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Reflections on the Messy Complexity of Chronicity

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body-mind balance

Mud Puddles

Evelyn Herwitz · March 2, 2021 · Leave a Comment

I read somewhere that March 2020 came in like a lion and stayed. So here we are, a very long and difficult year later, and the wind is gusting outside. I take a walk on a late Monday afternoon, before the sun sets, and the chill catches me by surprise. But I keep on walking. My flannel winter mask helps to warm the air I breathe.

When there’s no one else nearby, I lower my mask to inhale more freely. As soon as I see or hear someone approaching, I raise it again. I’ve gotten quite adept at moving to the opposite side of the street as another walker appears along my path. It’s all part of our learned choreography in Covid Time.

Most people I pass wear masks, too. And most everyone waves or says hello—more so than in the Before Time, when we took passersby for granted. Now, it feels all the more important to acknowledge each other when we can see only eyes.

Where snow is finally receding, mud puddles glisten in the late afternoon light. The ground looks like chocolate pudding. I inhale the earthy scent and notice a few matted blades of green where lawns have emerged from beneath their white blankets. Mourning doves coo as shadows grow long.

It’s after five o’clock when I return home, grateful for a warm kitchen, but glad that I stretched my legs and worked out the strain in my lower back from sitting too long at my computer. The sun still illuminates scudding clouds with a golden glow. I marvel that I can walk this late in daylight.

Spring is less than three weeks away, March 20. Three days later, I get my second Moderna vaccine. Then comes Passover. I mark time with ancient rituals, miraculous milestones, and the spinning of the Earth.

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: Jock Ocularic

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, COVID-19, exercise, managing chronic disease, mindfulness, resilience

Dormancy

Evelyn Herwitz · February 16, 2021 · 4 Comments

There was a table set out under a tree in front of the house, and the March Hare and the Hatter were having tea at it; a Dormouse was sitting between them, fast asleep, and the other two were using it as a cushion, resting their elbows on it, and talking over its head.

—Lewis Carroll, Alice’s Adventures in Wonderland

It is mostly white outside. Although recent snows have melted or sloughed from the yews outside my window, the ground is still hidden beneath a thick coat. The crust is soggy with Monday’s mist. Soon it will sparkle and crunch. We expect a half-inch of ice Tuesday along with another few inches of snow.

February, according to the poem we used to recite as kids, is supposed to bring the rain and “thaw the frozen lake again.” Not so anymore. While it seems counterintuitive, climate disruption caused by global warming has triggered a polar vortex that is sweeping the U.S. with record-breaking cold, ice, and snow. Nothing to do but wait it out.

In the midst of all this waiting—for spring, for a vaccine, for sanity and comity to prevail in our troubled nation—I am reading a wonderful book of essays by Katherine May called Wintering: The Power of Rest and Retreat in Difficult Times. Writing through the course of a hard year, when she had to leave her faculty position to deal with an uncertain illness, May reflects on all the ways that slowing down, withdrawing, and quiet are essential to the cycle of renewal.

She writes of the buds on trees that form in late summer and remain dormant throughout winter, conserving energy for spring; of ephemeral traces of the aurora borealis that hover in the sky above the Arctic Circle; of seeing sunrise at Stonehenge on the winter solstice and what it means to pray; of the hibernating habits of dormice.

The latter particularly caught my fancy. I did not know that dormice conserve nutrients in their tiny bodies after gorging in late summer and autumn, then, in October, curl into little balls no bigger than a walnut, drop their body temperatures to match their surroundings and become dormant as tree buds, waking slightly every ten days to flush toxic wastes from their systems, and not fully rousing until May. They are also simply adorable. And endangered by climate change that is shrinking their habitats.

We have much to learn from the natural world about appreciating the gift of darkness and cold, which cues us to rest more, to ease the hectic pace of our incandescent-light-filled-homes and offices, to reflect and see and wonder. The pandemic has forced our collective hand. We’ll all be glad when it’s safe to go out. We’d be wise to take the lessons of this long hiatus with us when we do. But for now, with another winter storm on the way, maybe it’s just fine to curl up in a ball, and sleep, and dream.

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.

Images: Hibernating hazel dormouse found in a birdbox in Central Germany, March 2016, by Zoë Helene Kindermann, Wiki Commons; Dormouse in August, Aosta, Italy, August 2005, by Hectonichus, Wiki Commons.

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

Tick-Tock

Evelyn Herwitz · February 9, 2021 · 1 Comment

Today’s announcement: I have entered the world of wearable health tech. This was not planned. In fact, it’s something I’ve avoided, because I didn’t want to obsess about how many steps I’ve taken each day. However, I learned some things from my heart study that made this a priority. So I am now wearing my new Apple Watch, which has already proven its worth.

Back in December and early January, as I’ve written previously, I did a three-week Holter monitor study, because my arrhythmia had been very active in recent months. And, as expected, the study validated my observations, fortunately with the reassuring news that my annoying arrhythmia is still within the normal range of abnormal, as it has been for decades. A nuisance, more than anything.

However, the study also recorded a more concerning development, one 15-second episode of a Type 2 Heart Block. There are two types of Type 2 Heart Blocks, and true to form, mine was the more complicated, which involves a blockage of certain electrical signals so they don’t transmit properly and the heart slows down. In my case, I had no symptoms of my heart rate slowing, because one part of my heart doubled the number of electrical signals it was sending, but only half of those transmitted, so the result was my normal heart rate.

This was rather disturbing news. I’ve known for years that scleroderma can cause changes to heart tissue over time. I had a long discussion with my cardiologist about this several weeks ago, and we agreed that I needed some way to keep monitoring my heart in case I do experience episodes of sudden light-headedness or dizziness going forward. This has happened to me on occasion over the years, but even though I felt weird, it was so infrequent that I just let it pass. The options were: (a) a mini portable ECG monitor that I could use to record readings and then email reports to him; (b) an Apple Watch, which has an ECG app that I could use to do the same; or (c) a small chest implant that would monitor my heart for three years.

The implant was a non-starter. The mini portable ECG was the most affordable, but a nuisance to carry with me all the time. So, I went for the watch. Fortunately, I could afford it. Not cheap, but a powerful little computer to wear on your wrist with many useful features.

I put the system to the test recently, when I got quite stressed one Friday evening when I was trying to reach Al and could not get hold of him (it all worked out, but it was one of those days). My arrhythmia kicked up big time, so after Al got home and all was well again, I took several ECG readings on my new watch. I picked the first and the last when I felt back to normal, and emailed the PDFs from my iPhone to my cardiologist with a note. Within a half hour, he wrote me back that these were the “okay” kind of extra beats, so no problem, but to keep him posted. We’re catching up again this Friday.

This was very reassuring. I’ve had no cause to send any more ECGs since then, but I am now learning to use my watch to track exercise. It’s always been clear to me that my heart feels better when I walk, but I’ve been avoiding it because of the cold weather. Now, however, I have a big incentive to get moving. And I have a very cool way to keep track of steps, exercise, calories burned, and general movement. Already, I’ve pushed myself out the door for walks that I wouldn’t have taken before all of this. I’ve tried out a fitness routine. And I do feel a little better for it all, so far.

It’s been a month of coming to terms, or, at least, beginning to come to terms with the fact that this very ornery disease still has some curve balls to throw at me. I have lived with scleroderma for nearly 40 years, now. I’ve been fortunate that my disease has always moved slowly enough for me to learn how to compensate. With the help of some amazing tech and a wonderful cardiologist, I intend to continue doing just that.

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: anxiety, Apple Watch, arrhythmia, body-mind balance, managing chronic disease, resilience

Ray of Hope

Evelyn Herwitz · February 2, 2021 · 1 Comment

In the New York Times’s Morning Brief on Monday, editor David Leonhardt made a really important observation about the Covid vaccines: they’re more effective than we might think. He notes that the percentage effectiveness data we’ve seen so far—about 95 percent for two shots each of Pfizer and Moderna—sounds good but not perfect. But Leonhardt explains that effectiveness data actually understate the true impact of the vaccines.

When effectiveness data are calculated, mild cases post-vaccination are counted as failures. But a mild case of Covid, at least as far as we know, is more like a typical case of the flu. Leonhardt doesn’t address the unknowns of long-term effects of the disease, regardless of severity, which remain a black box at this time. But his point is that, even if you contract the virus after vaccination (low probability, at least, for the first two vaccines to be approved by the FDA), the chances of contracting severe, hospitalizing, deadly Covid is pretty much nil.

As this article about the Moderna vaccine in Science puts it, Moderna’s vaccine “had 100% efficacy against severe disease.” That same assessment is echoed in this article by Harvard infectious disease specialist Paul Sax in The New England Journal of Medicine. Writes Sax: “First, the [Pfizer and Moderna] vaccines prevented not only [almost] any disease due to SARS-CoV-2, but—quite importantly—severe disease. Prevention of severe disease could convert Covid-19 from the global threat it is now into more of a nuisance, like the common cold.” He also notes that “some protection became apparent just 10 to 14 days after the first dose.”

Even the yet-to-be-approved Johnson & Johnson vaccine (66 percent effective) and Novavax vaccine (89 percent effective) need to be understood in the same way. While data indicates that more test subjects contracted Covid than with the Pfizer and Moderna vaccines, the lower effectiveness percentages don’t communicate that these vaccines still prevented severe disease among those who got Covid post-vaccination.

So, as we all hunker down, awaiting our turn for a shot, amidst scary news of the new super-spreading Covid variants, there’s good reason to feel more optimistic. And we can each help others stay healthy, after we’re fortunate to have been vaccinated, to keep wearing those masks to avoid any chance of spreading mild or symptom-free Covid to others who are not yet protected.

It may sound trite, but it merits repeating: We are truly all in this together.

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: Thom Holmes

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, COVID-19, managing chronic disease, resilience

Liminality

Evelyn Herwitz · January 19, 2021 · 4 Comments

For a few minutes on Monday afternoon, clumps of snowflakes swirled in the air, large as silver dollars. I was scrolling through my Twitter feed while eating lunch, checking for news of violence in D.C. or state capitals. There wasn’t any, thank goodness. The snow was brief, and did not stick.

I feel as if I am spinning like those snowflakes, neither here nor there, caught in liminal time and space, somewhere on the invisible threshold between states of being.

I go about my work and meetings on ephemeral Zoom, catch up on correspondence with friends and family, tell Al to “be safe” when he goes out to see his clients and do their grocery shopping.

I recheck our state’s Covid website to see if there are any new announcements about vaccine availability. There are none. I check the time and count the hours until Wednesday’s noontime Inauguration.

I look at surreal images of our nation’s capital, thick with masked men and women in camouflage, carrying arms—this time, in service of our country—and am both relieved and so very sad that it has come to this.

I remember to meditate before breakfast, but forget to walk after lunch. Daylight wanes as another 24-hour cycle wheels past or through or into memory.

My memory isn’t as sharp as it once was, so I write, so I know that I really was here, in this strange time and place that will someday be the subject of countless doctoral theses and historical treatises. I imagine colloquia and documentaries and debates, far into the future, about the forces that shaped our present, when people will wonder how we let it happen. They will have the advantage of knowing how it all turned out. But we must remain, here, and wait, and wait.

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: Darius Cotoi

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Filed Under: Body, Mind, Sight Tagged With: body-mind balance, COVID-19, mindfulness, resilience, stress

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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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