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Reflections on the Messy Complexity of Chronicity

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And a Good Time Was Had by All

Evelyn Herwitz · August 20, 2019 · Leave a Comment

For years, Al has been telling me and our daughters about Woodstock. He was 18 in August of 1969 when he accepted an invitation from friends to drive from Massachusetts to Max Yasgur’s farm in Bethel Woods, N.Y., for what he thought was “some kind of arts festival.” Indeed. Amidst 400,000 others, he and his friends managed to plant their sleeping bags a third of the way up the hillside from the huge soundstage, with a great view of all the acts—except for Jimi Hendrix, because they left before he closed out the show, since they wanted to get back home and had tickets for his upcoming Boston concert. But that show was cancelled. A year later Hendrix died of a drug overdose. Al regrets the decision to leave early, to this day.

One of the acts he did see, close up, was the Saturday afternoon breakout performance by Carlos Santana and his band. So when we learned that Santana was headlining the Saturday evening fiftieth anniversary of Woodstock at Bethel Woods this past weekend, Al really, really wanted to go and share one of his fondest experiences with the three of us.

It took some convincing. I’m not a fan of huge crowds. Tickets cost nowhere near the $18 Al paid fifty years ago. (Really. He still has the ticket stub.) Affordable lodgings were hard to find. The timing was not great given other travel plans. And what if it rained? But it meant so much to my husband that I agreed. Our daughters were enthusiastically on board. I found us an Air BnB a half hour away, got tickets before everything sold out, and worked out all the logistics. And, boy, was it worth it.

The grounds at Bethel Woods Center for the Arts, now an established performance venue, are beautiful, bucolic, and immaculate. There is plenty of room to stroll around, even with a sold-out crowd. We spent the afternoon checking out the sites, walking down the hill to the spot where Al and his buddies listened to the ’69 show (this is no longer the concert area, but a well maintained lawn with the footprint of the original sound stage at the bottom), had our picture taken at the Woodstock memorial plaque (we got to the head of the line because Al was a “Woodstock Alum”), checked out some arts and crafts, snacked and stayed hydrated (it was very hot out), and listened to pre-concert performances scattered around the grounds.

Two hours before the concert was to start, we picked up our rented lawn chairs (you can’t bring your own) and waited with the crowd for the gates to open. Al found us a great spot, with an excellent view. Everyone was in a festive mood. Lots of tie-dyed outfits, flower garlands, bouncing beachballs, the scent of weed wafting in the air.

Fortunately, given uncertain weather forecasts, I’d also brought along four blue rain ponchos, which came in quite handy for several intermittent rain showers as we waited for the show to begin. I kept checking the radar on my cellphone, hoping the band of severe thunderstorms would continue to travel north of us. Which, thankfully, it did (although there were a few disconcerting bursts of thunder and lightening nearby).

The music did not disappoint. The Doobie Brothers opened for an hour-long set and got everyone on their feet, singing and dancing along to “Rockin’ Down the Highway” and other hits. Although they didn’t perform at the original Woodstock, they were certainly of the era, and can still rock with the best.

Dark skies overtook the event during intermission, but the rain wasn’t too intense and didn’t last long. Then Carlos Santana and his amazing band took the stage, and no one cared a whit about the weather. I have loved his music for years. A CD of Santana’s greatest hits, a mix of rock, blues, jazz, and Latin rhythms, was my antidote to stressful days when I was working in Boston years ago, and would ease my soul and rush-hour commute home on many an occasion.

The man is 72 years old, one of the finest rock guitarists in the world, and living proof that age does not define us. His wife, Cindy Blackman Santana, was featured on percussion, and is equally extraordinary. The band played for more than two hours straight, and we danced—ponchos on, ponchos off—through most of the show. It ended with everyone singing and swaying arm-in-arm to Santana’s version of a ’60s anthem, “Get Together” by the Youngbloods—still as relevant all these years later. The moon emerged from behind clouds. Fireworks closed out the night. We had a spectacular time together. Al said it far exceeded his expectations.

And what, you may ask, does this have to do with living with scleroderma? It’s about living, folks. As is my way, I stressed too much about stuff that never happened, which drove me to plan appropriately for stuff that did happen (rain, getting a good parking space, avoiding after-show traffic). I didn’t get enough sleep. But the show was fantastic, I slept very soundly Sunday night, and I’m so glad I let Al talk me into going. And yes, I thanked him.

Here’s to what’s left of summer, for those of you in the Northern Hemisphere—or the end of winter, for those down under. I’m taking my annual summer break for a few weeks, and will be back in mid-September. I hope you can make your own great memories. Carpe diem.

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: anxiety, body-mind balance, resilience, travel, vacation

Great Escape

Evelyn Herwitz · July 23, 2019 · 9 Comments

As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of all.

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, Touch Tagged With: finger ulcers, hands, managing chronic disease, Raynaud's, resilience, travel, vacation

Home Alone

Evelyn Herwitz · May 28, 2019 · Leave a Comment

Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets 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.

Image: Vlad Tchompalov

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

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

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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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