Mermaid: A Memoir of Resilience (34 page)

We were just about to get off the phone when he said, “Your family never sued?”

I sighed. No lawsuit. How to explain that? “You’d have to meet my family to understand.”

“And what would they say?”

“They’d say ... Well, they’d say, ‘You can’t sue God!’”

“Ha! I’ll look forward to reading about that.”

I hung up, certain that I could not possibly pull off this assignment. Then I set up the typewriter again. Ten days later, as I clacked away at one of my later drafts, Tom came home from a class and peered over my shoulder. “You can’t sue God,” he read aloud. “You’re not going to say that, are you?”

“David Ignatius liked that line.”

“And you’re going to let him put words in your mouth?”

“They’re
my
words!”

Tom was leaning over me at the cheap metal table, the same kind that students everywhere ate meals on, although we almost never ate at ours. Because of our schedules, we’d probably had ten meals together as a married couple. For several days now, I’d had my typewriter parked on it. Through the picture window, I saw the sun’s final streaks blood-orange against a blackberry-stained sky.

“I’m hungry,” said Tom. He jerked his chin in the direction of a box of crackers on the kitchen counter. “Do you ever eat anything but bird food?” His face glistened with sweat. His near-perfect features had started to trouble me. But he had a point. I lived on cheese and crackers, washing them down with wine. I was pale, had an oily sheen on my face, and I’d become scrawny. Lately I would open a bottle of wine before Tom came home from school. Drinking alone was a scary business, and while I was quick to take some risks, alcoholism was not one I was eager to pursue. Given that I had family members in recovery, I was growing very uncomfortable with my own habits. After all, I had once tried to kill myself under the influence.

Tom squinted as he repeated my typewritten words to himself. “You really cannot say this bit about suing God. That is
so
unprofessional.”

I considered the line cheeky, which was my way of communicating what I could not spell out in words. As for Tom, I thought, “What do you consider professional? Only your point of view?” Tom was an extraordinary writer, and I respected his editorial advice. I’d been humbled enough times to know that it is never wise to let pride get in the way of learning from someone who is good at what they do.

On the other hand, our rapidly changing beliefs were taking us in very different directions. Tom was learning civil and constitutional law. With his scholarly mind, I’d imagined that he would put this degree to use in human rights activism or as a law professor, but lately his face would take on a menacing expression while he ranted about
everyone’s
civil rights. Of course, everyone should have rights. Who would argue with that? But he’d say, “Even Nazis and the Ku Klux Klan have the right to stage public marches.” All of this was couched in hypothetical situations and mostly for the benefit of our friends, people like Ted and me
.
I’d glare at Tom and wonder if I should ask what had gotten into him, but worried that would only fuel his antagonistic game. My sense of humor was stretching thin, partly because of my “bull head”—a term that had lately replaced the endearing “pumpkin head”—but also because I was taking classes at the university that had granted Thurgood Marshall a law degree. At Howard I was learning that the “objective” point of view was too often equated with a white, male, college-educated one, and that the world beyond that demographic was characterized as biased. I entertained, although I disagreed with, Tom’s argument about Robert Bork’s merits as a potential Supreme Court justice. At first, I was fascinated by what I thought was his ability to see all arguments. But I couldn’t abide the discussions of Nazis’ or Klansmen’s rights, not even if they were intended to stretch our imaginations.

Tom was pressing me. “You can’t dismiss your family’s decision not to sue in that flippant tone.”

Dismiss
in a flippant tone? I couldn’t believe that my husband, a law student, saw my words as dismissive. It seemed to me that I had been dismissed.

I turned to him. “My family has always had my best interests in mind, right? I’ve spent my life struggling to stay afloat so strangers could slap me on the back and say, ‘You must be so grateful to your family.’” Now I was crying. Then, because I never did submit easily to defeat, I unleashed everything that I was trying to contain. “In case you’re wondering what I’m feeling, Tom, there are times I want to say to people, ‘I am here, not
because
of my family, but
in spite
of them.’”

He flinched, either at what I’d said or at the emotion behind my words. He came as close to my face as he had on the streets of London when I first saw his temper erupt. Red-faced, he screamed, “Who said your mother took thalidomide?”

“Just about every doctor I know!” I shouted back. “Oh, except for Mom’s obstetrician, but then he probably gave her the drug!”

“You can’t prove that,” he said.

“You don’t know half of what I could prove,” I said. I stood up and screamed in his face, “And the reason I don’t tell anybody, the reason I keep it to myself, Tom, is because of
people like you
.” I poked my finger in his face.

As he stepped back and shook his head, I thought, “No, don’t back away from me now. Listen to me. Look beyond my anger. I’m dying inside.”

Instead he pointed down at me and said, “But
your mother said
she never took the drug.”

“Don’t twist my intentions around. I’m not blaming Mom for taking the drug. I know she wouldn’t have known what it would do. But what about me? What about my future? Our future? Wouldn’t you like to know for sure that we won’t have a baby with three heads?”

His whole demeanor changed, and he laughed this off as a joke. “If she looks like you, that would be fine with me.”

I realized he was only trying to make light of a frightening situation, but I felt that if he respected me at all, he would know that this was no laughing matter to me. Back in Massachusetts, we’d spoken of my concerns about motherhood. He had sympathized with my situation, but since our marriage we’d stopped having those deeper conversations about ourselves. They’d been replaced by erudite diatribes that had little to do with us as a couple.

“Are you really going into law with that naïve attitude?” I said. “When are you going to grow up?”

“Don’t,” he said, stepping back. His lower lip quivered. I’d gone too far. He jabbed a finger at my typewriter. “Is this all you care about? Does anyone else matter to you, Eileen? You don’t even care about family.” His eyes narrowed as he glared at my words on the page. “Fuck you!” And he stormed out of the apartment.

After that, my hands shaking, I took out the sentence.

M
y essay was the feature article in Sunday’s “Outlook” section. It came with an above-the-fold photograph of me and the title “I Would Choose My Life.” The insets included scenes from my life: a picture of me in my first pair of legs, one of my parents in Germany while Mom was pregnant with me, and one from my wedding day. A story about Oliver North followed. Initially I liked the title because I
would
choose my life, darkness and all.

The response to my article overwhelmed me. Soon the story was sold to the wire service and appeared in papers all over the country. I was invited to appear on television and radio, to cut the ribbon at a Special Olympics event, to testify in a class-action suit, to sell my life story to a screenwriter, and even to go on
Larry King Live
. I couldn’t eat or sleep. My weight was down to eighty-eight pounds. Now that I’d published something about my life, people expected more details. I was afraid I’d say the wrong thing and upset my mother or embarrass Tom. More likely, I’d sound stupid.

On the other hand, I saw an opportunity to change the image that most Americans had of people with disabilities, which had become the most pressing goal of my adulthood. Tom was right about this much: for better or worse, I could not divorce myself from that commitment.

Days later, I appeared on a national talk show. The hostess, a clinical psychologist, introduced me as a “thalidomide baby.” The phrase sounded patronizing, if not dehumanizing. Who in the media had decided that “thalidomide baby” was an appropriate term to describe an adult in my situation? After a few light questions, the hostess was asking me to describe my “intimate life” with Tom. The question seemed inconceivable on live television. I said, “I’m not sure I heard you. Could you repeat that?” She backed off.

I was drinking two glasses of wine a night or, when I couldn’t sleep, as many as four. By the time I was offered three months of free representation by a Hollywood publicist, I was fighting suicidal urges. As a rule I never missed classes or work, but now I called in sick to nurse a hangover. Sprawled on my sofa with a fan blasting me, I could see that alcohol posed the biggest threat to my life, and yet it seemed my only remedy for stress. That day
The 700 Club
invited me to go on their show. When Tom came home from school that night, I told him about the offer. He said, “But you are pro-life. If you’re suggesting that even babies with disabilities should be born, then you’re pro-life.”

At first I was too stunned to respond, then I thought he was joking. On top of that, my mother had delivered my article to our neighbor who ran the National Right to Life campaign. I’d come to see that Mom’s actions, at least in matters of religion, were like a nervous tic. She could not stop herself. My convictions about disability often brought me to a similar place, and I felt sorry for her because invariably these convictions isolated us from the people we loved. We didn’t give people room to breathe. But now I felt manipulated by my husband. Whereas Mom didn’t always think through her actions, Tom was more calculating. I worried that he would use this to bolster a political career—one that I didn’t even buy into. Immediately, I dismissed that notion. At the same time, I realized that I had to make changes, and fast.

The next day I met with the director of clinical psychology at Howard. I’d been keeping him apprised of the offers from talk shows and so forth. I worried about the fall, when I would be expected to join the clinical program full-time. My fists were balled as I took a seat in his office. I said, “I can’t do these shows and be this person.”

“Then don’t,” he said.

His face was without expression. I knew him well enough to sense that he was trying to decide whether to say something about my appearance—the circles under my eyes, the wrists thin as twigs—or just let it ride, which he apparently chose to do. But he was going to make me work. While I waited for him to tell me what to do he stared back at me without blinking, waiting for me to grow up. Dr. Thompson was a patient man.

“How do I get out of this?” I finally said.

He laughed heartily. “You think those folks don’t have anyone else to pick on?”

I smiled to myself. “You mean ‘just say no’?”

“Simple as that.”

Sometimes I knew the right person to ask for guidance.

At home, I boxed up letters and phone messages along with the copies of my article that friends had sent me from papers around the country. I lingered on a letter from a famous literary agent offering me representation. That one was hard to set aside, but I decided that I would never write about my life again.

I
hoped that, having moved past the article, Tom and I would find peace and learn how to reconcile our different views. In an attempt to turn things around, we bought a house with money he’d inherited. Our families were expecting a baby from us. I wanted one very much.

Still, it seemed irresponsible to start a family without having answers about my birth defects. I could seek genetic counseling, but that wouldn’t provide definite information until I was already pregnant. I did not want to have to make a decision about whether to keep a baby. One of my first assignments that fall was a psychopharmacology paper. I chose to research teratogens, chemicals or environmental factors associated with birth defects.

Teratogens were the last thing I wanted to read about, yet I couldn’t stop myself. My evenings and weekends were spent staring up at the mural in the dome of the Library of Congress. There an angelic woman who represents Human Understanding lifts a veil representing Ignorance as she looks toward Progress. At my carrel below, I read that X-rays could cause birth defects which might be transferred to future generations. If X-rays explained my case, that would make for difficult decisions ahead. Although
I
might love a child like me, I wasn’t sure I wanted a child to grow up with the obstacles I’d faced. I hated to admit this to myself.

Of course, a person with a disability can have a wonderful life. It was also possible that I might make a great mother to such a child. But how would the rest of the world treat that child? I had lost faith in other people. While my husband was drumming up annoying hypothetical civil rights scenarios, I was engaging in an even less attractive habit: mistrusting every person with two arms and two legs. This put me at odds with almost the entire human race.

The more information I discovered, the more questions arose. Then I sat in on an amputee clinic with the dean of Howard’s medical school. A mother came who was born without legs, and next her daughter, who was born without arms. A physical therapist wheeled out a cart with a pile of child-sized prosthetic arms that had been donated to the clinic. The four-year-old girl balked at the sight of them. She knew how to get what she needed, and she wanted no part of those cumbersome arms. I understood her resistance. After all, there had been a time when I prided myself on out-squiddling the neighborhood dogs.

Once the girl and her mother had left, Dr. Epps explained that this family’s birth defects were the result of a mutation which began with the mother. The defects could begin in any generation of a family. They could be passed on from there.

“They just appear from out of nowhere?” I asked.

“It can start with anyone.”