Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

And Then the Clouds Lifted

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Sunday was my 67th birthday—or, as my eldest put it, the 33rd anniversary of my 34th. Sixty-seven doesn’t seem old anymore. While my body certainly doesn’t work as well as it once did, pre-scleroderma, and my memory is no longer as sharp, I don’t feel old. Wiser, I hope. Seasoned, certainly.

To celebrate that milestone, and the fact that both Al and I are now fully immunized against Covid (at least the original version), we spent the weekend in the White Mountains of New Hampshire. Decades ago, when we were first married, and later when our daughters were very young, we used to camp there for our summer vacation. I haven’t been back, since.

My inspiration for the trip was to see the stars from the Kancamangus Highway, which runs through the White Mountain National Forest. There are no interfering lights at night, and I can still recall the spectacular view from a visit more than 30 years ago. The weather, however, had other plans. It remained overcast throughout our trip, the sun finally breaking through on Sunday afternoon as we drove home.

But the day’s diffuse light cast its own spell, subtly revealing details otherwise missed. From Laconia’s lake shores to the Lincoln Trailhead in the White Mountain National Forest, from the Cog Rail part-way up Mount Washington to the Basin off the Franconia Notch Parkway, we immersed in rejuvenating beauty. As I reconciled myself to a birthday mountainside view shrouded in mist, the clouds suddenly lifted and we could see 80 miles. The perfect gift, and metaphor, after a long, long year.

Enjoy . . .

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.

Unfurling

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This past weekend, pastels proliferated. The temperature soared to mid 70s F, and Nature saluted with pink cherry blossoms and lemony forsythias, lavender violets and purple hyacinths. Within a few hours, nascent, chartreuse leaves unfurled to greet the sun. Glorious.

I’ve always loved spring in New England, when it finally arrives. Even as temperatures stutter for a few weeks in April, sometimes into May, the longer daylight hours and luminous garden palette lift my spirits. Watching the tree canopy expand each day never ceases to fascinate. Even the yellow pollen that will soon dust car windshields is a reminder of renewal.

All the more so as we emerge from Covid, step by cautious step. With vaccinations increasing every day here in the U.S., I’m beginning to feel my optimism reviving, too.

I got a real boost last Tuesday, the day I was fully immunized, when I finally got my hair cut again after a four month hiatus waiting to be vaccinated. It had definitely gone wild. Every morning, when I looked in the mirror, I was reminded of Albert Einstein. But given that my hair was longer than it’s been in decades, I decided to ask my stylist to shape it a bit fuller this time. After all, might as well make the most of it.

She did. I was so happy when I left the salon, I felt like a new woman. That mood carried me for the rest of the week and still lingers. Carpe diem.

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.

Turtle Steps

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I had to take myself by the hand to get outside on Monday afternoon. Not because it wasn’t sunny, because it was. Or really too cold, because it was 57°F, though there was a brisk breeze. Or same-old-same-old, because there was plenty to see—daffodils, crocuses, even some hyacinths in bloom; the crimson and chartreuse hint of new foliage on street maples; our neighbor’s fairy garden, which changes themes every few weeks. This afternoon, it featured painted eggs encircled by multi-colored pebbles.

No, my resistance was mainly to the idea of just getting up out of my chair and stepping out of my nice, warm house. Even as I am officially two weeks past my second Moderna vaccination as of Tuesday midday, it’s hard to shake my Covid habits of seclusion.

On Sunday, Al and I took a hike at a local state park, and I realized that it had been weeks since we’d gone out in the woods together. It’s been too cold or I’ve been too tired or just not inspired. As I walked around our neighborhood on Monday, it suddenly struck me that this was the first winter in decades that I have not put snow tires on my car. I simply haven’t needed them, because I haven’t been driving much at all. Introvert that I am, I’ve managed just fine working at home, as I have for the past decade, Zooming only online, and otherwise slowing way down when it comes to socializing.

But now, with spring and vaccines and longer daylight once again, getting out seems more possible. We have a weekend getaway planned for my birthday soon. I’m starting to daydream about more extensive travel in the fall, when we know more about variants and how long the vaccines protect us.

At the same time, I find myself hesitating. I’ve been living in my turtle shell for so many months, even with sporadic, small outings to see my doctors in person, or for occasional errands or hikes, that the idea of actually going out daily, like I used to, seems a bit intimidating. Will it really be safe? Do I want to expend all that energy running around again?

Just as I had to acclimate to confinement, I now have to re-acclimate to getting out in public. It will take me some time and practice. And experience, poking out my head, discovering that I can actually stay healthy with more exposure to more people, that I can put up with masking for however long it takes, and that there is still much joy to be found in our troubled, troubled world.

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: Joshua J. Cotten

Prepping

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Today I get my second Moderna dose. On Monday, I tried to remember to keep drinking fluids, which is supposed to ease side effects. We shall see.

I’ve also been prepping for the aftermath. Friends and family who’ve had the Moderna vaccine report a whole range of reactions, from some arm pain to brain fog to extreme fatigue to headaches to fever, lasting a day or so. I’ve cleared my calendar for Wednesday, hoping for the best but leaving space and time to deal with a stronger reaction. After my first dose, I was very tired for several hours after I drove home from Boston. We shall see.

Then there’s Passover prep. The first seder is Saturday night this year, and there’s still a lot to do between now and then. We’ve started our house cleaning, shopped for dry goods and dairy foods, and planned menus for the week of Passover. Al will finish the bulk of the cleaning this week and the rest of the shopping for perishables, but I still have client work pending and other to-dos to complete.

I’ve revised the Haggadah that I wrote last year, and we’re getting organized to have a Zoom mini seder with family on the first night. But there is still more cleaning and all the cooking to do. So I’m hoping that my second dose won’t throw a monkey wrench into the works. We shall see.

How is this week before Passover different from all other weeks before Passover? We shall see.

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: Aron Visuals

Mud Puddles

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I read somewhere that March 2020 came in like a lion and stayed. So here we are, a very long and difficult year later, and the wind is gusting outside. I take a walk on a late Monday afternoon, before the sun sets, and the chill catches me by surprise. But I keep on walking. My flannel winter mask helps to warm the air I breathe.

When there’s no one else nearby, I lower my mask to inhale more freely. As soon as I see or hear someone approaching, I raise it again. I’ve gotten quite adept at moving to the opposite side of the street as another walker appears along my path. It’s all part of our learned choreography in Covid Time.

Most people I pass wear masks, too. And most everyone waves or says hello—more so than in the Before Time, when we took passersby for granted. Now, it feels all the more important to acknowledge each other when we can see only eyes.

Where snow is finally receding, mud puddles glisten in the late afternoon light. The ground looks like chocolate pudding. I inhale the earthy scent and notice a few matted blades of green where lawns have emerged from beneath their white blankets. Mourning doves coo as shadows grow long.

It’s after five o’clock when I return home, grateful for a warm kitchen, but glad that I stretched my legs and worked out the strain in my lower back from sitting too long at my computer. The sun still illuminates scudding clouds with a golden glow. I marvel that I can walk this late in daylight.

Spring is less than three weeks away, March 20. Three days later, I get my second Moderna vaccine. Then comes Passover. I mark time with ancient rituals, miraculous milestones, and the spinning of the Earth.

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: Jock Ocularic