Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Enter 2024

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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

Give a Listen

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My mother was a very good listener. When I was growing up, we would spend hours together, sitting on our couch, as I told her all about my day, friends, latest boy crush, and whatever else was on my mind. She was ever attentive, thoughtful, and gave me the time I needed to express myself. I always felt heard.

In her years at Black Mountain College, Mom was fascinated by psychology, the physiology of perception, and Gestalt theory. After graduation, she dreamed of becoming a psychiatrist. Preparing for med school in the late ’40s, she assisted in research about brain chemistry at the University of Illinois-Chicago. Then she met my dad and, like so many women of her generation, dropped her career plans to devote herself to him and becoming a mother.

But she remained a student of human nature, and I learned a lot in our long conversations about why people do what they do, lessons I’ve carried and refined throughout my life. And I learned how to listen with intention, too. It was perhaps her greatest gift to me.

I was thinking about all this while listening to an interview with the writer David Brooks about his latest book, How to Know a Person. Describing what he learned while researching the book, Brooks talks about ways to have the kinds of meaningful conversations that bring people closer together. Being fully present, asking questions that go beyond superficial, being genuinely interested in the answers and probing deeper, resisting the urge to be a “topper” who can only relate to another’s experience by turning every conversation into one about yourself—all are key.

Much of what he discusses resonates with the lessons I learned from Mom. At a time when so many feel so alienated from each other, it’s worth a listen. Here’s the link.

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: Harli Marten

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

600

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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

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.