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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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mindfulness

Thankfully

Evelyn Herwitz · December 1, 2020 · 1 Comment

Thanksgiving last Thursday was for us, as for so many, a shadow of celebrations past. But it was still lovely and meaningful, in its own way. Our eldest daughter, who also lives here in Massachusetts, was able to join us, even as our youngest had to stay at home out-of-state. Still, we enjoyed an extended family Zoom and watching a movie together-while-apart in the evening. No substitute for in-person, but I’m grateful that we all stayed safe. I cooked a vegetarian, gluten-free feast, with sous chef assistance from our daughter, including this excellent recipe from The New York Times for “Roasted Cauliflower Gratin with Tomatoes and Goat Cheese,” which I highly recommend.

The Times on Thanksgiving also featured a wonderful compilation of reader contributions of six-word gratitudes. Here are ten of my own:

COVID-19 vaccines: Light at tunnel’s end.

All still Corona-free. Knock on wood.

Okay, otherwise, with no digital infections.

Supermarket cashiers risking health for us.

Ample food. Loving family. Roof overhead.

Longer days in just three weeks.

Virtual, imperfect, but meaningful Zoom togetherness.

Good neighbors who wave behind masks.

Local election officials who defend democracy.

You, Dear Reader, for being here.

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: Adam Nieścioruk

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

Constancy

Evelyn Herwitz · November 17, 2020 · 4 Comments

My mother used to have a saying, “This, too, shall pass.” I suppose it calmed me when I was a child, but as a teen and young adult, it used to drive me crazy. As is the way with mothers and daughters, I took this as her default dismissal that she didn’t take my feelings seriously. Looking back, I suspect that on some occasions, she was speaking from the wisdom of experience, and on others, she just couldn’t deal with my angst du jour, legit or not.

Lately, however, those words have resurfaced in my mind’s echo chamber. As the pandemic surges and the infection rate rises exponentially, as our nation roils in the election’s aftermath, I have found some comfort in my mother’s saying. After all, she lived through Weimar Germany and the rise of Hitler, transplantation to a new nation with a different language and culture, World War II, the McCarthy era, the Cuban Missile Crisis, civic disruption in the ’60s, Watergate . . . the list goes on.

We were most fortunate, in the midst of all that 20th century strife, to enjoy a safe and comfortable middle class life. And I am very grateful, now, to have the luxury of being able to reflect on our nation’s turmoil without experiencing a major disruption of illness or unemployment or the risks of financial ruin in my own family. This is not the case for all too many of my fellow citizens, which is both tragic and utterly unacceptable.

Nonetheless, especially when I go outside, I find reassurance in the natural rhythms of the world, that there are constants that continue to ground us all. The trees are mostly bare, now, in my neighborhood, their brown and crumbled leaves raked into huge mounds that line our streets. The air is crisp; the light, November stark. It is a comfort, even as the days grow short again, to know that the earth still spins on its axis and the seasons, albeit altered by a warming planet, still turn.

Last weekend, as we walked the Cape Cod National Seashore, I found peace in the ocean’s crash and susurrus, the crunch of sand beneath my sneakers, a gem of green sea glass. On Saturday night, we returned to the beach and gazed at the stars. There were Orion and Cassiopeia, the star cluster Pleiades in Taurus, and the russet pinpoint of Mars, all where they always are.

There were days in the past week when I was feeling so anxious about the power of false narratives that I wondered if my health would be affected. Then I finally told myself I simply couldn’t keep going down that rabbit hole. So, even as I still doom scroll all too often, I take my walks, and I read about Nature, and I remind myself, even as none of us knows what is on the other side—this, too, shall pass.

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: Shelby Deeter

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

Respite

Evelyn Herwitz · November 10, 2020 · 1 Comment

To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for 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.

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

As We Wait

Evelyn Herwitz · November 3, 2020 · 1 Comment

There’s a chill wind blowing as I write on Monday afternoon, and it feels more like January than the first week of November here in Massachusetts. We had six inches of snow last Friday, enough to pull down some tree branches that are still in leaf. But we made the most of it, and built a snowman. It’s still barely standing.

It was Al’s 70th birthday on Halloween, the kind of milestone you want to mark with a big bash. Instead, I made him a half-hour video montage with tributes from family and old-time friends, we had a Zoom family party, and an elegant take-out meal plus a delicious cake with chocolate mousse and raspberry preserve filling. The day felt truly festive, despite pandemic restrictions. Al, being Al, delivered candy treats to all the neighbors because there was no trick-or-treating in our fair city this year.

On Sunday, we at long last had our lower roofs repaired, a project that had been stalled for two months, first by weather, then by our Covid scare. No more leaks in my office every time it rains, or in the kitchen around the very old skylights. The new ones are solar-powered and close automatically when it rains, if we forget. I’m grateful this is finally done and we’re ready for winter.

The sky is a brilliant blue, and the sun is shining.

Whoever wins our national election, I must believe that we’ll find our way through. We have many searing problems to solve, a pandemic to overcome, far too much fear and misunderstanding. But there is also a wellspring of love and good will in this country. I’m praying for our better angels to prevail, for the ebb and flow of daily life to be all that’s remarkable, once again.

If you have not yet voted, please do so before the polls close. Be safe, stay sane, hug your loved ones, be kind to your neighbors. We won’t know the answer for a few days, or perhaps longer, until all the ballots are counted. That’s okay. Every vote matters.

Peace.

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: Jennifer Griffin

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

May We Be Healed

Evelyn Herwitz · October 6, 2020 · Leave a Comment

May I be healed.
May you be healed.
May we be healed.

Years ago, I learned this meditation. It’s more resonant now than ever. As I write, according to the Johns Hopkins COVID-19 dashboard, there are 35,272,679 souls around the globe who are infected with COVID-19. Of those individuals, each grappling with the fear and suffering of this insidious virus, are 7,426,686 people here in the U.S., including the president. Worldwide, 1,038,307 people have died from Covid and its complications; 209,857 were Americans. All, with their own hopes, families, dreams.

By the time you read this, the pandemic will have claimed more victims.

May I be free of suffering.
May you be free of suffering.
May we be free of suffering.

We will never know how many lives would have been saved it everyone had complied with social distancing and wearing masks in the early days of the pandemic. I have seen estimates as high as 100,000 lives. Projections by the University of Washington’s Institute for Health Metrics and Evaluation (IHME) indicate that more than 363,000 Americans will have died from Covid by January 1, 2021, if we continue on our current trajectory. With universal masking, the model projects 277,000 total deaths. That’s still far too many. But 83,000 lives could be saved.

Think about it. By simply wearing masks, we could prevent the equivalent of 9/11 happening every day from now until the November 3rd election.

May I be full of self-compassion.
May you be full of self-compassion.
May we be full of self-compassion.

I wish this disease on no one. If any good comes of the president’s Covid infection—and the infection of so many in his orbit—I hope it will be a profound lesson in the importance of wearing masks in public. I fervently wish everyone would think beyond themselves and commit to the greater good of the community at large. Our partisan divide is now deadly, with masks or masklessness reduced to symbols of party affiliation. Enough, already. This past weekend’s news is the clearest evidence, yet (as if we needed any more) that large gatherings without masks, particularly indoors, will increase the risk of contracting Covid.

We need to take care of ourselves and each other. It’s scary enough, at the first sign of the slightest congestion, or cough, or sneeze, to wonder and worry that this may not be a simple cold, but Covid. All the more so for those of us with chronic auto-immune diseases and other serious medical conditions. Public masking is imperative.

So is voting. Our health as a people and a nation and a planet are all on the ballot this November. Make your voice heard.

May I be healed.
May you be healed.
May we be healed.

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: Jay Castor

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: COVID-19, managing chronic disease, mindfulness, 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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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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