My illness was crushing me personally and professionally. It hurt my marriage. I felt my life force slipping away, and I didn’t know what was happening.
As my physical discomfort worsened, I withdrew into a cocoon. Chronic pain—especially if you are undiagnosed and trying to buck up and hide it—can mentally and physically disable. I was not the person Rob had married, and that contributed to the unraveling of our marriage. Not having the energy to take care of it all made me feel more like a failure. We separated after seven years of marriage, then divorced. It was a terrible time.
It was the beginning of realizing that constant doing wouldn’t make it turn out my way. I made a lot of mistakes and learned that trying to control the outcome of a situation doesn’t make it work. Trying to hold it all together can help it fall apart, another lesson for me.
We were filming one of the reunions, A Walton Easter, at that time. Michael Learned was a great comfort to me. I cried on her shoulder. She and Judy helped me realize I had to be strong for Sydnee.
My health went up and down, and I went to different doctors for the various symptoms and received more prescriptions. No one could tell me what was wrong; they just treated the symptoms with different pills. When I look at the deaths of celebrities recently, I see I could have easily fallen into the trap of taking pain medications, then denial, and eventually dying from the effects on my body. If I had taken all the medications I have been prescribed over the years, I believe I would have been dead a long time ago. A few of the medications I was prescribed were taken off the market when people died from them. Once again, that safety valve caused me to be a “bad” patient and not take the various pills all the time. That safety valve and the fact that I was a mother—and someone depended on me—probably saved me.
My friends had been reading in the press the emerging information about the dangers of implants. I was in complete and total denial that my symptoms might be caused by my implants. I didn’t believe I was sick. The doctors couldn’t even tell me what was wrong, so I didn’t want to hear my friends’ concerns. Besides, if it was the implants, then my rheumatologist would have told me, right? These were supposed to “last a lifetime,” the literature promised. I continued to get worse.
DOWN THE TOILET
During this time, I wasn’t booking any jobs. I would go on auditions for commercials and guest spots. I would try to pump myself up for the auditions, but I didn’t interview well. I was mad at myself and frustrated at my inability to perform.
I found out I lost jobs because I wasn’t the “me” they knew, and I didn’t look the same. My hair had been falling out, and I was tired all the time. My agent later told me he was getting feedback that I looked tired, and just wasn’t the same. They thought it was because I had had a baby and was sleep deprived, so they didn’t say anything to me. I got nervous and tried harder at auditions, which is never good. I also carried my financial fears into the room with me. Desperation never reads well.
I started to run low-grade fevers, like I had the flu all the time. My muscles ached and my joints throbbed. To doctors, it seemed like the flu. I got painful ulcers in my nose, which I couldn’t quite explain to a doctor. Every day in the shower, more hair was in my hands and down the drain. I got weaker. I was not the energetic Mary anymore.
I developed lumps in my back and leg. They were hard, rocklike masses under my skin. My dermatologist removed them. She was surprised at how much scar tissue there was in these things, it was so unusual. She thought maybe they were ingrown hairs that created scar tissue. No one thought to test for silicone. Now we know the body walls-off foreign objects with tissue to protect itself. With implants, this scar tissue can harden, causing pain and disfigurement. It’s called capsular contracture.
Silicone is like goo. Implants have an oily feel to them. That’s the silicone leaking out of the implant. Traces are so minute, they can seep through the wall and travel through your body. One doctor explained it’s like the trace of a snail’s path. As the silicone migrates through your body, it’s impossible to see the slime and remove it all. Later, I met women who had silicone found in their uterus, ovaries, and liver.
While all this was going on inside my body, my career—what little there was—went down the toilet.
VANITY GIRL
Somewhere in my subconscious, I felt if the news reports were correct about the dangers of implants, then my illness was my fault. I blamed myself for years. My situation reminded me of Erin in “The Burnout.” Erin begs John-Boy to risk his life and reenter their burning house to save her favorite party dress. We both chose vanity over substance. We both deserved to be punished. Why didn’t I accept myself as I was?
One day, my thespian friend whose surgeon I’d used called me. She had news she felt the responsibility to share with me. She had been ill and had her implants removed. They’d found a golf ball–sized cyst behind her implant that had never shown up in a mammogram or breast exam because the implant obscured it. She waited a terrifying three days to see if she had cancer. Luckily, she did not. She told me her health had started to improve, and her symptoms had diminished after she had her implants removed. She also told me her son had been ill. This unnerved me; I thought of Sydnee and her physical challenges when she was born, the low Apgar scores, not breathing, inability to suck or swallow properly, and the colic. It’s one thing to make a stupid decision that hurts you, but to hurt your baby? Unforgivable.
I hung up the phone, astonished and stunned. What she said had frightened me. I couldn’t imagine having another surgery. I’d look at my breasts and wonder, can these really be the problem? It was so hard to make the decision to have them in the first place. Now, to cut myself open again? I couldn’t bear the thought. I fought the truth, but soon I was so ill, I couldn’t lift my Sydnee. I couldn’t walk up a set of stairs without shooting pain in my legs. It was like being stabbed with an X-ACTO knife with each step. As time went on, I felt like my life was slipping away.
I started asking questions, doing more research. One day, I asked my rheumatologist if she thought my implants were a factor in my failing health. She told me it couldn’t be the implants, that more than half of her patients had them. Hello? Over half your patients have them and there’s a “supposed” link to implants? I still wanted to trust her, like my dad had wanted to trust his doctors.
Then something extraordinary happened. When she left the exam room, her nurse leaned over and whispered to me, “Run! Run and get those things out!” What does she know? Red flag!
Now I knew I had to find out the truth. The rheumatologist had referred me to another doctor for a second opinion about whether I should have them removed or not. I was so stiff and weak, I could barely climb onto his exam table. His advice? “You won’t feel like a woman if you have them removed. They take breast tissue with the implant removal, so you’ll be smaller than you were before. You’ll be depressed for two years if you take them out. Don’t do it.”
I already didn’t feel like a woman. I didn’t feel like a wife or a mother, either. I felt like a loser, and I was starting to believe it was my own fault. I’d messed with my body. I’d hurt myself and possibly my child.
After the visit to his office, I was in the shower, looking down at my breasts, and I knew I didn’t want to be cut open again. I hid, crying tears down the drain, as I had done so often before, trying again to maintain the image of being pulled-together and perfect.
I closed my eyes, asked for help, listened, and then I knew. The highest part of me, you know, the one we don’t always listen to, realized the answer. I knew I had to eliminate every possible variable. I felt like one pint of lifeblood after another was being drained from me as I headed slowly toward death. I had to find out if the implants were making me sick.
I read manufacturers’ studies that said there was no link. Their bought-and-paid-for research implied I was crazy, and my illness was caused by something else. I knew I had to fight to find out what was wrong with me. If nothin
g else, I had to fight for my baby girl. Sydnee had started to exhibit more odd symptoms.
I had a mammogram and ultrasound. Neither indicated my implants were ruptured. I got a breast MRI. It also showed no proof of rupture, but the doctor told me “off the record” he believed my implants had ruptured.
I was off to more surgeons. One doctor examined my breasts and said, “Those look great. I wouldn’t touch them, at least not with a scalpel.” (Insert lecherous laugh here.)
The next plastic surgeon just wanted to replace them. “Why do you want them out, anyway?”
“I feel tired all the time. I’m sick, my joints ache, my muscles hurt, and I have no energy.”
He said, “You’re getting older, that’s natural. I feel the same way.”
I looked at this balding, older man and said, “Yeah, but I’m thirty-one. I’m not supposed to feel this way, yet.”
The more women I talked to, the more I found out that I was not alone. The more I read, the more I wanted them out. I didn’t care about big boobs anymore. If I had learned anything from working on the show, it was perseverance.
Some of my earliest lessons from the mountain came from witnessing the noble strength of Patricia Neal doing The Homecoming after her many strokes, and Ellen Corby’s powerful return to the show after her own stroke. Even when Olivia had polio in “An Easter Story,” which we filmed in the first season, she kept fighting. And I had watched my own father’s display of dignity while he fought cancer.
I’d learned from the best, and I knew how to fight. I began to find my voice, to trust my gut, to rely on my instincts, and to listen to my angels. Unbeknownst to me, I had just begun the battle.
BOOBS OUT
I held to my decision, even though doctors said it wasn’t necessary and there was no link. Here’s the “crazy” label again. I made the appointment. Unwavering, I told another doctor point-blank, “Look, I don’t want to replace them. I’m over it, trust me. I feel like I’m dying. Please take them out.” He argued that I would be happier with replacements. I said, “You don’t get it. I’m dying here. Just get them out.” He finally believed me.
I was so relieved to be taking action to get better possibly. Then my presurgery blood work came back abnormal. I had a coagulation problem, which I later learned is common in lupus patients. The doctor canceled my surgery and sent me to a hematologist. After ten years of falling down this mountain, I was at the bottom, crushed by rocks, sobbing. I just wanted it over.
Finally, on March 17, 1994, yes, Saint Patty’s day, I had the implants removed—ten years since my surgery to have them put in.
This time, I had done my homework. I elected to have an en bloc total capsulectomy. That’s where they remove the whole implant, with any scar tissue, so nothing leaks out into the chest cavity. I’d heard horror stories of implants being cut open in the chest, spilling the contents. The silicone would have to be scraped from the chest wall, which could take hours. I was also lucky enough to have a mastopexy, a reconstruction to cut away extra skin and rearrange it into a smaller breast.
The surgery took longer than expected. When my doctor cut them open on the tray, he found my implants had completely ruptured inside me. There was no outer shell left, just plastic bits stuck in the silicone like pieces of a ziplock bag suspended in goo. The only thing preventing the gelatinous mess from spreading more was my own scar tissue. However, my body had had access to the silicone seeping out through my healthy tissue for years. Hmm, wonder where it all went? Even with the ruptures and reconstruction, the removal was actually easier than the original surgery.
REALITY CHECK
Soon I was fully recovered from the removal procedure; yet I was still sick. The damage had been done. The downward spiral continued, and I wanted to know what was wrong with me. There was a class action suit against the implant manufacturers for the health problems caused by these faulty devices. I needed to submit my medical records, and I wanted my doctor to include in them my diagnosis. I wanted to know one way or another if she was going to give me a diagnosis of lupus. I asked her over and over. Finally she reluctantly diagnosed me, threw a few more prescriptions at me, and told me something that shocked and appalled me.
She told me she really “liked me as a person.” She hoped I would continue to be a patient, but she thought I should know that she was being paid by implant manufacturers to testify in lawsuits against women like me who became ill with implants. I was livid. How could she? How could she do this to women? And for money? I felt betrayed and deceived. My mind flashed back.
If she had treated me for lupus while I was pregnant, maybe my postpartum days would not have been so horrible. I could have had help. I might have felt less crazy. Women with lupus often have a flare-up after giving birth. I flashed to the image of her telling me I was “stoic,” hard to read. Me? The crybaby, the “sensitive” one? It all started to make sense. I had been the trusting sixteen-year-old girl believing her when she said, “There’s nothing we can do.” Not anymore.
My rage kicked in and I decided there must be something I could do. I wasn’t going to take this one sitting down, not again. I could yell, scream, and warn women what had happened to me. I’d been thrown off the cliff and careened on a rockslide headlong to the bottom as my illness hurt my marriage, life, and career. I didn’t want the same thing to happen to anyone else.
Sifting through the rubble of my life, I eventually started to find my voice to use the machine I understood. I called Entertainment Tonight, and they allowed me to produce a segment on implants. I went on other shows to tell my truth. I immediately started getting letters from women who were sick. I got calls from so many people, I was surprised and astonished that the harm was so widespread. So much information surfaced about the ways faulty implants had hurt other women, I couldn’t process it all.
I reflected on what I’d been through and thought about the surgeon who assured me implants were safe. Why hadn’t he warned me? I later found out part of Dow Corning’s strategy was to try to influence every rheumatologist and epidemiologist they could. They countered by focusing on epidemiology because it is an abstract discipline, not widely understood by the general population. Part of their defense strategy—fly under the radar screen. It worked. They also got the American College of Rheumatology on their side, and ACR issued a “position statement.”
Upon further reflection, I realized if I’d known the deception and the horror I would go through, starting with rashes I would break out in within twenty-four hours of surgery, be plagued with health issues for—let’s see, it’s been twenty-five years so far—I never would have wanted implants.
If I had been told there was a “supposed” link to autoimmune disease, fevers, flu-type symptoms, chronic fatigue, joint pain, hair loss, memory loss, fibromyalgia, muscle aches, and swelling, I never would have considered having implants.
If someone had told me that Dow Corning, the maker of implants and the silicone used by other manufacturers, including my Memes, had manipulated their scientific research, or that I might need to have them replaced because they were faulty, I never would have wanted implants.
And if I’d known that all implants need to be replaced every nine to ten years—the equivalent of a major surgery every decade until you die—I never would have considered them.
If I knew that Bristol would pull the Meme because the outer layer of foam was made from a known carcinogen, TDA, believe me, I never would have had implants.
Despite my belief that everything happens for a reason, I wasn’t sure what this lesson was about. I knew I didn’t want anyone to go through what I endured for the last ten years; I knew I needed to take action on behalf of other women who needed to know the truth.
First I needed time to heal.
10
WHAT’S NEXT?
My experience of healing was a slow road. I would have a good day, and the next I couldn’t get out of bed. I never knew when I would have a flare-up and it made life difficul
t to plan. I hid a lot of symptoms, so I wouldn’t alarm my family. Nothing much had changed, right? I was still keeping secrets and wanted nothing to prevent me from getting work.
There’s a metaphysical belief that words are powerful, so I started to be very careful about what I said out loud. I knew how serious the disease was. I didn’t want to give the disease “power.” I was afraid if I said, “I have lupus,” it would make it true. Besides, maybe that doctor was right. Maybe I was crazy and didn’t have it, after all. I avoided, ignored, and fought lupus for a long time.
Then, after thinking I was tricking the Universe, someone told me she used the words “I am healing lupus.” The truth is, until I said the words “I have lupus,” until I owned it, so to speak, did I start to heal. Once I embraced it, talked about it, only then was I able to start healing and deal with it.
BOYCOTT
About this time, in 1995, I received a call inviting me to participate in a rally in Chicago. They were having a boycott march through the city—complete with a mock coffin to honor the women who had died from their complications of silicone implants. I had no idea women had died. Christy, a group leader, asked me to speak at the rally and a press conference after the march.
Public speaking was not my thing, and radical acts of protest seemed to cross the line for this girl who always wanted to be socially appropriate. I might make someone, even Dow Chemical, the powerful company that brought us Agent Orange, mad at me. Oh no!
However, as much as I worried and argued with myself, I decided to go. I wanted to be with women who had gone through what I had. I wanted more information—to share and to compare experiences. Hey, maybe I wasn’t so crazy, after all. These brave women had been creating support and research groups, while I was in denial, hoping my illness and symptoms weren’t caused by my implants.
Lessons from the Mountain Page 21