Kelly Daley has been an inspiration to me for the last 4 or 5 years, ever since I read her essay. I’ve shared her essay with many people, and I regret not ever communicating to Kelly how much I appreciated what she had to say. She and her twin sister, both suffering from Epidermolysis Bullosa, died in November of 2006.
Here are a few highlights from the end of Kelly’s Essay (which is Property of the Elie Wiesel Foundation for Humanity)
When I realized that I do know God in knowing love, I became moored.
There are more important things in life than health, though for most people that is their
benchmark, their bottom line (“at least I have my health…”). Having health in body does not guarantee a good life, though it can make it easier to get through. But love, love is what we’re here for, what we’re built for. Love can’t always heal, but it can suffuse us with enough strength to deal with our trials. I don’t look at the big picture. I can’t imagine living twenty more years under the regime of my illness. So I’ve learned to live second to second. I heartily appreciate the details of life: a great belly laugh, a poetic sentence, friends who hold my hands, a really deep breath that finds its way down
to nourish the most inner reaches of me, sunlight warming me, a piece of music that makes my hips swing, a sentiment that makes me cry, a sweet and steamy cup of coffee on a frosty day, my father’s voice on any day…
Julian said, “All shall be well, and all shall be well, and all manner of things shall be
well.” I believe her. The retreat helped me find it in myself to trust in the rightness of my path. In my journal I wrote, “I have hope that all shall be well in the future, but I also feel that even now, in these very seconds that are passing, I am well. I can’t ask for more than that.” If I am not so busy fighting to make things the way I want them to be, or I think they should be, I can live the way I’m meant to. Just because something isn’t perfect doesn’t mean it isn’t sacred.
I bear my burdens by sharing them. I cry them out on the shoulders of my dearests. I sing them out in a manner of civilized screaming. I write them out, which gives them form, sometimes a lovely form, and occasionally turns them into art. I make my ugly and painful sentiments intosomething beautiful on paper.
My wounds are constant and ever-multiplying – but they are also always healing.
I have the unique opportunity to be able to literally watch the body’s capacity for healing itself, and know that my spirit can probably do the same thing.
I choose to live responsibly and consciously. I choose to live. I choose to live fully.
I choosenot to drop into the abyss of despair and depression, and hibernate under my covers and retreat intounconsciousness (even as much as I love sleep). I choose to take risks, and to put myself out there, on the line, over the line.
So now I have told you how I came to keep living my life, and how I learned to enjoy the
graces in it. I have managed to reconcile extreme suffering with a workable faith in a loving God.
The great paradox of my life is that I love it. I have a marvelous life, I just wish I didn’t have to live it through my body.
But seriously, read the entire essay!