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Reflections on the Messy Complexity of Chronicity

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vacation

By the Sea

Evelyn Herwitz · December 13, 2022 · Leave a Comment

Last Friday marked our 38th wedding anniversary, and instead of the usual dinner out (often a challenge around the holidays) or maybe a concert or a show, we decided to escape for the weekend. I love discovering new places to visit, and we both love the ocean, so this time we ventured to the Connecticut shore, to Niantic, a coastal village within the town of East Lyme.

There we discovered a lovely boardwalk (actually, it’s made of concrete) along the shoreline, a park on a bluff overlooking Niantic Bay, and some great restaurants. Niantic Bay links the Niantic River to Long Island Sound, which (I never realized) is an estuary, an essential ecosystem where fresh water mingles with salt water and tides, providing a significant habitat for a bounty of marine creatures and birds. Along the beach we found many scallop shells, native to the bay, and even some sea glass.

Our inn overlooked a marina, which was a plus for Al, who always loves to check out harbors when we’re by the sea. The view was particularly beautiful at night, under a huge full moon. And a big local attraction was the Book Barn, which houses thousands of used books in many, many nooks and crannies. In fact, when I read about Niantic while researching options, that store was the clincher for me. We spent several hours there browsing and, of course, left with more books to read. (Next time, we’ll remember to clear some shelves and bring books to sell to the store, another benefit.)

On Saturday night, we walked a few blocks from the inn to see the annual Niantic Light Parade, a hometown holiday festival of festooned fire engines, local dance troupes in twinkling costumes, the high school marching band, and more. Pure Americana. See the photo of Kermit the Frog, below, along with some other favorite views.

Here’s to more adventures with my dear Al, and many more happy anniversaries to come!

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: resilience, travel, vacation

Reunion

Evelyn Herwitz · October 11, 2022 · 2 Comments

This past Saturday evening I found myself at an old-time, family-run Italian restaurant not far from where I grew up. Along with several dozen former high school classmates, we were celebrating that milestone event, our 50th reunion. But for the name tags with our senior class photos, most of us would never have recognized each other, now grayer, heavier or thin with wrinkles, stooped. Hellos were immediately followed by squinting at the name tags and an, “Oh, I remember you!” Or not.

None of my high school friends made it, unfortunately, but the evening was pleasant and the conversations up-beat. Everyone I sat with was wise enough to stay away from politics. It was a good reminder that, despite our national discourse feeling like a high school hellscape, most people are considerate adults. We all grew up a long time ago.

The real highlight of my short visit back home, however, was the ever-stunning beauty of the Hudson River Valley. Someone somewhere (I keep thinking it’s Edith Wharton, but can’t find the quote) said that the landscapes of our childhood remain deeply imprinted in our hearts and minds.

So it is for me, growing up near Peekskill, N.Y. I don’t know if I fully appreciated it when I was young, but I was thrilled by the view outside my room at the old motel where our grandparents used to stay when they’d come from Cincinnati to visit—a wide expanse of the Hudson, glittering in the late day sun. Trains that run alongside the river hooted long and low, and even though we lived far from the river itself, that sound was wonderfully evocative of my childhood, beloved music that drifted across hills and woods to my ears, especially at night, especially in summertime when the windows were open.

I sent a picture of the view to my daughters, and my eldest texted back that I should go to Bear Mountain, which had always been a favorite spot when we’d come down to New York for Thanksgiving weekend. On Sunday morning, I checked out of the motel and took her advice, as the state park was only a short drive across the river. The route along the Hudson is winding and narrow, along a rock cliff, and I am no fan of heights, but I just focused on the road ahead as I crossed the iconic Bear Mountain Bridge, with its fieldstone toll house, no longer in operation. It was either that or another fieldstone shelter at Bear Mountain that makes a cameo appearance at the beginning of Jack Kerouac’s On the Road.

Up the squiggly road to the overlook at the mountain’s top, I was followed by a couple of guys on motorcycles, but they were in no rush to overtake me on such a winding route with only large jagged rocks between us and the sharp dropoff. I passed a few intrepid cyclists on the way. At the top, the view did not disappoint, though enough other folks had decided to get there ahead of the weekend holiday crowd that there was no space to linger. I got a better view of the Hudson on my way back down, at a scenic overlook, alongside several tourists with real cameras equipped with telephoto lenses.

From Bear Mountain I drove through Peekskill, which, to my amazement, has barely changed since I was last there, at least 20 years ago. Some of the same mom and pop businesses still remain. The downtown, such as it is, remains dominated by red brick storefronts and the odd, curved, windowless, painted brick building that once housed Genung’s, the local department store where my mom bought me my first bra.

With a little help from my GPS to drive in the right direction out of town, I found my way to the familiar route to our old home. There were a few notable changes: the nunnery is now a condo complex; the community hospital where our mother was treated for the cancer that took her life in 1999 is now owned by New York Presbyterian Hospital.

I turned off the GPS and continued on, past houses that look much as they did when the school bus drove us by, past the decaying one room school house that’s now barely recognizable, past the gas station and general store where we’d walk sometimes to get Bazooka Bubblegum, past what was once a dude ranch for city folks that became a yeshivah while my dad was still living here, to the familiar left-hand turn onto our old road.

The house is barely visible now, hidden behind overgrown shrubbery, its yellow siding that my parents had installed decades ago now dark with mold. There were several cars in the drive and parked in the turnaround out front, so I quickly took a few photos, then drove down to the lake where I’d learned to swim and skate. It was clogged with algae and lily pads, no longer a place that anyone would dip a toe. Boaters were warned to proceed at their own risk. All that’s left of the large weeping willow that was planted when I was a kid is a ragged stump that looks like the remains of a lightening strike. There are weathered picnic tables and a playscape to one side, and the tennis court that used to be reserved for men only after they came home from their New York City train commutes, but the only signs of life, other than the aquatic, was a lot of Canada geese poop. Down the road from the path to the lake was a home with huge blue flags declaring the election victory of the former guy. It was time leave.

On my way out of town, I stopped at an roadside diner that used to be a favorite place for occasional dinners out. There are no longer any jukeboxes at the booths, and the restaurant has expanded well beyond its original blue diner car footprint, but the inside is authentic retro from back in the day, my hearty brunch was great, and it only cost twelve bucks.

Three-plus hours later, I walked in the door and found my husband decorating our pine-bough-covered sukkah, in preparation for the Jewish festival of Sukkot. Later that evening, after we’d finished eating out in the sukkah, I leaned back in my chair and studied the gourds that Al had hung from the lattice roof and smelled the pine boughs and was just grateful to be back home.

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

Ooh la la!

Evelyn Herwitz · August 30, 2022 · 2 Comments

At long last, after three years of Covid delays and a bout with Omicron in July, we finally traveled abroad on vacation. This time, we went to Canada, spending a meaningful weekend with family in Toronto and a lovely week in Québec City, which feels like going to Europe without flying across the ocean. I’ve been intrigued by the capital of Québec for years, and it was well worth the wait.

We stayed in the charming Old City and walked and walked up and down the hilly streets, using the funicular only a couple of times at the end of our visit because my feet were giving out. Over a week’s course, we learned a lot about the city’s military history and First Nations. Québec City was built on a high cliff as a fortress and played a major role in the Seven Years War between France and Britain for control of Canada. In a decisive battle in 1759 on the Plains of Abraham, the British won, a turning point that soon led to British control of the territory. This, after the French laid claim to lands that had belonged to First Nation peoples for thousands of years prior. Stories unique to place and time, but all too familiar.

The Old City’s architecture features stone buildings with dormers and metal roofs that are curved at the bottom so snow falls away from the foundation. Churches abound, though we learned that here, as elsewhere, the number of church goers in this predominantly Catholic province are declining. So some churches are being repurposed, including a tasteful renovation of a church into a public library.

We saw wonderful and moving art as well, including a powerful outdoor installation near the port by Ai Weiwei of hundreds of life jackets worn by Syrian refugees, which he collected from the Greek island of Lesbos. Talented street performers juggled and balanced on unicycles in the plaza next to the posh Chateau Frontenac, a landmark hotel. Beyond the Old City’s gates, we toured the Parliament building, which is modeled after the Louvre in Paris and home of Québec’s National Assembly, and the Musée national des beaux-arts du Québec, where we saw an exquisite special exhibit of carvings by Inuit artist Manasie Akpaliapik.

And we traveled up the St. Lawrence by bus to explore the Chute Montmorency, a thundering waterfall that is slightly higher than Niagara Falls, and from there by train to Baie-Saint-Paul, a pastoral town that is home to many artists. Other highlights included a guided tour of the Musée Huron-Wendat and a relaxing cruise on the St. Lawrence. A good thing we walked so much, even as I was exhausted by day’s end, because the food is excellent and the deserts magnifique.

Everywhere we went, we were surrounded by the lyrical sound of spoken French. While I was able to understand about 80 percent of what I read in museum texts, signs, and other materials, the spoken language is very fast and also a dialect, so we had to converse in English. Nonetheless, we were both grateful to our high school French teachers so long ago, that we were able to keep up as well as we did. And, yes, people really do say “ooh la la” instead of “oh wow!” Much sweeter to my ear.

So, here are some of my favorite images from the trip. Profitez-en bien!

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: resilience, travel, vacation

Gotcha

Evelyn Herwitz · July 19, 2022 · 2 Comments

So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay safe.

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: Gratisography

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Filed Under: Body, Mind, Taste, Touch Tagged With: COVID-19, managing chronic disease, resilience, Sjogren's syndrome, stress, travel, vacation

Quietude

Evelyn Herwitz · July 5, 2022 · Leave a Comment

I skipped the fireworks this July 4th weekend. I just wasn’t up for it. Last week was such a heavy lift in so many ways, with so much at stake in our democracy. Al and I had no special plans for the holiday, which was fine. I had a long to-do list and needed time to think.

When I finally got up from my desk yesterday for a late afternoon walk around the neighborhood, I was expecting to hear boisterous backyard parties, music, even the pop of firecrackers. But to my surprise, it was quite still. No one else was out walking, unusual for the time of day. Some neighbors had decorated their homes with American flags. One had strung red-white-and-blue bunting from the windows. There were a few homes with a line of cars parked out front, and I smelled some barbecue. But no laughter drifted on the light breeze.

On a picture-perfect Independence Day, the loudest sounds were the chatter of house sparrows and the pensive coos of mourning doves. A few bunnies hopped across lawns. A couple of neighbors, pausing from tasks, said hello. My hydrangea burst silently into full bloom. And that was it.

I am one who enjoys moments like these. As I walked, I was grateful for the peace, the quiet, the contemplative mood. In other neighborhoods across our country, that is not a given. Nor is it a given in other countries around the world.

I hope that you and yours are able to find quietude when and where you seek it. We all need time, right now, just to be.

I’ll be taking a couple of weeks off to do just that, back later in July. Peace.

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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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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