Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Choose Humanity

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I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.

Cutting Loose

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As I’ve written a few times over the years since I began this blog, packaging is the bane of my existence. On Monday morning, I was wrestling with a plastic package for a nasal spray that I use occasionally to clear my sinuses and reduce post-nasal drip and related cough. The thing was hermetically sealed. No way to open it without a pair of sharp scissors. And even that was a struggle. I ended up cutting off one edge, then slicing straight down the middle of the plastic, then adding a diagonal cut to release the treasure so ridiculously enclosed. Throughout this mission, I had to be careful not to hurt my fingers on the sharp edge of cut plastic.

Why is this necessary? Are the manufacturers that fearful of someone opening their precious package in the store and stealing the goods? As it is, you can’t even access this product in a CVS or Walgreens without summoning a sales clerk with a set of keys to open the plastic-covered shelving, which has become ubiquitous in recent months to prevent shoplifting (another dubious trend).

And must we really rely on so much plastic for packaging? All that discarded plastic eventually breaks down into microplastics, which have worked their way into the global ecosystem—and our bodies. Microplastics, defined as less than 5 millimeters across, have been documented in human lungs, maternal and fetal placenta tissues, human blood and breast milk. They have been detected on the top of Mount Everest and in the depths of the Mariana Trench. They are in the air, our food, our water. Here’s a really thoughtful overview of the extent of microplastics’ spread from Science News.

While research into the health impact of ingested microplastics is not yet definitive, there is ample reason for concern. At the very least, according to research immunologist Nienke Vrisekoop of the University Medical Center Utrecht, microplastics are a form of air pollution. We know that familiar forms of air pollution, such as smog and car exhaust, stress our lungs. Vrisekoop, who is quoted in the Science News article, expects the same will be true of microplastics.

What to do? We can’t avoid plastics altogether, not yet, anyway, but at least we can try to reduce their use in our daily lives. I’m looking at you, bottled water. I may not yet have an alternative to that nasal spray, but I’m considering writing to the manufacturer to let them know what I think of their packaging. And of course, recycling plastics is a no-brainer.

There’s a famous line in the 1967 film The Graduate, when a very young Dustin Hoffman, at a college graduation party hosted by his parents, is advised of the one word that should define his future: “Plastics.” Indeed, it has defined all of our futures. Just not in the way we expected.

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: Naja Bertolt Jensen

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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.

Birthday Jaunt

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Covid over (despite a scare last Monday when I developed a sore throat that, fortunately, resolved on its own), Al and I celebrated my birthday last Wednesday and Thursday with a quick trip to New Haven and New York City. My goal was to see a couple of art exhibits, one at Yale and the other at the Neue Galerie in Manhattan. The weather was sunny, the art stunning, the food excellent.

We stayed overnight in New Haven at a hotel that functions solely on electricity and is fossil-fuel-free, the Hotel Marcel, named for Marcel Breuer, a Bauhaus luminary who had originally designed the building as the corporate headquarters for Armstrong Rubber Co. Converted to a hotel with a commitment to sustainability and many curated Bauhaus details, it aims to be the first certified “passive house” hotel in the U.S. by the end of next year.

So, it was a fascinating trip, on many levels. Here are some of my favorite pieces from the Yale Art Gallery (no photos allowed at the Klimt landscape exhibit at the Neue Galerie). Photo above is one of my favorite NYC views, the constellation mural and lights on the ceiling of Grand Central Station. Enjoy!

Edvard Munch, Toward the Forest I, 1897
Ernst Ludwig Kirchner, Schlemihl’s Encounter with His Shadow, 1915

Joan Miró, Jeune fille s’evadant (Girl Escaping), 1968
El Anatsui, Society Woman’s Cloth (Gold), 2006
Paul Klee, Heitere Gebirgslandschaft (Joyful Mountain Landscape), 1929
Wassily Kandinsky, Mit baumtem Kreis (Multicolored Circle), 1923
Josef Albers, Skyscrapers A, ca. 1929

 

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.

Best Laid Plans Department

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And so, despite my best efforts, I did get Covid last week, after all. In fact, I tested positive on Tuesday afternoon. At first, I thought it was just allergies. All the trees have finally bloomed here, and pollen is in the air.

Just to be sure, though, I took a test. When I first looked at the results, I thought I was still okay, but there was the faintest positive stripe. So I repeated it. Same thing. And by evening, I didn’t really need to doubt it. I was starting to get chills, and my throat was swelling.

By morning, I felt truly rotten. No fever, but all the symptoms I get with a virus, especially severe Raynaud’s and joint aches and headache and sinus congestion. My hands felt like blocks of ice, and it took at least a half hour of huddling under blankets and meditative breathing to regain feeling. I called our primary care nurse practitioner’s office, and by midday I’d gotten the go-ahead to start Paxlovid.

This is the second time I’ve caught Covid. Last time was two summers ago, right before we were supposed to go on vacation, causing a total reorganization of travel plans.

This time, it hit right before my 70th birthday and Passover, which begins tonight. So all plans for both had to be scuttled and rethought.

Thanks to my wonderful daughters and husband, my birthday turned out to be a lovely celebration, despite being sick. The Paxlovid kicked in enough for me to feel somewhat better when I woke on Thursday—and discovered in my email a gift certificate from the family, orchestrated by my daughters, for an Air BnB writing retreat, good for anytime I want to go. In addition, my younger daughter had created a fantastic 70th birthday video with greetings from family and friends, including some people I had lost touch with over the years. It gave me a great boost and is a wonderful keepsake.

Al brought home flowers, and later, he picked up a nice dinner from one of our favorite restaurants to eat at home. So, I felt fully celebrated and grateful—and resilient. Take that, Covid!

We’ve had to upend our Passover plans, because we are just barely clearing the hurdle of having to mask in public (five days after you feel better, have no fever and no symptoms). So we are doing a Zoom seder with our immediate family for the first night, and just me and Al, the second. It’s a small and quiet holiday this year. Given my energy level post Covid, that’s just fine. Cooking for just the two of us on Sunday wiped me out.

The one bright side of this, as my Boston Medical rheumatologist said to me weeks ago when we were discussing pros and cons of a spring Covid booster shot, now that I’ve had the latest variant, most likely JN.1, I’ve gained some protection against it. At least, I sure hope so. This virus is not to be messed with, especially for those of us with compromised immune systems.

And so, Dear Reader, I hope you stay well and avoid Covid. But if it nabs you, be sure to ask for Paxlovid. It significantly reduces risks of the virus and really made a huge difference for me. The most recent research says chances of rebound are slim. It makes your mouth taste bitter, but that’s a small price to pay.

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.