Mermaid: A Memoir of Resilience (28 page)

“Really?” she said. I heard her gulp. Was that a martini or fright? “Well, what’s the cure?”

“None. No cure. They die. It’s a painful death, and they die in their infancy.”

Silence.

“You there?”

“I can’t hear this,” she said in a whisper. “It’s awful.”

“It is awful. They die, Mom. But doctors can detect this disease before the baby is born. Let’s say you were the mother, would you abort?”

“No!”

“Mom, the baby is going to die.” I hear in my voice that I’ve gone beyond the hypothetical issue, but I can’t stop myself. “
Your
baby is going to know nothing but pain. And you’re telling me you won’t abort?”

“Listen to me,” she said in a raspy voice. “You have got to get out of there. Why are you doing this? What is happening to you?”

I started sobbing.

“Oh, no,” she said. “Another kid in tears. Why do we let you kids go away? You all get homesick. I can’t help you when you’re so far away. Look, just come home. Forget that stuff.”

I took a deep breath. “I’m okay,” I said. “It’s been a long week. I’m just tired.”

By my twenty-second birthday I was one month into school and reading articles on social stigma and disability in my bedroom, where I felt as if I was living in a futuristic horror film. Every article validated a truth about my situation that I’d only vaguely acknowledged. Now I took each paper as evidence of an entire world with false notions about people like me. I saw myself as helpless in the face of those beliefs. Between my classes, my internship, and my part-time job as a sales clerk in a clothing store, I had no time to write fiction or poetry anymore.

The doorbell rang, and seconds later my roommate knocked on my bedroom door. She handed me an arrangement of fall flowers with a subscription to
The Atlantic.
The card read: “For my writer. Love, David.”

“Oh, no,” I said.

“What’s wrong? I just handed you flowers,” said my roommate. “Looks like he has good taste, too.”

“No one knows that better than I do,” I said, but inside I called myself a liar. I had to admit that David was perfect for me in every way but one. He suffered from loving me. That I could not appreciate love from a man was not a good sign—and a greater threat than my paranoia over the flyer from the Disabled Students’ Union—but there was so much to sort out about motherhood and disability. Boyfriends now seemed a simple hurdle in comparison.

I was equally vexed by David’s reference to writing. Writing was my one unconditional love, and I’d let it go as well. For weeks after that night, I debated whether I should switch to an MFA program instead. Every evening I’d step from the trolley on the corner of Harvard and Commonwealth and think, “How would I support myself as a writer?” Halfway home I would decide, “Journalism school.” Before I reached the stoop of my apartment building I would be facing dozens of reasons why I would never be hired.

Until now I’d had almost no connection to disability, mentally or emotionally, but it dictated much of my life. If I did not learn as much as I could about something so crucial to my existence, I would remain at its mercy. I had to prove to myself that I could earn a living. The vast majority of journalists in 1982 were men, and to earn a living at writing I’d need to be working for a newspaper or magazine. Women complained about how difficult things were for them, but a woman with a disability writing for a newspaper? Or a fashion magazine? I hadn’t actually sought interviews, but my instincts told me to forget those jobs. Given that I generally did not back down from trying things, I had to listen to my gut.

Then I read a study by Robert Kleck, of Dartmouth. He found that in the presence of amputees, able-bodied people stood at a greater than customary distance and even manifested symptoms of panic. For me, this information validated years of fighting an invisible wall during some of the simplest transactions with strangers. I’d seen fear on their faces when I was swimming, because I wasn’t wearing legs.

Maybe this is why people with missing limbs often end up on the streets. How does someone who evokes such fear get hired? Artificial legs in 1982 cost about $10,000 per limb without insurance, and legs need to be replaced every few years. By 2002, they would cost $75,000 without insurance, and $85,000 by 2012. People with amputations may not be able to afford prosthetics, but worse, they are less likely to get a job if they don’t have them. That becomes a vicious cycle. Now that I knew this, it seemed selfish of me to contemplate fiction. As I saw it, I owed it to people who were not as lucky as I was to advocate for them.

F
ortunately I had roommates, Tish and Donna, who periodically shook me from my monologue of sobering disability facts. Tish, who was studying social work, giggled in a teenager’s voice and had a teensy flower tattooed inside her wrist right at the place where you dab perfume. Cursing and laughing the whole way, she would plow her ancient car through mounds of snow. I’d never met anyone so energetic, and yet she often chose inertia as the topic of her papers. Donna was an ICU nurse who grew up in Newton and graduated from Boston College. Another Catholic girl with about ten siblings, Donna understood what it meant to be part of a huge clan. Neither woman dismissed my heated diatribes on disability research. In most cases they validated my conclusions. But they also let me know that I needed to ease up a bit.

Together we escaped to the islands. We spent a spring break in Tish’s father’s seventeenth-century farmhouse without electricity on Block Island, where we slept by the woodstove at night and scaled the jade hills on Tish’s dirt bike by day. In the summer we visited her mother and stepfather on Nantucket. Although I thought it unusual that Tish and her sisters had several homes to stay in—a historic house in town and several by their mother on the coastal cliffs—I never inquired about their family’s good fortune. Mostly I relished the remote beach that Tish drove us to, with its sand soft as flour, where we swam topless in a secluded cove. By the end of the summer I felt almost like my old self.

After Tish’s sisters backed out on a trip to Jamaica the next Christmas, her stepfather, Walter, flew me down in their place. Years later, I would hear a man on NPR talk about being one of the few black men living on Nantucket and how Walter Beinecke was the only person to give him a job. “Walter,” I said, turning up the radio. “Tish’s Walter Beinecke?” I hadn’t known in my twenties that Tish’s stepfather was famous for his philanthropy, not only in the restoration of buildings and industry on Nantucket but for his family’s endowment of the Beinecke Library at Yale University.

My life might have been hurling toward tragedy, but it was offering me a seat in first class.

CHAPTER 20

The Gravedigger’s Granddaughter

I
n my second year at Boston University, I interned on a spinal cord unit. Patients there had flown from motorcycles into stone walls, skied into trees, or dived into unexpectedly shallow waters. These folks faced similar or even tougher questions than the ones I’d been pondering for the past two decades. On top of that, they had to confront theirs all at once. My supervisor explained how I fit in on the ward: “Upstairs the beds are filled with bikers, skiers, athletes
your
age, almost every one of them male, and they are now in wheelchairs. You’re twenty-three, a woman,
and
you have a disability. Up there, you’re a walking Rorschach.”

The first question patients asked their physicians was usually “Will I walk?” The answer was generally no. The second question was “What about sex?” The good news was that sex was a viable option for most. Psychologists and interns did whatever it took to get talks about the future going, so as to reduce the possibility of patients grieving in the isolation of their homes after discharge.

Physical and occupational therapists would complain, “Why do you want to bum this guy out? Last week he was feeding and dressing himself; this week he’s cocooning.” (The term “cocooning” meant that a patient pulled the sheets over his head and refused treatment.) Inpatient rehab was limited to three months, so a cocoon made a safe house to survive the psychological trauma of the injury during that time. Based on my own experience with grief and disability, I could see why a person needed to insulate himself before facing a life that required so much effort just to survive.

Because rehab works best with creative talent at the wheel, the psychologists on my unit offered a workshop called Sexual Attitude Reassessment. These workshops included porn fests, encounter groups, and frank discussions about sex. It was heartening to see that beyond the unit there was a thriving community of folks in wheelchairs. At the end of the year I joined the Boston Self-Help Center so that I might contribute and learn from others about advocating for the rights of people with disabilities.

The intensity of this work took its toll, but it forced me to follow Tish’s advice. She’d warned me that mental health workers should undergo psychotherapy themselves. I had asked for a referral from my supervisor when I was at Children’s Hospital. For the past year, I’d been rising at dawn to take a bus to the corner of Harvard and Longwood, where I saw a psychologist named Joel, who worked and lived just blocks from the hospitals. Joel, my Freud, smoked a pipe while I told him about my losses: Frankie’s death, Mom’s hospitalizations, other details of my childhood, and leaving David without understanding why my feelings for him had evaporated. Eventually I would have to face the pain I’d inflicted on others.

It was late in the summer when Joel greeted me as usual at the door to his apartment. I hurried past him into his office. Before he could light his pipe, I launched in. I’d met a guy who asked for my number at a party and never called, though I later ran into the same guy on a beach thirty minutes away. “And I didn’t have my legs on,” I said, checking for Joel’s astonished reaction.

He only nodded.

“My friend and I were trespassing. It was a private beach on the North Shore.” I glanced up at Joel’s degrees. My Freud had gone to school in Texas? “We were basically in this guy’s backyard,” I added.

“Mmm.” He lit the pipe.

“He took us sailing.”

“Yes?”

“Yes! And I didn’t have my legs on because we were swimming. Did I mention that?”

“He must have thought you were a mermaid.”

“Mermaid?” My heart quickened.

“Like in that movie—”

“With Tom Hanks. Yes,” I said. “I’m a mermaid. I’m a mermaid who washed up on the beach. Maybe he saw me that way.” I left that session in a daze. The city was alive with summer, which is Boston at its best. The schools are out, the beaches are nearby. Down at the harbor, the sea salts the air. On Harvard Avenue in Brookline, the scent is of onion bagels baking.

Late in the fall, as I came from the bus stop, I saw why I had been referred to Joel by my supervisor at Children’s Hospital. A girl not more than eight years old came out of Joel’s building on crutches, her body twisted with a muscular or neurological disorder that looked painful. But she was smiling as her mother pulled up to the curb. Lucky her, I thought. What I could have accomplished with Joel when I was eight!

So much was coming together for me at the time that I couldn’t shut my brain off. There was wonder in everything. And, oh, did I talk. If I wasn’t reading, I was talking. Sometimes I was talking as I read. Other than papers and notes in charts, I had stopped writing. But that was okay, because words moved straight from my head to my tongue, completely unedited. Free association, this was what I was learning, and it was the result of beginning psychotherapy on top of having two separate hours of analytic supervision weekly. The freedom was such a relief that I didn’t care if I talked too much. In our group supervision, a different intern was reduced to wailing in each session. Sometimes our leaders sobbed. This was Boston in the eighties; self-analysis ruled, but equal opportunity mattered as well.

One morning, I looked up from a chart to find a group of medical students on rounds. A face in the crowd smiled at me. The next day, this same young man stepped onto the campus shuttle and walked right to my seat. Because of my chatty nature, it wasn’t hard for him to strike up a conversation. His name was Daniel. We quickly discovered two obstacles to dating. For him, there was a family obligation to date only within the Conservative Jewish faith; for me, it was an impossible match because Daniel had been offered an internship in Cincinnati. Even during my loneliest moments in Boston, I could see that my time in Cincinnati was behind me.

In our short time together, Daniel listened while I gave him the rundown on my life, not to mention the ever expanding list of papers I would one day write. I had never met anyone so patient. One spring afternoon, after a walk through Back Bay, we rested on my futon in the sunlight.

Daniel asked, “Why don’t you move back to Cincinnati? I’ll be there. Your family is there.”

“I can’t go back.”

“Why not?”

I tried to conjure an analogy for my feelings. “Imagine growing up in a town where everyone was exceptionally good at keeping secrets—that is, keeping secrets from the one person who really needed to know them, and that person was you.” I rolled onto my stomach and rested my chin on my fists so I could look into his pale blue eyes, just one of his calming influences. “You know the classic tale about the bastard son, the only one in town who doesn’t know which man is his father?”

“Sure,” he said with a hearty nod. Then cautiously he asked, “Is this ... does this have anything to do with thalidomide?”

I dropped my forehead. Why couldn’t I talk this freely with everyone about the t-word? “Yes!”

“I think I understand the problem.”

It turned out that Daniel’s father, a physician in Los Angeles, knew someone who was an expert on thalidomide. He referred Daniel to a book written by a task force connected to the London
Times
. Daniel found it in the library and brought the book straight to my apartment. I recoiled when I saw the title:
Suffer the Children: the Story of Thalido
mide
.