Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

stress

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

High Wind Warning

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Monday morning. I awake to wind, rushing and subsiding, like an angry tide. A quick check of the weather forecast on my phone reveals high wind warnings all day, with gusts over 50 miles per hour throughout the afternoon. I have to drive into Boston for an evening class. I imagine a tiring commute, fighting the wind, but am determined to go, despite plummeting temperatures.

As I make the bed and bandage my chronic thumb ulcers, I listen to the The Daily podcast by the New York Times. Today’s topic: whoever controls the incipient 5G network, which will integrate all things hooked to the Internet—self-driving cars, smart TVs, home security systems, communications networks, the power grid, artificial intelligence, our brains—will basically control the world. This is the new Cold War. The wind howls outside. I sit cross-legged on the floor, try to quiet my mind and meditate.

While cooking oatmeal and boiling hot water for tea, I call the lab that has sent me two invoices for recent bloodwork stating that we owe $150 because the claims were rejected by our insurance. This happened while our COBRA administrator had not yet told our insurance company that we had renewed our policy back in January, so I have to get the lab to resubmit.

I work my way through their phone tree until I reach the customer service line, which promptly puts me on hold. I put the call on speaker and stir the oatmeal. Winds rush through trees and around corners. I sit down at the kitchen table, sip my tea and begin to eat my comfort food. Peppy music crackles through the phone, interrupted momentarily by a male voice: We apologize for the delay. A customer representative will be with you soon. Your call will be taken in the order it was received.

Over the cycling music, another male voice cheerfully ticks off all the possible lab tests I could consider: prenatal screening with a non-invasive blood test that could inform expectant parents of any chromosomal abnormalities at ten weeks, an eight year risk analysis for diabetes, a comprehensive heart health profile. I wonder about lab test results in a world of 5G interconnectivity. Who will have access to what about me in the future? Who does already?

Eight minutes in, a woman takes my call. She asks for the invoice number, my name, address, insurance policy ID, group ID (name, rank, serial number). I answer. She goes silent. The wind rushes outside the kitchen windows. She tells me to disregard the invoices and that the claims will be resubmitted. I hang up, finish what’s left of my oatmeal, rip the invoices in half and text Al the good news.

I think about the bits of data shooting from my fingers through the Internet to his phone. I think about the digital footprint of this blog, drifting forever in cyberspace. I think about a video clip of three horses galloping away from a swirling wind turbine, seconds before it disintegrates in a powerful storm. As I type, the evergreen boughs of the yew beyond my office window chop and sway in the rushing wind.

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: Benny Jackson

What I Want

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I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us all.

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 Credit: Zoran Kokanovic

Storm Tracking

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I’ve been staying indoors for much of the past few days. First, we were hit with single-digit, bitter cold and wind. It’s sunny out as I write on Monday afternoon, but still too cold for a much-needed walk. And by this time on Tuesday, I expect to be watching snow swirling and piling all around as a Nor’easter sweeps up the coast. We’re due for 12-18 inches, maybe more.

So much for gliding into spring.

My hands have certainly had enough. Four fingers on the right hand, three on the left, bandaged up because my ulcers and cracked skin won’t heal in cold, dry air, even with the heat on and plenty of clothing layers. I really wish I could use one of those Sick Bay gizmos on the original Star Trek, wave it over my hands and make the ulcers go away.

I wish I could do the same to solve the terrible discord in our country. I read and read and read, trying to stay on top of all the news without driving myself insane. Staying informed is the essential first step. Balancing how to manage my health and energy and anxiety level as I debate how to get involved in preserving our democracy has become a major preoccupation.

What to do? What to do? When we were kids, my older sister used to write comics with a stick figure girl (you could tell because she had a triangle for a skirt) who would ask that question and then, in a lightbulb flash, always declare I have it! with a ready solution to the dilemma. I can’t recall any more of the story lines, but they always made me laugh.

No quick solutions to our national crisis of conscience, no magic tricorder for my hands, no way to avoid a Nor’easter hurtling our way. Nothing to do but sit and watch the snow fall. I will remind myself to be grateful for our warm house and secure roof and full cupboards, for doctors who care about me and insurance to pay for it all. I will give myself permission to plan my personal political commitment in my own time, rather than over-reacting to the outrage du jour. And I will seek comic relief.

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.

Image Credit: Jude Beck

Election Season Survival Kit

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12522068044_b73c88f4e9_zToday is Super Tuesday, and here in Massachusetts I’m headed to the polls to cast my ballot in the Presidential Primary. I’ve become a political junkie this election season. So much hangs in the balance for our country.

I do my best to keep on top of political news and analysis, but being a responsible citizen is also raising my blood pressure and keeping me awake at night. This is not good for anyone, whether you have scleroderma or not.

So I’ve discovered a few antidotes to election season stress, which I share with you, Dear Reader, in the hopes that we all can keep our sanity while doing our civic duty, staying informed and voting:

  1. Get the facts. Forget the misinformation, innuendo, insults, lies, Twitter rants and Facebook memes that have characterized this race so far. Find a reliable source of balanced reporting that goes beyond hyperventilating pundits and hysterical headlines. I recently discovered Nate Silver’s 538 website, which provides insightful, nuanced election analysis through a careful examination of polling data. It’s solid reporting. Reading their posts each morning helps me breathe and stay focused.
  2. Exercise. There is nothing like a walk in fresh air to clear my head of election season angst—that, and my Pilates class, or walking the indoor track and riding the bike at the gym. I can’t recommend it highly enough, whatever your favorite form of exercise. Just do it.
  3. Listen to great music. When I feel like I’m getting too wound up or depressed about the latest outrageous political headline, I immerse in wonderful music. Here’s one of my favorites, Gershwin’s Cuban Overture, performed by Lorin Maazel and the Cleveland Symphony (click on the link if you can’t see the embedded video):
  4. Watch Fred Astaire dance with Ginger Rogers. Simply the best, guaranteed to make you smile, regardless of what’s weighing on your mind, political or otherwise. Here’s a number from their 1936 classic, Swing Time, a great tap dance to “Start All Over Again” (again, just click on the link if you can’t see the video here):
  5. Look for the good in others. Despite all the darkness and truly depressing news we hear every day, and all of the candidates’ dire predictions about the future if we don’t heed their warnings, there are still good people out there doing good things. Keep perspective with a dose of positive stories from sites like David Freudberg’s Humankind.

None of this is to say we shouldn’t take this presidential election seriously. This is certainly the most important presidential race of my lifetime, one that will define the direction of this country for years to come. It’s never been more crucial to be an informed citizen and participate in the electoral process.

But it’s also essential not to get swept up in all the Sturm und Drang—especially when you’re managing a chronic disease like scleroderma that’s exacerbated by stress.

Hope this helps. And God bless America. Please.

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.

Image Credit: DonkeyHotey via Flickr Creative Commons