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

Via Sophie Legrand
on Oct 18, 2011
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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.


About Sophie Legrand

Sophie is the littlest French hobo. After studying American Literature in Paris, she left France in 1998 to first live in Santa Barbara, California, for a year. She then went to Madrid where she started working in publishing, as a literary agent. After 5 years of movida in Spain, she moved to London. There, she was introduced to yoga by two fantastic teachers, who gave her some very good foundations, a sense of precision and a taste for Asian philosophy. She completed her Yoga Teacher Training in Vancouver in 2011 and is now back to England where she is a proud stay-at-home mom and a yoga teacher. She is also a passionate home-cook with a focus on multicultural, tasty and healthy dishes. Her culinary explorations are on L'Artichaut.


9 Responses to “Head over Heels for Epilepsy: Give a Worthy Cause a Thumb Up”

  1. Nikitayogini says:

    My brother, Remi, died three weeks ago from a lethal epileptic seizure. He has had epilepsy since he and I were 13, and has always been very responsible and organised about it. Always took his medication, and was always safe. So we still don't understand why this particular seizure was the one that killed him.

    We're British, but he had been living in Canada PEI for three years, and had just moved to New Zealand to begin a new job. He was a games programmer. He had been head hunted by both Apple and Google for his coding research skills, but he stayed doing exactly what he loved – using his coding to create games.

    It took exactly 2 weeks and £7k to bring his body home to us. Now that he has been buried, we're waiting for it to actually hit home that he is gone – it still doesn't feel real. He and I shared a double buggy, bunk beds, our toys, friends, memories, secrets – he is/was my best friend. I can't get my head around the fact that he won't be here this Christmas. Or the next. We will not go to the pub and sink too many beers on our birthday. He will never make children that will have his beautiful handsome face or ferocious intelligence. He won't ever meet mine. He will not be at my wedding. We won't see him smile or hear him laugh again.

    Earlier on today I was thinking, we should do something to raise awareness/money for an epilepsy charity – help to fund the research that can prevent sudden unexpected deaths like my brother's. The more money these charities have the more research they can do, the more we will understand, and the easier it will be to protect people with epilepsy from fatal seizures.

    So I was thinking this, and then I came onto Elephant Journal, and came across this story, like the universe sent me here to read it. Like the worlds are conspiring to keep me strong, motivated and focused on my goal.

    By raising awareness and shifting perception/banishing stigma, Xavier is ultimately helping to encourage donations which will fund this essential research and support for those with epilepsy. Thank goodness for people like him.

  2. lilajane says:

    After having three or four seizures a week for months and having no idea what was happening to me, I was diagnosed with epilepsy four months ago. I have chosen to go the route of no medication. There are many stories of a regular yoga practice being of the most benefit in suppressing seizures, even more so than medication. I would encourage Xavier to not only raise awareness and tolerance around epilepsy, but also about the benefits of yoga for those suffering from it.
    (With gratitude.)

  3. Thanks for sharing this with me on my facebook page, Sophie. I'm off to post it on the main elephant facebook page. Cheers!

  4. Kasie says:

    Nikita, my heart goes out to you. As the parent of a 7-year-old who was diagnosed at 11 months old, I'm acutely aware (although not as much as the person who has epilepsy) of its deadliness. Every morning that my kids wake up is a good morning.

    I'm so glad Xavier's raising awareness, yet am disheartened to see the suggestion that yoga is more effective than meds for seizure control. While yoga (and meditation, exercise, and sleeping well) is a wonderful way to keep stress levels low, which can help decrease seizures, nothing replaces a good relationship with one's epileptologist and exploring appropriate medicines. Suggesting that yoga is superior is uninformed, goes against the whole point of the article and continues the perpetuation of shaming those who seek allopathic medical help to treat this very deadly disease.

    I love the fact that Xavier persuades strangers to help! Imagine the amazing karma they receive from this!

  5. Tanya Lee Markul says:

    Thank you so much for sharing this Sophie! Such a tragic yet extremely beautiful story.

    Posting to Elephant Yoga on Facebook and Twitter.

    Just posted to "Featured Today" on the Elephant Yoga homepage.

    Tanya Lee Markul, Yoga Editor
    Join us! Like Elephant Yoga on Facebook
    Follow on Twitter

  6. Xavier says:

    Tricky Universe 😉 Always making us do what it "wants" and not too much what we think we have the choice of doing !(?)… 🙂

    Nikita, Thank you so much for sharing your very moving experience.
    I sincerely wish you can live with the peaceful idea that your brother is well and that everything will be fine…

    According to my experience…
    Yes the absence of unique gentle people is difficult to deal with, yes the "scar" in our heart will stay for ever… never the less, what is true for the body, is true for the mind (and the heart): If we keep at looking and touching at our scar it will hurt for ever… We need to learn confidence in letting go, little by little… by accepting and respecting our pain, our tears (without drowning in them). We need to observe with mindfulness & wisdom how "things" and mind work.
    "Universe" nows … 😉
    I believe we should use in a positive way the best of what life has offered us (no matter for how long the "present" was there).
    So many people live their whole life without meeting truly kind and loving sentient beings…
    If one had this marvelous opportunity, one should deeply learn to be grateful for it and focus on this aspect to take the huge "blessing" given to offer back what has once been given to oneself.
    To me, what "has been", still is… through us… and will continue to be after that…
    This is why what we do about it seems important ! Some say "One is all, All is one" 🙂

    Nikita, how do you see things after these year ?

    Concerning the DOWNsideUP project, THANK YOU Nikita for your support !
    I truly wish it can make a difference & make things change ^_^
    You thank goodness for "people like me" and i'm grateful for you writing this. It brings strength to go on !
    But I also believe that "people like me" wouldn't exist without the Love and Kindness of others.
    On my own i couldn't do all this…

  7. Tanya Lee Markul says:

    Just posted to "Popular Lately" on the Elephant Yoga homepage.

    Tanya Lee Markul, Yoga Editor
    Join us! Like Elephant Yoga on Facebook
    Follow on Twitter

  8. frances says:

    i suffer from epilepsy and i am 24 years old. i was never told to be ashamed of it, but in someways i am. your story touched something that is very true, i believe that people with epilepsy are extraordinary and wonderful just like Mylene, and have an awareness that others don't. for me that is almost difficult to live with because my body is so unpredictable, it almost doesn't feel like my own. and when and epileptic is up they are really up and feel like they could do anything, which is hard because sometimes i think i can ignore my condition and it will go away and the good feeling will last forever and i can be careless. but when a seizure hits it does turn things upside down, not only does it feel like you're upside down but the world around you feels the that way too. however this isn't terrible, it makes you more connected to your body and gives you a sense of grounded mortality, and that maybe there is something bigger than yourself. what I'm trying to say is that Mylene and your story is inspiring and gives epileptics more of an explanation of how it feels to have epilepsy. thank you for doing headstands, i'm going to practice them now.

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