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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

Mucha stained glass window in St. Vitas’s Cathedral, Prague

Old Castle fortress, Banská Štiavnica, Slovakia

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.

Spotlight

Evelyn Herwitz · June 26, 2018 · 1 Comment

This past Sunday, I sang a solo. Our congregation was celebrating our beautifully renovated synagogue. I’m the alto in a quintet that sings on the High Holidays and for special occasions. One of our numbers was a barbershop mix set to the tune of Billy Joel’s “For the Longest Time.” I had the lead.

What a great piece to sing! And it’s rare for an alto to have the main melody. We’ve been practicing for weeks.

But, of course, despite all that preparation and encouragement from my fellow singers, I was nervous. Not just the typical oh-my-gosh-I’m-performing-in-front-of-hundreds-of-people nervous. It was scleroderma-related.

Years of lung scarring have made it harder for me to inhale a full breath, and it definitely affects my ability to hold notes and breathe with appropriate phrasing when I sing. I also have dry mouth from Sjögrens, and when I sing, I never know if I’ll either (a) have to cough at an inopportune moment or (b) collect so much saliva in my mouth that I can’t pronounce clearly. On Sunday, I was constantly clearing my throat before it was our turn—just this side of feeling like my throat would guck up.

Then there was the senior-moment-side of nervous. As many times as I’d reviewed my words, I was afraid my mind would freeze and I’d forget. Since the words were in Hebrew, they were harder to remember, even as the phrases were familiar (the opening prayer of the blessings after meals). Lately, I find that when I’m more self-conscious, my brain can go on the fritz for word recall, as if a file drawer gets stuck and refuses to open until I relax.

As a fallback, I had my music in front of me. But I wanted to make eye-contact with the audience.

Finally, it was our turn to sing. Two of the other members of the group are experienced barbershop singers, which was a good thing, since we were performing a capella. My nerves eased as we swung through the tune. In fact, our voices blended beautifully. I had enough breath, I didn’t cough, and I didn’t lose my place. A good sound system really helped. I felt great. We received many compliments afterward.

Most importantly, we had a wonderful time and added just the right bounce to an already upbeat morning. Music has a way of bringing joy into the world. I may not be able to play an instrument any more, but I’m so grateful I can still sing.

Image Credit: Israel Palacio

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!

Low-Tech Solution

Evelyn Herwitz · April 10, 2018 · Leave a Comment

One of the biggest challenges I face every day, especially during the winter, but also in transitional seasons, is keeping my hands warm. Temps need to be well into the 70s before I don’t have to offset my Raynaud’s spasms with layers of clothes.

For many years now, one of my best solutions has been fleece wrist warmers. My favorite brand is Wristies®, which are soft, affordable and come in multiple lengths, colors and styles. (And no, I do not get any kind of finder’s fee for promoting them. I just like them a lot and have a half dozen pairs that I mix and match with my outfits.)

But my Wristies, alone, are not really enough when the weather is cold or fluctuating. This fall, as I was trying to help my hands to heal from all the surgery, I hit on a low tech solution that works very well: I fold up the Wristie like a cuff and insert a disposable hand warmer.

I would have preferred something recyclable. But no reusable hand warmers that I found online were satisfactory. There are some brands that work on lighter fluid, which held absolutely no appeal. I tried a style that you snap to mix chemicals inside the plastic pouch to generate heat (you boil them to recharge), but they didn’t work. And I wanted something that was small, comfortable and long-lasting.

So that’s how I came upon Heat Factory hand warmers, which are packaged in pairs and come 40 to a box. When removed from their wrappers, they just need a little shake and last all day. I place the packs in the Wristie “cuffs” on the inside of my wrists, next to the blood vessels near the skin, and they provide gentle, steady heat that keeps my fingers nice and rosy, even when I’m typing.

The arrangement works best when I’m wearing a long-sleeved sweater with ribbed cuffs that I can pull over the Wristie, which helps to keep the hand warmer in place. I do believe this has helped me to avoid more ulcers over the winter (right now, only have one on my left thumb that is healing from yet another infection).

The other, obvious solution is exercise, of course. I must admit, I haven’t been moving as much as I need to in the cold weather. Have to get back to those daily walks. For solitary, sedentary work at my computer, however, as well as driving and even walking around on chilly days, this low-tech combo is win-win. Hope it helps you, too.

Confidence Boost

Evelyn Herwitz · April 3, 2018 · 2 Comments

Passover preparations are always a major challenge for my hands, and this past week posed no exception. To my great advantage, Al readily accepted the role of sous chef, the only way we could do all the cooking in time for the first seder, which we hosted on Friday night.

Since we serve a lot of vegetarian entrees, there was much peeling and cutting and chopping. Staging the meal involves advanced planning and careful timing of what to make a day ahead and what to make within a few hours of serving. Al did most of the prep, and I did the strategy and stirring and seasoning. Our daughters helped with last minute errands and crunch time details. Per usual, we were working right up to the doorbell’s ring. But we made it, the seder was thought-provoking, the meal delicious and enjoyed by all.

Friday night, however, I was totally exhausted when our guests left. My feet were shot from standing all day in the kitchen, and my back ached. My hands, remarkably, were in pretty good shape. Our cousins hosted the second seder on Saturday night, which provided a good respite.

By Sunday, when we hosted another big family meal, I had rested up and was able to do some of the cooking on my own. Indeed, I haven’t done this much in the kitchen since my hands fell apart last summer. I could actually grasp the handle of a French chef’s knife and chop fairly efficiently. I was very careful not overdo, and I have no new digital ulcers, as a result (at least, not yet).

My confidence got another boost on Monday afternoon, when I graduated from my post-surgical occupational therapy. My OT checked my grip strength, compared to our last appointment about a month ago, and the exercises she had given me paid off with a 20 percent improvement. I am well within functional range, which is so encouraging.

All of this means a great deal at this time of year, when my hands seem to be most vulnerable. Though I have not found any definitive research on seasonal patterns in skin ulcers, the spring months are typically my worst. It was around this time last year when my digital ulcers began to go out of control, in part exacerbated by Passover preparations. But the weather definitely has something to do with it—the constant warming and cooling, the dry air from heating systems, the transitions from warm house to not-quite-cold-but-cold-enough outside—all seem to add up to more trouble.

I’m monitoring my fingers very carefully, trying to be mindful and set limits on what I can and cannot do. But it’s always good to discover that the boundaries are wider than I assume. Just like the snow that blanketed the trees Monday morning and was gone by sundown, looks and expectations can be deceiving.

Image Credit: Syd Wachs

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