Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

Fuzzy Thinking

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So, this just happened. I got a text message, supposedly from Nikki Haley, who, in case you’re not into U.S. politics, is running for the GOP nomination for president: It’s Nikki Haley. Do you have a minute to talk, Erin?

I promptly typed STOP and blocked the phone number.

Honestly, who thinks up these marketing campaigns? I have no desire to speak with Nikki Haley or any of her surrogates, if that is, indeed, who contacted me. Nor will I speak with anyone who thinks my name is Erin. Nor do I have a minute to waste on this distraction. The only plus: it gave me the opening for this blog post.

Which is about the multiple ways that we are pushed and pulled in so many directions that it’s hard to focus on anything substantive. Which is exacerbating what I’m finding more and more frustrating: the fact that my memory and attention, while still quite good, are just not as sharp as they were for most of my life.

Some of this is aging. I commiserate with my peers about the inevitable experience of walking into a room only to totally forget why I went there. Word finding, especially when I am stressed, is like tugging on a rusty file cabinet drawer. When I get blocked like this, I end up relying on words like “thingy” to express myself. Then there’s the aggravation of having two ideas in my head, writing one down, and in the process, forgetting the second idea until I sit back and let my mind settle.

Some of this is also about too much multi-tasking and interruptions and distractions and beeping and dinging computers, phones, and what-have-you. Tech gadgets certainly make life easier. I can’t imagine going back to using a typewriter, not only to avoid the wear and tear on my hands, but also because writing on a computer is just so much more intuitive and seamless. I value my iPhone, a portal to the world. But of course, that’s just the problem. There’s too much going on all the time that pulls me from what’s really important and requires concentration. It’s also a great magnet for procrastination.

So, aging and too many distractions are certainly contributing factors. But some of what I’m experiencing is brain fog that is associated with scleroderma. I had a conversation about this with my Boston Medical rheumatologist a couple of weeks ago. While scleroderma, thank goodness, is not associated with brain damage as are some other autoimmune diseases, like lupus, not much is known about what happens to people who have had scleroderma for decades, like me.

The way he put it was that people are living longer with scleroderma than in the past, but there have been no rigorous studies about how the disease affects the brains of those of us who have been dealing with this for decades. It’s possible that there is some impact on blood flow to the brain.

I found one study from 2021 that associated mild cognitive impairment (MCI) with systemic sclerosis (SSc), but the most relevant predictive factors were lower education, poor nutrition, and high ANA positivity. There are other studies that point to some mild decline in cognitive functioning in people with SSc. But I have yet to see any focus on long-termers like myself.

I was originally diagnosed with SSc, but am now catergorized as having localized scleroderma (LoS). Given some internal organ involvement, I’m probably somewhere on the continuum between the two. Regardless, something is going on. Maybe brain haze is a more accurate description than brain fog. My thought process is not blinded by fog; rather, it just feels fuzzier somehow. And because I’m very aware of it, it infuriates me, which doesn’t help, either.

What to do? The best way to deal with this, my rheumatologist agreed, is by doing the obvious: get enough sleep, eat properly, and exercise. With the arrival of colder weather, I’m falling short on the latter, which I know really does help to clear my head. So I need to get out there and walk, even if it’s chilly.

What else? Ignore ridiculous text messages from Nikki Haley.

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: Mathieu Odin

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.

Fall Back

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For the first time since I can remember, setting back the clocks this weekend didn’t bother me. Usually, the shift to earlier sunrise and the quickening of darkness at day’s end leave me feeling a bit claustrophobic until my circadian cycle readjusts. But not this fall. Oddly, the changeover feels like it fits.

There’s been a lot of debate about whether we should change the clocks at all. The U.S. Senate unanimously passed the so-called Sunshine Protection Act last year, but then the bill stalled in the House of Representatives. Given the current chaos in Congress, I doubt if it will go anywhere soon, but the goal is to make Daylight Savings Time permanent, nationwide. Why? The main arguments involve, in part, the notion that more daylight hours for evening activities will provide an economic boost for restaurants and entertainment venues.

Compare that to a push by the American Association of Sleep Medicine (AASM), which advocates for sticking with standard time year-round. Here the rationale is that standard time better aligns with our bodies’ natural rhythms. More sunlight earlier in the day helps our brains to shut down production of the sleep hormone melatonin and switch over to wakefulness.

I had read about this debate last year, and when we switched to DST last March, I felt very off-kilter. Now I feel back in synch. Coincidence, or the power of suggestion? I have no clue.

In any case, everyone seems to agree that switching back and forth twice a year is not good for anyone. According to the AASM, this time toggling actually increases risk of heart attack and strokes, mood disturbances and even suicides.

I’m curious to see how I feel as darkness settles sooner over the next few weeks. Not having to drive back from a doctor’s appointment in Boston in late afternoon or run errands at the end of the day definitely helps me to adjust. So does focusing on the stark light of November, when trees are bare and the shadows sharp, a time of transition that I find particularly striking.

And so does the knowledge that in just over six weeks, our days here in the Northern Hemisphere will gradually lengthen, once again. For all the turmoil in our troubled world, Nature’s rhythms soothe.

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: Jack Hunter