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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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resilience

Flying Lesson

Evelyn Herwitz · February 4, 2014 · 4 Comments

Last Thursday night, Al and I stayed up way too late watching a Batman movie. I was sitting on the bed, changing my bandages—a half-hour process these days, with so many finger ulcers—and he was relaxing, not yet asleep, but tired enough to skip channel surfing.

Somehow, we got hooked on Batman Begins, with Christian Bale as the Dark Knight. It wasn’t the plot—you know from the start how it will end. There were far too many commercials, and if we’d really wanted to watch the movie, we could have streamed it on Al’s computer with Netflix.

There was just something mesmerizing about the telling of the story, which revolves around Bruce Wayne’s struggle to overcome his childhood fears and the loss of his parents, and his quest to save Gotham City from the forces of evil.

I guess I’m a sucker for heroics, imagined and otherwise.

Plus, he could do all those neat tricks with zooming upside-down, snatching up the baddies from their lairs.

And he could fly.

When I was a kid, I used to wonder aloud what it would feel like to be a bird—to have wings and be able to soar around in the sky and land on a delicate branch, way up in a tree.

But much as I wondered about this, I was also afraid of heights. Sitting in a balcony at a theatre would make me anxious, that somehow I would fall over the edge. I was terrified of ferris wheels and roller coasters. When our family visited the top of the Empire State Building, I hugged the outer walls, not trusting the sturdy iron railings to hold (this was back in the day when the 102nd floor observatory was still open to the public).

So it was, nearly 20 years ago, when Al bought me a one-hour flying lesson at a synagogue fundraiser for my 40th birthday, that I thought he was out of his mind. I had certainly flown many miles in commercial airliners by then, but the idea of piloting a private plane was about the last thing I’d choose to do in my free time.

His inspiration for this gift was to give me a bird’s eye view of local landscape, to help my research for the book I was writing about the history of Worcester’s urban forest. I had been telling him all about regional geology and topography, my most recent fascination. I didn’t want to hurt his feelings, so I reluctantly accepted.

The day of my lesson that summer dawned sunny and clear. We met my instructor, a local DJ who went by the handle of Roger X, at the airfield, next to his yellow Cessna. He was jocular and confident, very reassuring as I nervously settled into the pilot’s seat, with him as co-pilot. Within minutes, we were taxiing for take-off. As we rose into the air, Roger let go of the dual controls. I was flying the plane on my own. I began to perspire.

Roger instructed me how to pull back gently on the controls to keep climbing. He told me that flying a plane was as safe as driving a car—the air pressure differential over and under the wings pushes you up. I knew this, I understood the physics, but my heart was slamming in my chest.

And yet. The view was spectacular. I had chosen to fly north, tracing the pattern of Central New England mountains. There were Wachusett, Monadnock, Tecumsah, plopped like dollops of pistachio ice cream, separated by many miles, but aligned. The glacial patterns I had researched suddenly made sense.

I banked the plane in a U-turn, following Roger’s calm instructions, and we headed back. He spoke to the control tower as we approached the airfield. He told me what to do, and to my total amazement, I landed the plane safely. I peeled my sweat-soaked shirt from the seat-back and climbed out on shaky legs.

Relaxing into Al’s congratulatory embrace, I thanked him. Sincerely. It had been, ultimately, exhilarating, one of the best birthday presents ever.

I haven’t flown a plane since (expensive hobby). But I still cherish the memory of that lesson. We each have our own reasons to be fearful, some grounded in stark reality and some imagined, but angst-producing, nonetheless.

When I get stuck, I try to remember: You never know what fears can be overcome, or what you’re capable of, until you try. Sometimes it just takes the push of the one who knows you best to get there. Especially when, in spite of yourself, you really do want to fly.

Photo Credit: Skyhawk4Life via Compfight cc

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, managing chronic disease, resilience

Flowers at an Exhibition

Evelyn Herwitz · January 28, 2014 · 2 Comments

Just when it seems like it can’t get any colder, just when the wind chill hits sub-zero, just when my fingers are covered with bandages for seven—count ’em—seven ulcers from too much dry heat and bitter temps, along comes the Worcester Art Museum‘s (WAM) annual Flora in Winter exhibit.

A-a-a-a-a-h-h-h!

For four days, the WAM is filled with the scent of roses and hyacinths and peonies and more, arranged by regional floral artists to interpret masterpieces of fine art. It’s a great scavenger hunt through the museum to find each display. Al and I had a wonderful time visiting this weekend, and I hope you enjoy this virtual show of a few of my favorites to brighten your own winter blues.

"Portrait of a Young Lady," att. Willem Key Flowers by Susan Detjens
“Portrait of a Young Lady,” attributed to Willem Key
Flowers by Susan Detjens

 

"Young Shepherd with Sheep and Goats" by Jan Baptist Weenix and Bartholomeus van der Helst Flowers by Young Farwell/Helen Blazis
“Young Shepherd with Sheep and Goats,” Jan Baptist Weenix and Bartholomeus van der Helst
Flowers by Young Farwell/Helen Blazis

 

"Chapel of the Virgin at Subiaco," Samuel Finlay  Breese Morse Flowers by Mary Fletcher
“Chapel of the Virgin at Subiaco,” Samuel Finlay Breese Morse
Flowers by Mary Fletcher

 

"Julie and Aristotle," Alice Neel Flowers by Sandra Tosches
“Julie and Aristotle,” Alice Neel
Flowers by Sandra Tosches

 

"The Sea Gull," Milton Avery Flowers by Robin Whitney
“The Sea Gull,” Milton Avery
Flowers by Robin Whitney

 

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.

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Filed Under: Body, Mind, Sight, Smell Tagged With: finger ulcers, resilience, Worcester Art Museum

Hamster Wheel

Evelyn Herwitz · January 21, 2014 · Leave a Comment

Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q via Compfight cc

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.

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Filed Under: Body, Mind, Taste, Touch Tagged With: hands, insomnia, managing chronic disease, mindfulness, resilience

Defrosting

Evelyn Herwitz · January 14, 2014 · 2 Comments

Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus via Compfight cc

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.

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Filed Under: Body, Mind, Touch Tagged With: Arctic vortex, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

Wake-Up Call

Evelyn Herwitz · December 31, 2013 · 10 Comments

I tried an experiment this morning: Eat a bowl of oatmeal and craisins without doing anything else—no writing, no reading, no New York Times crossword puzzle, no checking email or Facebook or surfing the web on my iPhone, no planning the week’s menus or my work schedule. Just focus on my breakfast.

This proved a challenge. I only partially succeeded. (As soon as I realized I had the lead for this blog post, of course, I had to take a picture of my cereal bowl and tea and the little meditation bowl that a friend gave Al for the holidays). But for a few minutes, I was able to focus, and noticed several things:

  • I love our kitchen. We bought our house in part because of the skylit space over our kitchen table and the view of the rock garden out back. It’s very soothing.
  • I taste more when I’m paying attention to my food. So often I’m thinking of a million other things when I eat that I’m surprised when I’m finished. This was a nice, warming breakfast.
  • There are annoying new floaters in my right eye that have been bugging me for over a week, now—really, sometimes I think I see a bug and it’s a floater.
  • I have to consciously check myself from going off into my head and starting to compose—this blog, a worry-story about what might go wrong today, a trail of images about my long to-do list.

I will try this breakfast meditation again, perhaps not every morning (hard to break the habits of an inveterate multi-tasker), but at least two mornings a week. It’s part of my ongoing effort to be more present in the moment.

My lack of presence was stunningly obvious one evening last week when I was driving home from Boston with a plan to stop at the supermarket. I turned onto the correct street, but then, instead of going to the store, ended up at the gas station right before the store. My tank was three-quarters full. I had no need for gas. But I didn’t realize my error until I started pumping.

I made it to the market afterward and picked up the correct groceries. But I was a bit shaken by how I’d been just too absorbed in too many concerns taking up too much space in my head to go directly there, in the first place. Maybe it’s aging. Maybe I need more sleep. Maybe it’s just one of those silly things that happens sometimes, when you go on automatic pilot without realizing it.

But it’s also the second time in a week that I’ve made a similar error, intending to do an errand at one store and landing at another, nearby, because I was thinking too much about other things and not paying attention to where I was going.

Conclusion: As 2014 arrives, my big goal for the year is to stay more in the present, less in my head, where anxieties—about health, family, finances, safety, what the future might hold—suck up more energy and effort than they are worth, especially since 95 percent of the stuff I conjure up never happens, anyway.

One of the pitfalls of being a storyteller. Better to pour it all into essays or fiction when I’m safely at my computer and not behind the wheel.

For you, dear reader, I hope you avoid your own wrong turns this coming year. May your 2014 bring you inner peace, good health and healing, fulfillment and prosperity, and breakfasts worth savoring

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.

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Filed Under: Body, Mind, Sight Tagged With: meditation and disease management, mindfulness, resilience

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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…

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Recent Posts

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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.

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