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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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gratitude

What We Take for Granted

Evelyn Herwitz · December 16, 2025 · Leave a Comment

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

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Filed Under: Body, Mind, Sight, Touch Tagged With: gratitude, mindfulness, resilience

Hats Off

Evelyn Herwitz · November 8, 2022 · 2 Comments

It’s Election Day here in the U.S. I write this with some trepidation. There is so much misinformation, so much distrust, so much othering of each other. It is also an extremely important Midterm election, with a lot at stake.

But I’m not going to dive down that dark rabbit hole, where I’ve been spending all too much time of late. Instead, I want to express my gratitude to all of the citizens around this country who, despite some significant risks to their personal safety (a tragic and pathetic reality), are staffing election sites today. I have several friends here who are poll workers. They do an incredible public service.

From them, I’ve learned about the meticulous process of counting ballots, recording that data, sorting ballots by ward and precinct, and securely delivering the ballots to the City Clerk’s office. It’s a long, rigorous endeavor that takes many, many hours. To these civic-minded volunteers, I say a heartfelt thank you.

We have a lot to be grateful for in this country. It’s up to each and every one of us to make sure we participate by voting—and by respecting the election volunteers who give of their time and effort to ensure a fair and accurate count of those votes. Without their commitment, especially in times like these, we would be in dire straits, indeed.

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: Elliott Stallion

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: gratitude, mindfulness, resilience

What I’m Grateful For

Evelyn Herwitz · November 23, 2021 · 2 Comments

What a difference a year can make. Last Thanksgiving, our younger daughter couldn’t come home from Philly because of Covid risks. We had a small celebration with our eldest, who lives only an hour away. But the holiday was overshadowed by all the uncertainty and infections and deaths wrought by the pandemic.

This year, we’re looking forward to all four of us being together on Thursday and to seeing extended family over the weekend. We’re all vaccinated and boosted, so I’m much more relaxed about it than I was last November.

So, of all that I’m grateful for this holiday—our family, dear friends, a nice home in a peaceful neighborhood, a supportive community, the ability to work for myself and pursue my own writing, relative good health despite scleroderma, and more—the thing I am most grateful for this Thanksgiving is the Covid vaccine.

It is an absolute miracle. It is worth the temporary side effects. It prevents serious illness. It saves lives. It has protected me for many months, now. I fear how I would have fared during the Delta wave this summer without it. As cases again surge in Europe and here in the U.S., primarily among those who are not vaccinated as colder weather drives us indoors, I profoundly hope that more people will realize the incredible gift of this scientifically sound and safe vaccine, and get protection for themselves and others around them.

This is my 500th post on Living with Scleroderma. I could never have imagined, when I started this blog on January 3, 2012, that I would be writing about surviving a global pandemic nearly ten years later. Just typing that sentence is mind-boggling. We can never know what is coming next. My hope for you, Dear Reader, is that you make the most of each and every day, whatever it brings—and bring your best to it. That’s really all that any of us can ever hope to do.

Be well, and happy Thanksgiving to all who celebrate.

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: Eric Tompkins

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, gratitude, managing chronic disease, mindfulness, resilience

Grateful

Evelyn Herwitz · January 1, 2013 · 16 Comments

One year ago, on New Year’s Day, I was sitting with friends in their cabin out in Western Massachusetts, talking about the idea for this blog.

Writers are always advised, “Write what you know.” Well, with three decades’ experience, I certainly know about scleroderma. For several months, I’d toyed with the notion of writing about this disease, possibly as a freelance project. Those plans didn’t materialize, but the idea lingered.

Even still, I was unsure about going public online. It was scary. For many years, I’ve remained mostly silent about having scleroderma, sharing only with Al, our daughters and a few close friends. The disease is relatively rare, hard to explain, and just plain strange. I’ve had trouble accepting my health challenges, even as I’ve lived with the daily consequences for so long. Like everyone else, I just want to be healthy.

But, reality is, I have this disease and a gift for words.

So, with encouragement from friends and family, I decided to go ahead and blog about what it’s like to live, day in and day out, with this most complex and mysterious illness.

I didn’t want this blog to be a harangue about my travails, or a litany of symptoms and doctor’s appointments. Rather, my goal was to explore the experience of living with a chronic illness, how it shapes your daily life and relationships, as well as how you perceive yourself.

It’s been quite a journey, writing every week. I’ve become more comfortable and confident, sharing with all of you, my loyal subscribers and readers, what it’s like to live with scleroderma. I’m no longer embarrassed when a stranger asks about my hands. I’ve found greater self-acceptance.

I’ve also been deeply moved when readers have shared their thoughts and taken inspiration from my words. And I’m so appreciative of both the Scleroderma Foundation and the Scleroderma Research Foundation, for their wonderful work toward finding a cure, and for their encouragement and help in sharing some of the content of this blog.

Some of you have asked if I will turn this blog into a book. My answer: I’m working on it. Will let you know as I explore concepts, formats and options. Meanwhile, I plan to keep posting for another year, and see where it leads.

To all of you, my profound thanks for reading, commenting and sharing this blog. Most of all, for caring. My best wishes for a healthy, healing, prosperous and peaceful 2013.

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.

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Filed Under: Mind Tagged With: gratitude

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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