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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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resilience

Great Escape

Evelyn Herwitz · July 23, 2019 · 9 Comments

As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, managing chronic disease, Raynaud's, resilience, travel, vacation

A Flamboyance of Flamingos

Evelyn Herwitz · July 16, 2019 · 6 Comments

This one is just silly. Because we all need some silliness these days.

I’ve been watching the birds at our feeder, a favorite meditation. The feeder looks like a globe cage (to keep out the squirrels) hanging from a pole attached to a maple in our backyard. We hadn’t filled the feeder in some time, because chipmunks had figured out how to climb the pole, slip into the feeder, and steal all the food. So far, they haven’t rediscovered it, although at least one squirrel has now learned how to climb the pole, jump onto the feeder, and swing it wildly so food dumps on the ground. Clever critters.

But back to the birds. Sparrows have taken over the feeder. They travel in gangs, which reminded me of all the wonderful words for groups of animals. There are the familiar terms—a pride of lions, a school of fish—but bird flock terminology is the best.

Take, for example, a quarrel of sparrows. So appropriate, considering how much they chatter and cheap.

Here are some other favorites:

  • a parliament of owls
  • a peep of chickens
  • a charm of hummingbirds
  • an asylum of loons
  • a palette of painted buntings
  • a Vatican of cardinals
  • and, best of all, a flamboyance of flamingos

Which got me to thinking . . . what if we had similar descriptors for professions, such as:

  • a vault of bankers
  • a drill of dentists
  • a hose of firefighters
  • a pontification of politicians
  • a diagnosis of doctors

Which then led me to specialists . . .

  • a pulse of cardiologists
  • a rash of dermatologists
  • a pod of orthopedists
  • an inflammation of rheumatologists
  • a stream of nephrologists

Which brings me to all of us who deal with specialists all the time. How about this?

  • a persistence of patients

Happy July.

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: v2osk

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

Summer Solstice

Evelyn Herwitz · June 25, 2019 · Leave a Comment

At Stonehenge in England this past Friday, about 10,000 people gathered to watch the sun rise in perfect alignment with the entrance to the ancient stone circle. The summer solstice has come and gone in the Northern Hemisphere. Even as we mark the beginning of warm summer months, the days are now growing shorter once again.

Somehow, I wish the days could just stay longer for a little while. Even as we have months of (I hope) balmy weather ahead, there’s something that always makes me a little sad when the solstice passes, and our half of the Earth begins to tip every so slowly away from the sun for the next six months. It’s all in my head, I know. But still.

My hands and feet are just so much happier during the long days of summer. That is, of course, so long as I stay out of overly air-conditioned buildings. I took advantage of a sale this past week and got some new wrist warmers to add to my collection—as essential in the summer when stores and restaurants insist on maintaining arctic temperatures, as in the winter when arctic air blows into New England from Canada.

At least I can now take my neighborhood walks without a jacket or even a sweater. It’s easier to get out the door for appointments, too. Less stuff to put on.

Time to savor summer, even as daylight slowly dwindles.

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: Hello I’m Nik

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, managing chronic disease, mindfulness, Raynaud's, resilience

Time Travel

Evelyn Herwitz · June 18, 2019 · Leave a Comment

It was just two weeks ago, on Monday, that I flew home from Florida after meeting my cousin and her parents for the first time. But it already seems much longer. That’s one of the strange aspects of time and distance: You can go away and feel completely immersed in a new place, with new people, and then return home, where it feels like all that was a dream.

But it most certainly was real. Last fall, out of the blue, I received a message from my second cousin. Her mother, who is now 95, was my mother’s first cousin; her grandmother was my grandfather’s younger sister. Our mothers grew up together in Berlin, but went separate ways when my mother and grandparents immigrated to America in 1936. My cousin’s side of the family moved to Bulgaria and waited out the Second World War until 1948, when my grandfather sponsored them to come to the U.S. Like me, my cousin was born in the States. Her family settled in the Midwest, and mine eventually made a home on the East Coast.

I knew of her, and she knew of me, but for reasons that neither of us could figure out (“Why have we never met?” was one of the weekend’s refrains), our mothers never saw fit to get together as adults. They did, however, maintain a robust email correspondence in their seventies, which ended with my mother’s death in 1999.

Fast forward to the recent past, when my cousin moved her parents (her dad is 94) from their Indiana home to Florida, so that she could care for them close by. In the process, she discovered a treasure trove of family pictures and other memorabilia. And, fortunately for me, she couldn’t bear to toss any of it. She wondered if I or my sister might want some of the photos, poems written for special occasions, wedding invitations, death notices, steamship manifests, greeting cards, thank you notes, and more. A determined researcher, she found me and took a chance on making a call.

Since that initial contact, we’ve been emailing back and forth. I asked if I could meet her and her parents, and received an enthusiastic yes. So, I went. We hit it off immediately and stayed up late each night talking about family and all that we have in common. Her husband was out of town, and two grown sons off on their own, so we had the house to ourselves. It was wonderful to spend time with her parents, too; we had great conversations about family history and even spoke a little German. And my cousin and I got to the beach.

So many photos, so many memories, so many stories. There were pictures of my grandfather’s youngest sister, who died when she was 26, before the War. I had always heard of her, but never known what she looked like. There were pictures of my grandparents as a young couple, and of my grandmother as a girl with a huge bow in her hair. There was a poem that my mother, then an infant, supposedly wrote on the occasion of a family wedding. There was a picture of my grandmother tending my mother as a baby. There was a family tree with information my cousin had gleaned as a high school student from her grandmother, which filled in some missing puzzle pieces.

There were also many photos of people I did not recognize. My cousin still hopes to find out their identity. She feels a pull to honor their memory. And harbors a deep wish not to end up as a nameless person in an image, whom no-one recognizes. It was a poignant observation, all the more relevant in this digital age, when it’s so easy to point and shoot and amass thousands of images in the cloud, to live forever as bits of anonymous data.

It is strange how sepia-toned photographs call to us across time and distance. I stare at these images of my German relatives and wonder—what were they thinking when those photos were taken? What did they know of the coming storm that would force them to make the most difficult choice imaginable, of leaving home to escape such horrific danger? They look so innocent, so content in their familiar world.

And I wonder: how would our lives have been different if my cousin and her family had known mine, growing up? I’ve always wondered what it would be like to have a cousin. Both my parents were only children, and our extended family was very small. At least, now, thanks to my cousin, I can find out.

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: resilience, travel, vacation

Gray Matter

Evelyn Herwitz · June 11, 2019 · 2 Comments

It was a beautiful weekend here in Central Massachusetts, sunny, warm, light breeze, no humidity. Walking the neighborhood was a real pleasure. Despite the lovely weather, however, I spent quite a few hours pouring over my German textbooks and dictionaries. We have a unit test in class Tuesday night, and even though it’s meant to check our own understanding and has nothing to do with grades (there are none), I don’t want to totally embarrass myself by leaving half the questions blank.

I am one of the oldest, if not the oldest member of our class. There is one other woman in her sixties (I think), a few fifty-somethings, a lot of twenty- and thirty-somethings, and one recent high school graduate. It is quite clear to me that a younger brain is more adept at learning a new language. I understand more than I can say, but when our teacher asks a question, my gray matter freezes up. Honestly, there are times, even with my strength in English, that the curtain drops in my brain when someone asks me a question these days, and I can’t find the word. All the more so in German.

However, I have noticed that some words come more readily than others. For instance, I have an easier time remembering German words for clothing (die Kleidung) than for housework (die Hausarbeit). Clearly, personal interests play a role here. On the other hand, gendered nouns are a real challenge. Why, for example, is a skirt masculine in German (der Rock), a dress neutral (das Kleid) and pants feminine (die Hose)? There are some clues in the spellings, but still. No way out but memorization. Which is a struggle.

Our test includes units on clothing, weather and festivals, as well as grammar for comparisons, favorites, explanations, and what you might wish for. Of all these topics, I particularly enjoyed learning weather vocabulary (being a weather nerd). It helps that many of the words are similar to English. Wind is, well, der Wind (although the ‘w’ has a ‘v’ sound). The sun is die Sonne. Rain is der Regen.

My favorite discovery in this particular chapter, however, was the phrase es donnert und blitzt. Which means (no elegant translation) that it’s thundering and lightening is flashing. This answers a conundrum from my childhood, in hearing The Night Before Christmas, why old St. Nicholas named two of his reindeer Donner and Blitzen. Who knew?

Overnight it may well donnert und blitz, as I write Monday evening. At least, that’s what the weather report says. But I’m glad to have enjoyed viel Sonnenschein this weekend. Now, if I could only clear der Nebel (the fog) that hinders my vocabulary recall, I’ll be all set.

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: Stefan Widua

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