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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Hearing

Sugarplums

Evelyn Herwitz · January 21, 2020 · Leave a Comment

As I write on Monday morning, snow melts off the roof of my home office, tap-tapping on the sill below. The droplets catch the sun, like streaks of liquid gold. Yew boughs glitter and sway in the light breeze.

Still, it’s quite cold outside, with highs today only in the low ’20s. I’m glad for my renewed gym membership, knowing I can walk and ride the bike despite the frigid air. (And, yes, I hit my goal last week of three workouts!)

Memories come in odd flashes. As I was getting dressed, trying to figure out how many layers I needed, I suddenly recalled a particularly cold day in the second grade. Back then, freezing temps would not have stopped our teachers from sending us outside for recess. As long as the sun was shining, we were on the playground, tossing rocks for hop-scotch, twirling jump ropes, climbing the jungle gym, swinging on swings, playing dodge ball.

But on this particularly cold day, a few friends and I were complaining to the recess monitor, a woman with a dark-brown, Jackie-Kennedy-style coif, scarlet lipstick, and a kind disposition, about the fact that we didn’t want to be outside. She was our favorite monitor, possibly one of the moms, though I don’t recall. “You’re just a bunch of sugarplums,” she teased. “It’s a beautiful, sunny day!”

Our seven-year-old response was to link arms and march around, chanting, “It’s cold, it’s freezing, it’s terrible! It’s cold, it’s freezing, it’s terrible!” She laughed, and we did, too. At some point that seemed like forever (probably after a mere 20 minutes), the bell rang and we gratefully retreated to the warmth of our classroom.

I am, still, indeed, hypersensitive to the cold—though not due to any (implied) weakness of strength or character. Remembering that day, I have to smile, but I’m glad that, in our own childish way, we stood up for ourselves. (Back then, girls had to wear skirts and dresses to school, so our legs were pretty darn cold.)

At the same time, our recess monitor made an important point. Focusing on the negative wasn’t going to help us one bit to stay warm. Running around would have been a better idea, soaking up the sun and generating our own heat. Linking arms, our improvised solution, helped, too.

Some 59 years later, those lessons still shimmer in my mind. Focusing on the negative, overwhelming as the challenges may seem, won’t get us anywhere. Standing up for our truths matters. Linking arms helps.

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: Nine Köpfer

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, managing chronic disease, Raynaud's, resilience

Cup of Kindness

Evelyn Herwitz · December 31, 2019 · Leave a Comment

Last week I said farewell to my long-time rheumatologist at Boston Medical Center. Dr. Robert Simms has been my trusted scleroderma expert for 22 years. He’s moving on to semi-retirement in New Hampshire, and I wish him only the best. But I will miss him.

We first met when I participated in a BMC research study on treatments for Raynaud’s. The project was directed by the late Dr. Joseph Korn, who founded BMC’s scleroderma program in 1993. I ended up in the control group, so I did not directly benefit from the study. But I did gain a fledgling relationship with Dr. Simms, who was also involved in the research. Soon, he became my go-to specialist for managing chronic infections in my digital ulcers, and, eventually, my primary rheumatologist.

I also gained some confidence from driving into Boston for my monthly research study check-ins. Up to that point, the idea of an hour’s commute from home seemed like a major undertaking, not to mention the terrible (deservedly so) reputation of Boston drivers and traffic. But after a few trips, I realized I could actually manage it quite well. That aha moment led to my realizing I could commute to Boston for a job, and my eventual dozen-plus-years stint as a marketing and communications director at a small Boston-area college.

I surely have not missed the daily commute for the past decade since I left the college, but I’ve continued to drive into Boston (or take the train, when possible), for a variety of commitments, including my regular, 4-month check-ins with Dr. Simms. Whenever we’d meet, he would always take whatever time I needed to fully discuss any issues, as well as to catch up on life. A leading scleroderma researcher, he gave thoughtful, conservative advice. His referrals to other BMC specialists who also understood this complex disease were consistently excellent. I’ve been blessed to be in very good hands.

I trust that will continue to be the case. He introduced me to his protege, who has been with BMC’s scleroderma program for the past seven years, is deeply immersed in research and care for those of us with this complex disease, and seems equally personable, as well. Relationships, especially with even the best physicians, take time to build mutual trust. I’ve grown older with many of my specialists, baby boomers all. So, I’m that much more grateful that I didn’t have to lift a finger to make a smooth transition with such a key member of my medical team.

As we celebrate the arrival of 2020 at midnight tonight, many around the world will join with friends to sing Auld Lang Syne. The phrase literally means “old long since”—or, for old time’s sake. This New Year’s, I’ll drink a cup of kindness to you, Dr. Simms. Thank you for everything.

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: Ben Wilkins

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, managing chronic disease, Raynaud's, resilience

Random Act of Kindness

Evelyn Herwitz · December 24, 2019 · 2 Comments

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

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste Tagged With: managing chronic disease, mindfulness, resilience

Yellow Roses

Evelyn Herwitz · December 10, 2019 · 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, travel

First Snow

Evelyn Herwitz · December 3, 2019 · 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

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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