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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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resilience

Bounce-back

Evelyn Herwitz · January 16, 2024 · 4 Comments

As I write on Monday afternoon, the shadows of our yews dance on the window blinds of my home office. It’s a marvel, how they’ve bounced back—literally—from last week’s heavy, wet snow. Seven days ago, their evergreen boughs bowed low. Today, they reach again to the sun, trembling in a light breeze.

It’s cold outside, in the teens when I woke up this morning. Not as cold as one friend reports on FaceBook from her home in Montana, where Arctic temperatures hover well below zero. That, I could not tolerate, literally. This cold blast I can live with, at least temporarily. And there is my annual source of relief in mid-January: daylight is already becoming noticeably longer.

Often, these days, I think about how the only thing that is real is what is happening right now, in the moment. One day, we were digging out from more than a foot of snow. A few days later, the sun is bright and our hardy New England evergreens have recovered. A lesson in resilience.

Yews have evolved over millennia to grow springy boughs that aren’t broken by heavy snow. For us humans, resilience must be learned. Whether in response to chronic disease or dark news or whatever else is weighing on our hearts, resilience requires cultivation, attentiveness, experience. It takes practice. It takes patience. It takes living in the present and maintaining a long perspective.

But it is not a passive posture. If there is anything I’ve learned from living with scleroderma for more than 40 years, it’s that resilience also requires a willingness to face the present with a clear understanding of what is happening, what’s at stake, and how best to respond. For me, resilience is also a matter of faith and of trusting my intuition when facts and answers are murky.

That is not to say that I always feel resilient. I have to work at it, every day. There is much in this world that weighs heavily on my heart. All the more reason to sit back at my desk and study the pattern of dancing yew boughs on my window blinds on a cold and sunny Monday afternoon.

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, Mind, Sight Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Snow Day

Evelyn Herwitz · January 9, 2024 · Leave a Comment

On Sunday we had our first big snow of the season, 15.5 inches, officially. Thankfully, the power stayed on despite the heavy, wet snow, although the pole that holds our bird feeder snapped under the weight. Al shoveled our drive and walkway three times, more than earning a good night’s sleep. I clomped through deep snow in our backyard to rescue the feeder and hang it by the back deck, so the birds could still find some food in the storm. Inside, our home stayed warm and cozy, as the world around us slowed down.

I always love this kind of snow, early in winter, before it turns grubby and sloppy and monotonous. The transformation is stunning. Snow outlines lacy tree branches, drags down evergreen boughs, and covers roofs like thick layers of buttercream frosting. Side roads stay white, even after plowing, with high borders lining both sides. Only a few cars venture out, and no planes drone overhead. Quiet reigns.

On Monday afternoon, I bundled up in a long sweater under my down coat, snow boots, wool hat, warm mittens, and sunglasses, and set out to see how the neighborhood had changed.

School was canceled to give the city time to clean up after the weekend storm, but I only saw one dad pulling two of his kids on a red plastic sled, while the other two walked alongside. One of the kids on the sled, his cheeks bright pink, licked a huge ball of snow. I used to love that wintry treat, too, when I his age. Also making snowmen, but so far, none to be seen.

Elsewhere, a few neighbors were shoveling their drives or brushing off cars. Most folks had, like Al, done the main clearing on Sunday. You could tell who had snow blowers by the wide paths along sidewalks that were already melted down to pavement. An icicle shattered on someone’s front steps. Dollops of snow, like whipped cream, clung to branches. Snow covered half of a neighbor’s roof, while the other half had melted to reveal an array of black solar panels.

Aside from enjoying the scenery, the best part of my walk was savoring the moist air that eased my winter-indoors-too-dry nose and eyes, and the fact that it was warm enough to walk with my mittened hands outside my pockets for the whole mile-and-a-quarter route. The air smelled fresh and clean. My head was much clearer when I got home. As I wrote this post, I could hear a red-tailed hawk calling somewhere nearby.

All of this will wash away by mid-week, in another storm, but rain this time. So, here’s to living in the present moment and enjoying all the beauty that surrounds us, each day. You only have to look to find it.

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, exercise, hands, mindfulness, resilience

Enter 2024

Evelyn Herwitz · January 2, 2024 · Leave a Comment

And here we are, one day into 2024. In the run-up to the annual turning of the calendar, I’ve felt inundated by post-Christmas sales pitches, last-ditch fund raising appeals, year-end trend stories, distressing headlines, and dire predictions about the year to come.

Time for a deep, cleansing breath.

Trying to take stock of 2023, I read through my bullet journals, where I keep track of all my goals, fiction writing, client projects, volunteer activities, travel plans, medical exams, and everything else that I’m trying to manage, and I reached one big conclusion: I want to juggle less and focus more.

I’m not sure how to get there, yet. But I know it’s essential to my mental health and well-being. Much as I enjoy the various projects and activities that fill my days, I’m pulling myself in too many directions. Somehow, I need to simplify, so I can give more time and attention to what really matters. Major challenges lie ahead this year. Focus is essential.

So, that’s my big New Year’s Resolution for 2024. Wish me luck.

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: Pascal Debrunner

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

Through Rain and Gloom

Evelyn Herwitz · December 19, 2023 · 2 Comments

It’s another one of those weeks when I have a cluster of medical appointments. And they involve a lot of driving. Monday dawned with a deluge of rain, which made the prospect of driving into Boston yesterday morning all the more delightful. Wednesday, the next double appointment day, will at least be sunny.

Both ways yesterday, the driving was intense. Visibility in the worst of the Nor’easter downpour (at least without snow, thank goodness) was about ten car-lengths. And, of course, there were some geniuses on the Mass Pike who chose to ignore all the electronic signs that observed that “wipers on means headlights on” and oh, by the way, this is the law.

The one big blessing in all this was that traffic was not nearly as heavy as usual, perhaps because people are taking off for the holidays ahead of time, or because they were smart enough to stay home. Despite all the rain, I was able to make the drive in a little over an hour, even driving below the speed limit.

I could have canceled and stayed home. But appointments are hard to come by, there’s never a convenient time, and I didn’t want to wait another few months to reschedule.

Most importantly, it was good to have my dental check-up and learn that my teeth have not resorbed more. It was also good to see my wonderful cardiologist, who gave me an A+ on my ECG and said my Type II pulmonary hypertension seems to be well-c0ntrolled with my current medication. There’s no cure for it, but I’m holding steady. And I need to exercise more. I know, I know. I will try to do better.

I was tired when I got home, but I made it safely and got the reassurances I needed that all is well, all things considered. Worth driving in a deluge.

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: Jessica Knowlden

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

600

Evelyn Herwitz · December 12, 2023 · 8 Comments

There’s something to be said for persistence. Or maybe just a well-honed habit. Whatever the reason, this is my 600th post on Living With Scleroderma. As of January, I will have been writing this blog for 12 years.

My body has aged and changed since that first post. Most notably, my hands required serious revision surgeries in 2017 and a long recovery. I developed Type II Pulmonary Hypertension in recent years (though I probably have had it, undiagnosed, for much longer). My mind is not as supple as it was when I started this project. My eyes require considerable tending for Sjogren’s dryness. I drop stuff too often. I need more sleep to function. And my hair is certainly grayer. Regardless, the fact that I remain healthy enough to keep writing is a profound blessing.

Here’s what I value about this blog: By giving voice to my experiences with this complex disease, I’ve become much more grounded. I no longer feel embarrassed when someone asks about my odd looking hands or stares at them. I no longer shy from talking about scleroderma with others. I no longer feel ashamed or awkward about it.

The other piece that I value highly: Hearing from you, Dear Reader, and how my weekly musings have helped you in your own life, with or without this disease. That’s the real reason I keep writing.

And so, my best wishes to you and yours for good health and joy this holiday season. That’s something we all need in the coming year. 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.

Image: Daniel Lloyd Blunk-Fernández

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, hand surgery, hands, managing chronic disease, 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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Recent Posts

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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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