Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

vacation

Home Improvements

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If it weren’t for Covid, this week would have been abuzz with final trip preparations. We had hoped to go to Eastern Europe this summer to trace Al’s ancestry, with a side visit to see the town where my great grandfather Harry Herwitz lived. All that is now on hold (in one sense, a good thing, because the Herwitz family came from a town not far from Minsk, in Belarus, which, if you’re following the news, is in political turmoil over their election last week).

So, instead, we’re taking time off to work on our home. Last week we took care of some important electrical system repairs. There are leaking skylights to replace and a leak in my office roof (a converted porch), some painting to do, and a kitchen floor to refinish. We have some redecorating plans, too, which involve a lot of decluttering. Not exactly fun, but I’m hoping that by really focusing on all this stuff that we’ve put off for far too long, our home will be more organized, comfortable, and cozy.

Given that we’re all spending more time at home these days, it’s a worthy goal.

Over the weekend, I was listening to a podcast interview with Pico Iyer, who is a wonderful, thoughtful travel writer. He was speaking about how his travel has become more limited during the pandemic, and how it has brought him to appreciate his immediate surroundings much more. I have found myself doing the same, even on my walks around the neighborhood. Every time I walk, I see or hear something that I missed before—a purple door, a fairy garden, the chatter of katydids. These are welcome surprises.

We’ve had some unwelcome surprises as we’ve begun our home improvement projects, including the discovery of a main electrical cable with completely exposed wires due to rotted insulation. But I’m very grateful that we found out, and it’s now been replaced. That’s what happens when you start to pay attention to what’s been right under your nose all along.

So, I will be off next week, exploring the familiar with heightened focus, maybe taking some day trips, also. I hope you, too, are able to make the most of these last weeks of August in Covid Time. Back in September. Be well.

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: Debby Hudson

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

Mediterranean Musings

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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.

View from the Acropolis

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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.

And a Good Time Was Had by All

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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.