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Reflections on the Messy Complexity of Chronicity

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Pilates

Shall We Dance?

Evelyn Herwitz · January 15, 2013 · 2 Comments

When I was in ninth grade, I talked my best friend into taking a modern dance class together. We met one afternoon a week in the gym of a nearby elementary school, where we wore black, short-sleeve leotards and danced to Crosby, Stills & Nash’s Wooden Ships.

The opening moves involved balancing on your right foot, with your left leg bent to the side, toe touching right knee, your arms raised and hands pressed together to form a diamond shape around your head, as you swayed back and forth. This I can barely do anymore. But I still remember the dance, leading the front row in a recital, jumping into an impromptu rendition at a friend’s pool party when the song floated into the mix, moving with ease and grace to the music.

I always wanted to take dance lessons as a kid, but our mother, like most of her generation, was not interested in playing after-school chauffeur or paying for multiple classes. I had violin lessons, and that, in her book, was enough. So, as an adult, I began to make up for lost time and took a dance class here and there–intro ballet, a little jazz, even some disco back in the early ‘80s. At some point in the ‘90s, Al and I took a few ballroom classes.

Still, I was just dabbling. Every time I’d go to a dance performance, I’d daydream about being up on stage. But my body was getting stiffer and weaker, from scleroderma and a general reluctance to exercise. I’ve never been athletic or very coordinated, and about my only exercise, for years, was trying to keep up with my growing daughters.

Things were getting so bad that I was beginning to hunch up like a little old lady, always hugging myself against the cold that causes my Raynaud’s to flair. So about five years ago, I had a talk with my rheumatologist about how I really needed to get regular exercise. He advised me to pick something I really loved doing, because I’d have an easier time sticking with it.

My first step was Pilates, which has become a weekly life saver, strengthening my core and improving my flexibility and range of motion. Then I decided to try and dance again.

I started with an evening intro jazz class at a North End Boston studio. It was a near disaster. The class was far from introductory, more like an advanced beginner level. The teacher was beautiful, very talented and rapid in her instructions. The other students memorized the floor movements and combinations easily. I could barely get my body to move the right way, let alone remember all the steps. It wasn’t just my lack of experience or weak muscles. My brain simply couldn’t hold all the information and communicate it to my arms and legs.

At the end of the first class, I went to the teacher and started crying, because I so wanted to dance but found it so confusing and difficult. She listened sympathetically and gave me some great advice: Don’t compare yourself to others. Focus on one thing each class to improve. This is about your personal best. It takes time to learn.

For the next two years, I kept at it, switching to a class run by the studio director that was a bit slower and more to my liking. But still, even as I loved the music and moves, jazz was just a bit more than I could handle. So I decided to switch to a basic modern class at a different studio, this time in Cambridge. This worked well for several sessions. Whereas jazz, like ballet, embodies flight, modern is all about gravity. Fewer leaps. More feeling your weight, connecting to the floor.

And yet, after a couple more years, I found that I still couldn’t keep up. Too much balancing on toes and one foot. As my feet have deteriorated from scleroderma, the fat pads have thinned significantly, and I just can’t put that kind of pressure on the balls of my feet. Even slipping a pair of soft orthotics into an old pair of jazz shoes wasn’t enough to help me balance.

So for the past six months, on Thursday nights in Cambridge, I’ve been taking Middle Eastern belly dancing. Now, it took me a while to try. I’d been contemplating the idea for at least a year. There are so many lewd stereotypes about belly dancing that I had to get past. But I was drawn to the form by the basic fact that, at an intro level, it doesn’t involve balancing on your toes. And I liked the music. And it sounded like fun.

My expectations have been met, and then some. The music is great. My teacher is a wonderful dancer and performer, very experienced, excellent at breaking down the many isolation movements that are part of this most graceful and sensual art form. By the end of the hour, I’m usually sweating from the workout. It dovetails well with Pilates to strengthen my core muscles.

Best of all, I’m beginning to be able to move my body in ways I could have never imagined were still possible. I can snake my arms and wrists. I can swirl a veil. I can do figure-eights and hip bumps and shimmies. I can feel the music and move with the rhythm. And I feel good about my full figure (belly dancing is the one form of dance that rewards you for those extra inches).

In fact, it’s that last point that is perhaps the most important. Scleroderma is a disease that locks up your body, distorts your face and hands, and makes you feel ugly. Belly dancing, reconnecting with your sensuality, is about as far from that as you can get. I can’t think of a better antidote.

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 Tagged With: body image, dancing, exercise, Pilates, Raynaud's, resilience

Monday Night Pilates

Evelyn Herwitz · February 14, 2012 · 1 Comment

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We’re lying on our backs, the four of us, each on a black padded platform carriage called a reformer, our legs extended at 45 degrees, our heads and shoulders curved forward, straight arms pumping alongside our torsos, hands in straps that pull against a combination of springs and our own body weight, doing The Hundred.

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Welcome to Monday night Pilates. Our instructor calls out the count. We pump and breathe in unison, shew-shew-shew-shew-shew, trying to keep our backs imprinted flat against the platform, trying to move our arms without moving the carriage, trying to suck in our guts and keep our legs up and not strain our necks.

I’ve been taking Stott Pilates for about four years now, ever since I decided I was losing range of motion and hunching my shoulders so much to keep warm that I was beginning to look like a little old lady. I’ve worked my way up from introductory mat classes to the reformer, which looks a bit like a medieval torture contraption. But I actually like the workout—especially once our hour is done.

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My classmates range from forties to seventies, all moderately fit, and we enjoy kvetching and an easy camaraderie as we sweat and strain. Our instructor, a former Air Force Academy gymnast and competitive ice skater, is just the right combination of tough, precise and caring. She pushes us to the point of exhaustion, but also offers me creative modifications for any move that my joints won’t allow me to do.

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Halfway. Around this point my head feels like it weighs a ton and I struggle to keep it raised. But I keep pumping. And wondering, why am I doing this to myself? I used to hate gym.

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But the workout is essential. If I miss a week, I feel it the next. And if I miss two weeks, I start feeling crummy. Keeping my joints moving and my muscles strong and my posture aligned make a huge difference in my ability to get through the day, sleep well at night and stay positive about my health and whatever other stress I’m managing.

Plus, it makes me feel mighty. I never exercised seriously growing up. Here I am, 57 years old, with all sorts of crazy ailments, and I can kick butt. Sort of.

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I stare at my thighs and wonder why, with all this exercise, I can’t get rid of the cellulite. Pump-pump-pump-pump-pump. My neck feels like it’s going to snap. Our instructor always says we can put our heads down if we need to, but I don’t want to cave.

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Almost there. Keep going. Sometimes she forgets the count and skips a set of ten. No such luck tonight.

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We bend our legs to a table-top position and squeeze our bodies like a fist, then, relief, roll our heads down and lower our feet to the platform.

I adjust the platform tension and check the clock on the wall. Half-an-hour to go. Next, front rowing, bicep curls, tricep presses, I’m getting stronger, my muscles are shaking, shew-shew-shew-shew-shew.

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 Tagged With: exercise, Pilates

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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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