Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Job 1

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Well, my blog is late this week. But I have a good excuse. A few, actually.

Usually, I write on Mondays for Tuesdays, but this Monday was Yom Kippur, so I intended to write on Sunday for Tuesday. But on Sunday, Al and I spent all day cleaning and reorganizing our kitchen, which had been out of commission because we had our maple wood floor refinished over the course of Wednesday, Thursday, and Friday. I could have thought ahead and written this blog any one of those days, but I didn’t.

Or, rather, having kitchen stuff all over our living room, dining room, and in the garage for the better part of the week just really threw me off. Floor refinishing is a big, messy, smelly job that requires removing anything that could attract a film of sawdust. There was something about having one of the most-used rooms in our home inaccessible, and all the stuff that was on the kitchen floor, counters, and walls cluttering up the rest of the house, that just felt chaotic.

Because of the way our house is constructed, the kitchen floor—which had become very worn and marred in the 21 years we’ve lived here, and suffered some water damage recently that prompted the job—extends into a little hallway to a half-bath and the basement door. We have a second fridge in the basement, but the only way to access it for meals was to go outside, around back, open the storm-cellar doors, and get in through the basement backdoor. The weather was good, so we could at least eat out on the deck. Needless to say, I got in plenty of steps with every meal. But that routine was also disruptive.

Tuesday, midday, as I write, everything is back in place. We can use our kitchen again. It’s really amazing how I can concentrate better. The kitchen floor looks great, we improved some of the organization, and the room is cleaner than it’s been since we moved here, I am sure. Order begets focus. Disorder begets mental fog.

Which brings me to the obvious parallel with Covid Time. We’re all discombobulated by the pandemic’s disruption and health threats. Our “new normal” isn’t really normal, it’s just a very long holding pattern, in which we’ve (hopefully) been able to establish new routines and ways of structuring time. How doable this is depends in large part on health and financial stability. I’m extremely grateful that, so far, we’ve been able to maintain a secure foundation during the pandemic.

Knowing that I have to live with the confusion and nuisance of a closed-off kitchen during a messy refinishing job is a minor inconvenience with a known end point—and a definite benefit. Living through a pandemic without clear, universally accepted public health guidelines, without extensive testing and contact tracing, and in a divided and divisive society where mask-wearing—the best defense against spreading the deadly virus—is a political litmus test, is enough to make anyone feel lost.

We can’t change the reality of COVID-19, but we can certainly change the trajectory of this terrible pandemic with common sense public health policy. Voting has started in many states across the U.S. Make sure you’re registered. And vote this fall as if your life depended on it. Because yours, mine, and everyone else’s does.

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.

Souvenirs

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Staycation/home-decluttering week is over, and I’m back at my computer. And, of course, we didn’t get nearly as much done as I had naively included on my detailed to-do list. But we still made a lot of progress.

Each day, we tackled a different room, and each day Al carted out bags of recycling and give-aways. We made a huge donation of toys to a local neighborhood center that serves many families throughout our city. Both of our daughters have helped, either in person or via video chat, to determine what stays and goes. I’ve learned a lot about getting home improvement estimates from contractors, and we have one big project scheduled and another in the works.

In the process, I read through about fifty years of saved correspondence (writing letters is truly valuable), sorted old papers (no, I really don’t need my grad school graduation program), and sifted boxes of photos (old color prints stick together and are useless unless mounted in an album). Favorite finds include an edited copy of my college application essay, several priceless letters from my grandmother, and a series of old ID cards from my twenties, some of the only pictures I have of myself pre-scleroderma.

To break up the work, we took two afternoons off for day trips: on Thursday to the Fitchburg Art Museum—a real treat, our first such visit since the pandemic—and on Sunday to Allens Pond Wildlife Sanctuary, run by Massachusetts Audubon, on the southeastern coast. So, we finally got to the ocean this summer. The woodland hikes were beautiful, the shore, blustery and delightful.

On the way back to our car, walking along the rocky beach, I noticed a very smooth, gray rock and picked it up. It has a slight depression on one of its six sides. Another is slightly rounded. It feels soft, even though it’s hard. It fits perfectly in my hand. Maybe it was once a cobblestone in some old New England street. It’s been tossed and tumbled for who knows how long before it ended up at my feet. Its presence, beneath the bright, late August sun, spoke to me.

I brought it home to use as a paperweight. But there’s something about holding it that feels comforting. Just as I’ve sifted and sorted old stuff to glean the mementos that capture important personal history, I find something grounding in a rock that perhaps once supported thousands of feet and carriages and cars, that was discarded as useless, that spun through an ocean of turmoil, and is now source of beauty and calm. There’s a lesson to be learned there—and remembered—at the end of a pandemic staycation, when the world seems upside down.

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.

Time Out for Family

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This past weekend, five months into the pandemic, we finally got to see our daughters in person, together. Family time has always been important to us, but all the more so now.

Our younger daughter came up from Philly, which was good timing, because as of the first of August, Massachusetts is imposing new Covid restrictions for out-of-state visitors. Our older daughter came out from Boston. On Saturday afternoon, we took a lovely walk at Garden in the Woods in Framingham, Mass., and on Sunday, we were all home for an outdoor supper on our deck, meaningful conversations, and a lot of laughs. Both daughters slept over. It’s been a long time.

Every day we share together is a blessing. I hope the same is true for you and yours. Here are some of my favorite photos from our nature walk. . . .

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.

Rx for TP

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The Great Toilet Paper shortage may have eased for now, but in recent months, when little was to be found on grocery store shelves, I found myself confronted once again with challenges of personal hygiene. As I’ve written before, cleaning up after #2 is not easy when your hands don’t work well. This has been exacerbated for me recently with painful calcium deposits in the pads of both thumbs. But with toilet paper a scarce commodity, I’ve had to be conscious of conserving paper—as any of you with scleroderma well know, that makes it extra hard to really do the job.

For several years I relied on “flushable” wipes, which are a very efficient solution. But I had to give up after the second of two disastrous lessons in the physics of sewer line back-ups into our basement. As our plumber said, there’s no such thing as a flushable wipe. Indeed, not only do they clog plumbing, but also those wet wipes that make it into the sewer system cause major problems in public waste sanitation systems, creating what the industry terms “fatbergs” that destroy expensive pumps.

After our trip to Greece last summer, where you quickly learn to toss all toilet paper in the handy waste basket next to the toilet, because the plumbing and sewers can’t handle even regular toilet paper, I tried a modified approach of disposing my wipes, wrapped in more toilet paper, into the bathroom waste can. But this uses a lot of paper, once again, and the wipes are also still not biodegradable. Moistening toilet paper with water doesn’t work well, either, if (a) you have bandages that you don’t want to get wet, and (b) the toilet paper often disintegrates.

So, this brings me to my latest solution, which I found thanks to all the articles and blogs being written about toilet paper alternatives when none could be found due to the pandemic: a postpartum peribottle. Designed for women to ease soreness after childbirth, this is a soft rubber bottle with a spout with a hooked end, so you can hold it upside down, aim and squirt. It does not eliminate the need for toilet paper, but it certainly cuts down on how much.

I found one for $15 online, and it has a collapsible spout and even a little bag for travel. It takes a little practice, but it is definitely the easiest and cleanest solution I’ve come across so far. And it’s far cheaper than installing a bidet.

Even if you don’t have hand problems, using a peribottle is a mighty convenient way to conserve toilet paper—which, in turn, saves the trees that toilet paper is made from. And saving trees helps to moderate climate change and maintain animal habitats—which matters for a host of reasons, including the mounting evidence that human encroachment on natural habitats contributed to the way that a bat-borne virus morphed into the COVID-19 pandemic. It’s all interconnected, folks.

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: Jasmin Sessler

Into the Woods

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Last weekend, I was starting to go stir-crazy. I hadn’t been outside more than twice during the week to walk around the neighborhood, thanks to chilly rain, and, given the coronavirus surge in our region, I did not run any errands. So when the sun finally emerged and the temperature hit 60, we drove to a nature preserve about a half-hour south of home.

On the way, we passed electronic highways signs urging out-of-state visitors to Massachusetts to self-quarantine for 14 days. Necessary warning, but it made my heart heavy. Traffic was moderate, and the small parking lot for the preserve, Cormier Woods, was almost full. With no one nearby, yet, we looped our face masks around our ears and tucked the fabric under our chins.

As soon as we headed down the first trail, I began to relax. Just getting out in fresh air, in a sylvan setting, was a relief. Nature, which has brought us the deadly coronavirus (with all too much help from humans), also now brings life’s rebirth here in the Northern Hemisphere. Each emerald sprout, each hopeful pine sapling pushing through fallen leaves, reaching for light, promised that life still flourishes.

When other hikers passed us by, we all performed the new greeting ritual—pull up the mask over your nose and mouth, step to the side about six feet, and wish each other well. Everyone seemed in good spirits, and it was nice to see others in the flesh, rather than via computer pixels.

Here is a sampling of that lovely afternoon. I hope, Dear Reader, that you, too, are able to find some safe relief in whatever way Nature provides for you.

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.