The Long Journey Home (45 page)

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.

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.

Later Anne was responsible for having a wheelchair ramp built for me. It returned to me a little of my independence by enabling me to roll my wheelchair out of my apartment by myself.

In time I walked across the bridge with the series of remarkable women who served as my PCAs (personal-care attendants) and became my friends. We walked across the bridge in spring, when the river was full from the melted snow, and in summer, when the river was low and slow-moving and small boys stood on the bridge with tackle boxes and fishing poles, fish lines dangling over the railing. We walked across the bridge in fall, when gold leaves floated on the water and bones of trees huddled on the riverbank, anticipating winter. We walked in winter, when the surface of the river froze, and the wind was hard and cold, and I wore holes in my right mitten from its many trips up and down the bridge rail. And all the while I walked, Hart Crane’s words repeated themselves in my mind—
The very idea of a bridge … is an act of faith
.

Sometime after my stroke Chris told me that I was his ruined mother and that he wished I’d died, that it would have been easier for him. It was true that I could no longer walk or use my left arm and hand, and my balance was poor. My speech had improved, though it was still difficult for people to understand me. And to speak at all required great effort.

But I was exceedingly glad to be alive.

And I could still write.

One day I emailed one of my new poems to Chris. He called as soon as he received it. “You still have your same mind,” he said with amazement. “I love that poem.”

Poetry always mattered to Chris. Even as a little boy he wrote poetry.
But once he was an adult working in the advertising world, he stopped. And he drank heavily. However, there was a brief period sometime in the 1990s, after he moved to New York City, when he was sober. During that time, he wrote more than two hundred poems. Even as first drafts those poems were amazing. I typed all of them for him as a way of showing my support, but I don’t know if my doing this mattered to him, or if he ever saw what incredible poetry he’d written. By that time he’d begun to write prose.

It was sometime during the years he worked in advertising in New York that I began to write my memoir, much of which I sent to him through email or read to him over the phone. We would continue to exchange and critique each other’s work for nearly twenty years.

But he was drinking again and often woke me in the middle of the night.

“Do you know how difficult it is to write in your shadow?” he would yell. Then he would spew out his anger to me about his adolescence after the divorce. He was especially angry that I hadn’t made enough money to maintain the lifestyle we had when John and I were married.

I listened. I was still under the influence of some of Dr. Turcotte’s ideas, especially that expressing anger was a part of the process of healing. If expressing anger was good for Chris, then I was determined to listen. But it exhausted me emotionally and physically. I woke many mornings after his calls with little energy to start the day.

Sometime during Chris’s years in New York City, I gave a reading at the Northampton Center for the Arts. Chris was on vacation on Cape Cod at the time and both pleased and surprised me by hiring a pilot to fly him to Northampton for the reading. I had seen him only two or three times since the stroke, and those visits had been brief.

After the reading, he came up to me and expressed great enthusiasm. He was surprised that despite my physical limitations, I could still give an effective poetry reading. “I never realized until tonight that I got my stage presence from you,” he said excitedly. “And you still have it!”

Seeing Chris was the highlight of the evening for me. I told him I would love to go someplace and visit with him for a while. He responded quickly, saying that the pilot was waiting to fly him back to the Cape. As we were talking, my new therapist surprised me by coming up and introducing herself to him. She told him that he must never again disturb my sleep by calling in the middle of the night. She explained that I needed my rest and his disruptions were a threat to my health.

I remember no more of that incident. Did she say anything else? Did he say anything to her? Did she just make the statement and leave? I have no idea.

What I do remember is feeling shocked at what seemed to me to be inappropriate behavior on her part. Inappropriate or not, after her brief confrontation with Chris, he never again woke me at night with a drunken explosion of rage, and for that I was deeply grateful.

“Your new brain,” Julia Chevan, my physical therapist, said, referring to my stroke-damaged brain. We were walking around the therapy gym at Cooley Dickinson Hospital, where I went three times a week. My steps were hesitant, slow.
My new brain
, I repeated to myself, and thought of an article I’d just read in
Omni
magazine called “Catastrophes That Shaped the Earth.” The article was illustrated by images of floods, earthquakes, and volcanoes.
How long will it take me to learn the territory of this new brain?
I asked myself.

I was afraid of my new brain. Unpredictably and often, the connection between it and my left leg seemed to become momentarily severed, causing my leg to suddenly stop moving, throwing me dangerously off balance. And always my brain was filled with noise that sounded like static from a poorly tuned radio, static that continued for over a year after my stroke. It made thinking difficult. But since
the stroke, the most frightening thing about my new and unpredictable brain had been the grand mal seizure that I had recently experienced. It happened almost ten months after the stroke.

Suddenly and without warning, my body had begun to twist slowly and uncontrollably to my right. I was sitting in my wheelchair at my writing table in the kitchen. Marilyn Zelwian, my friend and PCA, stood with her back to me, washing dishes. As my body began to twist, I saw the fingers on my right hand begin to curl toward the palm the way the fingers on my spastic left hand had curled since the stroke.

“Marilyn,” I started to shout, but my mouth contorted wordlessly as my head twisted itself on my neck the way a child might twist the head on a doll into some impossible position.

My brain trembled against my skull.

With a shock of terror, I felt like I was being sucked up in a giant, powerful vacuum, leaving my body through the top of my head.

“No, Margaret!” Marilyn cried out as I lost consciousness.

She told me later that I threw my head back and rolled my eyes upward until only the whites showed. All color drained from my face, while bloody saliva ran from the corners of my mouth. My body shook violently and then went limp.

Marilyn thought I had suffered another stroke. In fact, I’d had a grand mal seizure caused, my doctor suspected, by scar tissue from the stroke. An EEG showed electrical activity indicating the probability of future seizures, for which my doctor prescribed the anticonvulsive drug Dilantin. I’d been taking it for two weeks, and all visible effects of the seizure had disappeared.

Except for Julia’s comments and instructions, we walked silently. Walking—as always since the stroke—required my total attention. And since I wasn’t walking between the parallel bars with their relative safety, I walked close to the wall for security.

Suddenly I lost my balance and began to fall against the wall to my left. As Julia grabbed my right arm, I caught myself, regaining my balance. I gripped my cane tightly. Remembering the near fall, and
anticipating a future fall, I began to walk again, my spastic side stiff with fear.

Which increased the possibility of an accident.

I looked down at my feet. How could I focus entirely on the present step without a thought given to the last step or the next? Our great spiritual teachers have always tried to teach us to live wholly in the present moment. How long would it take me to learn to do that with my stroke-damaged brain?

How was I going to learn to walk confidently with my cane and not near a wall for security again?

I was twelve years old when I read the story of a boy who wanted more than anything else to be able to pitch a baseball. He had been born with cerebral palsy that caused him to be spastic. For many years he worked toward his goal of throwing the baseball, years of hard and finely focused effort. And he succeeded—he was finally able to pitch a baseball.

He wrote that while other people might be able to pitch with more accuracy and ease, he felt certain that no one pitched with greater joy. Most people pitched the ball as an almost unconscious act. He, on the other hand, was almost totally conscious of what he was doing. I loved that story. I thought that it would be wonderful to be so mindful of what one was doing. To be that aware.

Looking down at my feet in the gym with Julia at the end of our session that day, I remembered that story. It had been nearly a year since the stroke, and my brain was still unable to get my leg to do what I wanted it to do. Now Julia was telling me that she could no longer work with me. I was not showing enough visible progress to satisfy the insurance company. I went home, doubting my ability to walk again with any reasonable degree of skill and confidence.

To fight my new doubt, and to build something to stand in place of the loss of therapy with Julia, I intensified my efforts to walk across the Iron Bridge. As always when my PCAs and I walked, I thought of the words of Hart Crane:
The very idea of a bridge … is an act of faith
.

In the summer of 1992, when I went back to the hospital to work with Barbara Jenkins, my speech therapist, I met Julia in the hall. She said that she could see that my walking had improved since she’d last worked with me; she thought she might once again be able to help. Would I like her to give me a reevaluation?

I felt elated.

While out in my wheelchair almost two years before, I’d met a young woman walking with a brace on one leg. Our visible disabilities drew us together. She told me that a car accident was responsible for her paralysis. I noticed that her brace was hinged at the ankle, where my own brace was rigid. “If it’s ever possible,” she said, “try to get a hinged brace like mine. It feels so much better to walk in than the one you have. Much more like normal walking.”

I filed this information away. I intended to have such a brace someday. With Julia’s offer to reevaluate my walking, I saw the opportunity to discuss the possibility. With renewed hope, I set a time to meet with her.

At my appointment, Julia pointed out that I was using my leg more the way one might use a wooden leg than one made of flesh and bone and blood. She noted that my ankle was so stiff it was almost immovable.
But I was able to get from one place to another
, I comforted myself.

However, after I’d spent years walking that way, my knee was beginning to cause me problems, and I often had backaches. These conditions could only become more problematical as I continued to walk this way.

No, Julia said. I could not have a hinged brace. There wasn’t enough flexibility in my ankle to make that possible. But if I could regain some flexibility, if I could make some progress …

If
. The word meant hope, and I clung to it.

Julia was going to be away for the month of August. If, when she returned, I was able to show her a more flexible ankle, if I was able to shift my weight more to my left side, if I was able to master the exercises that she was going to give me, then we would meet with
Frank Twyeffort, who made prosthetic devices for the hospital, and we would talk about the possibility of a hinged brace.

Julia also agreed to meet with Susan and Ellen, two of my PCAs, and teach them how to help with the exercises that she was going to give me. She would also make a video of the two of us doing the exercises while she explained for the camera what she was doing. Both my helpers and I would be able to refer to the film.

“The theme for the summer,” Julia announced when we met again to go over the exercises, one of which she told me to do about a million times while she was away, “is symmetry.” But how was I going to be able to develop symmetry when half of my body was so deadened to feeling?

Almost immediately Susan left for the Midwest to visit family. She was gone for over two weeks, leaving Ellen and me alone together to struggle with finding ways to do the exercises. I found that my brain could translate some verbal instructions to action more quickly and effectively than others. Extremely sensitive to physical cues, I had grown accustomed to working with Julia, who used the lightest, most articulate touch I’d known. Now I was turning to Ellen to do with me what a gifted and professionally trained therapist had done. And what we were trying to do felt more difficult than anything I’d done since my early efforts at walking. I was easily tired and frustrated. Ellen was patient and acutely observant. With each meeting she grew more confident, directive, and effective than the last. By the time Susan returned from her trip, Ellen and I had developed a successful way of working together. She taught Susan what she’d learned. Ellen or Susan worked with me five days a week.