Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Music of the Spheres

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I woke up around 5:30 one morning this week to the sound of intermittent electronic chirping. At first, I thought it was my husband’s beeper. Occasionally Al, a hospital social worker, is on call for ethics consults.

But the sound was coming from the hallway outside our bedroom. Alas, it was our smoke detector’s low battery alert. Important, yes, but not my favorite way to wake up. So I stumbled out of bed, grabbed our TV remote and shut off the damn thing. (And, yes, made a mental note to replace the battery.)

If only I could do the same for the constant ringing in my ears. I’ve had tinnitus for a couple of decades now, ever since I tried a course of Trilisate to relieve joint pain.

A compound of two salicylates—derived from salicylic acid (which is the basis for aspirin), derived from salicin, the natural analgesic found in weeping willows (which made willow bark one of Hippocrates’ curatives)—this anti-inflammation drug also causes tinnitus in about 10 percent of users.

I was one of the lucky few to have the medication damage the tiny hair cells in the cochlea of each ear, my right worse than my left. The result is a constant ringing that has become more pronounced and annoying in recent years.

The noise has become loud enough that I had begun to worry it was affecting my hearing until, one night, when Al was snoring and I couldn’t sleep, I put a pillow over my head and could still hear him quite clearly plus every little creak in the house, along with the ringing. So, at least for now, that’s one fear allayed.

Lying in bed, trying to get back to sleep after shutting off the chirping smoke alarm, I was instead swamped by the ringing, which (as any one of the millions who live with this condition knows) is always worst when everything around me is quiet.

So, being a writer, I decided to listen to the sound and try to describe it. Our radiators began hissing. Similar, but not quite. It’s a rushing noise, but also a ringing. But not quite a ringing. More like a a very high pitched, constant, tinny tone. But not quite constant. It ebbs and flows within a narrow range.

If it weren’t so annoying, the sound would be etherial. It reminds me of space audio—radio emissions from the planets in our solar system, collected by the passing Voyager and Cassini satellites, and converted to sound. The recordings, made by physicists at the University of Iowa, are fantastic, bizarre, eerie and cool. My ringing best approximates the sounds of a Jovian chorus, without the clicking.

And that’s how I’m trying to deal with my tinnitus. Like my scleroderma, it’s there. I can’t stop it, so as long as I have to live with it, I might as well make the best of it as an otherworldly internal concert—my personal music of the spheres.

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.

Making Stuff

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For as long as I can remember, I’ve had cold hands. As a kid, growing up in New York winters, I would play outside making snowmen until I was too numb to feel my fingers and toes. Summers on the Cape, I’d jump in the waves at Nauset until I was blue and my teeth chattered nonstop.

But none of this mattered. I loved to do, to plunge into the world around me. And my favorite means of engagement was through my hands, making stuff. I could do anything with my hands—draw in any medium, do Japanese brush painting, throw pots, make copper enamel jewelry, create tiny origami animals, sew doll clothes and my own, knit, crochet, embroider, needlepoint.

I could also make music, on the full range of recorders; the violin (I was first chair in my high school orchestra and worked my way up to Mendelssohn’s violin concerto); viola; alto, bass and contra-bass clarinet; tenor sax; classical guitar; piano and a little percussion.

When I was about 10 or so, I lay in bed one night, wondering what it would be like to lose one of my senses. I couldn’t decide which I valued more, sight or hearing—but the one thing I knew was that I never wanted to lose touch and the use of my hands.

I could never have imagined the strange shape of my hands today. Decades of severe Raynaud’s have rendered my hand circulation erratic. Scleroderma has bowed and shortened my fingers; the bones have resorbed so much that my hand X-rays look like someone has taken a bite out of each fingertip, and my thumbs are filled with a veritable Milky Way of calcium deposits that erupt through the skin from time to time. I bandage chronic fingertip ulcers twice daily, keep vigil against infections and am constantly reminded, when I try to do something as simple as put change in my wallet at a cash register, that I just need more time than most to do basic tasks.

But I’ve often thought that the fact that I started off with such incredible fine motor coordination has enabled me to continue creating with skill, even as the process is so much harder.

My father had a saying: “Any problem can be solved if you have the right tools.” So this has been my watchword. My drawing pencils each wear colorful triangular rubber grips to cushion my fingers. I’m never without a pair of tweezers, used for everything from picking up beads that I’m threading on jewelry wire to pulling out the bobbin from my sewing machine. I protect my bandages and ulcers with plastic gloves whenever I cook or handle material that’s wet or could be a source of infection.

I can’t play the violin or guitar any more (yes, Doctor, I really did play before), nor a wind instrument, and I find pressing the keys on a normal piano keyboard difficult (even though I still harbor a wish to someday, somehow, learn to play Gershwin).

But I do make music in a new way—through my writing. For me, writing is all about melody, rhythm, assonance and dissonance, crescendos and diminuendos of sounds tied to words tied to thoughts.

And I make visual art through video that I shoot with a simple, lightweight camera and manipulate through the magic of my iMac.

I still miss my hands, even though I can barely remember what it feels like to be normal. Then keep making stuff.

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.