Our skin is our body’s largest organ. It protects innards, moderates temperature, enables sensation and serves as our first line of defense against infections. When healthy, it is amazingly flexible, soft, adaptable to however our muscles and fat change shape.
Skin is also vulnerable—to lacerations, blows, piercing, burns. To deal with life’s inevitable struggles, we are told to grow a tough hide, like a rhinoceros, or have a stiff upper lip.
For those with scleroderma, of course, these admonitions are ironic. There is nothing worse that having skin too stiff or tough to easily flex and move. You feel all the more vulnerable, not stronger, trapped in your own leather.
I was thinking of this as I walked through a new exhibit at the Worcester Art Museum on Sunday afternoon, “Knights!” Here are some exquisite examples of medieval plate armor and weapons, period paintings and sculpture, juxtaposed with a powerful photojournalism essay on guns and drug wars by the Pulitzer Center for Crisis Reporting. Commissioned for royalty, the suits of armor are intricately detailed. Designed to intimidate, the deadly weapons are engraved with oaths and flourishes.
Everything looks incredibly heavy. And it is. You can slip your hand into a gauntlet—an armored glove—and flex your grip. This takes some strength. The plates on the back of the leather fingers feel like a row of linked flatware.
Viewing all the pikes, spears, two-handed swords, poleaxes, sabers and other weapons designed to pierce, crush and dismember, I can understand why knights wanted to sheathe their bodies in heavy metal. But I wonder what good it did them in the heat of battle.
How could they maneuver in all that steel, iron and brass? The suit of armor, alone, weighed about 50 pounds. This they wore over padded woolen or linen undergarments that absorbed sweat. Then they still had to carry all their battle axes and swords. If they fell off their armored horses, I can’t imagine how they would have been able to get up easily or regain balance or run and fight in the midst of all the carnage. It would have been like being trapped in a steel can.
But at least they had a choice. At the end of a won battle or joust or court appearance, the knights of old could take off their armor and stretch and flex again.
Not so with scleroderma. We can’t peel off our toughened, leathery hides. We have to learn to live within that abnormal skin. Sometimes, as has been my good fortune, thickened skin softens again with years and serendipitous treatment, though it never fully returns to normal. Too often, it doesn’t.
There is a battle to be won, here. But it is less a battle with the outside world—although learning to maneuver and manipulate and manage pain and protect your damaged hands and limbs is a significant undertaking—than an inner struggle to maintain your sense of self and self-worth.
Scleroderma may entrap our bodies. But it cannot steal our souls. For all of you who struggle daily with this disease, I hope, no matter how stiff your joints, how achy and itchy and pained your too-tight skin, or how exhausted you feel as you read this, that you cherish your uniqueness and let your spirit soar free.
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.
