Mermaid: A Memoir of Resilience (29 page)

“Oh, please,” I said.

“Just read it. Those are nothing but words on a page. Do you have to talk about everything? You talk about sex all day in that job. Just have sex. You talk about papers. Just write them. But thalidomide ... well, just read it.” He tossed the book on my bed. “I want you to finish that book by the end of the week.” And from the hallway he said, “Start now. I’ll let myself out.”

I sat on my bed and opened the book. There weren’t any pictures of the victims. If it had contained those exploitative photos, I wouldn’t have read it. At that time, my only knowledge of thalidomide came from tabloid stories, some with tragic and some with happy endings, in which the “thalidomide baby” or “victim” was so stereotyped that I never believed them. This book was not invested in sensationalism; it was about the cover-up. Until then I hadn’t known there was one.

By early afternoon the air had grown stagnant around me, but I was too engrossed to open a window. The book explained that the wife of a German lawyer named Karl Schulte-Hillen gave birth to a child with missing limbs shortly after Karl’s sister’s child was born with missing limbs. The lawyer looked into genetic causes and found no clues. After he checked around, it became clear that there was a rise of birth defects occurring in Germany. His wife recalled that she had taken a sedative in the first trimester of her pregnancy after her father died. Karl reported what he knew to Dr. Widukind Lenz, who began to investigate. Simultaneously, a physician named McBride in Australia was looking into an increase in birth defects there.

The eventual discovery of thalidomide’s toxic effects on the fetus occurred three to four years after the drug was put on the market in Germany and two years after I was born. I knew that Mom was pregnant when she went to Germany in 1960. What I had never known was that Richardson–Merrell, a
Cincinnati
-
based
company, supposedly handed out over two million tablets of thalidomide to US physicians beginning in 1959, after signing a contract with the German manufacturers, Grünenthal. The book claimed that Richardson–Merrell had failed to report side effects from animal studies, and that they had distributed thalidomide to more than 1,200 physicians throughout the US while they were applying for FDA approval. An estimated 20,000 women in the US were given thalidomide on routine office visits, in many cases without consent forms being given to them. This last information came from a legal deposition. Years later, these findings would be republished in a book called
Dark Remedy: The Impact of Thalidomide and its Revival as a Vital Medicine
, by Rock Brynner and Trent Stephens.

The excerpt from the deposition was the first place I saw the name of Dr. Ray Nulsen. The authors of
Suffer the Children
suggested that Dr. Nulsen had been chosen for a special role in the study because he had been in a fraternity at the University of Cincinnati with Don Merrell. Dr. Nulsen’s role was to enlist physicians to hand out thalidomide, convincing them that the drug was well-researched and so safe that there was no need to document any side effects. That information was included in the second book, as well as in a third book titled
Hooked: Ethics, the Medical Profession, and the Pharmaceutical Industry
by Howard Brody, MD. In the deposition, Dr. Nulsen admitted to keeping poor records of the drug’s dispensation; his secretary’s records were later proven to be inaccurate as well. Dr. Nulsen’s secretary testified that she would put tablets in unmarked envelopes in the mailbox, to be picked up by women after office hours. The tablets were not yet named.

What I learned next was mentioned in all three books. Using Dr. Nulsen’s name, a Richardson–Merrell executive attempted to publish an article in the
American Journal of Obstetrics and Gynecology,
intended to prove the efficacy of thalidomide in the treatment of insomnia during pregnancy. This was part of a move to push for the approval of thalidomide for expectant mothers. The journal’s editor questioned the findings.

Dr. Nulsen himself would deliver at least three living babies with severe side effects from thalidomide and two stillbirths, one without arms and legs, according to both the
Times
writers and the
Dark Remedy
team. Yet he testified in 1964, according to the
Times
task force, that he did not deliver any child with thalidomide-related deformities. Throughout this time, Frances Kelsey, the director of the FDA, was unimpressed by Richardson–Merrell’s application, and was requesting more clinical data. She also raised doubts about the safety of thalidomide during pregnancy.

Eventually the Australian physician, Dr. McBride, wrote a letter to the British medical journal
The Lancet
, inquiring about an increase in birth defects. The link to thalidomide was soon revealed. Shortly after that, the US clinical trials were shut down.

In the US, the number of thalidomide-related birth defects is estimated at as few as seventeen and as many as forty. Who can say how many people may have been affected but are not included in the reports? Was I one of those people? The effects of thalidomide are so diverse that they were difficult to identify in the early days of diagnosis. The drug has been said to cause heart irregularities, blindness, deafness, mental retardation, facial disfigurement, genital deformities, and a host of limb malformations. Its precise effect depends on the timing of its interference in the development of the fetus. The hallmark characteristic was the flipper-like limb, which I did not have—raising my own doubt about whether my mother had taken thalidomide. If she had taken it, in the grand scheme of things I was lucky. My injuries were minimal in contrast to others.

Now I had another problem, the issue of a lawsuit. The lawsuits, as described in
Suffer the Children
and
Dark Remedy
, were horrendous affairs. Individuals went up against major drug companies. US suits had favored the plaintiffs, but only after lengthy and demoralizing battles in court. The account of a California case raised the issue of the statute of limitations, which in that case ran out in 1971, just nine years after the child was born and five years after the parent had figured out that thalidomide was involved. At twenty-three, I assumed that the statute of limitations had long since passed for me.

Nothing could prepare me for the chapter on some of the families’ reactions. I read that one mother tried to suffocate a severely disfigured baby in the hospital. A British couple murdered their infant; they were acquitted before a jammed courtroom. The crowd applauded that decision. Husbands left their wives, blaming them for the misfortune. Some parents committed suicide. I’d heard from the sadder versions of tabloid stories about “thalidomide children” who had no hope of being adopted. Here again, I had to admit that in contrast I was lucky. I did not feel lucky, though. I’d just been pummeled by facts that would never be substantiated by my only firsthand witness, my mother.

CHAPTER 21

One Door Slams, Another Opens

S
leep failed me for several nights after I read about thalidomide. My father might have offered up the truth about my birth—if he knew the truth—if I were to ask him straight out. But he was seriously ill. Doctors were running tests to determine the cause of his endless fatigue.

With Frank gone and Dad ill, my relationship with Ted had become crucial. Unfortunately, he was studying in England that year. Now more than ever, I needed someone in my family to understand my fears as well as my disillusionment. Bridget lived nearby, and part of my reason for choosing to move to Boston was that I longed for a relationship with an older sister like her. She had been born ten years before me so I didn’t know her well, but I knew her to be gentle. Bridget had grown up with younger parents and more structure. As I saw it, she’d never had to defend herself in a brawl, nor had she been embroiled in one of our sessions of taunting and ridiculing one another. That kind of behavior seemed foreign to Bridget’s upbringing. To me, it wasn’t that Bridget was better than the rest of us, but she had been better off.

People in the family always said that Bridget took after Dad and Katie, which meant that she tended to keep her thoughts to herself. That was an asset. I felt that I was utterly incapable of editing myself before I opened my mouth. During the tumultuous years between our mother’s hospitalizations, Bridget had been away at college or married and living up north. I suspect that she’d felt ambivalent about having moved away, because her eyes misted at every family gathering when one of the “babies” mentioned an event that she’d missed. Bridget loved family—ours, hers—and like Katie, she focused almost entirely on its good parts.

When I had first moved to Boston, Bridget would talk with me about my studies and even about the issue of disability. This was a topic I’d never been able to share with a sibling, except lately in letters to Ted. By now it was clear to me that Ted and I shared a similar narrative about our family. We loved our family but we saw its problems.

Living in Boston, I was able to spend weekends with Bridget’s family. I adored her children. I loved seeing Bridget as a young mother. It brought the best memories of my own childhood back to me. When her eldest daughter, at six, danced to “Let’s Get Physical,” I couldn’t help but see Liz and Rosa doing one of their Barbra Streisand acts, only now the girl sang in a Boston accent, “Lemme heah ya body talk ...”

Earlier that year we were swimming in Bridget’s backyard when her three-year-old son came out the back door waving his light saber. I had just come from the pool without my legs on when he pointed his light saber at me and asked in his Darth Vader voice, “Who destroyed you?” Bridget blushed, and I laughed. Here was a three-year-old who looked up to Darth Vader. Like Captain Ahab, Darth was a “gimp with a grudge.” This was an ideal opening, so I told my sister about Kleck’s research on amputees, which explained why Darth Vader was such a fearful character. I would have preferred to be direct and tell her about my own experiences, as well as what I had learned about thalidomide, but I was intimidated by her restraint. This time, however, her blue eyes grew glassy with tears. She described the awful experience of strangers staring at me wherever we went. That was in the days before I could walk with prosthetic legs.

I squeezed my eyes shut; someone in my family understood.

Then she gasped and tightened her knees against her chest. For a second, her typically stoic expression splintered, and I realized that
she
had felt under scrutiny. After that, I was afraid to bring the topic up again.

Adding to this awkwardness with Bridget was a rift with Liz, which had been expanding since my first weeks in Boston. The problem started when a friend from Cincinnati mentioned that she thought Liz had been gloating to our mutual friends about charging things on Dad’s credit cards and signing my name on the bills. I should have dismissed this immediately. It was coming secondhand. My friend might have mixed it up, or Liz might have been talking about something that had happened years ago. Aside from that, Dad never complained about the charges on his credit cards. He must have figured there were too many charges coming from so many children that it wasn’t worth chasing them down, and for the most part we acted responsibly when we charged things. But this story nagged at me. After all, I was struggling to make my own way. The other girls in our family had married soon after college with no plans for long-term careers and I didn’t want Dad to think I expected him to take care of me forever.

The mature thing to do, I decided, was to wait and take it up with Liz in person, over my Christmas break. Admittedly, I worried that maybe I was just putting off the confrontation. Deep down I didn’t believe I could stand up to her. I’d let myself be manipulated by some of my siblings so often that if I didn’t say anything it would never stop happening.

Maybe there are some things we should not take on, and for me, that thing was Liz. I was incapable of summoning my courage while at the same time modulating my anger. I had too many memories of Liz taunting me or slapping me in front of my friends, of feeling defenseless and demoralized. In fact, my efforts to stand up to Liz thus far had been so laughable that they only proved her point: I became Pinocchio Gone Wild.

On Christmas Eve, when Liz and I were upstairs in my parents’ house, I realized that I might never have a moment alone with her again, so I opened my mouth and my anger spilled out in the worst possible way: “Liz, you cold-hearted bitch.” Before I could say any more, she burst into tears and ran out of the house, her husband at her heels. I chased after her to explain, but she was too quick. And that was when Rosa raced up the stairs, blocking me and saying, “Why did you just attack Liz?”

This was the third Christmas I’d ruined. At four, I cried during the vacation movie. At twenty-one, the sibling with an alcohol problem whispered to me on Christmas Eve, “Help me. I’m dying. Pleeeeease help me,” which led to my screaming, “HELP! Somebody get help!” Although our sibling began recovery the next day and has since lived a healthier life, my reputation suffered from the outburst. At twenty-one, I’d become the quixotic “I-lean.” By now I heard the negative version of my name in the voices of my older sisters as well as my mother. Not only was I the wettest blanket any party could possibly include, but I was on my way to earning the identity “Snarleen.”

Now, just as in the other fiascos, no one asked me why I had exploded at Liz. She was well-liked within the family and was Mom’s favorite antiquing buddy. She was the very opposite of Snarleen. While Liz donned the Barbara Bush pearls, I took on Rosie the Riveter’s fisted pose. I might have asked Ted to defend me, but his endorsement would probably do me in altogether because, after all, Ted was “the devil himself,” a tag that he laughed at from the depths of his belly. Given my snarly nature, I could have used some of Ted’s cast-iron stomach.

Dad was the only adult who supported me after Liz left the house. When I holed up in Nina’s bedroom, sobbing, he came upstairs and said, “I don’t know what you said to Liz, but I’ll bet she had it coming to her.”