Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Falling Leaves

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See how efficient it is,
how it keeps its shape—
our century’s hatred.
How easily it vaults the tallest obstacles.
How rapidly it pounces, tracks us down.

from “Hatred” by Nobel laureate Wisława Szymborska

Cruel words, cruel acts eddy and swirl in every corner of our country since Election Day. I await our president-elect’s forceful denunciation of the hate speech and hateful acts being committed in his name. Two weeks and counting.

I take comfort in the many acts of kindness and caring by everyday Americans to censor those who feel emboldened to say and do what they have apparently been thinking all along. This gives me strength.

I feel wary. Will I be a target of derision, with my long pinched nose and tight mouth and awkward hands that slow me up at the checkout counter, while others wait? It is not a question that I have ever considered before. When I was grocery shopping on Friday afternoon, a man with tattooed arms hovered nearby while I rang up my items at the self-checkout lane. He kept moving closer, then stepping back, impatient. He said nothing. He did not make eye contact as I moved to the side to finish packing my bag. Before the election, I would have simply thought he was in a hurry. Now, I am not so sure. Or, perhaps, I am the one who is judging him unfairly.

Fears hover beneath the surface of normalcy. Thanksgiving is coming and I don’t feel celebratory. But I want to. I want to enjoy the holiday with my family. So I turn my focus to my many blessings: my loving husband and adult daughters, the warmth that greets me when I step inside our home from the approaching cold of winter, our quiet street, supportive friends and community, my clients who entrust me to promote their good works, the freedom to express my own truths through my writing, my art.

I am grateful for our great country, for all its fault lines and bitter conflicts. We can do better. We must.

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.

Image Credit: Timothy Meinberg

Words Matter

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I am struggling to know what is real.

A red and blue map lays brutally clear the evidence that we are a nation deeply divided. Half of us hear words of hate as a harbinger of authoritarian rule and civil rights destroyed; the other half hear the same words as the not-to-be-taken-seriously polemics of a pragmatic deal maker who will solve all our nations ills.

I await in a state of suspended animation.

Our president-elect appears as stunned as we are that he won. Commenting on nationwide protest marches, he has tweeted that he “loves the fact that the small groups of protesters last night have passion for our great country,” the morning after he described the same as “professional protesters, incited by the media.”

He has said in a Wall Street Journal report on Friday that, after listening to President Obama when they met on Thursday, he will consider retaining provisions of the Affordable Care Act that protect people like me with pre-existing conditions and keep adult children up to age 26 on their parents’ insurance. He has described Secretary Clinton, whom he demonized relentlessly and threatened to jail if he were elected, as “very strong” and “very smart” in a Sunday 60 Minutes interview. He has also repeated his plan to export or incarcerate undocumented immigrants “who are criminal and have criminal records” and build a wall with Mexico that could include “some fencing.” 

He has said many disparaging, divisive words over the course of this brutal, cynical election that he has repeated over and over, others that he has denied or reversed in the blink of an eye. Asked by the Wall Street Journal if he regretted any of his words during the campaign, he said, “No. I won.” Asked by Leslie Stahl on 60 Minutes about his response to the rash of hate crimes and speech spreading across the country, he said “Stop it.” The same day that the interview aired, he named Stephen Bannon, former head of alt-right Breitbart News, as his chief White House strategist. A sample headline from Breitbart, while still under Bannon’s leadership last December: “Why Equality and Diversity Departments Should Only Hire Rich, Straight White Men.”

I don’t know whom to believe.

My world is filled with conversations among friends, in person and in cyberspace, arguing, debating, finger-pointing, grieving, offering empathy and support, urging resistance, counseling calm. Some are profoundly, genuinely scared for their lives. Others express deep gratitude for the support they’ve received from friends and strangers, alike. Still others say to stop whining.

Lists swirl through the media of potential cabinet secretaries and key appointees, including names of oil company executives and climate change deniers. GOP leaders boast of using parliamentary maneuvers to avoid any effort at bipartisanship in pushing through their agenda. The president-elect reassures the president of South Korea that the U.S. will still support her nation, despite his campaign claims questioning that critical strategic alliance.

People leading the protests in cities across the nation criticize President Obama and Secretary Clinton for capitulating in their efforts to promote a smooth transition of power—but buried in an account of the protests in this Sunday’s New York Times is the statement that many of the protest leaders “either did not vote or chose a third party candidate in the general election.”

An essay by Teju Cole in this week’s New York Times Magazine cites Eugène Ionesco’s 1958 play, Rhinoceros, as a chilling reminder of the insidious nature of evil and our willingness to rationalize the collapse of civil society until it is too late.

Kate McKinnon, in a cream-colored pantsuit, plays the piano and sings the late, great Leonard Cohen’s Hallelujah in SNL’s cold open segment that brings me to tears. She ends her finest Hillary impersonation with the words, “I’m not giving up. And neither should you.”

Words matter. My words, yours, what we say to each other, how we listen. What I write.

Of troubled times, author Toni Morrison offered these powerful words more than a decade ago:

“This is precisely the time when artists go to work. There is no time for despair, no place for self-pity, no need for silence, no room for fear. We speak, we write, we do language. That is how civilizations heal.

“I know the world is bruised and bleeding, and though it is important not to ignore its pain, it is also critical to refuse to succumb to its malevolence. Like failure, chaos contains information that can lead to knowledge—even wisdom. Like art.”

Image: “Paris Society” (1925/1931/1947) by Max Beckmann, on display at The Metropolitan Museum of Art’s current exhibit, Max Beckmann in New York. Beckmann was a German painter whose works were banned by the Nazis as “degenerate.”

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.

Fitful

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As Election Day arrives, I have found it harder to sleep. So much is at stake. I’ve been plagued by a low-level headache that flits from temple to temple. I’m exhausted at night but can’t easily turn off my mind. Regardless of the outcome tonight, our country faces a very contentious future that will take a long, long time to heal. More stress is guaranteed.

7736889972_edcee6db5c_oThere is only one silver lining to this mess: I will finally get in shape. Why? Because I discovered last week that the one way I can get rid of my tension is to work out. Al and I at long last got back to the gym Thursday night. I walked a mile on the indoor track, rode 2.3 miles on the stationary bike and listened to a podcast that had nothing to do with politics. Voila! My mood improved. Nothing like putting one foot in front of the other or pedaling, pedaling, pedaling to push out the stress.

On Friday, Em got me away from the computer to take a half-hour walk around the neighborhood—something I have been neglecting recently as I’ve focused on work deadlines and read too many election analyses. On Saturday, we all joined Al’s brother and his extended family and friends for a three mile Boston VisionWalk in memory of Al’s nephew, who died all too young, two years ago. It was an uplifting way to get exercise and do some good in the world. I devoted Sunday and Monday to board meetings for The Good People Fund, which supports creative individuals who tackle hunger, poverty and other seemingly intractable social issues at the community level, with amazing, positive results. All of this was the best I could do to counter all the hate speech and negativity swirling around us. It helped me sleep a little better.

As I write, I have no idea how the election will turn out. I am afraid for our country. I am praying that sanity and compassion will prevail, that innuendoes and guilt-by-association will be debunked, that each of us will think beyond our own needs and concerns to do what is best for our society and nation as a whole.

And I will keep on walking, keep on walking, one foot in front of the other.

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.

Image Credit: Ryan McGilchrist

Flimsy by Design

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The sugar maples in our neighborhood have finally burst into flaming colors. They’re about a week behind schedule this year, slower to change due to warmer than normal temperatures.

Their brightness surprises, given the mild winter and dry summer. We’ve been at a Stage 3 Drought Emergency here in Central Massachusetts since early September, meaning no outdoor water use. Our reservoirs are at nearly half-capacity, and the city is buying water from Boston’s reservoir network to make up the difference.

img_2443But the trees have adjusted. Across the street from our home, our neighbor’s sugar maple has turned a brilliant gold. Others are bright orange, crimson, or my favorite—a mix of all three. We’ve been graced with another mild week, just right for taking a walk, scuffling through freshly fallen leaves, or sitting in our sukkah.

Our sukkah is a flimsy structure by design, with a bare wooden frame, sheets for walls and pine boughs for a roof, through which you can see the stars at night. During the weeklong Festival of Sukkot, which follows shortly after Yom Kippur, we eat our meals in the sukkah. In years past, when the girls were young, there was always a night when they’d sleep under the pine boughs with Al. (Too hard on my joints, and often too cold, to join them.)

I love to sit in our sukkah. The pine smells so lovely, like the middle of a forest, and the gourds we hang add a splash of fall colors and whimsy. There is something oddly reassuring about the sukkah’s flimsiness—a reminder that change, transition, temporality are the ultimate constants in life, that possessions don’t really matter all that much. Rather, what counts are the people we love who share our space, and the creative life force—for me, God—that nurtures and sustains us.   

I always find it fitting that Sukkot falls when the trees are turning in New England. How amazing that the transition from season to season, from vivid green to bare branches, is so stunningly beautiful. The leaves don’t simply shrivel up and drop to the ground as crumbled dust. They go out in a blaze of glory.

The prospect of change is so often frightening. What will we lose? How will we survive? Why must we give up the comfort of the familiar? Sitting in my sukkah, I try to remind myself that the only reality is the present moment, security is a state of mind, and transitions are opportunities to learn something new. However uncertain and troubling the future may seem today, I have the capacity to respond and adapt on my own terms.

And, oh, yes, change can be surprisingly beautiful, if you know where to look.

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.

Mending

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My grandmother Elli was an expert seamstress. She learned from her father, a Berlin fashion designer during the 1920s. When she came to visit us in the spring, she would help me make doll clothes. One particularly striking outfit was a black-and-white houndstooth check dress with hand-sewn, red rickrack. My dolls were quite stylish. When I sewed my own senior prom dress, Elli was there to teach me how to insert a prick-stitch zipper. The dress no longer fits, but it still hangs in the back of my closet.

img_2440When Elli died, I inherited her huge, multi-tiered wooden sewing box, which included, among other treasures, tin boxes full of buttons. Over the years, I accumulated my own stash, a source of delight for my daughters as I worked on sewing projects at the dining room table. Buttons would become tiny plates and food, matching and counting games.

The sewing box is battered, now, sitting in our basement family room. But it still contains  wonderful traces of my grandmother—spools of silk thread that must be at least a century old, tiny cardboard tubes wrapped with various dark shades of darning thread for mending socks, black hooks-and-eyes sewn to a card.

I never learned how to darn, and I can no longer sew on buttons by hand without great difficulty—too hard to hold the button in place and manipulate the needle and thread. So I delegate that task. But I like to repair clothes. It’s a way of conserving resources and fighting back against our throw-away economy. I tackle any mending project with my trusty Viking Husqvarna sewing machine, which I purchased about thirty years ago and has never failed me.

The other day, my eldest asked if I could mend a favorite sweater that had gotten snagged, causing a seam to unravel. Ideally, it should have been crocheted back together, but that was out of the question. I wasn’t sure if I could fix it, but I promised her I’d try.

From decades of sewing, especially when my hands were more nimble, I have accumulated a thread collection that rivals the one I inherited from my grandmother. Sure enough, I had the right maroon thread to match the sweater. I pinned the seam back together, carefully unrolling the edges to align without losing any more knit stitches. I set the machine for a narrow zig-zag, to secure the seam without losing stretch. And I slowly stitched away, forcing the knit fabric toward the feed-dog so the seam wouldn’t sag.

I didn’t know if my method worked until I finished the seam—but it did. The inside edge is not as neat as the original, but the outside looks perfectly fine. One sweater saved. A small victory in a world so far removed from Elli’s day, when mending was not only a practical matter of conserving scarce resources, but also an art form.

At a time when so much seems so easily torn asunder, a worthy pursuit.

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.