October 18, 2011

Head over Heels for Epilepsy: Give a Worthy Cause a Thumb Up

Xavier and Mylene’s story started so perfectly, like a scene from a Hollywood movie; the tragic outcome however was anything but predictable.

He is youthful, charming and full of vibrant energy, and works as an Air France flight attendant. She is a gorgeous 19-year-old dancer and model on a flight to Milan. They chat during the trip, they exchange email addresses and promise to be in touch. In a happy twist of fate, she misses her connection and from then on, they become inseparable and so begins a romance that will take them to all corners of the world.

They know deep inside that they are soulmates. There is something almost cosmic about it, and they often notice how the dates of the significant events in their lives mirror each other. To Xavier, she is an angel of grace, beauty, wisdom and kindness, and they share an idylic life together full of projects, travels and dreams. She studies Ayurveda and starts training to work for the Canadian organisation Jeunesse Canada Monde. A keen amateur photographer, he starts a project of pictures and arm balances around the world.

It was all going so well that it took Xavier a while to figure out that Mylene suffered from epilepsy. She had been taught to keep it under wraps, a burden she had carried her whole life. She knew however that any seizure could be lethal, and so in order to live her life and dreams fully, she would have to somehow ignore her condition. Xavier discovered it during one holiday in Los Roques islands in Venezuela where she experienced a seizure. This was the most terrified he had been in his entire life.

A year later, in June 2008, they went on a two weeks visit to her family near Montreal. One afternoon, she was swimming in a lake and when her brother, her dad and Xavier noticed that she wasn’t coming back, they started to look for her. Xavier found her body lying at the bottom of the lake, and brought her back to the surface. They tried to bring her back to life but it was too late. She was 25.

A few years later, Xavier came across his photography and handstands project and decided to give it another go. He quickly realised that he could use his fantastic energy to raise awareness about epilepsy and called it DOWNsideUP. Arm balances made a lot of sense to him as in his interpretation of what someone suffers during an epileptic seizure; their brain goes ‘upside down’. He wanted to use the symbolism of balances to inspire; whatever the challenge is in life, one could learn how to find continuity in the ups and downs, and to never give up. Headstands and handstands invite one to see the world from a different perspective, and in that way encourage empathy with epilepsy sufferers.

When living with Mylene, Xavier understood how much she suffered from the stigma of her condition and she almost lived in denial of it. His approach with DOWNsideUP is to bolster tolerance towards disabilities by showing the freedom and power of expression of the body, in a world where many people feel trapped in their body.

So, nowadays, whenever this endearing flight attendant stops over somewhere, he takes a few hours to find a good spot for an arm balance. Xavier doesn’t have a photographer attached to the project, so he often finds himself instructing a patient passerby on the perfect angle he wants his picture taken. He also makes wonderful encounters; acrobats, gymnasts, or yogis ready to pose and lend a hand(stand) for this noble cause.

Give DOWNsideUP a thumb up and help his project taking off by spreading the word and liking his facebook page, where you will also find more of his wonderful pictures.

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