Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Time Warp

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Years ago, when our daughters were young, we used to vacation every summer on Block Island, off the Rhode Island coast. Back then, it was still affordable to rent a cottage for a week. The island was quaint, quiet, family friendly, with lovely beaches and nature trails to explore.

Thirty some-odd years later, other than real estate prices, which average in the millions of dollars, and very expensive rentals, the island remains in many ways frozen in time, with much open space still protected by the Nature Conservancy. As you approach on the ferry from Point Judith, the waterfront looks almost exactly as it did on our first arrival, when our eldest was barely three years old.

So it was on Sunday, when the four of us made a day trip to Block Island together for the first time in about ten years. There is something immediately calming as the ferry backs into its dock, to see all the familiar old hotels and the flag gaily waving atop the cupola of the National. We had planned a weekend on the Block last summer, and I’d rented a great house and secured our ferry car reservation, when, of course, the pandemic scuttled all that. While we couldn’t do a weekend this year, at least we could make a full day of it.

I’d originally hoped we could rent bikes to ride around to some of our favorite spots, but that was not to be. I haven’t ridden a bike in decades, and when I tried one out, I could not balance—something to do with inner ear issues that have been plaguing me for several years, now. Mopeds, which we’ve always avoided, turned out to be not the best option, either (we did check them out, but decided to pass).

Instead, we found the most affordable alternative: walking and taking taxis. Our first stop was the town beach, where we ate lunch that we’d brought along, rested, swam (Al never misses an opportunity to jump in the waves), and walked the shore. As my eldest said, it’s just relaxing to lie there and listen to the surf and the friendly chatter, not too crowded, not too boisterous. Just families of all kinds, having a good time.

Then we caught a taxi to what’s known as “the Spit.” This is at the northernmost tip, near the North Light, where ocean currents from either side of the island slap together as waves cross paths, foaming and spuming. It’s a long, challenging walk for me from the parking lot over rocks and sand, but well worth the trek. Along the way, we were treated to a pair of fledgling, fluffy grey sea gulls, peeping to their mother, who kept close watch as they wandered near the dunes, and at least eight seals playing in the surf, popping their long black heads above the water before diving gracefully out of sight. We also harvested handfuls of sea glass.

On our taxi ride back into town, our friendly driver, who came to the island 42 years ago for a visit and decided to stay, slowed down to show us a pair of breeding ospreys. Our very first visit to the island in 1991 occurred in the midst of Hurricane Bob, which passed directly over. Turns out our driver was in charge of one of the evacuation sites during the storm, at the medical center. We had found shelter for the day at the only school on the island. So, we reminisced. Far from scaring us off, the hurricane only endeared us more to this special place. It was on that trip, as well, that I realized I was pregnant with our youngest, and Al and I joked giddily about names for the baby starting with B.

Sitting on the top deck of the eight o’clock ferry back to Point Judith, after a delicious fish dinner, the ritual visit to the Ice Cream Place, and noodling about the shops, we said goodbye to the North Light winking over the Spit as the sky turned dusky. Halfway on the hour’s crossing, just above the slate blue mainland, fireworks sparkled.

Magical, once again, if just for a day, to slip back to simpler times, with my dear ones.

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.

Stepping Out

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Al and I didn’t have any plans for July 4th. The weather was chilly and rainy on Saturday, and more of the same was predicted for Sunday. But we lucked out. Sunday was still overcast, but no rain predicted. So, on a whim, we set out for Newport, R.I., for the afternoon. I hadn’t done the Cliff Walk along all the famous seaside mansions in many years, and Al suggested we also visit the Green Animals Topiary Garden, which I’d never seen.

The topiary and flowers were stunning, and their scent, so sweet and relaxing. Even as my feet were really tired by the end of the Cliff Walk, the views were well worth the trek. By late afternoon, the sun came out. We finished off the day with a delicious Italian dinner, not far, we discovered, from St. Mary’s Parish, where John and Jacqueline Kennedy were married in 1953.

Wherever we went, we heard and saw people from many different countries and backgrounds, the wonderful, rich mix of cultures that makes America truly great. As we drove home, fireworks bloomed on the horizon. A perfect Independence Day.

Profound thanks to all who have worked so hard to get us through the pandemic, so we can feel safe going out again. Vaccines work. Happy Summer. Enjoy the view . . .

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.

Purple Thumb Challenge

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I have never been good at keeping houseplants. I’m most successful with forgiving plants that don’t need much water or attention, like the snake plant that lives on our kitchen table. Every few weeks I remember to soak it in the kitchen sink, give it a good misting, and then leave it be until the next time I remember. It never seems to mind.

All that is about to change. For a combined birthday-Mother’s Day gift this year, Al surprised me with a trip to a bonsai greenhouse last month. I walked around all the many different bonsai trees for sale, but didn’t see one that really struck my fancy. Speaking with one of the staff, however, we found out that I could take a workshop and start my own.

Of all the suitable species, I was most taken by a tree with very delicate, compound leaves that looked like tiny water droplets. This, we learned, was a Brazilian Rain Tree. The greenhouse had an exquisite specimen that turned out to be 75 years old. Something to aspire to, certainly. They were getting a new shipment in mid-June, so I signed up for a workshop on Father’s Day. Al was happy to come along and watch.

Meanwhile, I bought a book about bonsai to learn more. And discovered how much care is actually involved. Bonsai need daily watering and lots of attention. It’s a bit daunting for someone with a purple thumb. But I’m intrigued by the artistry that’s involved to train a tree, in miniature, into a living sculpture that honors nature.

So, on Sunday, we went to the workshop. I found a little Brazilian Rain Tree and a pretty terracotta pot, and following our teacher’s instructions, set to work.

You must first set up the pot with wires and a piece of mesh in the bottom—the wires are used to hold the bonsai roots in the shallow pot. Then you add a layer of very porous bonsai soil. Next comes removing the tree from its pot. You have to clear part of the topsoil to reveal some of the roots—this is essential to bonsai aesthetics—then poke away soil that is entwined with about two-thirds of the lower root system, and trim back the longest roots.

Then you place the tree in the pot and spread out the remaining root system, twist the wires in place to stabilize the tree, and fill the rest of the pot with more topsoil. My teacher had to help me with some of this, because my hands aren’t quite strong enough. But I did much of the prep.

Then came some pruning (Brazilian Rain Trees have thorns) and learning how to clip away deadwood. The next-to-last step involved wrapping a bendable wire around the trunk and up one branch that we bent into a curving upright stance—to train it as an apex for the tree’s eventual shape. Most of this I was able to do myself.

Now it was time to soak it with water, essential for my little tree’s survival. And it was done. I was really pleased with the result. And hoping I wouldn’t kill it.

Back home, all afternoon and evening, I kept checking the soil to see if it needed more water. Then I started to worry, because its leaves were no longer open to the light, but seemed to be drooping. Fortunately, a quick bit of Internet research revealed that Brazilian Rain Trees close their leaves in diminished light and at night, and open them in the day. So far, so good.

And so, I begin my adventure as a bonsai gardener. I understand this can become quite an addictive pastime. Already I feel a special relationship to my little tree and look forward to tending it and watching it grow. With persistence and some luck, maybe I’ll turn my purple thumb green, after 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.

Make Way for Ducklings

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I haven’t seen my sister in two years—that is, until this Sunday, when we got together for a beach-side picnic in Maine. She and my brother-in-law had finally been able to venture east (delayed a year due to Covid) to visit their eldest daughter and her husband. So Al and I and our eldest daughter drove up to see them for the afternoon. The weather cooperated, the food was delicious, and it was great to visit again, in person.

Despite all that has elapsed in the past two years, however, it also felt as if we were just catching up, like we always have. There is something very odd about how time collapses in our post-vaccination transition. For me, at least, there are no crashing cymbals or pyrotechnics when I get together again with people I’ve missed. It’s simply as if we are picking up where we left off—a good thing, but surprising, all the same.

We’ve all changed, of course, one way or another, in surviving a once-in-a-century (I hope) global pandemic. For some, the experience has been gut-wrenching, an utter up-ending of home, work, and all they hold dear. I and my loved ones have been most fortunate, staying well, maintaining income, feeling safe overall as we’ve learned important lessons about patience and persistence. We’ve taken advantage of robust means of keeping in touch that mitigate long separations. All of this contributes, I suppose, to the surprising ordinariness of our Sunday reunion.

My sister and I took a walk along the beach, settling on a rocky outcropping to watch several broods of ducks riding the waves. This was actually the most surprising aspect of our visit—each pair of mature ducks (I’m guessing, from my field guide, American black ducks) was followed by at least a dozen ducklings, paddling along in a row. There must have been 50 or 60 ducklings, all together, learning to traverse in choppy surf stirred by a stiff off-shore breeze.

As we watched, one brood came ashore on the rocks, peeping and flapping to shake off the sea, following their parents’ example to fluff their feathers and waddle about. They were utterly adorable.

“What do you think they’re saying to each other?” I asked my sister.

“I’m hungry!” she proposed. A good guess.

I wondered how such tiny, vulnerable creatures would survive in such rough waters. What if they were swamped by a wave? What if they were swept into one of the jutting rocks? And yet, to them, this was just a completely normal afternoon, on a sunny, windy day, on the coast of Maine, learning to swim.

We, too, have, learned to ride the waves of this pandemic year. Reuniting after months and months spent Zooming and masking and fretting about an unknown, unseen virus that could level a death blow without warning, after miracle vaccinations and boredom and relief that the worst really does seem to be behind us, at last—I can think of no better ending, and beginning, than savoring the humbling wonderment of dozens of ducklings, finding their way in the world.

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.

Inclination

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I was chatting with a neighbor the other day, a geographer who studies the impact of climate change, and he told me that in twenty years, Massachusetts may well have weather more like Virginia’s, and Maine will be more like Massachusetts. Certainly feels that way here in Central New England over the past few days, with temperatures hovering around 90° F.

The one advantage for me, personally, is that my spring digital ulcers are finally healing in the heat (with some help from a round of antibiotics). As long as it’s not humid, or so hot that I must relent and turn on the A/C, I flourish in this weather.

So, despite the temperature, on Saturday afternoon, I walked to a nearby park in our fair city, a green oasis in the midst of traffic and stores and homes and apartments. I’ve been trying to build up my physical stamina on this three-mile route, which includes following a circular, inclined path that winds up a hill—a drumlin, geologically speaking, an oval mound of moraine left behind by a receding glacier millennia ago—to a clearing at the top, where there’s a flagpole and some granite benches. I made it without stopping to catch my breath, this time, an accomplishment. A pleasant breeze and the canopy of trees kept me comfortable along the way.

As I walked the spiraling trail, I recalled something from high school physics, how the angle of an inclined plane affects the amount of effort it takes to move an object upward. The trail’s gradual slope was a perfect example. There were a number of detours, paths that led more sharply up to the top, which I avoided, because they would have required too much exertion. No, I just kept walking gradually higher around the hill, which enabled me to maintain an even stride, manage my breathing, and keep going.

At the flagpole clearing, I rested on a bench and watched a jet high above, tracing a line that disappeared behind a large cumulus cloud, waiting for it to reappear as it flew farther west. I listened to the hum of traffic below, beyond the trees, and a loud voice on a speaker somewhere ranting about something. I hummed a melody and waited for my heart to stop pounding from the climb, gradual as it was. I inhaled the fragrance of flowering trees and evergreens. I wondered who came up here to mow the grass. I prayed for insight about our troubled country and planet and how to find my role in all of this. I left when the jet disappeared behind another cloud, and began my gradual descent.

I didn’t get any big answers to those big questions, which hover in my mind every day. But the spiraling walk up the mound-print of an ancient glacier has given me an inkling—that for all the valid urgency of the present moment, there is also value to patient inquiry, to slow and steady progress, to finding answers that stand the test of time. For one who needs to conserve energy on the climb, as age and scleroderma dictate, that’s the path I’m inclined to follow.

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: Zoltan Rakottyai