I have been living with scleroderma for about 30 years, more than half my life. According to the mortality charts when I was first diagnosed, I’ve been lucky to survive even the first decade.
But I decided early on that I didn’t want to know the odds. As one of my rheumatologists once said when I shared my aversion for too much detail about this most complex and mysterious disease, “Denial is a good thing as long as it doesn’t keep you from getting appropriate medical attention.”
I’ve been blessed with excellent medical care, a loving, supportive family and a community of good friends. And I have been fortunate. Scleroderma manifests uniquely in each individual. In my case, what began as a slow but treacherous course of systemic sclerosis has evolved as the limited version of the disease—which is to say, as challenging as it is to manage, it could be much, much worse.
At its worst, for me, my scleroderma made it uncomfortable to blink and difficult to sip through a straw. The sclerosis—thickened skin—had traveled half-way up my forearms, like a tight evening glove, and was causing friction rubs in my wrists that felt like rubber bands stretching every time I flexed. The backs of my hands were so tight that you could not see the veins. My right index finger was hooked in a flexion contracture, and I was constantly whacking my knuckle against unanticipated sharp objects. I was plagued with arthritic joints and ulcers in my fingertips that would not heal—an issue that remains one of my biggest challenges. And this was just the tip of the iceberg.
By either a miracle or well-timed medical treatment, the sclerosis began to reverse after I started taking D-penicillamine, a common protocol in the late ‘80s that has since been questioned by researchers, but that I believe saved my life. Within six months of taking the drug, I realized that the skin on my face was beginning to loosen. I joked that I was probably the only woman in her thirties who was happy to have wrinkles.
In the years since, I built a loving home with my husband, became a mother, raised two incredible daughters to adulthood, taught feature writing to college students, won a journalism award, wrote a book about the demise of my city’s urban forest, grew a marketing department at a small New England college, led my synagogue as president, helped both of my parents contend with terminal illness, survived a lay-off, and am now building my own marketing consulting practice. In short, I have lived, and continue to live, a very full life.
And that’s the reason I’m writing this blog. Much is written about how to cope with acute illness; much less, about living with a chronic disease. I have learned a lot, and continue to learn every day, from my scleroderma. It is an integral part of who I am. My hope is to share how this disease in particular—but it could be any long-term, debilitating disease—shapes the way I understand my life, and what it means to live fully, embracing all the messy complexity of chronicity.
In so doing, I hope that my words offer insight and inspiration, whether you have scleroderma or love someone who does, provide medical care, or are affected in some other way by this or another chronic illness, as you travel your own life’s path.