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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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

Glad That’s Over

Evelyn Herwitz · August 19, 2025 · 6 Comments

I am writing on Monday afternoon on my laptop, as I lie on the couch with an ice-pack propped against my lower left jaw—ten minutes on, ten minutes off, to reduce swelling. This, after getting an implant, following my tooth extraction in May.

This is the fifth time in at least a decade, maybe 15 years, that I’ve had to go through this very expensive procedure, because of a scleroderma complication that causes the roots of my teeth to resorb. It is no fun, but the alternative is worse—a mouthful of missing teeth. The first two steps (extracting the dying tooth and filling in the hole with a bone graft, then implanting the base for the new artificial tooth) take about three months each to fully heal. The final stage of getting a custom replacement made is not as prolonged, but it will be at least December before it’s all completed.

Any dental work for me is a challenge. I cannot open my mouth fully because the skin around my mouth doesn’t stretch enough. Fortunately, I have found experts who know how to accommodate my limitations. My periodontist is precise and very careful with me, and he has the most calming manner, which really helps me endure the procedure.

Which involved a lot of local anesthesia, cutting open the gum around the bone graft, then drilling with three drill bits of increasing widths, then screwing in the implant with a tool that is essentially a small socket wrench, capping the implant, then filling in any spaces with collagen tissue and stitching up the gum.

The drilling is the hardest part, sending vibrations through my skull. As the width of the drill bit increases, the vibrating hum gets lower and louder. I’m always afraid that the anesthesia will begin to wear off, which it inevitably does at some point for me in these procedures. Fortunately, I caught it soon enough so he could give me more shots and finish with no significant pain. But his skilled fingers are big and my mouth is small and it is never easy.

I’ve started antibiotics as a safeguard against infection, and so far the pain is manageable with alternating Tylenol and ibuprofin. If experience is any guide, the worst is now over and it’s just a matter of healing up (and paying in installments over the next few months). Here’s hoping the next tooth that dies will hang on for a few more years.

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: Gratisography

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Filed Under: Body, Mind, Touch Tagged With: anxiety, managing chronic disease, resilience, tooth resorption

Reassurance

Evelyn Herwitz · April 22, 2025 · 2 Comments

On Monday afternoon, I finally saw my cardiologist at Boston Medical. This was no small feat. I was supposed to see him back in December, six months after our June 2024 visit, per usual. But that appointment got cancelled, and I was told the next available appointment was not until early May. I reluctantly accepted, though it made no sense to have to go to the end of the line. Then, a few weeks ago, I got a call that the May appointment had been cancelled, and next available was the end of July. I took the date to get into his calendar, but I was not happy.

So, instead of just accepting the situation, I called my cardiologist’s assistant and asked if she could find out if he could slot me in. Apparently enough patients had also called that he added more clinic days to his schedule, and I saw him yesterday.

Given all the mishegas last month with my trip to the ED for spiking blood pressure—even as we had spoken by phone a few days later—I just needed to see him in person. He knows me really well, and he has a wonderful, calming demeanor. He also understands the role scleroderma can play in heart disease. My rheumatologist had ruled out kidney involvement for the high BP, at my insistence, even as it would have been a really remote possibility. But I needed to know: Could the spike be due to thickening of heart tissue?

While it is possible to run a diagnostic to investigate that question, he said the resulting data would not be definitive. But given that my BP has now stabilized on Losartin, he said that thickened heart tissue would not be the issue. If it were, then my BP would not have come down to a normal range.

While there is some stiffening of my heart, causing Type II Pulmonary Hypertension, it does not appear to be the causal factor for the BP spike. Most likely, he said, it was the OTC decongestant I took that day, which contained pseudoephidrine, which is a vasoconstrictor. Even if it never affected me before, he said I could have built up an intolerance.

Then there was the other big fear: With all the weird heart stuff, was I at risk of just keeling over from a heart attack? No, he said. You have no evidence of any electrical issues with your heart. From my echocardiograms, he added, your heart is actually quite strong. He’s told me this before, but I just needed to hear it again.

We joked a bit, and he told me if I ever need to see him, just call his assistant and she’ll fit me in. That, and his steady hand on my back as I said goodbye, was the best medicine of all.

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: Cathal Mac an Bheatha

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Filed Under: Body, Mind, Touch Tagged With: anxiety, high blood pressure, pulmonary hypertension

And Just Like That . . .

Evelyn Herwitz · April 15, 2025 · 1 Comment

For weeks now, my bonsai, a Brazilian rain tree that I have been cultivating for nearly four years, now, has been shedding leaves. While some of this is to be expected—it’s a deciduous tree, after all—it just seemed out of the ordinary. Nearly every morning, I’d discover more yellow amidst the emerald green.

Was I watering it too little? Too much? Was my bonsai upset with the cold weather? The heat pump? Had I lost my touch? I had made sure to give it a little fertilizer to help it through the dark days of winter. A mistake?

Then, last Tuesday, all of a sudden . . . tiny new leaves! A Brazilian rain tree is characterized by multiple, symmetrical leaves that fold up like books at night. These newbies appeared as if a little green library was sprouting. And each day, since, the new leaves have grown larger, opening up to sunlight. It seems my bonsai was communing with all the plants outside that have begun to sprout their own new leaves, in synchrony.

Every spring’s rebirth is a miracle—and a reminder of Nature’s intense imperative to replenish and grow, despite the odds. It’s such a great gift, and a welcomed assurance that even when our world is so chaotic, life rebounds.

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: Sight Tagged With: anxiety, resilience, stress

A Break from the News

Evelyn Herwitz · March 4, 2025 · 8 Comments

This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. 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.

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

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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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