Harvard Summer Review: Letter to Myself

1999 Harvard Summer School Writing Program

Letter to Myself

Erika Wolf

I

"You are lucky because you are settled and things will be what you expect," read the letter I wrote on June 14, 1994 to thefuture me of June 1999. As part of a high school senior English class, we were required to write a letter to ourselves that would be sent to our parents' homes five years after graduation. The irony and innocence of my sentence now rings in my ears on a daily basis.

II

I was sitting at my makeshift desk: a rusted, metal folding plant table and inadequately sized wicker chair, the first time I saw the words Motor Neuron Disease (MND) and Amyotrophic Lateral Sclerosis (ALS). The apartment was quiet, my roommate long ago having fallen asleep, and the bright glow of my computer screen faded across my hands and face. At the time, my family still had no explanation as to why my mother's muscles had began to twitch, cramp, and lose strength. As I sat at my uncomfortable desk, my parents, from whom I inherited my night-owlness, called me from their home in New York. They said that at my mother's doctor appointment that day, a neurologist had briefly mentioned she might have some form of a MND. The doctor hadn't given her any real information on this disease, and my mother mentioned it in a nonchalant tone: as if I should go look up the symptoms and treatment for this little disease she might have. I wrote down the words "motor neuron disease" on some scrap paper and began searching on the World Wide Web.

The beginning of my search was frustrating as I kept coming up with articles about Equine MND: "My mother has some horse disease?" I wondered. Undaunted and enjoying my task of finding hard-to-find information, I was both happy and confused when I finally found a website devoted to people with MND and ALS. This particular webpage was simply done: extremely black letters on a crisp, white background--no colors, no pictures. The words written on the page looked professional and bold as they flashed across my computer screen. They looked as though they demanded to be written in capital letters; as if they could shout commands. Like all other ALS webpages I have found since, this page said something to the effect of, "ALS is a rare, fatal disease characterized by progressive muscle cramping, twitching, atrophy, and paralysis. Death usually occurs within two to five years from the time of diagnosis and is related to respiratory and swallowing weakness. Rilutek, the only prescription drug available for ALS patients, extends life approximately three to eighteen months."

I don't remember feeling upset by reading these words. I remember thinking that I had found the wrong information. "I must have spelled the disease wrong," or "My mother must have given me the wrong name," I thought. Although I was unimpressed by this new information, the look, feel, and obstinacy of the webpage still sticks with me. I waited until the next day to call my mother and tell her what I had found: "Mom, it says Motor Neuron Disease is fatal." "Well," she replied quite calmly, "I don't think I have anything fatal. I don't think we have to worry about that." I took this to mean that no neurologist, and by this point she had been to many of them, including top doctors at Columbia Presbyterian and Johns Hopkins Hospitals, had said anything to her about death. I don't know if this is true, and I don't think that I wanted to know.

III

I spent the next year working to find any possible disease that my mother might have that was not ALS. I cheered when she tested positive for things not customary with ALS: "Hooray, my mother has a stealth virus, Lyme disease, a neuropathy!" She tried many treatments for these diseases. Each time she got hooked up to an IV with a new kind of medicine, each time a visiting nurse came to administer some hard-to-administer drug, each time she swallowed a new pill, I thought this would be the medicine to stop the disease.

It really wasn't until much later the official ALS diagnosis was slapped on my mother as the best fit for her multitude of unusual symptoms and test results. She and my father had been to an ALS specialist at Beth Israel Hospital in New York. The team of neurologists there were the first to say, "Diagnosis: ALS." No "possible ALS." Once more, I heard the news over the phone. I remember speaking to my parents and feeling myself simultaneously turn numb and raw: I couldn't feel anything, yet I was a jangle of exposed nerves. It wasn't that the diagnosis was such a surprise, because by that point, ALS was more than just a bug in the back of my mind. It was that this was the first time someone had said, with certainty, "You have ALS." Although the statement itself is innocuous, it changes nothing--truth, whatever that is in terms of the disease my mother has, is not miraculously transformed into classic ALS just because of the doctors' diagnosis--it truly felt as if the words were a pair of scissors slicing me open, over and over again. That was the last day I allowed myself the luxury of sobbing. The last time I let myself fall into a heap on the floor and scream, and pound, and cry. Since then, I have become an expert in the art of crying silently. I can cry on the phone, or in the back seat of a car while carrying on a conversation as if everything is normal. And maybe this has become my "normal."

Originally, I thought my ability to cry quietly was a wonderful skill I had developed: I remember thinking so one night as I sat in the dark in the back of my parents' car. My mother, my father, and I had visited my aunt's home for dinner. As we were leaving, we had to fight a large step to get from my aunt's front door. My mother had the cane in one hand, and my father was holding my mother's other side. As she began carefully to step down, concentrating hard and looking at the ground below her, my father tried to "guide" her steps by pressing her arm forward. "Joel, don't do that!" she screamed. "You can't just move my body when I don't know it. I don't have control over my body. I feel like I am going to fall." My father, having a bad day, said to my aunt, "Do you see what I put up with? I try to help and she criticizes me. I can't do anything right." Standing behind my parents, I looked to my aunt, and then down to the floor. We took my mother to the car in silence. As we drove away, I leaned my head on the cold window and began to cry. My mother, not knowing I was crying, began to speak to me: "So, Erika, do you have any plans when you get back to Boston tomorrow?" "Umm, well," I replied, surprised at how sure and unwavering my voice emerged, "I think a few of us from the ballet are going out to dinner."

What started as a useful skill, a necessity, has become a constraint. Now I feel as though I can't physically cry. The little, piddling tears that escape from me are wholly unsatisfying. I look to other sources to give me a sense of release. I smile when the forecast calls for rain and feel unjustly persecuted when should-be rainy days turn sunny.

IV

The day the diagnosis matched the officialness of the webpage, I tried to go into work. Ballet has always been my salvation: "I will go dance. I will feel better," I tried to will myself to believe. I can remember entering the dressing room and changing into my ballet clothes, tears overflowing my eyes in a single, constant stream on either side of my face. I took my usual place at the ballet barre for warm-up, wearing as many clothes as I could possibly wear and still be able to move. Over my leotard and tights, I wore leg warmers covered by sweat pants, and a long john top, covered by a T-shirt, further covered by a zip-up sweater. I wasn't any colder than I ordinarily am on any given November day, but I didn't want to see my body. I didn't want to see a body that moved while my mother's was being taken away from her.

It isn't easy not to see your body in a ballet studio, especially when your spot at the barre directly faces a wall of full-length mirrors. I went through the motions in that ballet class, unable to put forth effort, unable to dance. I remember trying to balance on demi-pointe in first position, probably the easiest ballet position to balance in, at the end of one combination at the barre. I had my left hand on the barre and was facing the mirror. Ever since I was a young dancer, my balances have always been one of the strongest points about my dancing: I can find, maintain, and rely on them in a myriad of positions with ease. Not so that November day. Although I wasn't yet on balance, I removed my hand from the barre that was supporting me and looked at my reflection in the glass. Hot tears leaked out the corners of my eyes, and my body weight surged to the right, sending my arms to the left in an effort to counterbalance. But it was useless. I lost my balance and came down before the music was over. I stood, waiting for everyone else to finish. I had lost my center.

V

Before my mother got sick, she used to dance and run. She even came in first place in her age category in our town's Memorial Day ten-kilometer race. We happily screamed as we watched her approach the finish line, seemingly unaffected by the stream of carbon monoxide trailing from the cars in front of her. Her arms and legs were strong and shone with perspiration. She also had studied jazz dance as a child, and as an adult, picked up beginner, and later, advanced beginner ballet classes at the same dance studio where I trained. Sometimes I would take her ballet class en pointe just to take an extra class. At night, while I was in my room, she would come down the hall and say, "Erika, can you show me how to do those waltz turns?" And so down the hall, or sometimes into the kitchen, we would dance: "Step and brush and bend," I would demonstrate. "How does she do that?" she would always say, smiling at me.

Now my mom doesn't dance with me. Nor does she come to watch me dance in ballet class or rehearsals--she can't get up the steps to the studio. It is the day-to-day changes in my mother's life that anger and upset me now. Not being able to walk, dance, or run is terrifying, but more shocking is that she can't brush her teeth, can't put in her own earrings, can't turn on a light, or sign her own name. ALS seems constantly to search for one's dignity and sense of self, and when it finds it, it snatches it. The disease progresses in such a way that each time you think you have outsmarted it, it takes away another skill. Originally, my mother had only some trouble getting up the long flight of stairs in her house. Fine, she held onto the rail for support. Her left foot soon began to drop, it wouldn't flex at the ankle, so she began to wear her custom-made brace which keeps her foot in the flexed position. When that didn't work so well anymore, my parents removed the carpeting that ran along the steps so her sneakers would have a hard, wooden surface to push off from and climb to the next step.

Next came the cane and the lessons in how to use a cane to get up steps. But her arms grew weaker. She and my father bought half-steps to make each step half the height it once was. A few weeks later, she could no longer get up all the half-steps without feeling exhausted just inches and steps from the top landing. She would stop and teeter, with my dad or me behind her, near the top of the steps. I would say, "Count to ten. You are almost there," with my most convincing voice. But my heart would always race and my face and body tighten because I knew, if she really lost her footing, there was not much I could do to prevent her from falling to the tile floor below. Seeing her rest on that last step was more than enough to make my dad adapt the staircase once more. They installed a wildly expensive elevator stair chair that shuttles my mother up and down the steps along a purple track on the floor. The track looks like the scaffolding from the Dragon Coaster at the local amusement park. As you head up the stairs in the chair, the lift whirrs and bumps along, just as a roller coaster does when you are edging towards the top of the ride, and you prickle with the knowledge that your body will soon fly through the air--plummeting, free falling, down, leaving your stomach at the climax. But on this machine, the free fall never comes; the release and return to safety never come. The ride monotonously drones on. Now she is having trouble independently getting herself into the stair chair.

It is the same way with her hands. I used to get lots of e-mail from my mother. Gradually it got to be too difficult for her to type. She bought contraptions that suspended her hands over the keyboard so that she needed only move her fingers, but her fingers soon lost their dexterity and folded in on themselves. IBM, where she worked as a research psychologist, gave her a speech recognition program to use (ironically enough, at IBM, she helped to work on a different speech recognition program which types out what you speak). We find daily humor in the mistakes it makes. "My nose is doing OK," she tries to tell me one day after a fall in which she was rushed with a broken nose by ambulance to the emergency room. The program, however, types out, "rhinos is doing milken." ALS is now trying to take away the humor and wisdom we find in the computer's speech recognition by claiming my mother's laughter and voice as its next conquest. I don't hear it, but my mother thinks her voice is becoming weaker and that she is having trouble getting certain sounds out. Other ALS patients have recommended she make recordings of her voice now, so that if it comes to computer-simulated speech, the voice that emerges from the computer's microphone will be hers, and not Silicon Sally's. VI Recently I saw firsthand an ALS patient who was having great difficulty speaking. I accompanied my mother and father to an ALS support group meeting. As I wheeled my mother in, a tall, slender man, of about 60, took hurried, long, sure steps up to my mother. I watched, in disbelief, his gray slacks move: astonished to see an ALS patient with such a beautiful, strong walk. He looked directly at my mother and opened his mouth to speak, but only rounded, guttural, jumbled sounds came out. Seeing that my mother could not make out his words, he grabbed a pen and pad of paper from his breast pocket and fervently wrote, "Where were you?" My mother had not made it to the previous month's support group, and in this disease, a no-show at a meeting can mean death. He seemed so concerned, upset, even angry at her; his eyes stared hard at her while she explained that she had been too tired to come. After the meeting, where we learned about all the ways an ALS patient can choke while trying to eat and breathe, my mother recounted to me a previous month's meeting. She had been sitting by the door to the room, and a man in the last stages of ALS was being wheeled out by his caregiver. As he passed my mother, he moved as much of his paralyzed arm as possible towards her. She grabbed his hand and looked at him and tried to say something encouraging. She told me she can't remember what she said, or maybe she doesn't want to remember, but by the next meeting, he was dead. His caregiver came to the meeting and told my mother that what she had said had made a huge difference in his day that day.

VII

This never-ending cycle of death, this transience, the sudden disappearance of people you've come to know, is omnipresent. I do much of my research on the disease on the Internet, especially for tools and tricks that will help my mother and father with everyday living. I read about 50 messages a day written by ALS patients and their caregivers, and I pass on the information to others. But about twice a week I find an e-mail or a posting with the subject line left blank, and I know. "No," I say out loud as I debate whether I can take opening this mail at this particular time, on this particular day. I know I will find another eulogy to someone I barely knew, but whom I have been fighting for. One day, I was scrolling through the ALS Digest, which puts ten to 15 ALS-related e-mails into one big text, and I came across a posting that seemed relevant to my mother. "I'm looking for an adapted minivan that can accommodate a power wheelchair. I live in the New York metropolitan area," read the post. Usually, my first thoughts when I see these posts of people looking to buy or sell used handicapped equipment are grim: what goes unstated is the reason anyone would be willing to sell such goods--the original owner of them has died or is so weak they can no longer use them. This time, however, I thought, "My parents are looking into used vans in that area too. Maybe I should forward this post to them so that these people can compare notes with my parents." I highlighted the text, and only when I scrolled up did I see the writer's e-mail address: cwolf--my mother.

VIII

My mother is now awaiting the arrival of her power wheelchair and minivan. The wheelchair will have a joystick sensitive to the lightest touch, all kinds of seat belts, and places for boxes of oxygen and ventilator tubing. It will be able to scale and climb small curbs: "I'm going mountain climbing" my mother said with a sigh as we sat in the kitchen. The wheelchair is named "The Jazzy." "I'm going to go chair-dancing," my mother continued as she shimmied her shoulders as much as she could, this time eking out a smile from me in response. The wheelchair is covered by her insurance, but the $40,000 minivan, to move my mother and the chair, is not.

IX

Last summer I drove to New York one weekend because a six-member TV crew was setting up shop in my home for two days. They filmed my family because we were one of five families that would be profiled on the annual Jerry Lewis Muscular Dystrophy Association telethon aired nationally over Labor Day weekend. It was decided that my sister, Laura, and I were to be interviewed first, and the crew went to work for over an hour, rearranging our furniture, creating background detail, and setting up lights.

"What is it like to have to mother your mother now? What is it like that your mother can't be your mother anymore? What do you remember about your mother?" the voice from behind the camera and the lights asked.

"She's still here!" Laura yelled.

"She's still our mother," I cried, both of us ready to stand up and fight.

"OK, sorry, that was a bad way of asking the question. Go on," said the interviewer.

I began, "Just because she can't tuck us in at night or pick us up if we fall down, she's still the same person."

A long, terrible gasp came from my mother as she sat behind the camera watching us. She began to sob. "I'm sorry, I'm not helping," she blurted out. "Push me into the other room so I am not as close, this won't help them." My grandmother, my mother's mother, wheeled her into the next room.

The questions continued, but the tears that I expected to blur my vision didn't. It was too strange. Our house was rearranged and filled with strangers. Lights were pointed at me and microphones hung from my clothes.

X

In my letter to myself, I didn't predict it all wrong: my life both inside and outside the world of ballet and academia is familiar and happy--I have found my niche. However, as an 18-year-old, I never thought about expectations and situations outside of dancing, school, and living a full life. I took for granted that other parts of my life would always stay constant. I never expected I would know so much about neurology, ALS, death, and life. I never expected I would wake up in the mornings with words like "monoclonal gammopathy of undetermined significance" still circling in my head from the previous night's research. I never thought, at age 23, I would take my turn lifting my mother out of a chair, turning the pages of a book for her, or sitting with her while we all cried.

Now, as I remember that night, after the taping, after the stress-filled, loud day, I remember how the house fell silent.

As I lay in the quiet, I remembered how earlier that day I had noticed something on the blue handicap parking hang-tag in my parent's car that I hadn't seen before: an expiration date--2003. "What does that mean?" I had wondered before quickly pushing it out of my mind. Lying there, thinking about the parking permit's expiration date, I think I stopped expecting anything.

Outside, through Laura's open window, I could hear, see, and smell the build up of a storm. I greedily hoped that unstable atoms of oxygen would angrily collide into one another and release a cacophony of storm symptoms: lightning would strike, thunder would crash, and wind would force the house to rattle. But most of all, I wanted intense sheets of rain, rain that would leave deep indentations in the ground. Rain I could live through vicariously. A quiet, rolling thunder began to sound in the distance. I waited and waited. Next to me, Laura shifted in her sleep. I waited and waited. The rains never came.

PREVIOUS | TOP | CONTENTS | NEXT