Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

exercise

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

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.

Fuzzy Thinking

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So, this just happened. I got a text message, supposedly from Nikki Haley, who, in case you’re not into U.S. politics, is running for the GOP nomination for president: It’s Nikki Haley. Do you have a minute to talk, Erin?

I promptly typed STOP and blocked the phone number.

Honestly, who thinks up these marketing campaigns? I have no desire to speak with Nikki Haley or any of her surrogates, if that is, indeed, who contacted me. Nor will I speak with anyone who thinks my name is Erin. Nor do I have a minute to waste on this distraction. The only plus: it gave me the opening for this blog post.

Which is about the multiple ways that we are pushed and pulled in so many directions that it’s hard to focus on anything substantive. Which is exacerbating what I’m finding more and more frustrating: the fact that my memory and attention, while still quite good, are just not as sharp as they were for most of my life.

Some of this is aging. I commiserate with my peers about the inevitable experience of walking into a room only to totally forget why I went there. Word finding, especially when I am stressed, is like tugging on a rusty file cabinet drawer. When I get blocked like this, I end up relying on words like “thingy” to express myself. Then there’s the aggravation of having two ideas in my head, writing one down, and in the process, forgetting the second idea until I sit back and let my mind settle.

Some of this is also about too much multi-tasking and interruptions and distractions and beeping and dinging computers, phones, and what-have-you. Tech gadgets certainly make life easier. I can’t imagine going back to using a typewriter, not only to avoid the wear and tear on my hands, but also because writing on a computer is just so much more intuitive and seamless. I value my iPhone, a portal to the world. But of course, that’s just the problem. There’s too much going on all the time that pulls me from what’s really important and requires concentration. It’s also a great magnet for procrastination.

So, aging and too many distractions are certainly contributing factors. But some of what I’m experiencing is brain fog that is associated with scleroderma. I had a conversation about this with my Boston Medical rheumatologist a couple of weeks ago. While scleroderma, thank goodness, is not associated with brain damage as are some other autoimmune diseases, like lupus, not much is known about what happens to people who have had scleroderma for decades, like me.

The way he put it was that people are living longer with scleroderma than in the past, but there have been no rigorous studies about how the disease affects the brains of those of us who have been dealing with this for decades. It’s possible that there is some impact on blood flow to the brain.

I found one study from 2021 that associated mild cognitive impairment (MCI) with systemic sclerosis (SSc), but the most relevant predictive factors were lower education, poor nutrition, and high ANA positivity. There are other studies that point to some mild decline in cognitive functioning in people with SSc. But I have yet to see any focus on long-termers like myself.

I was originally diagnosed with SSc, but am now catergorized as having localized scleroderma (LoS). Given some internal organ involvement, I’m probably somewhere on the continuum between the two. Regardless, something is going on. Maybe brain haze is a more accurate description than brain fog. My thought process is not blinded by fog; rather, it just feels fuzzier somehow. And because I’m very aware of it, it infuriates me, which doesn’t help, either.

What to do? The best way to deal with this, my rheumatologist agreed, is by doing the obvious: get enough sleep, eat properly, and exercise. With the arrival of colder weather, I’m falling short on the latter, which I know really does help to clear my head. So I need to get out there and walk, even if it’s chilly.

What else? Ignore ridiculous text messages from Nikki Haley.

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: Mathieu Odin

Greening

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At long last, it finally feels like spring here in Central Massachusetts. Over the weekend, the sun came out, the temperature climbed to 70°F, and all the trees that had been waiting for the signal unfurled their leaves.

We are once again surrounded by green. And so, Al and I went for a hike on Sunday. He took me to a beautiful forested park with trails around a cascading stream. I hope these photos give you the aahhh sensation I felt while hiking. 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.

Moonstruck

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I’ve had an Apple watch for a while, now. I made the investment originally because it includes an ECG app, which has come in quite handy numerous times over the past year-plus, as I’ve been trying to understand my arrhythmia and related issues that finally led to a diagnosis of Type II stress-induced pulmonary hypertension. It helps to rule out atrial fibrillation and provides useful data for my cardiologist.

My watch is useful, too, for tracking exercise, and keeping me aware of when I’m getting too sedentary. As I exercise, I can monitor my heart rate, which is important feedback for me as well as for both my cardiologist and pulmonologist, who have given me some guidelines for my ideal range.

All of this is good and valuable for my health. But here’s the fun part: the watch face. You can choose from a variety of styles, and my latest favorite tracks the phases of the moon throughout the month. I’ve paired this with the Hebrew calendar, which is tied to the lunar cycle, and am now more aware of why Jewish holidays arrive when they do.

The neatest part (I really do geek out on this stuff) is that the moon image on the watch changes phases with each day. As I write on Monday afternoon, it is four days before the full moon, and so the moon on my watch is waxing, with just a sliver of dark along the left edge. So, of course, now I’m comparing it to the moon in the night sky. The image on my wrist is remarkably accurate.

I’ve always found the moon to be a comfort. On a clear December night, it gleams like a diamond on black velvet. Illumined by the hidden sun, it still seems to glow from within, radiating calm. However far I travel from home, it’s right there, guarding the night. Even as it reveals itself and recedes from view over a month’s course, it is ever present, repeating its game of hide and seek over and over, throughout millennia.

So, now I carry the moon on my wrist, a reminder of the constancy of change, my own little oasis of calm in the night.

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: Mason Kimbarovsky