Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Added Advantage

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There are two basic reasons why it’s especially important, as the pandemic rages, to wear a face mask in public and indoor gatherings: it protects others from the possibility of your having Covid, and new evidence indicates that it protects you, too, from getting the deadly virus. Covid spreads by vaporized, exhaled droplets. Masks stop the spread.

As the weather gets colder here in Massachusetts, however, I’m discovering another plus for mask-wearing: it keeps my face warmer. Since I dislike the way it causes my glasses to steam up, I’m experimenting with leaving my glasses at home when I do my neighborhood stroll. I’m not so near-sided that this is a safety risk.

With some scarring on my lungs due to scleroderma, the mask can affect my breathing. So, if there is no one else around, I’ll tuck it under my nose so I can breathe more easily. Then if I meet someone along my route, I just pop it back in place.

I look forward to the day when we can dispense with masks. But even with the promise of powerful vaccines on the horizon, even knowing that those of us with compromised immune systems will likely be among the first to get the vaccine, I am resigned to the fact that we’ll still be wearing masks for many months to come. So I’ll focus on the added advantage of staying warm, and just deal.

As I was reminded recently, seat belts were considered an imposition and violation of civil liberties, too, when they became mandatory in all new U.S. vehicles in 1968. I can still vaguely recall how strange and restricting it felt when we had to begin using them. Now most wouldn’t think of driving without them, because seat belts save lives.

So do masks.

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: United Nations graphic created by Laura Makaltses

Constancy

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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

As We Wait

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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

Crash Course

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I’m writing on Labor Day afternoon. The weather is beautiful, and I’m looking forward to a walk later. And my computer is working.

None of this is to be taken for granted. Normalcy is a shape-shifter, especially now, as we enter the fall countdown to the election, which all too often wakes me up in the middle of the night.

As if to present the perfect metaphor for our current unpredictable state in the States, on Thursday morning, I turned on my iMac per usual, only to have it stall in power-up mode. The Apple logo simply stared back at me after the progress bar completely filled.

So much for progress.

After numerous futile attempts to turn off the power and turn the machine back on (the electronic equivalent of beating my head against a wall), I realized I needed help. Several chat sessions with Apple techs got me only so far with attempts to reload the operating system. At least I had my laptop, so my work day was not wasted, but by evening, I gave up on the iMac and decided to try again the next morning.

On Friday I abandoned the chat support in favor of a phone call. And I lucked out with a wonderful tech support guy who stayed with me as I waited for the OS to download (a half-hour, at least). Turns out he lives in Montreal, so we discussed how Canadians are following our presidential election, Covid restrictions there and here, and also learning languages. He speaks seven: Portuguese (he’s from Brazil), French, English, Spanish, a little Italian, Mandarin, and is learning Russian. Wish my mind were that flexible!

Meantime, we got the software to open up, but my cursor froze, once again, in the upper left-hand corner of the screen. He suggested I buy a wired mouse to finish the set-up. What a concept! I said au revoir and headed out to Best Buy.

The mouse did the trick, and with one more call to tech support (this guy was in Oregon and we ended up chatting about greyhounds as pets while waiting) I got the iMac up and running again. I spent the rest of the afternoon updating old apps and the OS to the latest version, and everything is working perfectly again (for now).

A dysfunctional computer is certainly not the greatest calamity as long as you have backup. Frustrated as I was (and concerned that I might have to buy a new iMac, which is an expensive proposition) the whole experience turned into an unexpected opportunity to meet interesting people with different perspectives whom I never would have encountered otherwise. I also learned some new computer tricks and sharpened my problem-solving skills. And I was able to fix my iMac.

Not bad for what presented as a major roadblock at the end of last week. May all our issues be so pleasantly resolved by being open to unexpected encounters along the way.

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: Ryan McGuire

Souvenirs

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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.