One of the most complicated aspects of scleroderma is how it changes our relationship with our bodies. Hands that were once dexterous now are cramped, facial skin no longer flexes. It can become very hard to pick up objects, bend over, reach. In its most virulent form, this debilitating disease literally traps you in your own skin. It’s painful, exhausting, achey. Not to mention internal organ damage to heart, lungs, kidneys, gut.
As I’ve written before, I’ve been graced with a reversal of some of the worst aspects of scleroderma during my first decade of the four that I’ve been living with this chronic disease. I credit the use of d-penicillamine early on, a treatment that was never fully embraced by the medical profession due to inconclusive research. But it worked for me, loosening tight skin in my hands, forearms, and face. I still have abnormal skin that limits my dexterity and ability to open my mouth, but nothing like before, when it was becoming uncomfortable to blink.
Grateful as I am with that gift, I also still wrestle with how scleroderma has affected my face and damaged my hands. Scleroderma ages you prematurely. I’ve learned to make the best of what I have, but it can still be discouraging to look in the mirror.
So, I deeply appreciated an interview that I heard over the weekend with Krista Tipppet of the On Being Project, and Matthew Sanford, about “The Body’s Grace.” Sanford, now in his 40s, survived a car crash when he was 13 that took the lives of his father and sister, and left him paralyzed from the waist down. He speaks of a deepened relationship with his body, a knowing derived from inner silence, a reconnecting with those parts that no longer feel and work as they once did.
Sanford likens this awareness to “walking from a well-lighted room into a dark one. At first, you can’t see anything. But if you sit, and you pause, and you listen, usually there’s enough light to get across the room. It’s not going to be like turning the light back on, but in fact, the world gets this other kind of texture that makes it beautiful. It also makes it scary in the dark; it goes either way.”
Coming to terms with a life-altering accident or disease is a lifelong process that Sanford calls a “healing story.” And, as he and Tippett discuss, all too often, in our youth-obsessed culture, the healing stories we tell ourselves are ones of overcoming physical and emotional adversity. With enough willpower, we, too, can be the 80-year-old who runs a marathon or skydives; we, too, can “power through” anxiety or depression.
Though willpower is an important skill for confronting physical weakening or loss or just plain aging, Sanford suggest that it shouldn’t be the sole or primary skill. Finding your own, unique path of mind-body integration when the connections are weakened or severed is a journey toward a deeper relationship with your physicality and your body’s miraculous striving toward healing, even when damaged. It is also a journey toward deeper appreciation of your connections with others and the world.
We are always so much more than our medical diagnoses. We are so much more than our physical limitations. Each of us writes our own healing story as we learn how to see in the dark.
Here’s a link to the On Being podcast interview with Matthew Sanford as well as a transcript.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.
Image: Spenser Sembrat
This post touches on an aspect of contemporary culture that has always aggravated me: the idea that you are in complete control of your body at all times and can “power through” anything that afflicts you if you just have enough “willpower,” which often seems to be equated with moral virtue. This idea is cruel: because it places blame on anyone with a physical challenge. For example, I hate the way obituaries routinely refer to the deceased person’s “heroic battle” against cancer. What, weren’t they heroic enough? Or should we regard them like the doomed defenders of the Alamo?
If you want to praise your loved one’s demeanor under the hardship of serious illness, praise how they always tried to lift the spirits of anyone who visited them, to find a kind word for the medical professionals who cared for them, and to use the physical abilities left to them to their best advantage. Praise their concern for how loved ones left behind will be cared for themselves. Describe their legacies. All this would be powerful testimony of how the human spirit copes with mortality, without cancelling it.
Indeed, in Tolkein’s “Lord of the Rings” cycle of fantasy novels. the elves–human-like except that they live for hundreds of years–envy the humans their focused life spans. These, they believe, enhance the meaning of life.
Thanks for this, Pat. I think the problem in the language you cite here is how everything is cast as a contest or battle. Disease is part of the human condition. I don’t think of myself as fighting scleroderma. That’s why I called this blog Living with Scleroderma. Contending with a debilitating disease is a process of redefining your relationship with your body, as Sanford so eloquently describes in the interview.