Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

May We Be Healed

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May I be healed.
May you be healed.
May we be healed.

Years ago, I learned this meditation. It’s more resonant now than ever. As I write, according to the Johns Hopkins COVID-19 dashboard, there are 35,272,679 souls around the globe who are infected with COVID-19. Of those individuals, each grappling with the fear and suffering of this insidious virus, are 7,426,686 people here in the U.S., including the president. Worldwide, 1,038,307 people have died from Covid and its complications; 209,857 were Americans. All, with their own hopes, families, dreams.

By the time you read this, the pandemic will have claimed more victims.

May I be free of suffering.
May you be free of suffering.
May we be free of suffering.

We will never know how many lives would have been saved it everyone had complied with social distancing and wearing masks in the early days of the pandemic. I have seen estimates as high as 100,000 lives. Projections by the University of Washington’s Institute for Health Metrics and Evaluation (IHME) indicate that more than 363,000 Americans will have died from Covid by January 1, 2021, if we continue on our current trajectory. With universal masking, the model projects 277,000 total deaths. That’s still far too many. But 83,000 lives could be saved.

Think about it. By simply wearing masks, we could prevent the equivalent of 9/11 happening every day from now until the November 3rd election.

May I be full of self-compassion.
May you be full of self-compassion.
May we be full of self-compassion.

I wish this disease on no one. If any good comes of the president’s Covid infection—and the infection of so many in his orbit—I hope it will be a profound lesson in the importance of wearing masks in public. I fervently wish everyone would think beyond themselves and commit to the greater good of the community at large. Our partisan divide is now deadly, with masks or masklessness reduced to symbols of party affiliation. Enough, already. This past weekend’s news is the clearest evidence, yet (as if we needed any more) that large gatherings without masks, particularly indoors, will increase the risk of contracting Covid.

We need to take care of ourselves and each other. It’s scary enough, at the first sign of the slightest congestion, or cough, or sneeze, to wonder and worry that this may not be a simple cold, but Covid. All the more so for those of us with chronic auto-immune diseases and other serious medical conditions. Public masking is imperative.

So is voting. Our health as a people and a nation and a planet are all on the ballot this November. Make your voice heard.

May I be healed.
May you be healed.
May we be healed.

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: Jay Castor

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.

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.

66

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Celebrating my birthday this past weekend, in the midst of a pandemic, was different, to say the least. Not only were we stuck at home, but also it snowed. In April. I cannot recall this ever happening. Cold, yes. Snow, no.

So, I said to Al, “Let’s build a snowman!” He was surprised, because I never suggest anything that could make my hands cold, but he was also an enthusiastic participant.

When I was a kid, I loved making snowmen. I would stay outside in our front yard, rolling each ball of snow, arranging and decorating, until I was frozen myself. Back then, I didn’t care. I have a dim memory of doing this late one afternoon, the snow tinted blue as darkness fell, mittened fingers totally numb, but still feeling joyful in the act of creating.

Of course, the snow has to be just the right consistency for construction purposes, and we were in luck. Big, fat, pasty flakes had fallen all morning, a few inches worth, the kind of wet snow that gloms together into heavy blobs when you scoop up a handful. We headed out the front door and got to work.

With a shovel, Al created a mound for the base. We slapped on more snow globs to round it out a bit, and then I rolled two very heavy balls for the middle and head (needed Al’s help to stack them). We added stones for eyes and buttons. I found a couple of twigs from a fallen tree branch (very windy last week) for arms. Al added what was left of our horseradish from Passover for a nose, and contributed an old baseball cap. Together, we secured the finishing touch—a green bandana for a face mask. And so, in about twenty minutes, “Covie” was complete.

As we worked, a few neighbors walked by with their dog and voiced their approval. I took Covie’s portrait on my phone and headed inside. My mittens were soaked, just like that day long ago, and my fingers icy, but it was worth it.

Other birthday activities included reading a novel, listening to an inspiring podcast, enjoying birthday greetings from friends and family, catching up with my sister on the phone. In the afternoon, we had a Zoom party with my daughters, complete with a cake baked by Al, and an online card game that kept us laughing for a couple of hours. In the evening, we marked the occasion by making contributions to a variety of non-profits that are helping during the pandemic. This felt good. We capped off the day watching a movie online.

Throughout, I was in an upbeat mood. (This was helped by not reading any news.) For a cooped-up birthday during the scariest experience of my 66 years, it was lovely, memorable, and a good lesson in how much each moment is shaped by how we decide to approach it.

Now, if only the pandemic could end as quickly as Covie melted . . .

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.

Mask-maker, Mask-maker, Make Me a Mask

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More than half-way through Passover now, I’m finding the holiday’s food and kitchen restrictions (no leavening, separate dishes and utensils) a fitting metaphor for our new reality. That, and the spread of matzah crumbs throughout our home. I’m also finding the rituals and rules about what and how to cook strangely comforting. Having our mini Seder last Wednesday night via Zoom with two dozen family and friends from across the country was wonderfully uplifting. Sticking with our Passover observance feels like an act of defiance in the face of this pandemic, that it can’t uproot everything we hold dear.

But there is still a lot to contend with, of course. Here in Massachusetts, we are being told to wear fabric face masks when going anywhere that makes physical distancing difficult, like grocery shopping. So, on Sunday, I pulled out my trusty 35-year-old Viking sewing machine and experimented with making masks out of old pillow cases.

I still love sewing, but it has become much more challenging since I had my hand surgery several years ago. Tweezers are an essential tool for threading the needle. I have to constantly be mindful not to reach quickly as I adjust the sewing foot, thread the bobbin or change stitch settings, or I’ll mash what’s left of my fingertips on metal. Then there’s the nuisance of cut threads sticking to my bandages.

Nevertheless, I persisted, using a pattern I’d found online, one magenta-and-pink and one cobalt-blue pillow case, and a few pieces of quarter-inch elastic from my five-decades-old sewing stash. I cut out enough fabric for several masks, but only finished two—in part, because I skillfully managed to sew the second one together wrong side out and had to pull all the stitches, a real challenge for my hands. I made an opening in the back for an insert. From what I’ve read online, coffee filters are considered one of the best options.

Along the way, I discovered a couple of mistakes in the directions. The biggest issue is how long to make the elastic loops to go over ears. The pattern said seven inches, which seems to be standard advice, but that’s way too big for my narrow face. So, a word to the wise: If you decide to sew your own mask, plan on the first one being a prototype that needs adjusting.

Here is a good article from The New York Times that includes everything you need to knows about wearing and making your own mask.

I hope, Dear Reader, that whatever your circumstance, whatever holiday you may have been celebrating or will be, soon, that you are staying safe and well. And if you can’t sew, here’s how to make a mask from a teeshirt that requires no stitching.

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.