Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

Bucket List Visit

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I have loved the art of Paul Klee for decades. His whimsy, brilliant use of color, and evocative abstract works are an endless source of fascination and inspiration. He is also a personal hero. During his last five years, Klee lived with scleroderma—and despite physical limitations, this was his most prolific creative period.

Born in Switzerland in 1879, raised in Bern, Klee studied art in Munich and eventually settled there in 1906. His imaginative works and art theory grew out of his involvement with Der Blaue Reiter group of German Expressionists, including Vasily Kandinsky, August Macke, and Franz Marc, as well as his travels to Italy and Tunisia, and his years during the Weimar Republic teaching at the Bauhaus and the Düsseldorf Academy. In 1933, the Nazis dismissed him from his post in Düsseldorf, and he was labeled a “degenerate” artist.

Klee and his wife, Lily, returned to Bern and lived there until he died at age 60 in 1940. I have long wondered if the trauma of exile, losing his close circle of fellow artists and his reputation, as well as the ability to exhibit his work, all contributed to his illness. His symptoms of systemic sclerosis emerged after a bout with the measles. I’ve asked my rheumatologist at Boston Medical about Klee, and while there is no clear answer to how he contracted scleroderma (same for all of us with the disease, even 90 years later), he explained the latest theories are that scleroderma is triggered by a virus. Another theory that I just discovered is that Klee’s exposure to certain chemicals in his oil paints and thinners may have been a contributing factor.

In any case, whenever I go to art museums, I seek out Klee’s works. So, this summer, after our very intense visit to Israel, we traveled to Switzerland for a few days in Bern to visit the Zentrum Paul Klee, the largest collection and archive of his art in the world—a visit at the top of my bucket list. I was hoping to see some of his famous paintings of abstract angels—playful, sorrowful, mysterious, comforting. Unfortunately, none were on display, nor any of his largest paintings. But the standing biographical exhibition did not disappoint, as I discovered some of his smaller works that I had only seen in books. And there were also three of Klee’s wonderful puppets that he made for his son, Felix. After we toured the museum, we walked around the Zentrum grounds, the sculpture garden, and paid our respects to Paul Klee’s grave.

Here are photos of a few of my favorite art works and the museum, as well as Bern from a scenic overlook at a different location. Hope you enjoy the view . . .

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.

Choose Humanity

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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.

Birthday Jaunt

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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.

The View from Black Mountain

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Eighty years ago, my mother graduated from Black Mountain College in North Carolina. She was one of the few students in this small, experimental college to actually graduate, though the fact that the institution was never accredited caused some issues when she began to apply for work beyond the home in the 1970s.

No matter. BMC was a unique, character-shaping environment that left a deep impression on all who studied and worked at its bucolic campus, beneath the beauty of the Blue Ridge Mountains, near Asheville. The college, which existed from 1933 to 1957, placed the arts at the core of its curriculum, with a particular focus on how a specific material or medium—paint, clay, fiber, paper, wood, concrete, photography, dance, music, poetry, and more—defines and informs the act of creating. The place was a hive of interdisciplinary cross-fertilization and produced a generation of extraordinary talents, taught by some of the most influential artists and thinkers of the 21st century.

My Mom, however, was not an artist. She was a psychology major. But she also helped to build BMC’s Lake Eden campus, its second home, as part of the school’s work collective. Collaboration was key to the BMC ethos, perfected in the work program. So was democratic governance by students and faculty. Among Mom’s fondest recollections of her three years at Black Mountain was learning carpentry, pipe-fitting, masonry, and electrical wiring to help build the Studies Building and the college’s farm buildings.

I was immersed in this inspring environment over the past weekend at a conference about Black Mountain, which I shared with our younger daughter. It was a fascinating deep dive into scholarship about BMC, its students and faculty and staff, its unique educational philosophy. We met some truly wonderful people who welcomed us into their circle with open arms. It was also a needed respite from the chaos gripping the world, even as grim headlines tap-tap-tapped on my mind throughout our stay.

Somehow, despite all its many financial struggles, BMC managed to flourish through the Great Depression and World War II as an avant-garde island in the Jim Crow South. The McCarthy era of Red-baiting, as well as changes in GI education funding, eventually spelled its demise. But the cultural and intellectual contributions, as well as the mythology of Black Mountain, live on. I will be processing what I’ve learned for a long time. Already, though, I feel the gravitational pull toward a BMC way of thinking and doing. All good.

Here are some images of our visit to Asheville, the weaving exhibition at the heart of the conference, the former campus, and the stunning Blue Ridge Mountains. Enjoy, y’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.

Baltic Souvenir

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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.