I wrote my speech and was reminded that boycotts, marches, and speaking out were rights the founders of our country had given me. I packed my nerve and a bit of mountain strength and headed to Chicago.
The march went well—the coffin was a bit scary—but we weren’t arrested, and we attracted a lot of attention. I was fighting my good-girl image all the way. What would people say? Would I be judged or challenged? In downtown Chicago during the rally, someone handed me a bullhorn and asked me to address these brave women. There I was, facing women who were mirrors of me. We all had had implants, were all sick, and we were protesting a company that had lied to us. As I looked in their eyes, I saw myself reflected back and knew my life was changing. I didn’t know then how much or for how long, but it was a mountain I had to climb. Get out the ropes, picks, and climbing shoes…let the boycott begin.
COINCIDENCE AND FALLOUT
I had no idea what I was up against. I just wanted to help and speak about my own experiences. Several Gulf War veterans showed up in support. They had similar mysterious health issues and weren’t having any luck getting their voices heard. Could we all be victims of chemical poisoning? I listened in amazement to one story after another, each so similar. I wondered what had really happened to all of us.
The press conference was a lesson in just how big this game was. I spoke about how Dow Corning had been found liable for their implants. As we handed out a list of Dow products, I encouraged everyone to join our boycott until we learned the whole truth.
The manufacturers just happened to schedule a press conference in the same hotel—at the same time—right down the hall from ours. Co-in-ki-dink? No. Susie, one of the organizers, told me this was common. The company had hired a huge PR firm to handle their press. They would find out what the women were up to and plan a counterdistraction. I was a bit taken aback. I would soon learn this tactic was a pebble in the avalanche to come.
THE PRECIOUS GIRL
The experience had taken its toll on my health, career, and marriage. My marriage ended and my health continued to go up and down. I was tired and sick, but I was still a mommy, and Sydnee needed me. She was a great sport, and we became a team and got through it together. Part of our journey in coping with my illness together was writing a story about kids whose moms were sick. She gave it the title, “I Hate Lupus Because It Makes My Mom Boring.” It was sad to me she felt this way, but we did our best.
We were quite the pair. Because of a photosensitivity I had developed, whenever I went outside, I wore special sunscreen clothes to cover my body and block the sun’s rays. I loved to take her to a local water park once a year and she got used to the hats, long-sleeved shirts, and pants. She helped put on my sunscreen and became accustomed to having the only mommy who went in the water fully clothed with a big hat on. We got used to being different. We both felt silly at first; but we were so glad to be at the park, the staring didn’t matter.
When the Harry Potter books came out, we’d climb into my bed with our chamomile tea and take turns each reading a page. Fortunately, all of our kooky accommodations to my challenges made us stronger as women and deepened our mother-daughter bond.
The downside was the roller-coaster ride. I was a single mom now and had to get it together. I felt guilty; I wasn’t able to be the mom I wanted to be. My muscles and joints ached so much, I wasn’t motivated to exercise. Chronic pain takes its toll on your temperament, the meds make you gain weight, and I was miserable. I lost my temper at times and still felt crazy moments.
I remember when I had my first lidocaine shot, deep into my hip. I could walk for the first time in years without shooting pain. I said, “I would be such a nice mommy if I felt like this all the time. I would have so much more patience.” The pressure I put on myself to be a model mommy made me more ill. Depression soon set in. I went to a psychiatrist for help with the common depression women with lupus feel, and more meds were prescribed. Then another boulder let loose and rumbled toward me. Sydnee started to exhibit signs of illness.
Sydnee’s attention span was off. She was having trouble focusing at school, causing suspicion of attention deficit disorder, ADD. At night, she started to vomit for no apparent reason. She had no fever or flu; yet she would go to bed, lie down, and vomit. She slept with a Tupperware container in bed with her for years.
I found out many of the second-generation implant children were having some of the same symptoms my daughter was having. I was terrified. The mothers could remove their implants, but if a child was born to a woman with implants, it was too late. There was nothing to take out of the children. Their bodies had to deal with the silicone that traveled into their bodies in utero or possibly in the breast milk.
I spoke with and heard of many other silicone moms whose kids had chemical sensitivity, joint pain, lupus-like symptoms, and esophageal issues. Where was the science? One lone doctor doing any research at all on these kids was in New York. Through their PR machine, the chemical company still insisted there was no link to any illness from implants. I found that hard to believe, though. There were too many sick women and kids for this to be a coincidence.
My frustration brought tears that reminded me daily there was a possibility I had hurt Sydnee. I watched her suffer and hated myself, thinking my idiotic vanity could be the cause of my baby’s misery. I felt sorry for myself, my lost marriage, my career, my baby girl, and the years I felt lost to illness. I continued to research the history of Dow’s own studies. One of the whistle-blowers with a conscience, the dear Tom Talcott, looked into my misty eyes and said, “One day, you’re going to stop being sad and start getting mad.”
He was right. I decided I’d had enough of the pity party. I vowed to learn more. I thought if I knew what had happened to my body and to Sydnee’s, I could fix it. Besides, I wanted to help my daughter and other women and children who might have been harmed.
DOCUMENTING THE TRUTH
I had already been producing films, so I turned my energy toward making a documentary about how these companies were able to sell a harmful product. I enlisted my friend June Dowad, who is a documentary filmmaker, to help me. The more we discovered, the more our heads swam with the information. June and I learned alarming facts in our research.
As it turns out, the silicone implants were grandfathered in for usage when devices came under FDA jurisdiction. We were shocked to find out implants were never FDA approved. How could that be? There was no proof of their safety. The idea was to have studies prove their safety, and approval would follow. These studies were paid for by the manufacturers, and none were long-term. Dow Corning was publicly saying they were safe; internally they knew there were issues with the implants. Internally they would start a study, but the follow-up was not thorough.
The manufacturers began paying for the “science.” I learned later that some manufacturers were frequently tipped off before inspectors arrived so they could hide the faulty implants in the ceilings. No implants were adequately researched for their potential to do harm. Many implants had different “recipes” to try to avoid ruptures and leakage.
Were all these different chemical concoctions what gave us so many different types of symptoms, illnesses, and bizarre reactions? How would we ever find out the truth?
THE UP AND DOWN OF ILLNESS
During this time, I worked hard to heal and be the mommy I wanted to be. I relied on my spiritual side, the experience brought me closer to my Source as I was forced to slow down and take stock of my life. I reevaluated who I was and where I was going. I still had the same goals, but my life was forever changed. I wondered why I ever made the decision to get implants, and why women feel they need to change themselves, their bodies. Hadn’t I spent most of my life changing myself to try to fit in? From my laugh, to my weight, to my bra size, I had always looked outside myself for approval. Why didn’t I ever believe I was enough? I had tried to fill the hole inside me with diets, dress sizes, acting success, and eventually silicone. Through my own boulders o
f inadequate feelings, I destroyed my health and hurt what mattered to me most.
As I reconnected with my own spirit, I learned about a Source that I didn’t need to prove anything to in order to be accepted. A God that was loving, not angry and looking for my “goodness” to be proved at every turn. Could it be possible? It was a difficult concept for me, and it took me far away from the vengeful God I was raised to know.
I started to realize I had more to offer as a person. I began to fill the hole in my self-esteem and worth as a woman and a mother. In my meditations, a mantra came to me one day. It was clear as a bell, like a little voice whispering in my ear: “I strengthen my Faith and trust in Love.”
The trust part was the hardest for me, still is. It was hard for me to surrender; I was used to protecting, hiding, and even submitting to the whims of others. I had a lot of work to do to trust. I started to understand that when I did trust, the Universe brought me everything I needed.
Yet, I still felt deceived and abandoned. As the words kept coming to mind, I started to work with them through my resistance; then I would repeat them more and more. It was a battle, but—somewhere in me—I knew I needed to change. I wanted to find my own strength instead of relying on someone else’s opinion of me. Eventually these simple words helped me. I still say them over and over, especially when I can’t sleep.
“I strengthen my Faith and trust in Love.”
Serendipity would flow when I did trust, and help would appear almost magically in the form of people with advice or suggestions. One day I was stepping off an elevator and ran into Leslie, a lupus activist I’d known when I had been the celebrity spokesperson. We shared the normal chitchat, and she asked how I was. I told her a little bit of what was going on with my health and she encouraged me to call Dr. Daniel Wallace, the respected lupus doctor. He would be able to get to the bottom of what was really going on with me.
Leslie said Dr. Wallace would remember me and I should call. He ran exhaustive tests, studied all my records, and confirmed that I did indeed have lupus. He started me immediately on treatment that reduced my pain and helped me function better. I was so relieved to finally have a doctor treat me and not make me feel crazy. After ten years of not knowing what to do, I was finally getting help. And I was getting more confirmation to our suspicions that something was indeed wrong with the silicone implants. Dr. Wallace told me he had treated other women with implants who had similar health issues.
LUPUS
Lupus is a connective tissue disease that affects the immune system; it’s classified as an autoimmune disease. It is the opposite of AIDS. Instead of a deficiency, the body makes too many antibodies and fights to break the body down. Dr. Wallace said it’s as if the body is allergic to itself and sends out antibodies against otherwise healthy organs. There are two kinds of lupus: external, or discoid lupus, that affects the skin, and internal, or systemic. Dr. Wallace diagnosed me with systemic lupus erythematosus, or SLE.
Chronic fatigue, sleepless nights, low-grade fevers, mouth and nose ulcers, hair loss, joint stiffness and swelling, photosensitivity, headaches, sleep loss, muscle pain, and dry mouth, skin, and eyes were all symptoms of lupus. I had them all.
Lupus is the prototype of all autoimmune diseases. So when a cure for lupus is found, it will help many other diseases. Fibromyalgia is a symptom of lupus, and I had it. Sjögren’s syndrome, a collagen disorder, is a symptom of lupus, and I had it. Chronic fatigue, another symptom, and I had it. It was a bit confusing, since there are entire nonprofits set up for each of these diseases, but I had them all—as many lupus patients do. It’s also why lupus is often difficult to diagnose. There are so many symptoms; yet the patient often doesn’t even look sick. After all these years, it’s amazing to me when lupus is the first thing the fictional Dr. House looks for in a patient. They are always running a lupus panel and ruling out lupus on that show. We’ve come a long way.
I began to access my spiritual beliefs to get a grip on my intense emotions. I meditated on my body and visualized it being whole and healthy. It was humbling to have my body say, “No more. If you’re not going to slow down, we’ll make you stop altogether.”
Since my body was making too many antibodies, a visual came to me one day. I saw my brain as the office of the factory giving antibody orders to the “machine.” It would release them on the conveyer belt. I saw a man running the operation and he was crazy busy making these extra antibodies, so I slowed him down in my visualizations. I even pictured him taking a nap on his desk to slow the process down. Then I saw a regular order come through. He calmly told the machine the perfect amount to send out. This actually calmed me down and helped me toward healing. I felt better, “mind over matter” as they say.
I also sat in quiet meditation, thinking of the peace and calm of nature and places I loved. I cut out pictures to remind me of my favorite things and placed them in my view. I stayed as positive as I could to deal with each flare-up.
While I tried all kinds of potions, vitamins, cleanses, and Eastern medicine philosophies, I never forsook Western medicine when I needed it. Acupuncture was also very effective for me. I created a balance to work with everything to make me better.
My friends and family were an incredible support. My dear friends gave me acting work to help me keep my health insurance (you know who you are, and I am eternally grateful). I felt blessed to have health care and live in a country with access to great medical care.
Still, it was hard for me to ask people for help. I felt weak and like a failure for having to ask for help. I mean, wasn’t I the one who was supposed to be giving back?
I did give back from a very personal place a few years later. Dr. Wallace was forming a group to raise funds for lupus research. He asked me to be the president of what we called Lupus LA. At the time, I was hesitant to add another thing to my plate. I often joked I had to do it, doctor’s orders, right? I was glad I did. The other founding members are another amazing group of people I feel lucky to have learned from, and to have worked with for such a worthy cause.
Lupus is a tough disease with no known cause or cure, only treatment for symptoms that can also make you ill. Over a million Americans have some form of lupus. The most affected are women, and the highest incidence is among African Americans or women with Caribbean heritage. Because a cure will help so many other autoimmune diseases, it’s an especially important cause that deserves increased funding and research.
THE WOOLLY MAMMOTH
As time went on, it became more obvious there was something going on with my daughter. We had trouble with schools and teachers. Her teachers would trade her out to another teacher after her first few weeks of school. Even for a first and second grader, she got the message she wasn’t liked by those teachers. One day before school, she was crying and said, “I just love my teacher so much. I just want her to like me. Why doesn’t she like me?” It broke my heart; she sounded so much like me. I didn’t know what to do but hug her, love her, and take steps to help her, but she still struggled.
I wish I had a dollar for every teacher who gave us the “look” followed by “She’s an only child, isn’t she?” What did that mean? After dropping her off at school, I spent many mornings seeing her precious face full of confusion and trepidation. I wanted to make it all better for her. I was wracked with guilt for my part in it.
Now it was Sydnee’s turn to visit doctor after doctor. I knew what she must be feeling with all the poking and prodding. One of the scariest tests for me was a brain MRI when she was about eight. She told me recently it wasn’t scary for her at all, but she thought my approach to the test was cute. I think I was a nervous mommy. Who, me? Overdo it? Try too hard?
I tried to be creative to help her get through it. We had just watched a special on the woolly mammoth. Since you can’t move during an MRI, I told her we would play a game. I told her to pretend she was a woolly mammoth frozen in the icy tundra, so she wouldn’t move.
“Syd, you’re going to hear
buzzing and thumping, but those are just the native people digging down to get to you.” I thought of the images we’d seen on the television show. “You’re also going to hear them singing and pounding their drums, hoping to find you. If you lie absolutely still, they’ll bring you out and celebrate you. You’ll be your mammoth self.”
What I’d really given her was her first lesson in accessing a character for a “role.” She followed my every direction and lay perfectly still for the procedure. When they pulled her out of the scary tube, we celebrated “finding” her, and I was so proud of her.
From this test and some others, we found that her brain was slow to fire in some areas. Off to more doctors. I’d been through this round myself and wasn’t about to surrender to medications. The typical assessment was ADHD and everyone wanted to put her on drugs. I was against labeling her and medicating her. So many kids were being given pills; I didn’t want that for her.
We tried behavior modification, Chinese herbs, acupressure, tough love, and many different doctors and practices. Some worked, some didn’t. When it became clear Sydnee was falling behind in school, we worked harder.
Homework lasted hours, and usually ended in tears, hers and mine. I tried to help her enjoy the process with creativity, incorporating colorful tactile elements to reach all her senses. We made the solar system in toilet paper one night. Still, she would spin and spin on the floor. One night, I heard her crying and went into her room. Her head was jerking back and forth.
“Make it stop, Mommy!”
My heart died for her. I taught her methods to calm herself by using breathing exercises, visualizations, and meditation.
As a mother, this was frightening to me, made worse because with every symptom, I blamed myself. There wasn’t much research being done on the women who had illness after breast implants, and even less for the kids. Sydnee’s problems launched me from being sad into being mad. I committed myself to being an advocate for my daughter. I would fight for her the way I wished I had been fought for. When I was young, I’d felt pushed and pulled. I didn’t want Sydnee to feel that way. I was a frustrated mommy, and I was tough and overbearing at times. Looking back, I made mistakes and pushed her too hard, but I never gave up. I always held the possibilities out to her, not the disabilities.
Lessons from the Mountain Page 22