Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Standard Time

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So, we set the clocks back this weekend, and the days feel much shorter—even though the amount of daylight is actually only a few minutes less than it was before. It’s all relative. How you perceive length of days depends on  how the rising sun and impending darkness encircle your waking, working, active hours.

Even as I know this, the shift to an earlier sunset always feels claustrophobic. My body has to adjust. The older I get, the less I’m convinced that switching the clocks is really necessary. It’s an artificial imposition on nature’s true rhythms.

But this is just howling at the moon. I try to remind myself that our reversion to standard time also means that in a few weeks we will arrive at the winter solstice, and the days will grow longer, once again.

The earth spins, the pendulum swings, the tides ebb and flow. Election Day has finally arrived, and tomorrow, whatever the outcome, the sun will still rise and set. I try to remind myself that the longest nights eventually give way to more daylight. I try to remind myself that change is the only constant.

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: United States seen from orbit photo by NASA

Savory Summer

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Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

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: Aron

What Comes Next

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This Friday marks the one year anniversary of my hands falling apart—literally. This is not easy to think about, even as I’ve been recording my experience and its aftermath these past twelve months. It makes me cringe.

At the same time, I’ve grown quite accustomed to my “revised” hands. I was noticing this the other day when I was working on a sewing project. I had no trouble negotiating my sewing machine, handling the fabric, moving my fingers around the needle and presser foot, winding the bobbin, pinning and unpinning. I still have to be mindful of how I position my hands, but mostly it’s become second nature.

Remembering how all this started, however, is scary. I had no idea what I was in for, and it was not only painful when my very severe ulcers lifted up to expose bone, but also revolting. I don’t think I fully allowed myself to acknowledge that at the time. Some kind of internal coping mechanism, combined with my writer’s indefatigable inquisitiveness, took over. (“Oh, wow, that’s what my knuckle bones look like!”)

Fortunately, in this case, curiosity did not kill the cat but enabled her to persevere. I didn’t let my deteriorating hands stop us from taking an extraordinary trip to Iceland and Norway; in fact, as I wrote at the time, it propelled me to seek out beauty to boost my courage for whatever lay ahead. I benefited greatly from my very supportive husband, without whom that trip would have been impossible.

August is just around the corner, and we are a few weeks out from another trip abroad. I am very grateful that my hands are in relatively good shape at present, with only two bandages, including one on my right thumb that is protecting an exposed clump of gray calcium that has yet to exit the finger pad. I am debating whether to ask my hand surgeon to remove it for me or just let nature take its course. My nose is healing from surgery two weeks ago. I am praying that we will avoid any health issues or other emergencies this year.

There is just no way to know what comes next. I can only hope that my well of resilience remains deep. I hope the same for you, Dear Reader, wherever your summer travels may take you.

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: David Monje

Operating Instructions

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This one’s short.

In Anne Lamott’s Operating Instructions, a memoir of her son’s first year and her struggles as a single mother, she recalls this anecdote about writer’s block:

. . . I remembered the other day a weekend I spent with my family at our cabin in Bolinas when I was seven or eight and my older brother was nine or ten. He had this huge report on birds due in school and hadn’t even started it, but he had tons of bird books around and binder paper and everything. He was just too overwhelmed, though. And I remember my dad sitting down with him at the dining table and putting his hands sternly on my brother’s shoulders and saying quietly, patiently, “Bird by bird, buddy; just take it bird by bird.” That is maybe the best writing advice I have ever heard.

Lamott went on to write, among other books, Bird by Bird, which is, indeed, one of the best writing books out there. But her father’s advice applies to many other situations, too—when there’s too much to do, too many deadlines, too many uncertainties, too many worries, just too much stuff. Nothing big and complex and important ever gets solved or resolved in short order, be it creating a work of art, managing a chronic disease or anything and everything in-between. Bird by bird.

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: Rafael Rodrigues Machado

Interlopers

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Mid-July, and it’s hot in Central Massachusetts. High ’90s last week, and so humid that it felt as if you were swimming, far-too-far from the beach. What a relief when thunderstorms passed through on Friday to clear the air for the weekend.

Friends have asked me if I’m enjoying the heat. They well-know my aversion to cold. But, I tell them, even I have my limits. My happy place is mid-80s with low humidity and a light breeze. So it felt very good to take a walk around the neighborhood Monday afternoon, in precisely those weather conditions.

Only a few other people were outside—a kid on a bicycle, a lawn crew, a boy shooting baskets in his driveway. Just me and the birds and the gypsy moths. The latter seem to be reveling in their last week of life, flitting around tree trunks, plastering bark with tan egg masses that will become next year’s scourge of very hungry caterpillars.

Our city’s trees have been hard-hit, especially oaks. If we get enough rain this season, we may avoid more defoliation next summer. The caterpillars’ only natural control is a fungus that has died off in recent years, due to drought. It’s making a slow comeback, and this year’s infestation is not as bad as last, but conditions have been too dry for Mother Nature to hold the insects fully in check.

As a little kid, I used to do my part. I loved to collect caterpillars and let them crawl all over my fingers (at least until whatever they secreted made my skin peel). Then I would put them in glass jars along with twigs and leaves, poke holes in the metal cap, and imagine they were my pets. They would inevitably die of suffocation.

Walking on Monday afternoon, I wondered how something so beautiful could be so destructive. There’s a marvelous felicity about these moths, how their papery wings glow golden in the sunlight. They brush your skin like a dainty feather. When they first hatched from their pupae last week, fluttering outside my office window, I mistook them for butterflies.

Well, butterflies they are not, and I am hard-pressed to understand what possible positive role they fill in the ecosystem. Same goes for mosquitos. Ditto for rare and chronic diseases, plant-borne and human.

Regardless, nature’s balance deserves—no, demands—our respect. Our lives depend on it. On Tuesday, the temperature creeps back up near 90. I hope we get some rain.

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.