Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

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.

And a Good Time Was Had by All

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For years, Al has been telling me and our daughters about Woodstock. He was 18 in August of 1969 when he accepted an invitation from friends to drive from Massachusetts to Max Yasgur’s farm in Bethel Woods, N.Y., for what he thought was “some kind of arts festival.” Indeed. Amidst 400,000 others, he and his friends managed to plant their sleeping bags a third of the way up the hillside from the huge soundstage, with a great view of all the acts—except for Jimi Hendrix, because they left before he closed out the show, since they wanted to get back home and had tickets for his upcoming Boston concert. But that show was cancelled. A year later Hendrix died of a drug overdose. Al regrets the decision to leave early, to this day.

One of the acts he did see, close up, was the Saturday afternoon breakout performance by Carlos Santana and his band. So when we learned that Santana was headlining the Saturday evening fiftieth anniversary of Woodstock at Bethel Woods this past weekend, Al really, really wanted to go and share one of his fondest experiences with the three of us.

It took some convincing. I’m not a fan of huge crowds. Tickets cost nowhere near the $18 Al paid fifty years ago. (Really. He still has the ticket stub.) Affordable lodgings were hard to find. The timing was not great given other travel plans. And what if it rained? But it meant so much to my husband that I agreed. Our daughters were enthusiastically on board. I found us an Air BnB a half hour away, got tickets before everything sold out, and worked out all the logistics. And, boy, was it worth it.

The grounds at Bethel Woods Center for the Arts, now an established performance venue, are beautiful, bucolic, and immaculate. There is plenty of room to stroll around, even with a sold-out crowd. We spent the afternoon checking out the sites, walking down the hill to the spot where Al and his buddies listened to the ’69 show (this is no longer the concert area, but a well maintained lawn with the footprint of the original sound stage at the bottom), had our picture taken at the Woodstock memorial plaque (we got to the head of the line because Al was a “Woodstock Alum”), checked out some arts and crafts, snacked and stayed hydrated (it was very hot out), and listened to pre-concert performances scattered around the grounds.

Two hours before the concert was to start, we picked up our rented lawn chairs (you can’t bring your own) and waited with the crowd for the gates to open. Al found us a great spot, with an excellent view. Everyone was in a festive mood. Lots of tie-dyed outfits, flower garlands, bouncing beachballs, the scent of weed wafting in the air.

Fortunately, given uncertain weather forecasts, I’d also brought along four blue rain ponchos, which came in quite handy for several intermittent rain showers as we waited for the show to begin. I kept checking the radar on my cellphone, hoping the band of severe thunderstorms would continue to travel north of us. Which, thankfully, it did (although there were a few disconcerting bursts of thunder and lightening nearby).

The music did not disappoint. The Doobie Brothers opened for an hour-long set and got everyone on their feet, singing and dancing along to “Rockin’ Down the Highway” and other hits. Although they didn’t perform at the original Woodstock, they were certainly of the era, and can still rock with the best.

Dark skies overtook the event during intermission, but the rain wasn’t too intense and didn’t last long. Then Carlos Santana and his amazing band took the stage, and no one cared a whit about the weather. I have loved his music for years. A CD of Santana’s greatest hits, a mix of rock, blues, jazz, and Latin rhythms, was my antidote to stressful days when I was working in Boston years ago, and would ease my soul and rush-hour commute home on many an occasion.

The man is 72 years old, one of the finest rock guitarists in the world, and living proof that age does not define us. His wife, Cindy Blackman Santana, was featured on percussion, and is equally extraordinary. The band played for more than two hours straight, and we danced—ponchos on, ponchos off—through most of the show. It ended with everyone singing and swaying arm-in-arm to Santana’s version of a ’60s anthem, “Get Together” by the Youngbloods—still as relevant all these years later. The moon emerged from behind clouds. Fireworks closed out the night. We had a spectacular time together. Al said it far exceeded his expectations.

And what, you may ask, does this have to do with living with scleroderma? It’s about living, folks. As is my way, I stressed too much about stuff that never happened, which drove me to plan appropriately for stuff that did happen (rain, getting a good parking space, avoiding after-show traffic). I didn’t get enough sleep. But the show was fantastic, I slept very soundly Sunday night, and I’m so glad I let Al talk me into going. And yes, I thanked him.

Here’s to what’s left of summer, for those of you in the Northern Hemisphere—or the end of winter, for those down under. I’m taking my annual summer break for a few weeks, and will be back in mid-September. I hope you can make your own great memories. Carpe diem.

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 Flamboyance of Flamingos

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This one is just silly. Because we all need some silliness these days.

I’ve been watching the birds at our feeder, a favorite meditation. The feeder looks like a globe cage (to keep out the squirrels) hanging from a pole attached to a maple in our backyard. We hadn’t filled the feeder in some time, because chipmunks had figured out how to climb the pole, slip into the feeder, and steal all the food. So far, they haven’t rediscovered it, although at least one squirrel has now learned how to climb the pole, jump onto the feeder, and swing it wildly so food dumps on the ground. Clever critters.

But back to the birds. Sparrows have taken over the feeder. They travel in gangs, which reminded me of all the wonderful words for groups of animals. There are the familiar terms—a pride of lions, a school of fish—but bird flock terminology is the best.

Take, for example, a quarrel of sparrows. So appropriate, considering how much they chatter and cheap.

Here are some other favorites:

  • a parliament of owls
  • a peep of chickens
  • a charm of hummingbirds
  • an asylum of loons
  • a palette of painted buntings
  • a Vatican of cardinals
  • and, best of all, a flamboyance of flamingos

Which got me to thinking . . . what if we had similar descriptors for professions, such as:

  • a vault of bankers
  • a drill of dentists
  • a hose of firefighters
  • a pontification of politicians
  • a diagnosis of doctors

Which then led me to specialists . . .

  • a pulse of cardiologists
  • a rash of dermatologists
  • a pod of orthopedists
  • an inflammation of rheumatologists
  • a stream of nephrologists

Which brings me to all of us who deal with specialists all the time. How about this?

  • a persistence of patients

Happy July.

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: v2osk

Swelter Skelter

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It takes a lot for me to sweat. I rarely get that overheated, since my body revels in warm weather, even hot. But humidity is another matter altogether.

July 4th weekend here in Central Massachusetts, the air was thick. The sweat was literally pouring down my face. That sensation is so rare for me, I was surprised. I had an annoying cough, too, so I wondered if that had something to do with it. Was it the air quality or a cold that was irritating my lungs? Why was I sweating so much?

The TV meteorologist had a simple answer: The humidity was so bad, it was “disgusting.” Agreed.

Disgusting enough for me to turn on our heat pumps, which double as dehumidifiers and A/C when it gets really bad. I hate A/C, because it inevitably makes my extremities numb, and avoid it at all costs, but I was perspiring so much that I finally caved. After a few hours, the house was bearable. By Saturday evening, thunderstorms had rolled through and taken care of the rest. Sunday, the weather was a blessing, and we opened the windows again.

On Monday, as I write, I’m back to my usual summer gear, a sweater over light clothes. I can sit at my computer and regulate the temperature in my home office to my precise needs. Outside, it’s in the high ’70s, sunny and dry. No need for anything but window screens and fresh air.

Now there’s mounting evidence that some of my aversion to air conditioning has nothing to do with scleroderma and Raynaud’s, and everything to do with gender.

According to a recent study, researchers at the University of Southern California and the WZB Berlin Social Science Center found that women perform better on verbal and math skills tests as the temperature rises. Women college students in Berlin improved test scores by 1.76 percent for every Celsius degree increase. And when indoor temperatures were raised from the 60s to 70s (Fahrenheit), their math test scores increased by 15 percent.

Any woman who has struggled to function in a frigid office space during the summer, wrapped in heavy sweaters or even winter coats, with a space heater under her desk, because the A/C is cranked to near refrigerator temperatures, recognizes the truth in this finding. (If this sounds all too familiar, feel free to cite this study to the Powers That Be. Here’s the full report.) I used to suffer in an office like that, and one of the great joys of working for myself is that I no longer have to put up with such energy-sucking practices.

So, I’m grateful to have an option when the humidity and heat overwhelm even me. But I’m also glad that I’m the one who gets to regulate the thermostat.

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: Vitor Pinto