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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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mindfulness

Off Kilter

Evelyn Herwitz · August 1, 2023 · 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

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Art in the Park

Evelyn Herwitz · July 25, 2023 · 2 Comments

What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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: body-mind balance, mindfulness, resilience

And She Persisted

Evelyn Herwitz · July 11, 2023 · 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

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

On a Lighter Note

Evelyn Herwitz · June 20, 2023 · 4 Comments

I am back home since last Tuesday evening, our daughter is on the mend in Philly, thank goodness, and I’m nearly caught up with work, writing, volunteer activities, and keeping up with everything else that I need to keep up with. So, it was definitely time to do something fun this weekend. Al is skilled at finding hidden gems that are not far away, and for Father’s Day, he suggested we visit Forest Park in Springfield, Mass., one of the nation’s largest municipal parks, built in the late 19th century. I’m a fan of park design from that era, so we were were good to go.

I added to the mix another suggestion: a visit to Springfield’s The Amazing World of Dr. Seuss Museum, which commemorates the life and whimsy of Theodor Geisel, aka Dr. Seuss, one of Springfield’s most celebrated citizens. And that turned up another fun fact: Springfield has four other wonderful museums in the same lovely location, and admission to one is admission to all. So we added in a visit to the Michele and Donald D’Amour Museum of Fine Arts.

The best part of the Dr. Seuss Museum was having Al read to me, in his inimitable way, two books that neither of us had ever read before: There’s a Wocket in My Pocket! (1974), replete with delightful made-up rhyming words about a surprising cast of creatures hiding in a little boy’s house, and I Had Trouble in Getting to Solla Sollew (1965), an odyssey of mishaps that pokes fun at the idea that anything in life is free of troubles. Too true.

My favorite painting at the D’Amour Museum was a powerful acrylic on paper, Disappearing Forest 1, by Marlene Yu, all the more meaningful, given the Canadian wildfires. Then there were roses in Forest Park and the mysterious sphynxes guarding the dramatic mausoleum to Everett Barney, who donated much of the land for the park.

As always, I hope you enjoy my photos from our day. And watch out for those Wosets in your closets. . . . They’re actually rather charming.

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: Hearing, Mind, Sight, Smell Tagged With: body-mind balance, mindfulness, resilience, travel

Moving On

Evelyn Herwitz · May 23, 2023 · 2 Comments

The last time I had a doctor’s appointment, I went without a mask. It was a few days after the Covid public health emergency was lifted in May, and masking in medical settings was no longer required. This felt strange, but liberating. I asked the medical assistant who took my vital signs how it felt to her. After three years of having to mask for work, she said, it was both odd and freeing. She found herself feeling for her mask to be sure it was in place and realizing it wasn’t there.

Don’t get me wrong. I think that masking has been an essential step toward reducing the spread of Covid and has helped to save lives. I’m sure it also kept me safer from other viruses. But I’m glad that we’ve moved on to be able to choose safely, for ourselves and others, when to mask and when it’s no longer necessary. So far, I’ve stayed healthy (knock on wood) despite not masking in a medical setting. I stopped masking in restaurants months ago, and in stores, and even on a long flight home from Germany in March, and still stayed well. Thank goodness.

I also got my second co-valent booster the first week it became available again for seniors. So that certainly helps give me an extra layer of invisible protection. And I remain meticulous about using hand sanitizer after touching public door handles, touch screens at check-out counters, elevator buttons, and using public restrooms. I did that before the pandemic, and I have never stopped. That’s just common sense.

Recently I noticed that Covid is no longer necessarily spelled with a capital C in news stories. I’m not sure if this coincided with the end of the public health emergency. It looks a bit odd, and I’m not quite yet ready to adopt that transition in my own writing. The virus has a long shadow. But perhaps this is just one more way that the pandemic has become endemic, like influenza, which is never capitalized and even has its own nickname, flu.

Covid is actually an abbreviation, already, of its full descriptor, corona virus disease. During the worst of the pandemic, I’d seen it shortened to ‘rona’ in casual texts and social media posts. Someday, perhaps, we’ll check off the annual rona shot on our fall medical to-do lists, along with flu shots.

Whatever you call it and however you spell it, all I can say is, to the best of our knowledge, thank goodness this very long, dark chapter has come to a close. As Dr. Sanjay Gupta wrote recently, while we still need to remain vigilant, now is the time to apply the hard lessons of the past three years, stay home when sick, be proactive about our health, and invest in staying well and living healthfully.

Stay safe out there.

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: Vera Davidova

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Filed Under: Body, Mind Tagged With: anxiety, body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience

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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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