Eventually, I decided the hand-repair surgery was not for me. I would only get some cosmetic improvement, not enough to justify the invasive surgery. I could do everything I wanted to do with my hands: garden, writing, opening most jars. The only thing I couldn’t do was talk with them like I once did and so I continued to hide them as much as possible on television, always looking over my shoulder to see if anyone was watching. Shelly assured me my hands were not that noticeable. I wanted to believe him, but I knew his vision was clouded by love. Spread out in front of me I saw veined, slanted, bulbous jointed hands—not what you want to see on a television fashion reporter.
Toward the end of my mother’s life, she was too sick to notice my hands, yet I still knew that they were not her definition of being perfect. But somehow, I was getting used to them. I had let go of the “perfect” and now embraced the “healthy.” Perfect didn’t mean much when you were really sick. With the distortion of my hands, my priorities had changed. And yet still, I kept my secret intact. I wasn’t that secure . . . yet.
The secrets in my family were now in the open. With my dad’s passing in 1961, I finally found out where he was for the six years he went missing. He had asked Shelly to go through his files at the very end of his life, and it became obvious that there was a six-year period of files missing. My dad was a meticulous record keeper, so the omission was glaring. And where was his college diploma?
On my next visit to see my mom and my aunt, my sister Pam accompanied Shelly and I. We sat in my mom’s living room and talked about my dad, and then I asked the question, “Where was he when I was young?” My aunt and mom both looked down at the floor and frowned. “You don’t want to know, Chrissie,” they almost said in unison. But I did want to know. I needed to know because somehow in the back of my mind part of his disappearance must have been because of me. I wasn’t good enough, he didn’t love me enough, or I did something to make him leave. If it wasn’t about me, why would he have left me?
Slowly the story came out. My sister Pam wrote it all down on paper, tears streaming down her face. Shelly stared in total disbelief. I tried to take it all in but it was overwhelming. My mom and aunt still stared at the carpet as they talked.
My dad, the man who read mathematical books I couldn’t even begin to comprehend, who taught me how to use a slide rule because he wanted me to be an engineer, who made a successful career as an engineer and had many patents for water-saving flow-control devices, had been in prison. Six years of his life behind bars at San Quentin because he stalked my mom and held my aunt hostage at gunpoint. If he were alive his rationale would be that my mom had left him, taking me when she found out about his affairs and he was trying to get her back.
I never knew anyone who was even arrested. My brain heard what was being said, but it was as if they were talking about someone else, a movie. A TV plot, not my dad. We had never been close. How can you be close to someone who is gone from the most formative years of your life?
And sl]owly, over the next month, maybe the next year, the pieces of my shattered childhood puzzle slowly fell in place. The biggest revelation of all was that it wasn’t about me. I now knew that my mom’s decision to board me out was made based on her needs, not mine. And my dad made his bad choices because he thought he was trying to save a marriage he had previously destroyed. His intelligence was overruled by his passion. Now I understood that my dad didn’t take me into consideration when he made his bad choices. It wasn’t about me. None of it was really about me, I just happened to be in the way at the time. Overall, the knowledge empowered me because I now knew I wasn’t the cause. Still, when all the shock had settled, it mostly made me sad. Sad for what could have been. Sad for the lost childhood. Sad for the minimal relationship I had with my dad. Sad for all the lost years with my mother. I wasn’t sad for me, but for all the lost possibilities of how life could have been better.
My conversation with President Clinton inspired me to become active.
22
A Makeover for Arthritis?
SEPTEMBER 2010
The word arthritis is a sixteenth-century Latin term that came from the Greek words for joint (arthro) and inflammation (itis). For most people, the word conjures up images of the old, crippled, and disfigured—all the words I feared when I heard my diagnosis more than twenty years ago. I had so many misconceptions about the disease, just like so many people still do today.
No wonder. During my twenty-one years living with arthritis and through my research for this book, I’ve seen mostly pictures of elderly people in hospital gowns with crippled hands and hopeless faces. Even with the pioneering magazine Arthritis Today and the Arthritis Foundation making such encouraging headway to forge new, positive images for arthritis sufferers—which they have—book and magazine publishers, the Internet, and advertisers often still use the old stereotypes.
Millions of people suffer from arthritis—the Arthritis Foundation estimates forty-six million people. One in five adults in the United States report having doctor-diagnosed arthritis. According to the Centers for Disease Control and Prevention, an estimated 506 million adults in the United States reported being told by a doctor that they had some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia. But the reality is that arthritis is no longer a disease that strikes just the elderly. In the past, children, teens, and young adults were misdiagnosed because doctors didn’t even consider arthritis as a possibility for these younger patients. Today all that has changed. Children, young adults, and middle-aged people have arthritis. One in every 250 children under the age of eighteen has arthritis.
The other reality is that more and more people are living full, wonderful lives with arthritis. More than fifty percent of rheumatoid arthritis patients are in remission because of research and the testing of new drugs. Fewer patients with osteoarthritis are as well controlled but researchers believe that in the next ten years the percentage of these patients with controlled symptoms will approach the fifty-percent mark they’ve reached with rheumatoid arthritis.
Arthritis is no longer a life sentence to degeneration, disfigu- rement, and hopelessness.
So what will it take to make the public aware that there is hope and life for arthritis sufferers? Awareness. Hollywood celebrities have arthritis. Academy Award–winning actors have it. Famous athletes have it. Chart-topping rock stars have it. High-powered politicians have it. And yet, over the years, only a very few minor celebrities have come forward. Of all the diseases, celebrities shy away most from arthritis because of all its negative connotations. Like me, they don’t want to be put in that “old and crippled” category. They fear what it could do to their career, to their public perception.
It’s human nature. And the question I ask myself is how can we change that perception? How can we give a new face, maybe even a new nickname to arthritis and take it out of the sixteenth century and into the future? Arthritis has changed, but the perception hasn’t kept up with the changes. Celebrities—major celebrities—and others need to come forward to put a new face on this disease.
In September 2010 Shelly and I attended the Stand Up For Cancer live television show at Sony Studios. My son was working on the production and gifted us with two of the much-coveted tickets to the pre-party, the show, and the after-party. The list of participating celebrities was staggering. More than fifty of the most renowned personalities in TV, film, sports, and music came together to make history. They included George Clooney, Michael Douglas, Jennifer Aniston, Meryl Streep, Lance Armstrong, Halle Berry, Hilary Swank, Forrest Whitaker, Keanu Reeves, Mariah Carey, Beyoncé, Sheryl Crow, Gwyneth Paltrow, and Denzel Washington. The live show was on all the major networks, cable networks, and the Internet and was watched by millions of viewers who donated generously in a tight economy to move research forward. Today it’s not only okay to come forward with cancer, it’s admired. Celebrities going public with cancer have made a difference not only in raising money for research but also in creating the p
erception that cancer is no longer a death sentence. You can beat it. There is hope. Meanwhile, arthritis is still shrouded in stigma—stigma that kept me in hiding for more than twenty years.
I remember attending an Arthritis Foundation black tie fifteen years ago honoring one of my close friends. She was the only person, other than my immediate family and my television assistant, who knew about my arthritis. I sat at a table for twelve, my feet throbbing underneath, pain pills ready in my jeweled evening bag. I listened to the incredible stories of the many patients who spoke. There was camaraderie in that room, but I wasn’t part of it. I had separated myself, unwilling to publicly join the arthritis group. I looked around at a room of people supporting each other, supporting those suffering my disease, and yet I remained silent. I was the television personality with the top ten “must have” fashion lists, the one who taught people how to put it all together. I believed that hiding my disease was mandatory for my success. Would viewers find my television advice believable if they knew that my own body was falling apart? Pretending to be one thing and actually being another haunted me. I felt guilty.
I was on the outside of where I needed to be. I should have been up there at the podium, sharing my story, doing what I could to help others. But I was afraid. Afraid people would look at me in a different way, no longer accepted into the world of style and television. I was afraid people would see me on Shelly’s arm and whisper, “You know, she’s almost crippled with arthritis.” My issues with abandonment raged inside my inflamed arthritic body. I was afraid my fairy-tale life would go away and I would once again be that frightened little girl vying for her mother’s love.
To mask my guilt I gave my financial support to the Arthritis Foundation through my friend. Making donations, buying tickets to events, bidding on items in their silent auctions, taking out ads, and supporting her in fund-raising walks. If I supported the fight against my disease financially, wasn’t that doing my part? As a child my mother supported me financially. I always had nice clothes and new black patent Mary Jane shoes. My mother constantly reminded me of how good my boarded-out home care was because they kept me clean and neat. How was I to know that wasn’t the definition of a good home? But what about emotionally? Where was my mom? Why couldn’t I live with her? Was I, as an adult, now following in her emotionally vacant footsteps? I justified my actions just as my mom justified hers. I was doing the best I could.
But was I?
I had a difficult time even acknowledging that I had rheumatoid arthritis, and I tried not to discuss health, anybody’s health, to avoid it. Denial worked for me as a child, and it worked for me when my arthritis flared. The stigma of arthritis kept me in hiding, and I believe it keeps celebrities and others who can make a difference in hiding. One Academy Award–winning actor recently contacted the Arthritis Foundation to be a spokesperson. This actor was ready to come forward. Then their agent found out and talked them out of it.
This person and so many others could be the voices and faces of arthritis, helping to raise awareness and, along with it, money for research. By changing the face of arthritis, we can get more people into remission, take down the pain, and change the arthritis vocabulary. Maybe even have an alternate nickname for arthritis—the Big A. This would be my ultimate makeover. Giving arthritis a new tag, a new look, and its sufferers some renewed hope.
And that’s why I’m coming forward now. I want to share with other people whose lives have been changed by arthritis. I want them to go into the remission that has changed my life. I want them to fight, manage their health, and never give up. I want to help.
I hope this book will start that process of changing perceptions and rallying support, but we still need help—a lot of it—and so I urge anyone with arthritis to get involved, to speak out, and to urge others to do the same.
In the meantime, individuals with arthritis will have to go about the business of dealing with their disease. To all of them I would say that what I have learned from life with arthritis is that it is never too late to try to make a difference in your life. Define your disease, but don’t let the disease define you. When you’re in the middle of pain and frustration, it’s easy to give up. The path to wellness is paved with trial and error, and after many trials and many complications sometimes you feel like you can’t take even one more. You’ve had it. I understand. I’ve been there. Discouraged, too many medications unsuccessfully fighting their own battle inside my body. I wondered how I could fight the battle of arthritis and of medications, and at times I thought I couldn’t. I was out of energy. Out of hope.
And it’s okay to give up for a day, maybe even two, but then you have to get going again. Giving up is giving in to the disease, and arthritis is a disease that will take over if you give in. It’s greedy, it likes to take control, and it wants to win. But you can’t let it win.
When I was ready to give up, there were no new drugs, just different combinations of the old drugs. Only Dr. Kalunian’s promise of new drugs coming down the research pipeline offered any hope. Today there are many new FDA approved drugs: Remicade, Humira, Orencia, Rituxan, Cimzia, Simponi, and Actemra. Several other new drugs are now in test trials. A few are intravenous, others are subcutaneous—injections like Enbrel. There are options.
I have a cousin who suffers from arthritis. She says her pain is constant. She has tried many things, Enbrel being one of them, and all have failed. When I gave her this list of new drugs I found in doing my research for this book, her answer was, “I won’t do any IV. I’m tired of trying new drugs,” and so she goes to her doctor every other month for a cortisone shot, which gives her a little relief, but only a little. I equate her treatment to using a Band-Aid on something that needs stitches. Meanwhile arthritis controls her body, damaging, taking control, and winning.
None of us like needles, none of us want to depend on a monthly IV infusion or a weekly self-injected shot, but what is the alternative? I have been afraid of needles since the time I stood in line in elementary school, shakily holding the shot permission slip my foster mom signed that morning, hearing the kids in front of me cry as they were given the shots for polio. Some watched the needles go into the arms of the kids in front of them. I stared at the floor, thinking at any minute I would faint and almost wishing I could so I wouldn’t have to get the shot. When I think back about that time I am amazed at the cruelty of lining young children up for shots. No loving parent to hold onto them, no friendly family doctor who knew them, and no closed door to keep frightened eyes from watching. Only a nurse with an alcohol cotton ball and a needle, quickly moving the long line along.
So when I realized I would have to administer my Enbrel with a shot, my elementary school fears came back. I couldn’t even watch somebody get a shot. As an adult I pleaded with doctors to avoid shots. How would I ever be able to stick a needle into myself? And this is where we must weigh the options. Hope in a needle vs. no hope. And slowly, fearfully and somewhat disbelieving, I learned to give myself a shot. Now I do it without thinking. I could give others shots if I needed to. I shelved my fears because the results outweigh everything.
Just like so many things in life, finding and maintaining good health can be full of trade-offs.
Today I feel I am back to who I used to be.
23
The Future
OCTOBER 2010
After more than eleven years of collecting patient data, the Enbrel research program at UCLA closed in May 2010. Eleven years of questionnaires and charts went back to Amgen, the parent company of Enbrel, and all the patients returned to the original rheumatologists they saw before the program began. The FDA had approved Enbrel for public use in 1998, and the patients who stayed in the research program after that were the long-timers, the ones who had weathered the ups and downs—patients like me, who had good results. We were the postmarket-ing, open-label extension study that had completed the long experience safety data the company required. Now we needed to move on in order to make room in the re
search center, especially in the Barcalounger chairs, for future drug-testing patients.
My feelings about seeing the program close were mixed. On one hand I was delighted to be in such good health that I no longer needed UCLA. On the other hand, UCLA had been my second home. I spent nineteen years of my life as a patient there—eight in the 200 Medical Center building and eleven in the research department. Nineteen years of my life with arthritis. And UCLA was where I went when I was desperate and an IV infusion of steroids could put me back on track. The place where I knew everyone and they knew me on a first-name basis. The halls where, regardless of my condition, I felt healthy compared to so many patients who were much sicker than I was.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 19
