Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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

Heartfelt

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Years ago, early in my life with scleroderma, I developed an arrhythmia. For decades now, my heart occasionally feels like it’s skipping a beat. Actually, however, as my cardiologist has explained to me, I’m having an extra contraction. It gets worse when I’m stressed and is my orange alert to slow down, examine what’s going on, and make some adjustments in my life. It always improves with regular exercise, especially walking.

Recently, in the weeks after the November election, my arrhythmia has been more active. No surprises, I guess, because I have been very stressed about both the divisive politics plaguing our nation and the pandemic surge. But its frustrating and annoying, to say the least.

So, when I spoke with my cardiologist recently, he recommended doing a heart monitor study for up to 30 days. (Hopefully I won’t need to wear the monitor that long.) It’s probably been 35 years since I wore a Holter monitor, and I think it was maybe for only a week. Back then, the monitor was this big clunky device, the size of an old Motorola cell phone, that you wore around your neck or on a belt, connected to a bunch of wire leads attached to your body. Basically, it was a portable 24/7 EKG. You had to make notes in a notebook if you felt any symptoms, with date and time. All that information was compiled after you turned in the monitor and notes. Not fun.

Fortunately, technology has significantly advanced over the past three-plus decades. No appointment necessary to activate the device. It arrived via UPS on Friday, in a small box with the equipment and how-to instructions. Instead of a big, clunky monitor, there are two small, rechargeable monitors about 1.5 x 2.0 inches and maybe a half-inch high. You charge one while you wear the other, and the charge lasts about 12 hours. The monitor snaps into an oval foam base. On the back of the base are two snaps for removable electrode patches. So basically, you plug in the monitor, attach the electrodes, and then peel off the sticky backing from the patches and adhere to your skin. The correct positions (two alternatives) are illustrated in the guide book.

Readings collected by the monitor then feed via wireless tech to a Samsung phone that is solely for collecting the data. This, in turn, sends reports periodically to the tech company that is running the study. If you experience a symptom, you press the button on the monitor, and then the phone displays some choices to describe the symptom. You tap the appropriate description and go back to whatever you were doing. You just have to keep the phone within 10 feet; if you go out of range, the data will download when you’re close again.

Pretty amazing. And relatively easy to manage. You can’t get it wet, so you have to pause the study and remove the monitor when taking a shower or bath. I also find that my skin needs a break every 24 hours from the electrode patches, which cause a mild rash, even as I asked for the extra-sensitive skin version. So I wait about a half hour after my evening shower before reattaching everything. In the morning, I just switch out the monitors.

My cardiologist said that if I experience enough symptoms over the first week or so, I can call him and see if he can get an early version of the report, so that we can end the study. I’m hoping that will be the case. I’ve certainly recorded symptoms at least a dozen times so far. From what he tells me, it’s probably nothing serious, just an annoyance that I continue to live with. But I’m glad that we’ll have an updated baseline, at the very least.

Ironically, he also predicted that my symptoms might vanish, or at least lessen, once I have the monitor on. That was certainly true for the first 24 hours or so. How odd to have the presence of the monitor be somehow a placebo or, at least, a reassurance that I’m going to get some answers. The disconcerting experience of the extra beats, especially when they go in runs, is worse when I don’t know what it means.

Meanwhile, I’m trying to get in some walks, despite a lot of snow here in recent days and much colder temperatures. That, and trying to better manage my news diet. The winter solstice is one day past. 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: Jude Beck