Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

anxiety

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.

What I Have in Common with Simone Biles

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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.

Dancing Ants

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As I write on Monday afternoon, my Pandora feed is playing Brahms’s Hungarian Dance Number 5. It’s short, energetic, and an old favorite, a good mid-afternoon pick-me-up.

Whenever I hear this particular piece, it reminds me of a game I used to play with my sister. Somehow, in my childhood imagination, I invented a character named Clancy the Ant. I would jump out of the closet in our bedroom and sing nonsense syllables to Hungarian Dance Number 5, cross my arms and kick my legs like a Russian folk dancer, then voice Clancy’s enthusiastic chants of hey-hey-hey to the music, going on and on long after the piece had supposedly ended. While it loses something in the telling, this performance would inevitably cause my sister to laugh, which was the whole point.

Why an ant? I have no idea. Why Clancy? No clue, either, about that or the Russian folk dancing. As for why Brahms, I can only say that classical music was always playing in our home. Our dad had a huge collection of vinyl records, and our parents had also gifted the two of us a small, electronic turntable in a little red carrying case. We had our own set of yellow vinyl 45s of short classical pieces for children. I don’t recall if the Hungarian Dance Number 5 was one of them. I do recall listening to Debussy’s Golliwogs Cakewalk on one of those yellow records—a wonderful, playful piece. My love of classical music was undoubtedly inspired by immersion in that milieu of beautiful sound.

Perhaps that was also the beginning of my desire to act. Tonight in my acting class, we have to present a monologue. Fortunately, we don’t need to memorize it—my one big worry, another hurdle to overcome. Performing in front of the group is not an issue, however. Last week I did a cold read of a monologue provided by our teacher and was amazed that I wasn’t scared at all. This time, I’m planning to perform a monologue from my yet-to-be-published World War I novel. As I wrote a few weeks ago, my goal in taking this class is to learn how to sink more deeply into my characters. So, here I go, and maybe, just maybe, I’ll stir the universe enough to attract an agent or even a publisher, at long last.

No ants, but certainly upping the ante.

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: Mike Haupt

Act One

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Another Nor’easter on the way in Massachusetts, with up to a foot of snow expected here by the end of Tuesday. As long as we retain power, I’m not concerned. I just wish it would come on a different weekday. Twice we’ve had heavy snowfall on a Tuesday, which means I can’t go to my acting class in the evening.

Yes, I have started taking acting lessons this winter. I had been thinking about this for at least a year. There is a conservatory associated with a local theater in our city, and they offer all kinds of lessons in the performing arts for children, teens, and adults. Why acting? My main motivation is a desire to be able to sink more deeply into the characters I create for my fiction. Acting lessons seem like a fruitful way to get there. But I also have long wondered what it would be like to act in a play as an adult.

The last time I was on stage was in the sixth grade. Our elementary school principal set a high standard for the annual spring festival. Performances included versions of Mozart’s The Magic Flute, Gilbert and Sullivan’s The Mikado, and Puccini’s Gianni Schicchi. The dialogue of these operas was both spoken and sung, all in English, and plots simplified. Parts were reserved for the fifth and sixth graders, and my older sister starred in both The Magic Flute and The Mikado. Costumes were designed for these two productions by our principal’s friends in the New York City theater world, and they were spectacular.

By the time I was in sixth grade, budget constraints had put the kibosh on those wonderful garments, and moms were assigned the role of seamstresses. The production that year was Prokofiev’s The Love for Three Oranges. I landed the role of the evil Princess Clarice, who plots to kill the prince so she can succeed him on the throne. The one line that I recall singing was, “Poison, or a bullet!” My sister coached me in a dramatic delivery.

In high school, I was never able to get a part in any of the school plays. The drama kids were a tight clique, and I did not fit in. So I gave up.

Until now.

I’m in no hurry to act on a stage, but I am gaining courage from the two classes we’ve had so far, to play “acting games” with and in front of my classmates. There are eight of us, four men and four women, plus our talented instructor. I’m the oldest, and the youngest is probably in his mid- to late-twenties. Two of the guys have acted in community theater and want to get training that they’ve never received. The rest of us are all newbies, pushing out of our comfort zones. Everyone is enthusiastic and has a great sense of humor.

The games vary from “Two Truths and Lie” to more complicated assignments. At our first class, for example, one person came to the center of the studio and sang a song, to be replaced by two other people who improvised a scene based on that song, to be replaced by another person who sang a song based on that scene, and so on, until we got back to the original song. It was hilarious.

We’ll continue with these games for a few more weeks, and then we’ll each learn a one-to-two-minute monologue of our own choosing, with coaching from our instructor. The class goes through the middle of May.

I have left both classes feeling totally energized, my brain swirling with ideas. I’ve also surprised myself that I have not felt too self-conscious or hesitant to put myself out there. This has been revelatory for someone who has long been more of an introvert. For many years, having scleroderma also caused me to be more sensitive about drawing attention. That, I am glad to report, has eased considerably, especially in the 12 years that I have been writing this blog.

As for an impact on my fiction writing, that will be a longer process. But in the meantime, classes are a hoot, a boost, and a reminder that you’re never too old to try something new—or something you wish you’d always done.

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: Gwen King