Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

 

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

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

As the Rain Approaches

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The wind is blowing outside as I write on Monday afternoon. Yew boughs bounce and bend. A slight chill seeps through the floor of my converted-porch office. Beyond bay windows and walls, rushing air ebbs and flows with a whoosh and sigh, whoosh and sigh, like the sea, like a giant’s lungs.

The Earth breathes. I breathe. Every morning when I awake, I say a prayer of thanks that my lungs fill with ease. Each breath feels delicious, comforting, the most basic reassurance that I am alive and still healthy while mired in pandemic time. I meditate and follow my breath and observe how each inhalation and exhalation is so different and unique to that precise moment while at the same time so unremarkable as to be forgotten in the next.

Yews boughs bend and bounce. I watch for a cardinal or blue jay to brighten the branches that have turned gray-green in the pearly light of approaching rain. But they are wise to the weather, tucked into their nests or other hiding places to ride out the storm. Somewhere nearby, I can hear a bird singing, but don’t know enough to recognize the vocalist.

No bird answers. A car sweeps past. A siren wails in the distance. My ears ring with decades-old tinnitus that I usually ignore. It is a constant internal concert of rushing, high-pitched tintinnabulation on the right, countered by a deep, soft lowing on the left. It becomes more insistent in stillness, an irritant that I normally brush away with music or conversation or concentration.

On this pearl-gray afternoon, however, I don’t mind its reminder—that I am still here, sitting at my desk, pondering the next phrase, as the wind rushes outside, and the birds find refuge, and the rain approaches.

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: Mahkeo

Are We There, Yet?

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Yesterday I wrote to our Air BnB host that we were cancelling our June weekend trip to Block Island. I’d been looking forward to this family get-together for months at the perfect summer home in a remote part of our favorite place off the Rhode Island coast. But the state requires 14-day self-quarantine for travelers from out-of-state, the virus is still surging here in Massachusetts, and I cannot imagine that, even if restrictions are lifted in a month, it will really be safe to go there on the ferry.

Call me risk averse. I consider it an asset, these days. So far, as I write, I’m very grateful that our family remains healthy and safe in our respective homes. Others in our friendship circle are not so fortunate, which is both deeply concerning for their well-being and scary. I feel the virus encroaching and a need to be ever more vigilant.

Confinement, so necessary, is taking its toll. Some days it doesn’t bother me, and others, it feels like a blue funk that I can’t shake. Obviously, this is nothing compared to the terrible struggles others are facing, fighting the virus itself and the economic hardship it has wrought. But the feeling is still real, and, as Brené Brown points out in this episode of her thoughtful “Unlocking Us” podcast, denying your feelings because others are suffering more doesn’t really help anyone. Our capacity for empathy and supporting others is intricately linked to our capacity for self-care. So, I’m trying to give myself some space to feel what I’m feeling, without getting sucked into a black hole.

Connecting with family and friends certainly helps, but I am hitting my limit with Zoom get-togethers. I find them exhausting when there are a lot of people involved.  “Zoom fatigue” or “Zoom burnout” is real, a phenomenon triggered by the inability to read non-verbal cues on a video chat, as well as the need to be “on” for the whole call. I have used Zoom for years for business, and it’s a great tool that makes me feel closer to my clients. It saved our Passover seder and has enabled us to catch up with family long-distance. But I’m finding that I need to pace online group get-togethers so I don’t feel so drained. One-on-one is easier, and not an issue.

Getting outside whenever the weather is good is essential for me. We had another gorgeous weekend, and Al and I took advantage with another hike, this time to Purgatory Chasm State Reservation not far from home, so named because of its huge, tumbled boulders and rocky trails. I found the going tougher, and there were more hikers, so it was less relaxing. But it was still good to get out in the woods again (albeit necessary, now, to start checking for deer ticks).

Making stuff helps, too. I sewed three more masks on Sunday out of tea towels. Cleaning the house is a meditation, making order out of chaos. Keeping up with my German homework taps a completely different part of my brain and gives me a sense of accomplishment as I learn and remember more.

Most of all, however, what’s keeping me sane is writing. I finished the third draft of my novel last week (more rounds to go, but a milestone, nonetheless), and started a new short story. The act of writing completely transports me to a mental space where time dissolves, I’m  absorbed in my imagination and words, and I can call all the shots.

Real life is not so accommodating. “We’re all in this together” is beginning to wear thin, but is all the more true. I’m trying to do my part, even as I yearn for normal, whatever that will mean when we are truly able to resume work and socializing in person. And so I sit here and write to you, Dear Reader, and hope that you have found relief from your own cabin fever that is fulfilling, safe, and considerate of all those around you. We have a very long way to go and need all the resilience we can muster 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: Ryan McGuire