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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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mindfulness

Souvenirs

Evelyn Herwitz · September 1, 2020 · 2 Comments

Staycation/home-decluttering week is over, and I’m back at my computer. And, of course, we didn’t get nearly as much done as I had naively included on my detailed to-do list. But we still made a lot of progress.

Each day, we tackled a different room, and each day Al carted out bags of recycling and give-aways. We made a huge donation of toys to a local neighborhood center that serves many families throughout our city. Both of our daughters have helped, either in person or via video chat, to determine what stays and goes. I’ve learned a lot about getting home improvement estimates from contractors, and we have one big project scheduled and another in the works.

In the process, I read through about fifty years of saved correspondence (writing letters is truly valuable), sorted old papers (no, I really don’t need my grad school graduation program), and sifted boxes of photos (old color prints stick together and are useless unless mounted in an album). Favorite finds include an edited copy of my college application essay, several priceless letters from my grandmother, and a series of old ID cards from my twenties, some of the only pictures I have of myself pre-scleroderma.

To break up the work, we took two afternoons off for day trips: on Thursday to the Fitchburg Art Museum—a real treat, our first such visit since the pandemic—and on Sunday to Allens Pond Wildlife Sanctuary, run by Massachusetts Audubon, on the southeastern coast. So, we finally got to the ocean this summer. The woodland hikes were beautiful, the shore, blustery and delightful.

On the way back to our car, walking along the rocky beach, I noticed a very smooth, gray rock and picked it up. It has a slight depression on one of its six sides. Another is slightly rounded. It feels soft, even though it’s hard. It fits perfectly in my hand. Maybe it was once a cobblestone in some old New England street. It’s been tossed and tumbled for who knows how long before it ended up at my feet. Its presence, beneath the bright, late August sun, spoke to me.

I brought it home to use as a paperweight. But there’s something about holding it that feels comforting. Just as I’ve sifted and sorted old stuff to glean the mementos that capture important personal history, I find something grounding in a rock that perhaps once supported thousands of feet and carriages and cars, that was discarded as useless, that spun through an ocean of turmoil, and is now source of beauty and calm. There’s a lesson to be learned there—and remembered—at the end of a pandemic staycation, when the world seems upside down.

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, mindfulness, resilience, vacation

Home Improvements

Evelyn Herwitz · August 18, 2020 · Leave a Comment

If it weren’t for Covid, this week would have been abuzz with final trip preparations. We had hoped to go to Eastern Europe this summer to trace Al’s ancestry, with a side visit to see the town where my great grandfather Harry Herwitz lived. All that is now on hold (in one sense, a good thing, because the Herwitz family came from a town not far from Minsk, in Belarus, which, if you’re following the news, is in political turmoil over their election last week).

So, instead, we’re taking time off to work on our home. Last week we took care of some important electrical system repairs. There are leaking skylights to replace and a leak in my office roof (a converted porch), some painting to do, and a kitchen floor to refinish. We have some redecorating plans, too, which involve a lot of decluttering. Not exactly fun, but I’m hoping that by really focusing on all this stuff that we’ve put off for far too long, our home will be more organized, comfortable, and cozy.

Given that we’re all spending more time at home these days, it’s a worthy goal.

Over the weekend, I was listening to a podcast interview with Pico Iyer, who is a wonderful, thoughtful travel writer. He was speaking about how his travel has become more limited during the pandemic, and how it has brought him to appreciate his immediate surroundings much more. I have found myself doing the same, even on my walks around the neighborhood. Every time I walk, I see or hear something that I missed before—a purple door, a fairy garden, the chatter of katydids. These are welcome surprises.

We’ve had some unwelcome surprises as we’ve begun our home improvement projects, including the discovery of a main electrical cable with completely exposed wires due to rotted insulation. But I’m very grateful that we found out, and it’s now been replaced. That’s what happens when you start to pay attention to what’s been right under your nose all along.

So, I will be off next week, exploring the familiar with heightened focus, maybe taking some day trips, also. I hope you, too, are able to make the most of these last weeks of August in Covid Time. Back in September. 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: Debby Hudson

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

Monday Morning

Evelyn Herwitz · August 11, 2020 · 1 Comment

There are days when I just don’t know what to think anymore. Each day brings so many awful headlines. I feel like I’m trapped in a slow motion train wreck.

Then I just have to stop, take a deep breath, and focus on what’s right in front of me. Because, in truth, what is happening in the moment is the only certainty.

So, here’s what I did Monday morning:

Meditated.

Exercised.

Ate a good breakfast.

Set up some estimates for repairing leaks in our roof.

Mailed my application for vote-by-mail ballot.

Paid my life insurance premium.

Signed up for Postcards to Voters.

Wrote this blog.

Just put one foot in front of the other.

The sun is shining. I heard mourning doves when I woke, my favorite greet-the-day birdsong. It’s another August scorcher, but our A/C is keeping our home comfortable. We’re all still well, as far as we know. For all of that, I am profoundly grateful.

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: “Mourning Dove, Cabin Lake Viewing Blinds, Deschutes National Forest, Near Fort Rock, Oregon” Wikipedia Commons

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

Time Out for Family

Evelyn Herwitz · July 28, 2020 · 2 Comments

This past weekend, five months into the pandemic, we finally got to see our daughters in person, together. Family time has always been important to us, but all the more so now.

Our younger daughter came up from Philly, which was good timing, because as of the first of August, Massachusetts is imposing new Covid restrictions for out-of-state visitors. Our older daughter came out from Boston. On Saturday afternoon, we took a lovely walk at Garden in the Woods in Framingham, Mass., and on Sunday, we were all home for an outdoor supper on our deck, meaningful conversations, and a lot of laughs. Both daughters slept over. It’s been a long time.

Every day we share together is a blessing. I hope the same is true for you and yours. Here are some of my favorite photos from our nature walk. . . .

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, mindfulness, resilience

Untressing

Evelyn Herwitz · July 21, 2020 · 2 Comments

So, I finally took the plunge and got my hair cut. I had been putting this off for months, even after hair salons reopened under Phase I here in Massachusetts. Indeed, I rescheduled at least twice, because I was just too nervous about the pandemic risks.

Then the heat wave hit. It’s July, it’s really hot, even for me, and my hair not only resembled Albert Einstein’s, but also was just compounding my sense of overheating. I rarely perspire, but sweat was streaming down my forehead and into my eyes.

I tried a stopgap with hair combs and clips, which worked up to a point. It was kind of fun to be able to play around with my hair again after wearing it short for decades. But not fun enough to make it worthwhile for the long haul that this pandemic surely is.

My salon is in Boston, worth the trip for the talent—my March haircut lasted at least two months before it went haywire. I called ahead to double-check what precautions they were taking and was very pleased that they not only were following the strictest protocols, but also that my stylist wears a face shield over her safety glasses and mask. If she’s being that careful (which she needs to, because she’s at greater risk than I am from so many contacts during the day), then I figured I’d be in good hands. And I knew I could wait another two months before returning.

Even still, I was nervous before leaving the house last Tuesday. What if I was making a huge mistake? What if I got Covid and had a really serious case, given my high-risk status with scleroderma, all for the sake of vanity? I shared this fear with Al that morning, and he was clear that I was neither (a) doing something stupid nor (b) vain. This helped.

I made it into Boston in under an hour (pandemic = no traffic) and found street parking. So far, so good, no need to touch the meter because of my parking app. Most people were wearing masks, as I was, and the sidewalks were not overly crowded, so I could stay six feet or more away from others. I had hoped the salon door would be open, but it wasn’t; I was prepared, and put on a rubber glove to pull it open, so no contact there.

The receptionists were courteous, took my temperature with a forehead scan, then handed me a salon robe. My stylist greeted me soon after and asked if I wanted my hair washed or just spritzed with water for the cut. I was glad to have the option and chose the latter. She sanitized her hands and set to work.

Forty-five minutes later, there was a lot of hair on the floor, and I looked like myself again. She did a wonderful job. I had prepaid online, so there was no need to handle my credit card for the cut or a tip. I sanitized my hands and left feeling great.

Still doubts lingered. For the next few days, I found myself second-guessing any tiny change in my health—a sneeze, a cough, an odd tingling in my tongue (this, I realized, was due to something in a takeout pizza we consumed for dinner that must have been an irritant). But I also was certain that I’d know if I were sick. I am very attuned to my body, and whenever I’m coming down with something, I immediately feel off-kilter. As I write a week after my haircut, I still feel fine, thank goodness.

Getting my hair cut was about more than just wanting to feel cooler in the heat and wanting to look my best, although those were certainly motivating factors. It was also about reclaiming a piece of normal. It was about overcoming my fears of what this pandemic has wrought and taking a carefully calculated risk. It was about supporting my stylist so that she could continue to make ends meet.

My hair is one of the very few things I can control about my appearance, ever since I contracted scleroderma. When it looks good, I feel good, and when I feel good, I have more energy and confidence. And I can be more present and supportive of others. Well worth it.

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: Ugur Peker

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Filed Under: Body, Mind, Sight, Touch, Uncategorized Tagged With: body image, body-mind balance, COVID-19, hands, 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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