Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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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.

It’s Always Sunny in Philadelphia

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This past weekend, I flew to Philadelphia to spend a long-planned weekend with my younger daughter. We had originally intended to enjoy the Art Museum, dining out, and some quality mother-daughter time, to mark her birthday next week. I was also going as her support for a medical diagnostic procedure on Monday. But with the intensifying spread of COVID-19, the decision to travel was complex.

Driving to Philly from our home takes a good six hours. The flight takes under an hour from our local airport, which is a ten minute drive from our house. Under normal circumstances, it’s a no-brainer.

But flying is now fraught with worries about the risks of picking up the coronavirus in public spaces—and spreading it to others. My daughter was quite concerned for my health and willing to postpone my visit. I, however, was not willing to give up so easily.

Ultimately, after conferring with my long-time rheumatologist about my risks of dealing with the virus, and given that I have no coronavirus symptoms, nor have I knowingly come in contact with anyone who has traveled abroad to hot spots, I decided that I would make the trip. I took extra precautions, wearing latex gloves in the airport and on the plane, wiping down my seat belt, arm rests and head rest with disinfectants, not using the tray table. The flight is on a small American Eagle jet, and it was only a third full both ways, so no trouble staying three to six feet away from fellow passengers. No one was notably coughing.

I kept a wide berth from other travelers as I walked through and waited in airports. My daughter picked me up in Philly on Friday, and I sat a safe distance from my congenial Lyft driver on the way to the airport Monday afternoon. (I gave him a good tip, because business is understandably slow.) Al was waiting for me when my flight arrived back home.

Over the weekend, we had a very meaningful mother-daughter visit, with some important conversations about what’s happening and what could happen, a talk that could only occur in person. We ate in, took a sunny walk around the Art Museum (which was closed) and along part of the Schuylkill River Trail, did some sewing and crafts, and binge-watched Netflix series. I took her to her medical appointment, and, thankfully, all went well. Given all the uncertainty about travel in coming weeks and months, it was all the more important to visit now, when it was still possible.

Back here in Massachusetts, schools and universities are closed, restaurants and bars shuttered except for take out, and many people are now telecommuting. Public gatherings are restricted to no more than 25 people. My synagogue is closed, though conducting daily minyan via Zoom. My dentist is closed except for emergencies over the next few weeks. My weaving studio is on hiatus. My German classes are canceled this week and shifting to online next week. My gym is closed. Grocery stores and pharmacies are exempt from these restrictions, so far. Al’s work has shifted to a hybrid of work-from-home and in-person visits to his social work clients. I am well-accustomed to working from home, so my daytime schedule is status quo. Others are not so fortunate.

I’m sure that you, Dear Reader, are experiencing similar disruptions. None of us knows what is next. All I know is that I’m glad I went to see my daughter while I still could, and I’m glad I’m back home.

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.