Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

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

· · 1 Comment

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.

Winter Blooms

· · 6 Comments

After a bitter cold week, it was a wonderful break to visit the Worcester Art Museum’s annual Flora in Winter show this weekend. Timing could not have been better, and the floral artworks, as well as the museum’s art collection, gave me a boost. I hope some of my favorites here brighten your day, 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.

Random Act of Kindness

· · 2 Comments

Last Friday, in-between a routine echocardiogram and an appointment with my rheumatologist at Boston Medical Center, I decided to get a bite to eat. It was around 11:00, not quite lunchtime, but I knew I wouldn’t get home until mid-afternoon. Better to tackle the hour-long drive and run errands on a full stomach than get worn out before I could sit down at my own kitchen table.

I found a nice local diner, just a short (very cold) walk from the BMC campus, warmed up with a cup of tea that steamed my glasses, and enjoyed a hearty brunch of scrambled eggs, an English muffin and home fries. The diner was cozy and crowded. I had never been there before.

There was ample time to walk back for my second appointment when I asked the waitress for my check. A few minutes later, she returned empty-handed. “Someone paid for your meal,” she said. “You don’t owe anything.”

“How is that possible?” I asked, astonished. “I don’t know anyone here!”

She shrugged and smiled and suggested that Santa had delivered a gift. I thanked her, and sat there, marveling. There was no indication that this generous soul had paid for everyone. Why single me out? Who could it be? Fortunately, I had some cash in my wallet, so I gave my waitress a good tip. It was the least I could think of in the moment.

Walking back to BMC in bright sunlight, I pondered what had just happen. I’d heard of gestures like this, certainly, but never been the beneficiary. The cynical voice in my head wondered if it was some kind of social psychology experiment, to see how people responded to such an anonymous gift. But it didn’t really matter. Someone chose to do me a kindness. How lovely! And it gave me a real boost that lasted all weekend.

As 2019 draws to a close, a year of so much dire news, it’s uplifting to remember that there are many good people out there, who never get headlines, ushering light into the world. With Hanukkah and Christmas coinciding this week, we can use all the light we can find—and bring to others.

In that spirit, whatever your tradition, best wishes to you and yours for the holidays!

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: Gaelle Marcel

Yellow Roses

· · 6 Comments

On Monday, Al and I celebrated our 35th wedding anniversary. Actually, we started celebrating over the weekend, with Shabbat blessings in synagogue, a great performance of Pulitzer-nominated The Wolves on Saturday night, delicious Sunday brunch at a local bakery cafe, followed by a tour of the stunning Bauhaus historic home of Walter Gropius and family, a quick visit to special exhibits that deserve more time at the Worcester Art Museum, watching a quirky, funny Albanian film called Two Fingers Honey, and dinner at a cozy neighborhood Italian restaurant. Plus a special dinner on our actual anniversary Monday night. And we have still more plans for next weekend. Nothing like playing tourist in your own backyard with your best friend.

Indeed, we’ve now lived more than half of our lives together—which is astonishing, when I stop to think about it.

How can you really know, when you first marry, whether you’ll be able to keep your relationship fun and surprising, let alone weather all of life’s inevitable storms, and discover that your love for one another will continue to strengthen and flourish?  Honestly, you can’t. Intuition, experience, mutual attraction, a pinch of luck—all are factors, but not determinants. I just know that the first time Al showed up on my doorstep, he surprised me with a dozen yellow tea roses. No one had ever done that before. And the first time he gave me one of his big bear hugs, I felt safe and peaceful.

All these years since, through many, many challenges with health, family, jobs, and more, he’s remained that same steady source of calm, security, optimism, and wonderment. He has the most generous heart of anyone I have ever met, infinite patience for all the mishegas of my scleroderma, and an endearing curiosity and playfulness that can push me out of my comfort zone, but often for the better. Even when he drives me crazy, and I, him, we always manage to work it through and come out stronger.

We’re a lot grayer than those two young adults who smile so blissfully in our wedding portrait. It was good that we didn’t know what lay ahead, starting with the discovery, shortly after returning from our Cape Cod honeymoon, that I had a serious autoimmune disease, with scleroderma being the ultimate diagnosis three years later. All that seems ancient history, now.

The best definition I’ve ever heard of a good marriage or partnership is to be each other’s oasis. Looking back over the past 35 years, I think we’re there. Whatever comes next, I am most grateful.

P.S. This marks my 400th blog post on Living with Scleroderma. How fitting for this to be the subject! To all of you, Dear Readers, thanks for following along.

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.

Stone Walls

· · Leave a Comment

I’m posting a day late, again, because of Jewish holidays, again—this time, the Festival of Sukkot, which began on a Monday and Tuesday this year. Al always builds our sukkah on our back deck. It’s a three-sided booth with pine boughs for a roof, where we eat our meals and visit with friends during the holiday. You have to be able to see the stars through the roof at night. Among many concepts, Sukkot is about recognizing the transience of life, our connection to the natural world, and gratitude.

On both afternoons, in sunny fall weather, we took long walks in the woods, savoring the light illuminating brilliant foliage as maples and birches flamed red and orange and gold. As we walked trails, leaves floated down like so many graceful hang gliders, en route to the forest floor.

The air smelled moist and rich. I picked my way carefully over gnarled tree roots and rocks, along pine-needle-carpeted trails that wound around old stone walls. Ever a feature of New England forests, these tumbled grids mark long abandoned pastures, hard to imagine now in such a well-established woods. But they got me to thinking about walls, so intensely referenced these days.

Which led me to reread Robert Frost’s Mending Wall, a poem with timeless resonance. A few verses (you can read the full poem here):

Something there is that doesn’t love a wall,
That sends the frozen-ground-swell under it,
And spills the upper boulders in the sun;
And makes gaps even two can pass abreast. . . .

I let my neighbor know beyond the hill;
And on a day we meet to walk the line
And set the wall between us once again.
We keep the wall between us as we go. . . .

One on a side. It comes to little more:
There where it is we do not need the wall:
He is all pine and I am apple orchard.
My apple trees will never get across
And eat the cones under his pines, I tell him.
He only says, ‘Good fences make good neighbors.’ . . .

Before I built a wall I’d ask to know
What I was walling in or walling out,
And to whom I was like to give offense.
Something there is that doesn’t love a wall,
That wants it down. I could say ‘Elves’ to him,
But it’s not elves exactly, and I’d rather
He said it for himself. . . . .

The stone walls we passed in the woods, what was left of them, were dark as the surrounding trees, speckled with golden leaves. No one has mended them for at least a century, maybe more. And no one has minded. What once was essential matters no more. Unseen, leaves drift to the forest floor.

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.