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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Oasis of Calm

Evelyn Herwitz · April 12, 2022 · 1 Comment

Last week, I spent four days on Cape Cod by myself, just to focus on my own writing. It’s the second time in about a year that I’ve given myself this kind of mental and physical space to write. It was a wonderful, productive time, in a beautiful setting, surrounded by nature. I wrote and planned and walked nearby beaches of the Cape Cod National Seashore. Nothing like getting away from all the distractions and cacophony of bad news to reset my mind and soul, think about what really matters—and make my own art. Here’s a taste . . .

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: body-mind balance, managing chronic disease, mindfulness, resilience, travel, vacation

Falling Back

Evelyn Herwitz · November 9, 2021 · 4 Comments

On Sunday we made the big shift, setting clocks back an hour to Eastern Standard Time and befuddling our brains in the process. Wait, the sun is nearing the horizon and it’s only four o’clock? Every year we go through this rigamarole, and every year I feel the darkness settle.

Sunlight in November is precious. I used to hate this month when we turn back the clocks, bringing nighttime all the more near. But in recent years I’ve come to appreciate it, despite too-early sunsets and crumbly brown leaves. The light is stark. It casts bare branches silver by day and coats them gold by late afternoon.

Nowhere is November light more beautiful than on Cape Cod, where Al and I spent the past weekend. We walked beaches at sunset, nature preserves at Noon, rediscovered a beloved bookstore frozen in time since the sixties, ate many good meals, and just enjoyed a much needed break. Here are some of my favorite photos from our trip. 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, resilience, travel, vacation

Course Correction

Evelyn Herwitz · September 7, 2021 · 2 Comments

Our long August weekend in Burlington, Vermont, already seems like months ago. But I’ve been thinking about one of our adventures, a two-hour sailboat cruise on Lake Champlain, ever since.

It was Friday afternoon, hot, humid, perfect weather to get out on the water. A family of four sat at the bow, beneath the jib, and Al and I sat aft, behind the mainsail. When I mentioned to our captain how much I love sailboats, he said, “Would you like to sail it?”

Now, it’s been about 40 years since I’ve taken sailing lessons, but I figured he would be right there, so I agreed. And that is how I found myself taking the helm, gripping the stainless steel wheel, and wondering what exactly I had gotten myself into. “Relax,” said the captain. Sure, I thought, easy for you to say, but I really don’t want to capsize our sailboat with that nice young family up front.

He told me to turn the wheel back and forth to see what happened. As I moved the rudder, the boat shifted direction slightly to left or right, with a momentary delay. It was as if wind and current had to negotiate a bit before our direction was determined. For the next twenty minutes or so, I did my best to sail us safely out of the harbor between the breakwaters and into the huge lake, focused on a cleft between two mountains on the horizon, as our captain instructed.

It was not easy. Wind and current competed constantly, and I had to make many small adjustments of the rudder to keep us on course. To me, it looked like we were zigging and zagging through the water, but the family at the bow seemed to be enjoying themselves, and the captain was not in the least concerned. Al just enjoyed being along for the ride.

When I handed back the helm, the captain attached the wheel to some cables connected to an internal computer, set the course, and the boat effectively sailed itself. But the computer constantly adjusted the wheel back and forth, just as I had, to balance out the tug of current and push of wind. So that made me feel better.

Staying on course is never a straight line.

Every moment of every day, we make choices. We’re buffeted by many options, distractions, demands on our time and attention. It’s easy to go on autopilot in our daily routines, following the familiar course of waking, grooming, meals, work, school, chores, homework, childcare, exercise perhaps, maybe pursuing a hobby or reading a book, Zooming, or just collapsing in front of the TV or computer before bedtime.

As I was sailing on Lake Champlain, gripping the helm, I could feel the tug and pull of water below and wind above. I was acutely aware of how my hands on the wheel controlled the rudder and direction of the boat, how turning it a little too far to left or right would steer us off course. I had to pay attention.

It was not relaxing. And I couldn’t maintain that level of focus for more than twenty minutes on a day when I wanted to just be on vacation. I don’t think it’s realistic for anyone to be fully alert for every waking minute—or even healthy, for that matter. Witness the burnout of our front line workers battling Covid, 24/7, throughout the pandemic, who so desperately need rest and recuperation.

But I do think there is a lot to be said for being more mindful of our actions, how small actions can add up to big ones with significant consequences, for better or worse. For me, and for Jews around the world, today is Rosh Hashanah, the Jewish New Year, a time for introspection about the year past and reflection about how to do better going forward.

It’s been a tough year, navigating through the pandemic, which seems endless. I’m setting my sights on trying to be more conscious of the pushes and pulls that can throw me off, the ways words and worries steer and jostle my actions and those whose lives I touch, and how, with a little more care, a little more attention, I can chart a better course—not only for myself, but for others, known and not yet known.

Sail on, Dear Reader, sail strong.

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: body-mind balance, mindfulness, resilience, travel, vacation

Interlude

Evelyn Herwitz · August 24, 2021 · 1 Comment

Our long weekend in Vermont already seems a long time past, but I have the pictures to prove that we really were there just ten days ago. I’ve never been to Lake Champlain, so we set our sites on Burlington, but also took in the beautiful farmlands and mountains nearby in our travels.

High points of our visit included a sail on the lake (the captain let me take the helm for a while, which is a topic for another post), the Lake Champlain Maritime Museum (where I learned about the very complex history of Benedict Arnold), the Shelburn Museum (yes, that really is a steamboat in the middle of the lawn), Fort Ticonderoga in New York (site of critical Revolutionary War battles), and the Von Trapp Greenhouse and demonstration garden in Waitsfield, Vermont (yes, those Von Trapps). Oh, and the food was truly amazing. 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: mindfulness, resilience, travel, vacation

Time for a Break

Evelyn Herwitz · August 10, 2021 · 2 Comments

No big travel plans for this summer, once again. But we’re trying to make the most of day trips. Two weekends ago, we spent a beautiful day in Rockport, Massachusetts. I hope you enjoy the view.

I’ll be taking a break from this blog next week, back on August 24. I hope you’re finding time to savor good weather, travel safely, and relax, too. 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.

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

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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

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I am not a doctor . . .

. . . and don't play one on TV. While I strive for accuracy based on my 30-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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