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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Time Travel

Evelyn Herwitz · June 18, 2019 · Leave a Comment

It was just two weeks ago, on Monday, that I flew home from Florida after meeting my cousin and her parents for the first time. But it already seems much longer. That’s one of the strange aspects of time and distance: You can go away and feel completely immersed in a new place, with new people, and then return home, where it feels like all that was a dream.

But it most certainly was real. Last fall, out of the blue, I received a message from my second cousin. Her mother, who is now 95, was my mother’s first cousin; her grandmother was my grandfather’s younger sister. Our mothers grew up together in Berlin, but went separate ways when my mother and grandparents immigrated to America in 1936. My cousin’s side of the family moved to Bulgaria and waited out the Second World War until 1948, when my grandfather sponsored them to come to the U.S. Like me, my cousin was born in the States. Her family settled in the Midwest, and mine eventually made a home on the East Coast.

I knew of her, and she knew of me, but for reasons that neither of us could figure out (“Why have we never met?” was one of the weekend’s refrains), our mothers never saw fit to get together as adults. They did, however, maintain a robust email correspondence in their seventies, which ended with my mother’s death in 1999.

Fast forward to the recent past, when my cousin moved her parents (her dad is 94) from their Indiana home to Florida, so that she could care for them close by. In the process, she discovered a treasure trove of family pictures and other memorabilia. And, fortunately for me, she couldn’t bear to toss any of it. She wondered if I or my sister might want some of the photos, poems written for special occasions, wedding invitations, death notices, steamship manifests, greeting cards, thank you notes, and more. A determined researcher, she found me and took a chance on making a call.

Since that initial contact, we’ve been emailing back and forth. I asked if I could meet her and her parents, and received an enthusiastic yes. So, I went. We hit it off immediately and stayed up late each night talking about family and all that we have in common. Her husband was out of town, and two grown sons off on their own, so we had the house to ourselves. It was wonderful to spend time with her parents, too; we had great conversations about family history and even spoke a little German. And my cousin and I got to the beach.

So many photos, so many memories, so many stories. There were pictures of my grandfather’s youngest sister, who died when she was 26, before the War. I had always heard of her, but never known what she looked like. There were pictures of my grandparents as a young couple, and of my grandmother as a girl with a huge bow in her hair. There was a poem that my mother, then an infant, supposedly wrote on the occasion of a family wedding. There was a picture of my grandmother tending my mother as a baby. There was a family tree with information my cousin had gleaned as a high school student from her grandmother, which filled in some missing puzzle pieces.

There were also many photos of people I did not recognize. My cousin still hopes to find out their identity. She feels a pull to honor their memory. And harbors a deep wish not to end up as a nameless person in an image, whom no-one recognizes. It was a poignant observation, all the more relevant in this digital age, when it’s so easy to point and shoot and amass thousands of images in the cloud, to live forever as bits of anonymous data.

It is strange how sepia-toned photographs call to us across time and distance. I stare at these images of my German relatives and wonder—what were they thinking when those photos were taken? What did they know of the coming storm that would force them to make the most difficult choice imaginable, of leaving home to escape such horrific danger? They look so innocent, so content in their familiar world.

And I wonder: how would our lives have been different if my cousin and her family had known mine, growing up? I’ve always wondered what it would be like to have a cousin. Both my parents were only children, and our extended family was very small. At least, now, thanks to my cousin, I can find out.

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. Please view Privacy Policy here.

 

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: resilience, travel, vacation

Lemonade

Evelyn Herwitz · June 4, 2019 · 2 Comments

Al is back home, from Israel, and so am I, from a lovely weekend in Florida with cousins I had never met. Last fall, my second cousin contacted me out of the blue, having found me online (this, we agreed, was both amazing and a little creepy, given how much information is out there that we don’t know about) to send me a host of family memorabilia she had saved from her parents’ home when she moved them to live near her a few years ago. That message evolved into a correspondence over the winter, and this weekend I went to meet her and her nonagenarian parents for the first time.

We had a great visit. And I’ll write about that for a future post. But what I want to write about today is my crazy travel experience, no thanks to American Airlines.

All went smoothly on Friday for the first leg of my trip, from Boston to Charlotte, N.C. But as soon as our flight landed, I received a text from American that my connecting flight had been cancelled. They automatically rebooked me . . . on a flight to northwest Florida that left close to 10:00 p.m. This would not do, as it would have been a nine hour layover. Fortunately, I was able to get on a flight that left closer to 6:00 p.m., and the time zone switch saved another hour at my cousin’s end. She was most understanding, and so now I had just five hours to kill.

Then I remembered: a friend and former colleague of mine from my days as a college marketing director lives in Charlotte. On a whim, I sent her a message. Maybe she’d be available to get together? Total long shot. But, as I was finishing lunch in the airport’s huge atrium, I received a text back. Not only was she available—she was on her way to the airport with her family, heading for a weekend family graduation get-together! What are the odds? I met her at the gate for her flight, and we spent a wonderful hour catching up. Hadn’t seen each other in 14 years.

My rebooked flight boarded about an hour later, and soon I met my cousin and was off on our family reunion adventure.

Sunday afternoon, my cousin dropped me off at the airport to return to Boston. I’d been saying auf Wiedersehen instead of goodbye, because her parents were originally from Germany, like the rest of my mother’s family—it means until we see each other again. I didn’t realize how literal that would become.

The gate for my flight back to Charlotte was jammed, not only with travelers for my 4:00 p.m. flight, but with unhappy travelers for the earlier flight to the same destination who were now delayed and on standby for my flight. But our flight didn’t board. And didn’t board. And didn’t board.

The story we were told was that the flight attendants had not yet arrived (although they were apparently staying at a nearby hotel). When I asked the gate attendant what was going on, he said, “If I told you the story, you wouldn’t believe me.” “Try me,” I said. But he wouldn’t take the bait. He did, however, help me to rebook my flight for the next day. By the time I left the airport with my cousin, who kindly put me up for another night, the flight still hadn’t taken off. According to my Flight Aware app, it eventually landed four minutes after my (also delayed) connecting flight departed.

Now, the complicating factor was that Al was returning home from Israel on Monday evening, and I was planning to pick him up at Logan. But my new schedule meant that I’d get back to Boston (if all went well) at 5:00 p.m. No time to go home and come back. Instead, however, I worked out an arrangement with the van service I had planned to take back on Sunday, to pick us both up Monday evening. Since Al was flying Air Canada, he was arriving at the same domestic air terminal as I was, from Charlotte. Fortunately, I was able to store my carry-on in one of the last overhead spaces on my flight (I was in boarding group 8) so I could stay inside the main terminal, have dinner, and just meet him at the exit point for Air Canada, as opposed to hanging around baggage claim.

Amazingly, this time, my AA flights went like clockwork, and Al’s long-haul flight to Montreal and return to Boston did, also. We both made it through large airports for our connections. I had a nice meal at Legal Seafood. And we got to ride home together without me having to drive, a good thing, because I was pretty tired.

So, that’s how I spent my weekend. Glad to be back. Glad I went. Glad it all worked out so well, in the end.

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. Please view Privacy Policy here.

Image: Francesca Hotchin

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

On the Town

Evelyn Herwitz · May 14, 2019 · 1 Comment

I did a lot of walking last week, through and beneath the streets of Manhattan. The first half of the trip was business, the second half, pleasure—spending time with my sister to celebrate our birthdays, which are three weeks apart. And celebrate, we did.

From dinner at Ellen’s Stardust Diner, where the waitstaff are all Broadway hopefuls who belt out show tunes, to a walking tour of SOHO, Little Italy and Chinatown; from a lovely stroll up the High Line to a gourmet dinner and an outstanding performance of To Kill a Mockingbird—we had a great time. The weather was beautiful, for the most part. Our hotel off Times Square was surprisingly quiet. We discovered an excellent diner for breakfast and another for some of the best apple strudel I’ve ever tasted. And we started brainstorming our next trip together.

I’m happy to report that my new sneakers worked out pretty well. My feet certainly got tired, but not as tired as they usually do, and without significant neuropathy. Also notable: as I schlepped through the subway, to and from commuter rail, New Yorkers helped to carry my carry-on up and down steep staircases. Without my ever having to ask. Angels are everywhere.

Along the way, I enjoyed wonderful art, on the street and at the Met. Here’s a sampling for your viewing pleasure:

Art Deco with words for our times at Rockefeller Center
Also seen at Rockefeller Center
In front of 30 Rock
Street art in SOHO
Artistic and delicious pastry at Ferrara in Little Italy
Statue of Chang Kai Shek in Chinatown
Street art across from the Whitney Museum entrance to the High Line
Gardening on the High Line
High Line mural
Art Deco murals and design at the Hotel Edison
The Beatle’s original instruments at the Met’s “Play It Loud” exhibit . . .
. . . and some very decorative guitars
Berlin artist Alicja Kwade’s “ParaPivot” rooftop installation at the Met . . .
. . . and a spectacular view of the NYC skyline beyond Central Park

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. Please view Privacy Policy here.

 

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

‘Tis the Season

Evelyn Herwitz · May 7, 2019 · Leave a Comment

April showers (and we’ve had plenty) certainly bring May flowers in my neighborhood. White-blossomed cherry trees and cream-colored callery pears, fuchsia magnolias and pink weeping cherries, along with maples unfurling pale green and purple leaves, grace sidewalks and lawns. White and violet violets speckle lawns that grow lusher by the day. The air smells delightful. With all the rain of late, pollen is subdued, and I haven’t started sneezing, yet.

In keeping with the season, another sign of spring has emerged: I have an infected ulcer in my left thumb. This spiked suddenly last Monday. Fortunately, it’s responding to antibiotics, which seem to be a perennial part of my world at this time of year. A good thing, because I’m traveling this week to New York for a mix of business and pleasure.

As my thumb became irritated, I wondered if I’d aggravated it by typing. Then I realized that I never use it to type. I’ve adapted to so many finger injuries over the decades that I automatically compensate for fingers that can’t comfortably or effectively strike the keys. Which made me wonder: How many fingers am I actually using to touch-type?

This is a bit like asking a centipede how it walks. I really have to stop and notice what I’m doing automatically, which can lead to more typos. But the answer is this: I use my pinky and ring fingers on my left hand, and my thumb, ring finger and pinky on my right. And I can still type quickly enough so that my thoughts translate almost immediately to the computer screen. It helps, significantly, to use an Apple “chiclet” keyboard, which has nearly flat keys with an easy touch, and a minimal rise so it’s easy on my wrists.

When my hands fell apart with severe ulcers two years ago (also in the spring), I learned to use Dragon dictation software to write. It was certainly a big help and enabled me to keep writing. But dictation taps a different part of the brain than writing brain-to-hands, and I will keep typing, even with only five fingers, as long as I can, because it is simply faster and more intuitive.

And so, I am dashing off this entry before I leave on my travels. Looking forward to fresh adventures—and to seeing how the flowers have grow when I come home.

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. Please view Privacy Policy here.

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

Travel Hacks

Evelyn Herwitz · December 11, 2018 · Leave a Comment

This past weekend, I tried a new way to travel to Philadelphia to see my younger daughter. Our small regional airport now offers twice daily, non-stop American Eagle Shuttle flights⎯and so far, for a reasonable price. The airport is ten minutes from my home, as opposed to an hour-plus drive to Logan in Boston or other regional airports. And the flight itself takes less than an hour, as opposed to a slightly longer flight from Boston or
a six-hour drive.

So, worth the experiment. The plane is small, as in one row of single seats on the left, and double seats on the right. Cozy, to say the least. There is also no room in the overhead compartments for regular wheeled carry-on luggage. But they offer you a valet check
for your bag.

This is a great option for me, because it means that you leave your bag at the end of the flight bridge before boarding and retrieve it on the tarmac in Philly (process is reversed for the return flight). It’s great because (a) I don’t have to hassle with asking someone to put my bag overhead since I can’t do  it myself, (b) I don’t have to pay a baggage check fee and (c) retrieval is quick and easy (no waiting at the baggage claim conveyor belt and dragging my bag off before it moves away, also a challenge for my hands).

The other advantage of the small plane: being able to sit by myself in a single seat on the left. While I didn’t need to get up during the short flight, I could easily have done so. And I had the window, too. Best of both worlds.

Recently, when traveling alone, I’ve been stepping up to the gate counter when they ask for volunteers to place bags inside the plane because the flight is too full for everyone’s carry-ons to fit overhead. I get a free checked bag, and since the claim-check is given at the gate, there’s significantly less chance of my bag getting misplaced. I may have to wait at baggage claim to retrieve my carry-on, but it makes boarding and deplaning (who came up with that word?) much easier on my hands.

The only disadvantage of flying from my local airport is no TSA Pre-check. The airport is just too small. So I have to go through the rigamarole of shoes and liquids and all that. But since the airport is so small, there’s virtually no TSA line, and the agents are more patient and friendly. The same was actually true for my evening flight back from the shuttle terminal at Philadelphia International (though the TSA agents were gruffer). It takes me longer than most to put all my stuff in the bins and move it to the conveyor belt, so it’s nice to avoid all the pressure of hustling because others are waiting in line.

So, here’s to regional airports and shuttle flights! It’s not always an option, but if you can, there are some genuine advantages that ease some of the physical and mental stress of travel. Oh, and the flight was a breeze.

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. Please view Privacy Policy here.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: digital ulcers, hands, travel

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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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