• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

Hearing

In 3-2-1

Evelyn Herwitz · February 7, 2017 · 2 Comments

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience, travel, vacation

Oasis

Evelyn Herwitz · January 31, 2017 · 2 Comments

I’m finding it difficult to write about anything other than the chaos in the world, in our country, in my heart. So what I’m sharing today may seem odd. But we chose to immerse ourselves in art and floral arrangements at the Worcester Art Museum’s annual Flora in Winter exhibit this weekend. I’m grateful that I have the opportunity to do so. It is, indeed, a privilege.

Inspiration, courage, solutions, just finding the next step can become clearer when you give yourself the chance to find beauty in the world. I share these with you, Dear Reader, in hopes that you will find inspiration, too.

“The Blue Bowl” by Roger Fry

Hand-drawn mock-ups of Ed Emberley’s “Drawing Book of Animals”

“Selma to Montgomery March, 1965” by James Karales

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell Tagged With: anxiety, body-mind balance, managing chronic disease, resilience

Think Warm Thoughts

Evelyn Herwitz · January 10, 2017 · 1 Comment

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: finger ulcers, hands, managing chronic disease, mindfulness, Raynaud's, resilience, travel, vacation

Ain’t That a Groove

Evelyn Herwitz · December 27, 2016 · Leave a Comment

lywwpmswdog-hoang-duy-le

Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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: Hoàng Duy Lê

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Smell, Touch Tagged With: body-mind balance, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

Stand Tall

Evelyn Herwitz · December 20, 2016 · Leave a Comment

fa8ugyoy3us-ian-schneider

My posture has been lousy of late. Maybe I’m slouching in front of the computer too much. Or maybe it’s because it’s been too cold out and I’ve been fighting with a recalcitrant ulcer on my left ankle that’s made it harder to take a daily walk. Or maybe it’s just the collective weight of so much discouraging and downright frightening news that feels like a barbell on my shoulders.

Whatever the cause, I need to remind myself to straighten up, stretch my spine and hold up my head. Can’t face the world with a chronic stoop and cower. Nope. Especially not now.

So here’s my antidote, just in time for the holiday weekend: three gifts of inspiration that I share with you. I hope you enjoy these as much as I did when I discovered each one—and that you find yourself walking a little taller, stepping a bit lighter, as a result. And please, pass them along to anyone who could use a little uplift, too.

  1. Artist Christine Sun Kim’s TED Talk: The Enchanting Music of Sign Language
  2. On Being with Krista Tippett: Interview with Vincent Harding, Is America Possible?
  3. Tap v Irish Step Dance (Sorry, couldn’t find the origin of this YouTube video, but it’s a great performance!)

May your holidays be blessed with good company, much laughter, health and peace.

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: Ian Schneider

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 36
  • Page 37
  • Page 38
  • Page 39
  • Page 40
  • Interim pages omitted …
  • Page 57
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

Blog Archive

Recent Posts

  • Gutsy
  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break

I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in