Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

How I Spent My Spring Vacation

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I’m back home since last Tuesday night, back on East Coast time, and nearly caught up on sleep, after an intensive 12-day journey with Al to Germany. As is my way, I packed a lot into our itinerary, based in part on more research for Novel 2, which is set in Weimar Germany, and in part on things I’ve always wondered about and wanted to visit, and in part on catching up with good friends there.

We flew direct to Frankfurt-am-Main, Germany’s financial center, and used it as a hub for day trips by train to various points of interest, including Kassel, home of the Brothers Grimm for most of their adult lives; the Rhine River Valley, speckled by castles, hillside vineyards, and lovely towns; Worms (pronounced Vorms, rhymes with forms), which was a famed center of Jewish intellectual life in the Middle Ages and is home to the oldest Jewish cemetery in Europe; and Heidelberg, a renowned university city and site of castle ruins.

From Frankfurt, we took the 4-hour high speed train to Berlin, and had a guided tour of the Schöneberg district, where my mother grew up around the corner from Albert Einstein, and the location of JFK’s famous “Ich bin ein Berliner” speech in 1963; visited a variety of spectacular museums, where we saw art by Paul Klee and Gerhardt Richter; as well as learned about life in East Berlin and under the surveillance of the Stasi secret police. We also visited a wonderful puppet museum with an extraordinary collection and curators who filled me in on some history I’d been seeking.

On top of that, we had a lovely and meaningful visit with our friends, who treated us to delicious meals and took us to another beautiful and historic Jewish cemetery, the largest in Europe. Last Monday we took the train back to Frankfurt, stayed overnight, and then flew home. I was exhausted, but it was well worth it. And that’s the very short version of our travels.

What do all these things have in common? I’m thinking a lot about German folklore and how it informed culture and society in the 1930s, as well as the heritage of German Jewish communities. I’m also thinking a lot about art and censorship, which are central to my novel. And I’ve always wondered about castles on the Rhine. Fun fact: they were built by princes who wanted to collect tolls from ships traveling up and down the river—the very definition of robber barons.

I’m still processing all that we explored. I will be thinking about this trip for a long time. Grateful we could go and return home safely. Here are just a few pics of what we saw. 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.

Good Grief

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I really could use a break, right about now. It’s gorgeous outside, a medley of pink and white blossoms, chartreuse young leaves, sunny forsythias, bright red tulips, dainty violets. But I can’t go outside for my walks to revel in spring’s beauty because I’m having one monster allergic reaction to all the associated pollen. I think maple trees are the main culprit, because this happens to me every year, now, when they start to flower. I have been congested and coughing for more than a week.

This is complicated by the fact that I can’t take any OTC decongestants because they will raise my blood pressure. Antihistamines help, as do expectorants and cough surpressants, but it’s really not enough. Can’t use saline rinses because they tend to make my nose bleed. Very frustrating. Had to skip a theater performance this weekend because I was coughing so much, I didn’t want to be THAT annoying audience member.

Then there is the latest dental issue. I’ve written over the years of how I have a delightful complication of scleroderma that causes the roots of my teeth to resorb. Every few years another one gives out, and I have to start the long and expensive process of getting another implant. A few weeks ago, one more tooth that my dentist has been monitoring for years decided that its time is up. The extraction is scheduled for next Wednesday, giving me a week to recover before some planned travel.

At least my left index finger is slowly healing. Two visits to our hospital’s Wound Clinic were very helpful, and between steroid ointment to reduce the inflammation and some petroleum-jelly-infused wound dressing, it is inching along. But it requires a lot more patience than I’ve been feeling, of late. Like I said, I really could use a break from all this mishegas.

And so, Dear Reader, thanks for letting me rant. It’s just been one of those 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.

What Comes Next, Comes Next

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The election is over. It is not the result I had hoped for. For now, I am just trying to keep my head on straight and focus on what’s in front of me.

And so, I took a walk Sunday afternoon, in the sharp, unflinching November light that reveals each detail of bark and lichen and crumbled leaf. A friend had mentioned a lake not far away that you can circumnavigate via a pontoon bridge that connects to a woodland trail. The weather was pleasant, not too cool, not too hot. And I needed to clear my head.

It took me about 45 minutes to walk the full route. Water gurgled as it lapped the pontoon bridge, a popular attraction for families pushing strollers. A gaggle of teen boys asked me to take their photo against a backdrop of sun-illumined lake. Children ran ahead of their parents, delighting in the novelty of walking across water. Others whined until they were picked up and carried by moms, “just for a little while.”  The woodland walk was less traveled, peaceful, more conducive to sifting and sorting my emotions.

What struck me most, however, along the whole route, was the number of different languages I overheard. That, and the friendly greetings of strangers. Whatever the outcome of this election, we are a big-hearted country made up of people from all over the world who call America home. Many of us, myself included, are children of immigrants and, yes, refugees. Whatever happens, we must remember that. Our diversity, our generosity, our kindness—these are our true strengths.

Here are some photos. Hope you 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.

Take a Deep Breath

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As we head into next week’s election, I’m reminding myself to breathe. Just breathe.

And the way to breathe matters. A couple of years ago, I discovered an important lesson: If you breathe from your chest when you are stressed, it triggers your fight-or-flight response, an adrenaline rush, and fuels anxiety. If you breathe from your diaphragm, it cancels out the fight-or-flight anxiety reaction and calms you down. It really works. Here’s an explanation from the Cleveland Clinic, which is an excellent source of vetted medical information.

Simple? Yes. Why it took me until I was in my late ’60s to learn this? No clue. This practice is central to meditation, which I also find helpful. But I didn’t know how the chest breathing really exacerbates stress until I was untangling the very uncomfortable sensations of what turned out to be Type II Pulmonary Hypertension, a late stage complication of scleroderma.

So, I pass this lesson along to you, Dear Reader. I hope you find it helpful as you confront your own worst fears and stresses.

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: Harli Marten

Choose Humanity

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I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.