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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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A Great Way to Start the Day

Evelyn Herwitz · September 2, 2025 · 2 Comments

Labor Day is past, the school year has begun, and red-orange sugar maple leaves are drifting to the ground. Here in our Fair City, it is preliminary Election Day, when we have the option to narrow the field of candidates running for at-large seats on our City Council. Fourteen citizens have thrown their hats into the ring for six seats.

I doubt if many people will take advantage of the opportunity to vote. This isn’t a flashy election, with the high stakes of the upcoming Mid-Terms next year. But it’s important. Our city is in the midst of a development boom, with affordable housing options evaporating for renters. Roads need repair and repaving. Our public schools need attention. Climate change is affecting every aspect of our lives. State funding is tight, and federal funding, even tighter now. Several times over the past year, City Council meetings have been disrupted by raucous protests over international headlines. Whom we choose to guide our city through these tumultuous times matters.

So, yesterday, on Labor Day, when I took the day off to start a new sewing project, I first drove down to City Hall and deposited my mail-in ballot to the drop-box outside the back entrance. I would have mailed it, but I missed the deadline and wanted to be sure it was received by close of business today.

It took me a while to complete the ballot. I didn’t know a lot about some of the new candidates, so I read through a series of profiles on our local newspaper’s website. Honestly, it was impressive. I find it very moving, when so much seems so dark these days, that idealistic citizens still want to serve our city. The role of City Councilor is not easy. The issues are complex, people are demanding and often not forgiving of human foibles, and the hours are long, for a nominal salary. Everyone on the Council has a full-time job elsewhere.

Perhaps it would have been just as simple to vote in-person at our local polling place today. But I like the convenience of the mail-in ballot, to be able to vote on my own schedule. There is nothing complex or mysterious or fraudulent, as some claim, about the process. We use paper ballots, whether in person or mail-in. The only difference is how the ballot is collected.

Throughout election season here, yards are dotted with candidate signs. Already I’ve seen candidates standing at major traffic intersections, holding up posters and waving to passing cars. Our mailbox has been stuffed with oversized postcards, touting candidate qualifications. We’ve answered the doorbell several times to people canvassing for their person. It’s a local tradition, this old-fashioned, down-to-earth effort to gain name-recognition in the build-up to November 4.

On my way downtown, traffic was light. Street meters on Labor Day were free. The whole round trip, including parking and walking to the drop-box and back to my car, took no more than 20 minutes. And it gave me a boost—an excellent way to start the day.

Whenever I vote, whether in a local run-off or a national election, I always feel better afterwards. In our democracy, voting is both a right and a privilege that I never want to squander. Every vote counts, especially at the local level. If you have the option to participate in your own community today, please do.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, mindfulness, resilience

Making Waves

Evelyn Herwitz · August 26, 2025 · 4 Comments

On Sunday, Al and I went to one of our favorite places, Block Island, an hour’s ferry ride off the Rhode Island coast. We used to vacation there when our daughters were young. Unlike just about anywhere else I can think of, the island remains a time capsule. Many of the same weathered buildings line the harbor that were there on our first visit 34 years ago. Dunes shift, as they are wont to do, but nearly half the island is protected open space, which has significantly preserved its unique charm. It is a comfort, a respite, a little slice of peace.

At our favorite beach, the sand bore traces of Hurricane Erin, which passed by the island late last week. It was packed down much farther from the shoreline, evidence of a very high tide. We had seen videos of the large traditional ferry (as opposed to high speed) arriving last Wednesday evening, rocking side to side at 45 degree angles as it neared the harbor. By Sunday, there was a bit more chop for our ferry ride than usual, but nothing truly remarkable.

Surf pounded. Little kids ran up to the wash of waves, screamed, and ran back, then raced toward it again. Swimmers flung their arms in the air as they jumped over breakers. Young and old dug moats and built sand castles. Farther up the beach, dogs romped. Paddle balls pocked back and forth. We didn’t find any sea glass, a favorite quest, but I collected a handful of smooth oval rocks of various hues to bring home.

It felt like a normal, relaxing, sunny day at New England’s Atlantic coast, at the end of vacation season. Some public schools have already started, so the crowds were thinner. At colleges and universities across the country, freshman have already arrived for orientation.

Which was the case this past Thursday at Villanova University near Philadelphia, where our younger daughter works. But that first day of freshman orientation was anything but normal.

Toward the end of Thursday afternoon, Al and I were at a celebratory event at our public library, marking the success of the first anniversary of a pilot project to plant a Miyawaki Forest in what was once a section of parking lot, a project I have been very involved in. I was chatting with a student from Rutgers University who had driven up from New Jersey to learn what we had accomplished, when I received a text from our daughter at 4:41:

Mom, I’m currently okay, but I need to let you know there’s an active shooter on campus.

I handed my phone to Al. We left immediately. As soon as we got home, I searched on my computer to see if I could find out any more details. Our daughter, who was barricaded with her boss and another co-worker in the boss’s office, relayed what little information she had—that the shooter may have been at a Mass for new students, that he was now inside the law school at the other side of campus, which was surrounded by law enforcement. That no one knew if anyone had been shot.

I didn’t know what to do. It didn’t feel real. But it was. What do you do when your cherished daughter is hiding with her coworkers from a maniac with an assault rifle, and there is no way you can protect her? I stared at my computer screen. I did some mindless work, just to do something. I texted some friends. I waited for the next text from our daughter.

Then I fell back on my journalism skills and began scouring the internet for whatever I could find that might help her and her coworkers. I checked CNN. No useful information. I found a few more details at the Associated Press, a little at The New York Times. The Philadelphia Inquirer reported that paramedics had arrived, along with police from the Tri-state area. There were video clips of students fleeing, of cop cars with flashing dome lights, of armed police approaching the law school, of snipers on rooftops. There were photos of the university green where freshmen and their parents had gathered in rows of white chairs, now empty, with white programs littered about. It was surreal, and all too numbingly familiar at the same time. Then I found a live news feed from the local ABC affiliate and passed that along. And kept finding reasons to check in. She, too, kept me posted, though news was sparse. We both knew this could go on for hours. We both hoped that the gunman would be caught soon.

About an hour-and-a-half into the crisis, she sent me another text, this time an official notice from Father Peter Donohue, Villanova’s president: There was no shooter. There were no injuries. The whole episode had been a cruel hoax.

Immense relief, all around. We were all so grateful no one was hurt, at least physically. The emotional trauma, though, is real. These are students who have spent all their years in school with active shooter drills and threats. And now, this, on what should have been a triumphant day of beginnings. And to top it off, a similar hoax took place earlier that day at the University of Tennessee in Chattanooga, a second hoax was called into Villanova on Sunday (this one affected a single dorm and was debunked in 40 minutes), and also on Sunday there was a similar incident at the University of South Carolina in Columbia. What kind of person concocts such evil schemes?

Of course, in this day and age in the U.S. of A., none of it topped the headlines. No one killed. Nothing to report. We have become so inured to this insanity and so inundated with political madness that a series of active shooter hoaxes at three universities at the beginning of the academic year merits only stories buried on websites.

Our daughter finally made it home two hours later, after waiting for security to sweep their building to be sure nothing had been missed, after Father Peter gathered the community twice, first to reassure everyone there was no danger, and again to finish the final prayer of the Mass that got interrupted by the crisis. We’ve talked numerous times, since. She is doing as well as anyone could, back to work the next day. Thank God.

Which is one of the main reasons why I really needed a trip to Block Island on Sunday, with its weathered buildings, its familiar beaches, its fresh fish dinners and sweet ice cream cones. I was able to relax for the afternoon, though I found my mind sifting through what had happened. I began to formulate this blog post. I studied myriad footprints, big and little, pressed into the hard-packed sand from hurricane-driven tides, and wondered about those children, screaming in mock fear of the waves. What would become of them in their journeys through school?

I wish we really could step back into the more innocent time the island conjures. But we can’t. We are here. We live in a dangerous, violent world, at a crossroads in the history of our nation’s democracy. It feels overwhelming to me. Then I draw on my experience these past few years, helping to create a dense, small forest next to our public library that promises to be an innovate way to ease summer’s intensifying heat in congested neighborhoods with no trees.

Our community came together to plant that forest. We had no idea when we embarked on this project that it would draw so much interest and inspire students and other communities to learn more and plant more, too. It’s essential to remember—I keep reminding myself—that most people in this world are good, honest, peace-loving people who want to nurture their corner of this planet. Even the smallest act of joining together to solve one problem for the betterment of others can create ripples that grow into waves of possibilities for the greater good. Doing my best to maintain that focus, imagine what could be, and work toward it one small step at a time, rather than get mired in all the darkness, is my only way forward.

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.

 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: anxiety, resilience, stress, vacation

A Patch of Calm

Evelyn Herwitz · August 12, 2025 · Leave a Comment

I used to think that any plant I touched would surely die. But ever since I planted my bonsai, a Brazilian rain tree, four years ago, I’ve been gratified to discover that I’m actually pretty good at this.

My little tree is thriving, especially this summer. New leaves appear almost daily, requiring some careful, frequent pruning for it to retain its classical bonsai triangular shape. You’re supposed to be able to see the structure of the tree through the leaves, but I haven’t trimmed it back quite enough. That can wait until the fall.

Visiting it every morning is a pleasure, because it forces me to slow down and appreciate what has sprouted over the past 24 hours. I also love to check it in the evening, when its compound leaves fold up like a book as the sun sets. This can also happen if my bonsai is stressed from too much wind or cold, prodding me to take it inside—an ongoing conversation.

This is not to say that I haven’t lost a few plants in the meantime. Only parsley remains in a potted herb garden that was a gift a year ago, but some tiny sage leaves finally seem to be sprouting. I’m also trying to rescue some mint, another gift, which failed to thrive, though it is beginning to revive in a pot.

These days, when so much stress and angst seems unavoidable, watching Nature work its miracles is a welcome and necessary respite. Whether in a pot or a garden or a nearby park. Dear Reader, I hope you find your own green patch of calm.


P.S. Regarding the outcome of my MacGyver solution for a Pilates reformer foot-bar pad, unfortunately, the pool noodle core was too narrow, so it didn’t fit over the foot bar, but it did fit over the wooden dowel that we use for some hand work. Not a total loss. On to finding padded Pilates shoes . . .

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: nature, resilience, stress

Color Me Purple

Evelyn Herwitz · July 29, 2025 · 4 Comments

Purple is a standout color. It is the hue of royalty made from the rarest of dyes, the tint of smoldering sunsets, the shade of head-turning hydrangeas in a summer garden.

And, as of last Thursday, it’s the gorgeous color of my new dress that I finally finished sewing. As reported a few weeks ago, I had been making good progress until I messed up the neckline finish, so I put it aside for about a week to figure out the solution. The problem was the beautiful fabric, which I have had in my fabric stash for nearly 40 years. It has a very soft hand and loose weave, so it ripples and stretches and generally does not make for easy construction.

I had tried to finish the neckline with a strip of fabric cut on the bias (diagonal to the weave), which made it even stretchier. And my hands simply could not manipulate it on my sewing machine. So I ended up trimming off the mess and using a top-stitched facing (wider piece of fabric cut on the grain to encase the neckline edge) instead—easier to handle and a much neater finish.

Next step was to tackle the sleeves. Once again, the fabric was tricky to handle. When you set in a sleeve, you need to stitch a couple of rows of basting along the curved top, which enables you to gather that edge to fit the body of the garment. It took a lot of patience to spread the gathers evenly and pin them in place (without pinning them to my thumb bandages), then stitch the sleeve to the garment, and, finally, use a serger to overcast and trim the seam without accidentally cutting into the sleeve itself. I was catching my breath as I worked through that last step. But it came out fine.

The final steps were side seams, sleeve cuff finish, and a hem. I took my time with each one, and I managed not to make any big mistakes. Of course, I know where all the imperfections are in this project, but that doesn’t matter. It’s the final result that counts.

When I tried on the dress, I was really pleased. All the qualities of the fabric that made it such a challenge—the softness, breathability, drape, and yes, the color, because I used a purple thread that was so well matched that it was hard to see when I had to take out stitches for mistakes along the way—also make the dress a real pleasure to wear. It is cool and flows and feels very comfortable, a new summer staple for my wardrobe.

And it didn’t cost a cent to make. Just a boatload of patience and acknowledgement that, even if my hands can feel way too clumsy sometimes, compared to my former extremely fine motor coordination, they still serve me very well. Thank goodness.

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.

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Filed Under: Body, Mind, Sight, Touch

Sew-sew

Evelyn Herwitz · July 8, 2025 · 4 Comments

I’ve had some sewing projects in mind for months—in particular, a dress that I sewed up last summer in a test fabric that I liked so much, I’ve been wearing it on hot days. It would look lovely and feel great in a very soft purple cotton blend that I’ve had in my fabric stash for, literally, decades.

So, with my digital ulcers doing better (summer bonus), though still bandaged, on July 4th I took the afternoon to cut out the pattern pieces. (I use a rotary blade for precision and ease of handling.) In so doing, I realized this would be a tricky project, because the fabric is so soft that it slips and stretches if I’m not careful.

Yesterday it was quite hot outside, in the 90s, so I had to put on the A/C. We have heat pumps that double as air conditioners, and they blow cooled air. Very effective, but with my Sjogren’s, they also dry my eyes even more than normal. But I had the time to start sewing, and I set to work.

It took me about a half hour to thread my serger, and more time to diagnose an issue with my sewing machine, which kept jamming until I realized that the thread had jumped one of the guide loops. The first dart sewed up perfectly. The second slipped despite pinning it in place (a challenge with bandaged fingers) and I had to remove stitches and redo it twice more. But I was not discouraged.

Four more seams on the serger sewed up nicely. I pressed everything carefully and moved on to the next step, a bias-bound neckline. And here’s where I ran into trouble.

When I made the test version, on more stable cotton, I was able to easily manipulate the material and sew it perfectly. But this fabric was a whole other animal. Using the same approach as last time was, simply put, a mess. I couldn’t control the fabric, my stitching was uneven, and I quit two-thirds of the way through the process because I realized it would not work.

Part of the problem was my hands—I could not feel the fabric through bandages in order to guide it in place. And part of the problem was my eyes—so dried from the A/C that my vision was blurring. Even using a small focused light wasn’t enough help.

So, with some difficulty I pulled out the stitches and put the project down. I have an idea of how to fix it, and enough left-over fabric, if needed. But if there’s one thing I’ve learned over the years, it’s to stop when I’m frustrated, set the problem aside, and give myself time to rethink my approach. It’s really hot again for the next couple of days, so I’ll need to take both my very dry eyes and my hands into account.

But I will finish the dress.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, hands, resilience, Sjogren's syndrome

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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…

Blog Archive

Recent Posts

  • A Great Way to Start the Day
  • Making Waves
  • Glad That’s Over
  • A Patch of Calm
  • Noodling Around

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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