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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Taste

Come Fly with Me

Evelyn Herwitz · October 25, 2016 · Leave a Comment

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

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Filed Under: Body, Hearing, Mind, Sight, Taste Tagged With: hands, managing chronic disease, resilience, travel

Unplugged

Evelyn Herwitz · October 4, 2016 · Leave a Comment

img_2433I’m writing Sunday morning at the dining room table, snatching a few quiet minutes before I launch into mega-cooking mode. Rosh Hashanah starts this evening, we have family coming for dinner tonight and friends tomorrow. I’ve been spreading out the work over several days to manage my hands and feet and energy, but inevitably, there is a lot to do until the last minute, when our guests arrive.

Then I’m going to unplug. One of my resolutions for the Jewish New Year is to stay offline on the holidays and Shabbat. I have become totally addicted to political news during this crazy, horrible election season, and I need to take a break from all the stress. The past two weekends, I put away my iPhone from Friday sunset to Saturday sunset, and I feel SO MUCH BETTER.

The reality is this: Unless there is a true emergency (a tornado, a flash flood, a fire), you don’t miss anything that important by skipping the news cycle for a day. It is a true relief to spare yourself the bombardment of bombast, hysterical headlines, frenetic Facebook feed and ceaseless flash of ads and images. You begin to realize your time and attention are your own to own. Your shoulders relax and you can concentrate with greater focus on what’s truly important.

So, on to cooking and good company and contemplating what I have to be grateful for in this life and how I could do better by others. To those who celebrate, my best wishes for a sweet, fulfilling and peaceful New Year. And to those of you with different beliefs, I wish you a healthful, stress-free break, however you define it, from whatever may be weighing you down.

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, Hearing, Mind, Sight, Smell, Taste Tagged With: body-mind balance, hands, managing chronic disease, mindfulness, resilience

Resilience

Evelyn Herwitz · September 27, 2016 · 4 Comments

Eight days after a bomb shook the Chelsea neighborhood of lower Manhattan, I am in NYC on a business trip, staying in a hotel just a few blocks from where the explosion rocked W 23rd Street. You would never know anything had happened.

I arrived here Sunday afternoon, to be fully rested for a long day of meetings on Monday. I was tired from the train ride, but I didn’t want to lose the day, sunny and clear, with a hint of fall in the air. So I took a long walk to visit to the new Whitney Museum and catch the last day of a powerful retrospective exhibit by photographer Danny Lyon. After a lovely dinner, I walked the High Line back up to 23rd and across 5th Avenue to the east side of Manhattan, passing the site of the explosion without even noticing anything unusual.

New Yorkers are hardy folk. It was incredibly reassuring, after all the horrible headlines, to see how life goes on as normal here. People were out walking their dogs, going on dates, hanging out with friends, taking selfies, eating in restaurants, smoking cigarettes, sitting on benches while immersed in deep conversations. Two men sang their hearts out, busking for the High Line crowd. I passed a man sleeping on the sidewalk. Next to his head, someone had placed a bottle of water and a fresh sandwich wrapped in cellophane.

I must have walked at least four miles, down to the museum and back. Any tension I felt when I set out in the afternoon had completely vanished by the time I returned to my room, a little after eight. There is much more to life than what is filtered through the news. So, come along with me and enjoy the view. . . .

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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, Hearing, Mind, Sight, Taste Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience, travel

Immersion

Evelyn Herwitz · August 2, 2016 · 6 Comments

Could it really be that Al and I were in Pisa, Italy, on Sunday? And in Venice, Florence and the Isle of Elba over the preceding two-and-a-half weeks? Air travel makes it possible to be halfway around the world in the morning and back home late the same night (depending on which direction you’re traveling). But my mind is somewhere in-between. And I want to hold onto the memories of our journey for as long as I can.

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Venice has been a lifelong dream—ever since my father showed me a series of small, black-and-white photos of the canals from his military service in Italy during World War II. Those images made a big impression on me as a little girl. So much so that in first grade, when I had to answer a test question, “True or False, All cities have streets,” I marked it false. My teacher, Miss Kelly, called me up to her desk and asked me why. I explained that Venice has canals. She laughed, and she didn’t mark my answer wrong.

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Whatever I imagined as a child, however, could not compare to the wonder of Venice—a magic puzzle box of winding pedestrian passageways, bridges and canals. Around each corner is yet another stunning, surprising view. We heard jazz and Vivaldi, saw fireworks and Kandinsky, ate delicious meals, drank wonderful wines, and continually got lost and found. We stayed six days, and it wasn’t enough.

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For four days in Florence, we marveled at art, ancient to modern. I could have stared at Botticelli’s The Birth of Venus for hours, were it not for the crowds in the Uffizi—for all the images I’ve seen, and the memes, there is nothing like witnessing a major art work in person. Michelangelo’s David, too, is breathtaking. So is the view of the city and Tuscan hills from Forte di Belevedere, across the Arno, and so much more.

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Our final stop, Pisa, has also been a source of intrigue since childhood. My sister and I had a wall map of the ancient world when we were young, which included a small drawing of the Leaning Tower to indicate where Pisa is located in Italy. How could a building lean like that and still stand? I wondered.

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Well, now I’ve seen it with my own eyes. It does lean and stay standing (thanks to some extraordinary feats of engineering), and the architecture is exquisite. There is much more to the city, of course, which is full of surprises—from the serene Botanical Garden of the University of Pisa to an exhibition of book illustrations by Roberto Innocenti at the Palazzo Blu.

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But our favorite adventure was our four days on Elba, an island off the west coast of Italy, part of the Tuscan Archipelago. Truly, one of the most, if not the most beautiful place I have ever seen. Panoramic mountain views overlooking azure seas, crystal clear water, beautiful hiking trails, salmon sunsets. It was a vacation in the midst of our vacation—calming, quiet, a time to get away from the crowds and contemplate.  

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And, best of all, I went swimming in the Mediterranean—the first time I have been able to swim in at least a decade. The water was warm and so clear and clean that, for once, I was not worried about risking an infection in my fingers. Indeed, the salt water seemed actually to help my ulcers to heal.

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All of this, plus the fact that I was able to tolerate the long plane rides, walk and walk in intense heat (high 90s most of the trip), eat new foods, get enough sleep most nights, and avoid any scleroderma complications—all of this, on top of being able to swing the trip in the first place, was a great gift.

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I’m glad to be back home, where the scenery is familiar. I know where to find just about everything in our house. Family and friends are close by. It was very good to sleep in our own bed once again. But there is so much more of the world to see. As long as we both are healthy enough and able, we hope to keep on traveling. My “Next Trip” list is already in the works.

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, Hearing, Mind, Sight, Smell, Taste, Touch

That’s a Wrap

Evelyn Herwitz · May 17, 2016 · 2 Comments

23924473493_f89d1e0822_zWould someone please explain to me why a cucumber requires shrink wrap? I’m talking about English cucumbers, the long ones that have a very crisp texture and fewer seeds. Their skins aren’t as tough as regular cukes. But shrink wrap? Really?

I hate that shrink wrap. It is next to impossible for me to strip it from the cucumber. My fingers just can’t grip that well. And it clings so tightly, the harder you pull, the more it resists. Honestly, all I want to do is make a salad. Why does it have to be so difficult?

Here are some other food packaging items that drive me crazy:

The plastic film covering, beneath the lid, that clings to the rim of sour cream tubs and yogurt containers. (Those plastic lids aren’t so easy to pry up, either.) I usually have to grab a knife to slit them open, because I cannot grasp the longer edge you’re supposed to use to strip the film away.

The tight foil covering of my calcium chews. These come wrapped individually, with neatly turned ends that are folded the way you wrap a birthday present. Picking those ends up with what’s left of my finger nails takes patience, to say the least.

Plastic screw tops with perforated extensions that twist off when you first open the jar. Usually, I need to wear a pair of rubber dish gloves to be able to hold on without my hand slipping and twist without injuring my skin. I have an adjustable jar opener, but it doesn’t always do the job as well as it should.

Sealed plastic bags for items like shredded cheese that have molded ziplock seals. The idea is that you can reseal the bag after you open it the first time. Problem is I can never pry apart the ziplock, so I inevitably cut it off and put the bag in another plastic bag with a usable ziplock—or just use some other clip to keep it shut. Just give me a bag that opens easily, please.

Sealed plastic wrappers inside sealed cereal or cracker boxes. I can never, ever, pull them apart neatly. It seems like these wrappers used to open easily, but now they are made of some kind of heavier plastic that just won’t yield to my fingers. So I usually ask Al to do it for me.

He, of course, is my secret weapon for all of the above and more. Sometimes I wonder if I depend too heavily on my husband for help with all of these simple tasks. I know I should find more adaptive tools to tackle hermetically sealed packaging. But then I have to have those tools handy every time I try to open something. Which is a nuisance.

Some days, like the other night, when I was rushing to make dinner and had to keep struggling with food wrappers, it’s just plain tiring. And wasteful. I do my best to recycle, but some of that packaging has nowhere to go but the trash. We live in a litigious, germaphobic culture where shrink-wrapped cucumbers are the norm. Even if my hands worked perfectly, there has to be a better way.

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: Ajax Great

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Filed Under: Body, Mind, Sight, Smell, Taste, Touch Tagged With: adaptive tools, finger ulcers, hands, managing chronic disease

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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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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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