Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Something Completely Different

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The sun is bright overhead as I write on Monday afternoon, a few hours before the solar eclipse is set to begin here in Central Massachusetts. We’re expecting that the moon will block about 90 percent of the sun at 3:28 p.m. I have my two pieces of cardboard to create a camera obscura, a pinhole in one piece through which I can project the eclipse’s image onto the other, so as not to fry my retinas.

On a day of a rare celestial phenomenon, it seems all the more appropriate to break from my routine here and share some good news that has nothing to do with scleroderma. I’ve occasionally menioned on this blog about writing my yet-to-be-published work of historical fiction, Line of Flight, set during the First World War. It’s the story of a mother’s journey to find her estranged daughter, who has run off to France with her beau to volunteer for the French ambulance corps. The good news: within the past few weeks, two excerpts from Line of Flight have published on two separate online literary journals.

And so, in an act of shameless self-promotion—and if you’d like to read something that will take your mind off this nasty disease and related medical concerns, or any other stress in your life—I share a few links:

  • The opening of Line of Flight appears in the April 2024 edition of Embark, which presents openings of ten unpublished novels, twice a year. This happens to be their 20th issue, and I’m in good company. You can read my novel’s opening here.
  • A chapter called “The Sinking” is in the spring 2024 edition of The Writing Disorder, an aptly named literary journal for those of us afflicted by this form of art. The action takes place on the fated last voyage of the Lusitania on May 7, 1915. Read it here.
  • I’ve started a Substack newsletter, History Making, that digs into lessons learned from researching and writing historical fiction, as well as other works of historical fiction that I admire, the long and winding road to publication, and related topics. I’m publishing a post twice a month, and subscriptions are free. So, if you’re curious about the writer’s life and this genre of fiction, you can find it all here.

I said none of this has anything to do with my scleroderma—but that’s actually not quite true. When I was growing up, my hands were extremely dexterous. I could make any kind of art or craft, and I played numerous musical instruments. Once, when I was perhaps ten years old, I recall lying in bed and thinking about what it would be like to lose one of my senses. I decided I would never want to lose the touch of my gifted hands.

That was not to be. But I have realized over the decades of dealing with this disease that writing is my art form, my way of creating images and making music. It took me eight years and twelve drafts to get my manuscript to the point where I feel ready to seek publication. And I’ve been seeking an agent and/or publisher for the past two. That involves a lot of patience and persistence and a refusal to give up—all skills I’ve honed through living with scleroderma.

So, getting this far with my novel is a major milestone, indirectly inspired by managing a complex and chronic disease. And, with any luck, my manuscript will get into an enthusiastic publisher’s hands sooner than the next total eclipse of the sun.

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: Jongsun Lee

This Bud’s for You

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Spring teased on Monday, with temperatures hovering in the mid-50s, a great break from more frigid weather last week. It never ceases to amaze me how our trees and shrubs withstand all this winter yo-yoing, made all the more intense as climate patterns shift in response to global warming. Too cold? Too warm? They adapt. At least, so far. Certainly better than I do.

I took a break from client projects Monday afternoon to take a few photos of the stalwart buds on our new cherry tree out front and more buds on the overgrown azaleas—or are they rhododendrons?—by our back door, and to admire tiny plants peeking out of the moss in our rock garden. Their resilience always gives me hope.

Daylight Savings Time starts this weekend. Spring is but a few weeks away. Here’s a little taste of seasonal rejuvenation to savor during this first week of March in the Northern Hemisphere. 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.

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

Small Blessings

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Another snowy morning here in Central Massachusetts. It’s seasonably cold, and I’d like to stay inside, but I need to get out and run some errands and get my car inspected before the end of January. Why do I always leave this until the last minute? I don’t know. But at least I won’t forget this year and get a ticket, as has happened in the past.

I can feel the winter doldrums settling in, when a snowfall becomes a chore rather than a natural wonder, and layering up to go outside feels like transforming into a mummy. My keyboard space bar is sticking because a crumb got under it (I know, I shouldn’t eat pretzels when I type), which requires extra key strokes and pressure on my right thumb. My eyes are even more dry than normal because I need to keep the house warm. There’s a squirrel that keeps feasting at our bird feeder, which we had to move to our deck because a previous snowstorm snapped the pole it was hanging from.

I could go on with all these gripes. But it just skews my focus and makes me grouchy. So, better to remind myself of all the small blessings that too often go unnoticed. Here’s a start:

  • When I go out to get my car inspected, the air will be moist because of the snow, and my eyes will feel better.
  • I will be able to get my car inspected because Al shoveled the drive this morning, despite the snow being wet and heavy. (He likes the exercise, definitely a shovel-purist.)
  • My home is warm and my dear husband never complains about the electric bill.
  • The snowfall was quite lovely, and it’s good for the water table level as well as the new clover lawn we had planted in the fall. I’m looking forward to seeing how it emerges in a few months.
  • The squirrel that considers our bird feeder its private café is quite an acrobat, doesn’t really eat all that much, and provides great entertainment while I eat breakfast.

There. I feel better already.

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.

Home Improvements

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At long last, our kitchen ceiling is being repainted. This after, at long last, having the recesses of our two kitchen skylights repaired, a few years after the skylights and kitchen roof were replaced, after years of dealing with leaky skylights.

As you may correctly surmise, neither Al nor I are pros at home improvements. Al, by his own admission, is not Mr. Fix-It. I can see what needs to be done and how to do it, having learned from years of watching my dad fix just about anything. But I can’t physically do what needs to be done, because of my hands.

This is a source of endless frustration.

Years ago, when Al and I married and bought our first home, we worked side-by-side painting ceilings and window trim. Despite a few paint sprinkles on my glasses, I was able to adeptly use both roller and brush. Al did a great job wallpapering every room. I sewed drapes. This was before my scleroderma advanced to the point of really damaging my fingers.

Today, the idea of picking up a paintbrush or roller is a non-starter. I wish I could build things like my dad did, but wielding a hammer, even just to nail a picture hook, is a real challenge. I can still make things that are small or soft—sewing remains a favorite hobby, as long as I pace myself over weeks and even months. But no projects that are heavy, sharp or cumbersome.

So, instead, I have become adept at screening painters, carpenters, roofers, and other home improvement experts, to find the best work for the best price. If you can’t do, delegate. That’s the second rule of management.

The first one: know what you can’t do, and get over yourself. Easier said than 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.