Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Bucket List Visit

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I have loved the art of Paul Klee for decades. His whimsy, brilliant use of color, and evocative abstract works are an endless source of fascination and inspiration. He is also a personal hero. During his last five years, Klee lived with scleroderma—and despite physical limitations, this was his most prolific creative period.

Born in Switzerland in 1879, raised in Bern, Klee studied art in Munich and eventually settled there in 1906. His imaginative works and art theory grew out of his involvement with Der Blaue Reiter group of German Expressionists, including Vasily Kandinsky, August Macke, and Franz Marc, as well as his travels to Italy and Tunisia, and his years during the Weimar Republic teaching at the Bauhaus and the Düsseldorf Academy. In 1933, the Nazis dismissed him from his post in Düsseldorf, and he was labeled a “degenerate” artist.

Klee and his wife, Lily, returned to Bern and lived there until he died at age 60 in 1940. I have long wondered if the trauma of exile, losing his close circle of fellow artists and his reputation, as well as the ability to exhibit his work, all contributed to his illness. His symptoms of systemic sclerosis emerged after a bout with the measles. I’ve asked my rheumatologist at Boston Medical about Klee, and while there is no clear answer to how he contracted scleroderma (same for all of us with the disease, even 90 years later), he explained the latest theories are that scleroderma is triggered by a virus. Another theory that I just discovered is that Klee’s exposure to certain chemicals in his oil paints and thinners may have been a contributing factor.

In any case, whenever I go to art museums, I seek out Klee’s works. So, this summer, after our very intense visit to Israel, we traveled to Switzerland for a few days in Bern to visit the Zentrum Paul Klee, the largest collection and archive of his art in the world—a visit at the top of my bucket list. I was hoping to see some of his famous paintings of abstract angels—playful, sorrowful, mysterious, comforting. Unfortunately, none were on display, nor any of his largest paintings. But the standing biographical exhibition did not disappoint, as I discovered some of his smaller works that I had only seen in books. And there were also three of Klee’s wonderful puppets that he made for his son, Felix. After we toured the museum, we walked around the Zentrum grounds, the sculpture garden, and paid our respects to Paul Klee’s grave.

Here are photos of a few of my favorite art works and the museum, as well as Bern from a scenic overlook at a different location. Hope you 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.

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.

Be Prepared

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Many years ago, I was a Girl Scout. That’s 15-year-old me in the middle, with the long pigtails and sunglasses, on a troop trip to D.C. in 1969. (And no, the Senior scout to my right is not smoking a real cigarette!) All that I vaguely recall about that trip, back in the day when Girl Scouts wore real uniforms and I was a Cadette scout, was that it was incredibly hot and humid. I’m sure we had fun. By that fall, however, I decided I’d had enough of scouting, though I don’t think it had to do with the trip. I just wasn’t interested anymo0re.

But I learned a lot in the half-dozen years that I participated, first as a Brownie and Girl Scout in elementary school (my mom was the troop leader), and then as a Cadette as a young teen. I gained some important life skills, including how to sew my own clothes, how to build a campfire, how to camp in a snowstorm, how to run a patrol (team), and how to plan. Our patrol in elementary school was called the Martians, and we definitely put on the very best skits of the entire Troop 151.

“Be Prepared” is, of course, the Girl Scout’s motto—or, at least, it was back in the day. Same for the Boy Scouts. And, notwithstanding the (not PC) Tom Lehrer parody of 1953, that motto is very much a worthy goal.

Which is why (here comes the thematic hairpin turn) I was really glad to discover last week that the new Covid vaccine was available locally, because we are soon going to be traveling again. Al and I both were able to get the jab, which did not hurt at all. I began to feel the vaccine moving through my system within minutes, however, and was a bit achy and tired for 24 hours. And that was it. This version was by Pfizer, which tends to be easier for my body to handle.

Covid is still swirling around us, and the uptick in cases is not to be dismissed. We had already gotten Paxlovid to take along, just in case either of us got sick on our trip, (once a Girl Scout, always a Girl Scout) and I’ll still pack that along with some Covid tests, but I am much less concerned about that potential problem now. I hope my experience encourages you, Dear Reader, to get your own updated Covid vaccine sooner than later. Well worth avoiding the virus, especially for those of us with compromised immune systems.

I’ll be offline for much of September, back by early October with tales of our adventures. Be well.

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.

Cutting Loose

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As I’ve written a few times over the years since I began this blog, packaging is the bane of my existence. On Monday morning, I was wrestling with a plastic package for a nasal spray that I use occasionally to clear my sinuses and reduce post-nasal drip and related cough. The thing was hermetically sealed. No way to open it without a pair of sharp scissors. And even that was a struggle. I ended up cutting off one edge, then slicing straight down the middle of the plastic, then adding a diagonal cut to release the treasure so ridiculously enclosed. Throughout this mission, I had to be careful not to hurt my fingers on the sharp edge of cut plastic.

Why is this necessary? Are the manufacturers that fearful of someone opening their precious package in the store and stealing the goods? As it is, you can’t even access this product in a CVS or Walgreens without summoning a sales clerk with a set of keys to open the plastic-covered shelving, which has become ubiquitous in recent months to prevent shoplifting (another dubious trend).

And must we really rely on so much plastic for packaging? All that discarded plastic eventually breaks down into microplastics, which have worked their way into the global ecosystem—and our bodies. Microplastics, defined as less than 5 millimeters across, have been documented in human lungs, maternal and fetal placenta tissues, human blood and breast milk. They have been detected on the top of Mount Everest and in the depths of the Mariana Trench. They are in the air, our food, our water. Here’s a really thoughtful overview of the extent of microplastics’ spread from Science News.

While research into the health impact of ingested microplastics is not yet definitive, there is ample reason for concern. At the very least, according to research immunologist Nienke Vrisekoop of the University Medical Center Utrecht, microplastics are a form of air pollution. We know that familiar forms of air pollution, such as smog and car exhaust, stress our lungs. Vrisekoop, who is quoted in the Science News article, expects the same will be true of microplastics.

What to do? We can’t avoid plastics altogether, not yet, anyway, but at least we can try to reduce their use in our daily lives. I’m looking at you, bottled water. I may not yet have an alternative to that nasal spray, but I’m considering writing to the manufacturer to let them know what I think of their packaging. And of course, recycling plastics is a no-brainer.

There’s a famous line in the 1967 film The Graduate, when a very young Dustin Hoffman, at a college graduation party hosted by his parents, is advised of the one word that should define his future: “Plastics.” Indeed, it has defined all of our futures. Just not in the way we expected.

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: Naja Bertolt Jensen

A Pain in the Back

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Last Thursday evening I went to a yoga class at a nice studio not too far from home. I’ve taken a fundamentals class there several times over the summer to try to improve strength and flexibility, with mixed success. But I had one more class left on my paid series, and I wanted to use it up.

Everything was going well for most of the hour-long class, with a nice meditation, sun salutations to warm up, cat-cows, child’s pose (I cannot do a downward dog because of the pressure it puts on my hands and wrists, so this is a substitution per one of the instructors), and a warrior two pose. Then our instructor had us move into a triangle pose, which is essentially a twisting side bend with your legs forming two legs of the triangle, one arm down next to your forward leg and the other arm raised to the sky. It was hard, and I couldn’t hold it while she went around the room answering questions. So I stood up.

And immediately realized I had injured my lower back. I was in considerable pain, to the point where it was very uncomfortable to walk back to my car. I chose not to say anything. I just wanted to get home and lie down.

Heat, ibuprofin, Tylenol, Aspercream, you name it, I tried it. By midday Friday I decided I needed to check with my PCP, and the geriatrics team recommended getting a lower back X-ray to rule out a stress fracture. I was able to drive to the clinic and carefully walk to the radiation department. The tech was sympathetic and I got through the procedure. Supposedly, it would be reviewed within a couple of hours, but no report appeared in my electronic medical record by the end of the day.

However, by Friday evening I was able to stand for about a half hour and help prepare dinner, so that was encouraging. By Saturday morning, I was feeling more mobile, though I rested a lot that morning and later afternoon. By Sunday, I was able to do my regular set of stretching exercises and drive into Boston to have a planned lunch with a friend and see my eldest daughter.

As I write on Monday, I still have some discomfort, but am basically back to my normal mobility. And the X-ray report came back negative for a stress fracture, though there are some age-related issues with osteopenia and thinning of cartilage between spinal disks. That would explain some of the low level discomfort I’ve had for the past few years. But thank goodness it wasn’t anything more serious.

And yet. For those few days when my mobility was really hindered, I felt quite vulnerable. The experience drove home the obvious fact that a strong back is essential for everything we do. I’ve never had back problems up to now, so I’ve taken my spinal health for granted. No longer. I’m not risking yoga again, but hope to get back to Pilates, which is excellent for strengthening core muscles and back support, this fall.

Meanwhile, I’ll keep tending my back and stretching and walking, for as long as I’m able.

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: Point Normal