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Reflections on the Messy Complexity of Chronicity

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body-mind balance

Enter Fall

Evelyn Herwitz · September 19, 2023 · Leave a Comment

It is rainy and chilly and dreary as I write on Monday afternoon. Here in Central Massachusetts, we were fortunate to avoid the worst of Hurricane Lee over the weekend, and the rest of the week looks sunny. But I’m feeling the chill in my hands today, knowing that fall officially begins this Saturday.

Already, the days are notably shorter, the transition even more striking since we came back from the Baltics, where the sun sets later because it’s farther north.

And so, it’s time to make my annual adjustment, mentally and physically, to inevitable colder weather. I should be used to it by now, but I always hate to bid summer adieu. Time for lined leggings and sweaters and wrist-warmers, heavier coats and gloves and hats, more effort to get dressed and out the door.

Sigh.

At least there is fall foliage to look forward to. That, and crisp air, and fewer mosquitoes, and the way that autumn light etches shadows. Even as leaves begin to drop and trees harden off for winter, new buds are forming. My hands will adjust as I remind myself: Only three more months until the pendulum swings and the days grow longer, once again.

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, Touch Tagged With: body-mind balance, finger ulcers, managing chronic disease, mindfulness, Raynaud's, resilience

Barbie Land

Evelyn Herwitz · August 15, 2023 · 4 Comments

On Sunday, my older daughter and I went to see Barbie, which, in case you’re not into pop culture, is a movie by director Greta Gerwig about the iconic fashion doll’s existential identity crisis when she confronts the “real” world. Starring Margot Robbie as Stereotypical Barbie and Ryan Gosling as Ken, the film opens with an homage to Stanley Kubrick’s 2001: A Space Odyssey and romps off from there. It’s a hoot. We had a great time.

There’s been a host of critics who’ve reviewed the summer blockbuster, predictably commenting from either side of our culture divide about Gerwig’s feminist message. But I’m not going to get into that here. What I want to write about is one of the underlying notions of the film, that Barbie has been an aspirational toy for young girls since the ’60s, with all kinds of Barbies cast as everything from astronauts (1965, way ahead of NASA) to astrophysicists. Apparently toy-maker Mattel has created more than 200 jobs for Barbie, including U.S. President.

Years ago, when my sister and I played with her Barbies and my Ken doll, that phase of Barbie Land did not yet exist. This was in the early ’60s. We created doll rooms in the bottom three shelves of a bookcase that our dad had built years prior, originally to store his huge LP record collection. The furniture didn’t fit the dolls’ proportions, but we didn’t care much. We were more interested in the family intrigue that my sister would narrate, particularly the conflicts between ponytail Barbie (one of the originals, and yes, she came dressed in that black-and-white strapless bathing suit and sunglasses) and bubble-cut Barbie (bouffant blonde hair), whom my sister named Alice and deemed Barbie’s evil twin.

I could not keep up with my sister’s plots and offer my own. She was an avid reader and two years older, and she came up with all kinds of story lines that were beyond me. I don’t recall much else, other than I preferred to change Ken’s outfits (already, I loved fashion) more than figure out what was going to happen next.

And the clothes were fabulous. Back then, they were made from beautiful fabrics, satin and wool and cotton, with tiny working metal zippers and miniature buttons. No synthetics. Real pleats in Barbie’s tennis skirt and satin stripes on Ken’s tuxedo.

My Ken was not one of those dolls with the plastic molded blonde hair. No, he had brown flocked hair, which unfortunately rubbed off when I struggled to put on his red football pads under his red-and-white football jersey. So I occasionally would repair his bald spots with a burnt sienna Crayola crayon, which seemed to do the trick.

Eventually, I got Skipper (Barbie’s little sister), and she was fun to play with, but Ken was always my favorite. My sister got Midge (Barbie’s best friend), but unlike the later version of that Mattel doll, who apparently was supposed to be pregnant, this Midge had the same voluptuous figure as Barbie, reddish brown hair with bangs, and freckles.

Our dolls could not move their knees or elbows. They could wave their arms up and down and do splits, but when they sat, their legs went straight out. Often, they’d fall to one side, seated.

It didn’t matter. I enjoyed the clothes, and my sister made up dramatic, entertaining stories that had nothing to do with Barbie’s careers. And when the time came to move on from Barbie Land, we packed each doll and outfit into individual plastic bags and stored them carefully. I inherited the collection, with my sister’s blessing. Our daughters—especially our younger daughter—enjoyed playing with them. And now they are stored in a large plastic box under a bed. I’ve been wondering if it’s time to sell them, given the Barbie craze. But I’m not sure if I’m ready to let them go.

P.S: Just a note, if you’ve read this far (thank you!), that I’ll be taking a break for the next three weeks. Enjoy the rest of August and see you in September.

Image: “Barbie’s first clothing designer Charlotte Johnson posing with 1965 Barbie doll model,” by Nelson Tiffany, May 13, 1964, UCLA Libary Digital Collections.

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, Touch Tagged With: body-mind balance, mindfulness, resilience

Rhapsody in Teal

Evelyn Herwitz · August 8, 2023 · 8 Comments

I haven’t sewn a garment for myself in quite a while, not since December 2021, to be precise. That project was an alpaca wool jacket, which came out fine, but I haven’t worn it too often because the fabric is a bit itchy. Oh, well. One of the challenges of making your own clothes is learning to pick the right fabric for the right project.

I have a lot of fabric in my stash, accumulated over decades. This is a common challenge for people who enjoy sewing—inspiration and purchase, followed by lack of time, energy, or whatever excuse to actually sew the garment. Call me guilty, as charged. But recently, I decided that if I wasn’t going to sew something or make use of all those fabric scraps from prior projects, I should at least find a way to responsibly recycle them.

Turns out our composting service will recycle textiles for a minimal fee. So I dug through my fabric stash to see what to eliminate. Not easy. I have a lot of nice textiles. Still, it was time to be realistic. After filling a bag for recycling with scraps that I will never use, I examined several yards of beautiful teal rayon. I must have purchased it not long after Al and I married, so it’s nearly 40 years old. But still in excellent condition.

Then I dug through old patterns, many of which I will never sew because I no longer like the styles, and bagged a bunch to recycle. But I found one, a simple caftan, that held promise for that gorgeous fabric.

Rayon is a tricky fiber. It drapes beautifully, but ravels easily and is slippery to sew. With two thumbs in bandages at present and limited dexterity, I knew it would be a challenge. That’s probably why I’ve avoided it all these years.

I read up on sewing techniques for rayon and set to. First I zigzagged the ends to prevent raveling, washed the rayon on delicate to pre-shrink, then air-dried it and pressed it on low (no steam). After testing the pattern with left-over muslin for the front and gingham for the back (more leftovers), I made some adjustments. Then I went to the fabric store and bought a better rotary blade cutter than my old ones, which I could no longer hold properly, some rayon thread, and some extra sharp needles for my sewing machine (recommended for rayon).

The rotary cutter was worth it, because I was able to cut out the pattern quickly and neatly, without hurting my hand. Theoretically, you’re not supposed to use pins other than those intended for silk, or they’ll leave permanent holes in rayon. I tried mini binder clips to hold the seams when I stitched, but they were too clunky and hard to open and place properly. Turns out, fortunately, that this fabric was fine with pins.

I took my time. I experimented with seam binding, but that didn’t work. I couldn’t serge the seams, because the serger destroyed the delicate fabric. So I stitched the seams on my trusty old Huskvarna, trimming them and zig-zagging the edges. For the neckline binding, I had enough fabric to cut bias strips, found some stretchy iron-0n interfacing in my stash, and made custom bias tape, which worked great.

Finishing the sleeves and hem was the hardest part of the project, because the pattern called for pressing under a quarter-inch of the edge, then folding it again and stitching down. Like I said, the fabric is slippery and I don’t have the ability to nudge a narrow, raw edge with my fingertips, which no longer exist. Stitching a quarter inch from the fabric’s raw edge gave me a guide for the first fold, which I pressed. Then I made the second fold, pinned and lightly pressed. But the big aha was realizing I could top-stitch the hem from the wrong side, thus easily controlling the narrow folded edge, and no-one would know the difference.

The finished dress earned a “Wow!” from Al, the desired response. I’m really pleased with it. It’s cool and comfy and fun to wear. All these years later, I finally found the right project for that beautiful teal rayon. I can still sew. And there is so much left in my stash. . . .

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, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, resilience

Off Kilter

Evelyn Herwitz · August 1, 2023 · 4 Comments

I lost a friend last week. Joanna battled a deadly form of cancer, mesothelioma, for more than three years, with incredible courage, strength, pluck, and humor. She survived a high risk research trial this past spring that initially seemed to shrink her tumors, only to have them rage back within weeks. She had just begun another research trial, but the cancer had progressed too far. She died, surrounded by loved ones, Wednesday night. She was only 47.

When I learned the news from her husband’s heart-wrenching post on her Caring Bridge journal Thursday morning, I felt gut-punched. As her rabbi said at her funeral on Sunday, how could someone with such a powerful will to live be gone? It made no sense. It felt so wrong. A friend wrote in the comments to her husband’s message that a light had gone out in the universe. I felt the same.

I met Joanna nine years ago in a Jewish text study class. We were exploring Mussar, teachings and practices about different “soul traits,” such as compassion, patience, gratitude, order. As is the way in Jewish text study, we each had a study partner, and Joanna and I became a pair.

One afternoon in November, the two of us went to the local art museum to dig into the week’s soul trait, balance, which involves moderation, finding the middle path between extremes. Being not only a ballerina, artist, and yogi, Joanna also held a PhD in astronomy. As we wandered through the galleries, seeking ways to understand the meaning of balance, she brought a unique set of ideas to our conversation. Fortunately, I had written everything down in a journal, which I found Sunday after returning home from her funeral.

Rereading those notes, I felt as if she were still there, telling me just what I needed to hear after days of feeling so off kilter—that balance is not a static state. When you balance on one foot, it’s a process of constant readjustments, minuscule shifts in muscle and bone. Maintaining balance requires the offsetting of opposing forces. Physics dictates that both are necessary. Gravity, explained Joanna, causes all planets to be spherical, because gravity pulls mass toward a central point. And, we concluded, centeredness is essential for wholeness.

My notes of our conversation also reminded me that balance does not mean moderate amounts of everything. Achieving balance is different for each individual, a little of this, a lot of that, a combination of all factors in their proper relative proportions. And it’s not, by definition, symmetrical. The best example: a Calder mobile.

Unlike Joanna, who could balance so gracefully en pointe and hold perfect yoga poses, I can barely stand on one foot without falling. But I know exactly what she meant by all the tiny muscular adjustments that my foot and leg try to make to hold still. Balance is most certainly not a steady state. Even Calder mobiles flutter and twirl with the slightest movement of air.

In the weeks and months to come, when I think of Joanna, I’ll be thinking of all that I learned from her as I try to regain my sense of balance. She was a great teacher, at heart. She still is. May her memory be for 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: Colton Sturgeon

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

Art in the Park

Evelyn Herwitz · July 25, 2023 · 2 Comments

What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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 Tagged With: body-mind balance, mindfulness, resilience

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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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