Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Room to Grow

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Three years ago, I planted my first bonsai, a Brazilian rain tree. Miraculously, it has survived (unlike my second bonsai, a juniper that I neglected to water often enough) and thrived. Thrived so much, in fact, that it needed a new, larger pot.

On Sunday I attended a re-potting class for tropical bonsai. Sure enough, when I extracted my little tree from its terracotta pot, its roots were dense and intertwined. The first step in re-potting a bonsai is to carefully tease out the remaining soil between the roots as well as loosen the roots themselves, which look like a tangle of pale hair. This I was able to do and, with help of my instructor, settle my bonsai in its new home, an oval, aqua-glazed pot.

By the time I was finished—having tapped in all of the potting mix with a chopstick to eliminate any air bubbles, re-wired the bonsai to secure it to the pot (my instructor did that part), wired some more branches to train them in an aesthetically pleasing shape, pruned excess leaves, and given the tree a thorough soaking—my bonsai was not looking very happy. Brazilian rain trees close up their leaves when sunlight diminishes or they are stressed.

But back home, on its bed of pebbles that trap moisture, spritzed with water, and out of the sun for a few days, it perked right up. By Monday morning, it was the beautiful bonsai you see in the photo, above.

It was sweltering at the bonsai workshop, and I was not feeling great, either, coming down with some kind of respiratory something (so far, still COVID negative, thank goodness), so I lay down for a nap just before 2:00 p.m.. Then my phone started beeping with the news of President Biden’s momentous decision to drop out of the race and endorse Kamala Harris as the Democratic nominee for president.

What a tumultuous roller coaster of a week in our nation. I am deeply grateful for our President’s leadership and putting country first. And grateful that we have room to grow beyond this dark period to build a better future.

How my bonsai began in June 2021

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.

Crossroads

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I find it difficult to write about anything, given the weekend’s terrible news here in the U.S. So I share with you an excerpt from President Biden’s wise words Sunday night. Whatever your politics, we all need to take this to heart. Period.

Tonight, I want to speak to what we do know: A former president was shot. An American citizen killed while simply exercising his freedom to support the candidate of his choosing.

We cannot—we must not go down this road in America. We’ve traveled it before throughout our history. Violence has never been the answer, whether it’s with members of Congress in both parties being targeted in the shot, or a violent mob attacking the Capitol on January 6th, or a brutal attack on the spouse of former Speaker of the House Nancy Pelosi, or information and intimidation on election officials, or the kidnapping plot against a sitting governor, or an attempted assassination on Donald Trump.

There is no place in America for this kind of violence or for any violence ever. Period. No exceptions. We can’t allow this violence to be normalized. . . .

Disagreement is inevitable in American democracy. It’s part of human nature. But politics must never be a literal battlefield and, God forbid, a killing field.

I believe politics ought to be an arena for peaceful debate, to pursue justice, to make decisions guided by the Declaration of Independence and our Constitution. We stand for an America not of extremism and fury but of decency and grace.

All of us now face a time of testing as the election approaches. And the higher the stakes, the more fervent the passions become. This places an added burden on each of us to ensure that no matter how strong our convictions, we must never descend into violence.

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: Kristaps Ungers

Sew It Goes

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I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

Hand-off

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I’ve been dropping things lately. This is largely due to calcinosis in my thumbs that makes it harder to hold on. My dexterity waxes and wanes, depending on how a particular piece of calcium is working its way out through the skin, and currently some shards are on the move.

And so, Sunday night, when I tried to lift a large pot of cooked pasta over to the kitchen sink to strain out the water, you guessed it, the pot slipped and I splashed hot pasta water all over the kitchen floor. Thankfully, not the cooked pasta! And I managed to move out of the way so I didn’t get burned.

But I was really annoyed with myself. Al was home, fortunately, and calmly cleaned up all the water on the floor with old newspapers and towels, while I groused.

Finally I calmed down. And the meal turned out well.

I don’t usually get so frustrated with my hands. I try to take very good care of them and respect their limitations.

Which, of course, are my limitations. It’s a strange aspect of this disease, that my hands can look and feel so alien and disfunctional, but they remain a part of me. Even after four-plus decades living with scleroderma, I sometimes still find this surprising. I see my hands all the time, but there are moments when I’ll catch their reflection framed in a mirror and am shocked at how bizarre they look.

Then I remind myself that they are me, that regardless of how strange my hands appear, I’m still able to do as much as I do. And to be grateful for that. And to forgive myself for getting frustrated. It just is.

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.

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. 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.