Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Random Act of Kindness

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Last Friday, in-between a routine echocardiogram and an appointment with my rheumatologist at Boston Medical Center, I decided to get a bite to eat. It was around 11:00, not quite lunchtime, but I knew I wouldn’t get home until mid-afternoon. Better to tackle the hour-long drive and run errands on a full stomach than get worn out before I could sit down at my own kitchen table.

I found a nice local diner, just a short (very cold) walk from the BMC campus, warmed up with a cup of tea that steamed my glasses, and enjoyed a hearty brunch of scrambled eggs, an English muffin and home fries. The diner was cozy and crowded. I had never been there before.

There was ample time to walk back for my second appointment when I asked the waitress for my check. A few minutes later, she returned empty-handed. “Someone paid for your meal,” she said. “You don’t owe anything.”

“How is that possible?” I asked, astonished. “I don’t know anyone here!”

She shrugged and smiled and suggested that Santa had delivered a gift. I thanked her, and sat there, marveling. There was no indication that this generous soul had paid for everyone. Why single me out? Who could it be? Fortunately, I had some cash in my wallet, so I gave my waitress a good tip. It was the least I could think of in the moment.

Walking back to BMC in bright sunlight, I pondered what had just happen. I’d heard of gestures like this, certainly, but never been the beneficiary. The cynical voice in my head wondered if it was some kind of social psychology experiment, to see how people responded to such an anonymous gift. But it didn’t really matter. Someone chose to do me a kindness. How lovely! And it gave me a real boost that lasted all weekend.

As 2019 draws to a close, a year of so much dire news, it’s uplifting to remember that there are many good people out there, who never get headlines, ushering light into the world. With Hanukkah and Christmas coinciding this week, we can use all the light we can find—and bring to others.

In that spirit, whatever your tradition, best wishes to you and yours for the holidays!

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: Gaelle Marcel

Mystery Guest

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Right before Thanksgiving one evening, while I was brushing my teeth before going to bed, I noticed an unusual beetle on the bathroom wall. It had long black-and-white antennae and was maybe just under an inch long. Red lights flashed in my head. Those antennae are a distinctive feature of the Asian Longhorned Beetle (ALB), which a few years back devastated tens of thousands of trees in my home town.

Eighteen years ago, I published a book about the demise of my city’s urban forest, and I had predicted the beetle infestation, because we have a preponderance of maple trees in our fair city, which are the ALB’s favorite food. Who was this? Could it be that a dawdling beetle (they are notoriously sluggish) had invaded my home (which would be really, really bad, because it would mean a lot of trees in our neighborhood would have to be removed to prevent further infestation)?

I ran downstairs, found a translucent plastic cup (no small glass jars or anything transparent around), grabbed some index cards and tape, and ran back upstairs. Sure enough, the beetle was still hanging out, and it barely reacted when I scooped it into the cup, then taped the index cards over the top so it couldn’t escape.

Now what? No one in the local state or federal offices that have managed the ALB infestation over the past decade would be available during the holiday weekend. I figured I’d call them the following week—except we then had a major snowstorm. I planned to keep it until I could figure out whom to call.

Meanwhile, the beetle, despite lack of food and oxygen, hung out in the sealed cup on my desk. From time to time, as I worked at my computer, it would climb up the inside of the cup. I’d watch its silhouette try to figure a way out and fall down, only to try to escape once again, like a miniature Sisyphus, condemned (by me) to endlessly repeat the same futile venture over and over. Several times when I thought it had finally died, lying so still, it would rouse after I lifted the cup to the light to see if it was still there.

I began to feel rather guilty. Who was I to trap this hapless creature, which hadn’t done anything other than wander into my bathroom at the wrong time? I didn’t want to kill it outright (although that may have been the kinder alternative), but I also didn’t want to let it go, in case it really was some kind of parasite that could destroy trees. It did not appear to have the shape of an ALB, which is chunky and has striking white spots on a black, hard shell. But what if it were an immature ALB that didn’t yet look that way?

I also began to admire it. This beetle had a lot of determination. It had an extraordinary will to survive. I finally discovered it dead in the bottom of the cup 10 days later. When I tipped out its shriveled remains, I was able to take a closer look. Comparing it to various insects that are related to the ALB,  it seemed to be a cross between a Western Conifer Seed Bug and a White Spotted Pine Sawyer. Was it a new species? A friend who heads the tree replanting effort here in the city gave me the emails of two experts to whom I could send my picture. So I did.

Hoping to hear back from them soon and solve the mystery. I’m also relieved that it doesn’t appear to be a dangerous parasite for our city’s trees. So I’m left to marvel about the will to live. Even in such a small creature, under duress, it would not give up until its body gave out. All the more so for us humans. Though I suspect, if we fail to heed the warnings of our planet’s demise, the beetles will be here long after we are gone.

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: Scott Umstattd

Yellow Roses

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On Monday, Al and I celebrated our 35th wedding anniversary. Actually, we started celebrating over the weekend, with Shabbat blessings in synagogue, a great performance of Pulitzer-nominated The Wolves on Saturday night, delicious Sunday brunch at a local bakery cafe, followed by a tour of the stunning Bauhaus historic home of Walter Gropius and family, a quick visit to special exhibits that deserve more time at the Worcester Art Museum, watching a quirky, funny Albanian film called Two Fingers Honey, and dinner at a cozy neighborhood Italian restaurant. Plus a special dinner on our actual anniversary Monday night. And we have still more plans for next weekend. Nothing like playing tourist in your own backyard with your best friend.

Indeed, we’ve now lived more than half of our lives together—which is astonishing, when I stop to think about it.

How can you really know, when you first marry, whether you’ll be able to keep your relationship fun and surprising, let alone weather all of life’s inevitable storms, and discover that your love for one another will continue to strengthen and flourish?  Honestly, you can’t. Intuition, experience, mutual attraction, a pinch of luck—all are factors, but not determinants. I just know that the first time Al showed up on my doorstep, he surprised me with a dozen yellow tea roses. No one had ever done that before. And the first time he gave me one of his big bear hugs, I felt safe and peaceful.

All these years since, through many, many challenges with health, family, jobs, and more, he’s remained that same steady source of calm, security, optimism, and wonderment. He has the most generous heart of anyone I have ever met, infinite patience for all the mishegas of my scleroderma, and an endearing curiosity and playfulness that can push me out of my comfort zone, but often for the better. Even when he drives me crazy, and I, him, we always manage to work it through and come out stronger.

We’re a lot grayer than those two young adults who smile so blissfully in our wedding portrait. It was good that we didn’t know what lay ahead, starting with the discovery, shortly after returning from our Cape Cod honeymoon, that I had a serious autoimmune disease, with scleroderma being the ultimate diagnosis three years later. All that seems ancient history, now.

The best definition I’ve ever heard of a good marriage or partnership is to be each other’s oasis. Looking back over the past 35 years, I think we’re there. Whatever comes next, I am most grateful.

P.S. This marks my 400th blog post on Living with Scleroderma. How fitting for this to be the subject! To all of you, Dear Readers, thanks for following along.

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.

First Snow

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Immersed in whiteness, once again. Our first snow of the season began Sunday night, and by Monday morning, our world was transformed by billions of fluffy flakes, cloaking secrets beneath a foot’s accumulation. More snow is on the way as I write, looking out my bay window onto yews, their evergreen branches bowed by the weight of last night’s visitation.

The house is warm. Al saved himself a gym workout by shoveling the drive, and the roads are plowed. I rescheduled Tuesday appointments in Boston to avoid an anticipated messy commute as the storm lingers along the coast. I ate oatmeal for breakfast, and there’s last night’s soup for lunch.

Snow forces the world to slow down. Arriving as it did during the Thanksgiving weekend, I know many folks were not thrilled. Our younger daughter was wise enough to return to Philadelphia on Saturday to avoid what became a nightmare of travel woes as the storm approached the Northeast. Across the country, travel conditions were abysmal.

Still, here in my own little world, I’m grateful for the change of pace. We live such hectic lives, with too many demands for attention, angst, and outrage. Snow storms have a way of forcing us to stop, recalibrate, and rethink what is truly essential. Staring at that blank, white canvas that conceals flaws and inspires such wonderment, I am grateful for the peaceful quiet.

A brilliant red cardinal perches on the yew’s bended boughs, in magnificent contrast to white and green. A black-capped chickadee, white breast puffed against the cold, hops amidst the branches, scattering snow. A tufted titmouse scrabbles on my windowsill. I’m glad our bird feeder is full.

Soon enough, life’s realities will crash through. But for this fleeting day, at least, beauty reigns in a pristine world.

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: Robert Thiemann

In a Word

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Nearly 40 years ago, when I first experienced symptoms of what I later learned was scleroderma, I found myself exhausted. There were plenty of logical explanations. I was in entrepreneurial mode, trying to launch a statewide news service for four NPR affiliates, and running myself ragged. I wasn’t sleeping well. My first marriage had just broken up, and I was struggling with a deep sense of failure. My gut was reacting to all the stress, and I was losing weight.

Fortunately, I had found a strong community in a local synagogue, and the mother of one of my friends offered to take me in and help me get back on my feet. She was a blunt woman, but she was also kind and a good cook, and after a week in her home, I began to regain my strength. And she told me this: It doesn’t take long to wear yourself down, but it takes a long time to build yourself back up again.

I have thought of those wise words many times since.

Of all the things I’m grateful for this Thanksgiving, I’m particularly grateful that in America we can express ourselves freely. But that freedom comes with profound responsibility. Words are powerful. What we say to each other and how we say it matters. It has become alarmingly clear that words can all too easily destroy what is best about our country, and it will take a long time to restore what we’ve already lost.

I hope the conversation around your dinner table is replete with all the respect and empathy so absent in our national dialogue. Each of us needs to be heard, but each needs to listen, really listen, too. That’s where true healing begins. Happy Thanksgiving.

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: Scott Webb