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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Hearing

What I Want

Evelyn Herwitz · October 30, 2018 · 4 Comments

I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us all.

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 Credit: Zoran Kokanovic

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience, stress

Just Breathe

Evelyn Herwitz · September 25, 2018 · 2 Comments

This past Friday morning, I had double-header appointments at Boston Medical, an echocardiogram followed by a routine appointment with my wonderful rheumatologist, who has been my specialist for at least two decades, now.

My last echocardiogram was done a couple of years ago, one of those tests I have to repeat occasionally to monitor signs of pulmonary arterial hypertension (PAH), a late-stage complication of scleroderma. The only symptom, so far, is extreme shortness of breath if I commence intense aerobic exercising without a serious warm-up. We’ve been watching this for years, now, and I’m on prophylactic medication that seems to be protecting me from worse complications.

Most of the time, the test doesn’t bother me. It’s non-invasive, and, depending on the tech, just mildly uncomfortable. Like I said, depending on the tech. This time, let us say, it was more challenging.

First, the easy part. You lie down on your left side, with your head on a pillow. The lights are dimmed so the tech can see the computer screen more clearly. A transducer, which looks like a short, hand-held rod with a gel-covered rolling ball on top, is pressed against your ribcage, neck and diaphragm, to send high frequency sound waves through your chest wall. It’s like an ultrasound for your heart. The sound waves bounce back to the computer, which translates them into moving pictures of your heart muscle. Occasionally, the tech will turn on the audio, and you can hear your heart beating away, kind of a squishy, pumping sound that seems to reverberate from a deep well.

Now for the hard part. You have to hold your breath during certain parts of the test, so that your diaphragm doesn’t cause your heart to move around and your lungs aren’t so full that they interfere with the heart imagery. I’ve never had an issue with this in the past, but my tech on Friday had a very specific way that he wanted me to empty my lungs, first, and then take in only a small sip of air. Then hold. And hold. And hold. While he pressed really hard with the transducer on my ribcage. I have no padding there. It hurt. And I couldn’t wave my hand or ask, “Can I breathe now?”

I really started to wonder, at a few points, if I would actually be able to hold my breath long enough. Fortunately, each time, just as I thought I wouldn’t make it, he said I could breathe again. It was also reassuring to hear my heart beating when I felt like my lungs would burst. “You’re doing great,” he said. I guess so. Test results will be available this week.

By the end of the half-hour, I was very glad to get dressed and head over to the Rheumatology Department. The sun was bright, the air crisp. As I caught up with my rheumatologist, who, like me, is in his sixties, we chatted briefly about retirement. To my relief, he has no plans of retiring anytime soon. This time, I needed no permission to breathe.

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 Credit: Eric Witsoe

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Filed Under: Body, Hearing, Mind, Smell, Touch Tagged With: managing chronic disease, pulmonary hypertension, resilience

Back Home

Evelyn Herwitz · September 18, 2018 · 2 Comments

Home from our summer travels for about a week-and-a-half, but already it seems like a long time ago that we were away. That’s the strange thing about vacations. You’re completely immersed in your environs while you’re there, but once you’re back, it’s almost as if you never left.

Which is why I keep a travel journal, and we take plenty of pictures (especially my dear husband). If a tourist walks in a city and leaves without a record, was she really there?

Yes, I was, with Al—in Prague, Bratislava, Vienna and Berlin. Sixteen days, four countries, a crash course in European history, spectacular scenery, wonderful art. This trip was also personal: the bookends of our itinerary were designed to honor the memory of my great grandparents, who were murdered in Eastern Europe during the Holocaust.

My mother’s father, a professor of engineering at the Technische Universität Berlin, saw the writing on the wall in 1935 when he lost his position because he was Jewish. In 1936, after five months of searching for work in the U.S., he was able to find a good job and make a new home for my grandmother and mother. But, despite a heroic effort, he was unable to convince his elderly parents, who loved their homeland, that they should emigrate, as well, until it was far too late for them to escape the Nazis. They were transported to what is now called Terezín, a concentration camp about an hour’s drive from Prague, in August of 1942, and died there in early winter of 1943.

No one in my family has ever gone to Terezín. So, with a private tour guide, we visited the camp and learned details of my great grandparents’ final months. We lit candles in their memory. Later, at the end of our journey, we joined friends in Berlin for the placement of two Stolpersteine, or “stumbling stones,” which are memorial cobblestones placed in the sidewalk next to the home where victims of the Shoah last lived of their own free will. These were powerful experiences for me, which I am only beginning to process and understand. It is one thing to know the history of World War II in the abstract, and quite another to confront such horrors in the lives of your own family.

We enjoyed uplifting experiences, as well: fairytale scenery in Prague, a day trip to Slovakia’s High Tatras amidst the Carpathian Mountains; a visit to a medieval silver mining town, also in Slovakia, one of several UNESCO World Heritage sites that we saw during our travels; extraordinary artwork by two of my favorite painters, Egon Schiele and Paul Klee, in Vienna and Berlin. And, oh, yes, some very delicious food. My hands held up, my feet wore out, but I’m so grateful that we were able to honor my great grandparents’ memory and have another overseas adventure, whatever the challenges—physical and emotional.

Here are a few highlights:

View of Prague Castle from the Charles Bridge
John Lennon Wall, Prague
Mucha stained glass window in St. Vitas’s Cathedral, Prague
Devin Castle ruins, Bratislava
High Tatras, Slovakia
Old Castle fortress, Banská Štiavnica, Slovakia
Belvedere Palace and Museum, Vienna
1936 Olympic champion Jesse Owens’ name carved in the wall of the Berlin Olympiastadion (top left column)
“Landschaft in Blau” (Landscape in Blue) by Paul Klee, 1917, Berggruen Museum, Berlin
The Stolpersteine honoring my great grandparents, Berlin

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: resilience, travel, vacation

Savory Summer

Evelyn Herwitz · August 21, 2018 · Leave a Comment

Look! the round-cheeked moon floats high,
In the glowing August sky,
Quenching all her neighbor stars,
Save the steady flame of Mars.
—Emma Lazarus, August Moon

Mid-August, and I can already sense fall’s vibrations. Not yet. No, not yet.

On so many recent sweltering nights, I’ve lain in bed with windows open and treasured the symphony of crickets and katydids. How lovely to leave the house without donning even a sweater. The sun still sets after supper, and the trees remain lush, even as a few wayward, scarlet leaves drift to the ground beneath the sugar maples on our street.

Before autumn’s busy-ness descends, it’s time for time off—from work and deadlines and responsibilities. It’s time for a break from blogging, too. I wish you, Dear Reader, a savory late summer. I’ll be back with weekly posts in mid-September.

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 Credit: Aron

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

48 Hours

Evelyn Herwitz · July 3, 2018 · Leave a Comment

It’s been nearly 30 years since I visited our nation’s capital. This past weekend, Al and I packed in a slew of sightseeing in Washington, D.C., around a family celebration in Virginia. In just over 48 hours, we visited the National Gallery, Lincoln Memorial at night, Vietnam Veterans Memorial (also at night), Supreme Court, Capitol grounds, Newseum, National Gallery Sculpture Garden, National Archives, Hirshhorn Museum and National Gallery East. On Saturday morning, in sweltering heat, we participated in the Families Belong Together protest rally in Lafayette Park, next to the White House.

I walked my feet off. It was worth it. The highlight of DC, for me, was seeing the original Declaration of Independence, U.S. Constitution and Bill of Rights at the National Archives. The parchment is huge, the writing faded, the signatures inscribed by human hands. The ideals endure. I was reminded by an exhibit about women’s suffrage at the National Archives and the chiseled words of Lincoln’s second inaugural address at the Lincoln Memorial of how much struggle and acrimony is embedded in our nation’s history. I felt the power and protection of the First Amendment in Lafayette Park.

Here are some of my favorite images from our trip:

The conclusion of Lincoln’s second inaugural address at the Lincoln Memorial
Lincoln Memorial at night
Seen in a garden on our way to Capitol Hill
Protesters outside the Supreme Court
Heading toward the U.S. Capitol Building
Section of the Berlin Wall at the Newseum
National Gallery Sculpture Garden
Families Belong Together protest in Lafayette Park
Calder sculptures at the National Gallery East
Saul Steinberg, Untitled (A Conversation), National Gallery East
Le Gourmet, Picasso, National Gallery East

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, Touch Tagged With: feet, managing chronic disease, mindfulness, resilience, travel, vacation

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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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