The Long Journey Home

by Margaret Robison

  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.

  IX

  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.

  X

  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 th
e 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.

  XI

  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.

  Chapter Twenty-five

  I

  1989

  IN AUGUST, AFTER MORE THAN THREE MONTHS IN THE HOSPITAL AND rehab, I was discharged. My daughter-in-law, Mary, drove me home on Friday and spent the weekend with me, working to make the apartment accessible. She put a grab bar next to the toilet, attached a shower hose to the bathtub faucet, and set up a bath bench in the tub. She put small mirrors low over the kitchen sink and bathroom washbasin so that I could see into them while seated in my wheelchair. She hammered an enormous nail through a cutting board and out the other side, making a spike on which to hold an onion or apple or whatever fruit or vegetable I might want to cut. She took me shopping for groceries, unpacked my things from the hospital. Most important, she was there, supporting me at what was one of the loneliest and most frightening times of my life.

  It was also a time of great relief.

  I was home.

  But I’d lost my left side someplace in my stroke-damaged brain. And without my left side, everything around me felt both familiar and strange.

  How was I going to live?

  After Mary left, my friend Sally stayed with me for a while. She called social agencies and set up temporary help for me. Soon I was able to get help from Stavros, a national agency for independen
t living. Through Stavros, I was fortunate to choose my own helpers, who turned out to be marvelous women, and all involved in the arts. Together we worked at my rehabilitation, and—in every way they could—they worked to make my life one of quality.

  As I’d done in the hospital, I began each day by writing before one or another of my helpers arrived. I woke early and sat at my table in my wheelchair facing a window overlooking the river. Most of the poetry I wrote was about experiences related to the stroke, and about the process of adjusting to life in a paralyzed body.

  White Caps

  White caps on the river.

  Wind all day. Hard.

  You’ve been dead three years.

  Still I write you letters in my head.

  And dream some nights of us together.

  Indian summer’s gone.

  When I crossed the river bridge at dawn

  a fine powder of snow was coming down.

  My aide pushed my wheelchair

  while I gripped the handrail. Mother,

  I’m learning to walk again.

  II

  I was walking across the Iron Bridge with my friend Anne Plunkett as part of my therapy in learning to walk again when I first noticed the many spiderwebs hanging between the sections of iron latticework supporting the handrail. In the cold air of early morning, dew sparkled on the webs, making them look like exquisite and delicate creations of spun glass. Walking so slowly gave me the gift of seeing many beautiful things that I’d not noticed in my rapid walks across the bridge before the stroke.