Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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.

Bounce-back

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As I write on Monday afternoon, the shadows of our yews dance on the window blinds of my home office. It’s a marvel, how they’ve bounced back—literally—from last week’s heavy, wet snow. Seven days ago, their evergreen boughs bowed low. Today, they reach again to the sun, trembling in a light breeze.

It’s cold outside, in the teens when I woke up this morning. Not as cold as one friend reports on FaceBook from her home in Montana, where Arctic temperatures hover well below zero. That, I could not tolerate, literally. This cold blast I can live with, at least temporarily. And there is my annual source of relief in mid-January: daylight is already becoming noticeably longer.

Often, these days, I think about how the only thing that is real is what is happening right now, in the moment. One day, we were digging out from more than a foot of snow. A few days later, the sun is bright and our hardy New England evergreens have recovered. A lesson in resilience.

Yews have evolved over millennia to grow springy boughs that aren’t broken by heavy snow. For us humans, resilience must be learned. Whether in response to chronic disease or dark news or whatever else is weighing on our hearts, resilience requires cultivation, attentiveness, experience. It takes practice. It takes patience. It takes living in the present and maintaining a long perspective.

But it is not a passive posture. If there is anything I’ve learned from living with scleroderma for more than 40 years, it’s that resilience also requires a willingness to face the present with a clear understanding of what is happening, what’s at stake, and how best to respond. For me, resilience is also a matter of faith and of trusting my intuition when facts and answers are murky.

That is not to say that I always feel resilient. I have to work at it, every day. There is much in this world that weighs heavily on my heart. All the more reason to sit back at my desk and study the pattern of dancing yew boughs on my window blinds on a cold and sunny Monday afternoon.

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.

Snow Day

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On Sunday we had our first big snow of the season, 15.5 inches, officially. Thankfully, the power stayed on despite the heavy, wet snow, although the pole that holds our bird feeder snapped under the weight. Al shoveled our drive and walkway three times, more than earning a good night’s sleep. I clomped through deep snow in our backyard to rescue the feeder and hang it by the back deck, so the birds could still find some food in the storm. Inside, our home stayed warm and cozy, as the world around us slowed down.

I always love this kind of snow, early in winter, before it turns grubby and sloppy and monotonous. The transformation is stunning. Snow outlines lacy tree branches, drags down evergreen boughs, and covers roofs like thick layers of buttercream frosting. Side roads stay white, even after plowing, with high borders lining both sides. Only a few cars venture out, and no planes drone overhead. Quiet reigns.

On Monday afternoon, I bundled up in a long sweater under my down coat, snow boots, wool hat, warm mittens, and sunglasses, and set out to see how the neighborhood had changed.

School was canceled to give the city time to clean up after the weekend storm, but I only saw one dad pulling two of his kids on a red plastic sled, while the other two walked alongside. One of the kids on the sled, his cheeks bright pink, licked a huge ball of snow. I used to love that wintry treat, too, when I his age. Also making snowmen, but so far, none to be seen.

Elsewhere, a few neighbors were shoveling their drives or brushing off cars. Most folks had, like Al, done the main clearing on Sunday. You could tell who had snow blowers by the wide paths along sidewalks that were already melted down to pavement. An icicle shattered on someone’s front steps. Dollops of snow, like whipped cream, clung to branches. Snow covered half of a neighbor’s roof, while the other half had melted to reveal an array of black solar panels.

Aside from enjoying the scenery, the best part of my walk was savoring the moist air that eased my winter-indoors-too-dry nose and eyes, and the fact that it was warm enough to walk with my mittened hands outside my pockets for the whole mile-and-a-quarter route. The air smelled fresh and clean. My head was much clearer when I got home. As I wrote this post, I could hear a red-tailed hawk calling somewhere nearby.

All of this will wash away by mid-week, in another storm, but rain this time. So, here’s to living in the present moment and enjoying all the beauty that surrounds us, each day. You only have to look to find it.

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.