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I Photographed Daily Struggles Of A Poet With Multiple Sclerosis
The thing is, 12 years ago, this poet found out he had multiple sclerosis; a disease which had slowly crippled every part of his body. And by then, he couldn’t move a foot one inch to the right without asking for somebody’s help.
Aware that very few people could understand what it was like to live with such an invasive disease, the poet invited my camera into his life, to capture his reality.
There‘s a poet, Michel Pepin, in Montreal who‘s spent the past seven years going out on a busy street to give away his poems in exchange for whatever people would give him
More than the few dollars he would make, it‘s the connection with people he was really after. He just loved to exchange a smile with a stranger
Aware that very few people could understand what it was like to live with such an invasive disease, the poet invited my camera into his life, to capture his reality
We started our journey when he was just waking up, still naked in his bed
Every single step of the poet’s morning routine required the help of a care giver. From stretching his paralysed limbs
To showering
All the way to wiping his own butt. You’re probably wondering how a man can be comfortable having such intimate parts of his life captured on camera, for everyone to see
The poet has seen well over 500 different care givers walk in and out of his life. Intimacy isn’t really something he knows any more. His body is a public entity, the only intimacy our poet has left, is one of the mind
Stuck in his chair, the poet’s life looks like a re-write of The Diving Bell and the Butterfly; his creative mind is free to wander away from the prison of his body. Poetry, makes him free
My images were meant to be displayed alongside his poems; his failing body, alongside his thriving creativity. As I opened a window into his life with my camera, with his words he opened one into his soul
He knew this was likely to make you feel uncomfortable, but as he beautifully puts it:
Our poet is indeed a happy man. A man with a woman in the arms of which he can find comfort
For when he wakes up beside the woman he loves, the disease doesn’t count any more
And love, is a feeling worth sharing
We paired some of my images with his poems, and went back to the same street. People realized the effort it required for him to simply be. He was a gladiator, enslaved to fight against a merciless enemy
And he was winning!
He couldn’t stand on his legs without the help of a machine, yet, like a phoenix reborn from his own ashes, our poet had never stood taller
By doing all of this, he meant to teach us a lesson: “What is essential is invisible to the eye. Humans are like icebergs: your eyes can only ever reveal the tip of who they really are”
And in that man in a wheelchair, handing away poems on a street of Montreal, I found an iceberg that would shadow the one that sunk the Titanic. Who would have thought…
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