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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Interpolation

Evelyn Herwitz · November 19, 2024 · 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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: anxiety, body-mind balance, exercise, finger ulcers, mindfulness, resilience

What Comes Next, Comes Next

Evelyn Herwitz · November 12, 2024 · 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: anxiety, beauty, body-mind balance, mindfulness, resilience

Coping Strategy

Evelyn Herwitz · November 5, 2024 · Leave a Comment

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

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Filed Under: Body, Hearing, Mind, Sight Tagged With: election anxiety, managing chronic disease, resilience, stress

Seeking Serenity

Evelyn Herwitz · October 22, 2024 · 2 Comments

We’re enjoying a short spate of glorious weather here in Central Massachusetts—lots of sunshine, azure skies, trees cloaked in flaming colors, comfortable days and crisp nights. A few days ago, I woke early and noticed that the moon had not yet set in the west. It glowed like a golden spotlight in the soft dawn, before the sun had risen. Just beautiful.

I’m trying to stay focused on these daily wonders and not go down the rabbit hole of my iPhone—all too tempting during this fraught run-up to the presidential election on November 5. I find it hard not to read everything I can about the potential outcome, all the twists and turns of the final weeks of campaigning, in a vain hope of divining the result ahead of time. It’s ridiculous, I know. Still, I scroll.

I am deeply, deeply worried about the outcome.

And so, I pray every day to find the calm in the eye of the storm. Maintaining serenity is the only way for me to think clearly. Not easy to do right now. But it’s also the only way to keep myself healthy. Meditation helps. So does taking walks in beautiful weather. And reminding myself of all the many, small miracles of existence that are so easy to take for granted.

So I pass this along to you, Dear Reader, in hopes that it will help you to find your own peace of mind in these complex and chaotic times. 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.

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, stress

Bucket List Visit

Evelyn Herwitz · October 15, 2024 · Leave a Comment

I have loved the art of Paul Klee for decades. His whimsy, brilliant use of color, and evocative abstract works are an endless source of fascination and inspiration. He is also a personal hero. During his last five years, Klee lived with scleroderma—and despite physical limitations, this was his most prolific creative period.

Born in Switzerland in 1879, raised in Bern, Klee studied art in Munich and eventually settled there in 1906. His imaginative works and art theory grew out of his involvement with Der Blaue Reiter group of German Expressionists, including Vasily Kandinsky, August Macke, and Franz Marc, as well as his travels to Italy and Tunisia, and his years during the Weimar Republic teaching at the Bauhaus and the Düsseldorf Academy. In 1933, the Nazis dismissed him from his post in Düsseldorf, and he was labeled a “degenerate” artist.

Klee and his wife, Lily, returned to Bern and lived there until he died at age 60 in 1940. I have long wondered if the trauma of exile, losing his close circle of fellow artists and his reputation, as well as the ability to exhibit his work, all contributed to his illness. His symptoms of systemic sclerosis emerged after a bout with the measles. I’ve asked my rheumatologist at Boston Medical about Klee, and while there is no clear answer to how he contracted scleroderma (same for all of us with the disease, even 90 years later), he explained the latest theories are that scleroderma is triggered by a virus. Another theory that I just discovered is that Klee’s exposure to certain chemicals in his oil paints and thinners may have been a contributing factor.

In any case, whenever I go to art museums, I seek out Klee’s works. So, this summer, after our very intense visit to Israel, we traveled to Switzerland for a few days in Bern to visit the Zentrum Paul Klee, the largest collection and archive of his art in the world—a visit at the top of my bucket list. I was hoping to see some of his famous paintings of abstract angels—playful, sorrowful, mysterious, comforting. Unfortunately, none were on display, nor any of his largest paintings. But the standing biographical exhibition did not disappoint, as I discovered some of his smaller works that I had only seen in books. And there were also three of Klee’s wonderful puppets that he made for his son, Felix. After we toured the museum, we walked around the Zentrum grounds, the sculpture garden, and paid our respects to Paul Klee’s grave.

Here are photos of a few of my favorite art works and the museum, as well as Bern from a scenic overlook at a different location. Hope you enjoy the view . . .

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.

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience, travel, vacation

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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