Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

The More Things Change

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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.

Reverse Engineering

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Habits are comforting. You do something a certain way, every time, that works. No surprises. You know what to do and, for the most part, how it will turn out.

This is especially true for me when I take my walks around the neighborhood. I have a certain route that I always follow, always facing traffic, always past the same houses. It’s never boring, because I always notice new details that vary with the weather and season.

But sometimes, it’s good to shake things up. On Monday, I set out on a beautiful sunny afternoon, taking a break after lunch and before my next Zoom call, up the street per usual. Except there was a big truck at the top of the street and bunch of landscapers swooshing around dirt with those obnoxious leaf blowers. Supposedly they were cleaning up, but it looked like a small dust storm.

So, I turned around and walked the other way. This turned into reverse engineering my habitual neighborhood stroll, and I realized that I was a bit confused. Even as I’ve walked this route many times, I rely on familiar visual points of reference going in only one direction as I let my mind wander. Reverse the process, and everything looks different. Where do I turn? Am I on the right street?

It was actually quite surprising. And a good way to wake up my brain.

Habits are comforting. But they’re also confining.

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: Wilhelm Gunkel

Soundscape

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As I was lying on an exam bed Monday morning, during a routine echocardiogram, I was thinking about sounds. Not just the sounds as the tech pressed the ultrasound probe to my chest and took photos—beep—typed—clackety-clunk-clackety-clackety-clunk—and played audio of my heart beat—woah-wacka-woah-wacka-woah. That alone was quite the medley.

I was also listening to the sounds of the Boston Medical office building—the whoosh of air through metal ducts in the ceiling, the padding and occasional squeak of rubber-soled shoes along the corridor, someone’s cell-phone ringing, muted conversations among the medical staff.

Medical offices have a very distinctive soundscape. Especially offices that are tied to hospitals. There is a certain muffled white noise that permeates the space, some combination of the type of linoleum and carpeting, sound-absorbing tiles on high ceilings, the cushioned shoes, the air ducts. Conversations ebb and flow around corners and through walls of exam room warrens. You can hear personal details that you shouldn’t. You can sense the tension in sotto voce murmurs.

In waiting rooms, I’ve decided there are basically two kinds of people: those who respect the presence of others and keep their voices down, and those who think they’re in their own living rooms and yell on their phones or play loud videos or music without wearing earphones. Some waiting rooms post signs that cell phones are not allowed. Some places enforce those rules. Others don’t. I have yet to determine a pattern of which kinds of doctor’s waiting rooms are more likely to be quiet or noisy. It would be an interesting subject for research.

All I know is if you dropped me blindfolded into a medical office building, I would know where I was immediately, just by the sounds. Which also means I’ve spent way too much time in medical office buildings.

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: Pawel Czerwinski

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