Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Vaccine Powerball

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Have you received the Covid vaccine, yet? That’s the Big Question in all my conversations with family and friends, now that we have a new president and science is once again taken seriously.

So far, the biggest winner of the vaccine lottery in my family is my sister, who bravely volunteered for the Moderna vaccine trials last fall and won the jackpot when she learned last week that she got the real thing. Thanks to her and thousands of other willing guinea pigs, we’re all going to be safer in coming months.

Next is my eldest daughter, who received her first Moderna shot on Friday, and Al, who is scheduled for his first Moderna dose on Tuesday afternoon. Both are social workers involved with home care, which put them in Phase 1 here in Massachusetts. Twenty-eight days from their first appointments, they will get the second dose. Then it’s a two week wait for the vaccine to be fully effective.

On Monday I learned that Phase II here begins February 1 for persons 75 and older. Those of us 65-plus, also those with co-morbidities (two check marks for me) are next up, with appointments coming online in mid-February. Counting the days . . .

While our daughter was able to get her shot through her employer, Al was on his own. We learned on Thursday night that he was now eligible (as opposed to original estimate of early February), so on Friday morning he contacted his boss, who had also just received the news from state officials, and Al got the link for the state attestation form that documents his status as a home care worker. Then began the hunt for an appointment.

I had already downloaded the contact information from the state website for vaccination sites in our area. But the first site, a Walgreens, (a) had an appointment page that lacked an option for the Covid vaccine and (b) was out of doses through this week. Another site was closed on Friday and not answering their phone. The third site had no appointments available for weeks.

There is a huge drive-through site at Gillette Stadium, home of the New England Patriots, but that’s a 90 minute drive from here. Nonetheless, I began checking for appointments, but found nothing. Then, in the midst of this increasingly frantic search, our rabbi happened to call me, and when I told her our predicament, she mentioned another site, maimmunizations.org. This website had one universal form to complete and more vaccination locations listed, so I began flipping through them to see if I could find anything for Al.

At first, it seemed like every available time slot was taken. I clicked on one rare opening, only to have it snapped up a split second before me. I was almost about to give up when another appointment at a local site suddenly appeared (nothing was open when I had checked that same date and site a few minutes earlier). So I grabbed it. Felt like a game of wack-a-mole.

I hope, by the time appointments open for my cohort, there will be more sites, more vaccine, and a more effective appointment interface. Meanwhile, I’m laying low, avoiding in-person shopping as much as possible. Al is out and about because of his work for his clients, but he’s agreed to double-masking when shopping, as an extra precaution.

Such a strange, strange time. At least the days are getting noticeably longer. Stay safe, Dear Reader. Stay 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: dylan nolte

Liminality

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For a few minutes on Monday afternoon, clumps of snowflakes swirled in the air, large as silver dollars. I was scrolling through my Twitter feed while eating lunch, checking for news of violence in D.C. or state capitals. There wasn’t any, thank goodness. The snow was brief, and did not stick.

I feel as if I am spinning like those snowflakes, neither here nor there, caught in liminal time and space, somewhere on the invisible threshold between states of being.

I go about my work and meetings on ephemeral Zoom, catch up on correspondence with friends and family, tell Al to “be safe” when he goes out to see his clients and do their grocery shopping.

I recheck our state’s Covid website to see if there are any new announcements about vaccine availability. There are none. I check the time and count the hours until Wednesday’s noontime Inauguration.

I look at surreal images of our nation’s capital, thick with masked men and women in camouflage, carrying arms—this time, in service of our country—and am both relieved and so very sad that it has come to this.

I remember to meditate before breakfast, but forget to walk after lunch. Daylight wanes as another 24-hour cycle wheels past or through or into memory.

My memory isn’t as sharp as it once was, so I write, so I know that I really was here, in this strange time and place that will someday be the subject of countless doctoral theses and historical treatises. I imagine colloquia and documentaries and debates, far into the future, about the forces that shaped our present, when people will wonder how we let it happen. They will have the advantage of knowing how it all turned out. But we must remain, here, and wait, and wait.

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: Darius Cotoi

Ever Since

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Last Thursday afternoon I got a call from my cardiologist’s nurse. She was checking in on how I was doing with my heart study, if I’d had any issues or symptoms. So I told her that the monitor had collected plenty of data, given that my arrhythmia had been quite active at various points over recent weeks.

Especially on Wednesday, during the violent siege on our nation’s Capitol. Watching the rioters, I was horrified. I thought of my mother, now long gone, who was 10 years old in Berlin during the Reichstag Fire in February 1933 that cemented the Nazi’s rise to power.

“They’re saying it was Antifa,” the nurse told me, in a confidential tone. She began to recount the latest distortions of what we had all witnessed on live television the day before, rioters breaking into the Capitol beneath fluttering Trump banners and the Confederate flag. I tried to stop her, but she went on enthusiastically for a few minutes.

Finally, I interrupted. “No,” I said, “it was not Anitfa, it was Trump supporters who stormed the Capitol, but I don’t want to get into an argument with you about it.”

She deftly switched back to my heart study and said she would put my cardiologist on the line. I did not mention to him what she said.

But I have been thinking about it ever since.

This woman is a person with empathy. She spoke to me very kindly about my symptoms. I’m sure she’s a fine nurse. She was also spouting very dangerous rhetoric, which she clearly believes.

Words matter. Lies repeated, amplified, matter. Facts, evidence, truth, critical thinking—all matter.

So does our ability to see the humanity in each and every one of us.

I am praying for our country, for our president-elect and vice president-elect, and for a peaceful transition of power on January 20. I am praying that the maelstrom of lying and distortions will finally, finally, spin itself dry. I am praying that we can truly hear one another, seek common ground, and collaborate for the common good to solve the enormous problems facing us and the world.

After one of the darkest days in our nation’s history, let there be light.

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: Andy Feliciotti

Disconnect

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Monday morning, I woke up with mild vertigo. This happens every so often. An ENT doc once explained to me that there are tiny crystals in your inner ear that can get displaced and cause the dizziness.

Or something like that. I can’t look it up, because our internet went down around 9:45. As I write, about six hours later, it has yet to come back. Our cable company’s recording says they are working to repair a damaged fiber optic cable. No estimate as to when we’ll be back online.

So, I am hoping that both my vertigo and our lost internet are just minor setbacks for the day and not bad omens for our bright, shiny New Year.

Meanwhile, I’m adapting to the day’s forced slower pace. I postponed one group Zoom meeting and held my other meeting the old fashioned way, by phone. Without emails to read and write, I drafted correspondence to send later. I’m composing this post in Pages, rather than directly into my blog, so it will be ready to cut and paste when the internet comes back.

At the same time, I feel like I’m bobbing in limbo. This sensation is not helped by the vertigo. The sun is already casting long shadows outside, and there is no update from our cable company. I trust that the internet will eventually come back on, and that my sense of balance will settle again in a day or two. But that doesn’t make the waiting any easier.

Not unlike how so many of us feel disoriented and stymied every day by the pandemic in our ability to accomplish the simplest tasks. But I could do without being caught in a microcosm today.

On the plus side, I can’t doomscroll, either. . . .

. . . Later that night:

Internet revived around 6:30 p.m. Postponed meeting was productive. And, of the 75 emails that downloaded when I regained service, only about five were worth reading. Still have some vertigo (here’s an explanation of those displaced crystals), but not too dizzy to keep me from writing. At the end of the day, that’s what matters most.

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: Radvilas Seputis

Next

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I don’t know anyone who can’t wait to give 2020 the boot.

This long year of grief, loss, anger, hated, injustice, hunger, illness, forest fires, super storms, deception, confusion, fear, so much fear, has left deep wounds that will take years to heal.

Will 2021 actually be any better? January 1 is just the day that follows December 31. It only feels different because we deem it so.

But we’ve learned a thing or two this awful year about wrestling with risk and uncertainty and adapting. And we can decide to push the reset button whenever we want. Not just on January 1, 2021, but on every new day that dawns. It is really up to each and every one of us to choose to do better, be kinder, act with courage, speak out, bridge misunderstandings, lend a helping hand, smile at a passing stranger (even with only eyes above masks), give thanks for what we have rather than focus on what’s missing.

By this time next year, I hope and pray the pandemic is but a blurred memory, our government is no longer a perpetual dumpster fire, commitment to justice for all is our lived priority, controlling climate change is a given, and that our lives, if never truly returned to normal, whatever that means, are at least more joyful.

It’s up to us to make that happen, moment by moment, choice by choice.

So, bring it on, 2021.

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: Aaron Burden