April 2018

Wednesday, October 15, 2014


This past weekend was intense. Friday my partner Ann and I attended the National Multiple Sclerosis (MS) Society's luncheon, where we heard one women speak about her own experience with MS and then her voice cracked when she spoke of her younger sister's diagnosis. Then Craig Robinson, Michelle Obama's brother, spoke about growing up with his dad, who had MS, and about the way that his father's MS--and his grace with the disease--directed his son's life in a positive direction. 

Then that night we saw the film Bulletproof by the team Zeno, a group of people with a range of abilities and disabilities that meets for two weeks each summer to plan and shoot a short film. Two people with disabilities starred in the show, and afterwards the actors answered questions from the crowd.

Saturday, we attended the film States of Grace at the Seattle Gay and Lesbian Film Festival. The film revealed the story of Dr. Grace Damaan, whose early career included opening San Francisco's first AIDS hospital and who adopted with a previous partner an infant, Isabel Allende's granddaughter, born addicted to drugs and HIV positive. Though the child has cerebral palsy and was not expected to live more than six months, she's now a college student. 

Then Damaan was in a head on collision on the Golden Gate Bridge, broke over 200 bones in her body, spent some time in a coma, and then awoke to rehabilitation and learning to live a new life in a new body. She shakes and uses a wheelchair, but has returned to work one day a week in the hospital she helped found, now managing a pain clinic, where she says she understands her patients' pain. 

Dr. Grace was at the film, and when asked how her Buddhism affected her as she healed, she made three points: 1) everything is ephemeral, even joy and pain 2) (I've forgotten two because three made such an impression) and 3) The tragedy is not dying. The real tragedy is not living. Afterwards, I got to shake her hand (she has a firm handshake). I told her that my radiologist had thought it was ridiculous for me to go back to school and to try to work again. "I wish he could meet you," I said. She asked my name, and we shook hands saying, "We can do it."

After the film, Ann said, "I'm wrung out." I was, too. It was interesting to notice what brought me to tears in the events. (I'm not one prone to tears: a therapist told me I needed to cry more often.) "When my little sister was diagnosed…" I heard at the National MS Society luncheon, and I choked back the tears. (My little sister hasn't been diagnosed: her brain surgery was for an accident a couple of years before my brain surgery--let's take a moment to appreciate my parents.) I teared when all those actors with varying abilities took the stage together, and a young man with Downs Syndrome (I think) who had starred in the film wrapped his arms around the waist of a man without apparent disabilities  who appeared to be the leader. Again, I choked back tears when Dr. Grace Damaan said on film, "I don't want to live like this anymore. What's the point?"

There's a point. She knows that now, and she might have known it then: life is a gift, even with its pains and struggles, and we are here mostly to love another and this amazing world. 

I needed brain tumors to understand how small I am and how big life is. I needed brain tumors to know that life isn't about how much I accomplish or how much I'm appreciated (though I like being appreciated). Maybe I needed brain tumors to see the gift of this life. 

In this sense, though I miss hiking and traveling, these brain tumors have been a gift. Some people don't like to hear me say that, but it's true. And I'm one for truth--even when it's odd. 

Especially when it's odd.


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