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mary fran wiley | two years later and im still dancing

In Motion – Two Years of Dance

I like milestones. I like looking back and seeing just how far I’ve come.

Especially because this milestone. Yesterday was the one year anniversary of Mary Fran 3.0. It’s been 366 days since my shiny new cyborg parts.

But more importantly, it’s been just over two years since I took my first tentative steps into the world of dance.

This post is sure to get a little lengthy, I’m reflecting on what all my teachers have taught me in the past year. For the TL;DR version, just watch the video (after the break). Read more

Life with a rare disease

The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

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Little Moments of Happy

These are turbulent times. I can’t look at the news or Facebook without discovering something new that makes my stomach churn or my heart sink. I read stories about power and privilege, most often highlighting not only their existence but of some new abuse. I see stories of men making lewd comments to women because they can and stories of immigrants being detained at airports despite having been given prior permission to arrive. I am reading about men deciding what women should do with their bodies and walls that will cost billions of dollars and increase hate.

All this pain and anxiety in the world is making every day a little grey. As rights and freedoms dissolve in front of my eyes, reality is zapping the joy from my soul. Read more

Sky Above Clouds IV by Georgia O'Keefe at the Art Institute of Chicago

Inspiration Seeking : A visit to my favorite painting

I had a pair of epically bad days. Self inflicted bad days – the worst kind of personal abuse. I’ve been unemployed for 6 weeks, and it really hit me like a kick in the gut. So I did what I normally do to get out of a funk. I made blondies and paella. I went to ballet. I took an epsom salt bath with some rose essential oil. I tried to go back to a favorite tap class I hadn’t been back to since surgery, at some point in that calls I lost all the feeling in my right foot again. And just like that, the thing that was supposed to lift me up, dragged me even farther down. Read more

Radiate Goodness | A poster from the Chronic Positivity Project by Mary Fran Wiley

Radiate goodness.

This is the story behind the 54th poster in my Chronic Positivity Project, “Radiate Goodness.”

Radiate Goodness | A poster from the Chronic Positivity Project by Mary Fran Wiley

Those words. They were the closing sentence on a poignant post about the Pulse Nightclub shooting in June, and they’ve been stuck in my head ever since.

I can recall the first time I encountered terrorism. I was 16 and standing in front of a Monet painting at the Musee d’Orsay in Paris, absorbing all I could from each brush stroke. I was seeing what I couldn’t see in an art history book and I was in heaven. Out of nowhere, French police were herding museum visitors in lines to the exits as quietly as a building evacuation could be. We were speculating about fire drills or faulty fire alarms as we abandoned our tour and headed for the exits.

My French was good, but not good enough to understand everything that was being said around me. I was confused as were most of the guests. It wasn’t until we were outside that we finally heard what was happening – someone had called in a bomb threat to the museum.

No one used the T-word that day. There were no explosions. I had no idea what might have been. I was a teenager mad about about missing out.

Just over a year later, I watched in horror as planes flew into buildings. I sat on my porch with my family listening to fighter planes flying over head. I felt the world change around me. A day like that doesn’t just get brushed away. It was terrifying. It was overwhelmingly sad. And it keeps happening.

I’ve watched in horror as terrorists have brought guns to movie theaters and churches. I’ve been angry as they shot children and people out to celebrate. A hate monger is running for president. Hate seems to have bubbled up just about everywhere I look.

But if you look past the headlines, you can see healing. People offering to ride public transit with Muslim women in Australia. Counter-protesters with angel wings blocking the nonsense of the Westboro Baptist Church.

The point? In all this darkness, you need to be the light. Small, quiet gifts of hope add up and don’t cost a thing.

Radiate goodness.

 

 

I’m a survivorina, so I’m starting hope.dance

Survivorina is a hashtag I discovered on Instagram. Dancers who are dancing despite what life has done to their bodies. When I found them, I found a tribe. It made ballet feel even more right.

I’ve mentioned a few times that ballet saved my life. That learning how to move again gave me freedom from my pain and the confidence to get stronger and continue fighting for a better quality of life. Now,  I want to help others with pain disorders have that chance.

I had seen mentions of dance programs for Parkinson’s disease and adaptive dance programs for Autism. Then, on World Ballet Day, I caught a segment on the Ballet for Parkinson’s program from the English National Ballet. A seed was planted.

As I started talking to people about this idea, it started to become real. Friends and family started sending me other Youtube videos of ballet companies doing workshops or classes for children and adults with disabilities. Others had done it, I was determined to make it happen for people like me. People who might be afraid to walk into a dance class and tell the teacher that they can’t jump or that their body doesn’t move quite the same way others do.

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The organization

I want others to experience the joy of dance. I want to create classes that someone suffering from chronic pain can walk into and still feel like they are learning ballet or tap. I want to help teachers know how to teach to those limitations.

Right now, I have a dream, a name and a mission statement.

Hope.dance aspires to create dance programs rooted in classical dance forms that allow sufferers of chronic pain to develop confidence and strength while creating escape from the realities of constant pain. These dance classes give participants a chance to be expressive and creative and instill a sense of freedom that participants may no longer find in their daily lives due to their conditions.

Moving forward, I have to find instructors, partners and students. In the mean time, you can support the organization by buying a shirt, contributing via GoFundMe, liking it on Facebook or signing up for the newsletter.