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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Taste

And She Persisted

Evelyn Herwitz · July 11, 2023 · Leave a Comment

It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Up in the Air

Evelyn Herwitz · May 30, 2023 · 2 Comments

I’m traveling again on my own, sitting at Logan airport, waiting to board my flight to Philadelphia. So far, so good, but as much as I try to anticipate how to make the journey easier on my hands, there are always surprises.

One thing I did right: I knew the flight was full, and my seat is in the back. Chances of getting overhead storage for my carry-on was slim. So I volunteered to check my bag when the inevitable announcement came. Saved $30 and spared my hands and back. There’s an Apple Air Tag in my bag, in case it gets lost in transit.

One thing I should have realized in advance: Getting though the entrance to security requires showing your ID, which I had ready, but my driver’s license is in a wallet with a window. Nope, needs to be handed to the security staff, because they run it through a card reader. I fumbled and fumbled to remove it. Fortunately, no impatient person was in the very short line behind me. But I needed the TSA guy to take it out for me, just couldn’t do it myself. Ugh.

Something I wish I could manage better: Lifting my luggage into the TSA bins, taking out my computer, taking off shoes, et al is always the hardest part of air travel for me. (“Do you happen to be 75 or older?” asked the TSA guy politely, regarding the shoes. Apparently when you reach that magic age, you are no longer suspect for having dangerous items concealed in your footware. “No,” I asserted. He apologized for asking. Ugh.) At least security wasn’t crowded, so I didn’t feel as rushed as usual.

Another thing I did right, sort of: With a lot of time to kill, I got a bagel and cream cheese and some tea at a Starbucks in the terminal. Of course, this meant that I had to spread the cream cheese myself. It came in a foil packet with a nick at one end and directions to “tear here.” Unless you have strong fingertips, these things never work. I had packed a pair of manicure scissors for just such a challenge. But I put them in my backpack, instead of my purse. So, lots of digging around before I could pull them out and use them. Next time, I need to remember that I can put them in my purse—no issue with tiny scissors going through the TSA scan (especially since it raised no issue when my backpack passed inspection—duh).

A useful trick that I learned from my trip to Germany: To protect my thumbs, which are always bandaged because of ulcers that never heal, I wrap the bandages with a second layer using Coban. This is an elastic fabric that comes in rolls and sticks to itself. One of my medical team recommended it as a way to cushion my thumbs and protect them more. It works pretty well, and serves also as a second layer to keep my bandages from getting dirty from travel.

A necessary precaution: I’m wearing a mask in the airport and on the flight. Enough coughs and sneezes in the vicinity, and I don’t want to get sick or make others sick when I arrive.

I wish flying were simpler and enjoyable. It isn’t.

Even still, I am always amazed that a huge steel tube with wings, filled with tons of people and luggage, can rise into the air and carry us to distant places. The view of clouds and patchwork landscape and cities from above never fails to fascinate. For all the drawbacks of air travel in the 21st century, it’s still a wonder. . . .

And I made it to Philly without a hitch.

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, Taste, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience, stress, travel

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)

 

“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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, mindfulness, resilience, travel, vacation

Auf Wiedersehen

Evelyn Herwitz · March 28, 2023 · 8 Comments

And so, I made the trip to Germany. On my own, abroad, for the first time in my life. It was an extraordinary, transformative experience, not only for all that I saw and learned, and all the people I met along the way, but also for rediscovering that fearless explorer within, who has been hiding for decades since I first heard the word scleroderma.

As I’ve written here in recent months, the past couple of years with this disease have been more complicated. Finding myself suddenly short of breath when physically or emotionally stressed led to a battery of diagnostic exams, and ultimately a diagnosis of Type 2 Pulmonary Hypertension. Thanks to my wonderful cardiologist, I found a calcium channel blocker that works for me and mitigates the worst of the symptoms. I’ve also learned some new breathing techniques that help to avoid the problem when I start feeling stressed.

With all that, as I began to feel better again and moved past the worst of the pandemic, I felt a great need to get out—get out of my head, get out of my routine, and get out of the country to travel once more. I needed to prove to myself that I could do this on my own. Working on a novel about Germany during the Weimar Era and rise of the Third Reich, I had to see what I’d only been able to read about, and I needed to focus. I have family roots in Germany, as well. My mother and her parents immigrated to the U.S. in 1936 to escape the Nazis. So the visit was multi-layered.

As is always the case with travel, not everything went as planned. On both ends of my trip, I had to make last minute changes in my transatlantic flight—pushing back my departure from Boston by two days to avoid a Nor’easter that was threatening to wreak havoc with snow and high winds, and leaving a day early at the end when my flight home from Munich was cancelled due to a planned airport strike. (Yes, they plan strikes there, so you can work around it.) There were also two instances when the S-Bahn (commuter rail) in Berlin was running late or disfunctional, and I had to figure out how to grab a taxi to get to a tour on time. But it all worked out. And, to my amazement, I just rolled with it and problem-solved along the way.

For the most part, however, the trip was a wonderful journey, beginning with my seat mate on the way over, who was from Munich and gave me excellent suggestions for my two-night layover there. From Munich I flew to Berlin, where I stayed five nights in the very funky Hotel-Pension Funk, the former home of a silent film star that is decorated in period Art Nouveau style. I immersed in history, art, design, and architecture, including a visit to the Museum der Dinge (Museum of Things), where I learned about design standards as the country shifted from handcrafts to industrial manufacturing, and an outstanding private tour of sites and stories about Weimer Berlin. I also had dinner one evening with good friends and spent a day touring with them, as well.

From Berlin I traveled by train to Dessau, just under two hours southwest of Berlin, to stay at the Bauhaus, now a UNESCO World Heritage site. The Bauhaus School was in existence from 1919-1933, first in Weimar, then in Dessau, and finally for a brief period in Berlin before it closed under Nazi pressure. Founded by architect Walter Gropius, the Bauhaus melded art and technology to rethink how people could live and work humanely and cooperatively in post WWI society. I stayed two nights in what had been student housing, and toured the building as well as the outstanding Bauhaus Museum in the city.

From Dessau, I took a high speed train back to Munich, where I stayed at a small, very comfortable modern hotel in the Altstadt (Old City). My time in Munich at the beginning and end of the trip focused on why and how the Nazis formed there and gained power under Hitler. In both Berlin and Munich, I also visited concentration camp memorials—Sachsenhausen outside of Berlin and Dachau outside of Munich. Both tours were powerful experiences, sobering, profoundly thought-provoking. There is much dark history in Germany, but also a deep public reckoning with the past.

In Berlin, on Shabbat, I went to a synagogue that was a short walk from my hotel. The Pestalozzi synagogue was burned on November 9, 1938, on what has been called Kristallnacht, the Night of the Broken Glass, but is now referred to in Germany as the Reichspogrom—a more accurate description of the two nights when Nazis directed the destruction of synagogues and Jewish-owned businesses in pogroms throughout the country. Pestalozzi was not totally destroyed (burning it risked a neighborhood that the Nazis wanted to save) and was restored and rededicated after the war in 1947. It is a beautiful building, and the service felt much like ours at home.

Later, I realized that I was the first member of my family to set foot in a Jewish house of worship in Berlin in a century. It was one of the most important moments of the trip. I am still processing all that I experienced, and will be for some time. I am glad to be home, but I was also sad to leave. Most of all, I’m grateful to my dear Al, our wonderful daughters, many friends, and my entire medical team, who fully supported me on this adventure, and for the fact that I was able to thrive on my own.

Here are just a few images from my travels.

Nymphenburg Palace in Munich, where I walked the grounds to stay awake after my transatlantic flight.

 

Hotel Laimer Hof, my accommodations in Munich at the beginning of the trip

 

The breakfast room at the Hotel-Pension Funk in Berlin

 

Dishes and utensils at the Museum der Dinge, which reminded me of my grandmother’s china and flatware

 

TV sets at the Museum der Dinge

 

Starving Sachsenhausen prisoners drew this on the walls of the camp kitchen’s potato peeling cellar.

 

Berliner Ensemble, formerly the Theater am Schiffbauerdamm, where Bertolt Brecht’s and Kurt Weill’s Threepenny Opera debuted.

 

Inside Friedrichstadtpassagen shopping center, former site of two famous clubs, the Weisse Maus and Cabaret of the Nameless

 

Theater des Westens. The basement housed the Tingel-Tangel Cabaret, which performed biting satire of the Nazis even for a few months after Hitler became Chancellor in 1933.

 

At the Berlin Hauptbahnhof, waiting for my train to Dessau

 

The Bauhaus in Dessau, view of the Studio Building where I stayed

 

Costumes for a Bauhaus dance performance, at the Bauhaus Museum in Dessau

 

Weaving at the Bauhaus Museum by Gunta Stöltz (1928), rewoven/restored by Katharina Jebson (2022)

 

Student notes from a Bauhaus class with Paul Klee, Bauhaus Museum

 

Bike rack on the high speed ICE train to Munich

 

The Neues Rathaus (New Town Hall) in Munich

 

Munich memorial to victims of the Nazis

 

Public mural in Munich

 

Memorial to prisoners at Dachau Concentration Camp Memorial Site

 

Commemorating those who died at Dachau

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: anxiety, managing chronic disease, pulmonary hypertension, resilience, vacation

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.

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

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, finger ulcers, managing chronic disease, mindfulness, resilience, stress, travel

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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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