Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

The Power of Art to Heal

· · Leave a Comment

It’s been one of those stretches when all of my medical appointments jammed together. Since last Thursday, I’ve had one tele-med plus two in-person appointments at Boston Medical. Thank goodness for remote visits, or I would have had to drive into Boston to the same place on three different days instead of “just” two.

Even so, I am grateful for the excellent medical care I receive. I was reminded of this all the more while recently watching a new documentary, Angel Applicant, by filmmaker Ken August Meyer.

Meyer lives with diffuse scleroderma, the most aggressive form, and he tells of how he found comfort and insight into his experience from the art of Paul Klee, who died of complications from the disease in 1940, seven years after being exiled from Nazi Germany to Bern, Switzerland. Klee is a favorite of mine, too, for his luminous paintings, as well as for my sense of kinship with him as an artist who created some of his best works during the three years that he wrestled with systemic sclerosis.

Meyer’s film is the most meaningful, poignant, and true story of what it means to live with scleroderma that I have yet encountered. Though it is not in wide distribution, it won multiple awards this year and is currently available to stream on DOC NYC for $15, through November 26. I recommend it highly. You can find the link information here.

I must add that it was not easy for me to watch. Meyer’s experiences, though more debilitating than my own, resonated deeply. Everyone’s encounter with scleroderma is unique, and his has been brutal. Even as I have been living with my own version of this inscrutible disease for more than four decades, now, I gained a different sense of what I’ve been up against all these years that really shook me. At the same time, I profoundly appreciated how he has come to terms with all that scleroderma has thrown at him through his exploration of Klee’s exquisite art. We each have to find our own path in dealing with chronic illness. Meyer’s journey is inspiring.

Above all, the love of Meyer’s family and friends has been essential to his ability to persist through life-threatening challenges. I feel equally blessed.

To you and yours, Dear Reader, my best wishes for a healthy and happy Thanksgiving. Be well.

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: Communing with Paul Klee at the Museum Berggruen in Berlin, 2018. Photo by Al.

The View from Black Mountain

· · 4 Comments

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

· · 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.

Off Kilter

· · 4 Comments

I lost a friend last week. Joanna battled a deadly form of cancer, mesothelioma, for more than three years, with incredible courage, strength, pluck, and humor. She survived a high risk research trial this past spring that initially seemed to shrink her tumors, only to have them rage back within weeks. She had just begun another research trial, but the cancer had progressed too far. She died, surrounded by loved ones, Wednesday night. She was only 47.

When I learned the news from her husband’s heart-wrenching post on her Caring Bridge journal Thursday morning, I felt gut-punched. As her rabbi said at her funeral on Sunday, how could someone with such a powerful will to live be gone? It made no sense. It felt so wrong. A friend wrote in the comments to her husband’s message that a light had gone out in the universe. I felt the same.

I met Joanna nine years ago in a Jewish text study class. We were exploring Mussar, teachings and practices about different “soul traits,” such as compassion, patience, gratitude, order. As is the way in Jewish text study, we each had a study partner, and Joanna and I became a pair.

One afternoon in November, the two of us went to the local art museum to dig into the week’s soul trait, balance, which involves moderation, finding the middle path between extremes. Being not only a ballerina, artist, and yogi, Joanna also held a PhD in astronomy. As we wandered through the galleries, seeking ways to understand the meaning of balance, she brought a unique set of ideas to our conversation. Fortunately, I had written everything down in a journal, which I found Sunday after returning home from her funeral.

Rereading those notes, I felt as if she were still there, telling me just what I needed to hear after days of feeling so off kilter—that balance is not a static state. When you balance on one foot, it’s a process of constant readjustments, minuscule shifts in muscle and bone. Maintaining balance requires the offsetting of opposing forces. Physics dictates that both are necessary. Gravity, explained Joanna, causes all planets to be spherical, because gravity pulls mass toward a central point. And, we concluded, centeredness is essential for wholeness.

My notes of our conversation also reminded me that balance does not mean moderate amounts of everything. Achieving balance is different for each individual, a little of this, a lot of that, a combination of all factors in their proper relative proportions. And it’s not, by definition, symmetrical. The best example: a Calder mobile.

Unlike Joanna, who could balance so gracefully en pointe and hold perfect yoga poses, I can barely stand on one foot without falling. But I know exactly what she meant by all the tiny muscular adjustments that my foot and leg try to make to hold still. Balance is most certainly not a steady state. Even Calder mobiles flutter and twirl with the slightest movement of air.

In the weeks and months to come, when I think of Joanna, I’ll be thinking of all that I learned from her as I try to regain my sense of balance. She was a great teacher, at heart. She still is. May her memory be for a blessing.

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: Colton Sturgeon

And She Persisted

· · Leave a Comment

It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao