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Reflections on the Messy Complexity of Chronicity

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exercise

A Walk in the Woods

Evelyn Herwitz · October 13, 2015 · 2 Comments

The leaves are turning later this autumn. Warm weather through September has delayed our annual New England spectacle. The sugar maples are just beginning to splash streets and forests with their glorious golds and oranges and crimsons. And the brightest leaves are just beginning to fall, as they must, as the flow of sap slows and the trees harden off for the winter ahead.

photoWith the trees’ annual cycle of endings have come losses for friends. Three have bid goodbye to parents in the past few weeks–aged 89 to 98. It’s been a time of cooking for shiva meals, joining in evening prayers, hearing stories of long lives, well lived. The last funeral was yesterday, October 12.

Yesterday would have been my mother’s 93rd birthday. She died 16 years ago. She always enjoyed the fall. As leader of our Girl Scout troop when I was in grade school, she took us on camping trips in the woods, where we would sleep in big canvas tents pitched over wooden platforms. I’m sure those adventures nurtured my love of walking in the forest, especially at the height of autumn.

I was thinking of her as Al and I hiked in a nearby state forest on Sunday. My joints began to ache and my legs were heavy by the time we emerged from the trails, but the view and the scent and the refreshing air were worth it. So, Mom, these pictures from our hike are for you. Rest in peace.

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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, Mind, Sight, Smell Tagged With: body-mind balance, exercise, mindfulness, resilience

52 Pick-up

Evelyn Herwitz · September 22, 2015 · 2 Comments

Sunday was one of those Goldilocks-and-the-Three-Bears kind of September days—not too hot, not too cold. Just right. The sun was shining, the sky was blue, the air had a crisp edge and there was a pleasant breeze. Perfect weather for combining exercise with a fun outing—a mile-and-a-half walk to the annual fall arts-and-crafts street festival in my hometown.

chalk heartAl and I set out around 2:30 with a goal of finding a wedding present for some young friends who are getting married next month. As we walked along shaded streets, he noticed a plastic strap, the kind that binds packing boxes, lying near the curb. He picked it up.

“Please don’t collect any more litter until we’re on our way back,” I said.

“I have a halo,” he said, placing the packing strap around his baseball cap. I had to laugh. We continued on our way.

Al makes a habit of cleaning up litter wherever we go. This used to drive me crazy, but I’ve made my peace with it—just his way of being a good citizen and tending the planet. He’s promised me he won’t pick up cigarette butts or food. And he washes his hands thoroughly when we get home. This is the one piece I insist on, so he doesn’t pick up germs or spread them to my hands.

Soon we reached the street festival and poked around hundreds of booths selling jewelry, photos, ceramics, skirts sewn from recycled T’s, henna painting, candles, soaps, jams, weaving, hand-spun wool, recycled sweater mittens, hand-turned wooden bowls and more. We ran into friends. We watched a fencing exhibition, a West African dance demo, a juggling unicyclist. I stopped to draw with sidewalk chalk. We found a wonderful local artisan whose woodworking we admired for the wedding gift. Al bought a ceramic snail; I found a burgundy fabric purse for evenings out.

On the way back, Al pulled out the plastic shopping bags he’d stuffed in his back pocket and began picking up litter. There was no shortage. Plastic water bottles were abundant. He scooped up soda cans, cigarette cartons, aluminum pastry trays, plastic bottle caps, random bits of paper, nips bottles. I started spotting for him—a plastic bottle stuck in a stone wall, a whisky bottle, lids from drinks. Really, it’s astonishing when you start paying attention, how much trash people toss on the street without thinking about the consequences. I’m sure a cultural anthropologist could draw some interesting conclusions. But, basically, a lot of people are just plain careless.

We moved to the side to let a couple pass us on the sidewalk. “That’s so great that you pick up litter!” said the woman. “Thank you!”

Al just smiled and kept going. He separated recyclables from garbage and emptied one plastic bag in a park garbage can along our way, then refilled the bag as we walked. By the time we got home, he had collected dozens of bottles and cans for our recycling bin and more trash for Monday morning’s pick-up.

I commented that there was hardly any litter on our street. “You’ve probably picked it all up!” I said. Al laughed. He went straight to the bathroom sink and washed his hands with plenty of soap. He’d lost his halo earlier. But, not.

Gotta love him.

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, Touch Tagged With: body-mind balance, exercise, hands, managing chronic disease, resilience

Walk This Way

Evelyn Herwitz · August 18, 2015 · 1 Comment

Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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.

Photo Credit: Francesco Maglione 

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: exercise, feet, managing chronic disease, mindfulness, resilience

Two Steps Forward, One Step Back

Evelyn Herwitz · June 23, 2015 · Leave a Comment

I made good on my exercise commitment last week—I got to the fitness center twice, once for my barre class and once to ride the stationary bike for 25 minutes, plus I took half-hour walks on two other days.

Then I developed an ulcer in the nail bed of my left big toe. It’s infected. I have no idea how this happened. I am meticulous with skin care. It might have been as simple as picking up bacteria while walking around in sandals. Or just bad karma.

So, I’m back on antibiotics, limping a bit, carefully testing pressure on my left foot. I was able to walk around the block on Monday and get through most of the exercises in my barre class last night.

This is the minutiae of living with scleroderma. Just when you think you have everything in balance, something kicks it out of whack and you have to recalibrate.

But there are much more important issues in the world than an infection in my big toe.

On Sunday, at Al’s initiative, I joined my husband, our rabbi and cantor, and about a dozen other members of our synagogue at morning services at the local A.M.E. congregation. We came to show solidarity over the tragic shootings at the historic Emanuel A.M.E. Church in Charleston, S.C., last week.

Al had called ahead, the previous Friday, to ask if it would be okay with the pastor if we came. We were welcomed with thanks and gracious hospitality. Other members of the community came as well, in a spontaneous show of support. It was heartening to be part of a mixed sea of faces, all gathered to assert that what happened in Charleston was terribly wrong, that we care, that we must pull together as a society to end the violence and bridge the widening racial divide in this country.

Will any lasting good come of all those people, from different backgrounds, gathered together in prayer on a Sunday morning? I cannot say. But I know we helped to comfort our neighbors and sent good will out into the universe, and that must count for something.

After the service, we went out with friends for a Father’s Day brunch, then to the art museum, then home. Al mowed the lawn. I lay down and rested my sore foot.

My toe will heal, albeit slower than I want it to, with a combination of medication and careful tending. I will get back to my exercise plan. There will undoubtedly be other physical setbacks, but I’ll deal with those, too.

Would that our nation’s ills could heal as readily.

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.

Photo Credit: Stròlic Furlàn – Davide Gabino

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Filed Under: Body, Mind, Touch Tagged With: body-mind balance, community, exercise, feet, managing chronic disease, resilience

Pep Talk

Evelyn Herwitz · June 16, 2015 · 4 Comments

No getting around it. I need more exercise. One weekly barre class is just not enough to stay in shape. Ever since Ginger died this winter, I haven’t been as good about taking a walk every day—no furry muzzle bopping my hands off the keyboard when it’s time to stretch and get out of the house. And I haven’t felt motivated to go to the gym. It’s chilly and impersonal and the three large flat-screen TVs broadcast an endless stream of bad news, too depressing.

But a visit with my cardiologist last week and my lead rheumatologist on Monday made it quite 2078973271_3307fc3441clear that I will feel a whole lot better if I move more. It’s critical for my longterm health and well being. (Not to mention body image—without Ginger’s nudging to walk regularly, I’ve put on five unwanted pounds since February—all below the waist.)

This has all been complicated by two issues: the fact that if I exert too quickly, I get short of breath due to some physiological complications of scleroderma, and the fact that my feet, despite all my efforts to find the right shoes, tire easily. They’re really sensitive from thinning fat pads, also due to scleroderma.

After long conversations with both trusted physicians, however, the bottom line is this: my body is high maintenance, but if I’m mindful of the boundaries of my endurance, the more I exercise, the more I’ll be able to endure.

So, I basically have to get off my butt and work out for a half hour at least three days a week.

I know I could listen to audiobooks or podcasts or music. But I’d rather read while I exercise. I have a backlog of books and New Yorker magazines. So my first strategy is going to be to try to read while I use the stationary bike. The treadmill is another option, but if I want to go easy on my feet, the bike may be a better bet.

Neither of these options sound thrilling. They don’t call it a treadmill for nothing. And a stationary bike is, well, stationary. But I can’t ride a regular bike anymore because of the pressure it puts on my wrists. So, I have to make the best of what I can actually do.

Another psychological obstacle to overcome: I will never look like all those pictures of buff, attractive people that decorate the fitness center, supposedly as motivation—”This could be you!” Nope. No way. In fact, I think those images do more to discourage me, because the ideal is so far beyond my reach. 

But the reality is that striving for an ideal body is so not the point. This is about building endurance, feeling more flexible and confident. Trusting myself that, even if I have this damn disease, I can still be physically strong.

My cardiologist said I shouldn’t overdo it, and there’s no need to do big, strenuous routines on the bike or to run on the treadmill. Just listen to my body and do what I’m comfortable doing, to start, and work up from there.

They convinced me. I know I have to. And who knows? Maybe I’ll surprise myself and actually enjoy the gym. Stay tuned. . . .

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.

Photo Credit: Harry Pujols

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body image, body-mind balance, exercise, feet, 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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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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