Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

Touchy Choices

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I’ve been venturing out a bit more, lately, for various appointments. Wearing a mask in public is both required here in Massachusetts and a no-brainer, for my own health and those around me. But I’m debating whether I always need my second level of protection against Covid: disposable gloves.

I have a stash of gloves that I use for cooking, because I learned long ago that touching raw food with bare hands is an invitation to infected ulcers. So now the question is whether I need to wear them whenever I go out to a place where I may have to purchase something in Covid Time.

Here’s the problem: Inevitably, with credit card terminals, you have to push a button on the screen or use the pen device to do same. I really, really don’t want to touch any surface that’s been touched by so many fingers. Even the most conscientious sales clerk doesn’t sanitize the terminal regularly.

My default up to now has been to go for the extra protection and wear gloves. But sometimes it seems like overkill, and it’s also not great from an environmental standpoint to use all of those disposables that will live forever in a landfill. So this Monday, when I had a meeting that didn’t involve any financial transactions, I skipped the gloves. When I opened the doors to the office building, I pulled my sweater sleeve over my hand so I didn’t have to touch it. I was vigilant about not touching other surfaces. And when I was all through and back in my car, I used hand sanitizer.

Here’s hoping I didn’t miss a step. The whole thought process for a simple trip beyond my home safety zone requires so much concentration, being very mindful of everything I touch to avoid the virus. On the one hand, given my Covid protection protocols, I’m probably at less risk than ever of picking up an infection in one of my digital ulcers. On the other, I’ve still had a few minor infections that I could handle with topical ointment, and one major infection several months ago from having to go gloveless to a medical appointment in a local hospital, per their regulations.

So it goes. I hope you, too, Dear Reader, are doing all you can to keep yourself and your loved ones and anyone else with whom you come in close contact healthy and safe.

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: Emin BAYCAN

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.