Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Inner Artist

· · 4 Comments

When I was growing up, my favorite thing to do in the whole world was drawing. Give me a pencil and a pad of paper, and I was in heaven. One year for my birthday, my parents gave me a drawing kit by Jon Gnagy, whose popular 1960’s Learn to Draw show was must-see TV for me. Along with an instructional book that taught you to analyze objects in terms of spheres, cones, and pyramids, the box contained drawing pencils and paper, a soft eraser, a blending stick, and charcoal. I spent hours in my room, sitting on the floor, working through all the exercises.

As I got older, my favorite drawing medium became pen and ink. But sepia conté crayons, colored pencils, and pastels were also high on the list. Every summer, I would bring a drawing pad and implements on our family vacations to Cape Cod and sketch at the beach. I took summer art classes as a preteen and a drawing class in college, watercolor and drawing classes in my twenties, and since then, occasional classes at our wonderful art museum. For our young daughters, I would draw illustrations and, in a reprise of childhood, would bring my pencils and paper to the beach for our Block Island vacations.

In recent years, however, I have hardly drawn at all. Some of it has to do with damage to my hands from scleroderma. In fact, that’s probably the main reason. Not that I can’t still draw, but when I have a lot of ulcers, it’s just harder to hold a pencil for any length of time. Or so I tell myself. I use triangular rubber grips on my drawing pencils to ease the pressure, and that definitely helps. But something has been holding me back—most likely, just reluctance to push my hands too far.

Even so, I’ve had a New Year’s resolution for more than a year to get back to drawing, which I managed to do only twice in 2024. Each time, once sketching my African violet, and once on Block Island last June sketching Al at the beach, gave me great pleasure. But I still kept putting it off.

On Sunday, I decided to try again—this despite having five bandaged fingers right now. I needed to do something joyful and rejuvenating after a week of such dark news. I pulled out my colored pencils and my mostly empty drawing notebook, set up a vase of roses on a low stool, so I could look down into the blossoms, and drew. It was wonderful. I sank right back into that peaceful, meditative space of observation and interpretation. No matter the ulcers, I could still control the pencils as well as ever. When I finished, I felt relaxed and happy and in tune with my inner, non-verbal artist.

She’s been clamoring for attention. She deserves more.

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.

That Time of Year

· · Leave a Comment

It’s darker and colder, and winter is definitely on its way here in New England. Most of the leaves have fallen, and the city has swept the streets, so we no longer drive amidst canyons of leaf piles. Halloween witches and Thanksgiving turkeys have given way to Christmas lights and inflatable snowmen.

My fingers are not happy. As the temperature drops and the air gets drier, my skin becomes more fragile and ulcers appear. Right now, there are five: one on my left thumb, a couple on my right thumb, one on the tip of my right index finger, and one on the tip of my right ring finger. I am, as you’ve undoubtedly surmised, right-handed.

The thumb ulcers are nothing new. I have these perpetually, year-round. In fact, I can’t recall when I last was able to go without bandages on either thumb, mainly due to calcinosis lurking beneath the surface. The index finger ulcer is new, however, due to another calcium deposit. It is healing, slowly. The ring finger ulcer is more like a thin opening in the skin surface due to dryness. It is harder to heal, maybe because the skin is just very delicate.

So, I clean and bandage them twice a day and am very careful to keep them free of infections. It’s such an ingrained routine at this point that I don’t think much about it—except that I’m going through boxes of bandages at a faster rate than normal. For most of the summer and fall, I just had my thumbs to deal with.

There is some judgment involved, however. At what point do I leave off the bandage at night and allow my finger to heal on its own? It’s a real balancing act. If I forgo the night bandage too soon, the ulcer can get too dry and uncomfortable and wake me up. But if I rely on bandaging too long, then the ulcer may take even longer to heal and possibly get larger. I recently weaned an ulcer on my left index finger successfully. I’m working on the right ring finger this week.

I also need to be careful not to overuse my hands. I was reminded of this over the holiday weekend, when I was immersed in a sewing project that required some hand sewing—a frustratingly major challenge, given my resorbed fingertips and all the bandages. The result was an enlarged ulcer on my right thumb. Aargh. At least the project came out well.

Always an adjustment, heading into winter, no matter how many years I’ve lived with scleroderma. So it goes.

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.

Interpolation

· · Leave a Comment

My body is trying to tell me something. My shoulders are in knots. My fingers have developed more ulcers. I’m having trouble concentrating—or, rather, getting myself to the point of concentrating.

This morning, I woke from a dream that I couldn’t find a file in my computer, because the search function was screwed up. What was the file? Some essay I’d written that was titled “Megalomaniacs.” Which, as I write that word, includes an interesting interpolation of letters, which, if you’re following American politics, is pretty obvious.

Before I sat down at my computer to write this post on Monday afternoon, I took my walk around the neighborhood. This is always my immediate remedy for tension. The air was cool but pleasant. Mounds of brown leaves lined the streets, some with squashed pumpkins plopped on top. Most of the maples were bare, though a few pale golden leaves still clung to branches, their tint warmed by the honeyed glow of a sinking sun. An occasional car hummed by. Much of the way, I heard only the shuffle and crunch of leaves beneath my feet. No leaf blowers, thank goodness.

Most of my neighbors’ Halloween decorations had come down, but a few front steps still displayed harvest gourds. Other neighbors had been tidying their yards for winter. One who notably had choked a drive and detached garage with all kinds of stuff that only a hoarder could love had reduced their stash to just one small pile. Another had ripped ugly beige aluminum siding off much of their home to reveal moss green shingles. Even though they’re in need of replacement, the house already has a lot more character.

I passed other women, out for a stroll. We smiled and nodded to one another. Everything seemed normal, which was reassuring.

By the time I got back home, my shoulders had loosened a bit. I was breathing more deeply, always a plus. I’ve been carefully tending my new ulcers, and I was able to walk with my hands out of my pockets for part of my route, without discomfort from the cool air. My head was clearer.

Still, one encounter lingered—a brief chat with a neighbor who was sitting on her front lawn with her American flag, trying to figure out how to display it. “It just won’t hang right,” she said.

Indeed.

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.

What Comes Next, Comes Next

· · 7 Comments

The election is over. It is not the result I had hoped for. For now, I am just trying to keep my head on straight and focus on what’s in front of me.

And so, I took a walk Sunday afternoon, in the sharp, unflinching November light that reveals each detail of bark and lichen and crumbled leaf. A friend had mentioned a lake not far away that you can circumnavigate via a pontoon bridge that connects to a woodland trail. The weather was pleasant, not too cool, not too hot. And I needed to clear my head.

It took me about 45 minutes to walk the full route. Water gurgled as it lapped the pontoon bridge, a popular attraction for families pushing strollers. A gaggle of teen boys asked me to take their photo against a backdrop of sun-illumined lake. Children ran ahead of their parents, delighting in the novelty of walking across water. Others whined until they were picked up and carried by moms, “just for a little while.”  The woodland walk was less traveled, peaceful, more conducive to sifting and sorting my emotions.

What struck me most, however, along the whole route, was the number of different languages I overheard. That, and the friendly greetings of strangers. Whatever the outcome of this election, we are a big-hearted country made up of people from all over the world who call America home. Many of us, myself included, are children of immigrants and, yes, refugees. Whatever happens, we must remember that. Our diversity, our generosity, our kindness—these are our true strengths.

Here are some photos. Hope you enjoy.

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.

Take a Deep Breath

· · 4 Comments

As we head into next week’s election, I’m reminding myself to breathe. Just breathe.

And the way to breathe matters. A couple of years ago, I discovered an important lesson: If you breathe from your chest when you are stressed, it triggers your fight-or-flight response, an adrenaline rush, and fuels anxiety. If you breathe from your diaphragm, it cancels out the fight-or-flight anxiety reaction and calms you down. It really works. Here’s an explanation from the Cleveland Clinic, which is an excellent source of vetted medical information.

Simple? Yes. Why it took me until I was in my late ’60s to learn this? No clue. This practice is central to meditation, which I also find helpful. But I didn’t know how the chest breathing really exacerbates stress until I was untangling the very uncomfortable sensations of what turned out to be Type II Pulmonary Hypertension, a late stage complication of scleroderma.

So, I pass this lesson along to you, Dear Reader. I hope you find it helpful as you confront your own worst fears and stresses.

Be well.

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: Harli Marten