Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

vacation

Airborne Again

· · 2 Comments

After 27 months of mostly staying put, I finally got on an airplane once again. And, just as I did in March 2020, right before Covid shut down the world, I flew to Philadelphia to see our younger daughter. We had been planning this visit for months, hoping that neither of us would contract the virus last minute and have to scuttle the trip. Thank goodness, we both tested negative on Thursday night, the evening before my Friday morning flight.

And so, I found myself back in the stressful world of air travel, with its crowds and TSA checks and worries about whether my flight would actually be on time or late or, at worst, cancelled due to lack of available aircraft or staff. Thank goodness, the weather held, the flight was on time, and I survived feeling squished in a cramped, worn-out seat. And yes, I wore a mask from the moment the shared van picked me up at home until I stepped out into the warm June morning and found my daughter, waiting for me in her car.

And we had a great visit. Photos below include some of the highlights: a walk through the Magic Garden of mosaics in South Philly, my first in-person view of the Liberty Bell, an abortion rights rally outside the National Constitution Center—one day after the Roe decision came down from SCOTUS—with Pennsylvania Attorney General Josh Shapiro (Democratic candidate in the crucial gubernatorial race this fall) and 1,500 citizens, a stroll down historic Elfreth’s Alley, and a brief but wonderful tour of Independence Hall and “the room where it happened”—debates over the Declaration of Independence, the Articles of Confederation, and what was to become the U.S. Constitution. Oh, and a lot of great meals.

Flying back on Sunday morning was a bit less smooth: my flight was delayed about 25 minutes because the co-pilot had to arrive from a separate flight, due to last minute staffing issues. Given all the SNAFUs that could have evolved from that one logistical issue, including a delayed arrival of the co-pilot leading to time-out issues for the rest of the crew (yes, this once happened to me), it was a relatively minor inconvenience. Overall, the trip was a home run.

How appropriate to visit Philadelphia at this critical inflection point in our nation’s history, how meaningful to be able to share it all with my younger daughter—and how great to feel like I can travel afar, relatively safely, once again.

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.

Play Ball

· · 4 Comments

Today in the Northern Hemisphere, the sun appears at its highest point in the sky and daylight peaks. I always find it ironic that summer opens with a climax of daylight, which begins to ebb the very next day. But perhaps it is the best of balancing acts: as the days grow hotter through summer months, our exposure to the burning sun gradually eases.

Summer always feels full of promise. This weekend, we welcomed its nascent approach with that most summery of summertime activities, a baseball game. Our Fair City is home to the Red Sox minor league team, and we lucked out with a Father’s Day home game in our beautiful year-old stadium, on a comfortable afternoon of intermittent sunshine. Our eldest daughter joined us for a relaxing time with a great view above home plate. And we even won, 5-4!

Some people find baseball too slow. For me, especially in our hurry-up-do-it-now-before-you-miss-out society, the pace is perfect. There’s plenty of time to chat and just sit back, watch the game and all the playful side contests between innings (catch the ball and win a pie!), enjoy a ballpark snack, stretch and sing Take Me Out to the Ballgame at the seventh inning and Sweet Caroline (the Red Sox Nation anthem). I was having so much fun just hanging out with my family that I missed a few key plays, but no matter. The ninth inning packed in some real excitement, and we all had a great time.

For those few hours, I felt transported—away from all the stresses and worries of our present moment. It felt like a real mini summer vacation. I came home refreshed.

Recently I was listening to a discussion about language, how American English is full of violent metaphors to express resilience and success. A good performance is described as “killing it” or “blowing them away.” To be precise is to “nail” a presentation. We’re advised to “power through” pain or adversity, just “hang in there.” To ask someone their opinion, we say “shoot.” And that’s just a small sampling.

While baseball certainly has its own slugger language, the sport has also brought us some kinder, gentler expressions: “play ball” when it’s time to begin; “step up to the plate” to meet a challenge; bring your all when it’s “the bottom of the ninth.”

How would our world change if we framed our thoughts in baseball idioms? How would life be different if we took time to savor what’s right in front of us, enjoy the slow moments and pauses, sing and laugh more? It’s summer here in the Northern Hemisphere. No better time to find out than right now.

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.

Oasis of Calm

· · 1 Comment

Last week, I spent four days on Cape Cod by myself, just to focus on my own writing. It’s the second time in about a year that I’ve given myself this kind of mental and physical space to write. It was a wonderful, productive time, in a beautiful setting, surrounded by nature. I wrote and planned and walked nearby beaches of the Cape Cod National Seashore. Nothing like getting away from all the distractions and cacophony of bad news to reset my mind and soul, think about what really matters—and make my own art. Here’s a taste . . .

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.

Falling Back

· · 4 Comments

On Sunday we made the big shift, setting clocks back an hour to Eastern Standard Time and befuddling our brains in the process. Wait, the sun is nearing the horizon and it’s only four o’clock? Every year we go through this rigamarole, and every year I feel the darkness settle.

Sunlight in November is precious. I used to hate this month when we turn back the clocks, bringing nighttime all the more near. But in recent years I’ve come to appreciate it, despite too-early sunsets and crumbly brown leaves. The light is stark. It casts bare branches silver by day and coats them gold by late afternoon.

Nowhere is November light more beautiful than on Cape Cod, where Al and I spent the past weekend. We walked beaches at sunset, nature preserves at Noon, rediscovered a beloved bookstore frozen in time since the sixties, ate many good meals, and just enjoyed a much needed break. Here are some of my favorite photos from our trip. 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.

Course Correction

· · 2 Comments

Our long August weekend in Burlington, Vermont, already seems like months ago. But I’ve been thinking about one of our adventures, a two-hour sailboat cruise on Lake Champlain, ever since.

It was Friday afternoon, hot, humid, perfect weather to get out on the water. A family of four sat at the bow, beneath the jib, and Al and I sat aft, behind the mainsail. When I mentioned to our captain how much I love sailboats, he said, “Would you like to sail it?”

Now, it’s been about 40 years since I’ve taken sailing lessons, but I figured he would be right there, so I agreed. And that is how I found myself taking the helm, gripping the stainless steel wheel, and wondering what exactly I had gotten myself into. “Relax,” said the captain. Sure, I thought, easy for you to say, but I really don’t want to capsize our sailboat with that nice young family up front.

He told me to turn the wheel back and forth to see what happened. As I moved the rudder, the boat shifted direction slightly to left or right, with a momentary delay. It was as if wind and current had to negotiate a bit before our direction was determined. For the next twenty minutes or so, I did my best to sail us safely out of the harbor between the breakwaters and into the huge lake, focused on a cleft between two mountains on the horizon, as our captain instructed.

It was not easy. Wind and current competed constantly, and I had to make many small adjustments of the rudder to keep us on course. To me, it looked like we were zigging and zagging through the water, but the family at the bow seemed to be enjoying themselves, and the captain was not in the least concerned. Al just enjoyed being along for the ride.

When I handed back the helm, the captain attached the wheel to some cables connected to an internal computer, set the course, and the boat effectively sailed itself. But the computer constantly adjusted the wheel back and forth, just as I had, to balance out the tug of current and push of wind. So that made me feel better.

Staying on course is never a straight line.

Every moment of every day, we make choices. We’re buffeted by many options, distractions, demands on our time and attention. It’s easy to go on autopilot in our daily routines, following the familiar course of waking, grooming, meals, work, school, chores, homework, childcare, exercise perhaps, maybe pursuing a hobby or reading a book, Zooming, or just collapsing in front of the TV or computer before bedtime.

As I was sailing on Lake Champlain, gripping the helm, I could feel the tug and pull of water below and wind above. I was acutely aware of how my hands on the wheel controlled the rudder and direction of the boat, how turning it a little too far to left or right would steer us off course. I had to pay attention.

It was not relaxing. And I couldn’t maintain that level of focus for more than twenty minutes on a day when I wanted to just be on vacation. I don’t think it’s realistic for anyone to be fully alert for every waking minute—or even healthy, for that matter. Witness the burnout of our front line workers battling Covid, 24/7, throughout the pandemic, who so desperately need rest and recuperation.

But I do think there is a lot to be said for being more mindful of our actions, how small actions can add up to big ones with significant consequences, for better or worse. For me, and for Jews around the world, today is Rosh Hashanah, the Jewish New Year, a time for introspection about the year past and reflection about how to do better going forward.

It’s been a tough year, navigating through the pandemic, which seems endless. I’m setting my sights on trying to be more conscious of the pushes and pulls that can throw me off, the ways words and worries steer and jostle my actions and those whose lives I touch, and how, with a little more care, a little more attention, I can chart a better course—not only for myself, but for others, known and not yet known.

Sail on, Dear Reader, sail strong.

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.