Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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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.

Savory Summer

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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

See at Last

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There is nothing like a new pair of glasses with an accurate correction. For months, now, I have been tolerating slightly blurred vision, the aftermath of 60 dives in a Hyperbaric Oxygen chamber last fall to heal my hands from major surgery. This is a common side effect of the treatment, and, as predicted, after about three months, my sight returned to almost normal.

But the almost part was pretty frustrating—just blurred enough so I had trouble reading street signs, especially later in the day when my eyes are drier from Sjogren’s. In any kind of auditorium setting, I had trouble clearly discerning people’s faces or what was projected on the movie screen. I kept waiting for my vision to settle down, but it never went back to what it was prior to the HBO therapy.

So, it was high time a couple of weeks ago to get a check-up and new prescription. Unfortunately, our vision insurance only gives a discount on new frames every two years, and I had just gotten new glasses last summer. Fortunately, however, a local college here trains optometrists, and as long as you are willing to take the extra time for an exam by the students, you get a 50 percent discount on frames at the college’s frame shop—also a training venue. It’s a great deal, and well worth being a guinea pig for the students, who are lovely, very earnest and dedicated to getting it right.

I picked up my new frames last Thursday. They are wonderful. Not only can I once again see all the leaves on trees and easily read signs when I drive, but I am now enjoying transitional lenses, which turn amber-brown in the sunlight. My eyes are incredibly light sensitive due to Sjogren’s dryness, and I have constantly fumbled with switching from clear lenses to prescription sunglasses when going in and out of buildings on a sunny day. Now the lenses do the work for me.

I’m still getting new prescription sunglasses. The one hitch with transitional lenses is that they don’t get completely dark in warm weather. The optician explained that the lenses are temperature sensitive, as well, and turn their darkest in winter months. Given the heat we’re sweltering in lately, I need more visual protection for summer.

But I’m happy. I can finally see what I want to see again, without eyestrain or fatigue. What 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 Credit: David Travis

What Comes Next

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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

Operating Instructions

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This one’s short.

In Anne Lamott’s Operating Instructions, a memoir of her son’s first year and her struggles as a single mother, she recalls this anecdote about writer’s block:

. . . I remembered the other day a weekend I spent with my family at our cabin in Bolinas when I was seven or eight and my older brother was nine or ten. He had this huge report on birds due in school and hadn’t even started it, but he had tons of bird books around and binder paper and everything. He was just too overwhelmed, though. And I remember my dad sitting down with him at the dining table and putting his hands sternly on my brother’s shoulders and saying quietly, patiently, “Bird by bird, buddy; just take it bird by bird.” That is maybe the best writing advice I have ever heard.

Lamott went on to write, among other books, Bird by Bird, which is, indeed, one of the best writing books out there. But her father’s advice applies to many other situations, too—when there’s too much to do, too many deadlines, too many uncertainties, too many worries, just too much stuff. Nothing big and complex and important ever gets solved or resolved in short order, be it creating a work of art, managing a chronic disease or anything and everything in-between. Bird by bird.

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: Rafael Rodrigues Machado