Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

On Getting Older

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In just over a month, I will turn 70. That number doesn’t feel so old to me anymore. In fact, it feels about right.

There’s an old saying that you’re as young as you feel. Can’t say I feel young—at least, not physically. My body has been aging prematurely since I developed scleroderma in my late twenties. In some ways, I don’t really know what it’s like to be thirty or forty, or even fifty, since I was always ahead of the aging curve. I’ve been living for decades with aches and stiffness and body parts that don’t work and a sense of physical vulnerability that normally wouldn’t arise until late middle age. I used to envy friends who were healthy and energetic when I couldn’t be. I wondered what that would feel like.

Not anymore. Everyone’s caught up. Meanwhile, my decades of experience with premature aging have made the onset of the normal range of physical limitation that come with this time of life just another blip. Aches and pains when I wake up or rise after sitting for a while. Check. Need to manage my energy. Check. Lots of specialists appointments. Check. Need to manage multiple meds. Check. Harder to walk than before. Check. Eyes too dry and tire more easily. Check. Hands giving me problems, hips, feet, knees. Check, check, check, check.

It adds up, and I certainly understand how distressing it is when all this starts to happen, whatever your age. But I never expected scleroderma to give me an advantage. It has forced me to learn how to pay attention to what ails me, problem solve, adapt, get proper medical attention, manage my health care, and most importantly, focus on what I can do rather than on what I can’t. After forty-plus years of living with it all, turning 70 doesn’t really seem like a big deal.

In fact, it feels like an accomplishment. And I’m looking forward to 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.

Image: Volodymyr Hryshchenko

 

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.

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