Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Beautiful

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One of the scariest aspects of a scleroderma diagnosis is to realize how deforming this disease can be. Everyone is different, and how your body changes will be unique to you. Early on in my progression, the skin on my face became so tight that I began to have discomfort blinking. For some, this facial tightening can make it impossible to close lips over teeth. It can reduce your hands to look clawed. At its most virulent, it can make obvious the skeleton beneath.

For all those who live with scleroderma, this is a terrifying prospect. For women, especially, among whom the disease is four times more prevalent, and especially for young women, it can be a harsh sentence in a culture that puts such a premium on youth and physical perfection, narrowly defined.

I have been extremely fortunate that, over the forty-plus years I’ve lived with scleroderma, my skin loosened. I credit the use of D-penicillamine, with which I was initially treated. Six months after I started taking the medication, I began to once again have face wrinkles. Therapies have advanced significantly since then.

Nonetheless, my skin is still not normal on my face, particularly around my mouth and eyelids, and in my fingertips. It has been a long adjustment to aging prematurely. That is why I found this interview with Chloé Cooper Jones, author of the recent memoir Easy Beauty, to be so apt and powerful.

Cooper Jones, who was born with a rare congenital condition called sacral agenisis, has spent her life living with reactions to her visibly disabled body. A writer and philosopher, she explains the difference between the kind of beauty that seems obvious (a sunset, a Monet painting) and that which is more complex and difficult. Her conversation with sociologist and writer Tressie McMillan Cottom delves into the ways we define beauty, what makes beauty intrinsic, and how we view and live with disability.

It is insightful and inspiring. It’s given me some needed perspective as my body continues to age and I contend with my own scleroderma. I hope it does for you, too.

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: davisuko

Things That Go Bump in the Night

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Returning Sunday afternoon from a four-day weekend in Raleigh, North Carolina, for a very sweet family wedding and a celebration of our elder daughter’s birthday with friends and family, I was exhausted. It was our second trip in just two weeks, and per usual, I managed all the logistics—which I enjoy doing and am good at, but there’s always a lot to track. So, it was great to get home, with no more responsibilities for anyone else, and go to bed early.

I slept for ten hours. At some point, maybe around 3:00 a.m., I suddenly woke because I thought I heard a loud musical note. Yes, I know, that sounds weird. It was. Some kind of plucking of a stringed instrument or a bell or what, I can’t recall. But it was quite distinctive. I became conscious enough to realize I’d imagined it and, thankfully, went back to sleep.

This is not the first time I’ve woken from a loud noise that wasn’t there. Occasionally I’ve roused because I’m sure the telephone rang (we still have a landline, believe it or not). Then I’ll realize it didn’t and go back to sleep.

So, after Sunday night’s weirdness, I looked online for hearing loud noises in your sleep. And, sure enough, the phenomenon is real. In fact, it has a very evocative name: Exploding Head Syndrome (EHS).

No one knows what causes EHS, but apparently it is more common among women. It doesn’t harm your health, and there is no known cure. It may be triggered by fatigue and stress. It also may be related to damage or dysfunction of the inner ear, which, in my case, seems a possibility, given that we had just flown, which affects pressure in my ears, I have occasional episodes of vertigo due to loose crystals in my inner ear, and have had tinnitus in both ears for decades.

In any case, at least now I know what’s going on. And given all the distressing craziness of our world these days, knowing that my head actually is exploding surely fits the moment.

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: David Matos

Almost Autumn

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With Labor Day behind us and schools here already in session, it’s starting to feel like fall. The maples on our street began to drop leaves, a few at a time, in mid-August. A week post our vacation, the days are noticeably shorter, with sunset at about quarter past seven.

I find this time of year bittersweet. It’s hard to let go of summer, even as it’s a relief to be out of the 90+ degree Fahrenheit heat wave and soupy humidity of the weeks before our travels. At the same time, with schools in session, everyone back from vacations, and the Jewish New Year right around the corner, fall is always about new beginnings. Even as trees go bare, they are storing sugar for the long winter ahead and forming new buds.

We have one more big family celebration coming up this weekend, and then it’s time to focus, once again, on work and writing and election season, on putting away summer clothes and getting back into layers, on birds migrating south and trees hardening off. I’ve gotten away with only my thumbs in bandages for several months, and I know that is about to change as the temperatures drop and more ulcers appear. So it goes.

To everything there is a season . . .

(Click the link, above, if you can’t see the embedded video of Turn! Turn! Turn! with Judy Collins and Pete Seeger.)

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.

Ooh la la!

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At long last, after three years of Covid delays and a bout with Omicron in July, we finally traveled abroad on vacation. This time, we went to Canada, spending a meaningful weekend with family in Toronto and a lovely week in Québec City, which feels like going to Europe without flying across the ocean. I’ve been intrigued by the capital of Québec for years, and it was well worth the wait.

We stayed in the charming Old City and walked and walked up and down the hilly streets, using the funicular only a couple of times at the end of our visit because my feet were giving out. Over a week’s course, we learned a lot about the city’s military history and First Nations. Québec City was built on a high cliff as a fortress and played a major role in the Seven Years War between France and Britain for control of Canada. In a decisive battle in 1759 on the Plains of Abraham, the British won, a turning point that soon led to British control of the territory. This, after the French laid claim to lands that had belonged to First Nation peoples for thousands of years prior. Stories unique to place and time, but all too familiar.

The Old City’s architecture features stone buildings with dormers and metal roofs that are curved at the bottom so snow falls away from the foundation. Churches abound, though we learned that here, as elsewhere, the number of church goers in this predominantly Catholic province are declining. So some churches are being repurposed, including a tasteful renovation of a church into a public library.

We saw wonderful and moving art as well, including a powerful outdoor installation near the port by Ai Weiwei of hundreds of life jackets worn by Syrian refugees, which he collected from the Greek island of Lesbos. Talented street performers juggled and balanced on unicycles in the plaza next to the posh Chateau Frontenac, a landmark hotel. Beyond the Old City’s gates, we toured the Parliament building, which is modeled after the Louvre in Paris and home of Québec’s National Assembly, and the Musée national des beaux-arts du Québec, where we saw an exquisite special exhibit of carvings by Inuit artist Manasie Akpaliapik.

And we traveled up the St. Lawrence by bus to explore the Chute Montmorency, a thundering waterfall that is slightly higher than Niagara Falls, and from there by train to Baie-Saint-Paul, a pastoral town that is home to many artists. Other highlights included a guided tour of the Musée Huron-Wendat and a relaxing cruise on the St. Lawrence. A good thing we walked so much, even as I was exhausted by day’s end, because the food is excellent and the deserts magnifique.

Everywhere we went, we were surrounded by the lyrical sound of spoken French. While I was able to understand about 80 percent of what I read in museum texts, signs, and other materials, the spoken language is very fast and also a dialect, so we had to converse in English. Nonetheless, we were both grateful to our high school French teachers so long ago, that we were able to keep up as well as we did. And, yes, people really do say “ooh la la” instead of “oh wow!” Much sweeter to my ear.

So, here are some of my favorite images from the trip. Profitez-en bien!

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.

Rescue Mission

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As you may have guessed by now if you follow my blog, I’m a bit of an amateur naturalist. Learning about all kinds of plants and creatures gives me joy. Sitting on our deck when I’m writing longhand (best way to pour out the first draft of a story), I love to watch the birds at our feeder and other wildlife going about their day (which can also distract me from my writing, or help provide the pause that summons the next sentence). Our feeders hang outside the kitchen windows, my favorite view as I eat breakfast or lunch.

So, I can report, with delight, that we saw another hummingbird on Sunday, pale olive green with a lemon yellow breast. It hovered and sipped, zipped away, then returned for another drink. I wasn’t nearby for other visits, but the nectar level in the feeder was slightly lower by evening.

However, apparently the hummingbird’s activity attracted some other visitors—bees. As we were leaving the house Sunday evening, I noticed them investigating the feeder. By the time we returned, there were no more bees crawling around it. They had all managed to fall inside.

What to do? Bees are important pollinators, essential to world food supplies, and honeybees are in serious decline due to a variety of factors, especially use of pesticides and other agricultural chemicals. At first I thought they had all drowned, but when I tapped the feeder, they started swimming. Then they started humming. It was as if they were calling for help. (Yes, I’m a softy with a writer’s imagination. But still possible.)

My hands are not facile enough to simply pick up the feeder and dump the contents, especially at risk of getting stung. But with salad tongs and long plastic kitchen spoons, I managed to unhook it and spill it on the ground. When I checked back a while later, most of the bees were still curled up on the grass, but at least one was wobbling about. The next morning, they were all gone. So either some other critter came along and had a feast, or they slept off their sugar high, dried out, and flew away. I hope the latter is true.

A little online research turned up a few ideas to avoid a repeat: diluting the sugar water solution to a 5:1 ratio, still sweet enough for the hummers but not as appealing to the bees, is my next step.

And so, Dear Reader, I hope you find some inspiration and fascinating drama in your own back yard. I’m taking a break for the next couple of weeks and will be back at the end of August. For those in the northern hemisphere, savor the rest of summer, and if you are down under, I hope the end of winter treats you 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: Leandro Fregoni