Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Words Matter

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beckmann

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

Signed, Sealed, Delivered

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On Halloween afternoon, I cast my vote for President of the United States. Given how frightening this election campaign has been, the timing was somehow appropriate. Yet, I’m pleased to report, no ghosts showed up to cast bogus ballots.

img_2445Here in Massachusetts, we have open voting for two weeks prior to Election Day. In my city, the polling place rotates among five locations on weekdays, with all five sites open on weekends. The hours are extensive and convenient.

When I arrived around 3 o’clock at the Monday polling site, a Unitarian Universalist Church that’s a short drive from home, the parking lot was full. A steady stream of voters flowed in and out of the modest brick building—older couples, middle-aged singles, parents with kids.

On the afternoon of trick-or-treating, with parties and last minute costumes and candy to buy, you’d think people would be otherwise pre-occupied. But any concerns about voters being discouraged by fears of rigged elections, foregone outcomes or voter intimidation (amazing to think I am even writing these words) certainly were not relevant here.

Instead, the mood was sober and focused. Few people spoke in line (only about 10 people ahead of me when I arrived, and the wait was maybe five minutes). One woman behind me was still trying to make up her mind. “This has been the most confusing election, and it just seems to get worse,” she said. The man behind her simply answered, “Just vote your heart.”

Four volunteers sat behind a long table, each using a computer tablet to access voter registration data. Over and over, they explained the same instructions, once the voter gave name, address and confirmed birthdate, received the proper precinct ballot, then signed the ballot envelope: There were two paper ballots, one double-sided, be sure to turn it over to vote on all the ballot questions, re-fold when done, place in the envelope, seal and hand it to the police officer at the ballot box. I give these people a lot of credit—efficient, professional, clear, patient. No nonsense.

I carried my envelope to the voting booth—read and reread everything to be sure I understood what I was doing, reviewed it after marking my choices (what if I made a mistake?), then sealed it up and handed it to the police officer, who checked that it was signed and sealed before slipping it into the red-white-and-blue wooden ballot box.

By the door, a man in a black watch cap was sitting, arms folded on the back of a chair, eyeing the line of voters. One of the volunteers walked up to him. “Are you an observer?” she asked with a polite smile. I think he shook his head and moved on, but I was already on my way out. Whatever he was doing, there was no hassle. As I left, the line stretched down the short corridor to the entry door, and the steady stream of voters continued. No one was arguing. No one was shouting insults. No one was even holding signs for one candidate or the other across the street.

Just the peaceful, serious, fair and open business of exercising the most precious right we have as U.S. citizens. I felt good, walking to my car. This is the way it’s supposed to work.

Whether you can vote early or only on Election Day—vote your heart, vote your mind, vote your conscience. This year, of all years, just be sure to vote.

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.

Come Fly with Me

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There was a time when air travel used to be fun—glamorous, even. The ability to arrive somewhere far away in a few hours was still novel when I was growing up. Flying was a special treat, comfortable, efficient, with plenty to eat and room to relax.

stocksnap_ev0wq57le6No more. Post 9/11, in the era of long security lines and maximizing revenues at the expense of travelers, flying—especially domestic routes—is an ordeal to be endured.

Last week I made a short trip to Chicago on business and was struck, once again, by how unpleasant flying has become. The only plus: on both legs, I had the good fortune of TSA Pre-Check; hence, less fumbling with my bags and belongings, which spared my hands a bit of strain. After that, however, things went downhill.

My trip from Boston started with a 15 minute delay, as we waited for our flight attendants to disembark from another “live flight” (the lingo is remarkable, in itself—what was the alternative, to arrive on a zombie flight?).

Just as the crew finally filed through our gate (without taking a break—they appeared and sounded bedraggled) and it looked like we would be boarding momentarily, one of the customer service reps answered a phone call and became a bit agitated. Uh-oh, I thought. He was shaking his head while speaking to his colleagues, until, thank goodness, a pair of pilots arrived on the scene. Turns out our original pilots had timed out, and this new pair was pulled off a flight to LA to take us to Chicago.

What would have happened if they hadn’t been available? And what happened to the passengers on the LA flight? It boggles my mind. There is no way to count on leaving on time.

En route, there were the obligatory free sodas and little snack packages that I find nearly impossible to rip open. I had consumed my peanut-butter-and-jam sandwich while still at the airport, to avoid risk to a potential seat mate with a nut allergy. I passed the time writing, which took my mind off the fact that I felt like the proverbial sardine squished in a can. There is simply no room to maneuver in an economy seat—and I am small. I did my best to ease strain on my knees by resting my feet on my backpack under the forward seat. We arrived about a half-hour late. It was a relief to get out of there.

Coming home was even more aggravating. My mid-afternoon flight on Friday was on schedule when I left the Loop for O’Hare. But by the time I arrived and passed through security, it was 12 minutes late. Not a good sign. Soon, we were pushed back a half-hour, then an hour. It was raining hard in Boston, and Logan was slowing down incoming flights. Any hopes of getting home in time for Shabbat dinner with my family were dashed—especially once I had to check through my carry-on bag due to lack of overhead storage (of course).

We finally were allowed to board 90 minutes late, only to sit on the tarmac for another half-hour, waiting for permission to take off due to Boston weather. I called the limo service that was to bring me home, to alert them to the latest delay and my need to go through baggage claim, and found out that I now couldn’t get a ride until 10:30. I called Al, and he said he’d come and pick me up.

All through this, I was trying to be philosophical. Really, this was no one’s fault. Bad weather is bad weather, and it was safer to leave later. As long as this flight crew didn’t time out, we’d be okay. But the process of waiting was just, well, draining. The airport was crowded. The food options were overpriced and not very good. Everyone sat around with their noses in their smartphones or laptops (myself included). There was some minimal esprit de corps, snippets of conversations, but mostly a sense of soldiering on. Really, everyone knows air travel will be just a royal pain of delays, screwed up plans and stress. We’ve all lowered our expectations, and unless you can afford first class seats and amenities, the pretense of a pleasant flight is only that—a pretense.

Once in the air, I immersed myself in Patti Smith’s exquisite memoir M Train, which proved the perfect escape from all the aggravations of air travel—until we hit some serious turbulence approaching Logan. I had no idea how bad the weather was until then. Lightening flashed in distant clouds. Otherwise, you couldn’t see a thing. The pilot directed the flight attendants to go to their jump-seats. They asked us to wake fellow passengers as we began our final decent, because they could not walk the aisles.

It was a relief to land safely. As we taxied to our gate at Logan, through the pouring rain, one of the flight attendants made the obligatory announcement that she hoped we had enjoyed our flight. Really? I looked at one of my seat mates, and we both chuckled. It would have been so much more honest if she’d simply said what we were all thinking—glad we made it.

Fortunately, Al arrived safely at the airport, just as I was heading to the baggage claim. The rain eased as we drove farther west on the Pike—a good thing, because only hours earlier, downtown streets in our city were severely flooded.

Needless to say, it was great to get home. Over the weekend, I received an email asking me to rate my travel experience. I’m still considering how to respond.

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: Josh Sorenson

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.