Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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

Just Imagination

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On Monday morning, as I write, 154,944 people have died of COVID-19 in the U.S. By the time you read this, we will have surpassed 155,000 lives lost. At least 4.7 million Americans have been infected, the largest number for any country in the world. Without stricter social distancing and compliance with masking, we could surpass 300,000 deaths by the end of the year.

These numbers are staggering. But in the whirlwind of so much bad news every day, the data can all too easily be dismissed as so much white noise. Unless you’re a heroic front-line medical worker or have lost a loved one to this insidious virus, the daily uptick of infections and deaths is numbing.

Over the weekend, I started reading Albert Camus’s 1947 novel The Plague, a story about a small seaside town in northern Algeria that is swept by a resurgence of the bubonic plague. As a mysterious epidemic of dying rats gives way to a rising number of people perishing, the protagonist, Dr. Rieux, becomes increasingly convinced that this is the same plague that killed 50 million people across Europe, Africa, and Asia in the 14th century. But he struggles to persuade the local authorities to warn the population and impose public health restrictions, such as quarantines.

Trying to wrap his mind around the implications, Rieux recalls what he knows about the Black Death and other plagues throughout human history—that combined, perhaps 30 pandemics had accounted for about a hundred million deaths:

But what are a hundred million deaths? When one has served in a war, one hardly knows what a dead man is, after a while. And since a dead man has no substance unless one has actually seen him dead, a hundred million corpses broadcast through history are no more than a puff of smoke in the imagination.

Remembering the first recorded account of bubonic plague by the sixth century court historian Procopius, who attested that 10,000 citizens of Constantinople died in one day, Rieux cynically tries to think of a way to convey the magnitude of that loss:

Two thousand dead made about five times the audience in a biggish cinema. Yes, that was how it should be done. You should collect the people at the exits of five picture-houses, you should lead them to a city square and make them die in heaps if you wanted to get a clear notion of what it means. Then at least you could add some familiar faces to the anonymous mass.

How do we comprehend the loss of so many Americans so far, with no end in sight?

Here in Massachusetts, Gillette Stadium, home of the New England Patriots, has a maximum seating capacity of nearly 66,000. The Coronavirus has killed enough Americans to fill the stadium two-and-a-third times.

About 52,500 graduate and undergraduate students attended Ohio State University in Columbus in 2018, the nation’s largest university. The Coronavirus has killed more than three times that many individuals.

In its 2019 review of the 25 best small towns in America, Architectural Digest listed Traverse City, Michigan, population 15,000, as Number 1. The Coronavirus has wiped out the equivalent of Traverse City more than 10 times over.

The Boeing 777, the world’s largest twin jet airplane, can hold up to 451 passengers in a two-class set-up. The Coronavirus has killed as many people as if 344 fully occupied 777s had crashed, with no survivors.

According to the U.S. Department of Veterans Affairs, from 1775 to 1991, the total number of American troops killed in battle since our nation’s founding was 651,031 souls. Without changing our behavior nationwide, we may be almost halfway to that total in December. Let that sink in. In less than a year, if Americans continue to argue about whether proven scientific evidence that wearing masks in public, staying six feet apart, and being vigilant about social distancing and mask-wearing indoors can stanch the spread of COVID-19, then we could lose nearly half as many people as all the American soldiers who died on the battlefield over the course of more than two centuries of our nation’s history.

For the love of God, for the sake of everyone, even if it’s inconvenient or too hot or too scratchy, when you’re in public: PLEASE WEAR A MASK.

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: Gillette Stadium, Wikipedia.

Time Out for Family

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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.

Rolling Thunder

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I’m writing on Sunday night as a bank of thunderstorms rolls overhead. Lightening flashes and flickers, and the thunder rumbles deeply. We need the rain. It’s been hot and dry and lawns are parched. I’m thinking of my mother, who used to tell me when I was afraid of thunder that it was just the sound of giants bowling in the sky. She drew upon Washington Irving’s tale of Rip Van Winkle. We lived in the Hudson River Valley, not far from Irving’s home and a few hours’ drive from the Catskills, where the story takes place.

Van Winkle, an idler who seeks to escape his wife’s demands, wanders from his town into the mountains and comes across men dressed in antique Dutch clothing, who are playing nine-pins. He shares drinks and falls asleep, only to awaken twenty years later, after the American Revolution has been won. Still believing he is a loyal subject of King George III, he learns that most of his friends died for the American cause. The bowlers are rumored to be ghosts of Henry Hudson’s crew. His wife is dead. His son is grown. His daughter takes him in.

What would one discover, if she fell asleep today, only to awaken decades from now? I hope a revolutionary change as great as the one Van Winkle encountered—a more just world, a true democracy here at home, where all individuals are equally respected and safe within its borders. I hope she would find a planet that has come together to stop global warming and begun to reverse the devastation it has wrought. I hope, a time when science is taken seriously and the COVID-19 pandemic is a hard lesson learned and never repeated.

That’s what I hope. But we can’t assume, much as it would be nice to dream it away, that this tumultuous period will just work itself out on its own. It’s up to each of us to make it happen.

There are days when this seems overwhelming and impossible. Then I listen to the thunder and watch the lightening and think that as long as humans have walked the earth, we have survived storms. The creative spirit that spins thunderstorms into a game of nine-pins echoing in the mountains can envision a better world and find the way to it. We just need to stay awake.

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: Breno Machado

To Stay or Go

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It’s been hard to concentrate. Peaceful protests across the country and around the world that began with the murder of George Floyd and have swelled to encompass deeper and broader issues of racial injustice throughout our society demand attention and engagement. And here I sit, because of Covid, wanting to join in but knowing I can’t afford the risks.

I’ve joined several public protests in the past three-and-a-half years—the first Women’s March; several demonstrations protesting treatment of immigrants, including one in Washington, D.C., in Lafayette Park across from the White House; a local march for gun safety. That’s more protests than I ever did when I was growing up in the sixties, because our parents wouldn’t let me and my sister attend anti-Vietnam War and civil rights demonstrations out of fear for our safety. Now I’m 66 years old, older than they were then, during one of the seminal moments in our nation’s history, and I’m stuck at home.

I talked this over with my cardiologist Monday morning, on a previously scheduled phone appointment. He was quite clear that I need to avoid crowds due to my pulmonary risks with scleroderma and the nature of COVID-19. This advice reinforced my earlier conclusions. So I will stay put.

But my heart is with the peaceful demonstrators. And so I have written to our congresspeople, made donations, talked with family and friends across the political spectrum. I read and follow many news sources to stay informed and aware of a range of views. I listen to various podcasts to gain deeper insights and understanding of the profound injustices at stake. Most of all, I hope to find a way to help from home to support free and fair elections—the essential issue this November.

Each of us has to determine how to respond to this moment. It is my prayer that we will find our way to greater empathy for all, a more compassionate and just society, true public safety, and a willingness to really listen to each other in order to get there.

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: Max Bender