Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

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

Unnecessary Procedures

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For well over a year, I’ve had a piece of grey calcium protruding from the pad of my right thumb. As I wrote back in February, I finally saw my hand surgeon and worked out a plan for him to remove it—the challenge being that it’s only the tip of a long chain of calcium that runs down the entire thumb. It gets in the way, hurts when I bump it, and generally makes me drop things.

Surgery was originally scheduled for this spring, but, of course, the pandemic put that plan on hold. I got a call at the end of May, as the hand surgeon’s office began to reopen, to see if I wanted to reschedule for June, but I declined. It just felt too soon—a good thing, as it turned out, because I got an infection in the left thumb that has taken weeks to clear, and I know he wouldn’t have operated under that circumstance, even if the opposite thumb was the problem.

The situation in the past few weeks has gotten really uncomfortable. With the clearing infection on the left and protruding calcium on the right, I was having greater and greater difficulty doing basic tasks. I had a note in my calendar to call the hand surgeon’s office this week and was now ready to get on his schedule as soon as possible.

Then, Sunday night, as I was changing clothes to get ready for bed, I felt a sharp twinge in my right thumb. Then I noticed some blood on my nightclothes. Sure enough, that nasty chunk of calcium had finally, finally, broken off of its own accord. It left a hole in my thumb, about an eighth of an inch deep. The tip of the rest of the calcium chain was barely visible and far enough beneath the surface to remain inoffensive, for now.

I was thrilled. No more need for surgery, no more risk of exposure in a medical setting to infections or Corona, regardless of precautions. From long experience, I knew the hole would quickly close up on its own. So I rinsed it with peroxide, bandaged it with antibacterial ointment, and went to bed.

By Monday morning, it was already half healed. Warm weather certainly helps. Best of all, I can finally use my right thumb again.

This is not to say that, if I’d had no relief, I wouldn’t have gone ahead with the procedure. But our bodies do have a way of healing themselves. I kept hoping this would happen on its own, which is why I took so long to see my hand surgeon in the first place. As if to drive the point home, in Monday morning’s New York Times was this article about how people who have had elective procedures postponed during the pandemic are actually staying healthier than expected.

Complex trade-offs. Grateful that the scale of options swung in favor of non-invasive, this time.

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: Roman Kraft

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

The Long Road Ahead

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There is so much anguish across America. In my city, on Sunday, the protest about the death of George Floyd in Minneapolis at the hands of police was peaceful, righteous, and culminated in a handshake between the local leader of Black Lives Matter and the white police captain. Together, they led a march from downtown police headquarters back to City Hall, where the demonstration had started.

The hard work remains before us. Systemic racism in our country is on stark display. Even before the turmoil of this past week rivited the nation’s attention (once again) on racial injustice, the pandemic exposed mounting evidence that people of color in this country are at greater risk of life-threatening consequences of COVID-19 than whites. But those risks of poorer health outcomes are not limited to Corona. Our health care system must address racial disparities in access and treatment that tip the scales against people of color.

In a comprehensive 2018 report by Martha Hostetter and Sarah Klein of The Commonwealth Fund, “In Focus: Reducing Racial Disparities in Health Care by Confronting Racism,” the authors state, “A black woman is 22% more likely to die from heart disease than a white woman, 71% more likely to perish from cervical cancer, and 243% more likely to die from pregnancy- or childbirth-related causes.”

The reasons for these discrepancies go far beyond income disparities and associated risks. As the report explains, at the core of racial disparities in health are not only lack of access to quality health care but also lack of equitable treatment—and the long-term impact of stress.

Referring to the data cited above, the report states:

These findings have led some health care researchers to suggest that the experience of being a black woman in America is, itself, a risk factor—and that attention must be paid both to black women’s level of stress throughout their lives and how they are treated by health care professionals. ‘There’s often an assumption in the medical world that racial disparities are due to something genetic, when in fact it might be racism,’ says Neel Shah, M.D., assistant professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School. ‘We’re taught that racism is evil so it’s hard to recognize that in ourselves. But the studies suggest, for example, that we believe black women less when they express symptoms, and we tend to undervalue their pain.’

Poorer health outcomes for people of color are not limited to women. According to the Centers for Disease Control, “African American men suffer disproportionately from high blood pressure, a known risk factor for heart disease and stroke.” I’m summarizing here for the sake of brevity, not to diminish the significance of these statements. This is but the tip of a massive iceberg of the chronic health impact of living in a society where skin color remains a major determinant of personal safety and well-being.

Anyone who lives with an autoimmune disease knows that stress triggers all sorts of unwanted health issues. Chronic stress leads to chronic disease. Our country has a long way to go to address the many racial injustices that are hard-wired into our society. Acknowledging and addressing the cost of racism in our health care system is an essential place to start.

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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A Matter of Trust

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For all the times I sit down at my computer with only an inkling of what this week’s post will be about, the universe always seems to hand me a story. Here’s what happened Monday morning . . .

Back in early April, I applied for my Social Security retirement benefits. I was to reach full retirement age at 66 a few weeks later, so it was high time to file. With the pandemic crashing life as we know it, I assumed it would take extra time for my claim to process, so I waited. And waited. And waited.

Around the end of April, I received two emails, sent within seconds of each other in the wee hours of the morning, informing me that there was a question about my claim. According to one of the emails, I had worked in a town called Reading and had a pension while employed there. The other didn’t mention the town, just the issue of a pension, which called my benefits into question. Both referred me to a Mr. Moore at the Social Security Administration and told me to call. Each email gave a different deadline in May, by which time I needed to respond or my benefits would be reduced.

I was immediately suspicious, not only because of the conflicting deadlines, but also because (a) I never worked in or for the town of Reading, Massachusetts, and (b) there are a lot of other towns named Reading across the country—and the state was not specified. My concern was amplified by the fact that the emails were “signed” as “Social Security Administration” (not by the mysterious Mr. Moore) using a typeface called Brush Script, which is a very dated style popular in 1950s advertisements. What government agency would use that typeface as its signature in an official email?

So, I did what any Internet savvy consumer would do, and I googled the phone number that I was supposed to use to contact Mr. Moore. Sure enough, there were a slew of reports that this number was a scam. There were other reports that it was legit. I checked the SSA website and found notices of many scams currently active, including some associated with COVID-19. I decided this was probably a way for the scammer to try to get my phone number, so I trashed the emails and wrote a complaint to the SSA Inspector General’s Office.

Meanwhile, my benefits application was still pending in my SSA online account. I planned to call this week to find out what was going on. Then Al brought in the mail on Monday. “Here may be the answer to your question about your benefits,” he said, handing me an official-looking envelope from the SSA. I opened it and was dismayed to find a hard copy of the exact same Mr. Moore letter, with the same Brush Script signature, a vague reference to a pension issue, and a new deadline of June 13. As had the previous emails, it included numbers for our local SSA office and the national office, too.

Not trusting anything, I looked up our local office online. The numbers matched. I called, and to my astonishment, was connected to a real human being within minutes. And, she confirmed that Mr. Moore was, indeed, real, there was a question about a pension from work in Reading, Mass., and I really needed to get in touch with him or my claim would be closed. I was so confused that I was beginning to wonder if this woman really worked for the SSA, whether I had somehow earned a pension in the past, and if I was at risk of giving up confidential information during the call.

But she was quite patient and even tried to connect me to Mr. Moore directly. As it turned out, he had picked up another call while I was on hold, so she said to call the number I’d previously assumed was suspect. I left a message for him and went down to our basement file cabinet to find the only information I could imagine had anything to do with this, my severance arrangement when I was laid off 10 years ago. I had paid into a retirement plan, but received the balance when my job ended and reinvested it.

Soon enough, Mr. Moore called back. He turned out to be a most pleasant guy, quite calm and understanding. The mistake had been his, to use the wrong town instead of my former employer, but only because they have been swamped since the pandemic struck and he’s been struggling to push out all the paperwork for many, many benefit claims. He took a closer look at my case and realized that the type of retirement plan I’d paid into was not an issue, immediately approved my claim, took care of tax withholding, told me what amount to expect, and said there was a good chance I’d get my first check by week’s end.

When I told him about the scam information I’d found online, he was quite familiar with it and said that there had been many attempts by Russian hackers to get into their system (none successful—sure hope he’s right), and that the phone number I’d found suspicious but had now used to reach him has sometimes even come up in Google searches as a Russian business. More evidence of trying to throw us into confusion and mistrust of government institutions. I thanked him for his help and wished him well. (I did not mention the typeface.) After I hung up, I checked my online account and saw that, indeed, my benefits had been approved.

We live in a time of deep distrust. So much that we’ve relied on to anchor our lives is now uncertain. The Internet is rife with 21st century snake oil peddlers, thieves, and propagandists. Conspiracy theories are tearing our country apart.

It’s essential to be vigilant. It’s also essential to do all your homework. I could have called the national SSA number right away, or our local office, verified or reported the emails I received, and resolved all of this much sooner.

Several weeks ago, I seriously considered writing a blog post about what I thought was a scam, as a warning. Today my message is different. Today my hope, Dear Reader, is that you will not let cynicism and skepticism keep you from getting the information and help you truly need. Let due diligence, not fear and suspicion, be your guide. Now, more than ever.

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: Jamie Street