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Reflections on the Messy Complexity of Chronicity

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Another Year Older

Evelyn Herwitz · April 21, 2015 · 2 Comments

I had a wonderful teacher in the first grade. Her name was Miss Kelly, and she had short, curly dark hair, a wide oval face and a big smile. She also seemed quite tall, although I wasn’t a reliable judge of height at that age. And she created fun class plays.

Crane BeachThat year, we performed what would now be described as karaoke. Picture a group of six-year-olds singing and pantomiming on stage to musical hits, circa early Mad Men, and you get the idea. (“How come everyone is laughing?” I remember wondering during our performance.)

I haven’t thought of that first grade play in years, but for the past couple of days, one of our songs arose, unbidden, from the recesses of my gray matter and has been cycling through my head—Sixteen Tons, sung by Tennessee Ernie Ford.

You load sixteen tons, what do you get
Another day older and deeper in debt. . . .

It was my birthday on Saturday. Fortunately, the debt part isn’t what brought the song to mind. But another day older is how I felt, for better or worse.

“Are you excited for your birthday?” Mindi asked me a few days before.

“I don’t know. I guess so,” I replied. After turning 60 last year, 61 seems a bit anti-climactic. And there’s something about adding the 1 to the 60 that tipped the scales toward the “older” side of the equation.

When the day arrived, however, I was in a great mood. Something magical always happens to me on my birthday, a feeling that the day is different, special, blessed. The weather was perfect—70s, sunny, azure sky. Flowers that had been hiding for months suddenly dotted lawns up and down our street. On my walk back from Shabbat services at our synagogue, I noticed violets, always a spring favorite.

That evening, to celebrate my birthday, Al and I drove to a dinner concert in a small town in northern Worcester County, at a restaurant venue that draws class acts from around the country. The show did not disappoint: Michael Allman, son of Gregg, performed amazing R&B and Allman Brothers’ classics with Charles Neville of the Neville Brothers on tenor sax and Jeff Pitchell, an outstanding blues guitarist. I was transported back to my freshman year of college, when Sweet Melissa, Midnight Rider and Whipping Post blasted from stereos in every dorm.

Continuing my birthday weekend the next day, after brunch with friends, we drove an hour-and-a-half to the North Shore, to Crane Beach, beautifully maintained by the Trustees of Reservations, a great conservation organization here in Massachusetts. It was chilly, the water was a deep blue and the air, crisp. But I’d forgotten my hiking shoes in our haste to leave, I should have brought an even warmer coat than the one I had, and the latrines were—well, gross is an understatement.

So I was pretty cranky as we set out on our beach walk. I love the beach in any weather, but I couldn’t appreciate it, at first. After grousing to Al as we walked a ways, I plopped down on the sand while he explored closer to the water (he, of course, was quite comfortable walking barefoot while I was all bundled up and still chilly) and lay back to absorb some sunshine.

The break helped lighten my mood. Soon I was exploring patterns in the rocks and the soft shadows left by footprints in the sand. I took some pictures. Al strolled ahead to inspect what was beyond the next curve in the shoreline. We passed other spring beach-lovers, some in winter jackets and walking shoes, others in shorts and flip-flops. I drew my layers closer to ward off the stiff breeze and kept on walking.

Crane Beach EstateAl noticed a path leading up the side of the dunes, with a boardwalk. At first, I was hesitant to climb, but curiosity got the better of me, so up we went.

Well worth the effort, as the path led to a grassy expanse overlooking the ocean—blue and green and tinged with beige above sandbars—and a nearby island. When we turned around, we realized that this was the view at the bottom of a sweeping lawn that extended from the hilltop Crane Estate, part of the Trustees of Reservations property.

As we hiked back down to the shore, I began to feel a bit tired. The wind was still stiff, and we had to walk into the breeze all the way back. By the time we finally reached the boardwalks leading to the parking lot, I was really dragging. We made a brief stop at an antiques store (overpriced) on our drive through a nearby town, then found a local restaurant a few blocks away for dinner.

Waiting for our meal, I was quite weary. “Are you okay?” Al asked. “I think so,” I said, though I wasn’t really sure. I was worried. Here we had just walked the beach for a few hours, and I was totally spent. We’re planning a trip to Europe this summer, with an aggressive travel itinerary, and all I could think of was—how am I going to keep up with what I want to see and do?

The meal revived me, though I could only drive half the distance home, and had to trade off with Al after we got on the Mass Pike. “I’m feeling my age,” I told him.

It wasn’t until later that night, after I had showered and gotten ready for bed, that a light bulb went off in my head: It’s hard to walk in sand. It takes a lot of extra energy, especially when you’re wearing the wrong shoes. And it was cold out, and it’s even more tiring for me to walk into a chilly headwind. Yes. Indeed.

So I stopped catastrophizing about our trip, at least for now. I do have to pace myself when I’m physically active. That’s the bottom line. But I can do it. I have to believe that.

In our first grade class play, the one other song I remember singing was I Whistle a Happy Tune from The King and I. We each had a partner, and we took turns singing and trying to whistle along to the music. I’m sure we looked adorably hilarious for all the parents in the audience, but I took it all quite seriously, as only a six-year-old can: 

Make believe you’re brave
And the trick will take you far
You may be as brave
As you make believe you are . . .

Yes. Indeed.

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, Touch Tagged With: body-mind balance, managing chronic disease, Raynaud's, resilience, travel

Spring Tide

Evelyn Herwitz · April 14, 2015 · 2 Comments

Passover is over and the endless winter has actually ended, with only a few stubborn patches of snow remaining. On Sunday, with temperatures hovering in the ’60s, Al suggested we go to the beach. “Great idea!” I said.

So we packed a lunch for the drive and set out for the South Shore, to a coastline we had never explored along Buzzard’s Bay. It was nippy by the water, and I needed all the layers I brought in the car, but so wonderful to see the ocean again. There’s nothing like sea air to clear the senses. Summer can’t be too far away.

Please join me on our hike at Nasketucket Bay State Reservation. . . .

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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, Smell, Taste, Touch Tagged With: body-mind balance, resilience, travel, vacation

One More Thing

Evelyn Herwitz · August 5, 2014 · Leave a Comment

As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

Photo Credit: Éole 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: hands, life style, managing chronic disease, mindfulness, time management, travel

And I Didn’t Get Sick

Evelyn Herwitz · July 15, 2014 · 2 Comments

Sitting in St. Louis’s Lambert Airport on Monday morning as I type on my laptop, watching fellow passengers gather at my gate. Surprisingly, some people are actually sitting and talking with their neighbors, rather than burying their noses in cell phones or tablets. One woman is reading a book. As in, the kind made out of paper.

photo-1But plenty of others are typing on laptops, like me, or talking business on smartphones (loudly—don’t they know others are listening?) or texting or checking emails or playing games on tablets. There are comfy armchairs next to electrical outlets to accommodate all our gizmos. I have managed to get everything into my carry-on and purse, so no worries ahead about losing luggage. I’m getting better at air travel since my trip here last year, when my return flight connected through JFK and my checked bag disappeared for 24 hours.

Despite Midwest heat and humidity, the sky is robin’s egg blue with puffy cumulous clouds. A pleasant end to a lovely weekend with my older sister and family, including a visit to the exquisite St.Louis Art Museum, great meals featuring my brother-in-law’s home-grown vegetables, an al fresco Italian dinner, Shabbat services at a local congregation that felt just like home, sharing the Cardinal’s ups and downs against the Pirates and the Brewers, a Sunday brunch with friends, the World Cup finale, and a drizzly performance of Gershwin’s Porgy and Bess at the outdoor Muny Opera (one hour rain delay halfway through Act 1, and the show was cancelled before the last three songs due to approaching thunderstorms, but even so, the music and acting were terrific).

The highlight of our weekend together was hearing my sister, a talented flutist, perform wonderful music with her woodwind quintet at a local bistro. That, and sharing old family stories. “Are you making that up?” she asked me, laughing, since I can always remember more about the past than she, even as we’re both getting a bit fuzzy about recent events. Ah, the power of longterm memory.

Travel remains a challenge—inevitably, the bandages on my finger ulcers get messy and loose, and I need to manage my energy and joints. Getting through security is exhausting, with all the lifting and sorting, organizing purse, shoes, laptop in gray rectangular buckets and then reorganizing everything quickly so as not hold up the person behind me. But fellow travelers have been very helpful, especially with hoisting my bag into the overhead storage bin and retrieving it. And so far, no one’s been too pushy or impatient.

I also decided to pay extra to fly direct this time, to save wear and tear on my body. Definitely the way to go, when possible. So much less stressful, all around.

Best of all (though perhaps I’m tempting fate, here), I have not gotten sick on this trip as on previous ventures in the recent past. No infected ulcers. No cellulitis. No cold virus. No eye infection. No rotten tooth. My worst physical ailment has been reduced hearing and stuffy ears for about 12 hours after landing. All good, and encouraging.

Travel doesn’t always have to mean setting myself back. It can just mean having a great visit with my Big Sis.

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, Touch Tagged With: travel, vacation

Logistics

Evelyn Herwitz · May 6, 2014 · Leave a Comment

12:15, Thursday morning. I should be asleep by now. I have to rise at 5:10 to get ready and leave the house by 7:00, to drive to New Haven in time to catch the 9:28, so I can arrive in Manhattan in time for an afternoon of meetings, starting at Noon.

This is an experiment. I want to see if I can manage a one-day trip to NYC on business without wearing myself out. But, of course, I can’t sleep, too preoccupied with whether I’ve selected the right outfit for the predicted mix of rain and possible thunderstorms and 70-degree temperatures. If I dress too warmly to ward off dampness, I’ll end up sweating and getting chilled. And if I wear something too lightweight, I’ll freeze, especially if the office has turned on the AC.

When I wake after a meager four hours of sleep, I review the fiber content of the outfit I’ve chosen—a white sweater top that is a mix of silk and cotton, an ivory crocheted cotton cardigan and black wool crepe pants—okay, I’m good. Comfortable and professional, made from natural fibers that won’t trap perspiration, with loose layers to allow plenty of air circulation.

Next step, hands. The night before, I cut all my bandages and dressings to be sure I could take care of my finger ulcers in five minutes instead of the usual twenty. It’s absolutely essential to cover every possible skin crack when I travel, but if I feel pressured by time, I can get sloppy and have to redo the dressings. With everything ready, I relax and neatly prepare my fingers for the long day ahead.

As I do my stretching exercises and get dressed, I rethink my plan for my laptop and decide to shift it from a carrying case to the center zipped compartment of my large purse. The laptop is lightweight, and I don’t want to fumble with extra stuff to carry when I make purchases. I test the arrangement. The purse is roomy enough for easy wallet retrieval, even with the laptop, and remains securely over my shoulder. Check.

After a breakfast of scrambled eggs and toast—need to be sure I have enough protein in my system to stay awake for the two-hour drive ahead—I head out the door. Only 10 minutes behind schedule. Okay so far.

That is, until it starts raining. Not just raining, pouring. And there’s fog, too. I pull over at a rest stop on the Mass Pike to check traffic around Hartford on my cell phone. I have to drive around the city during rush hour on my way to New Haven. There are two ways to go, and I select the one with the least congestion.

This plan works until I get closer to Hartford and find myself crawling at 11 mph on Route 84. Should have left earlier, but no use getting upset now. Nothing to do but sit out the traffic jam. I decide to catch the next train, if need be, and let my clients know I’ll be a half-hour late. I am not going to run through the station and risk getting winded from what my physicians think is exercise-induced pulmonary hypertension. I had a recent, unnerving episode, and I don’t want to push it.

Once the traffic eases and I get onto 91S, I drive as fast as I can without exceeding the speed limit by too wide a margin. More traffic back-up on the exit ramp to New Haven’s Union Station, but, miraculously, I find a space in the parking garage just one level up. There’s a covered walkway to the station, and the restroom is right down the hall, conveniently located for a quick pit stop. Time, 9:12.

Okay, now I just have to buy my ticket and find the train. Only a few people in line at the counter. Ticket in wallet, I walk briskly to the gate, up a long flight of stairs. The train is waiting. Plenty of seats, still. I settle down, take off my raincoat and catch my breath. Made it! Seven minutes later, we pull away from the station.

By the time we reach Grand Central, all traces of rain are gone. I switch to sunglasses as I climb out of the Union Square subway station. People stroll and hustle in shirtsleeves, shorts, flip-flops. Pink crabapples abound. Somewhere, someone is making a loud May Day speech about workers’ rights. Delivery trucks battle for curbside parking. A siren wails down another block. The air smells of car exhaust and felafel and fresh doughnuts. I unzip my raincoat, slip my collapsable umbrella into my purse and head toward West 17th Street. It’s going to be a good day.

Photo Credit: JefferyTurner 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, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, Raynaud's, 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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