A Photograph of me without me in it

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

Saturday, January 29, 2011

Three in a Million

I am one in 350,000. I really wanted to be one in a million, but it's 350,000. That's according to the doctor of someone in my ependymoma (a rare brain tumor) support group. According to that doctor, at age 50, one in 350,000 people have a brain ependymoma. An ependymoma, according to almost anyone, is 2.2 percent of all brain tumors.

Somehow, being three in a million just doesn't sound as special as I feel I am. I once heard a "This American Life" where a mathematician's girlfriend asked him if she was the only one in the world for him, and he replied that she's probably one in four hundred thousand. He thought that sounded good. She didn't. He needed a bit of the poet in his mathematical mind.

According to the 2010 census, 563,374 people reside in Seattle, where I live. Statistically, that means that two Seattle adults might have ependymomas, though with our quality hospitals, I suspect we may have a higher percentage here. I guess two in the whole city sounds a little more special than three in a million. I wonder if I've ever met that one other person. That would be unlikely.

A few years ago, I worked for an educational technology company, and an African-American friend of mine was sent to Maine for a sales jaunt. She said that as she pulled into a gas station to fill up, another customer, an African-American man, got out of his car at the same time. Two African-Americans at the same gas station in Maine. Probably as unlikely as two people in Seattle with ependymomas at the same coffee shop, though it was probably easier for them to recognize the unlikeliness than it would be for us, as I've never made an announcement in a public place: "Excuse me. Does anyone else here have an ependymoma?"

Accordng to the website "True Knowledge" (intriguing title), the population of Raleigh, NC, the city where David Sedaris and I grew up, is 402,589. That means that in Raleigh maybe I would be the only one in the city with an ependymoma. If I moved there, I wonder if it's more likely that there are two people with ependymomas or just one, since I would have increased Raleigh's population by the insigificant number of one, but I already know I have an ependymoma, so would it be likely that there would be two of us?

Somehow, I suspect this mathematical conundrum is like the "Let's Make a Deal" math problem. Do I stick with door number one or change to door number two? Stick with door number one. I'll stick with my ependymoma, thanks. Actually, I've already given it up. Even more complicated.

Special enough. Mary

Monday, January 24, 2011

My Dinner with Annabella

Last night my partner Ann and I had dinner with one of our favorite people, our neighbor Annabella.

When we, two professional white lesbians, moved into this neighborhood, which had been part of the rough and tumble central district (or "CD") since the 1960s, we were a little nervous. Once, soon after moving into the neighborhood, a motorist slowed down on Martin Luther King Way to roll down his window and holler out, "We don't want you here!" We weren't sure why he didn't want us here. There were so many possibilities: white, female and gay heading the list. Once in those early years a cab driver wanted to refuse to take us home because "that neighborhood is too dangerous." Another time, we came home to a sharpshooter in the yard: a felon who had stabbed a policeman was holed up in the crack house a couple of houses down. Adolescents in bouncing cars raced each other around the circle meant to slow them down. The neighborhood's not so interesting any more, but it was when we first moved here. That was 14 years ago.

Annabella made us feel welcome immediately. One of the neighborhood elders, she called to reply to an open house invitation: "Hi. I'm Annabella. I"m your neighbor. I drink beer." She still doesn't say good-bye when she hangs up. She just hangs up, and I know the phone call is over. We have been fast friends ever since that first phone call. Both she and I have slowed down a little: her ninety years have slowed her down (though she'll point out that she still looks good, and she does), and brain tumors and such have slowed me down. We still drink beer together.

Last night, when we'd each gotten our beer, Annabella, who has lost many of her friends to Alzheimer's and death recently, made a toast: "Here's to those of us who are left."

Annabella shared stories from her past, stories from a time and a culture I've never known. Raised in New Orleans by her mother, who was "One hundred percent Cherokee Indian" and was quick with a switch, Annabella came to Seattle at the beginning of the second world war. Her husband-to-be Brad sent her $13 to pay for her train trip to Seattle. Her mother used the money for their rent. He sent another $13, and again her mother used the money for the rent. The next time, he sent a train ticket, and Annabella headed to Seattle.

Soon after Annabella arrived in Seattle, Pearl Harbor was bombed, and Annabella became a riveter, like Rosie. She'll still show you her muscle. When mechanics needed someone strong, they'd call for "the Indian." Once, a machinist wasn't paying attention and came so close to her head with his saw that he sawed a part down the middle of her long hair. She was okay, but she was mad. She's a Catholic woman, but she can curse a blue streak, which she says she did then. She repeated herself last night for effect, and other diners looked over to make sure everything was okay; then smiled when they saw it was her. When the war was over, Annabella says that everyone else cheered, but she cried. She loved working.

She and Brad cleaned hotels at night, leaving their two young girls in the car, and they hosted poker games until they paid for their home here in the CD. Her cooking and her looks earned them a little extra at the poker table.

Now, at ninety, she still volunteers at the elementary school, which she has been doing for forty years. Every year she sells a dinner at the church auction to raise money for the school and serves about twenty people drinks and okra, jumbalaya and pie. Upsairs, the guests admire her hundreds of dolls and other antinques and sing, "God Bless America." Then everyone heads downstairs for dinner and their choice of pie: sweet potato or pecan among the four or five Southern offerings. Everyone gets a "lagniappe"as they leave, usually something like rubber gloves or a role of paper towels.

Annabella speaks her mind--loudly, since she doesn't hear too well--about race and politics, religion and foolishness. When she talks politics, she talks about Democrats and "those other ones." She and I don't see the world in the same way sometimes, but we've agreed not to talk about issues where we'll simply make one another mad. Sometimes she wades into rough waters, and I'll stop her to say, "Now you know we don't agree about that. You're not going to change my mind, and I'm not going to change yours. Why are you talking about it? Do you want to argue?" She just laughs and shrugs and gives me a high five.

When she's got a complaint, she'll share it and then she'll quote her mom: "If it's not one thing, it's two." That woman's got wisdom.

Annabella's neighbor, Mary

Sunday, January 23, 2011

This Nation of Bifurcation

"The radio is at the root of the evil, their rule is: No silence, ever. When anything happens, the commentator has to speak without a moment's pause for gathering wisdom. Falsehood and inanity are preferable to silence. You can's imagine the effect of this. The talkers are rising above the thinkers." Harrison William Shepherd in Barbara Kingsolver's The Lacuna.

"A conclusion is simply the point at which you got tired of thinking." (from Ann's colleague Glen quoting an unknown source)
I often think now about Senator Gifford, the Arizona senator who was recently shot in the head by a guy with a gun. She had a bullet through her brain, and I had a tumor, and for sure we had very different experiences. Still, every time I hear a story about her progress, I feel a knot in my stomach. With reports of her progress, I remember opening my eyes. Seeing and hearing the people who love me. Sitting up. Learning to walk. Learning to use my eyes again. Those headaches.

I wish her and all who love her well.

Perhaps as a way to de-personslize the issue somewhat, I also think about the shooting in the context of our national dialogue, or lack of it. I seem to think about this aspect of the shooting differently than others, however:

"Be sure to understand both sides of the issue."  "There are two sides to every story". These common statements drive me to distraction. There are seldom two sides to an issue or two sides to a story. There are usually at least two sides, but there are usually more and generally there is somehing unthought of in another dimension. I suspect that if we could graph reality, reality would requre multiple planes that two-dimentional graph paper does not provide.

Our language here in the United States, maybe in all English-speaking countries, simplifies issues by framing any issue around two sides: Democrats and Repuiblicans, liberals and conservatives, good and evil claim our politics and our ways of thinking. In debate, in the news media, and in schools we learn about "pros and cons."

Students, whose wisdom we often miss, may want to know, "What if I am in the middle, or even off of the imaginary line between pro and con?" Teachers often say, I have said it myself, "You must choose a side. You must find a place in line." We hear the cliche, "You are either for me or you are against me." And so we decide one or the other, for or against, true or false. Yet, really, we are often neither absolutely for or against, and many times a statement is neither completely true or entirely false.

This paradigm of slicing reality into two parts interests me because this limits our thought and our politics. It makes us think there are only two choices, only two ways of thinking or being.

As a senior in high school taking A.P. American History, I struggled, I realized later, because I was looking for the good guys and the bad guys, and these delineations were often unclear to me. I did not know how to understand the world differently than black and white, good and evil.

There are times when we must bifurcate, you might argue, and in our system this is true. Legislators must vote yea or nea on a bill, for example, though I would argue that this bifurcation may be cultural and not the only way to legislate: in Stones into Schools, Greg Mortensen describes a Pakistani jurga, similar to the South African elder meetings that Nelson Mandela describes in his autobiography. Here community leaders (all men: I"m not saying that's a good thing) come together around issues facing the community, and they come to consensus around a decision. They don't necessarily decide yes or no. They make a decision that they feel will serve their community.

You might also argue that in court a person must be found guilty or innocent. This is not true. A person is found guilty or not guilty, which could mean a lot of things, one of which is innocent and another of which is that the evidence isn't clear and convincing. It is, however, true that the person either goes to jail or does not. But then, "does not" has so many possibilities. Again, the lignusitic tendency towrds twos belies us.

What's my point? Now, a couple of weeks after those horrible Arizona shootings, there's a lot of national dialogue about civility. I think there should be dialogue about civility, but I don't really think that civility is at the heart of our national tension. I think bifurcation of thought is. I think we need to think beyond two sides of an issue, beyond gun-control or freedom, beyond good or evil, beyond us or them.

Our national imagination needs to grow. We need to find the third position, and the fourth, and so on. We need to see the greys between the black and white. Perhaps we need to borrow from the Eskimo language, which I hear has one-hundred words for snow. we need subltelties, complexity, and gradations.

I'm not sure that simply being nicer to each other, especially people we disagree with, is at the heart of our national division: our red states and blue states. I think we need to be able to hear one another, and if we define ourselves and one another along such stark lines, in such dualities, then how will our imaginations grow? How will we listen and shift if our intellect is so busy labelling?

What will this look like in my life? I"m not sure, but I think I'll start by trying to understand the news or colleagues in more than a two-pronged world. I think I"ll start with threes. You?


Keeping it in perspective, a few quotations on truth from my sister jenn's reading:

"She had a 'relationship' with the truth, she explained coolly, and like all relationships it required compromises." The Tender Bar: A Memoir, J. R. Moehringer. p. 23.

" I’ve nothing against people who love truth. Apart from the fact that they make dull companions. Just so long as they don’t start on about storytelling and honesty, the way some of them do. Naturally that annoys me. But provided they leave me alone, I won’t hurt them." The Thirteenth Tale, Diane Setterfield (large print edition), p. 12.

Tuesday, January 18, 2011

Trepidation of the Spheres

In this morning's local newspaper, a story about Southern Sudan's succession vote ran alongside a story about tomorrow's likely Seattle snowstorm. Clearly, to understand the world in which I live, the story about Sudan was more important. I, however, read the snowstorm story.

This human tendency to focus on what's closest to us instead of focusing on the universe's grand events was the observation of poet John Donne in his "Valediction Forbidding Mourning." He wrote, "Moving of the earth brings harms and fears/ Men reckon what it did and meant./ But trepidation of the spheres / Though greater far, is innocent."

My brain tumors have of course been significant in my life, as they would be in anyone's. These tumors moved the earth of my life: I'm living this one life that I have differently than I would if I were tumor-free. I have a lot of doctors appointments, little energy, and fewer choices about how to live my life than I had before. These tumors are significant. No aw shucks about it.

But still, there are more significant issues than my brain tumors, and I want my life to be about those significant issues as well as being about these brain tumors. I want my life to be about the spheres' movements.

Years ago, when my student Chancey started to college, she told me with such excitement, "There are so many things a person could work on. I guess I just have to decide which one is mine." At the time, I was impressed by her attitude: where I felt overwhelmed by all that seemed wrong in the world, she felt excited by the possibility that she could make a difference somewhere. I remain inspired by that spirit.

The path I have chosen is through the various landscapes of American high school education. I get to work with and to learn from students and teachers from a wide range of backgrounds. I get to try to be not just a voice but a coach for them as they seek their own paths.

To me, what's more important: learning to live with my disabilities or increasing students' hopes that they have power in their own lives? That was a trick question, as I need each in order to achieve the other. As I gain the hope of dealing with my own limitations, I seek to help students and teachers articulate their dreams. I get to help them find a way to reach those dreams. The power of such hope inspires me to live a life fully, with my disabilities.

Survival just isn't the only point. Trepidation of the spheres: that's the point.


Monday, January 17, 2011

Slow Learner

I must be a slow learner, but I did NOT learn everything I needed to know in kindergarten. I only remember learning a few things. I learned that other kids struggled in ways that I didn't when Tommy had a temper tantrum on the playground every day: since the playground was the most fun part of the day, I knew he wasn't faking his pain and felt bad that he always missed the most fun time.

When I saw my teacher in her bathing suit at our swim club, I learned that old people's legs are different than young people's legs.

I also learned some good songs at our church's program for kindergartners. I remember learning the hymn that celebrates the divine in the natural world, "This is my Father's World." I was surprised when, about forty years later, my grandmother chose that hymn for her memorial service:

This is my Father's world:
He shines in all that's fair;
In the rustling grass I hear him pass;
He speaks to me everywhere.

This may have been my best lesson from kindergarten.

In church we also sang Bob Dylan's "Blowin' in the Wind" (and my dad says it's not a hippy church):

Yes, how many times must a man look up
Before he can see the sky ?
Yes, how many ears must one man have
Before he can hear people cry ?
Yes, how many deaths will it take till he knows
That too many people have died ?
The answer my friend is blowin' in the wind
The answer is blowin' in the wind.

Even in kindergarten I understood that the answer, blowin' in the wind, would be hard to catch, that it will take too many deaths til we know that too many people have died.

So yes, I learned some important things in kindergarten: I learned from Tommy that other kids struggled in ways that I didn't; I learned that old people had funny legs; I learned that the world's beauty whispers to me that God is with me; and I learned that war seems to never have an end.

I also learned some things in kindergarten that I had to unlearn, however. Though I don't remember this experience personally, research shows that some young people before kindergarten may begin to identify as queer, but in kindergarten many of these young ones learn that queer is not okay, and these students go underground until maybe fifth or sixth grade. Perhaps I went deep underground, since I didn't come out until I was thirty years old.

In kindergarten, I learned to be quiet if to speak up might mean I'd get left out on the playground. In sixth grade, I learned that silence is collusion. When my friends on the school bus bullied Bernie, the girl who wore cowboy boots, I didn't join in their taunts, but I also didn't stop them. My principal pointed out that in this I was like the Germans who were silent as Jewish people disappeared from their neighborhoods. My teacher said the principal was too harsh, but I knew he was right. My kindergarten lesson of being silent in the face of injustice in order to protect myself is a lesson I am still trying to unlearn.

I also had to unlearn the habit of excessive persistence. Like Kenny Rogers sang, "You have to know when to hold em, know when to fold em, know when to walk away, know when to run." In high school I finally learned that I had to make decisions about how long to persist when, realizing I was not having anything close to fun, I quit the high school basketball team. While quitting the basketball team may seem trivial to you, for me it was not. Through junior and senior high school, I often felt lonely, and my identity as a good student who was also an athlete was central to my self-definition.

I finally realized that I needed to redefine myself and that this redefinition would begin with quitting the basketball team. Later in life, in another painful time of letting go, I had to quit my marriage in order to be myself, and now with these tumors, I have had to give up so much in order to find the kernel of who I am.

I suppose if I had learned everything I needed to know in kindergarten, I might have been a guru or a saint, but in this life I am neither, so I am glad to keep learning, and in that learning is the constant spirit of grace, learning again and again that God is with me everywhere.


Thursday, January 6, 2011


Today my heart is heavy. Sometimes it's like that I guess.


Monday, January 3, 2011

Year of the Giraffe

The Chinese say this is the year of the metal rabbit (whatever that is). On my blog, however, this is the year of the giraffe. If you are reading this blog in China, there's a conundrum you'll have to figure on your own.

Why the year of the giraffe? The giraffe is my partner Ann's favorite animal, and this is Ann's year. She loves the giraffe for its simultaneous awkwardness and grace, for its calm loping across the Serengeti, for its fierce gentleness and for its amusing curiosity, bending that long neck to see what's up. Besides, Ann's colleague Randy just told me that the giraffe has the biggest heart.

Ann and I went to East Africa, on a safari in Tanzania and then a four week tour of Ethiopia, two years before my first brain tumor was diagnosed. I feel lucky, as I feel about so many things, that we took this trip when we could.

On the Serengeti, we watched lionesses (the females do all the work) hunt zebras and we watched a river of thousands of wildebeasts change its current in midstream due to a waiting--and smiling--alligator. We witnessed giraffes lope in family groups across the prairie lands to chew on a nearby acacia tree. We watched two lionesses make their determined way across a large burn, guiding their eleven cubs as they plodded through the burn. We watched warthogs in family groups of three as they ran hidden through the tall grasses, only their tails visible above the stalks. Hippos yawned; violet splendors winged their way from tree to tree; zebras turned their elaborately tattooed butts our way.

In Ethiopia, we celebrated a coffee ceremony with our young guide and his mother; we calmed to the chants of Lalibella's monks echoing off the mountainsides; we rode our way southward on a public bus, complimented as "Habis" (something like that, meaning clever and brave) by the old woman in the school bus seated near us.

There are so many things I'm thankful to have done when I could: getting to know friends in a rural Salvadoran town, rafting down the Colorado River in the Grand Canyon, hiking Alaska's trailless tundra, playing on the beach with nieces and nephews, and teaching diverse classrooms of teenagers seeking a dream they didn't often even know they were seeking.

Throughout my new life with tumors, I have felt gratitude for my life. Even so, last year was a rough year, with a new tumor, new allergies to chocolate, cheddar and garlic, increasing difficulties with balance and vision, the piggy flu and pneumonia, and losses in my community.

This year, the year of the giraffe, will be a year of healing. It will be a year of gracefulness in the awkwardness, a year of loping across difficult terrain with friends and family, a year of tenderness and curiosity. It will be a year with a big heart.