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Reflections on the Messy Complexity of Chronicity

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vacation

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.

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

Birthday Jaunt

Evelyn Herwitz · May 7, 2024 · 2 Comments

Covid over (despite a scare last Monday when I developed a sore throat that, fortunately, resolved on its own), Al and I celebrated my birthday last Wednesday and Thursday with a quick trip to New Haven and New York City. My goal was to see a couple of art exhibits, one at Yale and the other at the Neue Galerie in Manhattan. The weather was sunny, the art stunning, the food excellent.

We stayed overnight in New Haven at a hotel that functions solely on electricity and is fossil-fuel-free, the Hotel Marcel, named for Marcel Breuer, a Bauhaus luminary who had originally designed the building as the corporate headquarters for Armstrong Rubber Co. Converted to a hotel with a commitment to sustainability and many curated Bauhaus details, it aims to be the first certified “passive house” hotel in the U.S. by the end of next year.

So, it was a fascinating trip, on many levels. Here are some of my favorite pieces from the Yale Art Gallery (no photos allowed at the Klimt landscape exhibit at the Neue Galerie). Photo above is one of my favorite NYC views, the constellation mural and lights on the ceiling of Grand Central Station. Enjoy!

Edvard Munch, Toward the Forest I, 1897
Ernst Ludwig Kirchner, Schlemihl’s Encounter with His Shadow, 1915

Joan Miró, Jeune fille s’evadant (Girl Escaping), 1968
El Anatsui, Society Woman’s Cloth (Gold), 2006
Paul Klee, Heitere Gebirgslandschaft (Joyful Mountain Landscape), 1929
Wassily Kandinsky, Mit baumtem Kreis (Multicolored Circle), 1923
Josef Albers, Skyscrapers A, ca. 1929

 

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, Taste, Touch Tagged With: body-mind balance, mindfulness, resilience, travel, vacation

Baltic Souvenir

Evelyn Herwitz · September 12, 2023 · 6 Comments

Last Wednesday, at midnight, Al and I returned from a two-and-a-half week trip to the Baltic states of Lithuania, Latvia and Estonia. I’m still processing all that we saw and heard and learned. It was a powerful journey that exceeded all our expectations. I planned a complex itinerary: fly to Helsinki, Finland, stay a couple of nights to recover from jet lag, then fly to Vilnius, explore for five days, go on to Riga for four days, then to Tallinn for another four days, catch the ferry back to Helsinki, and fly home the next day. And that is what we did.

We promised ourselves, in making this trip, to honor the memories of family who had perished in the Holocaust. Al was especially committed to commemorating his maternal grandmother’s brother, Avram Itzek, whom he believes was his namesake, and who chose not to leave his home town about an hour from Vilnius, in what is now Belarus, because it was where he felt he belonged. He was killed in the Holocaust. I hoped to uncover traces of my maternal grandfather’s Berlin cousins, who were deported to Riga in 1941 and perished there, though details of their fates are not known. We also hoped to learn more about the vibrant Jewish communities that once flourished in these countries and about what it meant to break free of the Soviet Union three decades ago—a historic moment made all the more poignant and relevant in light of the war in Ukraine.

Geopolitics made it impossible to visit Avram Itzek’s home town of Ashmyany—the day we landed in Helsinki, our embassy in Minsk told all Americans to leave Belarus because activity there by the Wagner Group, which has supported Russia’s invasion of Ukraine, made it too dangerous. The day we landed in Vilnius, Wagner leader Yevgeny Prigozhin’s plane fell out of the sky, undoubtedly retribution by Putin for his short-lived revolt against the Russian military back in June.

So, even a trip to the border for a glimpse in Ashmyany’s direction was out of the question. But as Al read more of the family history he’d brought along, he realized that before his grandmother’s family moved to Ashmyany, they had lived in the small village of Dieveniškes, located in the far southeast corner of Lithuania. With help from a friend, we traveled there on our last day in the country and found the Jewish cemetery where Al’s ancestors were laid to rest.

In Riga, we took a Jewish heritage tour with a private guide, and at the Museum of the Riga Ghetto and Holocaust in Latvia stood a long Wall of Remembrance with thousands of names. On the wall for Jews deported from Berlin in 1941, I found the name of my maternal grandfather’s first cousin, though not her husband, young son, or mother, who had all come with her. The Museum’s executive director, who sat with me to take all the family information that I had about these lost relatives, gave me a much needed hug and promised to research archives to find out what became of them all.

Not everything on our travels was heavy. A few fun facts: People in this part of the world are TALL. I thought it was my imagination, or a stereotype, but it’s true. In fact, in our Air BnB flat in Riga, I at first wondered why the closet hooks and hanger rod were up so high—then I realized, for tall people it was just right, especially because their longer clothes need more room to hang. Also, although ice hockey is the national sport of Latvia, both Latvians and Lithuanians are crazy about basketball. That, and chess. Everywhere we went, we saw chessboards, in libraries, in courtyards, in parks. And, everywhere we went, the food was outstanding.

The Old Town in Tallinn was the most beautiful of the three we stayed in, one of the best preserved medieval towns in Europe, still with its walls in tact. Much work is ongoing to preserve and restore buildings, many of which, here as in Riga and Vilnius, were destroyed in wars. One of the buildings in Old Town is painted a sugary pink. It is surrounded by metal crowd-control fencing, which is covered with posters protesting the war in Ukraine, as well as occupied lands in Georgia. This is the Russian Embassy in Estonia.

Throughout our travels, we saw Ukrainian flags flying in solidarity, Ukrainian blue and gold everywhere—from the Town Hall in Vilnius on our first night, illuminated as a rippling blue and gold flag on the eve of Ukraine’s Day of Independence anniversary, to an exhibit of new Ukrainian medals for bravery in battle at a museum of knighthood in Tallinn. These Baltic states, all about thirty years old as independent democracies, understand what it means to be conquered by Russia. Stories, of exile to Siberia under Stalin, of authoritarian rule, of always being under surveillance by the KGB, have not faded. And history is tragically repeating in neighboring Ukraine.

Whenever I travel abroad, to countries with much longer histories than these United States, I am reminded that world dominance ebbs and flows like the oceans that separate our continents. Authoritarian forces threaten democracies around the world and here at home. If history is any guide, we cannot take our own democracy’s survival for granted. I came home convinced, more than ever, that we must do all we can, especially this year, to preserve and protect free and independent, inclusive elections, so that the fate of our nation rests in the hands of the many, not of the few who would remake it in their own image.

So, that is what I’ve been thinking about as we traveled through the Baltics, and what I continue to wrestle with now that we’re back home. It was a journey that will stay with us for the rest of our lives. Here are just a few images from our trip . . .

 

Helsinki, Finland

In and Around Vilnius, Lithuania

In and Around Riga, Latvia

Tallinn, Estonia

Ferry to Helsinki

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: resilience, travel, vacation

A Big Apple Birthday

Evelyn Herwitz · April 25, 2023 · 4 Comments

Last Tuesday was my 69th birthday, so what better way to celebrate than to spend it in New York City, one of my favorite places in the world. I hadn’t been to New York since before the pandemic, which was rather stunning to realize as I planned our overnight jaunt. So, we made the most of it.

On Monday afternoon, we left our car in New Haven and took the train (seniors get a 50 percent discount—a definite advantage of aging) to Grand Central, then walked to our hotel, called (how could I resist?) The Evelyn, just north of Madison Square Park in so-called NoMad. Not only was the hotel’s name appealing, but also the decor—Art Deco and themed to nearby Tin Pan Alley, the birthplace of popular American music at the turn of the 20th century. The row of buildings on West 28th Street where songs like Give My Regards to Broadway by George M. Cohan and Take Me Out to the Ball Game by Albert Von Tilzer were composed and published have been preserved, although, true to New York’s evolving neighborhoods, they now house a group of wholesale hat and scarf importers.

On Monday night, we had dinner in the East Village at Caravan of Dreams, which serves creative and delicious vegan organic dishes, quite a treat. After a restful sleep, we spent much of Tuesday at the Museum of Modern Art. There is currently a fantastic, curated retrospective of the museum’s collection, including works by German expressionists and some Bauhaus pieces that I wanted to see. But there is always so much to savor at MoMA, and it was great to be back.

We had lunch at the museum’s Terrace Cafe, and when I ordered a slice of chocolate cake with raspberry sauce (one of my favorite flavor combinations) to split with Al, he informed our waiter that it was my birthday. Soon the waiter returned with the cake and a candle and a song, and when he finished, the whole place applauded. I felt very celebrated and grateful. And the delicious cake was on the house.

All in all, a wonderful way to mark #69. Here are some photos of favorites. Enjoy.

“Storm Clouds Above Manhattan” by Louis Lozowick (1935)

 

“Modjesko, Soprano Singer” by Kees van Dongen (1908)

 

Decorative dividers, including Frank Lloyd Wright stained glass and woven hanging by Annie Albers

 

“Wind Tunnel Construction, Fort Peck Dam, Montana” by Margaret Bourke-White (1936)

 

“Broadway Boogie Woogie” by Piet Mondrian (1942-43)

 

“Dr. Mayer-Hermann” by Otto Dix (1926)

 

Bauhaus tableware

 

“Around the Fish” by Paul Klee (1926)

 

View in the Sculpture Garden

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: body-mind balance, mindfulness, resilience, travel, vacation

Auf Wiedersehen

Evelyn Herwitz · March 28, 2023 · 8 Comments

And so, I made the trip to Germany. On my own, abroad, for the first time in my life. It was an extraordinary, transformative experience, not only for all that I saw and learned, and all the people I met along the way, but also for rediscovering that fearless explorer within, who has been hiding for decades since I first heard the word scleroderma.

As I’ve written here in recent months, the past couple of years with this disease have been more complicated. Finding myself suddenly short of breath when physically or emotionally stressed led to a battery of diagnostic exams, and ultimately a diagnosis of Type 2 Pulmonary Hypertension. Thanks to my wonderful cardiologist, I found a calcium channel blocker that works for me and mitigates the worst of the symptoms. I’ve also learned some new breathing techniques that help to avoid the problem when I start feeling stressed.

With all that, as I began to feel better again and moved past the worst of the pandemic, I felt a great need to get out—get out of my head, get out of my routine, and get out of the country to travel once more. I needed to prove to myself that I could do this on my own. Working on a novel about Germany during the Weimar Era and rise of the Third Reich, I had to see what I’d only been able to read about, and I needed to focus. I have family roots in Germany, as well. My mother and her parents immigrated to the U.S. in 1936 to escape the Nazis. So the visit was multi-layered.

As is always the case with travel, not everything went as planned. On both ends of my trip, I had to make last minute changes in my transatlantic flight—pushing back my departure from Boston by two days to avoid a Nor’easter that was threatening to wreak havoc with snow and high winds, and leaving a day early at the end when my flight home from Munich was cancelled due to a planned airport strike. (Yes, they plan strikes there, so you can work around it.) There were also two instances when the S-Bahn (commuter rail) in Berlin was running late or disfunctional, and I had to figure out how to grab a taxi to get to a tour on time. But it all worked out. And, to my amazement, I just rolled with it and problem-solved along the way.

For the most part, however, the trip was a wonderful journey, beginning with my seat mate on the way over, who was from Munich and gave me excellent suggestions for my two-night layover there. From Munich I flew to Berlin, where I stayed five nights in the very funky Hotel-Pension Funk, the former home of a silent film star that is decorated in period Art Nouveau style. I immersed in history, art, design, and architecture, including a visit to the Museum der Dinge (Museum of Things), where I learned about design standards as the country shifted from handcrafts to industrial manufacturing, and an outstanding private tour of sites and stories about Weimer Berlin. I also had dinner one evening with good friends and spent a day touring with them, as well.

From Berlin I traveled by train to Dessau, just under two hours southwest of Berlin, to stay at the Bauhaus, now a UNESCO World Heritage site. The Bauhaus School was in existence from 1919-1933, first in Weimar, then in Dessau, and finally for a brief period in Berlin before it closed under Nazi pressure. Founded by architect Walter Gropius, the Bauhaus melded art and technology to rethink how people could live and work humanely and cooperatively in post WWI society. I stayed two nights in what had been student housing, and toured the building as well as the outstanding Bauhaus Museum in the city.

From Dessau, I took a high speed train back to Munich, where I stayed at a small, very comfortable modern hotel in the Altstadt (Old City). My time in Munich at the beginning and end of the trip focused on why and how the Nazis formed there and gained power under Hitler. In both Berlin and Munich, I also visited concentration camp memorials—Sachsenhausen outside of Berlin and Dachau outside of Munich. Both tours were powerful experiences, sobering, profoundly thought-provoking. There is much dark history in Germany, but also a deep public reckoning with the past.

In Berlin, on Shabbat, I went to a synagogue that was a short walk from my hotel. The Pestalozzi synagogue was burned on November 9, 1938, on what has been called Kristallnacht, the Night of the Broken Glass, but is now referred to in Germany as the Reichspogrom—a more accurate description of the two nights when Nazis directed the destruction of synagogues and Jewish-owned businesses in pogroms throughout the country. Pestalozzi was not totally destroyed (burning it risked a neighborhood that the Nazis wanted to save) and was restored and rededicated after the war in 1947. It is a beautiful building, and the service felt much like ours at home.

Later, I realized that I was the first member of my family to set foot in a Jewish house of worship in Berlin in a century. It was one of the most important moments of the trip. I am still processing all that I experienced, and will be for some time. I am glad to be home, but I was also sad to leave. Most of all, I’m grateful to my dear Al, our wonderful daughters, many friends, and my entire medical team, who fully supported me on this adventure, and for the fact that I was able to thrive on my own.

Here are just a few images from my travels.

Nymphenburg Palace in Munich, where I walked the grounds to stay awake after my transatlantic flight.

 

Hotel Laimer Hof, my accommodations in Munich at the beginning of the trip

 

The breakfast room at the Hotel-Pension Funk in Berlin

 

Dishes and utensils at the Museum der Dinge, which reminded me of my grandmother’s china and flatware

 

TV sets at the Museum der Dinge

 

Starving Sachsenhausen prisoners drew this on the walls of the camp kitchen’s potato peeling cellar.

 

Berliner Ensemble, formerly the Theater am Schiffbauerdamm, where Bertolt Brecht’s and Kurt Weill’s Threepenny Opera debuted.

 

Inside Friedrichstadtpassagen shopping center, former site of two famous clubs, the Weisse Maus and Cabaret of the Nameless

 

Theater des Westens. The basement housed the Tingel-Tangel Cabaret, which performed biting satire of the Nazis even for a few months after Hitler became Chancellor in 1933.

 

At the Berlin Hauptbahnhof, waiting for my train to Dessau

 

The Bauhaus in Dessau, view of the Studio Building where I stayed

 

Costumes for a Bauhaus dance performance, at the Bauhaus Museum in Dessau

 

Weaving at the Bauhaus Museum by Gunta Stöltz (1928), rewoven/restored by Katharina Jebson (2022)

 

Student notes from a Bauhaus class with Paul Klee, Bauhaus Museum

 

Bike rack on the high speed ICE train to Munich

 

The Neues Rathaus (New Town Hall) in Munich

 

Munich memorial to victims of the Nazis

 

Public mural in Munich

 

Memorial to prisoners at Dachau Concentration Camp Memorial Site

 

Commemorating those who died at Dachau

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, managing chronic disease, pulmonary hypertension, resilience, vacation

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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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