Tag: dance

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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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.