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Category: CRPS/Rare Disease

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5 Services for normal people that help manage life with chronic illness/disability

I’d like to think that despite my pain, I’m pretty much independent. But, I wouldn’t be if I couldn’t outsource some of the more taxing responsibilities of adulthood. For a long time, I judged myself pretty hard for using these services. I just wanted to be able to live an adult life like everyone else. Turns out, able-bodied adults need backup too. And their need for options has made my life 1000x easier.

I am including referral links/codes in this post. I don’t make money, but do get a discount in return if you purchase through them. You are not obligated to use my code if you want to try one of these services! Google and get the best discount you can find ūüôā

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photo of a neon sign that says "this must be the place"

Ice cream for dinner is the adult thing to do

Why, hello old friends. That is if you still come visit round these parts.

I didn’t really know what to do with this corner of the internet any more and every time I came back, it felt like a false start. Why should I write anything? I’m not really an expert at anything “lifestyle”. I dropped out of fashion school and I’ve been wearing winged eyeliner since the day I discovered liquid eyeliner was a thing. If we were talking, there would likely be lipstick on my teeth from the funny way I talk.

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Mary Fran on Rare Disease Day 2018 | Show Your Rare

Reality is rarely what it seems

Some days I think the only thing I truly know is pain. CRPS has been the the biggest thing in my life for the nearly 8 years that I have known what it was. It is the thing that forces me to overcome hurdles that are normal people Thursdays. In honor of Rare Disease Day‘s campaign to show your rare this year, I thought I would write about an ordinary day, a day whose only remarkable feature is that it is a day, seen through the lens of CRPS. Read more

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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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.