Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me

by Christine Schwab

  “Do you have RA?” a husky voice startled me out of my daze. Before me stood a tall, attractive, imposing woman, scrolling her eyes down to my trendy, animal-print sneakers.

  All I could respond, as I slowly got my joints moving to stand up, now face-to-face with her, was, “What?”

  “Do you have rheumatoid arthritis?” she repeated in a louder, deeper voice.

  Startled, I looked around to see if anyone had heard. The room was filled with industry people, people who couldn’t know my secret.

  “I’ve been watching you, how slowly you move to get up and then I saw your sneakers and I had to ask because you look like you have RA,” she rattled on, inspecting me for damage as if I were a rental car with potential dents being returned to Hertz. All that was missing was a checklist: steroid moon-shaped face—check, damage to hands—not visible, feet—hidden. Now face-to-face I recognized it was the actress Kathleen Turner. Why was she in my face about RA? I glanced around the room again, expecting to see secret agents talking to each other on their hidden microphones, “Yep, got another one, RA for sure.”

  “The reason I’m asking,” she continued in that sexy voice that is so recognizable, now standing so close to me that I feared our noses would touch if she moved in any more, “is because I have RA. What medications are you taking? You look pretty stiff.”

  Kathleen Turner has RA? The sexy star of the movie Body Heat. This gorgeous woman right in front of me. “I’m over doctors, I finally got some relief by going to Mexico. Now I grind up animal bones and drink their tea and I’m better. Have you tried that?” she continued in rapid speed. “I think it’s working.”

  Ground-up animal bones? Mexico? Confronted in public? If Kathleen Turner recognized my RA, do others as well? My head was whirling.

  “I’m in the process of trying new combinations of old drugs. My doctor said we just have to keep me going until the new drugs that are being tested are available. They’re testing at UCLA right now, so it’s only a matter of time.”

  “Ugh, doctors, conventional medicines, I’ve had it. Really you should try something else, it doesn’t look like what you’re doing is helping. Cool sneakers, your feet a problem?”

  Shelly, newspapers and carry-on in hand, interrupted our conversation. “Christine, we have to board,” he said as he took my arm. He could tell that whatever she was saying to me was traumatic. “That was Kathleen Turner,” I said as we moved toward the boarding gate. “She has RA.”

  “She told you?” Shelly asked.

  “She recognized that I have RA from my sneakers and the way I walked.”

  He didn’t say any more. He saw the fear on my face.

  I leaned my head back in my plane seat and fell into a fitful sleep. Chicken bones, dog bones, cat bones. Kathleen Turner on the kitchen table having wild sex with William Hurt in the movie Body Heat, steam coming from a brewing pot on the stove. As I started to sip the smelly brew I woke up. If Kathleen Turner could recognize my disease, how many others knew? Was my secret about to become public?

  But I quickly forgot about those concerns when I got a call from the UCLA research lab as we were being driven into New York City. Could I come in next week to start the trial testing on Enbrel? I didn’t know what happened. I didn’t want to tell them that I had been rejected, so I called Dr. Kalunian.

  “Congratulations, Christine, that’s great news,” he said in his busy, behind-schedule voice.

  “Do you know what happened, why I’m now accepted?” I asked, almost afraid of the answer, hoping it wasn’t a mistake.

  “Just go and enroll. This is your chance, don’t ask any questions, just do it. Gotta run, good news, Christine,” and he was gone. As I hung up the phone part of my mind asked what happened. The other part repeated his words, “Just do it.” And I did.

  The research room in the rheumatology building at UCLA is the last stop for patients who have tried everything else to no avail. It’s a somber place. There’s not a lot of smiling. These patients are tired, worn down, and sick.

  I walked in and sat down on the only empty Barcalounger-type chair. One young woman looked like she was asleep as an IV pumped trial medications into her arm. Even in her sleep, her mouth was down-turned, defeated. Another older woman was complaining to the technician nonstop, nothing was right, she hurt everywhere, nothing was working. She glanced at me with a look that said, “Just wait.”

  I filled out paper after paper until my swollen, inflamed fingers cramped from holding the pen. I signed away my life. I would hold them responsible for nothing, I was now on my own, floating, without a life vest, in the UCLA research lake, grasping at a floating tree branch that was just beyond my reach as I realized I was treading water way over my head.

  “You have to stop all your medications for RA as of today. We need to cleanse your system before we start the test,” the technician told me in a distant “don’t get attached” voice. All of my medications? I would be taking nothing to relieve my pain? The thought petrified me. For the past seven years I had been living on medications, but I signed the form. “Just do it,” Dr. Kalunian’s words, echoed in my head.

  “We’ll call you when your trial kit comes in. Remember, no drugs,” the technician said, moving on to take the IV out of the sleeping patient’s arm.

  I looked back at the room as I walked out. There was nothing warm or comforting in there. It was a sterile, serious environment. Even the air seemed still. The only thing missing were the rat cages. They were in the next room, already moving on to test a new drug. For a minute fear overtook my feeling of hope. What was ahead?

  16

  And the Results Are . . .

  SEPTEMBER 1997

  I glanced over at my day planner sitting next to me on the couch in my den, waiting for me to fill in all the blank squares. The calendar was open to September. I’d drawn a large red circle around September 25th, with “UCLA” inside. Nine months. I had been in the UCLA Enbrel research testing program for nine months. I had completed my last set of labs for the double- blind study a few weeks ago. Now on my couch, watching daytime television, wrapped in my afghan, I was waiting for the phone call that would tell me if I had been on the placebo, half strength, or full strength. My guess was that I was on half strength. The biggest news would be when would I get my new Enbrel kit with the full dosage of medicine. I had stayed the course when others had dropped out. I would soon be rewarded.

  While reruns of Friends played on TV, the scenario of the last nine months played over and over in my head. I flipped the pages of my day planner, my UCLA appointments entered in red pen and my work schedule in blue. With each month, there were more red boxes and fewer blue boxes. The travel boxes, in green, had almost stopped. I had become a prisoner of my disease. I was held hostage in a research program.

  I entered the program in January 1997. It was a double-blind study, meaning no one except the drug company representatives knew whether patients were on a placebo, half-strength, or full-strength doses of the new medication.

  I always had the same UCLA lab technician, Tina, a petite, struggling young mom with long, curly hair like Amy Irving’s. She was professional, never giving hope but never giving up on hope. She answered what questions she could, avoiding any that might give away too much information. Because of the double-blind study, neither she, nor my doctor, knew what dosage—if any—I was on so she couldn’t have shared anything if she wanted to.

  I had waited so long for this new line of drugs to become available, so I had to be positive—“Sparkle Plenty”—that I would be one of the lucky ones getting a full dosage of Enbrel in my twice-weekly shots. Even in that sad lab room at UCLA, I kept my hope alive.

  I was rewarded with six months of feeling good. Not just good, great. As if the disease had been lifted out of my body. I had energy, not steroid-induced energy, but my old, healthy energy. My joints felt almost normal, I could move around without grimacing. I could get out of bed in the morning without feeling like a stiff card
board cutout of myself. Enbrel was the magic drug, my ticket out of chronic illness and back to my former life. I was ecstatic.

  Then Tina brought me back to reality. “Your sed rate (the rate that indicates inflammation in the body) is starting to rise.” My labs had been good for six months, so this negative news was jarring. I equated sed rate with pain. Before the research program, the higher the sed rate, the more intense the pain.

  “Is this happening to any of the other study participants? How are they doing?” I was always asking about the others, how was their health, who had left the program, who was still in. Tina, protecting privacy, identified the patients by location.

  “The woman from Dallas left the program, sure that she was on the placebo. Between the travel back and forth to UCLA and the lack of results she finally gave up. The man from Orange County quit last week, sure that he felt he was on a half dosage. He couldn’t take the pain anymore. About a third of the participants have left, some frightened by the revelations of a few patients dying or being diagnosed with some type of cancer. They read the updates and consent forms as the study progressed and even though we told them these issues most likely were not caused by the drug, their fear takes over. They won’t sign the forms, so they have to leave the program,” Tina said.

  “I must be on the half strength. I thought it was the full strength before, but now with my sed rate going up and pain returning to my joints I’m sure I have the half dosage,” I said, looking at Tina for clarification. She didn’t answer. She couldn’t. So why did I keep prodding? Because the fear of having the disease return petrified me, taking me back to that dark, powerless place where my life spun out of control.

  And then my health went into a tailspin. Almost overnight I watched my hands age. Knobby knuckles popped out like tiny balls hidden under the skin of each joint, stretching the skin like a double bedsheet pulled over a queen-size mattress. Then my fingers started slanting outward, as if reaching for something to the side of my pinkies. I looked like the cover photo of the arthritis pamphlets in the doctor’s office. My worst nightmare.

  My feet blew up red and swollen and I couldn’t squeeze into anything but sneakers, flip-flops, or slippers. I was in my early forties and dressing more like a mall walker on leave from her assisted-living home than a fashion reporter. Once again my wardrobe of heeled shoes was gathering dust.

  “Please, just a few steroids to get me through this Entertainment Tonight piece, just for the day before and of the shoot, that’s all I need, so I can walk, talk, and stand like a seminormal person,” I pleaded with Dr. Kalunian, showing up at his office one morning, unannounced, in desperate need of help. I was beginning to sound like an addict.

  “Christine, you’re now under Dr. Bulpitt’s care in the research program. I can’t give you anything. I’m sorry, I understand your predicament, but these are the rules of pharmaceutical trials, I can’t break them,” he said with his hand on the knob of the exam room door, eager to get away from my neediness and on to his scheduled patients.

  The next morning, after some frustrated tears in the shower, I took Tylenol and did the segment. I had to. What would I be, who would I be if I wasn’t on TV? My identity was tied up in my fantasy job. The fantasy that consumed my life as a child continued on in adulthood, filling in the gaps of my insecurities. In television I was validated. I was no longer that little girl who always seemed to be seeking a place where she wasn’t in the way. A place where she was appreciated. I had finally found my place. I finally saw myself as a whole person on the inside and the outside. Shelly had always recognized that in me, but it took me much longer to get to the same place. Now that person was crumbling. I thought I could deal by using my cocoon of denial, but the visible evidence now eradicated that. Once again, I was powerless. I no longer knew who I was.

  Watching the ET segment air the next night, I wondered if I was the only person who could see the strain and pain on my face. I tried to give myself a pep talk, “You look fine, nobody is noticing the strain around your eyes.” “Don’t be so critical, everyone’s watching the story, not you.” “You know how you’re feeling, everyone else is looking at your awesome Jil Sander jacket.” But my pep talks to myself didn’t work.

  “You look fine, just more like a serious journalist,” my husband said, addressing my concerns. “Like you could be on 60 Minutes instead of Entertainment Tonight. You’re too self-conscious. Only you would recognize the pain on your face.”

  Shelly always made me feel better, even though I knew he was lying. I looked tired and worn out. I looked old.

  Finally it was September, the month of truth when the research envelopes would be opened and the results revealed. I still thought I was on the half dosage because of the relief I’d felt during the first six months of the study. That meant that once I got the full dosage, a reward for staying in the program, I would have my pre-RA life back. I couldn’t wait.

  It was difficult those last two months of the program, knowing that my RA was active and whatever dosage of medicine I was on was not working. I eliminated what travel and jobs I could and, with the aid of many assistants, plus a lot of downtime on the couch, which took my income from the green column to the red, I had survived.

  The call came from Dr. Bulpitt in the afternoon of September 27nd. I was still in my pajamas and robe, my new uniform of choice.

  “Dr. Bulpitt here. The double-blind study is over and you were on the placebo,” he said, as if he were telling me that the weather today would be seventy-two and sunny.

  “Placebo?” Did that really mean I had not had any medicine in my body for the last nine months? I couldn’t even grasp the doctor’s words. And then I looked down in my lap at my swollen, slanted hands, grasping each other as if holding on for dear life. The pain had come back the last few months. The aches, the swelling, the fatigue, but I never let my mind go to the place of “placebo.” And now I was hearing the word for the first time and I just couldn’t get it to register. I looked into the mouthpiece of the phone as if the real truth was buried there and at any minute he would say something funny like “gotcha,” but who was I kidding? I think Dr. Bulpitt has lost his sense of humor in one of his research projects. “What about how great I felt the first five months?” I asked, still trying to make sense of his words.

  “Most likely, after seven years of so many toxic drugs, your body was responding to the elimination of drugs, making you feel healthy until all the drugs were out of your system. Then the inflammation returned.” Not a positive note in his voice, not a concerned word, just the facts, the cold, shocking facts.

  “So because I didn’t have any drugs in my body I felt normal for awhile?” I asked again, still not comprehending how this could be possible.

  “It’s not unusual for a person who has taken large quantities of medications to feel somewhat better when all medications are withheld,” Dr. Bulpitt said. He always sounded like he was reading a textbook to a group of med students, instead of trying to console a stressed patient.

  “The good news is because you stayed in the program, you’re eligible for the new Enbrel kit that will contain the full dosage of the medication. The final part of the testing will be with the remaining participants all on full-strength medication. We’ll monitor you closely to make sure you can tolerate the drug.”

  Did he sound reserved? Was he giving me a heads-up that the drug might make me sick, maybe put me in the hospital like Methotrexate? Or was it my imagination? Part of me felt ecstatic that I could now have the real deal going into my body instead of purified water. The other part of me felt the same fear I felt when signing the papers for the initial testing. How would my body react? Would this be the miracle drug that would put me in remission or another toxic drug that would take me back to Cedars? All this time I was so sure I had the half dosage and that the full dosage would be incredible, only to find out that I was back at square one again. Nine months wasted. Nine months of devastation to my hands, now visibly disfigured. At le
ast when I was on the steroids they kept the inflammation down. Inflammation, when out of control, means damage to the joints, some visible, some not. My fear of visible evidence of my disease was now a reality.

  “Can I come in today?” I asked, my mind filled with conflicting thoughts.

  “We’ll have to call you when the kits come in, probably a week or two,” Dr. Bulpitt said, eager to get off the phone. His five minutes of patience with me was nearing the end.

  “But the people who were on the full dosage, they’re doing great, right?” I said.

  “Most of them are doing well. The drug looks positive.”

  And that was all I had to hear. Positive. I knew I would be one of the positive ones. I had waited almost eight years for relief. I would wait a little longer.

  The only thing I wanted to do was climb in bed and try to process this information. I put a bottle of celebratory champagne in the refrigerator to chill, knowing that when Shelly got home, he would be eager for my news. I wouldn’t let on about my fears of starting over. I didn’t want to tell him about the placebo on the phone and, in the hectic rush of his day, he hadn’t called. Buried safely under the comforter of my bed I had the afternoon to think. I came to the conclusion that even though I had damage to my hands as a result of being on the placebo, I had stayed the course, and now I would get the full strength of the drug. I gathered all my Sparkle Plenty abilities to turn this into a positive. I convinced myself that once on the real Enbrel, I would go into remission. Positive thoughts filled my head as I slipped off into a peaceful nap.

  After a quick shower to wake up, I dressed in my best black cocktail dress, the Donna Karan with the very sheer skirt and the long jacket that made me feel sexy because of the illusion of being somewhat naked. On my feet, I wore my real ballet flats—ballet flats were out of style, but since they were the only shoes I could wear to a cocktail party, I went to the dance store and bought the real deal. My black lace fingerless gloves sat waiting on top of my beaded evening bag, ready to take us to the Universal charity dinner honoring Steven Spielberg at the Century Plaza Hotel. Fingerless gloves were another new addition to my wardrobe, combining style with function. They covered the knobby part of my knuckles and helped hide the outward slant of my fingers. After seeing several pictures of myself holding a cocktail glass, hands slanted and distorted, I stopped drinking in public until I came across the glove solution.