Shelly walked in the door, pulling his tie off as he entered. He immediately saw the champagne bucket. “We’re celebrating?” he asked.
“Yes, the news from the research program,” I said, handing him the champagne to open and giving him a kiss.
“It must be good, you’re smiling,” he said, popping the cork and filling our glasses. The music of Vivaldi’s Four Seasons played in the background as I explained the test results. Shelly looked confused about how I could be so happy when I not only hadn’t been on any medicine, but now would have to start over to find out if the medicine would even work for me.
“I know it sounds crazy, but just the fact that I stayed in the program means I will get this medicine years before the public. It’s a chance, it’s hope, Shelly, and I am so in need of hope.” He got that. We toasted the nine-month birth of hope. Shelly changed his clothes for the evening while I sat sipping my champagne, looking at my reflection in the mirrored walls of our living room. I looked young again, not the tired and drained woman of the past months. It wasn’t an extra layer of cover-up, an added line of blue pencil inside my eyes to make them sparkle or a salon facial looking back at me. It was the amazing antiaging effects of hope.
17
The Robo Arm Makeover
OCTOBER 1997
My antiaging process was short-lived. A month later in New York it was reality-check time
“You look like you’ve been working hard,” my producer at Live told me as we sat in the early morning hours on the stools that Regis and Kathie Lee would later occupy. It was code for: “You look like hell.” I had noticed people looking at me with more intensity, but this was the first in-my-face confrontation and it shook me to my already fragile core. Was my replacement waiting in the shadows? I had to stop myself from glancing back toward the studio wings. We were rehearsing a fall fashion segment with models and props. The runway music blared as the director communicated with me through the studio loudspeaker, going over my talking points and the order of the models.
“It’s been crazy in the dressing room this morning, and I only had time to do half my face, and, you know, the lights in this studio are notorious for making everyone look tired,” I explained, trying to balance my first cup of coffee with my note cards in my lap, all the time keeping the palms of my hands turned up to hide their distortion.
“You’re right,” my producer kindly agreed, “everyone is constantly complaining, some celebrities won’t come on the show unless they can bring their own lighting man to add a ‘fill’ light.” A fill light is placed on the floor and shines up into their faces, filling in all the crevices that are created by either bad overhead lighting, or in some cases, simply age. But a glimpse at myself in the many television monitors placed all over the studio told me I needed more than a fill light. I was not looking good. What I didn’t tell her was that morning I was unable to lift my arms up high enough to wash my hair, being forced once again to use dry shampoo. My puffy eyes were now framed by dull and lifeless hair. I made a mental note to ask the show’s makeup artist to spend extra time hiding my puffy eyes.
It had been almost a month since Dr. Bulpitt’s call. Between paperwork and the politics at UCLA it was one delay after another to start the Enbrel. Nobody had a straight answer. “Shouldn’t be much longer” and “just be patient” were the only communications that came my way. Part of me wanted to lash out with anger. But as in my childhood, my rages remained silent. I was afraid that if I spoke up I might be labeled a nuisance and someone would withhold my Enbrel kit and with it, my chance at returning to a normal life. Survival. I had to maintain a survival mode. I had to keep my frustrations hidden.
With Mama Dorothy I’d learned to accept what I had and keep my anger inside. If I expressed discontent, I risked upsetting Mama Dorothy and then I might have to move to another home. Life at Mama Dorothy’s wasn’t good, but the fear of moving to another unknown home was worse. And so for me rage was a silent, internal emotion. Mama Dorothy wasn’t even aware that I was angry or that I would have any cause to be. And, she didn’t care anyway. Her priorities were enforcing strict rules to keep some type of order in the house, and making sure the monthly checks came in on time. My only concern was surviving until the next visit with my mom.
Now I had to rely on the skills I honed at Mama Dorothy’s. I would be a good girl, waiting patiently—at least on the outside. On the inside my fears raged. Damage continued to my unmedicated body. My hands were slanting more, my feet were aching, and I couldn’t use my knees to sit or stand without feeling the most excruciating agony radiate from them into my entire body. Before RA, I never realized knee joints were indispensable in just moving around every day. I tried to figure out every way possible to not involve knee movement. Could I pee standing up in the shower? Revolting. So I drank fewer liquids because then I wouldn’t have to lower myself to the toilet seat as often, now seemingly miles away from a standing position. As I inched myself toward the toilet seat my knee bones seemed to catch in their hinges. Each small bend felt like it forced the hinge open a little more. My fear was that my knees would explode, tearing away from their sockets, and I would end up in a wheelchair, just like my mom predicted. A raised seat was totally out of the question unless absolutely mandatory. Altered bathrooms were for the aged, not for me. Keeping my body stiff, I could lower myself onto the couch by just falling backward, no knees even needed. Chairs were eliminated whenever possible. Even I couldn’t figure out how to fall into a chair without toppling over, and believe me, I tried. Of course, all of these solutions only worked when I was alone, safe from prying eyes. Nobody to stare at my damaged hands, or to see me fall into a couch. It was safer for me to be alone during the day. At night I begged out of some industry events when I could. Other times I had to suck it up and go, gloved, in my ballet flats, hiding my pain with a Sparkle Plenty face and a pain pill. Surely God was testing me. But why was it taking so long?
Control. Today I was desperate for some type of control. As a child I took control by escaping into a pretend world I found in the many books I read. I watched my mom take control by buying me a new dress or getting my hair cut. Even the simplest thing like polishing my fingernails in ballerina pink made my mom feel like she was in control of me. For the past seven years, living with RA and working in the television field where control was in the hands of the producers and executives, the only thing I could control was my appearance through makeup and style. Now, looking at my damaged hands, even that seemed to have escaped me.
Dr. Kalunian had mentioned a leading hand surgeon at Cedars who might be able to help me, and today I needed help, even if it came in the form of surgery. I called and took the first available appointment for a consultation. If there was a rewards program for frequent doctor visits, I would be collecting points to exchange for some exotic trip. Unfortunately, all I was collecting was expensive Beverly Hills and Westwood parking receipts.
After two young doctors in training pulled, squeezed, and diagrammed my hands, the surgeon came in. I knew he was important from the way the young doctors scurried to the corners of the room, charts in hand.
With a gentle touch, he examined my hands, giving notes to the cowering young doctors. “First, second, and third left digitals slant to the left. First, second, and third right digitals slant to the right. Thumbs normal. Right pinkie bent at first joint. Hand joints raised,” he said and then, glancing up from my hands, he looked at me. Was it my imagination or did he agree that my hands didn’t match the rest of me?
“You definitely have some damage to your hands and fingers. My first recommendation would be hand molds. We might be able to straighten your slant if you’re diligent about wearing the molds. The second alternative is surgery. To straighten your fingers I would first tighten the tendons. For the joints I would make an incision across your knuckles and take down some of the bulging.”
I tried to take it all in, my mind racing with thoughts of tied tendons and scars along my hands. “Wo
uld they be scarred?”
“The scars would barely be noticeable. I can straighten out the slant and improve the bulbous look of your knuckles. I do one hand at a time. The physical therapy is time consuming, but I know I can make a difference,” the doctor said, still holding and studying my hands.
“But would they look normal?” I asked. I couldn’t even remember what normal for my hands looked like.
“They would look better. Before you opt for the surgery, let’s make molds of your wrist and hands and see what we can do. It’s not invasive, you’ll sleep in the molds, and we’ll know soon if they are going to work.”
Overwhelmed with all the information, I nodded. Molds sounded creative and easy. I loved making colorful Jell-O mold salads for the holidays. Who ever thought my latest mold would be of my hands? The young doctors promptly led me to a room where they put my hands, wrists, and arms up to the elbows in a gooey white substance. When they pulled my hands out there was my imprint, slanting to the side. I felt like I was one of the molds at Color Me Mine, soon to be sculptured into a lovely do-it-yourself hand-painted vase.
A few days later I went back to pick up my molds. One of the young doctors greeted me carrying what looked like gigantic arm guards for a hockey goalie, the ones that go all the way down to their giant gloves. They were huge, gray arm sleeves with six heavy black Velcro straps that closed over my hands, leaving the fingertips slightly visible, and covering all of my arms up to the elbow. He strapped me in, and there I stood—robo arms. Not only were they big and heavy, they were bulky, unattractive, and uncomfortable. I looked ready to tackle the first person who came along. So much for the fingerless black lace evening gloves.
“Put them on when you’re in bed,” he informed me, smiling, pleased at how well they fit.
Sleep, how would I ever be able to get comfortable? Turn over? Hug my husband?
“Wear them every night, and check back with us in a month,” he said, removing my robo arms and placing them in a large, white, plastic bag with handles. If they were in a Saks bag everyone would have thought I just bought a new pair of exquisite knee-high boots.
That night, I set my book down and reached under the draped table beside my bed for my hidden plastic bag, pulling my new arm molds up on top of the comforter. Shelly, reading his book, looked over.
“You got your molds,” he said, trying not to sound shocked at their hefty size as he watched me fumbling to try to put them on. “Here, I’ll help you,” he said, pulling the Velcro straps tight on my arms.
I looked down from my sitting position, my arms now covered from fingertips to elbows in my new gear. Two stiff, enormous black Velcro arms in bed with Shelly and me. This would take the romance out of any relationship.
“Yes,” I said as I tried to scoot down into a prone position, my arms jutting stiff and straight out on top of the blanket. I tried crossing them, too heavy. I tried turning on my side, but it felt like I had a Velcro-covered plank under my body. I tried bending my arms at the elbow and resting my arms on my chest, not comfortable for anyone with breasts. The only way this would work was if I slept on my back, arms at attention at my sides. There would be no snuggling, no turning over, no restful sleep.
“They’re not so bad,” Shelly said, trying to make light of my discomfort. “It’s better than surgery, Christine. Don’t get discouraged.”
I closed my eyes, turned my head to one side, and tried to sleep. It was going to be a challenge. And not just sleeping. During the middle of the night I had to take off one of the molds to go to the bathroom and use toilet paper. Oh, the advantages of being a man.
Over the next two weeks I figured out how to sleep uncomfortably, I scheduled sex before putting my robo arms on, and figured out how to maneuver with the bathroom in the middle of the night. My eyes were now even puffier from restless nights, but I was sure my hands were better. Or perhaps they seemed better to me only because my RA pain was worse. How long could I hold out until my Enbrel kit came in? The only medication I was allowed to take was the anti-inflammatory Celebrex, and it just wasn’t strong enough. My feet, ankles, knees, wrists, and elbows were grinding away. Bone to bone, what seemed like a gravel pit in my body manufacturing sharp, piercing stones that were wedging their way into my joints, carving out more and more space to pulverize my bones. The only good news was the thought that the stones couldn’t break through my skin as long as my robo arms were in place.
“I’m going to schedule the surgery,” I told Dr. Kalunian on my next office visit, over a month into my robo arm therapy. “The surgeon was disappointed in the lack of results from the molds. Seems I have stubborn hands.” With Dr. Kalunian I was able to let my guard down, shed a tear, take out my frustrations. He never judged me, and always gave his support.
“Think about the surgery, Christine. I have patients who have gone through it and the results, while better, are not perfect. Knowing you, you’re looking for perfection. You could be disappointed.”
I had heard those words, in a different configuration, from the surgeon as well. Surgery was not going to make my hands normal, just improved.
“Why now, Christine? Why not wait until you see how you do on the Enbrel? Why complicate your life any more than necessary?” Dr. Kalunian asked.
“Because if I can’t feel better I need to at least look better. I need to do something to gain some control in my life. What if Enbrel doesn’t work? I don’t have any other good options. It didn’t work on everyone in the research program, I could be one of those patients.” I didn’t know if it was the desperation in my voice, my damaged hands waving frantically in the air to make my point or the sadness in my eyes that made him nod and say, “Okay, I get it. I need to do some lab work and testing and talk with your surgeon.”
I understood that covering up didn’t change things. Even in my cocoon of denial I knew that regardless of my own cover-up, I was who I was: that vulnerable little girl who fought for space in the lives of people who mattered. Still, I wanted the surgery.
Covering up wasn’t anything new to me. My mom started the cover-up when I was a child. Every time I moved from one boarded house to another my suitcases would be packed and waiting at the door for my mother to come pick me up. My “boarded-out” caregiver and my mom knew I was leaving and moving on, but they never told me. The larger suitcase should have been a clue, because for my sleepovers with my mom I only took a small overnight suitcase. But because it started when I was so young, I never made the connection; large suitcases equals moving day. I grew up in the generation of not talking about anything. Everything was swept under the carpet.
“You don’t want to know, Chrissie.” “We don’t talk about those things, Chrissie.” “Why would you even ask about that, Chrissie?” These were the standard answers to my probing questions. Where was my dad? Why couldn’t I live with my mom? Why did I have to move to another home?”
To this day when I pack for a trip, whether a business trip or an exciting vacation, as I drive away to the airport and I look at my home there is an ever so slight feeling of anxiety in the pit of my stomach. Will I see my house again? What if? I have accepted the fact that I will never be good at leaving.
Over the next week I had every test imaginable to prepare me for the hand surgery. An echo/ECG for my heart, breathing tests for my lungs, and coagulating time for my blood. Dr. Kalunian was not taking any chances. Except for a compromised immune system, inflamed feet, knees, elbows, and knuckles, I was as healthy as a farm horse. My hand surgery could be scheduled for the following week. After that, surely the Enbrel would be ready.
Shelly didn’t help.
“I don’t know why you want to go through with this. You look perfect to me.”
I knew he meant it. To him, the man who didn’t acknowledge my weight gain from steroids, pretended that my hands were normal, and complimented me on my various styles of sneakers, I was just fine the way I was.
He understood my need for control when I answered, “Because
I have to do something.”
Now I understood why my mom would get her comb out and touch up my hair as soon as we got in the car for one of our weekends.
“They never part your hair right, Chrissie no matter how much I tell them,” she would say. Turning sideways in the driver’s seat and twisting me to face her, she put the part in the way she liked it. To me I didn’t look any different when she was done but to my mom I looked like her daughter, not Mama Dorothy’s or Margie’s paid houseguest. Was I more lovable? My mom always seemed to be happier with me when I looked better.
Now I was in a career where my appearance was my calling card, so presumably the better I looked the more successful, or lovable, I’d be. The intelligent side of me knew that surgery was a feeble attempt at control. The emotional side of me accepted my need for control, however shallow it seemed. I booked the surgery.
The call from UCLA came one morning as I sat in bed watching reruns of Sex And the City, trying to eat Doritos (steroid hunger snacks), still in my PJ’s, my robo arms back on after Shelly had left for work. If wearing them at night wasn’t helping, maybe some additional time during the day would. The only good thing about the morning so far was the realization that it took me longer to get a chip out of the bag and into my mouth. The robo arms diet.
“Am I speaking to Christine Schwab?” the UCLA attendant asked.
Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me Page 16
