Lessons from the Mountain

by Mary McDonough

  Her third-grade teacher called a meeting with Rob and me. She told us Sydnee was very smart, but she needed help. Back to the doctor. We were so desperate this time, we gave in and tried medications. They had horrible effects on her. It was like torturing your own child. She would vomit with one; then another would make her fall asleep. With one, she completely lost her personality. One teacher said, “Where’s Sydnee? I don’t think these meds are right for her. She’s not herself. She’s like a zombie.”

  Even Sydnee realized she was different. We were lucky enough to find a specialist at UCLA Medical Center. He tested her and diagnosed her with Tourette’s syndrome. With that came the OCD, ADHD. He was the first doctor who was really able to help her.

  She was still having a lot of trouble at school and falling behind. I was against medications, so I tried many things that didn’t work, a few that did. Judy Norton told me about one program that helped both of us. The Hollywood Education and Literacy Project helped me work with her using visual aids and other methods to access her particular learning abilities. By achieving mastery of simple concepts before moving forward, she began to develop a better foundation, and her attitude about learning and school in general improved.

  About that time, I cohosted a show for the Travel Channel with Chris Knight (Peter Brady, of course). He told me he’d recently found out he was ADD and wished he had been properly medicated years ago. He explained I should not give up on Sydnee or a medical solution for her. He told me he was convinced his first two marriages would not have ended in divorce if he had known he had ADD and had treated it. He said he could trace the behavior back to his childhood, and he wished he had help then. His words stuck with me.

  HAVING A “NO”

  People always asked me if I would put Sydnee into acting. Luckily, Sydnee didn’t want to act back then. They say we want our kids to have the benefit of our experience. Growing up the way I did, I was no different. Like my parents giving us the dance classes and big Christmas mornings they never had, I wanted Syd to have what I didn’t.

  I always had a tendency to overexplain everything to Syd, probably a direct result of the way I grew up. Often people who heard me thought I was a wack-a-doodle, but given my experience, I was obsessed she know everything. The pendulum had swung clear to the other side. I can laugh at the overexplaining everything now, but my motivation was to prevent her from having her own Dinah! moments. No surprises for my kid. In fact, now I can say I do most of what I do so people never feel as uninformed, frightened, and bad about themselves as I did. I can laugh about it now, and I am sure you are chuckling along with me, but I was a bit crazed.

  Sydnee’s life was more like this: Picture me down at her eye level. “Okay, Sydnee, now, this is called a birthday party. We will bring this present inside, but it’s not for you. When we get there, give it to Katie. There may be balloons, maybe not, maybe decorations. Then you’ll play and maybe some games will happen. Then cake will come out with candles on it. We’ll all sing to Katie and she’ll blow out her candles. Then you will get some cake and ice cream. Katie will open her presents. Then we’ll go home, which will be in our car and take about five minutes. Okay? Do you understand?” Blah, blah, blah…imagine having me as your mom. I was an admitted nightmare at times.

  Another thing I felt I didn’t have growing up was a “no.” As a result, I gave Sydnee a very strong “no.” Sometimes it’s hard to have her be so strong in her “no,” especially when it comes at me full force, but I wouldn’t want her to feel as disempowered as I did.

  Over the years, her life has gotten so much easier. I am so amazed at her continued progress and who she has become. She had a tough time, but she is a strong and compassionate person because of all she went through. I am so proud of her, my heart sings. There are so many lessons here about having a kid with a disability, but that’s another book. Sydnee is an incredible kid. Her challenges in life have made her a sensitive, caring person. I am so lucky to be her mom and to see the person she has grown into.

  11

  NUTS AND SLUTS

  The more I found out about the dangers of implants from court documents that cited the manufacturer’s own data, the more concerned I became. Dow Corning was found civilly liable for failing to disclose to recipients the dangers of their implants. The company’s own scientists had raised concerns about suspected problems; yet their PR machine continued to argue against women who questioned the connection between implants and health concerns.

  Internal documents indicated that complications reported by women had been suppressed. I found out there had been suspicious links to autoimmune diseases, and an entire community of researchers disagreed on the safety of silicone use for medical purposes for several years before I even had implants. Why hadn’t my doctor told me any of this information? Terror ripped through my heart. Had I poisoned myself and my baby girl? What had I done by having implants?

  The court transcript exhibits included one study I’ll never forget. In 1967, Dow Corning commissioned a four-dog twenty-four-month study using miniature silicone implants. They implanted dogs with samples of the devices—like the ones used in women—and examined the subjects at six months, and then at twenty-four months. Well, three of them, anyhow—one of them had died after only eleven months. The necropsy showed it had liver and kidney congestion, and fibrous tissue reactions at the site of the implantation. The other three were killed at the twenty-four-month end to the study. All of them had severe or moderate inflammation at their implantation sites.

  This is a small sample in the world of scientific research, and probably wouldn’t have received a lot of attention; except that in 1973, Silas Braley, of Dow Corning, published a report of the study. He falsely claimed that there were no differences between the six-month and two-year results on these poor dogs. They supposedly found no adverse reactions upon necropsy, and he also failed to report that one of the dogs had died during the study.

  First, I thought about the cruelty to the dogs. Imagining breast implants in a dog still makes me shake and outrages me.

  Second, as a consumer, I had been kept in the dark about the company’s own studies and research because confidentiality orders in litigation often impede the information from reaching the public. It’s protected until a trial. If someone settles out of court, important details may never reach the people who most need to know the information. Unless someone knows to look for the court documents—and knows there is anything to look for—the information doesn’t get out.

  The other red flag is that if Dow Corning’s own scientists had published studies with inaccurate and misleading conclusions, how many other discrepancies and poorly constructed research was being presented as worthy and was putting women at risk?

  When women started to get sick, they didn’t look for court documents, thinking it was their implants. When I had my symptoms, I didn’t think of calling a lawyer. I went to the doctor to get well. So, for years, no one looked for this information. There was no “link” back then, and my plastic surgeon certainly wasn’t talking, either.

  In 1977, a woman from Cleveland sued Dow Corning because her implants had ruptured and caused her a great deal of pain. Richard Mithoff, a Houston attorney, argued successfully for her case and she accepted a settlement. This case didn’t receive much publicity at the time, but the internal documents, lack of scientific research, and compelling argument against a medical device that causes harm was the boulder we women have pushed uphill against the manufacturers, plastic surgeons, and, in some cases, the media ever since.

  As silicone implants became more widely accepted and accessible, the detriments to women increased, but apparently corresponding research and long-term studies on their safety didn’t keep up. As I read further about the history of the industry, I found out more cases of harm done to women like me.

  In 1984, a jury had awarded Maria Stern, who had immunological problems caused by her silicone implants, $211,000 in compensatory damages and $1.5 million i
n punitive damages to be paid by the maker: Dow Corning.

  BUT I PLAY ONE ON TV

  I started to work a bit more as I got better and was lucky enough to get the role of a lupus patient on ER. After filming, the Warner Brothers publicist called me and said he’d heard a rumor I actually had lupus, was it true? I said yes. He asked if he could release it to the press. It was a huge decision I agonized over. I was getting better and I was working again. Did I want to admit to being sick? In public? Would the industry judge me as a risk, unable to work? Who would hire me? Would I lose jobs?

  As I learned to do with tough decisions, I meditated. I got quiet and connected with the inner me to find an answer. My thoughts reviewed the letters, the march, faces, and e-mails from the women who had contacted me for help. I thought of my dad and wondered what he would advise. I talked to my mom and she was supportive of anything I decided. She knew how much I wanted to work, but also how important it was to help people. Some of my friends advised against it. “You just started to get your life back—don’t do it. You may ruin your career,” they reminded me.

  When I made my final decision, it was because I believe I was given this experience for a reason. I feel my path is to tell my truth, no matter how difficult. I had donated so much of my life to charities I wasn’t personally connected to, now I could actually speak from what I knew. I said yes.

  After the ER publicity, a People magazine article followed. Then I got a call from MSNBC to talk about ER on their news show. The broadcast coincided with the release of what we now call the “nuts and sluts” study. The Fred Hutchinson Cancer Research Center reported that women with implants drank more, had more abortions, a greater number of sex partners, and dyed their hair more than other women. So I guess the conclusion was that since we were all trashy women, anyway, it was no wonder we were always getting sick.

  Something I had learned in my research of the implant industry was that it’s often difficult to get clean “science” when the manufacturers themselves pay for the results. I know this is a standard practice, but I think it sometimes creates a conflict of interest. This happened over and over with implant research; take for instance the “nuts and sluts” study.

  Two of the doctors conducting the study had connections to the manufacturers. The Journal of the American Medical Association, or JAMA, reported that one doctor served as an expert witness defending the epidemiologic methods, which is the research to determine the relevance of silicone implants to women’s illnesses, used in proving the safety of breast implants. The other doctor had been retained as a paid consultant to several law firms representing defendants in breast implant litigation. Hello? Do you see a pattern here?

  Sensing possible media trouble, I agreed only to talk about my role on ER; I would not comment on the study.

  I was in an L.A. studio the morning of the show; the anchors were in New Jersey. I sat in the news studio and listened to their disembodied voices speaking in my earpiece. I looked into the camera lens and tried to be personal in this disconnected setting. I was prepared to speak about how honored I was to be on such a great show, ER, and to help raise awareness for lupus, a disease I had. That was how I wanted to make a difference.

  I wasn’t prepared for what did happen. When we went live, the reporters ambushed me. They challenged me about the study and said things like, “Doesn’t this make your former comments about implants false?” and “What do you have to say now that science has shown women’s lifestyles are a factor in their illness after getting implants?”

  They fired one question after another, citing the study, cornering me, challenging me to defend myself and anything I’d ever said about the danger of implants. Luckily, I knew enough about the study to speak to it, but defending myself against these voices in my ear threw me. And besides, I was really interested in speaking about lupus, not the “nuts and sluts” study.

  At the end of the interview, I was still connected by microphone to the studios on the East Coast. I addressed by name the guy I had made the agreement with, and sarcastically “thanked” him for setting me up on live television, then threw the microphone on the chair and walked out of the studio.

  I shouldn’t have been so trusting or surprised they’d broken their promise. I felt the fool; it was humiliating. I still didn’t manage the media well.

  This would be the beginning of years of public scrutiny and criticism I received for standing up for what I knew to be true. I was a healthy girl. I got implants and got sick. I got them out and got better.

  My mind swirled with the decision I faced. I could give up, move on with my life, and hope everyone would forget about any of this so I could go back to the business of auditioning for work. Or, I could get a spine and speak up for myself and other women who were being harmed or who would potentially be harmed in the future. What would happen to my career if I continued speaking out, telling my truth?

  MY FOUR-LEAF CLOVER

  When I got home from that interview, my phone rang. It was a man calling from Washington, D.C., and he told me one of the support group women had given him my number. He told me he was working with the sick women and trying to help them have a voice in the U.S. Congress. I was suspicious.

  “I’m working with women who’ve become ill from the implants to give their testimony before Congress and the nation. Here it is, 1996, and we’re still fighting for more testing and help for women who have been harmed. Would you be willing to help us? We could really use you in our efforts. Since you are recognizable, people feel they know you. The connection with you would help reach women and their families on this issue.”

  Talk about lousy timing. After that MSNBC interview, I was in a foul mood and told him I didn’t think I ever wanted to speak out on this topic again. I’d never wanted to be a poster girl—I just wanted to work. He said he understood, but his words about the importance in getting the truth out there resonated in me. The reasonable side of me took over and I told him to call me in a few weeks.

  His name was Tom Sheridan, and he did call back exactly two weeks later. I didn’t know it then, but this Irishman would become my personal four-leaf clover.

  Tom told me about an effort to help educate women and Congress, to challenge the implant manufacturers on what they knew about the dangers of the devices, and how long they’d known their potential to harm healthy women.

  “Mary, would you be willing to come to Washington to launch the effort in a press conference?”

  Wow! Getting the information out to the public was important, but why was it up to me? Wouldn’t it be easier to hide under a rock and deal with my own troubles? I’d already experienced one public humiliation in that MSNBC interview. Did I really want more public scrutiny, to be vulnerable with something as private and personal as my breasts, my illness? Did I want to focus on what was wrong, instead of what was good and positive? Where was that rock?

  My McDonough upbringing that taught me responsibility to others, and my sense of family I’d learned on Walton’s Mountain, kicked in. Too many women had been made to feel insane by their doctors and communities, me being one of them. Women deserved to know the facts I never got to see so they could make educated choices.

  “I’ll do it,” I told Tom. “But only if you can promise me that I won’t be ambushed again.” He promised, and to this day—fourteen years later—he has kept his word. While I have faced scrutiny, tough press, difficult testimony, and a PR machine designed to eat innocents alive, I was never blindsided again.

  No longer the unprepared little girl, I learned the history of the implant developers and their sophisticated marketing machine. I was armed with facts and the truth. This time, I was prepared for the minefields I danced into.

  By agreeing to appear at this press conference, I launched myself into a cause I had prepared for after a lifetime of lessons about honesty and giving back, having a voice, and finding one of my life’s purposes—poster girl, challenges, public criticism, and all.

  THE ENEM
Y LIST

  The press conference was at one of the oldest historical establishments in Washington, D.C.—the Old Ebbitt Grill. I didn’t have time to enjoy the ambience and significance of the pub once frequented by Presidents Grant, Cleveland, Harding, and Theodore Roosevelt. I had a speech to deliver and I was nervous. This was bigger than the rally on the street; cameras and microphones were lined up everywhere. People always think because I am an actress, public speaking should be easy. It’s a completely different ball game for me. It’s not like acting at all. It’s you out there, not a character. Besides, I wanted it to be perfect, of course. This was too important to screw up.

  There was some commotion at the press conference when the “other side” tried to crash our party. The machine’s “people” came to the grill and tried to get in. I was surprised they even cared. Dow had always denied any wrongdoing, so why did they care about this press conference so much? Made me wonder what they were hiding or what they were afraid we might shine light on. I found out they had hired a $10,000-a-day PR firm to defend them. This was fascinating and a bit scary to me. I was just Jane Q.—or now Mary Q.—Public here to tell my story, but the real story only got bigger and more aggressive.

  One of the stories could have been generated in a Hollywood script mill, for all its irony. John Swanson had worked for Dow Corning since 1966. In 1976, he had been assigned the task of forming their Business Conduct Committee, designed to prevent unethical activities by Dow employees and its representatives. John was at the conference, and as I learned his backstory, the ironies and bravery of this man astounded me.