“Ohmygod, that is amazing,” my stepdaughter Kerry, always the great television publicist, said when I told her the news as she walked up the stairs still waking up. “That is huge, gigantic, amazing.” Kerry was a good publicist because she was always overly enthusiastic. “I’ll drive you, that way I can drop you off at the mall, park, and then meet up with you.” That was the best suggestion I’d had all morning. I could navigate the MapQuest instructions while she drove. I felt some of the pressure subsiding with her kind offer.
I applied a ten-minute facial on my face, now an apple green color as I attempted to blow dry my hair into some sort of order. The masque dried and did its magic, and my hair, as if ordered, fell into place. It turned out to be a good hair day after all. As I looked in the mirror I thought back to the days only a year ago when I had to pull my hair in a ponytail because my shoulders were so inflamed with arthritis I couldn’t hold the hair dryer long enough to style my hair. Twenty minutes later, masque off, I sat down at my dressing table and did my makeup. Even my liquid eyeliner went on nicely. Various family members came upstairs to talk about the news and followed me around as I gathered my clothes to dress. “Out, everyone out, I have to get dressed,” I said, escorting them through the bedroom door. Their excitement increased my excitement, meanwhile the clock ticked away.
At 9:27 I walked downstairs, looking like a national news reporter. Conservative suit, stylish oblong scarf open at the neck, flat shoes to get me to the mall, designer pumps in my tote for the taping. My fashion statement was oversized earrings, just enough, not too much. It was a fine line to walk between fashion and business. This report was a business report about fashion, and I felt like my outfit was just right. NBC national news, here I come. At nine thirty, Kerry and I were in the car, munching on bananas, heading toward the 405 Freeway to Glendale. Traffic was light. Everyone was still celebrating Thanksgiving, except those of us who were headed to the malls for the biggest shopping day of the year.
The mall parking structure was a maze of cars, all vying for parking spaces. I hopped out of the car and dashed inside to find a mall swarming with energetic shoppers. Kerry would meet up with me at the Gap, our first location. But something was different. Today I wasn’t being dropped off close to a store entrance because I couldn’t walk, this time it was only about time, not about pain. I stopped for a moment to realize how far I had come on the arthritis scale in the past year. I stopped, in all the craziness of the mall, on this day after Thanksgiving, to be thankful for how fortunate I was.
The reporter, cameraman, and soundman were there and ready. We talked off camera for a few minutes about the story and then we were ready to roll. I slipped out of my flats and into my heels. I forgot about being a chronically ill patient in remission, I forgot about my distorted hands and became a professional reporter. I walked, talked, and gave consumer information as I took the business reporter through several stores. The cameraman and soundman moved right along with us. We did a couple of pickup shots, a little voice-over, and by twelve forty-five we were done.
In the car Kerry gushed about my performance, but she was a gusher. I was always conservative. I never evaluated my performances until I saw them on air. And that day I didn’t have to wait long, because everyone was on the road heading toward malls so traffic was crazy. By the time we got home it was almost four o’clock.
At six thirty everyone gathered around the television, the VCR set to record. Like a lot of people in television, I was not a fan of watching myself on TV with other people in the room. I wanted privacy to really watch and scrutinize, to be overly critical. Guests mean well, but they usually talk over the segment and never see the details. I knew I would have to wait until later to watch it for my own personal evaluation, but, as the Nightly News music played to the opening, the moment was still exciting.
And there he was, Brian Williams, announcing my segment. My stomach did a flip-flop but this time not from overmedica-tion. My feet were tucked under me on the couch, pain free, and normal size. Eagerly I sat forward as if it would help me see better. On the TV the reporter and I walked side by side, talking about shopping. My hands were purposely hidden in my jacket pockets. I looked like a healthy, normal, fashionable person. I felt like a healthy, normal, fashionable person except for the fact that I was watching myself on the nightly news.
As I walked toward the camera, telling the reporter why stores like the Gap were now selling personal grooming items and perfumes in addition to their jeans and casual clothes, I couldn’t help but notice that I was projecting a different image. I was different. I had gained a new confidence. I didn’t know if anyone else watching would have noticed any change. I remembered a few years ago when Shelly assured me I looked fine on television when I knew arthritis was changing my appearance, yet today I could see a difference, a positive difference. Arthritis might have ravaged parts of my body, but I had fought back. I might have lost control of my health for a while, but I managed my ability to deal with adversity. I was still the same expert in style and fashion, but now I was also an expert in surviving. The physical damage I so feared was tucked away in my pockets, but I knew it was there. Physically I was not the same. Emotionally I was not the same. I was stronger. I now knew I could survive anything, even arthritis.
In the past there were many times when I thought perhaps I should stop hiding. That it was time to come forward with my secret. But something always held me back. Not just yet, don’t rock the boat. Now, if someone asked me if I did the right thing by keeping my disease to myself, on this day after Thanksgiving, having watched the national news segment where I looked healthy and walked in heels, without the aid of any steroids or pain medication, my answer would be an unequivocal “yes.”
20
Double-Dipping at UCLA
SPRING 2000
Everything in my life was going smoothly. My health, my career, my wonderful marriage, even my secret was still intact. Life was good. But being me, I needed to grow, and education had always been a way for me to grow, so more than a year ago I had decided to enroll at UCLA.
I now attended UCLA for two totally different agendas. One for my body, one for my mind. I was still in the research program for Enbrel, where I had a monthly appointment at the research medical center, where my labs were checked, my joints were tested, and I filled out the medical questionnaires that I had almost memorized after filling them out so many times over the years. The difference being I was marking the forms with answers rating my overall health at ninety percent of good health, ninety-five percent that I felt I could now control my rheumatoid arthritis with medications, and one hundred percent in the category of how pleased I was with my progress. If you compared my questionnaire at the beginning of the program three years earlier you would swear it was another patient. I had come a long way. I was fortunate to be a lab rat, tested and scrutinized as the medical staff monitored the drug for FDA approval.
The other research patients and I were always kept apart, even in the small lab room. No one ever said it, but we understood not to talk to each other. It was almost like electronic invisible dog fences were in place that would shock us if we crossed over the line. We were all confidential files, known by number more than by name. I was CLS#2, ironically there was a CLS#1. I understood that I would never know who that person was, nor would they know anything about me. If I was alone in the room with the technician I still asked how other patients were doing on the drug that was a miracle for me. And if the technician was in a talkative mood they said things like, “Dallas had to quit, the commute was difficult, and they weren’t getting enough response to the medication,” or, “A couple of problems with San Francisco, but they’re staying in the program because they know that once they leave, they’ll have to wait until the medicine is FDA approved before they can go back on it.” We all understood the strict “take it or leave it” policy. you quit, you were out. Regardless. The same rules applied in the double-blind study, when I had stayed in even thoug
h my hands were gnarling and pained. I didn’t have any other option. So I understood the severity of the decision when I heard someone had dropped out. They had to be experiencing major complications to give up. You just don’t give up hope if there is even a fraction of an ounce left. The doctor still checked my joints, or the monthly “squeeze test” as I liked to call it, even though now it no longer hurt. During the double-blind study, when my joints were inflamed, it was extremely painful. I always wondered if they had to squeeze quite so hard to be able to grade me from one to ten on the inflammation chart. I had learned that even if my joints were visibly inflamed, the “squeeze test” had to be performed, regardless. In order to keep the drugs in research available to UCLA, all lab tests and physical tests had to be inclusive. I had to completely fill out every questionnaire and chart whether I had sore joints or not.
In the lab room I would see patients arriving and leaving, never knowing what drug they were testing. It was obvious some, like me, were doing well, others clearly were declining, but we all were moving medical research forward for future immune-system patients. Basically we were all the same. We had come to a point where our options were exhausted, and it was research or give up. If you were lucky you did well on the new drugs; if you weren’t, you declined. Really, none of us had any other alternative except to live a life of pain. And so isolated and alone in our trial treatments, we moved through the halls of UCLA, charts and insulated medicine bags in hand. The progress of medicine. As we passed each other in the halls, we would always sneak a peek, like job candidates vying for a limited number of positions, and make silent health comparisons on the scale of life, trying to figure out just where we fit in.
Simultaneously, at the opposite end of the campus I was a student in the UCLA Extension Writers’ Program. With evening and weekend classes, this program allowed me to work in television while I furthered my education. The contrast between the research program and the writers’ program was staggering. As a writing student I was taking classes taught by Hollywood legends Garry Marshall (Pretty Woman, Happy Days) and Aaron Sorkin (A Few Good Men, The West Wing, The Social Network). Having already published one book on accessories, I was determined to learn more about writing and publish other books.
My teacher Hope Edelman, who wrote the New York Times bestseller, ‘Motherless Daughters,’ inspired me to write a memoir. In her class we heard stories about dysfunctional childhoods, marriages gone bad, murders, and small-town girls making it big. The students were as fascinating as their stories. I soon became a fan of memoir. Certainly I had the childhood for a story. I had the divorce for another, and I was a small-town girl who made it in television. Luckily no murders were involved.
In the extension classroom I was among healthy people immersed in learning. We were free to talk and share with each other and exchange stories, ideas, dreams, and goals. I stopped short of writing about my arthritis; even memoir writers have their secrets. It astonished me how on one campus I could be involved in two totally different areas of education. One educating the medical field and the FDA about new medications, the other educating my mind for new adventures. The lab rat and the student, living side by side at the same university and in the same body.
On this particular day I was writing about my childhood. I had accepted the explanation that because my mother worked she was unable to keep me with her when I was a small child. I believed this because I needed to believe it. Now as I wrote, the truth stared back at me with appalling clarity. Other writers in my class wrote about their single mothers who had babysitters or nannies in order to keep their children at home. Dealing with my own divorce, the thought of my son not living with me never once entered my mind.
Only on my computer screen did the truth come out. My mom was selfish. I didn’t want to believe it, but there it was, in black-and-white print, right in front of my eyes. She cared more about her life than mine. I knew the stories about my mother’s mother dying when she was only eight, leaving my mother and her twin basically on their own. My mother was one of Hope Edelman’s Motherless Mothers. She never had a role model to teach her about being a mother. I could defend her and also say that she was only nineteen when I was born. I could support that with the fact that she had had a hard life, including her marriage to my dad, and all that was valid, but bottom line, I still could have lived with her. Other divorced mothers managed. She could have afforded a nanny, maybe at the exclusion of her new powder-blue convertible and fashionably furnished apartment, but it could have been a possibility. Instead she chose for me to live in other people’s homes. The most interesting piece is that as a child I was never angry at my mother. Once I finally got to live with her, at the age of nine when she remarried, I was elated. She was, after all, my beautiful mom.
The pages flowed and with each one came a little more insight into why I was so fearful of losing to RA all I had acquired as an adult. Reading my own childhood pages I saw how insecure I was when it came to my position in life. I knew how fragile my career was and how quickly it could be taken away from me. I realized that all the male figures in my life had left, so why wouldn’t Shelly? Arthritis seemed to have the power to take everything away. Being clean and neat with my outfits matching were lessons that served me in my childhood and my career. But when disease struck, arthritis marched over everything, not caring what it destroyed. Not caring if my outfits matched or my hair was parted on the right side. After what I perceived as so many years of making my life perfect, the fear of having it implode overrode any rational thought.
And so the halls of UCLA dominated my life in two very positive ways. Both my mind and my body were being healed at this institution of learning. I was no longer the sick patient, I was the healthy one. I was no longer the confused, insecure little girl. Through many therapy-type discussions with my two insightful half sisters, I had an understanding of who I was and what I had overcome. I had a vague comprehension about why I needed to keep my secret, but now, through my writing, I was beginning to understand that it went much deeper than just fashion and television.
On the surface my parents looked like the ideal mom and dad.
21
This Grown-Up Girl’s Osteo Race
OCTOBER 2007
My second book party was at the Façnnable store on Wilshire Boulevard in Beverly Hills with Vanity Fair hosting. My book, The Grown-Up Girl’s Guide to Style was a beautiful oversized hardcover, full of pictures of over-forty women looking fabulous. Earlier that day I spent several hours in my publisher’s new Century City offices, signing books that would be given out to the guests that night. My publisher was Judith Regan, the hottest in the business. I was walking—no, running—on cloud nine. Life was not just good, it was great. My rheumatoid arthritis had been in remission for almost ten years. Pain free. My marriage was wonderful, my career at full speed.
My stepdaughter and her husband treated me to hair and makeup for the book launch party. For my outfit I chose gabardine cropped pants, with big side pockets for my hands, black heeled boots, a crisp white shirt, and black velvet jacket. So many friends and coworkers were there, eating, drinking, and congratulating me. A professional photographer covered the room, capturing the celebration with her lens. Music played, wine and champagne flowed, white-jacketed waiters passed hors d’oeuvres, joyous conversations filled the room. Judith Regan was the host of the party, but right before she was to make the opening introduction, Cassie Jones, her number-two person, came over to me.
“Judith’s stuck in New York. Sorry she can’t make it. I’ll be introducing you,” she said, trying to make light of it.
It felt like a punch in the stomach. Judith Regan was a celebrity in her own right. When you mentioned her name, people paid attention. She was the queen of publishing, and since her move to Los Angeles, rumored to be expanding her dynasty into all media. Judith and I had had a difficult and long ordeal getting this book in print. Judith liked what was known as “crash books” and one after another they kept gett
ing in the way and delaying mine. A crash book is a celebrity story that breaks in the news, and a publisher decides to get a book out immediately to cash in on the publicity. Judith’s latest crash book was OJ Simpson supposedly admitting that he killed his wife, Nicole. It took almost two years for my book to be printed, and then it was printed only because my contract said two years was the limit to either print or return the book to the author. Judith didn’t want to lose the book, and so we finally went to press. The roller-coaster ride to publish this book had been difficult, but now I had a book, I had a party, but Judith was a no-show. I kept the smile on my face. I wouldn’t let this ruin such an important night. And it didn’t. After the initial disappointment I was caught up in the best part of publishing, the celebration of a new book with friends and family.
The publicity tour was intense, just the way an author wants it to be. The Today Show, LIVE! With Regis & Kelly, CBS Early Show, Entertainment Tonight, Inside Edition, the Rachael Ray Show, and other smaller television and radio shows. O, The Oprah Magazine promoted the book by doing a spread on my theories for women over forty dealing with their neck issues. The Associated Press, the Washington Post Book World, and The Huffington Post all did stories.
The only reminder I had of my disease was a slight ringing in my ears due to certain earlier medications—it was like having my own internal sound machine—and thinner hair that now required bodybuilding shampoos and lots of thickening spray.
In the midst of all the publicity I had my checkup appointment at UCLA. Dr. Bulpitt had moved on to another medical facility. Dr. Harold Paulus, an elderly icon in the rheumatology department at UCLA, was brought out of retirement to take over the remainder of the Enbrel research program. Because of my many years of steroid use, my bone density had moved into the osteopenia zone, and a year before I’d gone on Fosamex, a weekly pill developed to halt the softening and deterioration of my bones. Despite this medication, I had now moved over to the osteoporosis zone. I was haunted remembering how my mother fell and broke her hip the previous year, was never able to do the rehab after surgery, and never recovered. Dr. Paulus sensed my concerns and put me on Forteo, a daily injection from a penlike instrument containing a tiny needle that dispensed medicine developed to build bone. He also recommended I see a rheumatologist specializing in osteoporosis, Dr. Alan Metzgar, a Beverly Hills physician who treated many celebrities. For the next two years I injected Forteo and watched my bone density numbers improve. My body was actually building bone. The doctor added megadoses of vitamin D, Pilates and Yoga classes, and maximum-strength calcium supplements. I was in a race against brittle bones, and I was determined to win. Proactive had become my mantra.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 18
