A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Wednesday, May 15, 2013

Confusion


When I was a high school senior at Broughton High School in Raleigh, North Carolina, my social studies teacher gave us a test so that we could see where we fell on a political spectrum. When my test showed that I was clearly a liberal, I was confused and so were my friends. I covered all of my girlie body parts, even when I wore a bathing suit; I didn't smoke pot; I went to my Southern Baptist church because I wanted to most Sundays. I even went to youth group at church during the week and belonged to a Bible Study. 

A friend who couldn't believe it checked my answers and, stunned, said, "She's right. She's a liberal."

It was as if we had just discovered that I was a toad.

At the time, my world view was a sort of cowboys and Indians, black and white view. When I studied history, I always tried to figure out the good guys in white and the bad guys in black (I guess the girls wore pink and didn't fit into this world view, but that didn't occur to me at the time.) I figured that if I only knew the good guys and bad guys, I could make sense of any conflict.

I don’t see the world in this way anymore. I don’t even see cowboys and Indians in this way. I’m not confused about being a liberal, either. I claim it. Yep, that’s me. A liberal. (I’m a feminist, too.)

I don't know how I turned out to be a liberal. I guess I just turned out that way. Maybe it's sort of like being gay.

Now I live in Seattle, and I'm surrounded by liberals. Still, I love and respect lots of people who see the world (and God) differently than I do. 

Some people I love are in the Tea Party. Some people I love believe that the Bible is a literal, historical document. Some people I love donate to congressmen who vote against gun legislation. Some vote for Republicans.

Some don't even like poetry. Seriously. 

That just shows me that “love” and “agree” are not necessarily synonyms. 

My yoga teacher Victoria talked today about the Sanscrit word "Santosha," which as I understand it means "contentment." She read a quotation that sounded like it was from the poet Rumi, something like, "If you increase your contentedness, you will increase your happiness." So contentment and happiness are not synonyms, either.

I have so often confused one thing for another. For a long time, I thought that disabilities were "tragic." Now I know that they're not. They're just another part of being human. 

Sometimes people see me as heroic, and even though I like hearing about my wonderfulness, I’m not heroic, either. I just see that I have one life, and I want it to be meaningful. What makes a meaningful life? Maybe connecting with other souls, thinking about interesting things, being and breathing.

You may say that I see disabilities this way because my disabilities still allow me to communicate verbally and in writing, and even though I'm slow, I can still get around town. That's true.

But my friend Lori is teaching me that though disabilities—even much more serious ones—can be frustrating--very frustrating--they're still not tragic.

Lori has cerebral palsy, and her condition has advanced so that I often have trouble understanding her, even a look left to indicate “yes” or right to indicate “no.”

I call Lori my friend, but really she’s done most of the work to invite a friendship over the last decade. When Lori first started coming to church more than a decade ago, she came with her caregiver Craig. I would talk to Craig (who also had disabilities, though they weren’t as severe), and he would tell me that I should talk to Lori, who was the one who wanted to come to this church. I wondered how he knew that she wanted to come to this church.

Lori’s style indicated that she was a character. She had a lesbian bumper sticker that indicated that she identified as a lesbian, and my partner Ann and I wondered how she knew that.

Lori has light brown hair, but for a while she came to church each Sunday with bright red or blue or green hair. I wondered how she communicated that she wanted her hair dyed.

I wondered all of these things, but it didn’t occur to me to try to get to know her.

Ann was on Lori's care team those first few years. That meant that we met the Access van at the curb outside the church, wheeled her to the pew that was short enough to allow for a wheelchair, and sat beside her through the service, making sure that she stayed hydrated. After the service, we waited with her until Access arrived, and then we went home and didn’t think much more about her.

Then one Sunday, another woman sitting with her, Sonya, verbalized a prayer of concern: Lori who was having a hard time because she was struggling with a housemate. Ann and I were stunned: “How does Sonya know that?” we asked each other. Then we shrugged and forgot about it.

Week after week, however, Sonya would voice Lori’s prayers, and then one Sunday Sonya and Lori gave a sermon together in which Sonya told Lori’s life story, a story she had learned from Lori’s high school journals, her family and caregivers, and a series of very slow interviews.

Ann and I began to get to know Lori, slowly. After the children’s sermon, curious kids would often stop by Lori’s chair, and we could tell she liked that. When the minister made a blooper, Lori howled with laughter, (in this I could see that we have a similar sense of humor), and when people told prayers of grief with which she could identify, she would howl in agony.

When I returned to church after neurosurgery, I paid more attention to Lori. I told her the story of a friend who asked me if riding Access was fun. We both laughed heartily at that. Since then, Lori swivels her head in church to look directly at me if I haven’t talked with her, and I’ve taken on a little bit of the responsibility for our friendship.

Recently, my friend Pea and I visited Lori. We shared our art with her. After Pam sang and I read some of my writing, Lori directed us to her room, and she showed us her paintings.

Lori’s room is pink and red. She has a giant Ichiro poster over her bed, and her room is filled with her art and photos of people who love her.
Lori has a great sense of humor, a big spirit, an artistic sensibility, and a way of making connections that belies her disabilities. Her life is clearly meaningful, as is mine.

Our disabilities make us neither tragic nor heroic. Just human.



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