Showing posts with label epilepsy community. Show all posts
Showing posts with label epilepsy community. Show all posts

Wednesday, September 13, 2017

Aiyana

Photograph by Carl Jackson
cbjphoto.com
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This morning I quoted a Haitian proverb that I remembered reading way back in an article about the great physician Paul Farmer.

Dey mon, gen mon (beyond mountains, there are mountains)

It became the title of a book by Tracy Kidder about Farmer and his work in Haiti. I was talking to Carl, the Bird Photographer that I love, who is currently in Houston helping in some of the clean-up going on there after the terrible hurricane two weeks ago. It is, as you can imagine, nearly insurmountable work.

Some interpret the proverb as meaning there are inexhaustible opportunities. Others say that surmounting obstacles gives you a better view of the next.

I am so grateful to Carl and his friends for doing this work, these acts of love.

As I type this, it's only been an hour or so since a young girl, one of our beautiful and close-knit epilepsy and cannabis community here in southern California, was rolled into surgery to remove her organs for donation to those who need them. Aiyana was admitted to the hospital a few days ago and put on life support, her brain unresponsive, perhaps from a seizure or some other hideous complication of the rare disorder she had suffered from her entire short life. She was a radiant child, her mother a goddess. We are all bereft to lose her and know her mother's and siblings' heartbreak, yet are also filled with the most encompassing kind of love that you can imagine, the kind that comes from witnessing and abiding with suffering and unconditional love.



So many obstacles, yet love is endless.

Dey mon, gen mon

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