Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Coping Mechanisms

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I hope this post finds you and your loved ones safe and well.

I’m grateful to report that the only inconvenience I’m experiencing at present is damp, chilly weather that has kept me from taking a walk over the weekend. This should be my greatest problem in a pandemic.

It even hailed for about ten minutes on Sunday night, pea- to marble-sized chunks of ice that flung out of the sky, hammering our kitchen skylights and bouncing on our deck. As a trained weather spotter, I dutifully reported in to the National Weather Service office in Taunton, Mass., and the guy who answered could even hear the racket over the phone.

Nature has been teaching us a lot of hard lessons lately about unpredictability, risk, and our precious, fragile lives. When I wake up in the morning and take a deep breath, I’m grateful that my lungs fill easily, painlessly; that my temperature is normal; that Al here at home and my adult daughters in their respective cities are all well.

But sleep does not always come easily or consistently. I woke too early Monday morning from some kind of dream about COVID-19, wondering why Prince Harry and Meghan would move to LA right now. Doesn’t Canada have a better health care system? (Of course, with their wealth, health care costs are not an issue.) Just one measure of how too much news is penetrating my brain.

So I have been trying to figure out a way to cope with this pandemic and fears about my family’s health, for the long haul. I cannot keep riding the anxiety roller coaster, one day feeling calm and absorbed in my work or other activities, the next, waking up to remember we’re still stuck in this unfolding horror story and imagining the worst.

It’s simply not good for my health. When I first developed scleroderma more than 35 years ago, I was coming off a divorce, anxious and stressed and depressed, pumping far too much adrenaline into my system for too long. I have no proof, but I believe that months of fight-or-flight response triggered the onset of my disease. Research indicates that my hunch is a good one.

So, here’s where I’m at, as the pandemic continues its inexorable spread:

I have a great writer’s imagination. It is not helping me right now. I have to trust that I will be able to deal with whatever COVID-19 dishes up for me and my family as best I can. I can’t anticipate it, because there is no way to know what may or may not happen. I’ve done my due diligence research about local resources and what first steps to take if one of us gets sick. I’m following our city’s response team briefings, as well as our governor’s, and reliable media resources. I listen to Dr. Fauci and am very grateful for his presence.

I need to go on a COVID-19 news/social media diet and restrict my reading, watching, and listening to certain times and time limits during the day. Still struggling with that one, but I find myself adjusting to the awareness that the numbers are just going to keep going up for a while. I can’t change the reality of our present crisis. I can only do my part to follow the public health guidelines. So staying informed is important, but the value-added of each additional report about the latest scary detail is not adding to my understanding or well being.

Meditation really helps me to calm down. So does writing. So does listening to my favorite music. So does visiting online with family and friends, or writing longer emails to people I haven’t seen in a while, or calling on the phone. Walks are a necessity, as long as the weather permits.

When I have time in the evenings, I’m removing old childhood photos from Herwitz family albums to be digitized, and musing about how little we know about how life will turn out. One of my favorites is a portrait my father took of me and my mother when I was about 15 months old. I’m staring into the camera with an annoyed glare, probably tired of the photo shoot, as my mother holds me in her lap. There’s a bandage on her finger from where I had bitten her—a story she loved to tell, to rib me.

I’m usually smiling in most of those childhood images. But in that one photo, there’s a feisty determination in my eyes that gives me encouragement. It’s a quality that has served me well in learning to live with scleroderma—with an emphasis on live. It’s as if I’m telling myself, across the decades, that I and my loved ones will find our way through this, too.

God-willing, we all will. Stay home, stay safe, and keep washing those hands.

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.

The New World Order

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It’s Monday afternoon, and I’m watching huge, fluffy snowflakes fluttering to earth outside my window. They land gently, without a sound, the perfect antidote to the frightening headlines on my news apps and comments in my Twitter feed.

I should stop reading it all, I know. But I feel compelled to keep up with the latest COVID-19 developments. It’s like we’re all trapped in this horror movie, but we can’t close our eyes. We need to know how it ends. And we can’t leave the theatre.

I find solace in meditation, my writing, helping my clients to communicate their efforts in response to the pandemic, connecting with family and friends, studying for my German classes (now online), watching videos of people in Italy making music from their balconies.

And I’m finding workarounds to being mostly home bound. Last Friday, instead of driving into Boston for a long-awaited first appointment with my new rheumatologist at Boston Medical Center, I made an arrangement with him via MyChart messages to speak by phone. The Rheumatology Department is in process of switching over to telemedicine, but not there quite yet.

He was very generous with his time. We spoke for 40 minutes about a wide range of my concerns, not only my health status, but also about social distancing and risks of the virus for other family members. As for me, he said my age is a greater risk factor than my scleroderma. This varies, of course, for each individual, but in my case, my lung involvement has remained a lesser issue, thank goodness.

Earlier last week, my hand surgeon’s office checked in about my upcoming procedure to remove a bothersome calcium deposit from my right thumb. We agreed to postpone until June, earliest. I’ve been living with this annoyance for at least a year. No point in doing it now, even in an outpatient surgical center, as planned.

Sleep does not always come easily. It seems that I get a good night’s rest every other night. It’s hard to turn off the worries about what the future holds. But at least I’m not driving anywhere long distance right now, which is riskier when I’m fatigued.

Instead, I’m trying to walk outside as often as I can. Over the weekend, I took a long walk to our city’s oldest park, to clear my mind and get some exercise. It was crisp and sunny. On any normal weekend afternoon, with such good weather, the park’s playground would have been crowded with kids and parents. Instead, only one couple with a small child played briefly on a swinging saucer. Traffic was light. A handful of people walked or jogged around the park’s narrow pond, some alone, some in pairs. We passed each other with a smiled greeting and six feet of separation.

As I rested on a bench, a squirrel bounded across the grass. In all the years I’ve been observing squirrels, I don’t think I ever noticed that they jump instead of walk from place to place. Instead of being wrapped up in my head, I had slowed down my mind enough to simply pay attention. A good thing.

A guided meditation I was listening to this morning noted how important it is to see and acknowledge all the little things in life that are going right, right in front of us. It is so easy to get sucked into the terrifying vortex of COVID-19, the news of exponentially mounting cases, the sudden deaths of loved ones, the exasperating muddle of federal leadership. While it’s essential to be alert and informed by reliable sources, too much information doesn’t help me cope.

So right now, I’m just going to watch the snow fall.

Be well.

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.

Chopper Talk

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It is most delightful to have my molar back. As in my back right lower jaw, which has been missing that tooth since last April, when a painful, resorbing root sent me to my periodontist for an extraction. No fun, that. Nor has it been a treat to eat with a large gap in my teeth in the grinding department. I’ve had to be extra careful for months to thoroughly chew my food, mostly on the left side, to be sure I can actually swallow safely.

Ah, the joys of scleroderma dental problems. And esophageal dysmotility.

But my new post and crown, inserted on Monday, fits perfectly. It’s an odd feeling. What is that thing in my mouth? Oh, it’s a molar! No longer can my tongue wander into the gap for a little exercise. No longer must I consider whether to mush food with my lower gum on the right or chew on the left. No longer does my right cheek sink in ever-so-slightly over my missing tooth.

Fitting the crown and inserting it proved to be the usual challenge in my tight mouth. A month ago, I had to help the dentist and his assistant insert the molds for my upper and lower jaw, because it was easier for me to figure out the right angle than for them to try without stretching my lips to intolerable tension. Yesterday, it took more lip contortions and some deep breathing on my part as my dentist screwed in the post for the crown—not easy for either of us. But it’s done, and it feels amazing.

Turns out, my dentist told me, he had just needed an extraction himself of one of his front teeth. He has a partial, temporary bridge, so you can’t tell, while he traverses the long process of implants and replacement. I found this encouraging, not only because he uses the same periodontist that he’s sent me to (definitely a good referral), but also because one of the next teeth I may lose due to scleroderma resorption is also a near-front tooth. We’ve been monitoring it for years.

Hopefully, it will continue to take its time. But it’s reassuring to know that, whenever the inevitable comes, I won’t have to look like Alfred E. Newman for months until the procedure is complete. Meanwhile, I will enjoy having a full set of choppers. Carpe diem—or should I say, carpe dente? Maybe not. I don’t want anyone seizing any more of my teeth for as long as I possibly can.

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: Stefan Steinbauer

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

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.