Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

May We Be Healed

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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

Job 1

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Well, my blog is late this week. But I have a good excuse. A few, actually.

Usually, I write on Mondays for Tuesdays, but this Monday was Yom Kippur, so I intended to write on Sunday for Tuesday. But on Sunday, Al and I spent all day cleaning and reorganizing our kitchen, which had been out of commission because we had our maple wood floor refinished over the course of Wednesday, Thursday, and Friday. I could have thought ahead and written this blog any one of those days, but I didn’t.

Or, rather, having kitchen stuff all over our living room, dining room, and in the garage for the better part of the week just really threw me off. Floor refinishing is a big, messy, smelly job that requires removing anything that could attract a film of sawdust. There was something about having one of the most-used rooms in our home inaccessible, and all the stuff that was on the kitchen floor, counters, and walls cluttering up the rest of the house, that just felt chaotic.

Because of the way our house is constructed, the kitchen floor—which had become very worn and marred in the 21 years we’ve lived here, and suffered some water damage recently that prompted the job—extends into a little hallway to a half-bath and the basement door. We have a second fridge in the basement, but the only way to access it for meals was to go outside, around back, open the storm-cellar doors, and get in through the basement backdoor. The weather was good, so we could at least eat out on the deck. Needless to say, I got in plenty of steps with every meal. But that routine was also disruptive.

Tuesday, midday, as I write, everything is back in place. We can use our kitchen again. It’s really amazing how I can concentrate better. The kitchen floor looks great, we improved some of the organization, and the room is cleaner than it’s been since we moved here, I am sure. Order begets focus. Disorder begets mental fog.

Which brings me to the obvious parallel with Covid Time. We’re all discombobulated by the pandemic’s disruption and health threats. Our “new normal” isn’t really normal, it’s just a very long holding pattern, in which we’ve (hopefully) been able to establish new routines and ways of structuring time. How doable this is depends in large part on health and financial stability. I’m extremely grateful that, so far, we’ve been able to maintain a secure foundation during the pandemic.

Knowing that I have to live with the confusion and nuisance of a closed-off kitchen during a messy refinishing job is a minor inconvenience with a known end point—and a definite benefit. Living through a pandemic without clear, universally accepted public health guidelines, without extensive testing and contact tracing, and in a divided and divisive society where mask-wearing—the best defense against spreading the deadly virus—is a political litmus test, is enough to make anyone feel lost.

We can’t change the reality of COVID-19, but we can certainly change the trajectory of this terrible pandemic with common sense public health policy. Voting has started in many states across the U.S. Make sure you’re registered. And vote this fall as if your life depended on it. Because yours, mine, and everyone else’s does.

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.

Role Model

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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.

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.