Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Mystery Guest

· · 4 Comments

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

· · 6 Comments

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

· · Leave a Comment

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

· · 4 Comments

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

The Eagle Has Landed

· · 2 Comments

Last Friday, as I was walking toward the Back Bay train station in Boston on a sunny afternoon, I came upon a crowd of people chatting and taking pictures with their cell phones. There on the sidewalk was a beautiful, huge, black-and-white-mottled bird—big as a wild turkey, but not—with a rectangular head, stern golden eyes, and a yellow beak with a pointed, curved tip. Wildlife in the city!

But as I reached into my coat pocket for my own phone, I noticed something odd about the scene—gray and white feathers, enough to fill a pillow, scattered everywhere. And then something else—a bloody carcass that the bird was in the process of shredding and eating. “It’s rather gruesome,” one of the paparazzi commented, “but my son will be fascinated.”

Yes, indeed. Gruesome and mesmerizing. As I later determined from my bird field guide, the predator was an immature bald eagle feasting on a pigeon in Copley Square.

And no, I did not take a picture. I felt really bad for the pigeon.

Now, for those of you who have no sympathy for pigeons and consider them flying rats or worse, hear me out. I’ve done a lot of reading about pigeons in the past few years, as they figure prominently in the World War I novel that I’ve been writing (now in third draft revisions). They are truly remarkable creatures.

For one thing, pigeons are loyal. They mate for life and live as a couple. (So do bald eagles, apparently, as well as puffins, another of my favorites.)

They come in an astounding array of colors. Even common gray pigeons have stunning iridescent, jewel-toned feathers. Just take a closer look next time you see one in the sun.

They have an extraordinary ability to find their way home, somehow sensing the Earth’s magnetic fields. That’s why pigeons have been deployed since ancient Rome to carry messages.

Which brings me to the fact that the humble pigeon has saved lives. One of the most famous was Cher Ami (Dear Friend), who delivered a vital message that led to the rescue of more than 500 American soldiers during World War I. (And no, he’s not the pigeon in my novel, but certainly an inspiration). This little pigeon survived a bullet to fly 25 miles in a half-hour and deliver his life-saving message. He was awarded the Croix de Guerre by the French for bravery. His stuffed body still resides in the Smithsonian.

The predator eagle was certainly just doing what wildlife do on that Boston sidewalk, eating its prey. And we are all certainly drawn to the unusual, unexpected spectacle, and the exercise of raw power—these days, more than ever, it seems. All too easy to ignore or discount the subtle, the nuanced, the peaceful.

As I reached the train station, I was heartened to see a score of pigeons hanging out in the sunshine by the entrance. An everyday city sight, but so calming, no crowds. Nearby, a young man kneeled with his cellphone, taking their picture.

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.

Images: Top, Patrick Brinksma; Bottom, Zac Ong