The Long Journey Home (46 page)

Afraid that I had not accomplished what was necessary for me to be able to have a hinged brace, I put off making an appointment with Julia. I kept telling myself that I would give myself one more day of exercise before calling her.

I finally made the call in October and was shocked to find that Julia no longer worked at the hospital but had accepted a job at a
nearby college teaching other therapists. However, she had left word at the hospital arranging to meet with Frank and me. I was relieved and grateful.

Frank arrived first for the appointment. While I sat on a high exercise table, legs dangling, he removed my left shoe and my brace and examined my foot and ankle. He rotated my foot. Then, pressing against my sole, he forcefully bent my foot back toward the shin. There was a new flexibility in my ankle. Perhaps I was going to be able to get the hinged brace after all.

When Julia saw what I’d been able to accomplish over the summer, she was pleased. I sat in quiet celebration while she and Frank talked about the design of the new brace.

Then Frank looked at me. “Your work is just beginning,” he said, fastening the Velcro strap on my old brace and slipping my shoe on. “From now on, you’ll have to do your exercises daily. You have to look at it,” he said, fastening my shoe and pulling my pant leg over my brace, “as if you’re going to be in school for the rest of your life, with no weekends off.”

But I will be able to walk bending my ankle
, I thought.

In the early weeks following my stroke, Julia and Patricia Jung had both worked with me. Now Patricia agreed to take Julia’s place as my therapist. My sense of balance was still so poor that I felt like I might topple over or fall to one side. Even getting up from the exercise table by leaning forward and lifting my buttocks from the table as instructed not only exhausted but frightened me. I still felt relatively safe only between the parallel bars.

But after I finished the exercises in the treatment room, Patricia announced that I was not going to walk in the gym at all. Using my cane as support, I was going to walk in the hall. I had become too dependent on the parallel bars for my sense of safety. Patricia intended to help me move away from that dependency. Walking with me toward the hall, she explained that she believed one learns more effectively if one is not always able to anticipate what’s coming next.

I knew Patricia was right. But I was tired of working so hard. Wearing the hinged brace made me feel frighteningly insecure when I walked. To adapt to it was going to require much more time and effort than I’d anticipated. Easing myself off the exercise table and making my way across the treatment room, I remembered again the story of the boy who had worked so long and hard to be able to throw a baseball. But I wasn’t a young boy; I was a woman in late middle age.

I looked down the long expanse of carpet leading to the waiting room. I thought of Rilke’s words:
If the angel deigns to come, it will be because you have convinced him, not by tears, but by your humble resolve to be always beginning
.

To be always beginning. Yes. The stroke had obliterated my ability to take an ordinary step. Communication between my left leg and brain was no longer the easy, unconscious thing it had been. My brain was struggling to find new ways to reroute messages, to create a new communications system. I remembered Julia’s phrase:
new brain
. I would learn to live with this new brain, and to live in the present moment as well.

Each slow step was teaching me how.

My grandson, Jack, was born April 12, 1990, at Cooley Dickinson Hospital. As soon as I heard that Mary was pregnant, I was more determined than ever to regain use of my paralyzed left arm and hand so I could hold my grandchild.

Sharlette Risely, my occupational therapist, was so intensely focused on helping me achieve my goal that she sometimes dreamed at night about ways to help me. But despite our efforts, my hand lay limp on the table in the therapy room. And when I stood, my arm dangled useless by my side.

Even so, the day after Jack was born, John Elder laid him against
my chest, where, with the help of my right arm and hand, I cradled him for over an hour while he slept.

In September of that same year Mary started studying at the university for her master’s degree in anthropology. For the entire school year I, with help, kept Jack for two days each week while Mary attended classes. I delighted in watching him playing and sleeping in his playpen on my kitchen floor. I fed him and even learned to change his clothes with one hand.

When the weather was pleasant one of my helpers pushed me around town in my wheelchair while I held Jack on my lap. We went to the bank and grocery store, through town and across the Iron Bridge that spans the Deerfield River. Wherever we went people were friendly to Jack, who, in time, learned to respond to their waves by waving back. When he was around eleven months old he began to hold my hand and walk beside my wheelchair for brief periods.

While Mary arranged things on the dining table in their home for a party for Jack’s first birthday, he pulled himself up and stood holding on to a table leg beside her. Sitting on the couch across the room, I called his name. To my surprise he let go of the table leg and walked to me.

Jack is now a brilliant and handsome young college student studying organic chemistry. When he comes to see me, he pushes me across the Bridge of Flowers and around town in my wheelchair.

After twenty-one years, my left hand still lies limp in my lap, but I am exceedingly grateful to have lived long enough to have watched my grandson grow from the small boy who walked independently on his first birthday to the fine young man he has become.

After a year of working to regain my ability to speak, I was ready to give a poetry reading at Cooley Dickinson. It was important to me to give the staff at least a glimpse of what the experience of recovering
from a stroke was like from a patient’s point of view, and I had written many poems with that focus. It was also time for me to reclaim my role as a public speaker.

Barbara Jenkins, my speech therapist for the five weeks I was at Cooley Dickinson just after the stroke and again after my five months at Weldon Rehab in Springfield, was working with me. Barbara, a creative writer herself, did videos of me reading my poetry. Then together we watched each video. Sometimes simply hearing a mistake was enough for me to be able to correct myself. Barbara analyzed the mistakes I couldn’t correct myself. Sometimes she wrote phonetic spelling over a word that was causing me difficulty. Other times she had to call on her own creativity to find ways to help me pronounce difficult words. For instance, she drew a little pear beside the word
paralyzed
.

Speaking had become much easier over the year, but reading poetry or prose was still extremely difficult for me, and I spent many hours practicing the poems I planned to read at the hospital. By the day of the reading I felt confident that I could get through the reading without an excessive amount of stumbling. Barbara introduced me, emphasizing the difficulty I had had to overcome and the hard work I’d done to be able to read with clarity and expression after having almost lost my ability to speak at all after the stroke.

Rising from my wheelchair to face the audience of familiar faces, I felt like I was coming home to myself.

C
HRIS HAD BROKEN UP WITH HIS PARTNER AND MOVED TO
N
EW
Y
ORK
when he began to write his memoir. He often commented that hearing or reading sections from mine was very helpful in writing his. He called and emailed me frequently to ask questions about his childhood, and about the years covered in what became his book
Running with Scissors
. I answered everything I could remember.

The more he wrote, the less he shared.

As he completed his book, he distanced himself from me. Shortly before publishing it, he asked if I was going to sue him. The question surprised me. I assured him I would never sue him, that he was my son whom I loved and would always love with all my heart. But I understood why he had asked the question when I read
Running with Scissors
.

I was shocked and brokenhearted. I went through a gamut of emotions. Even as I nursed deeply hurt feelings and anger toward Chris, I felt compassion for him knowing the pain from which his dark humor arose. But I also struggled with my ego, which wanted to defend me.

Before newspapers began contacting me with questions—as they
did almost immediately after the book’s release—I knew I had to make a decision about how I was going to respond to Chris’s book publicly. I decided to say as little as possible, and I declined requests for interviews.

Privately, I went through a period of prayer and meditation. I also went through much emotional struggling and journaling. The following are excerpts from my journal of that period.

I looked forward to my weekly Tuesday-afternoon massage. My masseur, Brian, had worked for years to relieve the spasticity in my left side. Lying on the massage table he set up in my kitchen, I had relaxed when, from the radio in the background, I heard the announcer saying that
All Things Considered
was brought to us by this
foundation and that foundation and “by Augusten Burroughs, author of
Running with Scissors
, a book about …”

My thoughts spun in shock, giving me a dizzy feeling that blurred the rest of the sentence.

“Was that your son he was talking about?” Brian asked.

“I wasn’t listening,” I lied.

At the moment of that radio announcement, I felt all safety for me in my village drain away. Though Chris had changed the names of the people in his book, he left no room for doubt about his characters’ identities. His egotistical mother—according to his book—who wrote “mediocre” poetry, lived in an apartment by a river in a small town near the Massachusetts and New Hampshire border, and was paralyzed on one side of her body by a stroke.

After thirteen years of walking across the river bridge, or beside the falls, holding the handrail while one helper or another pushed my wheelchair, I was one of the most consistently visible people in town. Strangers have stopped to tell me that watching me inspired them. Townspeople often said that when they had something difficult to face, they would think of me to give them courage.
What will these people think of me now?
I thought.
Or others who read the book, or read about it?
My town was filled with writers and writers’ groups.
The New York Times Book Review
was common reading here in this small village tucked between gentle hills, with a river flowing through it.

I thought of standing with Bubba as we took the cards from the wreaths and bouquets of flowers at his infant son’s grave more than thirty-three years earlier. Years earlier, Bubba’s baby girl had been killed in a collision with a truck on a rain-slicked highway when she was only nine months old. Now his son had just been buried beside her.

The wind blew a wreath of flowers to the ground. Bubba bent and placed the wreath upright again. Then he stood staring at the carpet of artificial grass covering the freshly dug grave.

I looked down at his shoes, shined to a high gloss, black shoes that had become a black mirror reflecting the gold of chrysanthemums.

“If God is punishing me, surely this is enough,” Bubba had said. His voice was leaden—a dirge without music.

I’d wanted to hug him and say, “No. God is
not
punishing you. I don’t know why these things are happening to you, but I don’t believe for a minute that God is punishing you.” But our relationship didn’t allow for such intimacy even at such a moment, so I just stood silently there with him, my eyes riveted on the gold flowers reflected in his shoes.

If Chris is punishing me, surely this is enough
. That was the thought that flashed through my mind, bringing back to consciousness my brother’s words spoken so many years before. But I wasn’t facing a tragedy like Bubba had experienced. I had two sons, alive and healthy. Yet I had lost the relationship with Chris that had mattered so much to me. I was left with unbearable loss and grief.

In
The Washington Post
Chris was quoted as saying about me: “She thinks she’s famous. Everything to her is about her. She wonders what she’s going to tell her ‘press’ when they call about the book. I’m like, ‘What press?’ ”

Could Chris hate me so much? I sent him an email saying that I’d read the
Washington Post
article. I told him that I loved him and would always love him. He replied by email saying that it was great that his book had gotten two full pages in the
Post
. He added that the same thing was going to happen soon in the
L.A. Times, The New York Times
, and the
Boston Herald
.