Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Dropping the F-bomb

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Whenever I smash one of my fingertip ulcers—reaching for a faucet, reaching for the gear shift, reaching for a doorknob, any time I’m rushing and not paying attention—I curse.

And the only curse that works is the f-bomb. It’s short, explosive and foul. It’s the best way I know to discharge my anger and diffuse the intense, sharp pain.

My fingertip bones are severely resorbed, so the tips are jagged. When I hit an overlaying ulcer, it’s a double whammy of banging a deep sore on the outside and stabbing it from the inside. Even with my bandages, which provide a little cushioning, it hurts like hell.

But oh hell doesn’t cut it.

I also curse when my hands won’t do what I want.

A spoon slips through my grasp and hits the floor. F-bomb.

Coins slide out of my palm and scatter. F-bomb.

It takes five tries to pick the coins off the floor. F-bomb.

I can’t grab a knife from the flatware tray and have to pry it out with another utensil. F-bomb.

It takes ten minutes to align the zipper pull and zip up my winter coat. F-bomb.

I have a battle with shrink-wrap and the shrink-wrap wins. F-bomb.

I drop my cell phone getting out of the car and the back falls off into the sewer (yes, this really happened once). F-bomb.

Sometimes, when I’m cooking a big meal for company and getting tired and things start slipping out of my hands—like a potato I’m peeling or an onion I’m slicing—I don’t simply drop the f-bomb, I start throwing utensils into the sink and slamming drawers and yelling about how the counters are too cluttered and there’s no place to put anything. My family knows enough to stay out of the way.

I try my best not to curse when others are around or within earshot. I don’t want the f-bomb to creep into my everyday conversation and contribute to the decline of civil discourse.

But I hate this disease. Even though I’ve been living with scleroderma for three decades, and most of the time I can manage quite well, it really gets to me some days. I hate the way it’s wrecking my body. I hate how it’s robbed me of activities I love. I hate all the bandages, the ulcers and infections. I hate all the trips to various doctors and all the waiting in waiting rooms and all the medications. I hate discovering yet one more bizarre complication, like the fact that the roots of my molars are resorbing or the time the left side of my face went numb and I thought I was having a stroke and had to go to the ER and learned that I had an inflamed trigeminal nerve that the ER doc diagnosed as trigeminal neuralgia, which fortunately turned out not to be the case. It was “just” a rare neurological issue associated with scleroderma.

There’s no polite way to put this: When your body craps out on you, it sucks. And with a disease like this, you’re stuck knowing there’s no cure, for now, probably not in your lifetime, and even if, God-willing, there is a cure, your body’s too damaged for it to make a difference, and your health is only going to get worse.

Like aging.

When my sister and I were kids, our family used to travel by overnight train from New York to Cincinnati to visit my grandparents every December. Inevitably at the big family gatherings, all the adults would start complaining about their latest physical ailments. We’d sit on the side and snicker to each other, “When are they going to start passing around their X-rays?”

Fifty years later, I find myself engaged in those same conversations with my friends all too often. The older we get, the more stuff malfunctions, breaks and hurts. It’s shocking when it starts. We all know that our bodies are going to give out and we’re going to die someday, but we don’t really want to believe it until our mortality slaps us in the face. I’ve just been battling the inevitable much longer than most of my peers.

So I guess I have something of an advantage in the how-to-cope sweepstakes. But that doesn’t help on days when my house keys slip through my fingers and I drop the package I’m carrying as I try to pick them up and have to take off my glove to grasp the keyring but it’s too cold and my fingers go into a Raynaud’s spasm.

Then the only thing that works is dropping the f-bomb.

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.

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.