My Body Was Turning to Stone

My Body Was Turning to Stone

From A 3rd Serving of Chicken Soup for the Soul

My Body Was Turning to Stone

In the depth of winter I finally learned there was in me invincible summer.

Albert Camus

By 1984, at age 30, I had been happily married for seven years, was enjoying a challenging career as a management consultant in San Francisco and until two years before, had always been active and healthy. So when my doctors told me that I had as little as three years to live, I was stunned. Like millions of people, I’d never even heard of scleroderma—the incurable disease that was hardening my tissues, from my skin to my internal organs.

My body was turning to stone. I went to the library to find out all that I could about the illness, and what I learned astonished me. Scleroderma (literally, hard skin) causes overproduction of collagen, the fibrous protein in the body’s connective tissues. Though scleroderma is more common than multiple sclerosis, muscular dystrophy and cystic fibrosis, little research had been done on it and almost nothing was known about how or why it develops. “You’re telling me I am going to die in a couple years and nobody knows anything about the disease?” I remember saying to my doctors. Though I was shocked, I didn’t want to waste time on self-pity.

My choice was simple: I could quit or I could live my life the way I chose to. Faced with what would many times be an anguished battle against a debilitating, disfiguring and often deadly disease, I was also given a remarkable opportunity to make a meaningful contribution. Scleroderma is a solvable problem that had never before received attention or resources. What I would do was launch an exciting, innovative search for a cure.

I’ve always considered myself small but determined: I’m 5 feet tall and have never weighed more than 100 pounds. While growing up in Omaha, I spent much of my adolescence traveling as a competitive figure skater. But at 17, I realized I wanted a more well-rounded life, so I retired from competitive skating and enrolled at Pitzer College, in Claremont, California. My first day there I met Mark Scher. I thought of him as my very best friend all through college, but it was my father who said five years later, “You’re in love with Mark—and he is in love with you.” He was right. Mark and I married in 1977. Not long after, I got my master’s degree in business administration from Stanford University and joined McKinsey & Co., one of the premier management consulting firms in the world.

Then in early 1982 I suddenly ran out of energy. Some days I literally couldn’t get out of bed. My joints were swollen and painful; my hands turned blue in the cold. My fingers could barley grasp a pen. During the next two years I was evaluated by internists, dermatologists, rheumatologists and infectious disease and pulmonary specialists. No one could figure out what was wrong. Eventually the skin on my face tightened until it became so taut I could barely close my lips over my teeth. But it wasn’t until 1984, when I was hospitalized with intense pain and breathing difficulty, that I was diagnosed with severe scleroderma. By that time, I’d deteriorated so much that the disease was unmistakable.

Within a year I was too disabled to work, but Mark and I were determined to start a family. From what I read, if I lived through the pregnancy I’d have the same chance as any other woman of having a healthy infant. But my physicians told me I shouldn’t risk it, even though they couldn’t say why. When I became pregnant, problems arose from the start. I began having contractions in the fourth month and had to take medication to prevent preterm labor. I was in and out of the hospital throughout the pregnancy. When Max was born on March 9, 1985, six weeks early and just around 5 pounds 9 ounces, my obstetrician said, “This is a miracle.” For me the pregnancy was a real turning point. I decided that I no longer wanted to hear that nothing could be done about this disease. I knew my illness and my body better than anyone.

It took me a long time to recover, but I was so in love with Max that nothing else mattered. And I had a new goal as well as a new baby: In 1986, mobilizing my business and management skills, I organized the Scleroderma Research Foundation to bring together the best minds in science, medicine and business to battle this devastating disease. The idea behind the foundation is to develop a fast track, collaborative approach to finding a cure and raising the money to fund the research. Once the foundation was on its feet, when Max was three-and-a-half years old, Mark and I began thinking of another child. This time my obstetrician reassured us: Whatever you decide, don’t base it on your last pregnancy. We’ve learned a great deal about how to take care of you. With my second pregnancy we were able to prevent most complications; Samantha was born, full term, on November 7, 1988.

Dealing with the foundation, two small babies and scleroderma day in and day out was more than a full-time commitment. I’ve struggled to pace myself. My lungs have lost much of their elasticity, and I have only 38 percent of my normal lung capacity, which affects my stamina. Everything that requires finger
flexibility—turning a doorknob, buttoning a blouse—is a nightmare. It’s taken me years to figure out how to cope, and the obstacles never end. I can drive, for instance, but only in cars with certain types of handles and locks. Just getting dressed in a business suit and putting my hair in a bun are real challenges.

Since scleroderma has disfigured my face, I’ve had to get used to people staring at me. I’ve learned to separate myself from my body. The real me, the person inside, doesn’t look like the face in the mirror. My life is not determined by the way my body functions or looks. In 1990, Mark and I decided to try for a third miracle. I was pregnant again when we moved to Santa Barbara, California, for Mark’s business. Relocating my family and the foundation, and renovating a home, I was experiencing one of the most stressful times in my life. I think that is why Montana was born a month early, on October 28, 1990. Yet at 6 pounds, 4 ounces, she was the biggest of my babies.

Regardless of what the future holds, having children is the best thing we could have done. Max is 10 years old; Samantha, six; and Montana, four. They are the joys of my life—24-hour, high-maintenance joys, but joys nonetheless. They keep me alive because I know they need me. I want to make them feel loved and secure. If I can give them enough confidence in themselves now, I know they’re going to make it whether I’m here or not. I don’t try to hide my disease from the children. I want them to feel that even if I’m sick, they can come talk to me. I’ve told them that I have a serious illness, that they have to be careful around me because I can be injured easily. I let them learn about my scleroderma little by little over time, as they wanted to know.

Of course, my disease has affected them. Once when I went to Max’s school, some kids pointed at me and started laughing. But I heard Max say, “Don’t laugh at my mother; she has scleroderma.” I was so proud he could handle it. I try to do as many normal things as I can with the children. When Max took up inline skating, I tried it, too, even though I had to be careful. I also encouraged my children to bring their friends home, so there are always tons of kids around. Sure, the house is messy, but I’ve learned that it’s so unimportant in the scheme of things.

The hardest thing about this illness is the day-to-day physical suffering. Not a week goes by that I don’t need to see one or more doctors. I’m in constant pain, and it can be excruciating. My joints freeze up when I lie down too long. Some mornings I look down the hallway from the bedroom to the kitchen and I think, That’s just too far. But then I say to myself, Okay, put one foot in front of the other. You can do it. I’ve found ways to cut corners. I buy my kids slip-on shoes because I can’t tie laces. We have simple meals. Snacks are kept in reach of the children, who set the table and do chores. But it’s important to me to have breakfast with the children, make their lunches, brush their hair and take them to school.

My family, my friends and my doctors look at every day I have not as a gift, but as an achievement. I’ve lived years longer than anyone had predicted. I believe the reason is that I made a decision: I’m going to live and beat this disease. I go to physical therapy regularly to strengthen and stretch my muscles. Acupuncture helps relieve the pain. I follow a special diet I put together with a nutritionist; by trial and error, I’ve discovered that I feel best if I avoid beef, chocolate and acidic foods. Over the years, I’ve tried several experimental treatments; they have not been cures but, once thoroughly tested, may eventually improve the quality of life for many sufferers. At times I take other medications, such as antibiotics and anti-inflammatory agents, for special symptoms.

What’s important to me is to function at as high a level as I can for as long as I can. I want to be independent. I have chosen not to make my disease central to my family, and I’ve succeeded, though our life is not easy. I am so fortunate to have Mark as my husband. I know it’s hard for him to see me suffer. It took me years to believe that he truly wants to be with me. I used to think he deserved a healthy wife who could go skiing with him and do all the things we loved. But after everything we’ve shared, I can see that I bring something to his life too. He’s proud of me and the foundation’s incredible success. He tells everyone about the time we met with the director of the National Institutes of Health (which allocates billions in funding), who said, “Sharon, I know all about the work you’ve been doing, and I think it’s the future for scientific research.”

The Scleroderma Research Foundation’s two research centers—one in San Francisco and one near Washington, D.C.—have made more progress in developing a diagnostic test and identifying the cells involved in the disease. Nearly every dollar the foundation raises—more than three million so far—goes to research. (Muscular dystrophy research receives $80 million in federal funds each year; by contrast, scleroderma, with twice the number of victims, gets only $1.6 million.) Our biggest annual fundraising event—Cool Comedy, Hot Cuisine—is held in Los Angeles with top comics such as Robin Williams, Gary Shandling and Bob Saget. How do I get such great talent? The same way I got topnotch scientists from many disciplines to concentrate on scleroderma: I don’t take no for an answer. When I learned that Lily Tomlin had an aunt who died from scleroderma, I wrote and called and faxed the performer for five years until she agreed to see me for 10 minutes; we talked for hours, and now she’s become a great supporter.

Stars like Lesley Ann Warren, Linda Gray, Marilu Henner and Dana Delany have responded generously to battle an illness that primarily targets women of childbearing age. The truth is, if scleroderma were a disease that more often affected children or men, we’d be light years ahead of where we are now. The illness had never before had anyone come forward to lead a fundraising and publicity effort. The public must know that scleroderma leaves children without their mothers. As chairman of the foundation, I’ve appeared on television and before Congress, the National Institutes of Health and other federal agencies to put a human face on the disease. Even though I’m a very private person, I’ve become a public figure. My efforts have earned a $5,000 American Award, given by the Positive Thinking Foundation to honor “unsung heroes who personify the American Spirit.” But what’s most gratifying is offering people who may be terrified and in pain something they really need: hope. They can look at me and see someone just like them who’s making things happen that will affect hundreds of thousands of people. Maybe that can get them through the day.

My goal is a cure. Will it happen in my lifetime? I don’t know because we’re racing against time. But I’m optimistic that our trailblazing path will be successful. Even if a cure is found too late to help me, at least I will have accomplished this: My children will know who I was and what I stood for. I just wish there were more hours in the day. I have a lot of living to do.

Sharon Monsky, as told to Dianne Hales

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