Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Bounce-back

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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.

Snow Day

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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.

Through Rain and Gloom

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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

The Power of Art to Heal

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It’s been one of those stretches when all of my medical appointments jammed together. Since last Thursday, I’ve had one tele-med plus two in-person appointments at Boston Medical. Thank goodness for remote visits, or I would have had to drive into Boston to the same place on three different days instead of “just” two.

Even so, I am grateful for the excellent medical care I receive. I was reminded of this all the more while recently watching a new documentary, Angel Applicant, by filmmaker Ken August Meyer.

Meyer lives with diffuse scleroderma, the most aggressive form, and he tells of how he found comfort and insight into his experience from the art of Paul Klee, who died of complications from the disease in 1940, seven years after being exiled from Nazi Germany to Bern, Switzerland. Klee is a favorite of mine, too, for his luminous paintings, as well as for my sense of kinship with him as an artist who created some of his best works during the three years that he wrestled with systemic sclerosis.

Meyer’s film is the most meaningful, poignant, and true story of what it means to live with scleroderma that I have yet encountered. Though it is not in wide distribution, it won multiple awards this year and is currently available to stream on DOC NYC for $15, through November 26. I recommend it highly. You can find the link information here.

I must add that it was not easy for me to watch. Meyer’s experiences, though more debilitating than my own, resonated deeply. Everyone’s encounter with scleroderma is unique, and his has been brutal. Even as I have been living with my own version of this inscrutible disease for more than four decades, now, I gained a different sense of what I’ve been up against all these years that really shook me. At the same time, I profoundly appreciated how he has come to terms with all that scleroderma has thrown at him through his exploration of Klee’s exquisite art. We each have to find our own path in dealing with chronic illness. Meyer’s journey is inspiring.

Above all, the love of Meyer’s family and friends has been essential to his ability to persist through life-threatening challenges. I feel equally blessed.

To you and yours, Dear Reader, my best wishes for a healthy and happy Thanksgiving. 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: Communing with Paul Klee at the Museum Berggruen in Berlin, 2018. Photo by Al.

Small Miracles

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For months, at least since March and maybe longer, I’ve had a charcoal-gray pit of calcium sticking in my left thumb. I have not been able to budge it or tease it out with tweezers. It has been lodged there, staring at me as I change my bandages morning and night. Sometimes it hurts, other times not. Sometimes it gets infected. Mostly it just serves as a reminder to handle things with care so I don’t bang it.

That is, until this weekend. I was doing my evening routine of cleaning my ulcers and re-bandaging them when I suddenly realized that the calcium pit was gone. No bigger than a poppy seed, it lay there on a piece of tissue. Really? I wondered, rolling it between thumb and forefinger, you were that small all this time?

More calcium hides beneath the surface in both of my thumbs. In x-rays, they look like long white chains from thumb tip to below the joint connecting thumb to palm. Slowly but inevitably, the pits work their way out of the skin. There’s nothing I can do to get rid of them but wait until they are ready to emerge, then wait until each one dislodges.

There is an obvious lesson about patience, here. I’ve learned to play along, not to aggravate the skin and nerves by jiggling the pit in a vain attempt at extraction. As long as I’m careful with how I cushion it with dressings and use Aquafor ointment to keep it moist (but not too moist) eventually, the calcium will exit on its own.

But there’s something else that fascinates. And that is how my body continually surprises me with its ability to heal, scleroderma or no scleroderma. It doesn’t always happen the way I want it to, or on a convenient timeline, but it does happen. That a calcium pit the size and color of a poppy seed can cause so much discomfort and then, one random evening, bid adieu, is one of the mysteries of this disease and the miracles of the healing process.

And so, until the next one appears, I will tend the hole in my thumb as it fills and be grateful for the reprieve.

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: Victoria Tronina