Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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

 

Rx for TP

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The Great Toilet Paper shortage may have eased for now, but in recent months, when little was to be found on grocery store shelves, I found myself confronted once again with challenges of personal hygiene. As I’ve written before, cleaning up after #2 is not easy when your hands don’t work well. This has been exacerbated for me recently with painful calcium deposits in the pads of both thumbs. But with toilet paper a scarce commodity, I’ve had to be conscious of conserving paper—as any of you with scleroderma well know, that makes it extra hard to really do the job.

For several years I relied on “flushable” wipes, which are a very efficient solution. But I had to give up after the second of two disastrous lessons in the physics of sewer line back-ups into our basement. As our plumber said, there’s no such thing as a flushable wipe. Indeed, not only do they clog plumbing, but also those wet wipes that make it into the sewer system cause major problems in public waste sanitation systems, creating what the industry terms “fatbergs” that destroy expensive pumps.

After our trip to Greece last summer, where you quickly learn to toss all toilet paper in the handy waste basket next to the toilet, because the plumbing and sewers can’t handle even regular toilet paper, I tried a modified approach of disposing my wipes, wrapped in more toilet paper, into the bathroom waste can. But this uses a lot of paper, once again, and the wipes are also still not biodegradable. Moistening toilet paper with water doesn’t work well, either, if (a) you have bandages that you don’t want to get wet, and (b) the toilet paper often disintegrates.

So, this brings me to my latest solution, which I found thanks to all the articles and blogs being written about toilet paper alternatives when none could be found due to the pandemic: a postpartum peribottle. Designed for women to ease soreness after childbirth, this is a soft rubber bottle with a spout with a hooked end, so you can hold it upside down, aim and squirt. It does not eliminate the need for toilet paper, but it certainly cuts down on how much.

I found one for $15 online, and it has a collapsible spout and even a little bag for travel. It takes a little practice, but it is definitely the easiest and cleanest solution I’ve come across so far. And it’s far cheaper than installing a bidet.

Even if you don’t have hand problems, using a peribottle is a mighty convenient way to conserve toilet paper—which, in turn, saves the trees that toilet paper is made from. And saving trees helps to moderate climate change and maintain animal habitats—which matters for a host of reasons, including the mounting evidence that human encroachment on natural habitats contributed to the way that a bat-borne virus morphed into the COVID-19 pandemic. It’s all interconnected, folks.

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: Jasmin Sessler

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

Dreamscapes

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I am trying to remember what I dreamt this morning. I used to be able to recall my dreams, but my memory doesn’t work the same anymore. Now I’m often left with only the ghost of emotions stirred in my sleep. All I can remember of this morning is waking and drifting and waking again, trying to shake off the dream and falling back into it, literally trying to shake myself awake. This took nearly an hour, from the time my alarm went off to the time I finally opened my eyes to reassuring sunlight.

The times we live in are not conducive to restful sleep. Although I have been sleeping through most nights, thank goodness, since the pandemic flooded the world, I often wake in a haze of angst. I’ll know the images of my dreams for a few seconds, maybe, then lose them in the light, in the prayers I recite upon waking, in the struggle to recall which day this is. Perhaps I should start writing them down when I wake, a practice I’ve used in the past to decipher myself.

Of course, my angst’s source is no mystery. Corona haunts us all. Deadly racism, the nightmare of too many fellow Americans of color, now demands attention from the rest of us, sleepwalking far too long. Our country is riven by rumors, conspiracies, distrust of difference. Our planet is suffocating. A free and fair election, my one hope for healing our democracy and saving our world, is in danger of disruption by those who place love of power over love of country.

Perhaps I forget my dreams these days because my conscious mind is protecting me. Why rehash in the day what I’ve already processed in the night? But my writer’s insistent curiosity wants to know: What is going on? What metaphor is my brain conjuring? What am I trying to tell myself?

I once heard an interview with the psychologist Frederick “Fritz” Perls, the founder of Gestalt therapy. He described each element of a dream as an aspect of the self. To understand it, he said, you query the element, you act out the elements in the dream. In so doing, the dreamer discovers her own interpetation. The answers can be surprisingly revelatory.

Unraveled, the dream can also become banal, the angst, simply a restatement of the known. Just as a fear that is faced is often defused, so, too, with dreams.

So, what am I trying to tell myself? In her book, The Third Reich of Dreams: The nightmares of a nation, 1933-1939, author Charlotte Beradt wrote of the dreams she collected from fellow Germans as the Nazis consolidated power:

Set against a background of disintegrating values and an environment whose very fabric was becoming warped, these dreams are permeated by a reality whose quality is unreal—a combination of thought and conjecture in which rational details are brought into fantastic juxtapositions and thereby made more, rather than less, coherent; where ambiguities appear in a context that nonetheless remains explicable, and latent as well as unknown and menacing forces are all made a part of everyday life.

One would think I’d be keeping a journal of this extraordinary period of history, when so much is at stake. Writing is intrinsic to my soul. But I haven’t been able to bring myself to do so. I don’t know why. Perhaps recording my dreams is the place to start.

This post was inspired by a collection of “20 Dreams for 2020” by the New York Times (June 12, 2020).

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: Jr Korpa