Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Orchidstration

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Monday morning, while readying for the day, I was listening to a podcast interview by Krista Tippett with the celebrated children’s author Kate DiCamillo. In a wonderful, deep conversation, they explore the “mysterious fact that hope and heartbreak live so close, side by side, in real life,” and the power of story to make that bearable. Maintaining a sense of wonder in the world, well past childhood, is key. You can find the interview here.

In that spirit of wonder, I share my photos from last Friday’s visit with Al to Tower Hill Botanic Garden. Their spectacular orchid show gave me a lift, and I hope it will for you, too. Enjoy.

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.

Stress Test

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When I was in elementary school in the ’60s, we used to have air raid drills. We would file out into the hallway, kneel down, put one arm under our foreheads and the other covering the backs of our necks. And wait for the all clear. Pretty ludicrous, as were the supposedly reassuring cartoon films we were shown about how to stay safe in a nuclear attack.

One day, when I was in fifth grade, our entire school marched down to the local air raid shelter for a tour. We held hands with the first graders, and the six graders escorted the kindergarteners. We all thought it was pretty neat—staying there would be like a camping trip! Our teacher, however, was so concerned for our well-being that he just let us just play and have fun the next day. We got pretty rowdy by afternoon, and he ended up yelling at us.

We all express stress differently.

That we could be seriously discussing the risks of a nuclear war, today, is beyond belief. In Ukraine, enemies battle over control of a nuclear reactor and bombs drop out of the sky onto schools. As I watch the news, I am at a loss for what to do, other than make contributions to legitimate NGOs that are assisting innocent victims of this unwarranted tragedy.

I feel extraordinarily fortunate to live in a place where my most difficult decision in all this is how much news to consume. I am trying to find the balance between staying informed and drowning in the deluge of tragic reporting. I don’t want to look away, but I also need to take care of my own health and well-being, or I’m of no use to anyone.

So, I am trying to be grateful—for family and friends, a warm bed, a home to call our own, a peaceful neighborhood, money in the bank, freedom of speech, the right to vote, so much more. If there is any lesson to be learned from these terrible times, it is never to take anything for granted.

I’m also trying to follow this wise advice from Oliver Burkeman’s “The Imperfectionist” monthly email. You can find his entire essay here:

“It’s been common in recent days to see people complaining that it’s hard to get any work done, or to get on with ordinary life in general. But this may be the moment for a judicious measure of tough love. Perhaps you just need to get on with things anyway! If you wait, instead, for all the existential threats to pass, all the desperate human suffering to subside, you’ll be waiting forever.

“So don’t wait. Not just because marinating in the news helps no-one, but because what you’ll be doing instead—meaningful work, keeping your community functioning, being a good-enough parent or a decent friend—that stuff actively does help. There’s something you’re here to do. And I highly doubt that it’s doomscrolling.”

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: Screenshot from “Duck and Cover” film, 1952, via Wikimedia Commons.

Awaiting Sunrise

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On a cold winter’s day, I’m thinking of sunflowers. Beautiful, hardy, bright sunflowers have been linked to scleroderma awareness, first in Australia, and now worldwide, symbolizing the sun’s warmth that brings so many of us comfort. At each sunflower’s center are thousands of tiny disc flowers that mature into seeds— symbolizing seeds of knowledge and the quest for a cure.

Sunflowers are also the national flower of Ukraine. Every summer, golden fields of sunflowers blossom across the country, which is the world’s largest producer and exporter of sunflower seeds and sunflower oil. The distinctive bloom is woven into wreathes for celebrations, painted on walls and furniture and folk art.

Before they fully mature and open, sunflower heads follow the path of the sun across the sky and come to rest overnight facing east, awaiting the next sunrise. Various religions have associated the sunflower with spiritual knowledge and a quest for truth and enlightenment. It is an inherently optimistic flower.

So I hold onto that as I have struggled to concentrate this past week, watching the brutal Russian invasion of a sovereign nation unfold. Great bravery and courage inspire. I pray that innocents will be spared, and that Ukraine, with the support of the world, will ultimately prevail.

And to plant more seeds for scleroderma awareness and research, I offer this: The biennial Systemic Sclerosis World Congress, a virtual gathering due to the pandemic, opens next week, on March 10, bringing together experts from around the world to share their work. There is a free Patient Congress, as well, from March 11-12, with presentations by international specialists on many aspects of living with this complex disease. Registration closes on March 7. You can find more here.

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: David Travis

February Thaw

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I was finally able to take a walk Monday afternoon around my neighborhood. The sun was bright, the sky a robin’s-egg blue, temps in the mid ’50s, and my thumb had healed enough so that I could swing both arms without the pain of gravity’s pull on a swollen finger.

All good.

The snow from a recent storm and subsequent snow showers had mostly melted, sending water trickling through storm drains. A mourning dove cooed plaintively from a nearby rooftop. As I walked, the too-tight muscles in my back began to relax. Annoying chatter in my mind quieted, and I focused on what I saw, heard, smelled . . .

Hints of green amidst bleached grass.

A watchful dog’s bark.

A power drill’s whine.

A passerby’s hello.

Tiny buds on tree branch tips.

Hockey sticks slap slap slapping.

Overhead a private plane’s purr.

Wood smoke’s tang.

Sparrows’ chatter.

Sneakers’ scrunch.

Spring can’t come too soon.

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.

Incantation

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A couple of weekends ago, before the Nor’easter that dumped 15 inches of snow on our fair city this past Saturday, I cleaned up my office. It was approaching the point of no return, with too much stuff on my desk in piles, and not enough room in my second bookcase to store everything (the first one being full).

Rearranging some stuff made more room in the bookcase, which enabled me to clear more of my desk, so I now have a nice, uncluttered (relatively speaking) place to work. I’ve also been rediscovering a few gems I had forgotten or just couldn’t see because they were under or behind other stuff.

Among those items is a little wand. It’s made of hard, clear plastic and is filled with some kind of liquid and multicolored sequins shaped like stars and crescent moons. When you tip it one way, then another, the sequins spin and tumble back and forth. It’s quite relaxing, mesmerizing, to play with. Almost magical.

It would be nice to own a real magic wand, one that I could wave and make all the Sturm und Drang of the pandemic, climate change, politics, scleroderma, and everything else stressful and scary to just go away.

It would be nice.

But the only real magic comes from effort and persistence and a determination not to let the harshness of this world in the 21st century squeeze out the beauty and joy and goodness that is everywhere, as well.

Hiding in another spot on my desk was a sticky note with this quote that’s attributed to Johann Wolfgang von Goethe:

“Whatever you think you can do or believe you can do, begin it. Action has magic, grace, and power in it.”

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.