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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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vacation

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Evelyn Herwitz · September 18, 2018 · 2 Comments

Home from our summer travels for about a week-and-a-half, but already it seems like a long time ago that we were away. That’s the strange thing about vacations. You’re completely immersed in your environs while you’re there, but once you’re back, it’s almost as if you never left.

Which is why I keep a travel journal, and we take plenty of pictures (especially my dear husband). If a tourist walks in a city and leaves without a record, was she really there?

Yes, I was, with Al—in Prague, Bratislava, Vienna and Berlin. Sixteen days, four countries, a crash course in European history, spectacular scenery, wonderful art. This trip was also personal: the bookends of our itinerary were designed to honor the memory of my great grandparents, who were murdered in Eastern Europe during the Holocaust.

My mother’s father, a professor of engineering at the Technische Universität Berlin, saw the writing on the wall in 1935 when he lost his position because he was Jewish. In 1936, after five months of searching for work in the U.S., he was able to find a good job and make a new home for my grandmother and mother. But, despite a heroic effort, he was unable to convince his elderly parents, who loved their homeland, that they should emigrate, as well, until it was far too late for them to escape the Nazis. They were transported to what is now called Terezín, a concentration camp about an hour’s drive from Prague, in August of 1942, and died there in early winter of 1943.

No one in my family has ever gone to Terezín. So, with a private tour guide, we visited the camp and learned details of my great grandparents’ final months. We lit candles in their memory. Later, at the end of our journey, we joined friends in Berlin for the placement of two Stolpersteine, or “stumbling stones,” which are memorial cobblestones placed in the sidewalk next to the home where victims of the Shoah last lived of their own free will. These were powerful experiences for me, which I am only beginning to process and understand. It is one thing to know the history of World War II in the abstract, and quite another to confront such horrors in the lives of your own family.

We enjoyed uplifting experiences, as well: fairytale scenery in Prague, a day trip to Slovakia’s High Tatras amidst the Carpathian Mountains; a visit to a medieval silver mining town, also in Slovakia, one of several UNESCO World Heritage sites that we saw during our travels; extraordinary artwork by two of my favorite painters, Egon Schiele and Paul Klee, in Vienna and Berlin. And, oh, yes, some very delicious food. My hands held up, my feet wore out, but I’m so grateful that we were able to honor my great grandparents’ memory and have another overseas adventure, whatever the challenges—physical and emotional.

Here are a few highlights:

View of Prague Castle from the Charles Bridge
John Lennon Wall, Prague
Mucha stained glass window in St. Vitas’s Cathedral, Prague
Devin Castle ruins, Bratislava
High Tatras, Slovakia
Old Castle fortress, Banská Štiavnica, Slovakia
Belvedere Palace and Museum, Vienna
1936 Olympic champion Jesse Owens’ name carved in the wall of the Berlin Olympiastadion (top left column)
“Landschaft in Blau” (Landscape in Blue) by Paul Klee, 1917, Berggruen Museum, Berlin
The Stolpersteine honoring my great grandparents, Berlin

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

Savory Summer

Evelyn Herwitz · August 21, 2018 · Leave a Comment

Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

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 Credit: Aron

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

What Comes Next

Evelyn Herwitz · July 31, 2018 · 3 Comments

This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.

At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.

Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)

Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.

August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.

There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take you.

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 Credit: David Monje

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hand surgery, hands, managing chronic disease, mindfulness, resilience, travel, vacation

48 Hours

Evelyn Herwitz · July 3, 2018 · Leave a Comment

It’s been nearly 30 years since I visited our nation’s capital. This past weekend, Al and I packed in a slew of sightseeing in Washington, D.C., around a family celebration in Virginia. In just over 48 hours, we visited the National Gallery, Lincoln Memorial at night, Vietnam Veterans Memorial (also at night), Supreme Court, Capitol grounds, Newseum, National Gallery Sculpture Garden, National Archives, Hirshhorn Museum and National Gallery East. On Saturday morning, in sweltering heat, we participated in the Families Belong Together protest rally in Lafayette Park, next to the White House.

I walked my feet off. It was worth it. The highlight of DC, for me, was seeing the original Declaration of Independence, U.S. Constitution and Bill of Rights at the National Archives. The parchment is huge, the writing faded, the signatures inscribed by human hands. The ideals endure. I was reminded by an exhibit about women’s suffrage at the National Archives and the chiseled words of Lincoln’s second inaugural address at the Lincoln Memorial of how much struggle and acrimony is embedded in our nation’s history. I felt the power and protection of the First Amendment in Lafayette Park.

Here are some of my favorite images from our trip:

The conclusion of Lincoln’s second inaugural address at the Lincoln Memorial
Lincoln Memorial at night
Seen in a garden on our way to Capitol Hill
Protesters outside the Supreme Court
Heading toward the U.S. Capitol Building
Section of the Berlin Wall at the Newseum
National Gallery Sculpture Garden
Families Belong Together protest in Lafayette Park
Calder sculptures at the National Gallery East
Saul Steinberg, Untitled (A Conversation), National Gallery East
Le Gourmet, Picasso, National Gallery East

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, Touch Tagged With: feet, managing chronic disease, mindfulness, resilience, travel, vacation

Time Out

Evelyn Herwitz · June 19, 2018 · 2 Comments

Sometimes I feel as if my head is going to explode from our nation’s vicious politics. So it was a great pleasure and privilege to go with Al to one of our favorite getaways on Sunday, Block Island, just off the Rhode Island coast, for a relaxing Father’s Day. The weather was perfect; the sky, azure with wisps of clouds; the water, emerald and sapphire. I stayed away from my news feeds. Best of all—no crowds. Public school is not yet out, so it was the calm before tourist season begins

I read, watched Al brave 58°F water, walked the beach, took photos and collected stones and sea glass. I got my feet wet, too, even if my toes turned purple. (Added bonus: walking barefoot on wet sand helped me to remove a nasty corn from my left foot that had re-emerged shortly after my podiatrist took it out a couple of weeks ago, a huge relief and boost in my ability to walk without pain.) After supper and some shopping, we sailed back to the coast on the ferry’s upper deck, enjoying a beautiful sunset. Just what the doctor ordered.

Here’s a taste of our visit. 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, Touch Tagged With: body-mind balance, managing chronic disease, Raynaud's, resilience, travel, vacation

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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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