Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Greening

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At long last, it finally feels like spring here in Central Massachusetts. Over the weekend, the sun came out, the temperature climbed to 70°F, and all the trees that had been waiting for the signal unfurled their leaves.

We are once again surrounded by green. And so, Al and I went for a hike on Sunday. He took me to a beautiful forested park with trails around a cascading stream. I hope these photos give you the aahhh sensation I felt while hiking. 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.

A Big Apple Birthday

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Last Tuesday was my 69th birthday, so what better way to celebrate than to spend it in New York City, one of my favorite places in the world. I hadn’t been to New York since before the pandemic, which was rather stunning to realize as I planned our overnight jaunt. So, we made the most of it.

On Monday afternoon, we left our car in New Haven and took the train (seniors get a 50 percent discount—a definite advantage of aging) to Grand Central, then walked to our hotel, called (how could I resist?) The Evelyn, just north of Madison Square Park in so-called NoMad. Not only was the hotel’s name appealing, but also the decor—Art Deco and themed to nearby Tin Pan Alley, the birthplace of popular American music at the turn of the 20th century. The row of buildings on West 28th Street where songs like Give My Regards to Broadway by George M. Cohan and Take Me Out to the Ball Game by Albert Von Tilzer were composed and published have been preserved, although, true to New York’s evolving neighborhoods, they now house a group of wholesale hat and scarf importers.

On Monday night, we had dinner in the East Village at Caravan of Dreams, which serves creative and delicious vegan organic dishes, quite a treat. After a restful sleep, we spent much of Tuesday at the Museum of Modern Art. There is currently a fantastic, curated retrospective of the museum’s collection, including works by German expressionists and some Bauhaus pieces that I wanted to see. But there is always so much to savor at MoMA, and it was great to be back.

We had lunch at the museum’s Terrace Cafe, and when I ordered a slice of chocolate cake with raspberry sauce (one of my favorite flavor combinations) to split with Al, he informed our waiter that it was my birthday. Soon the waiter returned with the cake and a candle and a song, and when he finished, the whole place applauded. I felt very celebrated and grateful. And the delicious cake was on the house.

All in all, a wonderful way to mark #69. Here are some photos of favorites. Enjoy.

“Storm Clouds Above Manhattan” by Louis Lozowick (1935)

 

“Modjesko, Soprano Singer” by Kees van Dongen (1908)

 

Decorative dividers, including Frank Lloyd Wright stained glass and woven hanging by Annie Albers

 

“Wind Tunnel Construction, Fort Peck Dam, Montana” by Margaret Bourke-White (1936)

 

“Broadway Boogie Woogie” by Piet Mondrian (1942-43)

 

“Dr. Mayer-Hermann” by Otto Dix (1926)

 

Bauhaus tableware

 

“Around the Fish” by Paul Klee (1926)

 

View in the Sculpture Garden

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.

Harbingers of Spring

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At last, the weather is warming here in Central Massachusetts, and we’re turning green again. I’m always struck by the subtleties of early spring, how the tiniest buds and flowers emerge before I notice. And then, all of sudden, so much color. It always gives me such a lift.

You don’t have to go far to find these verdant harbingers. Here are a few glimpses from around our home. 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.

Anticipation

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If all goes according to plan, next week I will be traveling to Germany to research my second novel. (Where is the first novel, you might ask? It’s in search of a literary agent, a long process. Details at my author’s website.) The second novel is set in Germany during 1928-1938, and I’m heading for Berlin, Dessau, and Munich. As we all know, when it comes to travel (and life in general) the adage “Man plans, God laughs” is often apt.

So, fingers crossed.

This is the first time I have ever ventured abroad on my own. I never traveled as a teen or young adult, with the exception of a two-week, whirlwind trip with my sister in 1973, a gift from our grandmother, who wanted us to see her German homeland and get a taste of Europe. We traveled by Eurailpass, back when it was really cheap to go First Class, from London to Berlin (we took the train-ferry across the English Channel to Belgium, then flew into Berlin since access was limited because the country and city were still divided), and on from Berlin to Copenhagen, Amsterdam, Zurich, and Paris. We stayed in youth hostels, dragged our suitcases everywhere, saw a lot, but decided to come home a few days early because we were totally exhausted.

In recent years, Al and I have traveled to Israel and made several wonderful trips to Europe, plus a lovely visit to Canada this past summer, and I’ve gained a lot of experience with travel planning. With this trip, I’m putting all of that to good use. I’ve cleared my plan with my entire medical team, who have been universally supportive and encouraging. And Al and our daughter are, as ever, supportive, too.

After all the restrictions of the pandemic and the past couple of years trying to figure out what exactly has been going on with my heart and lungs, I am both grateful to be feeling up for the adventure and trying my best to stay healthy prior to and during my travels. More than just a trip I’ve been dreaming of for several years and planning for months, this is a personal-best challenge to myself. I need to know, as I approach my 69th birthday next month, that I can just do it.

So, if all goes according to plan, I will be taking a break from writing here for a few weeks. I hope to have some great stories and photos to share when I’m back at the end of the month. In the meantime, Dear Reader, 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: Stefan Widua

On Managing Pain

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About six years ago, I developed deep, intransigent ulcers on five fingers that eventually caused irreversible damage to both hands. It was quite an odyssey, which involved two hand surgeries and 60 dives in a hyperbaric oxygen (HBO) chamber to heal. My 2017 account of the saga begins here.

I was in severe pain as my hands literally fell apart, which I was able to manage partly with medication. But I also used a meditation routine that I found on Headspace to help. The process involves focusing on sensations just beyond the locus of pain and gradually learning to isolate the specific spot that is causing such discomfort. It remains an important lesson in how pain generalizes, can be deceptive, and is exacerbated by fear and stress.

Surgery and the HBO therapy resolved both the acute and chronic pain issues, but perhaps the strangest outcome of all this was some phantom pain in my right middle finger. As part of the surgery, the top joint was amputated. But I still had sensations that hovered in the air where that fingertip used to be. It wasn’t pain, so much as a weird phantom itching. I would rub the blunted end of my middle finger, but it wouldn’t stop the itching entirely. It actually has taken all this time for that phantom discomfort to now be a very rare occurrence, as my brain has rewired to understand how my finger has permanently changed shape.

I share this because I recently listened to a fascinating podcast about pain management that explains my experience. In an interview with Ezra Klein, Dr. Rachel Zoffness, a pain psychologist at the University of California at San Francisco’s school of medicine, discusses the complex interactions between mind, body, and social cues that create the sensation of pain. She is very clear that pain is our body’s warning system of danger and physical damage, but that pain is also a function of our brain’s map of the body, and that the brain does not always truly know when danger is no longer present. This can be a significant factor, particularly, in managing chronic pain.

Pain management is a skill set for living with scleroderma, certainly, but also for life. So, here is the interview and a transcript. I hope you find it as illuminating as I did. 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:  Santiago Ramón y Cajal nerve cells ca. 1900