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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

What I Have in Common with Simone Biles

Evelyn Herwitz · August 6, 2024 · 4 Comments

My favorite unit in high school gym class was gymnastics. Not that I was any good at it. Decked out in our light-blue gym uniforms (one-piece cotton bloomers with a snap front that were the antithesis of style), I would attempt a simple vault over the horse, try to calm my fear of heights as I walked on the balance beam (in sneakers!), and swing from the uneven bars. The cool girls could do a penny drop. Not I.

Even still, I enjoyed the challenge (except the beam). Maybe because I was just competing against myself and not in my usual role as the weak link in a team sport. Maybe because it made me feel strong. My one big accomplishment in my senior year was clambering up a thick rope to the high gym ceiling, something I never expected to be able to do.

Maybe that’s why gymnastics has always been my favorite part of the Summer Olympics, especially watching young women achieve seemingly impossible feats of strength and coordination. Even if I could never do that myself, I thrill at their achievements. This year was supercharged by Simone Biles’s triumphant return. What a marvel to behold!

Much as I admire Biles for her extraordinary athleticism, I admire her all the more from what I learned in a profile in The New York Times: that Biles and I share a particular love—of turtles. As a young athlete, she went at her own, unique pace to build her repertoire, not caving to unrealistic goals set by coaches. She knew herself and what she needed to learn and grow, in her own time. Her mother, Nellie, called Simone her “little turtle.” According to the article, Nellie used to tell her, “Don’t worry that you are moving slowly. Just be sure of what direction you are going in.” Before every meet, she would give Simone a tiny porcelain turtle. Others picked up on the theme, and she now has a huge collection.

I, too, have a collection of all kinds of turtle figurines. This started when I was a marketing director at a small New England college. I used to give little plastic turtles to my staff as a reminder to take the time to do the job right, rather than rushing and having to spend twice as long fixing it. This guidance was deeply appreciated, especially in a pressure cooker environment rife with unrealistic demands.

Over the years, family and friends have added to my collection, which resides on the bookcase in my home office. I am known for fawning over turtles in their natural habitats. I remind myself that often the best way to solve a problem is to approach it as a turtle, especially when it comes to figuring out the plot in the novel that is bedeviling me at present. Or managing yet another digital ulcer. Turtles have become my go-to metaphor for resisting social and cultural pressure to always be doing, busy, rushing, as a measure of self-worth and accomplishment.

Biles astounds us with her superhuman athleticism, but she became a GOAT (greatest of all time) gymnast by taking her time to get there, including her difficult and courageous decision three years ago to drop out of the Tokyo Olympics when she knew she needed to stop. She draws on her own mental health struggles and early years in foster care to promote the non-profit Friends of the Children, which supports mentors of foster children and other kids at-risk, at an annual international gymnastics invitational in Houston. Sales of a toy mascot help to raise money for the non-profit.

It is, of course, a turtle.

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: anxiety, body-mind balance, managing chronic disease, mindfulness, resilience, stress

Olympic Feats

Evelyn Herwitz · July 30, 2024 · Leave a Comment

For the past few evenings, I’ve been watching the Paris Olympics the old fashioned way, on NBC. I refuse to purchase yet another streaming service, even as Peacock has the comprehensive schedule and streams real time and recorded events. Though I must admit, it’s tempting to gain access to real competitions instead of a curated summary that excessively favors coverage of US athletes and is interrupted every few minutes with commercials awash in treacle.

On the plus side, all those commercials give me ample opportunities to do my bedtime routine without missing anything.

Mostly, however, I’m in awe of what these amazing athletes can accomplish. And a bit envious of their perfect, young, strong bodies. What would it feel like to swim like Torre Huske and Gretchen Walsh, who clinched gold and silver on Sunday in the Women’s 100m Butterfly, finishing within split seconds of each other? Or to twirl in the air like the gravity-defying gymnast Simone Biles?

I was never much of an athlete. Correction: I was never an athlete, nor did I aspire to be one. I just wasn’t that coordinated or strong as a kid, and I found sports competitions stressful. Only once can I recall the thrill of winning a swimming race in the lake by our house. We were at some kind of summer neighborhood party, and I beat out all the other preteens in a race to the raft and back. I won a little red and purple paper flower award, and it felt great. But not great enough to get serious about swimming or any other form of athletic competition.

Sometimes I wonder, had I been more rigorous about exercising in my youth, would I have been able to avoid scleroderma. Not that there is any known connection between exercise and this strange disease. And athleticism is no guarantee of good health, though it certainly helps. I was very moved by the backstory of US gymnast Suni Lee, who has overcome debilitating kidney disease to compete in Paris. Even more than whatever medals she is likely to win for Team USA (she was all-around women’s gymnastics champion at the 2021 Tokyo Olympics), I think she already deserves a gold medal for her incredible grit. Same goes for Simone Biles, who confronted her deepest fears and insecurities about competing after she withdrew from the Tokyo Olympics four years ago, to once again dazzle the world with her truly extraordinary strength, coordination, and grace.

And that’s really the point. I have never been athletic—by choice and by genetics—and scleroderma certainly has put real limits on what my body can accomplish. But within those limits, there is still a lot that I can accomplish. It’s all about not giving up in the face of a daunting disease. It’s all about where I choose to place my focus—mental, emotional, spiritual, and, yes, even physical. Olympic feats are not limited to the Olympics.

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, managing chronic disease, mindfulness, resilience

Crossroads

Evelyn Herwitz · July 16, 2024 · 2 Comments

I find it difficult to write about anything, given the weekend’s terrible news here in the U.S. So I share with you an excerpt from President Biden’s wise words Sunday night. Whatever your politics, we all need to take this to heart. Period.

Tonight, I want to speak to what we do know: A former president was shot. An American citizen killed while simply exercising his freedom to support the candidate of his choosing.

We cannot—we must not go down this road in America. We’ve traveled it before throughout our history. Violence has never been the answer, whether it’s with members of Congress in both parties being targeted in the shot, or a violent mob attacking the Capitol on January 6th, or a brutal attack on the spouse of former Speaker of the House Nancy Pelosi, or information and intimidation on election officials, or the kidnapping plot against a sitting governor, or an attempted assassination on Donald Trump.

There is no place in America for this kind of violence or for any violence ever. Period. No exceptions. We can’t allow this violence to be normalized. . . .

Disagreement is inevitable in American democracy. It’s part of human nature. But politics must never be a literal battlefield and, God forbid, a killing field.

I believe politics ought to be an arena for peaceful debate, to pursue justice, to make decisions guided by the Declaration of Independence and our Constitution. We stand for an America not of extremism and fury but of decency and grace.

All of us now face a time of testing as the election approaches. And the higher the stakes, the more fervent the passions become. This places an added burden on each of us to ensure that no matter how strong our convictions, we must never descend into violence.

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: Kristaps Ungers

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

Hand-off

Evelyn Herwitz · July 2, 2024 · 2 Comments

I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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

Too Darn Hot

Evelyn Herwitz · June 25, 2024 · Leave a Comment

This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. Be well.

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: Library of Congress

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, heat wave, managing chronic disease, Raynaud's, 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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Recent Posts

  • Taking a Break
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  • And Just Like That . . .

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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