I have the superpower to seek joy despite symptoms of scleroderma
How Superman and Christopher Reeve have inspired me over time
Years before my scleroderma diagnosis, I was a fighter. I was born almost three months premature and came into this world fighting. One of my maternal grandmother’s friends asked her if I would live. “She’s too ornery not to,” my grandmother said. Even then, she knew I was a fighter.
I also had quite the temper.
I discovered Superman comics (they came in many titles) at age 6. Superman inspired me because he’s big, strong, and powerful — physically, everything I wasn’t. Superman protected human beings. He never retaliated against them, no matter what they’d done. He fought injustice, and he always stood up for what was good.
When I watched the news with my parents and grandparents, I saw a lot of injustice in the world. I wanted to be like Superman and fight it, but I was only 6. Since I couldn’t save the world, I decided to make a positive change in myself by working on my temper. Superman inspired me because he never got angry.
My favorite movie portrayals of Superman were created by the late actor Christopher Reeve, starting with the 1978 “Superman” movie. In DC Comics, Superman is often depicted as joyful in flight. Reeve nails down this joy, and it’s one reason why his portrayal of Superman is my favorite.
When I heard about the release of the documentary “Super/Man: The Christopher Reeve Story,” I had to watch it.
Reeve’s spinal injury
Reeve sustained a spinal cord injury in 1995, when he was thrown from his horse during an equestrian competition in Culpeper, Virginia. He landed on his head and broke his neck, which paralyzed him from the neck down.
Before his paralysis, Reeve had been an active amateur sportsman. He enjoyed sailing, riding bikes, skiing, swimming, playing soccer, and riding horses. He was also a father and shared his love of sports with his children. All of this changed after his accident.
Reeve went through surgery to reattach the two broken vertebrae in his neck to his skull, but physicians gave him only a 50% chance of surviving until the end of the day. Reeve’s wife, Dana, described those first days and weeks of her husband’s struggle to survive as the toughest challenge of his life. But he was a fighter, she said, just as I was when I was born.
Reeve was unable to move or breathe on his own in those early years; eventually he regained some movement and limited ability to breathe independently. His family has said that he allowed himself a little self-pity at first, but after that, he put feeling sorry for himself out of his mind.
With the support of millions of fans around the world and his family and friends — including Katharine Hepburn, Glenn Close, and Robin Williams — Reeve fought to live. In the years after his accident, he became another kind of champion as an advocate for people with disabilities.
The documentary contains animation sequences in which Reeve is portrayed as a stone statue with arms upraised, as if he were rising in flight. When the narrative covers his injury, the statue of Reeve begins to change. Green shards of kryptonite crystals — which Superman was vulnerable to — erupt from its neck, back, arms, and legs. The hero becomes burdened with the reality of a permanent disability. He becomes vulnerable.
My scleroderma
Scleroderma has been called the disease that turns people to stone. Even now, years after my diagnosis, parts of my body feel hard.
There are times in everyone’s life when they feel vulnerable. But living with a chronic illness demands bravery amid fear, patience, and determination. All such diseases — especially scleroderma, which is unpredictable and affects everyone differently — can cause anxiety and uncertainty. Some of us live with daily pain. I do. Sometimes simply living day to day requires us to expend more physical, mental, and emotional resources than we have.
Since every day is a struggle, I have mornings when I’m disappointed to wake up. While I can’t fly like my favorite hero, I can do things that make me feel joy and refill my emotional cup. While I felt powerless against injustice as a 6-year-old, today I have to find what I can control to improve myself. Everyone has that superpower.
I have little in common with Reeve other than living with a disability. I’m not Superman, no matter how much 6-year-old me might have wished I was. But in my own small way, I can improve myself, and even help others along the way. That’s why I choose to use my voice as an advocate by writing this column.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.
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