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Reflections on the Messy Complexity of Chronicity

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Hearing

Role Model

Evelyn Herwitz · September 22, 2020 · 2 Comments

On my desk, I have a figurine of Ruth Bader Ginsburg, a gift from my younger daughter. She is dressed in her black robe and trademark lace collar, and she holds a gavel in her hand. Her face is stern, owlish, with large glasses, her hair pulled back tightly against her scalp. She is not quite five inches tall.

The real Justice Ginsburg was barely five feet tall. But what a legal giant in that slight frame. We owe her such a huge debt for so many legal rights that we could easily take for granted—particularly for all of her fierce advocacy as an attorney and for her landmark opinions as a Supreme Court Justice that established the legal precedent that the 14th Amendment’s equal protection clause outlaws discrimination based on sex.

She was also a consensus builder, and her deep friendship with Justice Antonin Scalia, whose legal opinions were often at the opposite end of the ideological spectrum, is legendary.

I learned of her passing on Friday just as we were sitting down to dinner for the first night of Rosh Hashanah, the Jewish New Year. I was stunned, heart-sickened. Then I stopped to think how this extraordinary woman, who had fought and beaten cancer multiple times, was finally at peace.

Would that be so for our country. Now the fate of the Affordable Care Act, with its protections for people with pre-existing conditions like scleroderma and so many other devastating diseases, hangs in the balance, with a challenge to the law’s constitutionality scheduled to be heard by the Supreme Court the week after the November election.

Legal observers had predicted that the court would decide to uphold the ACA, as it has in past challenges, by a 5-4 opinion. But with Justice Ginsburg’s death, the court could render a 4-4 tie, sending the case back to the 5th Circuit Court’s ruling that the law is unconstitutional. Or, if the Republican Senate succeeds in its bid to replace Justice Ginsburg with a conservative justice even before the election, the court could overturn the law. The result for 20 million Americans who buy their health insurance through the ACA marketplaces, or who have gained Medicaid through the law’s expansion in recent years, will be chaos.

I’m saying a lot of prayers these days for our country, that our democracy hold strong against the forces of division, that Americans’ basic common sense and fair mindedness holds sway, that our better angels prevail. I think of Justice Ginsburg and hope I can summon the courage and determination she demonstrated through her long and illustrious career to do my part. There is too much at stake to take anything we hold dear for granted.

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 Tagged With: managing chronic disease, resilience

Crash Course

Evelyn Herwitz · September 8, 2020 · Leave a Comment

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

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

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

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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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