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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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stress

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

What Next?

Evelyn Herwitz · June 24, 2025 · 2 Comments

Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano

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Filed Under: Body, Mind Tagged With: managing chronic disease, mindfulness, resilience, stress

Taking a Break

Evelyn Herwitz · May 13, 2025 · 9 Comments

I am happy to report that I got through my extraction of a resorbed tooth with no complications last Wednesday—no fun, but it’s done. So I was able to get my spring Covid shot on Friday, also without complications. My lungs have cleared from pneumonia,and I caught up a bit on rest over the weekend, along with enjoying a lovely Mother’s Day visit with my eldest in Boston. My finger ulcer heals slowly, but at least it continues to heal.

I’m also happy to report that my acting debut, a scene from The Glass Menagerie by Tennessee Williams last Monday night, was a success. First time I’ve performed in a play since the sixth grade, and I remembered all my lines (no small feat, giving how much harder it is to remember stuff at this age, especially with scleroderma brain fog).

And so, I will be taking a few weeks off for the rest of the month, to recharge. I’ll be back on this blog in June. In the meantime, Dear Reader, I wish you good health, good medical care, and that you make the most of each moment.

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: David Clode

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Filed Under: Body, Mind Tagged With: managing chronic disease, mindfulness, stress, tooth resorption, vacation

Rough Patch

Evelyn Herwitz · May 6, 2025 · 14 Comments

So, what I thought was “just” allergies last week turned out to be more complicated. When our geriatrics nurse practitioner came to our home for a check-up last week, she carefully listened to my lungs and informed me that I had not developed bronchitis, as I’d thought. No, I had pneumonia.

What? That was not on my bingo card. Glad she caught it before it got even worse. I started antibiotics that afternoon, and within a few days I was starting to feel like myself again. Thank goodness, because I was getting pretty worried about where all this was headed.

Also, on Monday night I had my acting class performance—first time on stage since elementary school, a scene from Tennessee Williams’s The Glass Menagerie. We’ve been rehearsing for months, and I sure didn’t want to have to miss it. (I’m writing on Monday afternoon, so fingers crossed all goes well.)

Next on the medical agenda is a tooth extraction on Wednesday and prep for another implant. So, yet another reason I need to get past this whole respiratory episode. The tooth is definitely failing, getting more sensitive, so it really can’t wait much longer.

Then on Thursday, it’s back to the Wound Clinic to check on my slowly healing ulcer. It’s improving gradually, but needs a lot of TLC.

When all that’s done, I need to get my spring Covid vax, I hope on Friday, if all goes according to plan. We’re traveling again soon, so all this has to be wrapped up by the end of the week.

Meanwhile, Al caught whatever I had that wasn’t allergies, and is doing better but still recovering.

Of course, it could always be worse. But this has been one rough patch. Here’s hoping we’re both finally on the mend.

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: Nik

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Filed Under: Body, Mind, Touch Tagged With: finger ulcers, managing chronic disease, resilience, stress, tooth resorption

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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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