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Reflections on the Messy Complexity of Chronicity

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Smell

Stone Walls

Evelyn Herwitz · October 16, 2019 · Leave a Comment

I’m posting a day late, again, because of Jewish holidays, again—this time, the Festival of Sukkot, which began on a Monday and Tuesday this year. Al always builds our sukkah on our back deck. It’s a three-sided booth with pine boughs for a roof, where we eat our meals and visit with friends during the holiday. You have to be able to see the stars through the roof at night. Among many concepts, Sukkot is about recognizing the transience of life, our connection to the natural world, and gratitude.

On both afternoons, in sunny fall weather, we took long walks in the woods, savoring the light illuminating brilliant foliage as maples and birches flamed red and orange and gold. As we walked trails, leaves floated down like so many graceful hang gliders, en route to the forest floor.

The air smelled moist and rich. I picked my way carefully over gnarled tree roots and rocks, along pine-needle-carpeted trails that wound around old stone walls. Ever a feature of New England forests, these tumbled grids mark long abandoned pastures, hard to imagine now in such a well-established woods. But they got me to thinking about walls, so intensely referenced these days.

Which led me to reread Robert Frost’s Mending Wall, a poem with timeless resonance. A few verses (you can read the full poem here):

Something there is that doesn’t love a wall,
That sends the frozen-ground-swell under it,
And spills the upper boulders in the sun;
And makes gaps even two can pass abreast. . . .

I let my neighbor know beyond the hill;
And on a day we meet to walk the line
And set the wall between us once again.
We keep the wall between us as we go. . . .

One on a side. It comes to little more:
There where it is we do not need the wall:
He is all pine and I am apple orchard.
My apple trees will never get across
And eat the cones under his pines, I tell him.
He only says, ‘Good fences make good neighbors.’ . . .

Before I built a wall I’d ask to know
What I was walling in or walling out,
And to whom I was like to give offense.
Something there is that doesn’t love a wall,
That wants it down. I could say ‘Elves’ to him,
But it’s not elves exactly, and I’d rather
He said it for himself. . . . .

The stone walls we passed in the woods, what was left of them, were dark as the surrounding trees, speckled with golden leaves. No one has mended them for at least a century, maybe more. And no one has minded. What once was essential matters no more. Unseen, leaves drift to the forest floor.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, mindfulness, resilience

Mediterranean Musings

Evelyn Herwitz · October 8, 2019 · Leave a Comment


No doubt about it. The weather here in New England is getting colder. My blue fingers bear witness to fall, even as the trees are only just turning.

Sigh. I keep thinking of our wonderful vacation this summer in Greece, and especially our days on Crete. Hot and sunny days, jumping waves in the ocean—and some of the best food I have ever eaten. Well, I can’t fly back to Crete anytime soon, much as I would like, but I can replicate the flavors of that stunning island.

So, for Rosh Hashanah last week, I used a cookbook of Crete cuisine for our holiday meal. Among the dishes were homemade stuffed grape leaves, something I never would have thought of making before. Fortunately, our younger daughter was home for the weekend, and her very nimble fingers came in quite handy for rolling several dozen of the appetizers.

The recipe is actually quite simple. The filling is a combination of rice, lemon juice, olive oil, mint, dill, and onion; you can buy grape leaves by the jar and save the step of prepping them. Lots of recipes out there. The one we followed needed some adjustment in proportions and used uncooked rice (which cooks after the leaves are stuffed), but I’ve seen other recipes that use cooked or partially-cooked rice. Once you make the filling, you wrap a spoonful in each grape leaf, kind of like a mini-burrito. Then they all go in the bottom of a large pot, covered with water and a plate to keep them from floating. Twenty minutes later, they’re done. And delicious, much softer, more subtly flavored than the store-bought kind.

I was actually able to wrap one myself, despite wearing annoying latex gloves (an essential so I don’t infect my fingers while cooking), with floppy fingers that are longer than my partially amputated tips. But I’m going to try it again on my own sometime, because I want to see if I can really do it, and they make a great lunch. I still have a few left from last week, and they keep well in the fridge.

Best of all, when I eat stuffed grape leaves (with kalamata olives, of course, a perennial favorite of mine), I can better remember the blue Mediterranean skies and warm waves, the pleasure of a hot-but-not-too-hot day, our wonderful B&B hosts, and the joy of savoring every moment. That’s the best antidote to fall’s onset that I can think of.

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.

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Filed Under: Body, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience, travel, vacation

Summer’s End

Evelyn Herwitz · September 24, 2019 · 2 Comments

Here in New England, it’s officially fall. Time, alas, to let go of my favorite season. But we’ve been blessed with summer weather these past few days, a parting gift. Al and I took advantage of the 80s temps and sunny skies to enjoy a long afternoon hike on the Central Massachusetts Rail Trail.

It was a fitting way to savor the season’s end—as well as a meaningful way to appreciate the beauty in our own backyard, especially on a weekend marked by worldwide demonstrations to protest inaction on climate change and the deeply disquieting news that a third of North America’s birds have vanished since 1970, due to loss of habitat, declining insect populations, pesticides, and predators (read, cats).

The Rail Trail includes the ruins of a former woolen factory, its tumbled stone foundations enveloped by encroaching forest. A rusted turbine sits in a sun dappled clearing like an abandoned sculpture. The remaining wall of a dam presides over goldenrod. Nature has its ways, both subtle and severe, of reminding us that it will always have the last word. It’s long past time that we start listening, hard.

Please walk with me . . .

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell Tagged With: body-mind balance, exercise, managing chronic disease, mindfulness, resilience

View from the Acropolis

Evelyn Herwitz · September 10, 2019 · 3 Comments

Two days ago, I awoke at five to the sound of roosters crowing. It was our last day of vacation in Greece, at our last destination, the isle of Hydra (the ‘h’ is silent), and time to finish packing before our early morning ferry back to Athens. We had made a grand tour over two weeks, starting in the nation’s capital, then on to the island of Crete, then north to Thessaloniki, back down the peninsula to Delphi, landing on this Aegean jewel for our final weekend.

Neither Al nor I had ever been to Greece. I’d always wanted to see the Parthenon, the ruins of the ancient temple to the goddess Athena, atop the Acropolis of Athens. More than that, though, now seemed the appropriate time to visit the birthplace of democracy. With so much at stake here and abroad, I needed perspective and inspiration.

We found both. As one of our tour guides explained, democracy only succeeds when everyone participates. When citizens choose not to vote, not to be invested in the business of government, that is when demagogues step in to fill the vacuum. In fact, the ancient Greeks had a word for people who preferred not to be involved in public affairs: the transliteration is idiotes, which is the etymological root of idiot.

Make of that what you will. For me, walking through ancient ruins, contemplating the great civilizations that have come and gone, it became clear as the crystal turquoise waters of this stunningly beautiful country that we can’t take anything for granted. It’s up to each and every one of us to ensure that our democracy survives and thrives in these very challenging times.

Here are a few of my favorite images from our travels. 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: mindfulness, resilience, travel, vacation

And a Good Time Was Had by All

Evelyn Herwitz · August 20, 2019 · Leave a Comment

For years, Al has been telling me and our daughters about Woodstock. He was 18 in August of 1969 when he accepted an invitation from friends to drive from Massachusetts to Max Yasgur’s farm in Bethel Woods, N.Y., for what he thought was “some kind of arts festival.” Indeed. Amidst 400,000 others, he and his friends managed to plant their sleeping bags a third of the way up the hillside from the huge soundstage, with a great view of all the acts—except for Jimi Hendrix, because they left before he closed out the show, since they wanted to get back home and had tickets for his upcoming Boston concert. But that show was cancelled. A year later Hendrix died of a drug overdose. Al regrets the decision to leave early, to this day.

One of the acts he did see, close up, was the Saturday afternoon breakout performance by Carlos Santana and his band. So when we learned that Santana was headlining the Saturday evening fiftieth anniversary of Woodstock at Bethel Woods this past weekend, Al really, really wanted to go and share one of his fondest experiences with the three of us.

It took some convincing. I’m not a fan of huge crowds. Tickets cost nowhere near the $18 Al paid fifty years ago. (Really. He still has the ticket stub.) Affordable lodgings were hard to find. The timing was not great given other travel plans. And what if it rained? But it meant so much to my husband that I agreed. Our daughters were enthusiastically on board. I found us an Air BnB a half hour away, got tickets before everything sold out, and worked out all the logistics. And, boy, was it worth it.

The grounds at Bethel Woods Center for the Arts, now an established performance venue, are beautiful, bucolic, and immaculate. There is plenty of room to stroll around, even with a sold-out crowd. We spent the afternoon checking out the sites, walking down the hill to the spot where Al and his buddies listened to the ’69 show (this is no longer the concert area, but a well maintained lawn with the footprint of the original sound stage at the bottom), had our picture taken at the Woodstock memorial plaque (we got to the head of the line because Al was a “Woodstock Alum”), checked out some arts and crafts, snacked and stayed hydrated (it was very hot out), and listened to pre-concert performances scattered around the grounds.

Two hours before the concert was to start, we picked up our rented lawn chairs (you can’t bring your own) and waited with the crowd for the gates to open. Al found us a great spot, with an excellent view. Everyone was in a festive mood. Lots of tie-dyed outfits, flower garlands, bouncing beachballs, the scent of weed wafting in the air.

Fortunately, given uncertain weather forecasts, I’d also brought along four blue rain ponchos, which came in quite handy for several intermittent rain showers as we waited for the show to begin. I kept checking the radar on my cellphone, hoping the band of severe thunderstorms would continue to travel north of us. Which, thankfully, it did (although there were a few disconcerting bursts of thunder and lightening nearby).

The music did not disappoint. The Doobie Brothers opened for an hour-long set and got everyone on their feet, singing and dancing along to “Rockin’ Down the Highway” and other hits. Although they didn’t perform at the original Woodstock, they were certainly of the era, and can still rock with the best.

Dark skies overtook the event during intermission, but the rain wasn’t too intense and didn’t last long. Then Carlos Santana and his amazing band took the stage, and no one cared a whit about the weather. I have loved his music for years. A CD of Santana’s greatest hits, a mix of rock, blues, jazz, and Latin rhythms, was my antidote to stressful days when I was working in Boston years ago, and would ease my soul and rush-hour commute home on many an occasion.

The man is 72 years old, one of the finest rock guitarists in the world, and living proof that age does not define us. His wife, Cindy Blackman Santana, was featured on percussion, and is equally extraordinary. The band played for more than two hours straight, and we danced—ponchos on, ponchos off—through most of the show. It ended with everyone singing and swaying arm-in-arm to Santana’s version of a ’60s anthem, “Get Together” by the Youngbloods—still as relevant all these years later. The moon emerged from behind clouds. Fireworks closed out the night. We had a spectacular time together. Al said it far exceeded his expectations.

And what, you may ask, does this have to do with living with scleroderma? It’s about living, folks. As is my way, I stressed too much about stuff that never happened, which drove me to plan appropriately for stuff that did happen (rain, getting a good parking space, avoiding after-show traffic). I didn’t get enough sleep. But the show was fantastic, I slept very soundly Sunday night, and I’m so glad I let Al talk me into going. And yes, I thanked him.

Here’s to what’s left of summer, for those of you in the Northern Hemisphere—or the end of winter, for those down under. I’m taking my annual summer break for a few weeks, and will be back in mid-September. I hope you can make your own great memories. Carpe diem.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: anxiety, body-mind balance, resilience, travel, vacation

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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