A Photograph of me without me in it

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

Friday, May 31, 2013

Fear Circling Hope

Last night, my partner Ann and I attended the one-acts at her school. I worked as an English teacher in schools for 26 years, and in that time I attended lots of sports events, celebrations, and plays, but I never attended the student-written one-acts. With generally 180 teenagers in my classes, I felt that I read enough of their writing, and I needed a break.

When Ann suggested that we see the student written "Fear Circling Hope, I was excited to go.

I don’t work with teenagers any more, and I miss them and their writing. Besides, I’m pretty sure that Laura Ferri, the theatre teacher at Ann’s school, is brilliant. Six springs ago, when I was teaching in a high school with many students who were poor and immigrants to this country, Laura and I had briefly discussed having our students work together. Though I was nervous about bringing my students together with her more privileged students, I believed that the exchange could be life-altering in some good way that I could not yet envision, and I believed that my students had the right to work with someone as talented as Laura, so Laura and I started dreaming.

When Laura called at the end of April 2007 to start work on some real planning, I had not yet told anyone outside of my family about my tumor, and I said to Laura, “This isn’t a good time for me to work on this. I’ve just learned that I have a brain tumor.” Laura scrambled to get off the phone, and I learned that I needed to practice telling people about my tumor as I would practice a part for a play. This would be a performance.

When Ann told me Wednesday that the ensemble would be performing “Fear Circling Hope”, an act that they had toured in San Francisco hospitals—a play inspired by the journals of 100 teenagers in intensive care—I wanted to go. I was not just willing, but eager.

I love teenagers, and I’m fascinated by people’s experiences with life-changing health conditions, so the play would be perfect for me.
There were four one acts that night, and we planned by-pass the first three and to arrive in time for “Fear Circling Hope.” 

Fortunately, however, we got there earlier than we intended. The second one-act was just ending, and we could hear lots of laughter. We settled in for the third one-act, “Philadelphia,” a short and clever play written by the professional writer David Ives and directed by faculty member, Ellen Graham. The play was about a young man lost in the metaphysical black hole of Philadelphia, a horrible place where you can never get what you want and can only eat Philly Steaks. Another fellow was in metaphysical LA, which was much sunnier, and a waitress was somewhere else.

What made the play good was the clever script and the Abbott and Costello delivery. I laughed, and it wasn’t the laughter of aren’t-these-teenagers-clever. It was that-was-funny laughter.

After “Philadelphia” and an intermission, “Fear Circling Hope” began. This play began with the sound of a heart beating—hands thudding against chests—and then the heart stopping. Students were alternately teenagers in hospital pajamas and doctors in white coats. Every now and then a character personified an emotion: grief, for example, wore a black mask and did not have a face.

This play was not funny, and I had not expected it to be, but I hadn’t expected to work to hold in my sobs. Though I was not a teenager when I was in the hospital for neurosurgery and recovery, I had experienced so many of the scenes I saw, and I had asked so many of their questions: Would I get better? How much better? Who would I be now?

When one character went to the hospital after a car accident and was surrounded by a bevy of people in white paying attention to his body but not to him, I remembered my own car accident and my own bevy of white-gloved hands.

Towards the middle of the play, a character who was paralyzed hallucinated that she was tap-dancing with her doctor and nurse. Since the people playing the characters were real, they tapped an impressive lightness on the stage.

As they tapped, I remembered my own hallucinations—not so cheerful and a bit bizarre: in the Intensive Care Unit, I was teaching a class and needed to give them an assignment before the nurse could change some tube. In my room, I thought a party of colleagues had come to see me, but it turned out just to be my mom and Ann. Another time, I thought I was in the crematorium. That sounds grim, but it wasn’t. It was frustrating with its ineffective supervisor and my flame-retardant pajamas.

The tapping lightened the tension for me, and I recovered my sense of distance from the play: I was again an audience member, not a patient.
With the characters, I returned to my life of wonder. I marveled at these teenagers’ poetry and all they must have learned. I was humbled by how important art is and how little I knew that before. As one spoken duet said:

Sometimes I wonder,
what the world would be like,
if it cracked itself open
and learned to fly.
I wonder sometimes,
what it's like to be free.

Today, I am able to breathe normally again, and at the play last night I even composed myself in time for the lights to come up, but I will not forget how intense my response to this play was. The students are right: grief does not have a face. It is nestled between my bones and only emerges when it’s invited by some unbidden memory. But the grief is always there.

My life is joyful. It’s true. And part of that is because grief is a part of me now. It is a part of who I am.

One character quoted Albert Camus: "In the midst of winter, I found in me an invincible summer."

In my winter, too, there is an invincible summer, and in my summer there is an indomitable winter.

Tuesday, May 28, 2013

Time to talk about it

The first fall that I taught at Tyee High School, an assistant principal, the saucy Joan Ferrigno, new introduced a strategy for having students learn vocabulary to the staff. As I remember, she put a new vocabulary word in the middle of a page, what it means in the upper left hand corner, what it doesn't mean in the upper right hand corner, three examples below the word and three non-examples below those.

Saucy Joan chose to define the word "menopause," which was clearly on her mind. I remember that she introduced her vocabulary word by saying, "I know that some of you complained last year when I talked about menopause, but I don't care. Today, I'm defining menopause." I don't remember all of the details, but I remember that an example of someone who experienced menopause was Oprah. A non-example was Donald Rumsfeld, the Secretary of Defense under W.

See what I mean: saucy. Some people on the staff were very quiet. I roared with laughter. Joan was flaunting convention, as she often did, and it seems that one convention is for women--maybe men, too--not to talk about what it's like to get older. I think it's time we start talking about it: time to come out of another closet.

The first time I remember hearing about menopause was when I was  in my early twenties. I was walking with older female colleagues outside of the lunchroom at the school where I taught in Dallas. I was shocked and appalled. As the women laughed about night sweats and volatility, I couldn't believe that I had never heard about my destiny before.

I knew about things that happened to men as they aged, and any child growing up these days who looks at the front page of the Sports section in The Seattle Times knows about "Erectile Dysfunction." The little boys and girls know that the greying men with their greying wives are super-elated about the treatment.

But do we get a daily dose of menopause? No.

Last week, my delightfully curious classmate Robin, who is in her early thirties, asked me about menopause: What happens? What's it like? How long does it go on? Really? Oh, my heavens.

This closet that I think it's time to open up has been closed for a long time. It's hot in there. Super hot. Take off every piece of cloth that's touching your body hot. You'll have a headache. I hope you have a towel in your closet because if you fall asleep, your body will become a fountain of sweat. You'll be tired. You will probably need to pee. Often. I don't know what you'll do about that in your closet. If you don't know either, you'll have a temper tantrum. You will probably kick a hole in the wall.

That's what my generally calm partner Ann did when she was going through menopause and couldn't find a tee-shirt that she wanted to wear. Yep, she kicked a hole in the wall. (She fixed it after she calmed down. I've told that story a thousand times. I suspect she's sick of it. I suspect I will never tire of this story because it's true AND it's so uncharacteristic of her.)

A few years ago, before I started what in women's secret code is "the change," I went to Menopause the Musical with Ann and our friends Ellen and Karen. The three of them had already experienced "the change," and they thought it was hilarious. So did the other three hundred gray-haired women in the theatre. Their were seven greying men (with their greying lady-partners, I presume), and the men hee-hawed, too. I was the only person who was not laughing. I was seeing my future, and it was not funny.

Now that I'm going through the change--for my fifth year--it's bizarre, but it's really not so bad. I think we should not be so afraid of being old ladies.

I exercise twice a week with women in their seventies and eighties and my neighbor Annabella who's 93. They ache, but they're hilarious. They're my peeps.

There could be worse things than being an old lady. (Look at the bottom of the front page of the sports section, for example.) Just like there are worse things than having brain tumors and disabilities. It's time we demystified it all. When we talk about it (or sing about it), we can laugh about it.

Wednesday, May 22, 2013

How my English Literature BA informs my life

Billy Shakespeare often used the character of a wise fool in his plays. This character was often a bit bawdy and low class and wise in ways that the audience was more likely to perceive than the characters in the play. Think of Trinculo (“Misery 
acquaints a man with strange bedfellows”) in The Tempest or Feste  (“Many a good hanging prevents a bad marriage” and “There is no darkness but ignorance”) in Twelfth Night.

There’s a guy called the fool in King Lear, the story of an old king who struggles with his place in the world when he loses both political and familial power. The fool runs away when he encounters Poor Tom, a man who seems to have lost everything, including his mind. It’s easy to imagine that Poor Tom is a wise fool, but he’s just poor; in meeting Poor Tom, Lear sees into a mirror and recognizes his own powerlessness. In this, King Lear confronts the realization that he is no tragic hero, and he becomes the wise fool—a man of low stature and, redeemingly, of wisdom.

The playwright makes it clear to the audience who is the wise fool, but in real life, it’s hard to tell who’s a wise man and who is simply a madman.

I met a guy in the bus stop the other day who, it seems to me, was in real life a wise fool, and I’m not sure what percentage was wise and what percentage a fool…or maybe he was 100% of both.

I turned my book in at the Douglas-Truth library and went to the bus stop to take a bus down a hill that is hard to navigate with my disabilities. It was drizzling out. (As Feste who must have been from Seattle says, “The rain it rainith every day.”)

I usually wait for a bus right at the curb, but I was chilled and moved under the shelter where a well-coiffed man in his sixties sat reading. As I pulled out my kindle to continue reading Cheryl Strayed’s Tiny Beautiful Things: Reflections on Love and Life from Dear Sugar, this well-coiffed man spoke to me. 

When I gave him my attention, he said, “You are present. Most people are not.” I imagine that most people are following the bus riders’ code of conduct, which is to ignore any stranger because it’s likely that they’re crazy and won’t stop talking.

This man had a lovely, gentle aura, though, and he was interesting, so I listened. He said that he was born in Boston, lived in France during his thirties, lived in India with his master for eight years, and now lives in Seattle.

I asked about his master (not like a ruler; more like a Buddhist teacher), and he said, “He’s with us now. Right here.” In this, I gathered that his master had died but had inspired him with a new understanding of the transitory nature of the world.

This wise fool shared with me his ideas of the world and reality. He stood up and moved closer to me. Though my eyes are crossed, I did my best to maintain eye contact. Ellie, who is in my yoga class, walked by head down: she would not be caught in this man’s philosophical meanderings.

At some point, he stopped talking and noticed my pin. “Why are wearing the image of a car?” he asked me.

“It’s a bus,” I said. “It’s in support of our county’s bus system and in protest of upcoming cuts in service that will most impact the most vulnerable people in our community,” I explained.

“It won’t do any good,” he replied, applying his wisdom to the situation.

I just nodded, but to myself I thought of one of my life’s mantras: “Do the right thing, even if it has no effect.”

That’s how I want to live my life, doing the right thing even when doing the right thing will have no effect. I adopted this mantra when I was working at a school for many students who were living in poverty, and I was at times overwhelmed by all there was to do to make their lives better.

Beside my desk in that school, I posted a Thomas Merton quotation that had followed my overly busy self from school to school:

"The rush and pressure of modern life are a form, perhaps the most common form, of its innate violence. To allow oneself to be carried away by a multitude of conflicting concerns, to surrender to too many demands, to commit oneself to too many projects, to want to help everyone in everything is to succumb to violence. More than that, it is cooperation in violence. The frenzy of the activist...destroys his own inner capacity for peace. It destroys the fruitfulness of his own work, because it kills the root of inner wisdom which makes work fruitful."

“So what do I do?” I thought. “I want to make this world a better place." So I decided, I will do the right thing. Sometimes, the right thing will make a difference. Sometimes, it will not. Often, I will not know whether or not diong the right thing  has made a difference. But I will know in my heart of hearts if I have at least tried to do the right thing.”

And so I do. And so I listened to the wise man who might be a fool at the bus stop. Because a person should be attended to, should be listened to, not just politely but with heart.

That listening can blur the black and white clarity of things. So that must be right, too.

As Feste sang:
And hey, the ho, the wind and the rain.
The rain it raineth every day.

And the bus came and this wise fool and I said good-bye as he continued downtown to the International Film Festival, and I went to my yoga class. 

Wednesday, May 15, 2013


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.