Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

What We Take for Granted

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Early Monday morning I was awakened by what I thought, in my half-dream state, were raccoons or some other large critters running around on our roof and climbing in the gutters. Then I heard voices outside. I roused myself to look out the front window and discovered a row of city public works trucks outside, yellow lights blinking, and a backhoe with some kind of drill punching holes in the pavement in front of our neighbor’s driveway. Each punch made our house tremble.

Some mighty big raccoons!

The trucks were still there when the sun rose. Turns out a water main on our street had cracked open in this very frigid weather we’re enduring. So, no water for morning ablutions or anything else. Fortunately, Al had left a large plastic pitcher of water on the kitchen counter the night before, so I could use some to remove my bandages and wash my hands before re-dressing them, as well as water to rinse my eyelids, essential for my cleansing ritual for very dry eyes.

Within a few hours, a new pipe was installed and the crew began refilling the large open pit on the street. I went outside to thank them, because I’d learned from one of our neighbors that they’d been there all night. Not enough workers available to cover in shifts (another main had broken on a nearby thoroughfare the same night). The man I spoke with was very polite and informative, and he said our water would be back on soon.

Sure enough, within the hour, it flowed—gritty, at first, with a burst of trapped air, but running clear soon after.

The whole experience really struck me. It’s bad enough when power goes out in a storm. But losing water is truly disruptive. We’re so used to easy access. Just turn on the tap and fill your cup, wash the dishes, brush your teeth. Flush the toilet and, poof, your poop is gone.

It’s easy to criticize the city for a broken water main, for old infrastructure that hasn’t been updated, for all the inconvenience and disruption. But I am truly grateful to these guys for coming to our rescue in the middle of the night and staying the course in bitter cold to restore this most basic of needs. When I thanked the crew leader, he said, “It means a lot to hear that.” Another neighbor ran out and brought the crew a dozen doughnuts.

For all the disparaging remarks in casual chatter, on social media and elsewhere about government workers being lazy, corrupt, or otherwise deplorable, most are honest, hard working, and devoted to their jobs of making our lives easier. They truly deserve our respect and thanks.

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: Joshua Junior

Self Pep Talk

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It’s only December and it feels like January here in Massachusetts. Rolling up in a ball and hibernating sounds enticing. It’s hard to get myself out of the house, let alone out of bed in the morning. When I sit too long at my computer, I stiffen and need to rouse myself.

But I know that if I don’t get up and out, I’ll feel even worse. Moving is what keeps me moving, getting blood circulating in my brain and into my fingers and toes.

So, I kept a commitment on Friday morning, even as it was only single digits outside, to go with a friend to a special awards luncheon an hour’s drive from here for a project we’d worked on for our fair city. It was uplifting and fun and just an all-around good experience. On Saturday, I made myself walk, bundled up, to synagogue, and then later spent a pleasant afternoon studying texts with two good friends.

Then on Sunday, Al and I went to Hartford, Conn., to celebrate our 41st anniversary (which is actually today). Why Hartford, you ask, when Boston, with all of its cultural attractions, is just an hour away? Because there is a wonderful art museum there, the Wadsworth Atheneum. We also took in a ballet performance of The Enchanted Toy Shop by a local conservatory and had a really nice Italian dinner after. None of which cost anywhere near what Boston costs, and the street parking on weekends is free.

And, despite 21 degrees outside as I write on Monday afternoon, I’m about to head out to Pilates and to do some errands. And I have my acting class tonight at our local conservatory.

All of this reminds me, even as my instinct is just to burrow under the covers, that I really do better when I stay active—mentally, emotionally, spiritually. Being physical is a real challenge this time of year, but the more I move and keep stimulating my brain, the more those physical challenges seem manageable. As I keep telling myself.

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: Lydia Reclining on a Divan, c. 1882, possibly by Mary Cassatt, Wadsworth Atheneum

Why Me?

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For all of the bad things that happened during the COVID pandemic, the one good thing that happened for me was reconnecting with old friends over Zoom. Five years ago, when we were hunkered down, I looked up friends from my teens and twenties and caught up online.

Some of us have continued those conversations, maybe once or twice a year. And this past Sunday, a bunch of old friends from my high school days shared our lives for a couple of hours. It was funny and poignant and an important touchstone for all of us, to recall where we came from and where we’ve ended up.

One of my friends, whom I haven’t seen in fifty years, shared that her sister had also had scleroderma. She died several years ago from a brain tumor, but lived with significant skin tightening for about 15 years. A number of years ago, I had also learned that the older sister of another classmate had died from very aggressive scleroderma. What are the odds that three women from the same small high school all got this rarest of diseases?

My friend on the call Sunday has wondered if the fact that our school was not far from a nuclear power plant might account for her sister’s illness and other rare autoimmune diseases that run in her family. I have wondered if the two years I spent in graduate school in Pittsburgh, living in a neighborhood on a hillside above the Jones & Laughlin Steel mill, which flushed its stacks every weekend, filling the air with the thick odor of rotten eggs, may have played a role in my disease trajectory.

Researchers still don’t know exactly what causes scleroderma, this formidable autoimmune disease that tricks the body into producing too much collagen that tightens and hardens skin and connective tissue. My rheumatologist at Boston Medical has told me the latest theories point to some kind of virus that triggers the disease process in people with certain genetic predispositions. It is not contagious, and very rare for direct family members to share the disease.

Stress also plays a role in disease onset. Research supports this, although other factors—genetic, hormonal, environmental, and immune system health—are all part of the mix. In my own case, I developed symptoms (puffy fingers, migrating arthralgia, gut issues, fatigue) in my late twenties after my first marriage ended in divorce. I was anxious and running on adrenaline while coming to terms with it all (not to mention the stress of the marriage itself, which was considerable). All that adrenaline flooded my body with cortisol—which at too high levels can damage the body’s immune system.

So, whatever else I was exposed to and whatever my particular genetic mix, that probably set the stage for my getting scleroderma.

If there’s one thing I’ve learned from all of this, it’s to take stress seriously and to do my best not to let it overwhelm me (not always successfully in our tumultuous times). Meditation helps. So does exercise (Pilates, walks, stretching). So does surrounding myself with nature and art and music. Loving family and friends are essential supports.

Recently I was listening to a meditation app that mentioned a Korean custom to eat only until you’re 80 percent full. The idea is to not overdo, to leave room to appreciate what you’ve enjoyed. It provides a good metaphor for living, as well—to engage fully, but not to the point that you deplete your energy (or run your health into the ground). Keep that 20 percent reserve for resting, recuperating, and recharging.

I’ve been thinking about this a lot, lately. I hope it’s a useful concept for you, as well, Dear Reader, especially right now. Take care.

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: engin akyurt

Open Air Cathedral

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Beautiful, crisp fall weather this weekend beckoned for a walk. Our trees here in Central Massachusetts have carpeted lawns and streets with leaves, but there is still much beautiful foliage to enjoy. So I set out on Saturday afternoon to stroll through a historic cemetery in our fair city.

Why a cemetery, you ask? Because this one, Rural Cemetery, was first created in the 1830’s during the eponymous 19th century movement to create “open air cathedrals” for burying the dead, as opposed to cramped burial sites that dominated urban centers. Aside from the aesthetics, these park-like cemeteries limited the risk of ground-water contamination from decaying bodies. And so, our Rural Cemetery is an arboretum with some very old and magnificent trees.

The cemetery is also the resting place from some famous local citizens, whose names define many streets and landmarks here. Being a local history nerd, I find it fascinating to discover them, as well as to observe the art of gravestones from earlier times and how it reflects social attitudes and values about that most mysterious aspect of life—what comes next.

I hope you enjoy this stroll with me. . . .

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.

What Happened to Your Hands?

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Recently, a young boy was studying my fingers. “Why do you have so many bandages?” he asked.

“I have problems with my hands,” I answered. For a pre-schooler, that seemed the appropriate explanation.

He looked concerned, or perhaps afraid. “You don’t have fingernails,” he said.

“No, I don’t,” I said. Not exactly true. I have a few left, but they certainly don’t look normal, more like moon crescents. He seemed perplexed, but then he got distracted and that was the end of our conversation.

A friend who overheard our chat checked to see how I took it. “Kids say what everyone else is thinking,” I said. “He’s just curious.”

It really doesn’t bother me anymore when people ask, after all these decades of living with odd-looking hands and way too many digital ulcers, especially since my hand surgery eight years ago that necessitated some partial finger amputations. Most people who know me don’t pay any attention to my hands. When a stranger (often a cashier or someone else I’m handing something to) asks, Oh, what happened to you? or clucks about my bandages, I just take it as a mix of natural inquisitiveness and compassion.

My standard answer is something like, “I have chronic ulcers.” I don’t bother to go into an explanation of scleroderma, because the occasion doesn’t call for a lengthy discussion, and I’d rather keep it simple. Sometimes the person will ask a follow-up, Does it hurt? To which I say, “Sometimes.”

I realize that such inquiries can be much more challenging for those with severely tightened skin. Before my skin relaxed somewhat on my face, hands, and forearms (a miracle, truly, as it was beginning to get uncomfortable to blink in the early years, and the skin on my hands was like leather), people who knew me casually would ask with concern whether I’d lost weight. They sensed something was different, but couldn’t figure out what.

I was very self-conscious during that first decade. When I began to see wrinkles in my forehead again after several years on penicillamine (a since-discredited treatment because research samples involved too few patients to prove a positive response, but I believe it saved my life), I was thrilled. But my hands were already deformed by then.

It wasn’t until I began writing this blog in January 2012 that I started to overcome all the embarrassment that I felt about my appearance. There really is so much more to living with a chronic, deforming disease like scleroderma than your looks or your diagnosis and treatments, although I don’t in any way mean to minimize the very real physical and emotional pain and stress of literally being trapped in your own skin, when scleroderma takes its most virulent form.

What I have learned in my nearly 45 years of managing this disease is that people take their cues from you. The more accepting you are of yourself, the more accepting they are of you. It’s a journey. I’m grateful to be sharing it with you.

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: Alex Skobe