Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Choose Humanity

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I am writing on Monday afternoon, October 7, the dark one-year anniversary of the terror attack by Hamas in Israel that launched what now seems like a never-ending war. Twelve-hundred people, mostly Israelis, were slaughtered that day and hundreds taken hostage. There remain 101 hostages in captivity in Gaza, tens of thousands of innocents in Gaza killed as terrorists hide behind civilians, and now the growing risk of regional war in the Middle East.

In September, Al and I traveled to Israel to visit family and also to participate in a peace mission organized by MEJDI, a touring company founded 20 years ago by two friends, an Israeli and a Palestinian. They specialize in dual-narrative tours in conflict zones. Over five intense days, we met with people across the political spectrum to hear their stories, engage in dialogue, and explore paths to a just peace. I am still processing all that I learned and heard.

Among those we met were family members of Israeli hostages, a former Gaza resident, an Arab Israeli journalist for Ha’aretz, members of the Druze and Bedouin communities, a Palestinian Christian minister, a Palestinian bookstore owner in East Jerusalem, refugee advocates, IDF soldiers, and many dedicated peace activists. We visited guests in Tel Aviv, Jerusalem, near Haifa in the north and in the Negev in the south. We attended a massive rally in Tel Aviv to bring the hostages home and achieve a cease fire. We had long and meaningful conversations with our fellow tour members of all faiths, as well as our two guides—one, an Israeli whose cousin had been killed on October 7 and whose body is still held hostage in Gaza, and the other, a Palestinian from East Jerusalem who is a medic and was a first responder at the attacked kibbutzim.

There were many points of view, much grief and angst. But the message that resonated across all of our discussions was this: There are two peoples with legitimate claims to the same land, who must find a way to live in peace together. The journey is long and hard. Don’t pick sides. Choose humanity.

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.

What I Have in Common with Simone Biles

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My favorite unit in high school gym class was gymnastics. Not that I was any good at it. Decked out in our light-blue gym uniforms (one-piece cotton bloomers with a snap front that were the antithesis of style), I would attempt a simple vault over the horse, try to calm my fear of heights as I walked on the balance beam (in sneakers!), and swing from the uneven bars. The cool girls could do a penny drop. Not I.

Even still, I enjoyed the challenge (except the beam). Maybe because I was just competing against myself and not in my usual role as the weak link in a team sport. Maybe because it made me feel strong. My one big accomplishment in my senior year was clambering up a thick rope to the high gym ceiling, something I never expected to be able to do.

Maybe that’s why gymnastics has always been my favorite part of the Summer Olympics, especially watching young women achieve seemingly impossible feats of strength and coordination. Even if I could never do that myself, I thrill at their achievements. This year was supercharged by Simone Biles’s triumphant return. What a marvel to behold!

Much as I admire Biles for her extraordinary athleticism, I admire her all the more from what I learned in a profile in The New York Times: that Biles and I share a particular love—of turtles. As a young athlete, she went at her own, unique pace to build her repertoire, not caving to unrealistic goals set by coaches. She knew herself and what she needed to learn and grow, in her own time. Her mother, Nellie, called Simone her “little turtle.” According to the article, Nellie used to tell her, “Don’t worry that you are moving slowly. Just be sure of what direction you are going in.” Before every meet, she would give Simone a tiny porcelain turtle. Others picked up on the theme, and she now has a huge collection.

I, too, have a collection of all kinds of turtle figurines. This started when I was a marketing director at a small New England college. I used to give little plastic turtles to my staff as a reminder to take the time to do the job right, rather than rushing and having to spend twice as long fixing it. This guidance was deeply appreciated, especially in a pressure cooker environment rife with unrealistic demands.

Over the years, family and friends have added to my collection, which resides on the bookcase in my home office. I am known for fawning over turtles in their natural habitats. I remind myself that often the best way to solve a problem is to approach it as a turtle, especially when it comes to figuring out the plot in the novel that is bedeviling me at present. Or managing yet another digital ulcer. Turtles have become my go-to metaphor for resisting social and cultural pressure to always be doing, busy, rushing, as a measure of self-worth and accomplishment.

Biles astounds us with her superhuman athleticism, but she became a GOAT (greatest of all time) gymnast by taking her time to get there, including her difficult and courageous decision three years ago to drop out of the Tokyo Olympics when she knew she needed to stop. She draws on her own mental health struggles and early years in foster care to promote the non-profit Friends of the Children, which supports mentors of foster children and other kids at-risk, at an annual international gymnastics invitational in Houston. Sales of a toy mascot help to raise money for the non-profit.

It is, of course, a turtle.

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.

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

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.

False Alarm

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I had a routine mammogram a couple of weeks ago. Not my favorite “non-invasive” test, as any woman knows. As the tech was arranging me for the inevitable squash grip of the mammography mammoth, I asked her why she had chosen this particular technical specialty. Her answer: “Because it saves lives.”

Fair enough. Fifteen minutes later, I was glad to be done with it for another year and on my way home.

Or so I thought. A week ago Sunday, I received an email about a new message for me in MyChart, my online portal for medical records and communication with my teams here at home and at Boston Medical. I took a look. No problems in the right breast. Here’s what it said about the left: “Indeterminate calcifications in the upper outer quadrant require additional views. Diagnostic mammogram is recommended for further evaluation.”

Calcium deposits in breast tissue (I learned, from a quick internet search) can be a precurser to breast cancer. A letter in my file indicated that I should set up an appointment for another series of X-rays, adding this supposedly reassuring sentence: “Most such findings are benign (not cancer).” Probably just a nuisance, I concluded. But I wondered, with so much calcinosis in my fingers, could this actually have something to do with my scleroderma? And what would that mean?

As luck would have it, I had a routine appointment with my Boston Medical rheumatologist the next day, so I filled him in and asked what he thought. Was it possible to have calcinosis from scleroderma in breast tissue?  Sure enough, yes, it’s possible. Indeed, it’s possible for calcinosis to show up in all kinds of strange places. He shared a research study with X-rays of some pretty dense (and very uncomfortable-looking) calcification of breast tissue. We talked at length about how to proceed, how to avoid unnecessary diagnostics, and more, and concluded that he would send a referral to Boston Medical’s breast health clinic, which is one of their top specialty clinics, to get me into their queue, just in case.

I went home in a terrible mood. Before I had thought this was probably nothing, but after that conversation, it felt like something more serious. I called the radiology clinic at home and was able to get an appointment for first thing the next morning to do the additional mammograms. I was told that I would get results at the appointment, which I appreciated.

When I got to radiology last Tuesday morning, I told the tech that I have calcinosis from scleroderama. She did not think that would be a likely factor in the results, but I asked her, nonetheless, to tell the radiologist. After three very squished close-up scans of my left breast, I waited in the exam room for the outcome. The radiologist came in and said the words I was hoping to hear: not related to breast cancer. I have “calcification of some small vessels” from scleroderma. Nothing to worry about.

What a relief! When I got home, I wrote my rheumatologist about the results and asked what that meant. Would some calcified small blood vessels lead to eventual tissue death? Was there anything more to understand about this? His answer: “Calcinosis unfortunately remains a mystery.” I can live with that. No sense speculating about it. I’ll find out in due time if it matters or not, and meanwhile, there’s nothing to be done.

So, there you have it. This very strange disease continues to throw some very wild curve balls. But at least this episode wasn’t as scary as it seemed. I write this post for you, Dear Reader. Mammograms do save lives. They can also create uncertainty and may require clarification. In case you get a similar worrisome result from a mammogram, be sure to advocate for yourself and explain your full medical situation. It matters.

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: John Cafazza