Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Healing Stories

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One of the most complicated aspects of scleroderma is how it changes our relationship with our bodies. Hands that were once dexterous now are cramped, facial skin no longer flexes. It can become very hard to pick up objects, bend over, reach. In its most virulent form, this debilitating disease literally traps you in your own skin. It’s painful, exhausting, achey. Not to mention internal organ damage to heart, lungs, kidneys, gut.

As I’ve written before, I’ve been graced with a reversal of some of the worst aspects of scleroderma during my first decade of the four that I’ve been living with this chronic disease. I credit the use of d-penicillamine early on, a treatment that was never fully embraced by the medical profession due to inconclusive research. But it worked for me, loosening tight skin in my hands, forearms, and face. I still have abnormal skin that limits my dexterity and ability to open my mouth, but nothing like before, when it was becoming uncomfortable to blink.

Grateful as I am with that gift, I also still wrestle with how scleroderma has affected my face and damaged my hands. Scleroderma ages you prematurely. I’ve learned to make the best of what I have, but it can still be discouraging to look in the mirror.

So, I deeply appreciated an interview that I heard over the weekend with Krista Tipppet of the On Being Project, and Matthew Sanford, about “The Body’s Grace.” Sanford, now in his 40s, survived a car crash when he was 13 that took the lives of his father and sister, and left him paralyzed from the waist down. He speaks of a deepened relationship with his body, a knowing derived from inner silence, a reconnecting with those parts that no longer feel and work as they once did.

Sanford likens this awareness to “walking from a well-lighted room into a dark one. At first, you can’t see anything. But if you sit, and you pause, and you listen, usually there’s enough light to get across the room. It’s not going to be like turning the light back on, but in fact, the world gets this other kind of texture that makes it beautiful. It also makes it scary in the dark; it goes either way.”

Coming to terms with a life-altering accident or disease is a lifelong process that Sanford calls a “healing story.” And, as he and Tippett discuss, all too often, in our youth-obsessed culture, the healing stories we tell ourselves are ones of overcoming physical and emotional adversity. With enough willpower, we, too, can be the 80-year-old who runs a marathon or skydives; we, too, can “power through” anxiety or depression.

Though willpower is an important skill for confronting physical weakening or loss or just plain aging, Sanford suggest that it shouldn’t be the sole or primary skill. Finding your own, unique path of mind-body integration when the connections are weakened or severed is a journey toward a deeper relationship with your physicality and your body’s miraculous striving toward healing, even when damaged. It is also a journey toward deeper appreciation of your connections with others and the world.

We are always so much more than our medical diagnoses. We are so much more than our physical limitations. Each of us writes our own healing story as we learn how to see in the dark.

Here’s a link to the On Being podcast interview with Matthew Sanford as well as a transcript.

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: Spenser Sembrat

The View from Black Mountain

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Eighty years ago, my mother graduated from Black Mountain College in North Carolina. She was one of the few students in this small, experimental college to actually graduate, though the fact that the institution was never accredited caused some issues when she began to apply for work beyond the home in the 1970s.

No matter. BMC was a unique, character-shaping environment that left a deep impression on all who studied and worked at its bucolic campus, beneath the beauty of the Blue Ridge Mountains, near Asheville. The college, which existed from 1933 to 1957, placed the arts at the core of its curriculum, with a particular focus on how a specific material or medium—paint, clay, fiber, paper, wood, concrete, photography, dance, music, poetry, and more—defines and informs the act of creating. The place was a hive of interdisciplinary cross-fertilization and produced a generation of extraordinary talents, taught by some of the most influential artists and thinkers of the 21st century.

My Mom, however, was not an artist. She was a psychology major. But she also helped to build BMC’s Lake Eden campus, its second home, as part of the school’s work collective. Collaboration was key to the BMC ethos, perfected in the work program. So was democratic governance by students and faculty. Among Mom’s fondest recollections of her three years at Black Mountain was learning carpentry, pipe-fitting, masonry, and electrical wiring to help build the Studies Building and the college’s farm buildings.

I was immersed in this inspring environment over the past weekend at a conference about Black Mountain, which I shared with our younger daughter. It was a fascinating deep dive into scholarship about BMC, its students and faculty and staff, its unique educational philosophy. We met some truly wonderful people who welcomed us into their circle with open arms. It was also a needed respite from the chaos gripping the world, even as grim headlines tap-tap-tapped on my mind throughout our stay.

Somehow, despite all its many financial struggles, BMC managed to flourish through the Great Depression and World War II as an avant-garde island in the Jim Crow South. The McCarthy era of Red-baiting, as well as changes in GI education funding, eventually spelled its demise. But the cultural and intellectual contributions, as well as the mythology of Black Mountain, live on. I will be processing what I’ve learned for a long time. Already, though, I feel the gravitational pull toward a BMC way of thinking and doing. All good.

Here are some images of our visit to Asheville, the weaving exhibition at the heart of the conference, the former campus, and the stunning Blue Ridge Mountains. Enjoy, y’all.

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.

In Stitches

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It’s been five years since I last had calcium deposits removed from the bridge of my nose, the fifth time I’ve endured this procedure. Usually, I take care of this annoying issue about every three years, but the pandemic put that on hold this time around—which ultimately meant that the calcinosis got worse.

Originally, I thought the problem was caused by the weight of my glasses. I get calcinosis in my fingers at pressure points, so it made sense. But I switched from wire frames to very lightweight Silhouettes years ago, and it has not solved the problem.

No one really knows why scleroderma can cause this build-up of calcium in unwanted places. My theory is that, regardless of how thoroughly my ENT plastic surgeons have tried to remove the calcium growths from my nasal bone, a seed remains that grows more calcium crystals over several years. They always biopsy what they remove, and it always (thank goodness) is benign. In any case, once it gets big enough, it becomes unsightly and increasing uncomfortable, stretching skin that is no longer very elastic.

This spring I met my new surgeon, Dr. E., who is chief of Otolaryngology at Boston Medical (his predecessor had done the last three extractions). I liked him and his team immediately. He is thoughtful and conservative about performing a procedure that is either unnecessary or has low potential for success. In fact, he was at first reluctant to take me on, given how fragile the skin on my nose has become, but we came to a meeting of the minds, with a plan to do a skin graft if necessary to close the wound.

And that is what he and his resident did last Wednesday. I’d had to postpone the procedure twice over the summer, given unexpected schedule conflicts. During that delay the calcium had pushed through the skin, so I was managing an open wound and doing my best to avoid infection until we could finally take care of it.

Nonetheless, I was not looking forward to the procedure. Getting Lidocaine shots in your face is no picnic, and neither is having the bridge of your nose cut open and calcium deposits scraped out of bone. Then there was the added complication of the skin graft, which they took from below my left ear. And sewing me back together.

I’ve learned from past experience that I do not do well with Lidocaine mixed with epinephrine, which is a preferred concoction because it limits bleeding. So, instead, with plain Lidocaine they had to use a cauterizer, which, even with local anesthesia, feels like pins and needles, and sometimes like tiny darts. And it smells like burnt roast, which is, of course, essentially what’s happening.

This all took over an hour. I did my best to keep breathing evenly through the process. Some music from the High Holidays was a welcome ear worm. In addition to suturing the graft, they stitched a rectangular piece of gauze, called a “bumper,” on top of the graft to hold it in place for a week. That comes off, I sincerely hope, tomorrow. Between the stitches under my left ear and the bumper, I looked a bit like Frankenstein’s monster when they let me see my face in a mirror.

“Can I have something to cover it?” I asked.

“What did you have in mind?” asked the resident.

“A bandage?” It seemed rather obvious. His concern was that it not pull at the bumper to dislodge it in any way, but there was no way I was going to walk around with a piece of bloody gauze stitched to my nose for a week. So he found a light blue bandage, which I later replaced with one of my good cloth bandages, and I have been carefully tending it since. I also started antibiotics the day of the procedure to avoid infection. Pain has been easily managed with OTC meds.

So, this has been the every-few-years routine. Except, Dr. E told me when he finished, there’s not a lot of bone left where the calcinosis has repeatedly invaded. He was clear that this is the last time he would do such an extraction. If it grows back, which it most likely will, then we’re talking rhinoplasty. “Well,” I quipped, “at least I have a lot of nose to work with.”

And that is where I find myself after Extraction #5. It’s a lot to process. If the calcinosis re-emerges in a year or so, I may not wait until it begins to form a noticeable bump to undertake the inevitable. I’ll be 70 next April, and if I need major nose surgery, it’s better to do it sooner than later. In the meantime, I’m glad this round is done. And the immediate benefit: I can breathe better.

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: Anne Nygård

First in Line

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I got my new Covid shot a week ago, as soon as it was available. Glad to have that out of the way. It seems that the wily virus is popping up everywhere, once again disrupting lives, albeit with less serious risks for most, thanks to progress with vaccines and a build-up of natural immunity.

Just one way Covid has caused disruptions, of late: I sing in a quintet at my synagogue for the Jewish High Holy Days. Just before Rosh Hashanah the weekend before last, the wife of one of our tenors tested positive, so he could not sing with us out of an abundance of caution and consideration for others. Then this past week another member, who also sings tenor and was covering for the first tenor, was exposed to Covid while traveling, so we were scrambling to figure out who could sing which solos and harmony.

Fortunately, our game of musical chairs resolved over the weekend. The first tenor’s wife is better and he never tested positive, and the other tenor remains negative and symptom free. So both could join us in song for Yom Kippur, although the second tenor wore a mask to be extra safe.

So it goes in this post-pandemic time, when we all wish Covid was behind us, but it still lurks. I got the Pfizer vaccine, since I’ve had rashes and aches from Moderna. While my arm was a little sore for a couple of days and I felt very tired by day’s end, that was it for side effects. A small price to pay for protection.

Next up, getting a flu shot in early October, and then I’ll get the RSV vaccine. I take them one at a time, to avoid a pile-on of side effects. Not so for Al, who got his Covid, flu, and second shingles vax all on one day last week and never felt the worse for wear. I admit, I’m jealous.

However you go about it, Dear Reader, I hope you take heed and get your Covid vax as soon as possible, if your medical condition allows—for your own well-being, and for that of those around you. While the worst Covid outcomes are limited by antiviral medications like Paxlovid, the risks of long Covid remain real and serious, and increase with repeated infections and lack of vaccination. 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: Tim Mossholder

Enter Fall

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It is rainy and chilly and dreary as I write on Monday afternoon. Here in Central Massachusetts, we were fortunate to avoid the worst of Hurricane Lee over the weekend, and the rest of the week looks sunny. But I’m feeling the chill in my hands today, knowing that fall officially begins this Saturday.

Already, the days are notably shorter, the transition even more striking since we came back from the Baltics, where the sun sets later because it’s farther north.

And so, it’s time to make my annual adjustment, mentally and physically, to inevitable colder weather. I should be used to it by now, but I always hate to bid summer adieu. Time for lined leggings and sweaters and wrist-warmers, heavier coats and gloves and hats, more effort to get dressed and out the door.

Sigh.

At least there is fall foliage to look forward to. That, and crisp air, and fewer mosquitoes, and the way that autumn light etches shadows. Even as leaves begin to drop and trees harden off for winter, new buds are forming. My hands will adjust as I remind myself: Only three more months until the pendulum swings and the days grow longer, once again.

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.