resilience

Design Flaw

Evelyn Herwitz · April 18, 2023 · 2 Comments

Last Friday it was really hot, in the 90s, the kind of sudden temperature spike that causes spring to fast-forward. The kind of day that makes dough rise quickly, as was the case in my kitchen, because Passover was over and I needed to bake some challah for Friday night. By late afternoon, the dough had plumped high in its bowl. Even with the back door and porch slider open, the kitchen was uncomfortably warm.

So, I opened our two solar-powered kitchen skylights to let the heat out through the roof. They operate by remote control, and if it rains, close automatically. Quite the technological innovation, compared to our old leaky skylights with their clunky crank that required a wobbly pole to open and close.

Cleaning up after dinner, I picked up the remotes (each window has its own) and clicked the button to close each skylight. The left one immediately began to shut. But not the right. I switched out the AAA batteries and tried again. No luck. I tried the remote for the left skylight. Nope. Temperatures were sinking overnight into the 50s, and the skylight was wide open. I said to Al, “We have a problem.”

Now, Al, by his own admission, is not Mr. Handyman, and although I can see what needs to be done, I cannot often do it if the task requires some manual dexterity. Also, when I get stressed, I have trouble with word-finding. This is a problem that developed after I hit menopause, and it is extremely frustrating, which only makes the problem more pronounced. I know what I want to say, but I have to talk around the subject to get to the words I want. “Thingy” is one of my fall-back nouns. Not great for giving directions to my dear husband.

I had no idea where I had put the instructions for the skylights, so I began searching online for our skylight brand and problems with the remote. I soon learned that the issue involved resetting the wireless signal between the skylight and the remote. That made sense. Just one problem. You had to remove the insect screen from the skylight in order to do the reset, because the sensor was in the skylight frame. “It’s easy,” reassured the YouTube video. “All you need is a paperclip.”

Really? Now, I don’t about you, but as far as I know, skylights are located in ceilings. And in our kitchen, the ceiling is high, maybe 12 feet. I imagine that other people install their skylights in even higher ceilings. So you need a tall ladder to reach it. Which we do not own. On the rare occasions when we have a chore that requires one, we borrow from a helpful neighbor up the street. However, at 10:30 at night on a Friday, I was not about to call him.

Al’s first thought was to go up on the kitchen roof and try to make the adjustment from outside, an idea I emphatically vetoed. Even though the one ladder we own would make that possible (the eaves are lower than the peak of the roof), it was dark and too risky. Plus, as we later discovered, it would not have worked.

But he did convince me to let him try to bring that old rickety ladder inside and see if he could reach the skylight screen. He managed to prop it up safely enough, with me holding it steady and spotting him, to climb up and, by standing partly on the ladder and partly on the kitchen table, remove the screen from the skylight.

With Step 1 accomplished, we moved on to Step 2. This involved finding the tiny hole in the skylight frame that accesses the reset device. My ability to explain this to Al while I was getting more and more agitated because I could not find a working flashlight and we had to resort to using Al’s iPhone for him to locate this little pinhole in the skylight frame while I was replaying the YouTube video on mine was, shall we say, impaired.

However, we did locate the hole. Here’s where the paperclip comes in. You have to unbend a paperclip, insert it in the hole for 10 seconds, and then the skylight will move. Yes, a paperclip. Why not a button? Why not a switch? I have no idea.

Al inserted the unbent paperclip. Nothing. Now I was really getting frantic. How were we going to close it before the temperature dropped? Al suggested trying a larger paperclip, since he didn’t think the first one went in all the way. So I dumped all my paperclips on the table and found a bigger one, which I unbent and gave him. And, voila! The skylight began to hum and close. Thank goodness.

There’s a third step involved, which we postponed: sticking yet another paperclip into a hole on the remote, after you do the 10 second routine on the skylight frame, to re-pair the remote with the window. That will wait for a sunny day when we can borrow our neighbor’s ladder and not worry about a temperature drop.

After we put everything back in place and tidied up the kitchen, I was relieved. This was not how I had intended to spend Friday night, but we had managed to solve the problem, together, without breaking anything or getting injured or having an argument.

I was also incredulous. What genius thought it made sense to design a skylight that cannot be closed manually if it fails electronically, without climbing on a tall ladder to do so? And why a paperclip? This presumes not only that you have a tall ladder, but also that you have a stash of paperclips, which, in a world evolving away from using paper for documents that need to be clipped together, is becoming an anachronism.

But I digress. The one bonus of this adventure, if you’ve read this far, is it gave me a ridiculous story to tell. And we all need a good dose of ridiculous these days.

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.

To Mask or Not to Mask

Evelyn Herwitz · April 4, 2023 · 2 Comments

Ten days out from my trip to Germany, and I’m feeling fine, thank you. This, despite the fact that I stopped wearing my mask about halfway through the trip, except when on a crowded, stuffy bus or subway. I did not even wear my mask on the eight-hour flight home. I was sitting way in the back, no one around me or even up ahead was sneezing or coughing, and—most relevant—the air in commercial airplanes gets exchanged every two to three minutes, so risks of getting a respiratory virus are actually lower than in a restaurant. (This New York Times article from 2021 gives a helpful visual explanation.)

This is not to say that I was careless. On my flight to Germany, I wore my mask most of the time, to be sure I didn’t kibosh the trip. I also wore it in the airport when in a crowd and in other busy public transit terminals. The key determinant for me was always how many others were around without masks, if they were sneezing or coughing, and if fresh air was in the mix. On commuter rail, for example, when the doors opened every few minutes to let someone on or off, I felt safe without the mask.

I also did a lot of walking during my travels, between four to six miles a day. So, plenty of fresh air and exercise, plus a healthy diet and sound sleep, once I adjusted to the new time zone, all helped me to stay well. (I must also note that my feet were significantly helped by a new discovery, Orthofeet shoes, which are very well designed, comfortable, and not clunky, despite the brand name. Definitely made it possible to go farther than I expected.)

Since I’ve been home, I’ve tried to keep up with daily walks and physical activity. It’s taken much of the past week for my body to fully adjust back to DST here, but I have definitely been catching up on my sleep, at last.

As to masks at home, I’m following the same principles as I did on my trip. I’m keeping up with all of my vaccinations, always carrying hand sanitizer with me and using it whenever I use a touch pad or grab a door handle. (Actually, this has been my practice for years, given my propensity for ulcer infections on my fingers). If I’m in a crowded, enclosed space or around people who are coughing or sneezing, I always have a mask on hand, and if I’m not feeling well, I stay home. I still have a stash of Covid tests, and I’ll certainly test if asked before attending a get-together. But for the most part, thanks to vaccines and good public health practice, I feel safe going maskless most of the time.

That said, I also fully respect anyone’s decision to wear a mask, for their own safety, and I will wear one if someone asks me to, in order to help them feel safe.

Here’s hoping that Covid truly has morphed to an endemic state, and masking becomes merely a matter of personal choice, even for those of us whose immune systems need more tending.

Image: cottonbro studio

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

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

Memorial to prisoners at Dachau Concentration Camp Memorial Site

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

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