Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Clued In

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All day long, I think about words. For a writer, they are my lifeblood. Sometimes, my head feels so full of words that I need to do something, anything, nonverbal. Walking helps. So does weaving or sewing—making something with my hands, however challenging that may be.

But one of my favorite ways to relax is to immerse myself in words and more words—doing The New York Times crossword puzzle. I used to limit myself to the Sunday crossword because we have a print subscription to the big, hefty weekend edition. Then came the 2016 presidential election. I decided I needed to support a free press more actively and bought a digital subscription to the Times (as well as The Washington Post).

My Times subscription came with an added bonus—a reduced digital subscription to the crossword app. Why not? I thought. I need a break from all the bad headlines.

Doing the daily crossword has now become something of an addiction. There’s the Monday crossword, an easy start to the week that I can finish in about ten minutes. Tuesday is usually a snap, too. The puzzles get harder by midweek and can be a real challenge by Friday. Saturday’s puzzle is almost always a stumper. Sunday is a crapshoot. Sometimes I get the theme right away; others can take a few days to finish.

Aside from being a welcome distraction from upsetting news (which I certainly understand better, now that I’m reading more comprehensive coverage, but wish this weren’t such a disheartening civic responsibility), the crossword’s digital version has an added bonus: It’s so much easier to complete with a stroke of my laptop keys than to write in with pencil. My hands don’t get as tired. I don’t have to struggle with a smudgy eraser (no, I’m not one of those pen-wielding crossword purists).

This is especially true for the Sunday puzzle. A few years ago, the Times switched format to a semigloss paper stock, which I find incredibly difficult to write on. It requires far too much finger pressure to inscribe anything legible on it, and the light reflection off the paper makes it hard to see what you’ve written. Fine for magazine photos, not for Number Two pencils and bifocals.

The downside of the digital version: It’s much more tempting to cheat and look up answers on the Internet.

To avoid that downfall, I’ve invited Al, my crossword ninja, to do the puzzles with me. He has an uncanny ability to decipher clues. And it’s a fun way to relax together in the evening.

Who knew that “fake news” wars could have such a delightful side-effect?

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.

In 3-2-1

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I stay up way too late most nights watching late night comedians. Since we live on the East Coast, this means I’m getting to bed around midnight. My evening routine is prolonged by tending to all the bandages on my fingers—up to six ulcers at present, plus one on my left ankle—so my excuse is that the shows keep me company while I’m taking care of my hands. But in all honesty, I rely on satire to keep my sanity.

My favorite is Stephen Colbert. Al’s, too. So when Al suggested that we mark our anniversary this year by a trip to NYC to see a live taping of The Late Show, I readily agreed. We were married in December 32 years ago, but due to scheduling conflicts, our first opportunity to go was last week.

And go, we did. We decided to make a mini vacation of it, booking a four star hotel on Park Avenue at a January discount, scoring half-price tickets to a Sunday afternoon off-Broadway show, enjoying great food and wonderful art museums on Monday and Tuesday. But the highlight of the trip was our pilgrimage to the Ed Sullivan Theatre for Colbert on Monday afternoon.

Now, as children of the ’60s, it was exciting enough to be at the very spot where the Beatles made their American debut. The theatre features architectural filagree that gives it a period flare. It’s located on Broadway between West 53rd and 54th Streets–the latter also designated as Señor Wences Way, a throwback to that wonderful, corny feature act on the Ed Sullivan Show that we loved as kids.

But it was also fun just to be with other Colbert fans as we waited outside, joking and speculating about the program as we stamped our feet and huddled against the cold. The priority ticket line formed at 3:00 p.m. We arrived shortly after and quickly made our way through the check-in, staffed by friendly red-jacketed twenty-somethings armed with iPads and headphones, who made occasional announcements about what to do and where to go. A nice couple offered to take our picture in front of the marquee, and we returned the favor.

By 3:45, rehearsal was over and we were finally allowed to enter the warm theatre lobby. More waiting and waiting in a long, snaking line beneath large TV monitors playing excerpts from previous shows, though the sound was muted. From time to time, one of the staff would fill us in on next steps and rules: turn off all cell phones, no food allowed in the studio theatre, and—around 4:30—now’s the time to use the bathroom, because once you’re seated, there are no bathroom breaks.

Wait, what? I’d figured that, if I had to go, I’d be able to do so during a commercial. But, no, only if it was an emergency—and no guarantee you could be reseated. Now, this was potentially a major issue for me. I can no longer go long stretches without a trip to the bathroom. My bladder just doesn’t empty efficiently. So I joined a line of other women, waiting for a stall in the Ladies’ Room, and hoped I could squeeze out the last drop. Fortunately, we’d eaten lunch about two hours earlier, and I hadn’t had much to drink.

Back in line, I distracted myself by chatting with some of our neighbors, flexing my ankles and feeling grateful that I was wearing compression knee socks, so that my feet wouldn’t swell from all the standing around. Finally, shortly after 5:00, it was time to be seated. The red jackets were very experienced at crowd control, and we efficiently filed into the main floor. Lo and behold, the center section was full, so Al and I found ourselves guided toward the third row of the right-hand section, directly in front of Jon Batiste’s Steinway concert grand piano. Al was in heaven.

Here we were, with a great view of the Late Show set, so familiar from our TV at home. We gawked and chatted with our seat mates (mine was a Lutheran pastor from Saskatchewan, here with friends for her first visit to NYC), listened to more instructions about our role as audience (enthusiasm and energy are essential for the performers as well as the 2.5 million folks watching later tonight), practiced standing and cheering, warmed up to the warm-up comic, clapped and bopped to the outstanding jazz of Jon Batiste and Stay Human, and then, finally, screamed our heads off, just like those Beatles fans fifty years ago, when Stephen Colbert ran out on stage to greet us.

He was genuinely warm in person, very down-to-earth, as he fielded a few questions from the audience with his quick, dry wit. Then it was time for the taping to begin. We could watch the cold open on the video monitors, then Colbert ran out on stage again, this time as part of the show. The boom camera swept the audience, and we were off to the races.

Time zipped by. There was a surreal quality to the experience, watching Colbert perform for the four cameras that surrounded him in his opening monologue, even as he fed off our energy. There was a pause for him to switch from his suit jacket to a Dad sweater for a skit with guest Leslie Mann, another pause because one of the lights wasn’t working properly, casting a shadow on the couch where they were to sit. “The Russians must have hacked our set,” he quipped.

The band played on during commercial breaks (how I wish that were the case when you watch on television–they are such amazing talents). Lewis Black and Dan Levy rounded out the program. We stood and cheered on cue (when the stage manager waved his rolled-up script in the air). Colbert’s wife made a surprise appearance to roars of approval.

And then it was over. I’d been so absorbed, I’d forgotten all about any bathroom jitters. Al and I looked at each other. We didn’t want it to end. Despite the cold, we walked all the way from Times Square back to a little Italian restaurant near our hotel, where we enjoyed a fine dinner and live piano music. Later, we watched the show again in our hotel room, to see how it was edited and, of course, to see if we made it onto the tape. And there we stood, cheering in the crowd after one of the early commercial breaks! I finished bandaging my fingers, and we went soundly to sleep.

All in all, it was a wonderful anniversary celebration—a great break, a much-needed chance to recharge, a gift of resilience. And, oh, did I mention? The Colbert tickets were free.

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.

Think Warm Thoughts

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It’s really cold out. My hands are not happy. Six ulcers on my fingers and a tenacious one on my left ankle tingle and smart. The good news: even though we’re in the teens today, by Wednesday, it’s supposed to go up to the 50s. Welcome to New England.

As I await the warming trend, it’s nice to remember our long New Year’s weekend in St. Petersburg, Florida. Were we really at the beach one week ago? I have the pictures to prove it. So, I share with you, Dear Reader, some highlights of our trip. I hope these bring a little warmth into your day. Enjoy. . . .

At the Dali Museum, which features the works of Spanish surrealist painter Salvador Dali, a special exhibit explored the life and paintings of Frida Kahlo, a 20th century Mexican artist who broke new ground for women painters. I found her life’s story especially moving: she suffered a serious accident at 18 that caused her great pain and many surgeries over her lifetime, but her art enabled her to find meaning in her struggles and to express herself in a universal language.

While Dali’s paintings of melting clocks and dreamscapes are his best known works, I preferred these two examples of his early paintings.

Outside the Dali Museum, visitors tie their entrance wristbands to a bedecked tree. The strips of colored tags luff in the breeze.

The Morean Arts Center includes a collection of glass sculptures by Dale Chihuly. His exuberant use of color and form creates a mesmerizing, whimsical kaleidoscope.

Around the corner, the Center includes a glass blowing workshop. We enjoyed the demonstration, which resulted in a free form glass bowl.

We met ibises in the afternoon . . .

. . . and pelicans at sunset.

St. Pete Beach offered a chance to relax and pretend that winter didn’t exist.

Back home, there is snow on the ground and ice on the sidewalks. It will all be gone by week’s end. I know there’s more on the way. I just need to remember . . . think warm thoughts.

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.

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

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