Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Are We There, Yet?

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Yesterday I wrote to our Air BnB host that we were cancelling our June weekend trip to Block Island. I’d been looking forward to this family get-together for months at the perfect summer home in a remote part of our favorite place off the Rhode Island coast. But the state requires 14-day self-quarantine for travelers from out-of-state, the virus is still surging here in Massachusetts, and I cannot imagine that, even if restrictions are lifted in a month, it will really be safe to go there on the ferry.

Call me risk averse. I consider it an asset, these days. So far, as I write, I’m very grateful that our family remains healthy and safe in our respective homes. Others in our friendship circle are not so fortunate, which is both deeply concerning for their well-being and scary. I feel the virus encroaching and a need to be ever more vigilant.

Confinement, so necessary, is taking its toll. Some days it doesn’t bother me, and others, it feels like a blue funk that I can’t shake. Obviously, this is nothing compared to the terrible struggles others are facing, fighting the virus itself and the economic hardship it has wrought. But the feeling is still real, and, as Brené Brown points out in this episode of her thoughtful “Unlocking Us” podcast, denying your feelings because others are suffering more doesn’t really help anyone. Our capacity for empathy and supporting others is intricately linked to our capacity for self-care. So, I’m trying to give myself some space to feel what I’m feeling, without getting sucked into a black hole.

Connecting with family and friends certainly helps, but I am hitting my limit with Zoom get-togethers. I find them exhausting when there are a lot of people involved.  “Zoom fatigue” or “Zoom burnout” is real, a phenomenon triggered by the inability to read non-verbal cues on a video chat, as well as the need to be “on” for the whole call. I have used Zoom for years for business, and it’s a great tool that makes me feel closer to my clients. It saved our Passover seder and has enabled us to catch up with family long-distance. But I’m finding that I need to pace online group get-togethers so I don’t feel so drained. One-on-one is easier, and not an issue.

Getting outside whenever the weather is good is essential for me. We had another gorgeous weekend, and Al and I took advantage with another hike, this time to Purgatory Chasm State Reservation not far from home, so named because of its huge, tumbled boulders and rocky trails. I found the going tougher, and there were more hikers, so it was less relaxing. But it was still good to get out in the woods again (albeit necessary, now, to start checking for deer ticks).

Making stuff helps, too. I sewed three more masks on Sunday out of tea towels. Cleaning the house is a meditation, making order out of chaos. Keeping up with my German homework taps a completely different part of my brain and gives me a sense of accomplishment as I learn and remember more.

Most of all, however, what’s keeping me sane is writing. I finished the third draft of my novel last week (more rounds to go, but a milestone, nonetheless), and started a new short story. The act of writing completely transports me to a mental space where time dissolves, I’m  absorbed in my imagination and words, and I can call all the shots.

Real life is not so accommodating. “We’re all in this together” is beginning to wear thin, but is all the more true. I’m trying to do my part, even as I yearn for normal, whatever that will mean when we are truly able to resume work and socializing in person. And so I sit here and write to you, Dear Reader, and hope that you have found relief from your own cabin fever that is fulfilling, safe, and considerate of all those around you. We have a very long way to go and need all the resilience we can muster to get there.

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

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.

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.

Order Out of Chaos

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As the pandemic surge approaches, we have been preparing for Passover—a deep and bitter irony, given the role that the Ten Plagues play in the Exodus story, the Seder’s focal point. Over the weekend, I wrote a condensed version of the Passover narrative that we’ll share with family and friends across the country Wednesday night via Zoom, in place of our traditional festive gathering. Certainly not the same as being together, but making the best of the situation.

And so, we’ve been cleaning the house, Al and I. We had to pause our biweekly cleaning service, given the risks of sharing unwanted germs, and sent them a check to help tide them over. Al’s done the heavy work, and I’m in charge of dusting. So long as I’m very careful and wear cotton gloves, I can avoid damaging my fingers. But I’m slow, as a result, and we have a lot of tchatchkies.

Still, there is something about revisiting all those little statues and knickknacks, remembering where we got them and when, and arranging them exactly as I want. The house looks clean and orderly, more so than usual, because we’re the ones doing the work and paying attention to dust hiding in nooks and crannies. We finally put away all the books that had been cluttering the living room coffee table, leaving a manageable stack to be read. I shipped a box full of electronic cords, cables, CDs, and DVDs to a recycling center in Washington State that was still taking donations.

It feels good to get ready for the holiday, not the usual dreaded chore. Life is so strange right now, seemingly normal in some ways and totally upside down in others. Cleaning and organizing our home is one way to regain at least some sense of control, and keeping our religious traditions means that COVID-19 is not in charge of what we do. It’s also a wonderful way to connect with those we love, even if we can’t see them in person this year.

All this is all the more important as the number of cases here in Massachusetts increases exponentially. Our city is well prepared, and the Commonwealth is undertaking a first-in-the-nation initiative with the global NGO Partners in Health to track contacts of people who test positive for COVID-19, in an effort to detect infection hot spots and contain the virus. I find this reassuring.

And yet. A couple of weeks ago, when I took my walk around the neighborhood, I overheard folks chatting about someone who knew someone who got the virus when their kid came home from Spain. A few days later, I passed by a group discussing personal experience with having had it and gotten over it (fortunately for the couple, it sounded as if they’d had a mild case). Yesterday, on my walk, for the first time I saw an ambulance outside someone’s house. I haven’t heard sirens in the neighborhood, but I know that’s inevitable.

The weather as I write is sunny and mild. Forsythias are blooming, leaves on the trees are just barely visible, and miniature daffodils brighten our rock garden with a splash of gold. Pandemic or not, spring is here. For that, for every morning that I awake with an easy, deep breath and know my family and friends are well, I am grateful. I hope you are safe and well, 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.