I‘D RETURNED THAT DAY FROM A SHORT VACATION ON CAPE COD WITH Kendall and felt tired from the trip. I drove to Northampton and let Kendall off at her house. Then I drove myself home to Shelburne Falls.
In the middle of our last night on the Cape, Kendall had waked me, telling me that a voice had come to her in a dream, saying: “Tell Margaret to feel the energy passing through you, into her, and back again. This will be only for a little while.” Kendall felt the severity of the message and embraced me with the strength of one sealing a pact. Neither of us consciously had any idea what the dream meant.
After returning home I had dinner at the Riverside Restaurant. A white candle burned on the table. Out the window, reflections of the street lamps on the Bridge of Flowers shone on the river’s dark water. The owner of the restaurant, Debby Yaffee, sat with me while I ate. I no longer remember a word of our conversation, though that was the last time I ever spoke in my easy Southern drawl.
Sometime during the night, I woke with a sharp pain in a tooth. I would find out later that I’d clenched my teeth with such force that I’d cracked it down its middle. But that night, I only roused briefly to think: I’ve just had a seizure, though I’d never had a seizure before. Then I lost consciousness.
The next morning I woke confused. Walking to the kitchen, I dragged my left foot slightly. At the table I fumbled with a pack of cigarettes, took one out, put it in my mouth, and lit it. When I tried to take a drag, the cigarette fell to the floor. I had no conscious awareness that half my mouth was paralyzed. Puzzled, I bent down, picked the cigarette up, and again put it in my mouth. Again it fell out. I picked it up, thinking, My God, I could start afire.
I put the cigarette out in the kitchen sink and dialed Kendall’s phone number. When she answered, I opened my mouth to speak, but what came out was terrifying guttural gibberish. Kendall responded with puzzlement, then alarm. I struggled with the sounds erupting from my mouth until I was able to say the single word, “Help.”
“I’ll be right there,” she said, and hung up the phone.
Waiting for her arrival, I sat at my kitchen table, writing. I wrote that no matter what I might sound like when I tried to talk, I was sane and rational. I thanked her for the beautiful weekend. I pushed my pen across the paper with a cold, calm terror.
When Kendall arrived, we immediately left for the hospital, but just as she was about to turn onto the Mohawk Trail, I stopped her because I’d forgotten to take my living will with me. I was afraid my condition would deteriorate and I would be hooked up to a life-support system that I didn’t want. We went back to my apartment and got it. I asked Kendall to call an ambulance. By that time, it had become difficult for me to swallow.
Kendall drove behind the ambulance to the hospital in Greenfield. There the examining doctor said that, because my case seemed to be complex, and because I had such difficulty communicating, he thought I should be in Cooley Dickinson Hospital in Northampton, where my own doctor could oversee my treatment. I was too weak and confused to disagree. The doctor said he would telephone my doctor to tell him I was on my way to his office. I didn’t think to ask him why I couldn’t be admitted to Cooley Dickinson immediately, for it was clear to me that I belonged in a hospital, not a doctor’s office.
No one suggested that I go in an ambulance.
I lay on the car seat, my head in Kendall’s lap, as she drove me to Northampton. “Nothing could be finer than to be in Carolina in the morning!” she sang while I looked at the tops of trees speeding by. “Amazing grace, how sweet the sound,” she sang as I worked to focus on the music and not what was happening in my newly unpredictable and frightening brain. “Swing low, sweet chariot, coming for to carry me home,” she sang while I lay thinking that maybe that was what was happening to me; maybe I was dying. She sang: “Pack up your troubles in your old kit bag and smile, smile, smile.”
When we got to Dr. Smith’s office, I held on to Kendall’s arm as I walked, dragging my left leg, from the car. Dr. Smith hardly had to look at me to know that I should be admitted to the hospital immediately. He asked his receptionist to get a wheelchair for me. She was a woman I’d known years before when her son and mine had been friends. She was visibly distressed. I tried to communicate to her that I didn’t want to leave for the hospital until I’d contacted my son or daughter-in-law. I was afraid I might die on the way. There was no answer, so she left a message on the answering machine, saying: “Your mother isn’t feeling especially well, so we’re going to have her admitted to the hospital.” Especially well? I could no longer talk, was leaning uncontrollably to the left, while the left side of my mouth hung open and drooped down. I could hardly contain myself until we got out of the office and into the car. I burst out laughing. I felt I might be dying, and she’d told my family that I wasn’t “feeling especially well”?
I couldn’t stop laughing.
I don’t remember being admitted to Cooley Dickinson. I don’t remember that first night when Kendall sat beside my bed all night long, holding my hand and stroking my head. She told me that toward morning, I said that I might have to go—meaning to die—and she begged me: “Please, stay. Please, stay.”
She telephoned friends for me.
The next day in Cooley Dickinson, I had a second stroke. I was getting up from the toilet when, losing my balance and the use of my left leg, I lunged for the grab bar on the wall to my right. I remember nothing after that. That stroke completely paralyzed my left side, destroyed my sense of balance, and left me with double vision. It also left me with a condition called left neglect, in which my brain refused to acknowledge anything to my left. I ate only the food on the right side of my plate, read only the page on the right side in a book, talked only to the person seated to my right.
Overnight half of my world had vanished.
Weeks before my stroke I had gone to my doctor with a complaint about my eyes. While examining me, he had commented that I seemed to be depressed. He suggested that I take some of the new antidepressant Prozac and gave me some samples. I said that I would think about taking them, but I doubted I would. I needed a life change, not a mood change brought about by drugs. For my difficulty with my vision, he made an appointment with an ophthalmologist.
I went the next day. I explained that in bright light my peripheral vision bleached out. After the doctor examined my eyes he left the room, returning a few minutes later with a large book in which he showed me a photograph of a scene in which the central image was clearly focused while the surrounding images dissolved in what looked like intense sunlight. “Is this what things look like to you?” he asked.
“Yes,” I responded.
He closed the book and smiled at me. “The good news is that there is nothing wrong with your eyes.”
He paused like a stand-up comedian about to deliver the punch line. “The bad news is that the problem is in your brain.”
He went on to tell me that in his opinion, I was experiencing migraines but without the pain.
Something told me that the difficulty was not that simple. I called my doctor, told him what the ophthalmologist had said, and expressed my concern. He responded that if the problem didn’t clear up soon, I might consider having a CAT scan.
Now he stood by my hospital bed looking down at me. He must have examined me earlier, but this is my first conscious memory of him after leaving his office for the hospital two days before. Now I had suffered a second stroke. What I saw of the room had holes in it like Swiss cheese.
My doctor looked puzzled. “Whatever it was that depressed you so severely is gone,” he said. “It’s as if a shadow has been lifted.”
I had no feeling of a shadow being lifted. But it was true—I was not feeling depressed; I was feeling panic-stricken. I was also beginning to face a major life change, not the kind I’d meant when I’d told the doctor I needed a life change instead of the Prozac he’d offered me, but one that would leave my vision forever changed.
Kendall sat beside my bed, reading aloud from May Sarton’s memoir After the Stroke, while I drifted into and out of consciousness. A visitor—I’d already forgotten who—had left a little vase of flowers, and a nurse had just taken my blood pressure. Or was that in the morning? My memory was hazy, fragmented. “Head,” I said, touching the right side of my head. “Head.”
Kendall reached over and stroked my head. The headache wasn’t intolerable yet, only relentless and exhausting.
Before the strokes, I had had one headache in my life that was severe enough to be memorable. That was in 1959, in our first apartment in West Philadelphia. For the duration of the headache I lay on the daybed in the living room, trapped in pain. My maternal grandmother’s migraines were legendary—occurrences of terrible mystery, silence, and dark rooms. Though I never witnessed one, I’d heard about them all my life. As a child, I’d felt a sense of awe about them; her inaccessibility coupled with my longing for her attention and affection encouraged my romanticizing of anything that was hers. My mother had also had headaches but called them headaches, not migraines, the word that in my child eyes lifted the experience into the realm of the extraordinary. Still, she would moan, “My head is splitting. My head is splitting,” or—on occasion—would slam the back of her head against the wall with great force, as if that self-imposed violence might somehow minimize or at least distract her from the less controllable pain of the headache.
My second memorable headache came in the hospital after the second stroke, though I don’t remember exactly when or how long it lasted. When I asked my daughter-in-law, Mary, about it, she thought it must have lasted a week or two. She told me that the family was afraid that the stroke had damaged a pain center in my brain and that I could possibly live the rest of my life in that agony. “In that case,” she said, “we were hoping that you would die.” I knew nothing beyond my attempt to endure from one assault on my brain to the next. Each seizure of acute pain brought a rerun of the film of John Kennedy’s assassination—the impact of the bullet exploding the brain. My whole mind was filled with that image.
But what obsessed me afterward was the thought that the headaches that my sister, Harriet, suffered after she was born were even more painful than my headache, without any medication to dull the pain.
John Elder stood looking down at me, his right hand thrust open toward me, holding a small gray model of a Mercedes. Later, when my headache finally went away and my mind was clear, I examined the model carefully and saw that it was a little more than six inches long and made of metal. It was exquisite in its fine details—doors that opened, a steering wheel that actually made the front tires turn, and one long windshield wiper that worked. But that day I saw only my son’s expressionless face.
Expressing himself emotionally had never been easy for John Elder, but somehow the gift of that model car said all that needed to be said. Car was the first word he spoke at eight months, and it was riding in the car that had given him comfort when he was a baby. Cars were one of his major focuses from childhood to the time he made his first drivable car from old car parts to creating his own car business. The Mercedes is one of the cars his company still services and sometimes sells.
Of all gifts given to me when I was in the hospital, it was that car that I treasured most. Over the years since the stroke, I’ve had many visitors with children, and I’ve always kept a basket full of toys for them. But until John Elder’s son, Jack, was old enough, I allowed no child to play with the little Mercedes.
When I finally gave Jack the car, I was impressed by how carefully he played with it, pushing it across my kitchen-workroom floor, opening and closing the doors, turning the steering wheel, pushing the windshield wiper back and forth. He was especially fascinated by the windshield wiper. As I watched him push it back and forth over the windshield, I remembered the little boy John Elder spending a long time one afternoon pretending to be windshield wipers. He walked all over our small apartment in West Philadelphia, moving his arms back and forth while repeating the words, “Windshield wipers. Windshield wipers.” He continued this for a long time before he came to me with a look of concern on his face. “Mama,” he asked anxiously. “Am I really windshield wipers?”
“No, John Elder, you’re not windshield wipers,” I assured him. “You’re a little boy.”
I gave him a hug and he went off happily to play but no longer pretended to be windshield wipers that day.
“Can I have some water so I can use the windshield wipers?” Jack asked.
John Elder came from South Hadley, and Chris came from New York, where he now lived and worked. Kendall took several photographs of the three of us together. In one, John Elder is seated to my right, the fingers on our right hands interlocked. Chris is to my left, sitting on the bed. In another photograph Chris is supporting my head with his right arm. In both pictures we are all looking into the camera lens. The pose feels formal. But my hair is uncombed and my hospital gown has slipped off my paralyzed left shoulder. The left side of my mouth droops badly. These things make me look vulnerable and sadly comic, while the expressions on my sons’ faces are restrained and sober.
Later Kendall took more pictures of John Elder and me. We are seated in chairs at the ward hall. My head is propped on a pillow, and my hair is still uncombed. In the first, John Elder is looking into the lens with a slight smile on his face, while I am looking at him and smiling. In the next John Elder is asleep, his right arm across my bent leg, my right hand on his arm.
Then she took a series of Chris by himself, his expression pensive, his eyes turned away from the camera. His hair is still thick and curly, and his face looks tender and soft. I cherish those pictures. I had no idea then that I would see him only a few times over the next twenty years.
My speech was broken, and I felt lost in the wreckage in my brain. Each syllable spoken was an exhausting explosion of breath. Talking was slow, difficult to understand, drained of emotion. I left out words, confused tense, gender, and time, saying yesterday when I meant today, today when I meant tomorrow, he when I meant she, done when I meant did. Strange inversions of words came out of my mouth uninvited, unexpected. I often used sentence structures that sounded as if I were translating from French. “How many years has she?” I would ask, meaning to say: “How old is she?”
I puzzled about my strange loss of grammar. I thought about how it would have been were my mother alive to see me. Her speech was as precise and controlled as the public appearance she maintained when I was a young girl in the forties—firmly corseted, with high heels and hose, lipstick, rouge. She never used slang. As a child, I lived in dread of making grammatical errors and having her correct me.
Inside me, time collapsed and I was once again twelve years old, sitting on the couch in my parents’ living room. Across the room, the large electric fan rotated its caged face, blades stirring the thick August air. Harriet sat in her wheelchair, blond curls damp against her head. While my mother talked with her friend Francis, a small, dark-haired woman with short, tight curls, Francis’s daughter, Kate, raced back and forth across the room, terrible guttural noises—great thrusts and heaves of sound—erupting from her throat.
Harriet and Kate, both born with cerebral palsy, were the bond that connected the two women—my mother, restrained and proper, Francis, burning with intensity, chain-smoking Pall Mall cigarettes, and talking rapidly about her husband’s heavy drinking, concerns about Kate, or how the world was going to come to an end any day.
Kate must have been eight or nine years old when we met the Hollingsworths. Already she was a tall, big-boned girl; it would be only a couple of years before she towered over her mother. I was upset by Kate’s banging on the piano with her fists—a fierce thunderous sound that was often accompanied by her loud guttural noises. Then she would rush back and forth across the living room, flinging her arms out, wildly scratching at the air. It was as if she was clawing at some invisible wall, frantic to escape.
Francis told us that the doctors at Johns Hopkins said that Kate’s brain held no capacity for understanding or making human speech. The horror of being without speech haunted me. My sister couldn’t speak at all either, but she seemed to be able to understand at least a little of what we said. When one or another of us would ask, “Where’s the little boy who looked after the sheep?” she’d close her eyes in response before we’d say, “Under the haystack fast asleep.” I clung to that small indication of communication with my sister. But I can’t remember an instance when Kate appeared to comprehend what anyone said, though she must have understood some of her mother’s communication if not the actual words. Looking back I can only remember her noises and abrupt, disruptive movements. I never saw Kate smile or cry.
I remembered how the first sounds I blurted into the phone receiver when I called Kendall that morning after my stroke sounded like the guttural sounds that I had heard from Kate more than forty years earlier. Hearing myself terrified me. Was that part of my brain that made and understood words being destroyed? Was I going to be like Kate?
Before Mother died, she told me that Kate was living in an institution. She told me that Francis’s husband had left her and had later killed himself, and that Francis herself had died of a cerebral hemorrhage. Kate was with her in the car when it happened. Francis’s death was instantaneous. Repeatedly over the years, I replayed what that cataclysmic scene might have been like as the blood broke through its walls and drowned Francis’s brain in its red fury.
I imagined Kate stunned in the aftermath of that car crash. For the twenty years of her life, Francis had been the only person Kate had. It was Francis who cooked three meals a day for the two of them in that large house, Francis who helped Kate bathe and dress. It was Francis who brushed her straight brown hair. It was Francis who took her to the mall and grocery store and every other place she went. Francis was Kate’s world, and Kate was Francis’s.
If the two of them had no bond of speech, what they had was daily life. Whatever of their bond was love, need, responsibility, or making do with what life dealt, I can’t say. And I don’t know how Kate acted in the tumultuous wake of Francis’s death. But I can’t imagine Kate in that car alone with Francis’s body without imagining rising from her depths a heartbreaking howl of sorrow more terrible than any sound she’d ever made before.
My memory of the early days and weeks after my stroke is fragmented and blurred, and I’ve forgotten the proper sequence of things. Kendall’s presence was a constant. She stayed with me day and night. Friends and family came and went. Nurses came with medication, the blood-pressure gauge, and the thermometer. Aides came with changes of linen, meals, and the bedpan. Lab technicians came with their needles and tubes. Physical and occupational therapists came trying to help me do things I was no longer able to do in the old ways.
Confused, disoriented, and with the acute pain in my head barely dulled by drugs, I repeatedly asked my friends to please bring me pens and notebooks. I’d lost so much of who I was and was frantic to hold on to what I had left. All feeling was absent from my left side. I felt like I had half of the body of a corpse attached to the living me.
Speech as I had known it was gone. But with shattered syntax, senseless repetitions and omissions of words, and bizarre spelling, I could still write. More than anything else, I clung to words.
Kendall brought me a new journal—a sturdy hard-backed account book, green, with lined paper. On May 10, I wrote my first journal entry:
I feel so helpless … hurt my face trying to sleep … I have a bad headache and my head hurts and my head aches. Also, I need my glasses. I am very sad and feel like crying. I close my eyes and think: I must learn patience.
Feeling helpless was what upset me most. When no friend or family member was with me and I wasn’t engaged in speech, physical, or occupational therapy, I felt like the baby I had been, helpless and alone, screaming in a closed room.
On May 16, I wrote a fragment of a poem in my journal:
Spring rain on the windowpane. Trees,
gray sky. And listen—
I can call back the day
that you pushed me in the wheelchair
in the park. Stones, I say.
And moss. Fragrance of fresh earth.
An additional line has been scratched through, and the poem was left unfinished. But I’d discovered what I needed to know—I could find a way to comfort and calm myself when I was alone. If the hospital felt unbearable to me, if I felt trapped and anxious in my body, I could “call back the day.” I could remember what comforted and nourished me and give it the form of poetry. The outing in the park referred to in the poem was my first outing in the wheelchair after the stroke. Kendall had pushed me across the street from the hospital to Childs Park. Because the muscles were too paralyzed to hold the bone in, my left arm hung out of the socket. To ease the pain and to keep the bone in its socket, a couple of bed pillows supported my arm.
Spring had come since I’d been admitted to Cooley Dickinson, and I was alive. Kendall pushed the wheelchair close enough for me to reach out and touch an open blossom on a Japanese magnolia tree. I tenderly caressed a deep, wine-colored petal the way one might touch the soft spot on a new baby’s head. Kendall walked across the new grass to a dogwood tree, broke off a small, blossom-covered branch, and brought it back to me, laying it on top of the pillows. Looking down at the blossoms, I clamped my hand over my mouth and wept.
Sometimes, on days when my own determination was weakened, I remembered the story of Carolina Maria de Jesus, a story I’d shared with the women in creative writing workshops that I’d led. Carolina, with a second-grade education and two children to support, lived in the slums near São Paulo, Brazil, where she made her meager living by collecting and selling used scrap paper that she found by searching through that city’s trash. Believing in the power of her own words against all odds, she wrote a journal that was later published as the book Child of the Dark. That book, with the exception of the Bible, has sold more copies than any other book in Brazil’s history. I told myself that if Carolina could write herself out of a place of poverty and helplessness, then I could write myself out of a place of panic and fear.
During my month in Cooley Dickinson and two months in the Weldon Rehabilitation Hospital at Mercy Medical Center in Springfield, I wrote about any and everything. I wrote about waiting for visitors, seeing a summer-sun-lit sky through my window, my fear of falling in the bathroom, the monotonous drone of the floor waxer up and down the halls. I wrote about other patients and their visitors, the anxiety that kept me up nights and woke me early in the morning; I wrote about my roommate’s blue fish in its small cup of water, the wall of leg braces at the far end of the therapy gym, the little paper angel with its bent foot that dangled from a cord on the small TV over my bed.
I wheeled myself down the hospital corridor for my first appointment with Angela Mansolillo, my speech therapist at Weldon Rehab. I stopped abruptly at the doorway to her office. I couldn’t make myself cross the threshold into that small, windowless space. Breathe deeply, I told myself, trying to do my childbirth breathing exercise, an exercise I’d since used to calm myself before giving poetry readings. Breathe deeply. But I could hardly breathe at all. Maybe, I thought, I am suffocating; maybe fear has sucked all the air from my lungs.
“I can’t work in this room,” I blurted out.
I don’t know what Angela was thinking about the newly paralyzed, panic-stricken woman facing her from a hospital wheelchair, but she didn’t attempt to reason me out of my fears. She simply smiled warmly and assured me that she would find a space in which I would feel comfortable. The next day we met in the computer room behind the nurses’ station. The room wasn’t large, but it was flooded with light from a large window. Every day for the next two months, for thirty minutes in the morning and thirty minutes in the afternoon, I sat next to that window as I worked with Angela, learning to speak again.
Initially there were a lot of written tests, though I can remember nothing of them now except that I disliked taking them. I felt like a little child in grade school, nervous about performing well for the teacher. And I told no one that I could no longer remember the alphabet.
Speaking, I rolled my r’s, and at each syllable uttered, I spat like an actor in the No theater in Japan. Though I had spoken with a thick Southern drawl before my stroke, I now spoke with what sounded like a trace of a German accent. And my new speech was squeezed dry of emotion. It sounded flat and mechanical and was punctuated with struggle-filled hesitations. Often I would kid Angela about going on the road to give poetry readings in this style as if it were something purposefully developed for my performance. In truth I couldn’t imagine ever again giving public readings.
To lose my ability to walk was to lose all sense of safety. Who would come when I needed to be propped up in the bed so I wouldn’t choke on a sip of water, or when I needed a bedpan or a blanket? To lose use of my left arm and hand felt like a cruel amputation. But I have always been in love with the human voice, with its tonal variations, hesitations, cadences, with what it holds of the geography of one’s beginnings and of the experiences that lead one to choose the particular words through which one lives. I needed my leg. I needed my arm. I needed my hand. But in a fundamental way I was my voice. The loss of that voice felt like a diminishment of my soul.
A booklet explaining apraxia lay under a pile of books where I’d hidden it. As long as I didn’t read it, as long as I didn’t put words to what had happened to my voice, my own acknowledgment of it didn’t have to cut so deeply. In the meantime, I spent evenings in bed, pronouncing the words with which I’d had the most difficulty that day—countenance, munificent, ignorance, diminished, eloquent. I stumbled over sounds, slurred, stuttered, began again.
Six weeks after my stroke, I got the booklet out and read its definition of apraxia: “A movement planning problem involving a disruption in sequencing of voluntary movements. A transmission problem between the brain and the muscle.” Apraxia, I said aloud, allowing myself to feel the pain evoked at the sound of that word. I rolled my wheelchair to the empty dining room and parked at a table near a window. Taking out my pad and pen, I labored to write a poem expressing my struggle to find “music to unlock my damaged speech.”
One afternoon when Kendall came to visit, as she did most afternoons, she took me out for a ride around the hospital grounds. As she pushed my wheelchair around the parking lot, she began to sing the song “Side by Side.” The mood was light, and the words to the song felt poignant, funny, and true. She and I had stood side by side through one of the most difficult periods of both of our lives and were both more than a little ragged from the effort. Kendall continued to sing. Laughing, I tried to join in.
Though what I was doing could hardly be called singing, and though my words were much slower in coming out than hers and were not at all clearly spoken, they were the first words since the stroke that I was able to say without wrestling each syllable out of my mouth.
I knew that the music had made this possible. Perhaps I could get my speech back through reading rhythmical poetry. And as difficult as it was to speak, it made sense to me to practice speaking by reading what I’d loved most.
I have never returned the copy of The New Pocket Anthology of American Verse that Kendall brought when I asked her for poetry I could use in speech therapy. A 1955 edition, the book looks much older. The paper is yellowed and brittle, and some animal has chewed through the binding. The second page of Edna St. Vincent Millay’s poem “Renascence” has come loose. I couldn’t begin to say how many speech-therapy sessions began with All I could see from where I stood / Was three long mountains and a wood.
Because of the music of the poem I was able to read it aloud more easily than most things. I would read as far in its six pages of small print as my energy allowed, while Angela sat listening, helping me with pronunciation, making a list of the words with which I had the most difficulty. Then I would take the list back to my room and practice them.
There were other books of poetry from which I read. Just yesterday, when I took my copy of The Norton Anthology of Poetry from its shelf, one of Angela’s lists fell out. Reading the list—argument, tedious, chimney, revisions, decisions, scuttling—I remembered reading T. S. Eliot’s “The Love Song of J. Alfred Prufrock,” which, until my stroke, I had not read in many years. I also read Gerard Manley Hopkins’s “Pied Beauty.” Glory be to God for dappled things, I read, struggling, spitting, tripping over words until at the very end I was able get out the final Praise him with relative clarity.
Sometimes, trying to find my way in my damaged brain felt like trying to find my way in a darkened carnival fun house where nothing at all made sense. More than once I recoiled in shame, silence, and confusion after mistaking Angela’s left hand for mine as she turned a page of the book in front of me. My own hand lay in my lap, still and forgotten by my brain, my brain that had also forgotten my son’s phone number, many familiar words, what letter came after Q in the alphabet, and much of the left side of my world.
Sitting across from Angela in the small computer room next to the nurses’ station, I asked: “Will I ever be able to speak without so much effort?” I had spent half an hour reading to her, while she wrote a list of the words I had trouble with. She looked me in the eyes and answered with honesty and warmth: “I don’t know.”
One day I took Kendall’s paperback anthology outside with us. After months of work, I was going to try to read Millay’s “Renascence” aloud, and my mind could hold nothing beyond that intention. Kendall pushed my wheelchair outside and parked it facing a bench on which she seated herself. The book opened naturally to that poem into which I’d poured so much of myself. I gripped the pages between the thumb and fingers of my right hand and—after looking into Kendall’s clear blue eyes for an instant—began to read.
“All I could see from where I stood / Was three long mountains and a wood,” I began. And continued, line after line, page after page, while words from Angela’s word lists filled my mind—shrinking sight, immensity, remorse, undefined, swirled, omniscience.
“I know not how such things can be! / I breathed my soul back into me,” I read. Like Millay’s narrator, I too felt that I had tasted my own death, and the coming back. By loss of hope, I too had seen my vision limited. And I had known the heartbreaking beauty of that first spring after my stroke when I wept aloud at the sight of a bough of dogwood blossoms that Kendall broke from the tree and placed on my lap like a prayer. The world stands out on either side, I read. No wider than the heart is wide. Tears were streaming down Kendall’s face. I read the last lines and took a deep breath. The poem was over.
I was still in a wheelchair. My left leg was still paralyzed. I did not have enough balance to stand without help. My left arm hung limp at my side. I was unable to move my hand. But I could read poetry aloud again. Not smoothly, not with the inflection that I wanted, not rapidly enough, and the words weren’t always clear. But I had just read all six pages of “Renascence” aloud to Kendall. I felt as if I had been given wings.
It was early morning, just after breakfast and medications. I waited with other patients in wheelchairs lined up at the door of the therapy gym, some with artificial limbs laid across their laps. Others were paralyzed, mouths wordless and twisted. One old man stared out coldly. He would never look anyone in the eyes again. One young woman could no longer hold up her head. The man with one eye sewn shut talked to the man with a stump where his right hand had been. This could be hell. Or the purgatory of an unkind god. Or simply life. No more extraordinary than oceans. Or a single crab crawling across the sand. Or the last labored breath of the man in 402, his IV and oxygen disconnected, the day nurse coming on duty.
Soon the therapists arrived. Each gripped the handles of a wheelchair and pushed her patient to an exercise mat, a stationary bicycle, parallel bars, or a table filled with objects used in exercises to improve coordination. My therapist pushed me to the standing box. She helped me up from my wheelchair and into the box, where I stood as she locked me in. She told me that she’d be back in five minutes to release me and help me back into my wheelchair. I stood locked in the standing box, watching her walk away.
The standing box was exactly that—a tall, narrow box just large enough for me to stand in without room to fall. It came up to just above my waist. My paralyzed hand dangled at my side, while my functioning right hand steadied me in the box. I’d been locked in it in order to begin to regain the balance that the stroke took away. Here I could observe the other patients. Here I could stand without fear of falling. No one said a word. The room was filled with the thick silence of people whose damaged brains and bodies had no energy left for words as we struggled to do our work.
A gray-haired woman seated at a table moved a stack of cardboard cones one by one from her left side to her right, then back again. Her trembling hand moved like a great iron claw, mechanical and slow. A man in a hospital gown and slippers pushed pegs into a pegboard, took them out again. Another woman raised and lowered her left arm, raised and lowered her left arm. Everything here was done in slow motion and was repeated like an action repeated forever on a factory assembly line somewhere where there was no visible end product. Theater of the absurd. The phrase came to mind, and I searched my memories of the sixties to try to remember a play I saw then. But I couldn’t recall the play, only the feelings of disorientation and despair that it evoked.
The therapist said I must stand here a full five minutes.
The far wall was a pegboard hung with leg braces and plastic legs, quad canes and straight canes, walkers. Dust motes floated in the slant of afternoon sun that fell through the window, and I was mesmerized by the motion of these thousands and thousands of particles. Watching them, I remembered standing in my grandfather’s bedroom when I was young. The window shade was half-closed and, except for one slant of sun, my grandfather’s room was dark. I stood there, stilled by amazement at my discovery of the dust particles. Looking at them, I lost all sense of time. It was as if they would be forever suspended there, as I would be left forever standing on the slanting floor in that old house with its wallpaper roses and cobwebs.
“Margaret,” the therapist said, and I jumped, startled at the sound of my own name calling me back from childhood. “Margaret. Your five minutes are up,” she said, and unlocked the back of the box.
I turned around carefully and took her outstretched hand.
Gripping the bar to my right, I walked slowly, swinging my rigid left leg to the side while my spastic left arm drew itself up hard against my chest, hand knotted into a tight fist. Each step required my total concentrated attention. But I could finally walk the full length of the parallel bars that stood at the far end of the therapy gym. Now Loire, my physical therapist, was telling me that it was time to try walking with a cane. I felt terrified.
Immediately after she dismissed me, I wheeled myself to the office of Dr. Jones, the music therapist with whom I’d worked to control the anxiety that woke me mornings and kept me from falling asleep nights. Dr. Jones had bright, kind eyes and a soothing voice. She also had a pleasant office—photographs of flowers on the wall, plants in the window, music and meditation tapes, and a comfortable reclining chair. Being in her office brought relief from the impersonality of the ward’s gym, dining room, nurses’ station, and the long hall that someone was forever polishing.
Dr. Jones steadied me as I moved from my wheelchair to the reclining chair. Then she put a tape in the tape deck and instructed me to close my eyes and breathe deeply. I had many times led writing groups in similar guided relaxation meditations. It felt good to follow someone else’s guidance. I began to relax.
Was the music Bach? Vivaldi? I seem to remember something baroque. As the tape played, Dr. Jones asked me to tell her what images I saw in my mind. The first images were vague and fleeting. Then I saw an image of me in the sky, sitting in Dr. Jones’s reclining chair. As I watched myself floating there, the contours of the chair began to soften and blur until it became a chair of clouds. Then the clouds themselves began to shape themselves into hands. The hands began to tip me gently to one side, then the other, back and forth, up and down. They dipped, turned, and tossed me. As they did, the words benevolent hands came into my mind. Benevolent hands. With the words came the knowledge that I would not fall. I would not fall because the hands wouldn’t let me. Then, from somewhere above my head, the sky opened and streamers in bright colors—red, blue, yellow, purple, green, orange, pink—cascaded over me. I felt washed in a sense of pure joy.
The next day I took my first steps with a cane.
John Elder and Mary came for me one bright Sunday afternoon after I was finally permitted to leave the hospital for brief periods. John Elder pushed me down the hall to the elevator, and we took it to the first floor. Then he pushed me down another hall and out into the parking lot. Mary transferred me to the car as she had been taught to do. John Elder folded the heavy hospital wheelchair and put it in the trunk. Then he backed the car up and headed north to South Hadley to a restaurant for lunch.
Because the left side of my face was paralyzed, I could not eat without having food spill out of the left side of my mouth as I chewed. In the hospital-ward dining room, I was not self-conscious about the way I ate. I felt more fortunate than patients who spilled even more food than I did, or than the woman who drooled all the time. Especially I felt grateful that I was not like the man who could hardly swallow at all.
I was determined that I would learn to accept my inability to eat in a socially acceptable manner. I would learn to be as much at ease with it as possible. And I would not let it keep me from going to restaurants. And I would simply take one of the large hospital bibs with me. Which is what I did that Sunday.
Mary checked to be sure the restaurant had a handicapped-accessible bathroom that would accommodate my wheelchair. Then she transferred me from the car to the wheelchair. John Elder pushed me to a table outside in the sun, and we ordered lunch.
It was wonderful to be away from the hospital with its hospital food, its rigid regime of medication and mealtimes, blood tests and weight checks, its overworked, rushed, and pressured staff. I was relieved to be away from constant reminders that I was a stroke survivor. My condition was always being mirrored back to me by the other patients with paralyzed limbs and damaged speech, by the sight everywhere of braces, walkers, canes, wheelchairs. I knew I was a stroke survivor. I knew also that I was badly disabled. What I needed was to be reminded strongly that I was still myself. I still had a life. And that somehow, I would be able to find a way to live it.
I squeezed lemon juice on my broiled fish.
My son looked at me. Then he lowered his eyes. Even though I could not see the expression on his heavily bearded face, or in his lowered eyes, I knew that my being alive mattered to him. But he was silent as Mary and I talked.
After lunch he drove us to the Summit House, an old hotel on Mount Holyoke between Hadley and South Hadley. Jenny Lind stayed there when she sang at the Academy of Music in Northampton. Emily Dickinson came from Amherst by carriage to hear her. Abraham Lincoln was said to have once stayed there too. The road up the mountain ran just above the dairy farm on which I had lived with my husband and sons for a year before we bought our house in Shutesbury. Below us I saw the hill John Elder sledded down that first winter in New England, and the driveway in which he’d stood, head bent over the open hood of his car while his great-uncle Bill Beattie first explained the workings of a car engine.
From the road I could see the apple tree in the backyard where year-old Christopher had stood at the fence feeding apples to the white-and-black cows that grazed there. And I remembered the many apple pies I baked and stored in the large freezer on the back porch.
John drank heavily by then. I struggled with depression. John and I had both brought to the marriage our own family histories, our own damaged childhoods. And it was all that history into which our sons were born and in which they grew up. The price for them was enormous. John Elder struggled with his own unhappiness over his attempts to relate to his peers. I searched for help for him, for myself, for us. There was a string of ineffectual social workers and family therapists. But it was John Elder’s own inner resources that saved him. Nine years old, he played with his trains and Erector set. He read the Hardy Boys books, National Geographic, the Encyclopaedia Britannica. He ran with his dog, rode his bicycle, played with the farmer’s son from next door. Sometimes, in his heavy leather boots and carrying his rock pick, he climbed the mountain.
Now the three of us—John Elder, Mary, and I—were climbing the mountain together in John Elder’s car, the incline sharp, woods on either side of us.
At the top of the mountain, John Elder parked in the lot just below the Summit House, took my wheelchair out of the trunk, and unfolded it. Mary transferred me from the car. John Elder pushed the wheelchair up the hill until the hill became too steep. Then he turned the chair around and dragged it up the grassy incline beyond the Summit House, while Mary ran along behind it to catch me if I started to fall. Afraid of losing my precarious balance, I gripped the wheelchair armrest hard and sucked in my breath. Then my son dragged the wheelchair onto a large flat rock and locked its brakes.
I hadn’t asked him where he’d intended to take me when he’d picked me up for this first outing with Mary and him since the stroke. Nor did I ask why he had chosen to take me to the mountain. But the place was exactly right. Sitting there on that rock high above the valley, my heart still beating rapidly after the excitement of the trip up, I knew it.
Below us, the Connecticut River twisted its way through the valley, the afternoon sun flashing off it. Below us also were the places in which my son, my daughter-in-law, and I had lived for so many years. The farmhouse stood at the base of the mountain, though we could not see it from the rock. To our south lay Granby, where, before her parents’ divorce, Mary had grown up. Across the river was Mount Tom, where Mary’s brother Dan had died of exposure, and behind us was the road on which her brother Paul had died in a traffic accident.
To the north, the skyscraper library and the residential towers of the University of Massachusetts rose in stark opposition to the pastoral landscape. It was there that John Elder’s father taught, and where I had gotten my MFA in creative writing. It was there that John Elder had spent so many hours of his adolescence learning the complex workings of the computer, and where Mary had later studied archaeology.
Farther north still, in the Shutesbury woods, was the house in which we’d lived for twelve years before the divorce. John Elder had hiked and camped in the woods there, and in the yard there he’d played in the snow with his brother, building snow forts and snowmen; lady slippers and bluets mingled there with used-car parts as John Elder built his first car, which he drove over old logging trails near the house. Chris had played in his wing-shaped tree house in those woods, and I’d walked there, learning the names of wildflowers and mushrooms. In those woods, my husband had chopped and stacked the firewood.
It was in that house that I’d answered the phone to John Elder’s numbed voice, saying, “Can someone pick me up at the hospital? I’ve just had my nose sewn back on.” And all that evening long, upset and frightened about his brother’s motorcycle accident, Chris had scrubbed at the blood that covered his brother’s black leather jacket. It was all he could do.
It was in that house, when Chris was in the second grade, that he began to write poetry and short stories.
It was in the house in the Shutesbury woods that John Elder, when he was in his teens, began to build audio equipment for local bands. He also created light shows with strobe lights and worked with his oscilloscope. And as always, he read. It was in that house that I painted paintings, knitted mittens and caps, cleaned and cooked, wept and fought. At night, in front of the living room fireplace, I wrote long letters to my friend Pat King in Turkey, in London, in Houston. It was in that house that we lived, locked together in need, fear, pain, anger, despair, hope. And in love.
But that bright Sunday afternoon, the house was below us in the far distance. We had survived. As we sat on that large rock just beyond the Summit House, that in itself felt like enough.
My old friend Pat King had come from Houston to be with me in rehab. I’d spent the day in speech, physical, and occupational therapy. It felt good to have Pat there beside me reading as I lay writing in my hospital bed. It felt good to see her familiar freckled arm and hand holding the book, her auburn hair still catching the light even though—as she is quick to say—the color has come from a bottle for years now. The effort to talk with her had exhausted me, just as seeing my weak, paralyzed body had exhausted her. Not only seeing me, but seeing the many other patients with their varying degrees of disability and suffering.
Why was it my role in Pat’s life to be the vehicle through which she saw so much pain?
The last time she had been in Massachusetts, she had gone with me to the prison in Lancaster to see a performance by inmates who had participated in the theater/writing workshop that I co-taught with my friend Sheryl.
The women in the workshop came from diverse backgrounds. They were black, white, and Puerto Rican. Two of them could neither read nor write. One had a graduate degree. Some had grown up in middle-class environments, while others came from poverty-riddled neighborhoods. One woman had lived for a time with her children in the New York City subway. One woman with no place to live had searched city dumpsters for scraps of food. The women were serving time for a variety of reasons: possession of drugs, murder, embezzlement, and armed robbery.
We had spent months sharing life stories, discussing issues, expressing emotions. By the time of the performance, we had stripped away many of our preconceptions and expectations, and much of the prejudice and fear had dissolved as the women had come together supporting one another.
“I’m reaching for my life,” Zeneida de Jesus had said, speaking for all of us, and not yet knowing that she was dying of AIDS.
Years of writing letters to Pat had strengthened me and helped me to see more clearly. Through writing to Pat, I had been able to face the end of my marriage. More than anyone else, Pat had played an intimate role in my struggle to come to words in the first place. Now, when words were so very difficult to speak aloud, and when I needed a strengthened connection with and renewed faith in the power of my words, it felt good and right to have her by my side even for a little while. At a time when I saw a difficult and lonely future, more frightening than any I’d ever imagined, I knew that if I could focus only on Pat’s visit, I could allow myself to breathe, and within my new limitations, to simply be.
Sometimes Pat walked with me just outside the hospital building where I held on to the handrail along the sidewalk while taking slow, unsteady steps. One afternoon we sat outside and talked, she on a bench, me in my wheelchair. Only when the conversation was finished did Pat point out that for those few minutes, my speech had sounded almost normal.
It was true. I’d been spending two sessions a day working with my speech therapist and not once had speech come easily, or with the clarity of that conversation with Pat.
What was the difference? With Pat I was not conscious of the mechanics of speaking but was intensely focused on communication. This unselfconsciousness certainly contributed to the diminishment of the nervous anticipation that made me more spastic, making speech even more difficult. But there had been many other occasions since my stroke when communication had been my primary focus.
Perhaps relationships themselves have specific locations in the brain. Perhaps my relationship with Pat was located in a healthy and healing area, and in relating to Pat I was able to call on whatever was healing there. And who can say what role emotions play in the functioning and healing of the brain? I can only say that while talking with Pat, I forgot that I could not speak normally; I only knew that I was talking with my friend whom I loved deeply and who had loved and accepted me for many years. And for a few minutes one afternoon with Pat, I spoke almost as if I’d never had a stroke.