Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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.

Touchy Choices

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I’ve been venturing out a bit more, lately, for various appointments. Wearing a mask in public is both required here in Massachusetts and a no-brainer, for my own health and those around me. But I’m debating whether I always need my second level of protection against Covid: disposable gloves.

I have a stash of gloves that I use for cooking, because I learned long ago that touching raw food with bare hands is an invitation to infected ulcers. So now the question is whether I need to wear them whenever I go out to a place where I may have to purchase something in Covid Time.

Here’s the problem: Inevitably, with credit card terminals, you have to push a button on the screen or use the pen device to do same. I really, really don’t want to touch any surface that’s been touched by so many fingers. Even the most conscientious sales clerk doesn’t sanitize the terminal regularly.

My default up to now has been to go for the extra protection and wear gloves. But sometimes it seems like overkill, and it’s also not great from an environmental standpoint to use all of those disposables that will live forever in a landfill. So this Monday, when I had a meeting that didn’t involve any financial transactions, I skipped the gloves. When I opened the doors to the office building, I pulled my sweater sleeve over my hand so I didn’t have to touch it. I was vigilant about not touching other surfaces. And when I was all through and back in my car, I used hand sanitizer.

Here’s hoping I didn’t miss a step. The whole thought process for a simple trip beyond my home safety zone requires so much concentration, being very mindful of everything I touch to avoid the virus. On the one hand, given my Covid protection protocols, I’m probably at less risk than ever of picking up an infection in one of my digital ulcers. On the other, I’ve still had a few minor infections that I could handle with topical ointment, and one major infection several months ago from having to go gloveless to a medical appointment in a local hospital, per their regulations.

So it goes. I hope you, too, Dear Reader, are doing all you can to keep yourself and your loved ones and anyone else with whom you come in close contact healthy and safe.

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: Emin BAYCAN

Crash Course

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I’m writing on Labor Day afternoon. The weather is beautiful, and I’m looking forward to a walk later. And my computer is working.

None of this is to be taken for granted. Normalcy is a shape-shifter, especially now, as we enter the fall countdown to the election, which all too often wakes me up in the middle of the night.

As if to present the perfect metaphor for our current unpredictable state in the States, on Thursday morning, I turned on my iMac per usual, only to have it stall in power-up mode. The Apple logo simply stared back at me after the progress bar completely filled.

So much for progress.

After numerous futile attempts to turn off the power and turn the machine back on (the electronic equivalent of beating my head against a wall), I realized I needed help. Several chat sessions with Apple techs got me only so far with attempts to reload the operating system. At least I had my laptop, so my work day was not wasted, but by evening, I gave up on the iMac and decided to try again the next morning.

On Friday I abandoned the chat support in favor of a phone call. And I lucked out with a wonderful tech support guy who stayed with me as I waited for the OS to download (a half-hour, at least). Turns out he lives in Montreal, so we discussed how Canadians are following our presidential election, Covid restrictions there and here, and also learning languages. He speaks seven: Portuguese (he’s from Brazil), French, English, Spanish, a little Italian, Mandarin, and is learning Russian. Wish my mind were that flexible!

Meantime, we got the software to open up, but my cursor froze, once again, in the upper left-hand corner of the screen. He suggested I buy a wired mouse to finish the set-up. What a concept! I said au revoir and headed out to Best Buy.

The mouse did the trick, and with one more call to tech support (this guy was in Oregon and we ended up chatting about greyhounds as pets while waiting) I got the iMac up and running again. I spent the rest of the afternoon updating old apps and the OS to the latest version, and everything is working perfectly again (for now).

A dysfunctional computer is certainly not the greatest calamity as long as you have backup. Frustrated as I was (and concerned that I might have to buy a new iMac, which is an expensive proposition) the whole experience turned into an unexpected opportunity to meet interesting people with different perspectives whom I never would have encountered otherwise. I also learned some new computer tricks and sharpened my problem-solving skills. And I was able to fix my iMac.

Not bad for what presented as a major roadblock at the end of last week. May all our issues be so pleasantly resolved by being open to unexpected encounters along the way.

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: Ryan McGuire

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.

Home Improvements

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If it weren’t for Covid, this week would have been abuzz with final trip preparations. We had hoped to go to Eastern Europe this summer to trace Al’s ancestry, with a side visit to see the town where my great grandfather Harry Herwitz lived. All that is now on hold (in one sense, a good thing, because the Herwitz family came from a town not far from Minsk, in Belarus, which, if you’re following the news, is in political turmoil over their election last week).

So, instead, we’re taking time off to work on our home. Last week we took care of some important electrical system repairs. There are leaking skylights to replace and a leak in my office roof (a converted porch), some painting to do, and a kitchen floor to refinish. We have some redecorating plans, too, which involve a lot of decluttering. Not exactly fun, but I’m hoping that by really focusing on all this stuff that we’ve put off for far too long, our home will be more organized, comfortable, and cozy.

Given that we’re all spending more time at home these days, it’s a worthy goal.

Over the weekend, I was listening to a podcast interview with Pico Iyer, who is a wonderful, thoughtful travel writer. He was speaking about how his travel has become more limited during the pandemic, and how it has brought him to appreciate his immediate surroundings much more. I have found myself doing the same, even on my walks around the neighborhood. Every time I walk, I see or hear something that I missed before—a purple door, a fairy garden, the chatter of katydids. These are welcome surprises.

We’ve had some unwelcome surprises as we’ve begun our home improvement projects, including the discovery of a main electrical cable with completely exposed wires due to rotted insulation. But I’m very grateful that we found out, and it’s now been replaced. That’s what happens when you start to pay attention to what’s been right under your nose all along.

So, I will be off next week, exploring the familiar with heightened focus, maybe taking some day trips, also. I hope you, too, are able to make the most of these last weeks of August in Covid Time. Back in September. 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: Debby Hudson