• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

Taste

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.

 

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

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

How I Spent My Spring Vacation

Evelyn Herwitz · June 3, 2025 · 6 Comments

I’m back home since last Tuesday night, back on East Coast time, and nearly caught up on sleep, after an intensive 12-day journey with Al to Germany. As is my way, I packed a lot into our itinerary, based in part on more research for Novel 2, which is set in Weimar Germany, and in part on things I’ve always wondered about and wanted to visit, and in part on catching up with good friends there.

We flew direct to Frankfurt-am-Main, Germany’s financial center, and used it as a hub for day trips by train to various points of interest, including Kassel, home of the Brothers Grimm for most of their adult lives; the Rhine River Valley, speckled by castles, hillside vineyards, and lovely towns; Worms (pronounced Vorms, rhymes with forms), which was a famed center of Jewish intellectual life in the Middle Ages and is home to the oldest Jewish cemetery in Europe; and Heidelberg, a renowned university city and site of castle ruins.

From Frankfurt, we took the 4-hour high speed train to Berlin, and had a guided tour of the Schöneberg district, where my mother grew up around the corner from Albert Einstein, and the location of JFK’s famous “Ich bin ein Berliner” speech in 1963; visited a variety of spectacular museums, where we saw art by Paul Klee and Gerhardt Richter; as well as learned about life in East Berlin and under the surveillance of the Stasi secret police. We also visited a wonderful puppet museum with an extraordinary collection and curators who filled me in on some history I’d been seeking.

On top of that, we had a lovely and meaningful visit with our friends, who treated us to delicious meals and took us to another beautiful and historic Jewish cemetery, the largest in Europe. Last Monday we took the train back to Frankfurt, stayed overnight, and then flew home. I was exhausted, but it was well worth it. And that’s the very short version of our travels.

What do all these things have in common? I’m thinking a lot about German folklore and how it informed culture and society in the 1930s, as well as the heritage of German Jewish communities. I’m also thinking a lot about art and censorship, which are central to my novel. And I’ve always wondered about castles on the Rhine. Fun fact: they were built by princes who wanted to collect tolls from ships traveling up and down the river—the very definition of robber barons.

I’m still processing all that we explored. I will be thinking about this trip for a long time. Grateful we could go and return home safely. Here are just a few pics of what we saw. 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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: travel, vacation

Choose Humanity

Evelyn Herwitz · October 8, 2024 · Leave a Comment

I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

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

Cutting Loose

Evelyn Herwitz · August 27, 2024 · 4 Comments

As I’ve written a few times over the years since I began this blog, packaging is the bane of my existence. On Monday morning, I was wrestling with a plastic package for a nasal spray that I use occasionally to clear my sinuses and reduce post-nasal drip and related cough. The thing was hermetically sealed. No way to open it without a pair of sharp scissors. And even that was a struggle. I ended up cutting off one edge, then slicing straight down the middle of the plastic, then adding a diagonal cut to release the treasure so ridiculously enclosed. Throughout this mission, I had to be careful not to hurt my fingers on the sharp edge of cut plastic.

Why is this necessary? Are the manufacturers that fearful of someone opening their precious package in the store and stealing the goods? As it is, you can’t even access this product in a CVS or Walgreens without summoning a sales clerk with a set of keys to open the plastic-covered shelving, which has become ubiquitous in recent months to prevent shoplifting (another dubious trend).

And must we really rely on so much plastic for packaging? All that discarded plastic eventually breaks down into microplastics, which have worked their way into the global ecosystem—and our bodies. Microplastics, defined as less than 5 millimeters across, have been documented in human lungs, maternal and fetal placenta tissues, human blood and breast milk. They have been detected on the top of Mount Everest and in the depths of the Mariana Trench. They are in the air, our food, our water. Here’s a really thoughtful overview of the extent of microplastics’ spread from Science News.

While research into the health impact of ingested microplastics is not yet definitive, there is ample reason for concern. At the very least, according to research immunologist Nienke Vrisekoop of the University Medical Center Utrecht, microplastics are a form of air pollution. We know that familiar forms of air pollution, such as smog and car exhaust, stress our lungs. Vrisekoop, who is quoted in the Science News article, expects the same will be true of microplastics.

What to do? We can’t avoid plastics altogether, not yet, anyway, but at least we can try to reduce their use in our daily lives. I’m looking at you, bottled water. I may not yet have an alternative to that nasal spray, but I’m considering writing to the manufacturer to let them know what I think of their packaging. And of course, recycling plastics is a no-brainer.

There’s a famous line in the 1967 film The Graduate, when a very young Dustin Hoffman, at a college graduation party hosted by his parents, is advised of the one word that should define his future: “Plastics.” Indeed, it has defined all of our futures. Just not in the way we expected.

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: Naja Bertolt Jensen

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Mind, Sight, Taste, Touch Tagged With: hands, managing chronic disease, packaging

The More Things Change

Evelyn Herwitz · June 18, 2024 · 6 Comments

Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

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

  • Page 1
  • Page 2
  • Page 3
  • Interim pages omitted …
  • Page 21
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

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.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in