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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Standard Time

Evelyn Herwitz · November 6, 2018 · Leave a Comment

So, we set the clocks back this weekend, and the days feel much shorter—even though the amount of daylight is actually only a few minutes less than it was before. It’s all relative. How you perceive length of days depends on  how the rising sun and impending darkness encircle your waking, working, active hours.

Even as I know this, the shift to an earlier sunset always feels claustrophobic. My body has to adjust. The older I get, the less I’m convinced that switching the clocks is really necessary. It’s an artificial imposition on nature’s true rhythms.

But this is just howling at the moon. I try to remind myself that our reversion to standard time also means that in a few weeks we will arrive at the winter solstice, and the days will grow longer, once again.

The earth spins, the pendulum swings, the tides ebb and flow. Election Day has finally arrived, and tomorrow, whatever the outcome, the sun will still rise and set. I try to remind myself that the longest nights eventually give way to more daylight. I try to remind myself that change is the only constant.

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: United States seen from orbit photo by NASA

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, mindfulness, resilience

What I Want

Evelyn Herwitz · October 30, 2018 · 4 Comments

I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us 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.

Image Credit: Zoran Kokanovic

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

Refreshment Break

Evelyn Herwitz · October 16, 2018 · 2 Comments

I made myself take a walk Monday afternoon. It was short, just around the block, but I got outside. It feels like fall, now, damp, chilly, and I need to get acclimated to the change in seasons. I’m back in sweaters and warm pants and thick socks, my long coat, hat. I wore mittens over the weekend.

It’s all too easy to make excuses to myself to stay inside when the weather turns. It’s too overcast. It might rain. It looks dreary. I don’t want my fingers and face to get numb.

So my short walk was a good reality check, as well as a much needed breath of fresh air. Even as it was overcast and had been pouring earlier in the day, the rain held off. The air smelled sweet with the tang of humus. My joints limbered up. My mind brightened from a jolt of oxygenated blood.

It was also good to see the neighborhood beyond my computer screen. Trees are turning late this season in Massachusetts, due to a warmer-than-normal summer and early fall. Usually we’re at peak foliage right around Columbus Day weekend, but this year green still predominates. Only the sugar maples, so far, have begun to flame and shed their leaves.

Pumpkins, plastic tombstones, skeletons and fake cobwebs decorate a few neighbor’s lawns, but the Halloween craze of a few years back seems to have ebbed. That’s fine with me. More than ghosts and goblins, there are quite a few red, white and blue signs promoting political candidates for the upcoming November election. That’s fine with me, too.

A new neighbor’s house has been repainted; that neighbor’s repairs are complete; another’s is in progress, with boards hammered over the front door. Al decorated our front steps with mums, pumpkins, gourds and cornstalks over the weekend, and I’m pleased with the result as I walk up our drive.

Back inside, I realize my fingers and lips have gone slightly numb. But it’s warm in the house, and I feel refreshed. Worth repeating.

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, Smell, Touch Tagged With: body-mind balance, how to stay warm, managing chronic disease, Raynaud's, resilience

Progress Report

Evelyn Herwitz · October 2, 2018 · 4 Comments

A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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, Smell, Taste, Touch Tagged With: body-mind balance, calcinosis, finger ulcers, hand surgery, hands, managing chronic disease, resilience

Back Home

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

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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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