Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Whatever You Do, Don’t Treat Me Like an Invalid

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Years ago, when I first learned that I had one of three possible auto-immune diseases—either rheumatoid arthritis, lupus or scleroderma, pick your poison—I was terrified. I knew RA could be crippling, and I knew that lupus had killed one of my literary heroines, Flannery O’Connor, at 39. I’d never heard of scleroderma, but the more I read, the more overwhelmed  I felt.

Al and I were newly married, and we were both in shock by my emerging diagnosis and how my body was changing. For a wedding present, knowing I wanted to get back to playing music after a decade of dormancy, Al had my violin repaired—the fallen sound post repositioned, the bridge straightened and the strings replaced. But the first time I picked it up, I realized that I could no longer wrap my fingers around the neck or press on the strings, let alone flex my wrist for bowing.

As my hands got stiffer, my joints became more inflamed and I felt more and more exhausted, the simplest tasks—like pulling on a pair of socks or filling a pot with water and placing it on the stove—became difficult and painful. One weekend, out of the blue, I  experienced a sharp pain with each breath; a trip to urgent care revealed pleurisy. Sensitive to cold from childhood, my fingers and toes now flickered numb throughout the day. I still didn’t have a definitive diagnosis, but my rheumatologist correctly suspected scleroderma.

Neither of us knew how to talk about it. When we first started dating, Al’s mother had warned him that I seemed too fragile. Now it appeared that her words were a harbinger of disaster. We sought help in couples therapy, which opened the lines of communication. But we were both still scared.

When we got together with friends, I would inevitably pick the brains of any health care professional in the crowd (of which there were many, all of them supportive and very concerned). This was before the days of the Internet and before there was much detailed information about scleroderma available to the general public. Al went with me to a scleroderma support group, but I found it depressing rather than uplifting, so I quit after several sessions.

Friends and family were concerned and tried to be helpful. But the reality was that scleroderma is so strange and obscure, that no one had a point of reference. Our physician friends were aware of the severe risks, but they couldn’t predict the course, any more than my rheumatologist.

I soon discovered that, despite everyone’s best intentions, most people really didn’t want to hear about it. We were all in our thirties, friends were having children and building their careers, and most were quite healthy. I was a newlywed the second time around, desperately wanting this marriage to work, facing my mortality. Not the stuff of social banter.

If I did start to share, I would typically get one of several reactions:

People would listen but soon get distracted or change the topic because they couldn’t deal with it. Or they’d listen and then tell me about someone else they knew with an even worse condition, perhaps as a way to relate my predicament to their own experience, but it always made me feel unheard. So I’d shut down.

People would try to offer advice. This was always well-meaning, but most of the time was of no help, since they didn’t really want to take the time to understand what I was dealing with because it was so threatening. So, again, I’d shut down.

People would feel sorry for me and try to mother me with their concern. Of all the reactions, this was the worst. If there is one thing I can’t tolerate, it’s being treated as an invalid.

While I appreciate the underlying compassion, I never want to be handled as if I can’t do for myself. Ultimately, that level of smothering concern is more about the helper’s need for control over the unknown than the helpee’s need to be cared for. It completely undermines the fighting spirit that’s so essential to managing this and any other chronic disease.

There’s a fine line to be tread here, of course, because I also have had to learn to ask for help. There are many things that I can’t do easily anymore, and I’m no longer ashamed to be assertive in requesting assistance.

But my family and closest friends all know by now how important it is to me to continue pushing back, managing this complicating disease, outsmarting it, accepting it, running with it, on my own two feet.

Al, to his great credit, has never babied me, even when sometimes, in weaker moments, I wished he would. For the 27 years we’ve been married, with scleroderma as our third partner, he has always helped me when needed, but never expected less of me than I do, myself. And that has been one of my most powerful medications.

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.

Walking in Your Own Landscape

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Willem de Kooning—he of the loaded brushstroke, juicy marbled swirls of paint, positive-negative-black-white space, deconstructed women, lush landscape abstractions—in his eighties, developed Alzheimer’s. But he kept on painting.

In contrast to his abstract expressionist works of earlier decades, with their layer-upon-layer-upon-layer of bold color swaths, de Kooning’s late paintings are spare and shimmering, his palette reduced to contoured ribbons and cul-de-sacs of red, blue and yellow looping through tinted white planes.

I was drawn to these paintings from the 1980s on my second visit to MoMA’s de Kooning retrospective this past Monday, the exhibit’s closing day. On my first visit in October, overwhelmed by the explosion of color, I wandered from painting to painting, trying to absorb the sheer energy and creative output of this complicated man who struggled with depression and horrific bouts of alcoholic binging through much of his seven-decade artistic career.

But this time, I focused on the late paintings. The body of de Kooning’s oeuvre is intricate, complex, each piece a world of ideas and inner struggle and striving for balance. What fascinates is how his late works lighten.

Known for agonizing over each piece, scraping down the canvas and painting again and again for months until he was satisfied with the results, de Kooning began to let go as his short-term memory and sense of future diminished.

“Around 1983,” write Mark Stevens and Annalyn Swan in de Kooning: An American Master, “having concluded he had little time left, de Kooning decided to forgo second-guessing and let each canvas stand or fall on its own merits. ‘There’s no end, really,’ he said of his early-eighties paintings. ‘I just stop it. Abandon it.’”

Stevens and Swan continue:

“Two years after de Kooning began his eighties paintings, it became clear that he must paint—not only to create salable work, but also to keep him mentally and physically alert. The few times that he stopped painting in the mid-eighties (when, for example, he once hurt his back), his mind deteriorated.”

As de Kooning’s dementia worsened, his assistants did more to help structure his compositions and focus the starting point for each canvas. Stevens and Swan note: “the paintings that emerged now were de Koonings with an asterisk.”

Still, de Kooning painted. His art was his life and his anchor as his mental function deteriorated. There is courage in his final works—to continue, despite huge cognitive and physical obstacles, to pour his inner world through his brush onto canvas. And there is a steadfast determination to continue following the ribbon of paint, wherever it leads.

“Then there is a time in life when you just take a walk,” de Kooning once told film maker Robert Snyder. “And you walk in your own landscape.”

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.

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.