Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Stone Walls

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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.

Mediterranean Musings

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No doubt about it. The weather here in New England is getting colder. My blue fingers bear witness to fall, even as the trees are only just turning.

Sigh. I keep thinking of our wonderful vacation this summer in Greece, and especially our days on Crete. Hot and sunny days, jumping waves in the ocean—and some of the best food I have ever eaten. Well, I can’t fly back to Crete anytime soon, much as I would like, but I can replicate the flavors of that stunning island.

So, for Rosh Hashanah last week, I used a cookbook of Crete cuisine for our holiday meal. Among the dishes were homemade stuffed grape leaves, something I never would have thought of making before. Fortunately, our younger daughter was home for the weekend, and her very nimble fingers came in quite handy for rolling several dozen of the appetizers.

The recipe is actually quite simple. The filling is a combination of rice, lemon juice, olive oil, mint, dill, and onion; you can buy grape leaves by the jar and save the step of prepping them. Lots of recipes out there. The one we followed needed some adjustment in proportions and used uncooked rice (which cooks after the leaves are stuffed), but I’ve seen other recipes that use cooked or partially-cooked rice. Once you make the filling, you wrap a spoonful in each grape leaf, kind of like a mini-burrito. Then they all go in the bottom of a large pot, covered with water and a plate to keep them from floating. Twenty minutes later, they’re done. And delicious, much softer, more subtly flavored than the store-bought kind.

I was actually able to wrap one myself, despite wearing annoying latex gloves (an essential so I don’t infect my fingers while cooking), with floppy fingers that are longer than my partially amputated tips. But I’m going to try it again on my own sometime, because I want to see if I can really do it, and they make a great lunch. I still have a few left from last week, and they keep well in the fridge.

Best of all, when I eat stuffed grape leaves (with kalamata olives, of course, a perennial favorite of mine), I can better remember the blue Mediterranean skies and warm waves, the pleasure of a hot-but-not-too-hot day, our wonderful B&B hosts, and the joy of savoring every moment. That’s the best antidote to fall’s onset that I can think of.

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.

Summer’s End

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Here in New England, it’s officially fall. Time, alas, to let go of my favorite season. But we’ve been blessed with summer weather these past few days, a parting gift. Al and I took advantage of the 80s temps and sunny skies to enjoy a long afternoon hike on the Central Massachusetts Rail Trail.

It was a fitting way to savor the season’s end—as well as a meaningful way to appreciate the beauty in our own backyard, especially on a weekend marked by worldwide demonstrations to protest inaction on climate change and the deeply disquieting news that a third of North America’s birds have vanished since 1970, due to loss of habitat, declining insect populations, pesticides, and predators (read, cats).

The Rail Trail includes the ruins of a former woolen factory, its tumbled stone foundations enveloped by encroaching forest. A rusted turbine sits in a sun dappled clearing like an abandoned sculpture. The remaining wall of a dam presides over goldenrod. Nature has its ways, both subtle and severe, of reminding us that it will always have the last word. It’s long past time that we start listening, hard.

Please walk with me . . .

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.

One Small Step

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I’ve written a number of posts over the years about decluttering—my office, my home, my head. But this past Sunday, I actually did something about it. I Marie Kondoed my closet.

For those who may not have heard of the cultural phenom, Marie Kondo, she is the bestselling author of The Life-changing Magic of Tidying Up and star of a Netflix series, in which she helps people with far too much stuff to pare down to what they really love and need. There are plenty of memes and jokes and cynicism about her key question for each item, “Does it spark joy?” But after my younger daughter encouraged me to watch her show, it only took a few episodes to convince me that Marie Kondo is onto something simple and seemingly obvious, but profound when you put it into practice. When you clear out the clutter, you make room in your mind and life for what truly matters. That, and those of us living in the richest country in the world have far more stuff than we will ever really need in our lifetimes.

It took me about three hours to go through all my clothes. Kondo’s method is to pile everything on your bed and assess it piece by piece. Keep what gives your pleasure and give away the rest, with appreciation for the role it played in your life. Some of the decisions were easy. There were clothes I haven’t touched in years taking up space; clothes that no longer fit; and clothes that I really didn’t like but had kept because they might come in handy some day.

There were also clothes that I really love, and kept. And there were some items, particularly some of my warmer winter clothes, that I’m a bit tired of but can’t afford to replace quite yet, so I hung onto them out of pragmatism. The best finds were two timeless evening dresses that I had worn for each of my daughter’s bat mitzvah celebrations—that still fit. This was quite the miracle, especially because I love those dresses, not only for their style, but also for the memories.

Then there were the shoes. I ended up bagging about a dozen pairs, acquired over the years. Shoe shopping is always a struggle, not only to find the right fit in the store, but also to find shoes that won’t trigger the neuropathy in my feet, due to thinned fat pads from scleroderma. This is an attribute that I can only determine after wearing the shoes for a while, and since most stores only let you try them out around the house, I can’t always assess them until I wear them outside. If they don’t work out, it’s too late. Someone will benefit from my mistakes.

In the end, I brought six garbage bags of clothes to Goodwill, plus a shopping bag full of hangers. It felt good. I gave away some nice things that I hope many someones out there will enjoy. My closet is organized, and I don’t have to struggle to pull a hanger from an overcrowded rod, or dig through piles of unworn sweaters on the shelf. I can see everything, and everything is in its place. It looks pretty, inviting.

Best of all, I feel like I’ve made room in my brain. It’s an aaahhh sensation, like there’s more space to breathe. Less clutter means clearer focus.

Now, it’s time to tackle my office.

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.

View from the Acropolis

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Two days ago, I awoke at five to the sound of roosters crowing. It was our last day of vacation in Greece, at our last destination, the isle of Hydra (the ‘h’ is silent), and time to finish packing before our early morning ferry back to Athens. We had made a grand tour over two weeks, starting in the nation’s capital, then on to the island of Crete, then north to Thessaloniki, back down the peninsula to Delphi, landing on this Aegean jewel for our final weekend.

Neither Al nor I had ever been to Greece. I’d always wanted to see the Parthenon, the ruins of the ancient temple to the goddess Athena, atop the Acropolis of Athens. More than that, though, now seemed the appropriate time to visit the birthplace of democracy. With so much at stake here and abroad, I needed perspective and inspiration.

We found both. As one of our tour guides explained, democracy only succeeds when everyone participates. When citizens choose not to vote, not to be invested in the business of government, that is when demagogues step in to fill the vacuum. In fact, the ancient Greeks had a word for people who preferred not to be involved in public affairs: the transliteration is idiotes, which is the etymological root of idiot.

Make of that what you will. For me, walking through ancient ruins, contemplating the great civilizations that have come and gone, it became clear as the crystal turquoise waters of this stunningly beautiful country that we can’t take anything for granted. It’s up to each and every one of us to ensure that our democracy survives and thrives in these very challenging times.

Here are a few of my favorite images from our travels. 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.