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Perils of Celebrity -- "Winning an Oscar Beats Being in an ICU"
By Mark O'Brien <marko@well.com>
Date: 04-10-97
As the subject of an Academy Award-winning documentary, "Breathing Lessons," Mark O'Brien has been faced with the pitfalls of celebrity in recent weeks, especially the media's tendency to believe that only brave disabled people escape from nursing homes. But it also enabled him to imagine God in a tuxedo. O'Brien contracted polio at the age of six and has spent most of the last forty years in an iron lung. His determination to live independently, write and obtain a university degree (he is a graduate of UC Berkeley) gained the support of the then-growing movement for the rights of disabled people. His first book of poems, entitled "Breathing," was published by Little Dog Press in 1987. He is currently completing an autobiography to be published by Kodansha.
I never watch the Academy Awards -- but this year was an exception because I am the subject of "Breathing Lessons," which was nominated for an award.
Not only did I watch, I invited friends to watch with me, and we made a party out of it. When Will Smith announced that "Breathing Lessons" had won for best short documentary, my friends and I just screamed.
I wanted to win for the sake of Jessica Yu, who made the film. She is a good friend and a brilliant director. But I wanted to lose for my sake.
For one thing, I had given too many interviews. As the subject of a nominated film, I had attracted a lot of attention. I heard myself talk about the importance of independent living over and over. But most editors cut this, which was very frustrating.
The whole idea of becoming a celebrity began to seem ridiculous, even damaging to disability rights. It seemed like the more interviews I granted, the more convinced the media became that only brave disabled people escape from nursing homes. The flip side of that assumption is that disabled people who are in nursing homes deserve to be there.
Another reason I wanted to lose is that the idea of celebrity offends my sense of egalitarianism. Why should the trial of O.J. Simpson be more important than any other trial? Why should I be considered any more brave or more charming than any of my disabled friends?
After we calmed down, a friend asked me how I felt.
"Beats being in the ICU" was my answer.
Nine months before, I had awakened in the ICU -- Intensive Care Unit. The electricity that powers my iron lung had failed, and I passed out from lack of air. Just before passing out, I remembered feeling terror. It looked like it was going to d I was going to do and there was nothing I could do about it. When I woke in the ICU, again I felt terror. Where was I? What had happened? Would I live?
Terror comes to remind me I am never in control. That there is never anything I can do to eliminate the possibility of dying. That I have nothing and need everything.
Terror makes me pray. In these prayers, I feel the nearness of God -- the God I ignore when I'm feeling comfortable and in control.
So maybe I was wrong. Maybe being in the ICU beats watching Jessica Yu win an Oscar for making a movie about me. That sort of thinking appeals to my brooding, Irish Catholic side.
But my Catholicism involves more than thoughts of Hell and guilt. Matthew Fox writes about "Creation spirituality," which teaches that we help God to create the universe. We do this through the lives we lead and the art we create.
Fox takes a broad view of art, and refuses to confine the term to music, literature and dance. Conversation can be an art. So can gardening, massage, cooking, telling jokes, raising children. Every constructive, enjoyable act can be seen as an effort that helps God make the universe more beautiful.
So what was I looking at on Oscar night besides a bunch of wealthy egomaniacs congratulating themselves?
That was certainly a part of it. But I could also see artists celebrating their art, celebrating their creativity as actors, directors, singers, and so forth. Hollywood has produced the most powerful art of this century. Although most of their work will be forgotten, movies like "Casablanca," "2001," and the "Godfather" trilogy will be winning new fans for hundreds of years.
In the best movies, we see God manifested through human creativity. We see art transforming both its makers and its audience.
Maybe it is ridiculous to imagine God in a tuxedo on Oscar night. But I eventually discovered that God is there, just as surely as God, wearing green surgical scrubs, is present in the ICU.

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