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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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body-mind balance

Clued In

Evelyn Herwitz · February 21, 2017 · 1 Comment

All day long, I think about words. For a writer, they are my lifeblood. Sometimes, my head feels so full of words that I need to do something, anything, nonverbal. Walking helps. So does weaving or sewing—making something with my hands, however challenging that may be.

But one of my favorite ways to relax is to immerse myself in words and more words—doing The New York Times crossword puzzle. I used to limit myself to the Sunday crossword because we have a print subscription to the big, hefty weekend edition. Then came the 2016 presidential election. I decided I needed to support a free press more actively and bought a digital subscription to the Times (as well as The Washington Post).

My Times subscription came with an added bonus—a reduced digital subscription to the crossword app. Why not? I thought. I need a break from all the bad headlines.

Doing the daily crossword has now become something of an addiction. There’s the Monday crossword, an easy start to the week that I can finish in about ten minutes. Tuesday is usually a snap, too. The puzzles get harder by midweek and can be a real challenge by Friday. Saturday’s puzzle is almost always a stumper. Sunday is a crapshoot. Sometimes I get the theme right away; others can take a few days to finish.

Aside from being a welcome distraction from upsetting news (which I certainly understand better, now that I’m reading more comprehensive coverage, but wish this weren’t such a disheartening civic responsibility), the crossword’s digital version has an added bonus: It’s so much easier to complete with a stroke of my laptop keys than to write in with pencil. My hands don’t get as tired. I don’t have to struggle with a smudgy eraser (no, I’m not one of those pen-wielding crossword purists).

This is especially true for the Sunday puzzle. A few years ago, the Times switched format to a semigloss paper stock, which I find incredibly difficult to write on. It requires far too much finger pressure to inscribe anything legible on it, and the light reflection off the paper makes it hard to see what you’ve written. Fine for magazine photos, not for Number Two pencils and bifocals.

The downside of the digital version: It’s much more tempting to cheat and look up answers on the Internet.

To avoid that downfall, I’ve invited Al, my crossword ninja, to do the puzzles with me. He has an uncanny ability to decipher clues. And it’s a fun way to relax together in the evening.

Who knew that “fake news” wars could have such a delightful side-effect?

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: anxiety, body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience

Parallel Universe

Evelyn Herwitz · February 14, 2017 · Leave a Comment

About thirty years ago, when we had our first dog and no children, in our first home, we were robbed.

We didn’t actually know it until a police officer came to the door that evening. Earlier in the day, the thief had shown up at our bank with a forged check he’d snitched from the middle of our checkbook. Unfortunately for him, but fortunately for us, an off-duty cop was at the bank when he pulled his stunt—and recognized him.

We were shocked. Sukki, our lab-springer-golden mix, had apparently welcomed him with a friendly wag of her black-and-white tail as he went through our desk drawers and my jewelry box. Not only did he steal the check; he also fenced some of my jewelry, a pearl necklace from Al and a gold charm bracelet that my grandmother had given me. But at least he didn’t steal our bank balance.

Maybe a year later, we went to the county courthouse as witnesses in his trial. Let’s call him M. We met a few other victims. To the best of my recollection, one of them told us that M had stolen a TV set and then called a cab to take him home. Needless to say the guy had bad judgment. He was a crack addict. We waited around for hours, only to learn that the case had been plea-bargained, and M would soon be sentenced.

Since that time, every so often, we receive letters under the Commonwealth’s witness protection program about M’s whereabouts in the correctional system. He would move from minimum security to medium security and back again, fail to achieve parole over and over. For three decades. About a month ago, M came up for parole and actually made the cut. I have to admit, I was both astonished and a bit glad for him. Thirty years is a long, long time to be in prison. But I was not optimistic. (I am not in the least concerned that he would reappear at our door since we moved so many years ago.)

Sure enough, on Monday I got another letter from the Massachusetts Executive Office of Public Safety and Security. M was back in temporary custody “due to a possible violation of the conditions of parole.” I’m guessing that he must have sabotaged himself. Think of all that has changed in the past three decades. How would any of us be able to adjust to the outside world after spending all that time in the structured, restricted, but in-its-own-way-predictable prison system?

In some ways, I measure my life against M’s. Since he’s been behind bars, I’ve lived with my own sentence of scleroderma, which emerged a few years before the robbery. But I’ve been fortunate—with excellent medical care, a supportive family and a lot of luck, I’m living a fairly healthy life, all things considered. I’ve raised two daughters, built a successful career, pushed the envelope on discovering what I can still do despite medical constraints.

M remains mired in a dismal life. Some of that is surely his own doing. I wonder, however, what real support he’s had in trying to turn himself around. I think he was about my age when he went to prison. He’d be in his 60s now.

I don’t have an easy conclusion for this one. It would be too facile to say that we each make choices in how we meet life’s challenges. I know nothing of M, other than the occasional progress reports (or lack thereof) that we receive in the mail. We never saw him at the courthouse all those years ago. Suffice it to say that incarceration is as much a state of mind as a prison is a fortress of cement and stone and barbed wire.

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: Christian Bardenhorst

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience

Oasis

Evelyn Herwitz · January 31, 2017 · 2 Comments

I’m finding it difficult to write about anything other than the chaos in the world, in our country, in my heart. So what I’m sharing today may seem odd. But we chose to immerse ourselves in art and floral arrangements at the Worcester Art Museum’s annual Flora in Winter exhibit this weekend. I’m grateful that I have the opportunity to do so. It is, indeed, a privilege.

Inspiration, courage, solutions, just finding the next step can become clearer when you give yourself the chance to find beauty in the world. I share these with you, Dear Reader, in hopes that you will find inspiration, too.

“The Blue Bowl” by Roger Fry

Hand-drawn mock-ups of Ed Emberley’s “Drawing Book of Animals”

“Selma to Montgomery March, 1965” by James Karales

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 Tagged With: anxiety, body-mind balance, managing chronic disease, resilience

Ain’t That a Groove

Evelyn Herwitz · December 27, 2016 · Leave a Comment

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Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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: Hoàng Duy Lê

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Filed Under: Body, Hearing, Mind, Smell, Touch Tagged With: body-mind balance, finger ulcers, how to stay warm, managing chronic disease, Raynaud's, resilience

Stand Tall

Evelyn Herwitz · December 20, 2016 · Leave a Comment

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My posture has been lousy of late. Maybe I’m slouching in front of the computer too much. Or maybe it’s because it’s been too cold out and I’ve been fighting with a recalcitrant ulcer on my left ankle that’s made it harder to take a daily walk. Or maybe it’s just the collective weight of so much discouraging and downright frightening news that feels like a barbell on my shoulders.

Whatever the cause, I need to remind myself to straighten up, stretch my spine and hold up my head. Can’t face the world with a chronic stoop and cower. Nope. Especially not now.

So here’s my antidote, just in time for the holiday weekend: three gifts of inspiration that I share with you. I hope you enjoy these as much as I did when I discovered each one—and that you find yourself walking a little taller, stepping a bit lighter, as a result. And please, pass them along to anyone who could use a little uplift, too.

  1. Artist Christine Sun Kim’s TED Talk: The Enchanting Music of Sign Language
  2. On Being with Krista Tippett: Interview with Vincent Harding, Is America Possible?
  3. Tap v Irish Step Dance (Sorry, couldn’t find the origin of this YouTube video, but it’s a great performance!)

May your holidays be blessed with good company, much laughter, health and peace.

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: Ian Schneider

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, 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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