Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

Mediterranean Musings

· · 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.

View from the Acropolis

· · 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.

And a Good Time Was Had by All

· · 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.

Great Escape

· · 9 Comments

As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of 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.

Time Travel

· · Leave a Comment

It was just two weeks ago, on Monday, that I flew home from Florida after meeting my cousin and her parents for the first time. But it already seems much longer. That’s one of the strange aspects of time and distance: You can go away and feel completely immersed in a new place, with new people, and then return home, where it feels like all that was a dream.

But it most certainly was real. Last fall, out of the blue, I received a message from my second cousin. Her mother, who is now 95, was my mother’s first cousin; her grandmother was my grandfather’s younger sister. Our mothers grew up together in Berlin, but went separate ways when my mother and grandparents immigrated to America in 1936. My cousin’s side of the family moved to Bulgaria and waited out the Second World War until 1948, when my grandfather sponsored them to come to the U.S. Like me, my cousin was born in the States. Her family settled in the Midwest, and mine eventually made a home on the East Coast.

I knew of her, and she knew of me, but for reasons that neither of us could figure out (“Why have we never met?” was one of the weekend’s refrains), our mothers never saw fit to get together as adults. They did, however, maintain a robust email correspondence in their seventies, which ended with my mother’s death in 1999.

Fast forward to the recent past, when my cousin moved her parents (her dad is 94) from their Indiana home to Florida, so that she could care for them close by. In the process, she discovered a treasure trove of family pictures and other memorabilia. And, fortunately for me, she couldn’t bear to toss any of it. She wondered if I or my sister might want some of the photos, poems written for special occasions, wedding invitations, death notices, steamship manifests, greeting cards, thank you notes, and more. A determined researcher, she found me and took a chance on making a call.

Since that initial contact, we’ve been emailing back and forth. I asked if I could meet her and her parents, and received an enthusiastic yes. So, I went. We hit it off immediately and stayed up late each night talking about family and all that we have in common. Her husband was out of town, and two grown sons off on their own, so we had the house to ourselves. It was wonderful to spend time with her parents, too; we had great conversations about family history and even spoke a little German. And my cousin and I got to the beach.

So many photos, so many memories, so many stories. There were pictures of my grandfather’s youngest sister, who died when she was 26, before the War. I had always heard of her, but never known what she looked like. There were pictures of my grandparents as a young couple, and of my grandmother as a girl with a huge bow in her hair. There was a poem that my mother, then an infant, supposedly wrote on the occasion of a family wedding. There was a picture of my grandmother tending my mother as a baby. There was a family tree with information my cousin had gleaned as a high school student from her grandmother, which filled in some missing puzzle pieces.

There were also many photos of people I did not recognize. My cousin still hopes to find out their identity. She feels a pull to honor their memory. And harbors a deep wish not to end up as a nameless person in an image, whom no-one recognizes. It was a poignant observation, all the more relevant in this digital age, when it’s so easy to point and shoot and amass thousands of images in the cloud, to live forever as bits of anonymous data.

It is strange how sepia-toned photographs call to us across time and distance. I stare at these images of my German relatives and wonder—what were they thinking when those photos were taken? What did they know of the coming storm that would force them to make the most difficult choice imaginable, of leaving home to escape such horrific danger? They look so innocent, so content in their familiar world.

And I wonder: how would our lives have been different if my cousin and her family had known mine, growing up? I’ve always wondered what it would be like to have a cousin. Both my parents were only children, and our extended family was very small. At least, now, thanks to my cousin, I can find out.

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.