Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Summer’s End

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Here in New England, it’s officially fall. Time, alas, to let go of my favorite season. But we’ve been blessed with summer weather these past few days, a parting gift. Al and I took advantage of the 80s temps and sunny skies to enjoy a long afternoon hike on the Central Massachusetts Rail Trail.

It was a fitting way to savor the season’s end—as well as a meaningful way to appreciate the beauty in our own backyard, especially on a weekend marked by worldwide demonstrations to protest inaction on climate change and the deeply disquieting news that a third of North America’s birds have vanished since 1970, due to loss of habitat, declining insect populations, pesticides, and predators (read, cats).

The Rail Trail includes the ruins of a former woolen factory, its tumbled stone foundations enveloped by encroaching forest. A rusted turbine sits in a sun dappled clearing like an abandoned sculpture. The remaining wall of a dam presides over goldenrod. Nature has its ways, both subtle and severe, of reminding us that it will always have the last word. It’s long past time that we start listening, hard.

Please walk with me . . .

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.

One Small Step

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I’ve written a number of posts over the years about decluttering—my office, my home, my head. But this past Sunday, I actually did something about it. I Marie Kondoed my closet.

For those who may not have heard of the cultural phenom, Marie Kondo, she is the bestselling author of The Life-changing Magic of Tidying Up and star of a Netflix series, in which she helps people with far too much stuff to pare down to what they really love and need. There are plenty of memes and jokes and cynicism about her key question for each item, “Does it spark joy?” But after my younger daughter encouraged me to watch her show, it only took a few episodes to convince me that Marie Kondo is onto something simple and seemingly obvious, but profound when you put it into practice. When you clear out the clutter, you make room in your mind and life for what truly matters. That, and those of us living in the richest country in the world have far more stuff than we will ever really need in our lifetimes.

It took me about three hours to go through all my clothes. Kondo’s method is to pile everything on your bed and assess it piece by piece. Keep what gives your pleasure and give away the rest, with appreciation for the role it played in your life. Some of the decisions were easy. There were clothes I haven’t touched in years taking up space; clothes that no longer fit; and clothes that I really didn’t like but had kept because they might come in handy some day.

There were also clothes that I really love, and kept. And there were some items, particularly some of my warmer winter clothes, that I’m a bit tired of but can’t afford to replace quite yet, so I hung onto them out of pragmatism. The best finds were two timeless evening dresses that I had worn for each of my daughter’s bat mitzvah celebrations—that still fit. This was quite the miracle, especially because I love those dresses, not only for their style, but also for the memories.

Then there were the shoes. I ended up bagging about a dozen pairs, acquired over the years. Shoe shopping is always a struggle, not only to find the right fit in the store, but also to find shoes that won’t trigger the neuropathy in my feet, due to thinned fat pads from scleroderma. This is an attribute that I can only determine after wearing the shoes for a while, and since most stores only let you try them out around the house, I can’t always assess them until I wear them outside. If they don’t work out, it’s too late. Someone will benefit from my mistakes.

In the end, I brought six garbage bags of clothes to Goodwill, plus a shopping bag full of hangers. It felt good. I gave away some nice things that I hope many someones out there will enjoy. My closet is organized, and I don’t have to struggle to pull a hanger from an overcrowded rod, or dig through piles of unworn sweaters on the shelf. I can see everything, and everything is in its place. It looks pretty, inviting.

Best of all, I feel like I’ve made room in my brain. It’s an aaahhh sensation, like there’s more space to breathe. Less clutter means clearer focus.

Now, it’s time to tackle my office.

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.

View from the Acropolis

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Two days ago, I awoke at five to the sound of roosters crowing. It was our last day of vacation in Greece, at our last destination, the isle of Hydra (the ‘h’ is silent), and time to finish packing before our early morning ferry back to Athens. We had made a grand tour over two weeks, starting in the nation’s capital, then on to the island of Crete, then north to Thessaloniki, back down the peninsula to Delphi, landing on this Aegean jewel for our final weekend.

Neither Al nor I had ever been to Greece. I’d always wanted to see the Parthenon, the ruins of the ancient temple to the goddess Athena, atop the Acropolis of Athens. More than that, though, now seemed the appropriate time to visit the birthplace of democracy. With so much at stake here and abroad, I needed perspective and inspiration.

We found both. As one of our tour guides explained, democracy only succeeds when everyone participates. When citizens choose not to vote, not to be invested in the business of government, that is when demagogues step in to fill the vacuum. In fact, the ancient Greeks had a word for people who preferred not to be involved in public affairs: the transliteration is idiotes, which is the etymological root of idiot.

Make of that what you will. For me, walking through ancient ruins, contemplating the great civilizations that have come and gone, it became clear as the crystal turquoise waters of this stunningly beautiful country that we can’t take anything for granted. It’s up to each and every one of us to ensure that our democracy survives and thrives in these very challenging times.

Here are a few of my favorite images from our travels. 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.

A Sliver of Moon

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Saturday night, we were sitting with friends by a fire pit, near a pond, watching the flames, watching a sliver of moon sink beyond the trees. The same moon sinking beyond the horizon, two hours later, in El Paso. The same moon that would be absent from the sky, early Sunday morning, in Dayton.

In the U.S., in 2019, so far, there have been 255 verified mass shootings. Nearly 8,800 people have died from guns. That total just increased by 31 souls.

There’s a lot I can do to increase my odds of living a long life with scleroderma. I’ve managed it for nearly four decades, now. Some of my resilience is genetic. I’m fortunate to have access to quality health care. But I’m also vigilant and diligent about making healthy choices.

None of us can control whether an active shooter with a semiautomatic weapon of war decides to show up at a Walmart, or a bar—or a school, a church, a mosque, a synagogue, a movie theatre, a festival—and spray the crowd with deadly fire. But we can make our voices heard. And we can vote to end this madness.

The Earth turns, unceasing, on its axis. Nothing in life ever remains the same. We cannot control the world around us, only our response.

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: Terry Richmond

Implanted

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Three-and-a-half months have passed since my latest resorbed molar was extracted, and Monday was the big day for the next step: drilling a hole in my healed jaw and screwing in the implant. When I had my checkup with my periodontist two weeks ago and he proclaimed me ready, his receptionist joked, “Want to come back this afternoon?” Most certainly, not.

I did my best not to dwell on the pending procedure. On Sunday, we got to the beach once again, this time on Boston’s North Shore, for a beautiful afternoon of perfect sunshine, light sea breeze, and warm enough water for me to wade up to my waist several times. Just the right distraction.

I busied myself with writing Monday morning, but as the hour grew near to go, I briefly imagined just staying home and not being my normal Do Bee self. The Do Bee won out. On the 45-minute drive to my periodontist, at least the WGBH radio hosts were talking about something amusing: what listeners watch on TV to ease the stress of the daily news cycle. (Marie Kondo was a favorite.)

Then came waiting for the procedure to start. When I’m anticipating dental work, I really have to force myself to stay in the moment and not get overwhelmed. Sitting in the reclining dental chair, covered by paper drapes, I studied the art on the wall (an interesting abstract painting, not your typical bland office art), the plastic wrapping around the overhead exam light’s handles (why does it need extra covering when they’re wearing gloves, anyway?), and contemplated how much plastic waste that medical providers generate in the interest of sterility. (Literally, tons. According the Journal of the American Medical Association, health care facilities are the second largest generators of waste in the U.S., producing 4 billion tons annually. That’s a lot of disposables, including a lot of plastic.)

Fortunately, my periodontist and I enjoy similar music during these procedures, which are strenuous for both of us. As he injected local anesthetic into my gums, I focused on Vivaldi. This was especially helpful as he prepared my jaw for the implant, which involved a lot of scraping and pressure and pulling my tight mouth into very uncomfortable distortions. The selection was Vivaldi’s Violin Concerto in A Minor, which I played years ago in high school, and I could still remember some of the bowing.

Then came the drilling. This drowned out all the music, causing my entire skull to vibrate. The hardest part was getting the drill and suction and other tools into my mouth. But he managed, thank goodness, and the worst was over in about twenty (long) minutes. Screwing in the implant took some manipulation, but at least I could rest my mouth in-between the different steps. As he’d predicted, we were finished in under an hour. Definitely easier than the extraction, which took twice as long. He was pleased with the result, and I finally relaxed.

After a 45-minute drive, plus waiting at the pharmacy for antibiotics (always a necessary precaution for me), it was a relief to get home. Another three months of healing and trying not to chew on the right side of my jaw, and then it will be time for my dentist to put in the crown. Much as I dread this procedure, I’m glad I took care of it sooner than later. Being a Do Bee—on my own behalf— paid off. (And for those of you who remember Romper Room, here’s the official Do Bee song.)

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: Jenna Lee