"For me a brain tumor and its treatments are not a pause in the adventure of life, but instead a part of the adventure of life." Mary has survived big hair, a brain tumor, coming out, distressed bowel syndrome, hallucinations, radiation, and a car wreck. Here Mary takes us from public transportation horrors to the joys of sharing life with you. Though you probably won't want to have a brain tumor; you will wish that you could see the world through Mary's eyes. Sister Jen
I live mostly
in my head: I’m a thinker. (See me tapping my temple with my index finger.) I
analyze and ponder. For this, I get along well in “the academy” with professors
and researchers and others who, like me, lead with their heads.
week, in my “Empowerment for Students with Disabilities” class, the professor is
requiring us to select one of twelve stances to practice and reflect on, and I’ve
selected “Listening with Heart.”
mostly try to be kind, this assignment challenges my usual way of being in the
world. My ears, I’ve noticed, are closer to my brain than to my heart, so listening
with my heart seems physiologically difficult: I try to imagine an ear at my
heart, but that just seems like something that Frida Kahlo might paint.
I decided to
give it a go, and on Sunday afternoon, my partner Ann, our friend Chris, and
I went to a discussion on The Adventures
of Huckleberry Finn at the Northwest African-American Museum. Sponsored by
Book-It Theatre, which is now performing The
Adventures of Huckleberry Finn: Uncensored, the museum and the Central
district location offered the possibility that we—all three of us white women—would
hear diverse perspectives from African Americans.
meeting room filled with maybe fifty people, however, I noticed that few of
those attending were people of color. I was disappointed, though I know that it’s
not really fair to expect African-Americans to show up so that I can
understand. Just as the meeting started, a smartly dressed older
African-American woman sat at the other end of our row, and I was glad to see
her there. I liked her red hat. I hoped she would speak.
moderator, Sharon Williams, was a young woman in her twenties or thirties who
opened with the declaration that this would be a safe space for a challenging
discussion. She seemed wise, and I appreciated her optimism, both in
proclaiming that the space would be safe and foreseeing that the discussion would be
challenging. She spoke with such heart that I wanted to believe her optimism, but
my brain kept getting the way: “How is she so sure?” I thought but then I
reminded myself: “Listen with heart. Listen with heart.”
opened the discussion with ten-minute reflections on Huck, truth-telling in American History (and the lack thereof),
censorship, and racism. It was an impressive panel: David Bradley, a white-bearded
African-American Professor of Fiction at The University of Oregon; Dr. Jocelyn
Chadwick, an African-American woman who has taught English for over 30 years, starting
at Irving High School in Texas and now teaching at the Harvard Graduate School
of Education (you’ve probably heard of Harvard); Shelley Fisher Fishkin, a
white Professor of English and Director of American Studies at Stanford (you’ve
probably heard of Stanford, too); and Nancy Rawles, an African-American
Seattle-ite who wrote the novel My Jim,
telling the story of the slave Jim from the perspective of Jim’s wife (She’s
also a writer in the schools, so she teaches history and writing to high school
and college students, too, but she doesn't have a fancy label, and they didn't fly her in. )
three panelists spoke compellingly about Huck
and its importance in the American story, and as I listened, I found that I
could listen with my brain and didn’t have to try that funny task of listening
with my heart. I know the academy, and
these were my peeps. Or at least I wanted them to be.
smart. Dang smart. (I’d like to take classes from each of them, but since none
of them are from Seattle, that’s not likely.) I started wondering why Book-It
had flown in such an impressive group, and as they talked I suspected that
their stance was Book-It’s stance.
Each of the first three panelists argued
that we should teach Huck because the
novel, written after the Emancipation Proclamation but situated in the time and
place of slavery, teaches us about our national history and about universal
truths: we humans are often blind to our own bigotry; our nation in its
American History textbooks and curricula hides are unpleasant inhumanity,
encouraging such blindness; if we censor Huck
we are complicit in promoting this blindness.
fourth speaker, Nancy Rawles, began, and her manner and credentials
distinguished her from the other three. She said, “I have decided to speak from
my emotions. I am never going to read Huck
Finn again.…I found the reading to be painful when I was a child. It was
presented as a boy’s book, an extension of Tom Sawyer….As an adult, I was taken
aback by the language….Ten years ago, a grandmother objected to this book in
her granddaughter’s class. I’ve started thinking as a parent of an
African-American child in the Northwest, where we have proportionally fewer
African-Americans and where some black students will be the only
African-American student in a class of white students….
listened to Nancy Rawles, I listened with my head and my heart. I thought, “And
most of those students—even those in predominately black classrooms--will have
white teachers. I was a white teacher myself, and I taught Huck Finn. I don’t think I can understand how
this book feels for a black person.” I recall hearing a Harvard University
professor remind me of the first rule of teaching: “Do no harm.” I wonder when
I have done harm, and I wonder if the academic arguments are stronger than this
harm. As I listen to my heart,
I think teaching this book is wrong.
listening to my heart, the older African-American woman at the end of my row
stands and speaks: “I am that grandmother. I came today because I suspected
that my perspective would not be well-represented, and with the exception of
Ms. Rawles, each of you on the panel has spoken in support of this book. This
book degrades the children. There’s a new book called The New Jim Crow that does a better job of talking about race than
interrupts her to say (to myself), “That’s an excellent book, but it’s not a
great American novel and won’t be accessible to many high school students.” My heart tells me to keep listening, so I tune
back in to the grandmother.
“When I was
in that white woman’s class [her granddaughter’s teacher was the white woman, I
gathered], she was salivating to get to the word “nigger”…. My granddaughter had to go to an all-Black college....I look around the
room now, and not many people look like me. That should tell you something. We’re
through with Huck.”
hears her anger.
intellectual conversation among panelists and white people in the audience rebuts
the grandmother’s argument:
“I had conversations
in the 1990s about Twain with Ralph Ellison who had a portrait of Twain over his
desk and said that Twain resonated with him, and he never would have been the
writer he was without Twain.”…
start talking about Huck, we start talking about schools….”
“Huck Finn is the reason that I did not
go to the Vietnam War….”
problem: parents think they’re gonna know who their children are going to be,
and the parents are wrong….”
“Where do we
stop? Lorraine Hansberry? Alice Walker? Martin Luther King, Jr.? Thomas
Jefferson?...Do we just teach happy literature? Literature is supposed to move
me to act, as Aristotle says literature should….”
“Most of us
in the academy think that a reasoned explanation will be convincing. [audience laughter]…”
As I listen
to them, I think that their arguments are compelling, but my heart returns to
the grandmother and her righteous indignation.
African-American man in his thirties speaks from the row behind me. He speaks
with his heart, and I listen with mine: “When I was in high school, I was the
only African-American in my class. An old white lady taught us, and she wouldn’t
say the “n” word, so when she read aloud and came to that word, there’d be this
long awkward pause. It was so painful.”
word again: painful.
My head can be convinced that Huck is necessary, but my heart cannot. “Do no harm,” I think
When I was
young Auntie (pronounced “On-tee”) gave me a book of Aesop’s fables, and one of
my favorites was the story of the town mouse and the country mouse. (There was
no suburban mouse.) As I look at the story now, I realize that the country
mouse had it better than the town mouse, but what I remember is that each found
traveling interesting and in the end preferred to live in the place they called
weekend, Ann and I visited our country mouse friends Colleen and Marie at their
home on Whidbey Island. We call it our favorite B & B & D (Bed and
Breakfast and Dinner), though now that they have a loveable dog Ruby, they call
it Ruby’s Inn. They have a beautiful, large yard, with vegetables and fruit
trees and lots of flowers. Sometimes we see deer. Lots of birds sing and flit
happily about their yard. (At least, these birds seem happy. I wonder if birds
home are lots of treasures from their walks: rocks and shells and sundries. (Ann
and Marie found an unusual sundry when they walked this time: a new leather gun
holster.) We stretch out on their living room couch and watch the ferries as
they travel to and from Port Townsend on the Olympic Peninsula. A fire in the
fireplace warms us. We laugh when Ruby dumps out her toy basket.
took one of those ferries to see the film Girl
Rising, a Paul Allen-funded documentary about eight girls in different
parts of the world who share their stories of a moment of change. The directors
paired each girl with a woman writer from their country, and in most cases the girl
starred in her own story. Not all of the stories are happy, but with the girls’
grit and imaginations, they’re all hopeful. (If you have a girl in your life,
you should take her—but know that one of the stories involves a rape that’s not
graphic, but still…)
film, we walked next door to the Local Food Café for soup and pasties and a
tasty truffle each. From our table, I looked out to the American National
Bank’s old building, refurbished and now displaying a Jimi Hendrix poster in a
second floor window and “Espresso” shining in the first floor window.
back to the ferry through more old buildings used for new businesses. This town
is just cute. When we returned to Ruby’s Inn, I took a nap while Ann and Marie
walked Ruby, and Colleen did something very important that I can’t now recall,
and then Marie, who is a physical therapist, called a previous client who
severed his spine in a fall last year and has an amazing spirit and was willing
to be a part of my book of interviews with people with life-changing health
conditions and those in our lives. So we went to visit him.
breakfast, Ann and I headed back to our town life and went with our friends Pea and Ally to a one-man show
called Riding in Cars with Black People.
The writer and performer, Chad Goller-Sojourner, is a large
African-American man who grew up with white parents in a wealthy Seattle
neighborhood, and writes about how different being black is when you’re not
identified as with a white family. In the opening scene, for example, he tells
of being stopped by the police and asked, “Where you headed?” Not a question
cops asked when they pulled over his white parents or his white neighbors.
mice back in town, we continued throughout the week to enjoy our town: I
visited The Center for Courage and Renewal downtown (because who doesn’t need
courage and renewal); I took the bus to yoga; Ann went to the movies with our
friend Chris; we went to the Five Point Café with middle-aged Farkle friends
(we were the only ones with any grey hair and without any tattoos at our
table); this afternoon we’ll attend a discussion of Huck Finn and the “n” word
at the NW African-American Museum.
we love visiting our country mice friends, we are town mice: Seattle for us is
home. Still, we love the opportunity visit lives different than ours. They
remind us that we see this world and live in this world differently than others
with whom we still have so much in common.
I usually “walk on the sunny side of life” (as Alison Krauss
sings) but last Monday in my soul the sky was “grey and white and cloudy.” (That’s
Simon and Garfunkel.)
It was not just cloudy in my soul, but as I walked home from
yoga in the Seattle drizzle, I looked ahead to see my cloudiness mirrored in
the eastern skies. More dramatically, when I came to an intersection and looked
left, then right, then left again (like I learned in second grade), I saw black
thunderheads on the horizons to the north and south, bringing to mind The Dixie
Chicks: “Thunderheads across the mountains / As
another dream goes by. / They glow like clouds from heaven, / But the devil has
to have his way. / Thunderheads will bring you to your knees, /And make you
pray for a rainy day.”
These skies matched my spirit. In yoga, a substitute
teacher had had us focus on triangle pose, a pose where a yogi’s legs are wider
than hip-width and straight at the knees as the yogi bends from the waist,
dropping one hand to the ground and raising the other to the sky.
Triangle pose is an open pose, and was my most natural
and favorite pose in my first yoga days twenty years ago. In those days, I
loved the openness of my heart and the ease in my twist.
Since neurosurgery, I’ve learned to alter poses so that I
can still do yoga and stay in its spirit, and I’m glad for this gift, but this day as I
did a variation of triangle pose, I missed the old days, the old openness, and
the old ease.
I do this altered triangle pose each morning, so trying
the pose in this new way was not new to me, but remembering the loss as others in
the class moved easily into the position was hard, and I swallowed a sob that
rose into my throat. It was this loss that I felt as I walked home in the grey
day and noticed the thunderheads to my left and right. I felt sad, but I didn’t
have the luxury to sit with that sadness: those thunderheads might break lose
any time now, and I needed to move on.
Since my brain tumors, I’m not much for scurrying, but I scurried as
best I could to get home before the hail rained down. As I rounded the corner
to my house, the ABBA song “Fernando” slipped into my consciousness.
The previous afternoon, friends Allyson and Pam had joined
my partner Ann and me for the Seattle Men’s chorus’s “Dancing Queen” performance.
There are a jillion of these singing men, one of whom is Ann's cute cousin Michael. They sang renditions of Abba songs,
accompanying the lyrics with hand motions and silly skits. They wore ruffled
shirts in bright solid colors, a visual delight of pinks, oranges, purples,
and lime greens.
In a skit that introduced Abba’s most successful song, “Fernando”,
the chorus acted out a scene from a war between Sweden and Spain, though I
think the song is actually situated after the Mexican Revolution. The skit was
campy and fun, like the song. A disco ball over the audience flashed stars
across our sky to accompany the chorus’s first line: "There was something in the air that night, the stars were bright, Fernando."
The concert was just fun and funny: just right. That
morning, when I had gone into the library to return my book, a woman at the
counter was singing (fairly loudly and pretty well):"There was something in the air that night, the stars were bright, Fernando."
I laughed as she sang and asked if she had been to the Seattle Men’s
Chorus. “Wasn’t that fun?” she said.
I said it was, and laughed then, and I laughed again with the memory of
the concert, all that bright ruffle, and her singing in the library’s hush.
As I walked up the sidewalk into my home, I again walked on the sunny
side of life. I thought I had beaten the hail home, but as it turned out, those
thunderheads just drifted away—in my spirit and in the Seattle skies.
It’s strange how the darkness can come and go like that.
Last week in my yoga class my teacher Victoria had us imagine
a hoola hoop in front of each of us. We were to pick it up and twirl it around
our waists, then twirl another around our necks and another around each arm. As
we contorted and giggled, she also suggested that we twirl an imaginary hoola
hoop around one foot, but I didn’t do that because the floor was not imaginary
and neither was my body, and I didn’t want to fall.
As the twelve of us in the room “twirled” spastically, she
laughed and said, “Now try something crazy.” I’m not sure what she had in mind.
I was thinking, “I thought this was crazy.”
So many things seem crazy to me now as I navigate this city
with my disabilities. Just that morning,
for example, I had walked to the bus in gusts of wind so powerful that at times
I had to stop and hold on to a tree just so that I wouldn’t fall.
I imagined what Snoopy would have typed about this day: “It
was a dark and stormy day.”
Over the past three months, I attended a series of
lectures on Yoga Philosophy and History by my first yoga teacher, Denise
Benitez at Yoga Arts. The yoga philosophers we studied were perhaps crazy in a
nerdy way. At least, I guess, my studying them was nerdy.
Which is okay with me. I embrace my nerdiness, and I seek
companionship among others who are so inclined. (Cheryl, a friend in my
ependymoma support group, recently crowned me “the epe yoga gal.” I love it!)
Denise opened the class with a welcome: “Hello, yoga nerds!”We
all smiled and giggled a little in self-recognition.We sat in the middle of the floor, shoes off,
in this yoga studio on a Friday night while the cooler set had cocktails at the
bar next door. These nerds were my
As Denise talked about the Tantric Yoga tradition, I took notes on my laptop (of course).
As I took in the room’s textures and fullness, I remembered
the first yoga studio where I learned from Denise twenty years ago.
In those early days, Ann and I parked in a lopsided parking lot whose asphalt was
splitting. A rusting tall chain link fence surrounded the small lot.
We took the rickety stairs to the third floor where we
waited in a cold hallway on a gymnastics mat rolled on its side and took off
our shoes, leaving them in the hallway while we were in class.
We each took a spot in a long alleyway of a classroom and
tried poses named for contorted animals: downward facing dog and dolphin pose,
My body, athletic but unaccustomed to this kind of stretching
and breathing, slumped into poses, though I found an early home in triangle
pose (named for the shape, I suppose, not the instrument).
At the end of these long ago classes, we covered ourselves
with blankets and practiced being dead as we relaxed into shivasana, or corpse pose. As we died to the world, the drumming
class next door always crescendoed.
After class, Ann and I were always glad to see that our car
was still in its rusted fence.
Denise is an outstanding teacher and has moved yoga-style
upscale through the years.
When I was still taking classes with her, she moved
to a airier, quieter studio in an area where rusted fences were not to be
found. Giant metallic stars, lit from the inside, hung from the ceiling above the small cramped area where we took off our shoes.
Around the time of my tumors, she moved again. This was my first visit
to her new studio.
As I sat sockfooted on the floor, awaiting the lecture in
her studio, I looked around and marveled at the paper lights. Outside the studio were shoe cubbies and a
waiting area with rugs and comfy benches and—lo and behold!—a receptionist.
I marveled at the
change in Denise’s yoga home, though her light giggle and poetic spirit seemed
at their essence the same.
As I remember, Denise was a fashion designer in New York City before she came to Seattle to teach yoga, so each new studio's richer décor fits her spirit.
I always marvel at the great luck that I had found such a
crazy passion so early in my life, a passion that prepared me for the craziness
and the joys of brain tumors and their effects.