Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

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.

Untressing

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So, I finally took the plunge and got my hair cut. I had been putting this off for months, even after hair salons reopened under Phase I here in Massachusetts. Indeed, I rescheduled at least twice, because I was just too nervous about the pandemic risks.

Then the heat wave hit. It’s July, it’s really hot, even for me, and my hair not only resembled Albert Einstein’s, but also was just compounding my sense of overheating. I rarely perspire, but sweat was streaming down my forehead and into my eyes.

I tried a stopgap with hair combs and clips, which worked up to a point. It was kind of fun to be able to play around with my hair again after wearing it short for decades. But not fun enough to make it worthwhile for the long haul that this pandemic surely is.

My salon is in Boston, worth the trip for the talent—my March haircut lasted at least two months before it went haywire. I called ahead to double-check what precautions they were taking and was very pleased that they not only were following the strictest protocols, but also that my stylist wears a face shield over her safety glasses and mask. If she’s being that careful (which she needs to, because she’s at greater risk than I am from so many contacts during the day), then I figured I’d be in good hands. And I knew I could wait another two months before returning.

Even still, I was nervous before leaving the house last Tuesday. What if I was making a huge mistake? What if I got Covid and had a really serious case, given my high-risk status with scleroderma, all for the sake of vanity? I shared this fear with Al that morning, and he was clear that I was neither (a) doing something stupid nor (b) vain. This helped.

I made it into Boston in under an hour (pandemic = no traffic) and found street parking. So far, so good, no need to touch the meter because of my parking app. Most people were wearing masks, as I was, and the sidewalks were not overly crowded, so I could stay six feet or more away from others. I had hoped the salon door would be open, but it wasn’t; I was prepared, and put on a rubber glove to pull it open, so no contact there.

The receptionists were courteous, took my temperature with a forehead scan, then handed me a salon robe. My stylist greeted me soon after and asked if I wanted my hair washed or just spritzed with water for the cut. I was glad to have the option and chose the latter. She sanitized her hands and set to work.

Forty-five minutes later, there was a lot of hair on the floor, and I looked like myself again. She did a wonderful job. I had prepaid online, so there was no need to handle my credit card for the cut or a tip. I sanitized my hands and left feeling great.

Still doubts lingered. For the next few days, I found myself second-guessing any tiny change in my health—a sneeze, a cough, an odd tingling in my tongue (this, I realized, was due to something in a takeout pizza we consumed for dinner that must have been an irritant). But I also was certain that I’d know if I were sick. I am very attuned to my body, and whenever I’m coming down with something, I immediately feel off-kilter. As I write a week after my haircut, I still feel fine, thank goodness.

Getting my hair cut was about more than just wanting to feel cooler in the heat and wanting to look my best, although those were certainly motivating factors. It was also about reclaiming a piece of normal. It was about overcoming my fears of what this pandemic has wrought and taking a carefully calculated risk. It was about supporting my stylist so that she could continue to make ends meet.

My hair is one of the very few things I can control about my appearance, ever since I contracted scleroderma. When it looks good, I feel good, and when I feel good, I have more energy and confidence. And I can be more present and supportive of others. Well worth it.

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: Ugur Peker

Blast from the Past

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Last week, a longtime friend sent me this photo. That’s me, with the dark hair, standing. The year is 1980, I’m 26 years old, a graduate journalism student at what is now the University of Illinois Springfield.

My friend is seated to the left, and our third classmate is to the rear. The guy with the beard and plaid 70s jacket was our news director at WSSR-FM (now WUIS-FM), the Springfield NPR affiliate.

My first reaction to seeing this on my social media feed was laughter. Were we ever that young? Did I ever have that much hair? No glasses, either—that was back in the day when I wore contacts.

Lots of nostalgic memories of covering the Illinois Statehouse during the 1979-80 legislative session, including the infamous June 1980 defeat of the Equal Rights Amendment, which effectively killed it nationwide (until now, when ratification efforts have been revived). I covered the ERA debate for NPR as a stringer, even interviewed ERA foe Phyllis Schlafly once on the phone, a master of the 20-second partisan soundbite. (If you watched Mrs. America on Amazon Prime recently, you’ll know whom I’m talking about.)

As I studied the photo, I zoomed in on my hands. I have very few images of my adult hands before scleroderma. I had forgotten how long my fingers were. As I thought about this some more, I realized this picture was taken the year before I developed the first symptoms—in my case, swollen fingers and migrating arthralgia (as in, pain in a knee, then a few hours later, pain in a shoulder, on and on). I’d had Raynaud’s for years, but only thought of it as a nuisance.

It’s one thing to see a nostalgic picture of your younger self, quite another to see yourself caught in amber, before everything changed.

Yes, I do miss my young hands. But I can no longer remember what they felt like. And I’m not sad. In fact, you couldn’t pay me enough to go back to being 26 years old in that life, at that time. The year after that photo was taken, I moved to Massachusetts, my first marriage broke up, I lost my new job as News Director at our local NPR affiliate due to Reagan-era budget cuts, and I was stressed, to say the least. I believe it is no coincidence that I began to experience strange auto-immune symptoms, even as I had no clue what they were. Though there are no definitive studies that prove a causal relationship between stress and autoimmune disease, there is some pretty interesting evidence that such a connection is likely. From my own experience, I can certainly report that constant triggering of my fight-or-flight adrenaline response when confronted with all of those changes and losses at once did not do my health any good.

Forty years later, I have compassion for that younger me. She did not know what she was in for, but she discovered a deep reserve of grit that she never knew was there until she needed it. None of us ever knows, beyond the moment we live in right now, what is next. As we all find ourselves in our current heightened state of angst and unknowing, only one thing is certain—we’ll find out when we get there. May we all learn how to make the best of it, better than we could have ever anticipated.

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: University of Illinois Springfield