body-mind balance

A Big Apple Birthday

Evelyn Herwitz · April 25, 2023 · 4 Comments

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)

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

Evelyn Herwitz · April 11, 2023 · 2 Comments

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!

Anticipation

Evelyn Herwitz · March 7, 2023 · 4 Comments

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.

Image: Stefan Widua

On Managing Pain

Evelyn Herwitz · February 28, 2023 · 2 Comments

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.

Image: Santiago Ramón y Cajal nerve cells ca. 1900

Candy Heart Wish

Evelyn Herwitz · February 14, 2023 · Leave a Comment

It’s Valentine’s Day, and we could all use a bit more love in this world. While I can’t send you a box of chocolates or a rose bouquet, Dear Reader, if I had my own little candy conversation hearts to share, here is the one message I’d print on them:

BE WELL

Easier said than done, certainly. But it’s a phrase that I’ve been thinking about a lot, especially since the pandemic. I use it to sign most of my email correspondence these days, business and personal.

Being well is more than just a physical state. We don’t necessarily have control over what our bodies do, especially with a disease as complicated as scleroderma and all its associated ailments. Assuming access to good medical care, however (and that’s a big assumption, given health care consolidation and the health insurance mess in the U.S.), it is possible to get treatments and medical support to ease the disease process. It requires recognizing and understanding your personal situation, learning what help is available and whom to trust, being a strong self-advocate, and following through on treatments and protocols.

There is a lot to learn about scleroderma, and a lot to process. My resources page links to leaders in scleroderma research and education, to help you. But the self-advocacy piece is, for me, the most important aspect of dealing with this disease for the past 40 years. I’ve learned to push my doctors for information and explanations, and to share my fears, as well. I’ve also learned to challenge treatment recommendations that don’t make sense, and how to find research that I’ve shared with my medical team to move in a more logical direction. And I make sure that I get all my questions answered in every appointment, regardless of how long it takes. I’m grateful that my medical team respects me for it, as much as I respect them.

In this sense, to BE WELL means that you are not your diagnosis. You are a complex individual with a complicated disease that requires you to stand up for yourself and what you need to remain as healthy, active, and involved in life as you are able. Wellness is as much a state of mind as a physical state. If there is one message that I hope this blog conveys to anyone with scleroderma, newly diagnosed or a veteran like me, it’s about living, not the diagnostic label.

So, happy Valentine’s Day to all. Be well.

Image: Laura Briedis

body-mind balance

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