Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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.

Home Improvements

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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

Monday Morning

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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