Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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What Comes Next, Comes Next

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The election is over. It is not the result I had hoped for. For now, I am just trying to keep my head on straight and focus on what’s in front of me.

And so, I took a walk Sunday afternoon, in the sharp, unflinching November light that reveals each detail of bark and lichen and crumbled leaf. A friend had mentioned a lake not far away that you can circumnavigate via a pontoon bridge that connects to a woodland trail. The weather was pleasant, not too cool, not too hot. And I needed to clear my head.

It took me about 45 minutes to walk the full route. Water gurgled as it lapped the pontoon bridge, a popular attraction for families pushing strollers. A gaggle of teen boys asked me to take their photo against a backdrop of sun-illumined lake. Children ran ahead of their parents, delighting in the novelty of walking across water. Others whined until they were picked up and carried by moms, “just for a little while.”  The woodland walk was less traveled, peaceful, more conducive to sifting and sorting my emotions.

What struck me most, however, along the whole route, was the number of different languages I overheard. That, and the friendly greetings of strangers. Whatever the outcome of this election, we are a big-hearted country made up of people from all over the world who call America home. Many of us, myself included, are children of immigrants and, yes, refugees. Whatever happens, we must remember that. Our diversity, our generosity, our kindness—these are our true strengths.

Here are some photos. Hope you 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.

Take a Deep Breath

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As we head into next week’s election, I’m reminding myself to breathe. Just breathe.

And the way to breathe matters. A couple of years ago, I discovered an important lesson: If you breathe from your chest when you are stressed, it triggers your fight-or-flight response, an adrenaline rush, and fuels anxiety. If you breathe from your diaphragm, it cancels out the fight-or-flight anxiety reaction and calms you down. It really works. Here’s an explanation from the Cleveland Clinic, which is an excellent source of vetted medical information.

Simple? Yes. Why it took me until I was in my late ’60s to learn this? No clue. This practice is central to meditation, which I also find helpful. But I didn’t know how the chest breathing really exacerbates stress until I was untangling the very uncomfortable sensations of what turned out to be Type II Pulmonary Hypertension, a late stage complication of scleroderma.

So, I pass this lesson along to you, Dear Reader. I hope you find it helpful as you confront your own worst fears and stresses.

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.

Image: Harli Marten

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