Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Airborne Again

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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.

How My Garden Grows

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I may get a purple thumb from Raynaud’s, but I no longer feel resigned to a purple thumb for plants. At least, as far as my year-old bonsai is concerned. My little Brazilian rain tree grew so lush over the past year that it needed quite a haircut this weekend, when I went back to the bonsai garden for a lesson in pruning.

This involved a bit of serendipity, or “going with the flow” or just trusting that things would work out. I had signed up for a class that I thought was about pruning, but actually was intended as a workshop for a specific bonsai technique called candling, which involves trimming away new growth on certain bonsai pine species. As it turned out, however, I was not the only one who misunderstood the workshop description, because two of the other students who came also had tropical trees, and the fourth person had the wrong species of pine.

No matter. Our teacher was very flexible and turned the session into a learning opportunity for each of us to do the pruning that our bonsai needed. Since I got there first, he was able to help me reshape my Brazilian rain tree to reveal more of the trunk and also to remove the wiring that we’d used to train it last summer. In fact, the tree had grown so much that the wiring was starting to bite into the trunk, so my timing was good.

And I was also able to accomplish my second goal—starting a new bonsai. I had hoped I could do this without signing up for a separate beginner’s class, and timing was, again, just right. For months I’ve been wanting to have an evergreen bonsai, a juniper, and I found the perfect little tree, with a beautiful recumbent swoop, and an aqua pot, just as I had imagined. With my teacher’s help (I can’t do some of the twisting and tightening of wires that’s required for anchoring the bonsai once its roots are revealed) I potted my new little beauty.

Now both bonsai are enjoying fresh air on the deck, near the hummingbird feeder that awaits a visitor and the bird feeder beyond the kitchen window that is filled with safflower seed—a favorite of cardinals, chickadees, house finches, house sparrows, and especially mourning doves, which are just beautiful to see up close. Squirrels, however, are not fans, which was my hope. No more jumping on the “squirrel-proof” feeder to spill sunflower seeds all over the ground.

Watching the birds and my bonsai is a true source of fascination and calm. Whatever craziness dominates the news soon dissipates as I sit down at the kitchen table and look out the window, or quietly sit on the deck and make myself part of the scenery, so the birds come to visit. We all need a personal oasis these days. I’m grateful to have found mine right  in our backyard.

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.

Passing Storm

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It’s pouring rain as I write on Monday afternoon, much needed after a very warm weekend here in Central Massachusetts. I was planning to go out and run some errands, but fortunately I noticed the darkening sky and heard rumbles of thunder as I was getting ready. So here I am, back at my computer, waiting out the storm.

One never knows what is next.

All of us who live with life-altering disease know this feeling all too well. While we may be able to influence outcomes, given healthy choices, good access to quality care, and enough resources, our bodies eventually deteriorate. And we don’t control the timeline. The older I get, the more I appreciate that the present moment is the only reality. Paying attention is essential. So is the ability to pivot.

Now the sky is lifting and the rain, easing. Thunder grows fainter, confirmed by the radar on my phone app that the storm has passed. We have more information and tools at our disposal than at any previous time in history to help us make thoughtful decisions. But ultimately, making the most of our time on this spinning ball of earth and water and sky means simply to stay present.

I’ll be heading out soon. Be well, Dear Reader.

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: Dave Hoefler

Turtle Lesson

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One of the ways I deal with all of the bleak news these days is to find inspiration in nature. I love watching the birds at our backyard feeder, and the squirrels never cease to fascinate (even as they annoy). Anyone who knows me well also knows how much I love turtles, for their persistence and pace, so counter to our frenetic, busy-for-the-sake-of-busyness lives.

So, when a video popped up in my Twitter feed about turtles joining together to calm and rescue a struggling turtle, it made my day. Here’s the Tweet. If you click on the blue play icon, you should be able to watch it. Or click on the Watch on Twitter button:

If turtles can intuitively band together to help another, flailing turtle to right itself, how much more can we humans accomplish together to care for each other? Think about it.

Image: Timothy Perry

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

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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.