Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Dated

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Several weeks ago, after a heavy rain, I discovered that water had seeped into our basement and damaged a couple of cardboard boxes that had been lying around for far too long. So on Sunday, Al and I finally got around to sorting through the contents, to see what, if anything, was worth salvaging.

Now, of the two of us, I tend to be the one who wants to get rid of stuff that we no longer need. But one of the boxes contained items I was loathe to part with: all my old calendars and planners. Fortunately, my husband humored me, especially since I was able to find a place to store them, in chronological order—half a drawer in an old filing cabinet in the basement.

Why bother? you may well ask. The thing is, those calendars are a record of my life. Even as I have kept journals on and off over the years, I have always kept calendars. And this batch dates back to my freshman year in college. There are notes about deadlines for college papers, the weekend I almost broke up with my high school boyfriend (that happened a month later), searching for my first apartment in grad school, interviews I did while working as a journalist, preparing for my wedding to Al. There are also cryptic entries about the time, right after Thanksgiving the first year we were married, that Al had to have emergency surgery because his spleen ruptured from mono. These are landmarks of a lifetime.

At some point, I know I’ll need to part with them. When we finally downsize someday, there will not be room for all the memorabilia. As it is, I have my old college footlocker filled with journals dating back to sixth grade. And more journals on shelves in my office. Plus all my bullet journals of the past several years. Every so often, I’ll have a reason to dig back into them, to find when I did what.

All the more so, as my memory is not as sharp as it once was. My rheumatologists tell me that scleroderma can cause brain fog (beyond the aging process) and I definitely feel it settling in, a very unwelcome guest.

Do all the details really matter? I don’t know. Writing things down has always been my way to preserve the present and plan for the future. Now, all those notes, accumulated over decades, are my keys to recalling my past. And I’m just not ready to throw them away.

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.

Quietude

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I skipped the fireworks this July 4th weekend. I just wasn’t up for it. Last week was such a heavy lift in so many ways, with so much at stake in our democracy. Al and I had no special plans for the holiday, which was fine. I had a long to-do list and needed time to think.

When I finally got up from my desk yesterday for a late afternoon walk around the neighborhood, I was expecting to hear boisterous backyard parties, music, even the pop of firecrackers. But to my surprise, it was quite still. No one else was out walking, unusual for the time of day. Some neighbors had decorated their homes with American flags. One had strung red-white-and-blue bunting from the windows. There were a few homes with a line of cars parked out front, and I smelled some barbecue. But no laughter drifted on the light breeze.

On a picture-perfect Independence Day, the loudest sounds were the chatter of house sparrows and the pensive coos of mourning doves. A few bunnies hopped across lawns. A couple of neighbors, pausing from tasks, said hello. My hydrangea burst silently into full bloom. And that was it.

I am one who enjoys moments like these. As I walked, I was grateful for the peace, the quiet, the contemplative mood. In other neighborhoods across our country, that is not a given. Nor is it a given in other countries around the world.

I hope that you and yours are able to find quietude when and where you seek it. We all need time, right now, just to be.

I’ll be taking a couple of weeks off to do just that, back later in July. Peace.

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.

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.

Play Ball

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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.

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.