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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

Choose Humanity

Evelyn Herwitz · October 8, 2024 · Leave a Comment

I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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, Taste, Touch Tagged With: resilience, stress, travel, vacation

What I Have in Common with Simone Biles

Evelyn Herwitz · August 6, 2024 · 4 Comments

My favorite unit in high school gym class was gymnastics. Not that I was any good at it. Decked out in our light-blue gym uniforms (one-piece cotton bloomers with a snap front that were the antithesis of style), I would attempt a simple vault over the horse, try to calm my fear of heights as I walked on the balance beam (in sneakers!), and swing from the uneven bars. The cool girls could do a penny drop. Not I.

Even still, I enjoyed the challenge (except the beam). Maybe because I was just competing against myself and not in my usual role as the weak link in a team sport. Maybe because it made me feel strong. My one big accomplishment in my senior year was clambering up a thick rope to the high gym ceiling, something I never expected to be able to do.

Maybe that’s why gymnastics has always been my favorite part of the Summer Olympics, especially watching young women achieve seemingly impossible feats of strength and coordination. Even if I could never do that myself, I thrill at their achievements. This year was supercharged by Simone Biles’s triumphant return. What a marvel to behold!

Much as I admire Biles for her extraordinary athleticism, I admire her all the more from what I learned in a profile in The New York Times: that Biles and I share a particular love—of turtles. As a young athlete, she went at her own, unique pace to build her repertoire, not caving to unrealistic goals set by coaches. She knew herself and what she needed to learn and grow, in her own time. Her mother, Nellie, called Simone her “little turtle.” According to the article, Nellie used to tell her, “Don’t worry that you are moving slowly. Just be sure of what direction you are going in.” Before every meet, she would give Simone a tiny porcelain turtle. Others picked up on the theme, and she now has a huge collection.

I, too, have a collection of all kinds of turtle figurines. This started when I was a marketing director at a small New England college. I used to give little plastic turtles to my staff as a reminder to take the time to do the job right, rather than rushing and having to spend twice as long fixing it. This guidance was deeply appreciated, especially in a pressure cooker environment rife with unrealistic demands.

Over the years, family and friends have added to my collection, which resides on the bookcase in my home office. I am known for fawning over turtles in their natural habitats. I remind myself that often the best way to solve a problem is to approach it as a turtle, especially when it comes to figuring out the plot in the novel that is bedeviling me at present. Or managing yet another digital ulcer. Turtles have become my go-to metaphor for resisting social and cultural pressure to always be doing, busy, rushing, as a measure of self-worth and accomplishment.

Biles astounds us with her superhuman athleticism, but she became a GOAT (greatest of all time) gymnast by taking her time to get there, including her difficult and courageous decision three years ago to drop out of the Tokyo Olympics when she knew she needed to stop. She draws on her own mental health struggles and early years in foster care to promote the non-profit Friends of the Children, which supports mentors of foster children and other kids at-risk, at an annual international gymnastics invitational in Houston. Sales of a toy mascot help to raise money for the non-profit.

It is, of course, a turtle.

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, Touch Tagged With: anxiety, body-mind balance, managing chronic disease, mindfulness, resilience, stress

Sew It Goes

Evelyn Herwitz · July 9, 2024 · Leave a Comment

I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, mindfulness, resilience, sewing, stress

The More Things Change

Evelyn Herwitz · June 18, 2024 · 6 Comments

Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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, Taste Tagged With: resilience, stress, 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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