Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

That Time of Year

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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.

Interior Monologue

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In less than a month, 25 days, to be exact, the winter solstice arrives here in the Northern Hemisphere. Which means that in just about two months, even as the sun will be visible about the same lenth of time as it is today, it will seem a little brighter because we’ll be gaining, instead of losing, a few seconds of daylight every day.

I always feel better when we finally reach the first day of winter. Even when it’s cold in January (though that is a relative concept these days) and I have to layer up to keep warm, even as our heating bill balloons, I feel a bit more optimistic, knowing that each day the sun will be shining a bit longer.

But, of course, this is all in my head.

So much of how we experience the world depends on the stories we tell ourselves. They can be empowering. For decades I have told myself that my scleroderma may limit me in certain ways that I need to respect, but it does not define who I am. That story has become my reality, and it’s enabled me to keep going.

But those self narratives, which are often not obvious when deeply entrenched, can also be the source of much pain. When we filter our lived experience through old, worn-out stories that were birthed in childhood, we get mired in doubts and fears and anxiety.

There are a lot of real reasons for doubts and fears and anxieties right now, but I am trying my best not to allow myself to get stuck in old, worn-out narratives that cramp my ability to see clearly how best to respond. It’s hard. Then I remember the natural cycle of the sun, admire November’s sharp shadows, and ground myself, once again. And if the prospect of lengthening days gives me a boost, even if it’s just in my head, I’ll take it.

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

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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

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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.

Coping Strategy

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Stress is contagious this Election Day. If you google “how to avoid election anxiety,” you’ll find a plethora of articles with titles like “Last-minute tips for coping with election stress and anxiety” or “Don’t let election anxiety get you down” or even “I’m a Therapist: Here’s How I’m Coping With Election Anxiety.”

Most of the tips are common sense:

  • Be mindful. Focus on the present moment.
  • Limit your intake of political news, polls, and social media.
  • Practice self-care. Pursue activities that give you joy.
  • Worry less. Do more to support your candidate in constructive ways that work for you.
  • Breathe.

I’m trying to do all these things. But I am also a political news junkie. For me, being as informed as possible via a range of trusted sources helps me to feel ready for whatever comes next. This is not for everyone. But it’s just the way I’m wired.

At the same time, I am also doing my best to focus on what’s in front of me. Editing for my clients is a great meditation. Working on Novel 2 is a dive into the world of my imagination, where time is suspended. Cleaning the house brings the satisfaction of putting things in order that are within my control. Taking walks clears my head. Watching anything that makes me laugh refreshes my heart. Reading great novels is an essential escape, as well as an immersion in another writer’s art. On Monday nights, I’m back to my acting class, which is wonderful.

Hugs help, too.

So, Dear Reader, sending you good karma and serenity for today and whatever comes next. If you haven’t yet, be sure to vote. See you on the other side.

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: Phil Hearing