Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

What Comes Next, Comes Next

· · 7 Comments

The election is over. It is not the result I had hoped for. For now, I am just trying to keep my head on straight and focus on what’s in front of me.

And so, I took a walk Sunday afternoon, in the sharp, unflinching November light that reveals each detail of bark and lichen and crumbled leaf. A friend had mentioned a lake not far away that you can circumnavigate via a pontoon bridge that connects to a woodland trail. The weather was pleasant, not too cool, not too hot. And I needed to clear my head.

It took me about 45 minutes to walk the full route. Water gurgled as it lapped the pontoon bridge, a popular attraction for families pushing strollers. A gaggle of teen boys asked me to take their photo against a backdrop of sun-illumined lake. Children ran ahead of their parents, delighting in the novelty of walking across water. Others whined until they were picked up and carried by moms, “just for a little while.”  The woodland walk was less traveled, peaceful, more conducive to sifting and sorting my emotions.

What struck me most, however, along the whole route, was the number of different languages I overheard. That, and the friendly greetings of strangers. Whatever the outcome of this election, we are a big-hearted country made up of people from all over the world who call America home. Many of us, myself included, are children of immigrants and, yes, refugees. Whatever happens, we must remember that. Our diversity, our generosity, our kindness—these are our true strengths.

Here are some photos. Hope you enjoy.

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.

Seeking Serenity

· · 2 Comments

We’re enjoying a short spate of glorious weather here in Central Massachusetts—lots of sunshine, azure skies, trees cloaked in flaming colors, comfortable days and crisp nights. A few days ago, I woke early and noticed that the moon had not yet set in the west. It glowed like a golden spotlight in the soft dawn, before the sun had risen. Just beautiful.

I’m trying to stay focused on these daily wonders and not go down the rabbit hole of my iPhone—all too tempting during this fraught run-up to the presidential election on November 5. I find it hard not to read everything I can about the potential outcome, all the twists and turns of the final weeks of campaigning, in a vain hope of divining the result ahead of time. It’s ridiculous, I know. Still, I scroll.

I am deeply, deeply worried about the outcome.

And so, I pray every day to find the calm in the eye of the storm. Maintaining serenity is the only way for me to think clearly. Not easy to do right now. But it’s also the only way to keep myself healthy. Meditation helps. So does taking walks in beautiful weather. And reminding myself of all the many, small miracles of existence that are so easy to take for granted.

So I pass this along to you, Dear Reader, in hopes that it will help you to find your own peace of mind in these complex and chaotic times. 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.

Once in a Blue Moon

· · 2 Comments

If the skies are clear tonight where you live, you’ll have a chance to see an unusual astronomical phenomenon: a full moon for the second time in one calendar month. It’s called a blue moon, although the moon won’t actually look blue. More like a light tan. Still, the rare occurrence—which happens only every two or three years—is a metaphor for anything that happens, well, once in a blue moon.

Not only is this a blue moon, it’s a seasonal blue moon, because there will be four, not the usual three full moons during one season. It’s like getting an extra scoop of ice cream for free.

But wait, there’s more! This blue moon is even more special, because it’s also a supermoon, which appears to be larger than normal, because the moon is closer to the Earth than normal.

Super blue moons are even rarer than seasonal blue moons. According to NASA, the next convergence of a blue moon and a supermoon  won’t happen until January 2037.

The peak convergence was last night, Monday, but the phenomenon will still be visible to the naked eye through early Wednesday morning.

All of which is to say, in addition to record heat, crazy extreme weather, and more than enough to worry about, Nature also brings us some beautiful, unexpected gifts. Savor the magic.

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: Kian Lem

What I Have in Common with Simone Biles

· · 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.

Olympic Feats

· · 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.