesn’t have to live with me or my medical issues, is a steam valve for my stressful life.

Twenty-five years ago, about the same time I started therapy, I began writing. Because I was not able to speak about it, I wrote out my pain. Journals. Essays. Memories. The grieving process, especially in the beginning, was excruciating. I learned that the only way to get through loss was to allow my feelings. I was liberated by putting the difficulties of my life on paper and offering the writing up for literary critique, not pity.

The teachers and fellow writers I met in classes encouraged me. Dig deep. Think big. They assured me that there were others who would be interested in or helped by reading about the experiences I have had with MS along for the ride.

With the great help of my wonderful editor, Carol Cartaino, I have organized the essays into chapters so there is the semblance of a chronological and thematic structure. Each chapter contains a number of essays that were written as individual entities but which deal with the same general period of time.

After my daughter read the first third of an early version of the book, she asked me: What’s your point? I was not insulted. She was critiquing the non-contiguous nature of the collection. Her question struck home. What was my point? Did I have one? Did I need one? My point is the same as my motivation: to invite readers into my world. I made the conscious decision, while still in my teens, to hide my pain and fear; to present to the world a person who seemed to fit her environment while, at the same time, being wildly out of sync with it.

If I tell you I have the measles, spots immediately come to mind. If I tell you I have Multiple Sclerosis, the image is vague. Cane? Wheelchair? MS is a disease that’s hard to capture in a symbol. We all live it our own way. This is MS my way, which includes the mobility devices mentioned but also issues with vision, neuropathies, bladder, and depression. MS is a systemic disease and the inflammation has far-ranging effects throughout the body.

This book will provide a look into my world as a person living with MS. I will share whatever knowledge I’ve accumulated during my four decades of struggle. The decisions I’ve made may inform others who are faced with crushing losses, pernicious diseases, and disagreeable doctors. There are many of us, and we each have to be our own advocate.

***

When I was six, I sat at my father’s desk and typed, with one finger, copying Bobbsey Twins books. When I had enough pages, maybe it would be MY book.

I apprenticed by reading far and wide and worked for a major publisher in New York City. All the while hoping it would rub off and I’d have a book.

I was drawn to Nancy Mairs’ books and essays, including Waist High in the World. Reading her, I came to the conclusion that I, too, had MS.

When Hope Edelman’s book Motherless Daughters was reviewed in The New York Times, I was at Barnes & Noble when they opened the next morning, so eager was I to read about women like me. Afterward I thought, I could have written that! Not the same book. But I knew a lot about the subject.

For Mother’s Day, 1999, my husband and daughter treated me to a four-day class on Martha’s Vineyard with Nancy Slonim Aronie (Writing from the Heart). The essay on my sister Mary got its start while I sat in Nancy’s yard with the other writers, eating her homemade bread.

In 2000 I attended a one-night class with Joyce Maynard (At Home in the World) in New York City. Joyce said she starts every book acknowledging she grew up in an alcoholic family. The words may not end up in the book, but that’s where she starts. I know a lot about that topic, too.

The essays in this book were written over more than twenty years. During that time, I went from functioning pretty well, to exhausted functioning, to almost an invalid, and back. And forth. And back and forth. That’s MS. Hard to capture in a definition, and hard to understand, even for me.

I’m naturally introspective and therapy over the years encouraged my self-exploration. I delved into theology, philosophy, and psychology. I was looking for an answer to a question I could not put into words. My life was never age-appropriate. The little girl who already had two nephews and a niece by the time she started kindergarten, grew up to be a sophomore in college burying family members at an alarming rate.

I tried to make sense of the losses that had been my lot. I was like a fighter on the ropes, with hardly time to get my bearings before the next blow brought me to my knees, absorbing the attitude that surrounded me as a young person: Get over it. You think you’re the only one with problems? The eternal questions kept coming to mind: Who am I? Where do I fit in? It warps me to this day into Pollyanna with a chip on my shoulder.

***

Like many things in life, the book grew almost without me noticing. When people asked what I wanted to do with my essays, I was vague, unsure. I didn’t think I had the energy and stamina to make a book.

These last few years, I’ve often spent more than twelve hours a day in bed. More like eighteen or twenty many days, I am reluctant to admit. I told God that if He wanted this book to be in the world, He would have to help in a big way. Enter Carol Cartaino. She says she loves jigsaw puzzles and she thinks I can write! She spent months ferreting out the book in all the writing I kept sending to her. In addition, it was Carol who convinced Nick that he should write what became the book’s Foreword, Forty Years of Kate.

***

A disclaimer is in order. My path, which has been anything but straight and clear, is different from that of many others with MS who follow doctor’s orders. Often, my saving grace is unconventional. I have only experience and some personal conclusions to offer. I’m not an expert in anything but me. Take from this book what fits and leave the rest.

Defined as an unpredictable disease of the central nervous system, MS can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted.

I am going to give you a window into what it’s like to live with a chronic disease. The fabric of life with a high level of uncertainty. The solitude. The challenges, positive and negative. The ups and downs. Protecting energy. Friends and support people. The tradeoffs. The past. My spiritual life. Can’t leave that out. God is always by my side!

Chapter 2

Hiding In Plain Sight

The diagnosis of MS avoided me.

The first symptom I experienced was lhermitte’s sign. Sitting on the floor with friends playing pinochle between college classes, I reached for a card and felt an unusual rush, an electrical sensation, down my spine. When the girl next to me said she didn’t feel anything when she bent her head, I knew there was something wrong. There were so many wrong things in my life at that point I thought I could just hurl it on the pile and hope it would stick.

After graduation, three friends and I rented an apartment in New York City. As we walked around, getting to know the city, my ankle was weak and turned under. Maybe there was clubfoot in the family and my parents had never told me. I tried to hide it and just kept going. The lhermitte’s was long forgotten, and I was not inclined to connect the dots.

I met Nick at Viking Press in 1973. He worked in the college marketing department. I was the secretary in Audio Visual. He was interesting, good-looking, fun, and very smart. We were both dating other people, which took the pressure off. We had burgers and beers at O’Brien’s on York Avenue, a block from my apartment, telling each other our life story. One night, in the movies watching Blazing Saddles, our friendship deepened. On the walk home, there was something our thumbs did when we held hands. We both knew.

He wasn’t Irish Catholic and he didn’t go to Villanova, so it wasn’t easy. My mother was no longer around to object, which in many ways made things harder for me to resolve. However, some inner wisdom let me see the good man in front of me. For almost forty years, he has stood by my side through sickness and health.

In 1974, the allergist might have had an idea of the underlying problem when I tested positive for 156 of the 160 substances he injected subcutaneously up and down my arms. I showed him the scuffed toe of my left sneaker. He referred me to an orthopedist who watched me walk down the hall and immediately referred me to a neurologist. I had classic drop foot, but I didn’t know that. Or what it might signify.

The neurologist stood over me on the examining table and told me to lift my right leg and resist his hand pressing down. Good. Seemed fine, I thought to myself. Then he went to the left side. Same instructions but, much to my dismay, my leg went down like it didn’t belong to me. No matter how hard I concentrated, the leg went down. I was only twenty-four, but I knew I was in trouble.

Nick and I sat in the doctor’s office as he told us he thought there was a neurofibroma, sort of a wart, in my spinal column. I thought: A wart? Are you kidding me? I grew up with alcoholics. I know how to hear what’s not being said.

In August of 1975, I was scheduled for a myelogram (a radiographic examination of the spine, largely replaced now by CT scans and MRIs) at Lenox Hill Hospital in New York. The neurologist’s concern heightened as the myelogram neared. I could read his anxiety. I knew he thought I had a spinal tumor.

The days and nights before the procedure I cried every twenty minutes. They were going to put a needle in my spine. I thought I was going to die.

After a calming IV in my elbow, the myelogram itself was fascinating. I felt warmth from the dye injected after the spinal tap. I was face down, tied into boots that were part of the table which was then tilted so the dye ran up my spine toward my brain. I could turn my head just enough to see the advancing darkness in my spine on the monitor. The boots kept me from sliding off the table headfirst. When the test was over the two residents assigned to watch over me relaxed noticeably. I didn’t need a diagnosis from the doctor. I knew I wasn’t going to die tomorrow. There was no tumor.

The headache from the myelogram kept me in the hospital for a week. Every day, the neurologist had me walk with him to the nurses’ station. The pain was so intense I broke out in sweat. Doc explained to me that my brain hung from the top of my head. The spinal tap altered the level of fluid supporting the brain. Thus the pain.

When we discussed my condition at a later date, I suggested (the first of my many mistaken diagnoses, self and otherwise) that since I had stopped smoking at the beginning of the year maybe the nicotine withdrawal had some effect on my body that made my left side weak. This neurologist, also a world-renowned ornithologist with an office on Park Avenue, said it was as good a theory as any and I felt ten feet tall and ready to meet whatever challenges my body threw my way. There were so many other things he could have said. I know people who would be ready to sue at not being told the diagnosis. But this was the first and maybe most important contribution to my attitude and confidence regarding medical issues that enabled me to avoid the diagnosis for twenty years more and live my life.

My sister Pat visited and brought a couple of nightgowns. In those days the patient’s chart hung on the end of the bed. She picked mine up and looked at my address. That confirmed what I’m sure she had guessed. I was living with Nick. She said nothing.

Our apartment in the Bronx was in a charming building constructed in 1924 on the corner of the Grand Concourse and Bedford Park Boulevard. Our perch was five flights up with no elevator. I lay in the hospital, teaching myself Lawrence Lashan’s method of meditating by counting bubbles to stem the anxiety, and trying to imagine how I could go up half a flight to the landing and lie down for a bit before doing it again. And again. Could I be discharged lying down, I asked. Doc said I had to be able at least to sit up in a wheelchair. I couldn’t get out of that place fast enough.

Aunt Gigi, my father’s sister, offered to take me in and picked me up in Manhattan. Her apartment in Larchmont had an elevator. Nick came up by train that evening. While my aunt was out getting us Walter’s, the best hot dogs in the world since 1919, we were connoodling on her fold-out couch. Loving and laughter have always been the best medicine for me.

In the seventies there was no quick, clear way to diagnose MS. Even today it’s a clinical diagnosis supported by an MRI. The neurologist in Manhattan in 1975 knew what I had, but he did not tell me or call it by name in the chart or the letter he sent to his friend the orthopedist. After that needle in my spine to confirm there was no tumor, he carried me as a demyelinating disease. He knew my parents were dead and my only apparent support was my boyfriend Nick. He didn’t want to put the depressing label of MS on me.

That was the gift of a lifetime.

There was no specific treatment for MS at the time. Steroids or chemo when in crisis. And degeneration. Good thing no one ever told me that!

Nick and I married and moved to Albany where he got an MBA. The ophthalmologist I consulted in Albany might have had an idea what my problem was when I got iritis twice in quick succession. If he had mentioned MS, I would have told him, mistakenly, that I had been tested and didn’t have it. He checked my sedimentation rate, a blood test that gives a measure of inflammation in the body, and that’s the first I knew of such a thing or the fact that mine was elevated. He tested for Rheumatoid Arthritis. There was nothing of note that I was told. I didn’t ask too many questions.

We moved to Hingham, Massachusetts for Nick’s first job after graduate school. I worked at a major medical center in Boston as the executive secretary for the Chief of Ophthalmology. One day, after reading one of his articles before filing it, I mentioned that I got uveitis, which is the umbrella term for inflammation in the anterior of the eye and a possible indication of serious disease. You DO??? he spun around. No. Maybe not. I don’t know, I said in a small voice. He sounded alarmed. I didn’t want to alarm him. Or me.

Before the year was out, I was in bed, in pain, unable to walk or work from the stress of that high-pressure job.

A friend suggested my problem might be in my head. I followed the hypochondriac thread and ended up with a psychiatrist in Boston. On my first visit, he told me to stop and turn around just as I entered his office. I was pleased with how I looked in my jeans and moved around easily. In a reassuringly dismissive tone, he told me to sit down. There was nothing wrong with me from his perspective. I told him my tale of woe. Is it in my head or my body, was my question to him.

He sent for my medical records and referred me to an orthopedist with whom he was working on a study of Vietnam veterans. That doctor took X-rays and tested me for many diseases. No one mentioned MS. It seems impossible to me now. Maybe I just didn’t or couldn’t hear it.

For nineteen years I did not return to a neurologist. There were flareups and symptoms (numbness, pain, stiffness, weakness, fatigue, and muscle spasticity). I knew there was something wrong with me but I tried to hide it. More than anything else I wanted to look like my friends. Do what they did. I was searching for normalcy following a difficult and different adolescence.

The spasms in my intercostal muscles, which seized my ribs if I stayed still for two hours (for instance, during sleep), caused pain when I took a breath and drove me to an osteopath. Later I would learn that this was an MS exacerbation called the MS hug. According to About.com, this is caused by a lesion on the spinal cord and… the sensation… is the result of tiny muscles between each rib… going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration. The osteopath adjusted my back in such a painful way I thought he broke it. He said I might have ankylosing spondylitis. I cried as I researched that at the library on the way home, sitting on the floor of the stacks in the basement. My spine is going to end up looking like a question mark. Is that the story of my life?

Nick and I wanted a baby. But those nights I wandered the house, unable to sleep for more than a couple of hours before the muscles spasmed, gave me pause. Would I be very pregnant, walking around in the middle of the night in pain? Ribs sticking into lungs when I took a breath. It felt like an iron corset. Doctors again suggested Rheumatoid Arthritis, or Lupus. More tests, all negative. I kept going.

Thurmon Munson, the great Yankee catcher, died in a plane crash on August 2, 1979. This reminded me of what I already knew: life can be kicked out from under you in a flash. There are no guarantees. We stopped using birth control.

The doctors were still scratching their heads when I got pregnant in November and all my symptoms vanished. The pregnancy lasted ten weeks, and I was never able to conceive again. I saw the best doctors in Boston and had every test. No one suggested I might have MS even though the infertility was an auto-immune reaction.

We bought adjustable beds so I could sleep sitting up, which gave me a little relief and some sleep.

Nick and I adopted a beautiful baby girl from Korea and life began again. We were now a happy family of three. We moved from Massachusetts to the Jersey Shore to be nearer our families and longtime friends. When our daughter was two, I had an opportunity to work as a real estate appraiser. The men for whom I typed at home agreed to teach me how to appraise. I had plans to accompany one of them on an inspection the day after Thanksgiving 1985. I looked at my little girl. Was I ending her childhood? Was I being selfish? To stop me in my tracks while I pondered this question, my feet went numb on Thanksgiving Day and stayed that way for a month. I was also numb from the bottom of my spine to my pubic bone. I told my first chiropractor, Numb feet is one thing, but I can’t feel myself pee. Sciatica was his response. My internist also examined me and told me to lie down for two weeks that ended up being four. He did not venture an opinion on my condition nor did he refer me to another doctor.

As was my way, to avoid crowds I had all my Christmas shopping done. So from Thanksgiving to Christmas I lay flat on the couch and played with my daughter, read to her, and watched Sesame Street. I always tried to make the best