"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
Happy Birthday, Sister Jen!
Tuesday, December 17, 2013
my friend Pea and I visited our friend Lori. Lori was diagnosed with cerebral
palsy as an infant, and now that she’s in her late forties, the degenerative
disease makes it impossible for her to have much muscle control, so she uses a
wheelchair. She also cannot speak, so for conversations, Pea and I ask
her binary questions ("Is it an elephant?" gesturing with the right
hand, "or a petunia?" gesturing with the left hand. She moves her
eyeballs right if it's an elephant, left if it's a petunia, and up if it's
neither. I'm not sure what it means when she moves them back and forth: either
she's tired or she's giving us a hard time.)
conversations are slow. We formed a little triangle in Lori's room yesterday,
and Lori decided among many conversation topics that she'd like to tell us
about herself as an artist. Two of her paintings were pinned to the wall, and
through a long series of answering binary questions, she told us that the
darker of the two is about a time when she was in elementary school and a boy
made fun of her for her disabilities. She was angry. She is still angry. The
other painting, with more yellows, greens and blues, is about the hope she
feels when she's in nature.
this slow conversation, Pea and Lori and I built our friendship a bit more
deeply. (That’s how the Ethiopians in Lalibella built their temples: by digging
down…slowly, as the work was done 900 years ago by angels and slaves. )
slow conversation fits my way of living in the world now. Since my brain tumors
and resultant disabilities, I move slowly, and I have been thinking about
moving slowly lately, about the ways that it has changed not only the ways that
I move in the world but also the ways that I see and live.
it's frustrating to move so slowly. When the bus that I had hoped to catch
whooshes by and I'm still at the curb, I wish I could run, but instead I will
wait in the cold and the rain for the next bus. When I'm crossing the street
and the white man changes to a red hand while I'm still in the middle of the
cross walk, I look anxiously to my right and wish I could move more
quickly. When class is over, and everyone else has gone while I’m still
packing up, I wish I could move faster.
however, moving slowly is a blessing. Before my tumors, I would dash from place
to place trying to get as many activities into a day as possible. I was
unlikely to stop to say hello if you were walking by. I was unlikely to notice
the particular curve of a cherry bud. I was unlikely to notice the gift of my
When I left my job at one school and fretted over how I could make a difference in public education, my friend Declan asked me, “Why are you in such a hurry?” The question caught me off-guard: I had thought that I was racing about because I was passionate about improving public education and hadn’t realized that my racing about was about time and anxiety.
the months preceding my diagnosis with my first brain tumor, I fell running from the parking lot to the
classroom and from the classroom to the Xerox machine (the one that worked: in
another school). There was so much to do and so little time.
before my tumors, from reading poetry and listening to poetic lyrics of some of the sixties' songwriters, I recognized the violence in such a
panic. The narrator of Marvell’s “To His Coy Mistress,” for example, gets so
worked up about not having “world enough and time” that he sounds like a
frenzied rapist, telling this mistress that “worms will try that long-preserved
virginity…” Simon and Garfunkel sang to me, "Slow down, you're moving' to fast. You've got to make the morning last…." In “Keeping Quiet,” Neruda’s wise narrator invites the reader to
slow down, to be still, and to be quiet:
If we were not so
about keeping our lives moving,
and for once could do nothing,
perhaps a huge silence
we might interrupt this sadness
of never understanding ourselves
and of threatening ourselves with death.
I raced about before my tumors, I had begun learning about the gifts of moving
more slowly. Poetry and yoga were my teachers.
I taught poetry to my high school students, I tried to teach them to slow down
and notice, to read the same poem over and over, to slow at a phrase or even at
a word. I didn’t like recipe-like lists in textbooks that trained students to
read a poem, so I created my own list. Read the poem to yourself. Read it
aloud. Several times. Ask someone else to read it aloud…Step four: Notice what
you notice. (My yoga teacher Victoria says this, too, thus supporting my theory
that yoga is body poetry.)
my students, I didn’t make explicit the instruction to slow down: I merely
taught them techniques for slowing down, hoping that they would see the value
in the experience. I was not yet conscious that slowing down was what was key: because
I didn’t know it for myself, I didn’t know to tell them about the importance of
slowing down. Indeed, everything else in the world seemed to tell all of us to speed
teaches Art History and talked about the importance of taking time to look
closely at art: she requires her students to spend three hours just looking at
a piece that they will later write about. She writes about all that she noticed
when looking at John Singleton Copley’s A Boy
with a Flying Squirrel, 1765.
I have always gone through an art museum in this way: whipping
through first to choose one piece with which to spend my time. I choose a piece
of work, perhaps a painting or a photograph or perhaps a three-dimensional
something. I choose something I’ve never heard of, something that crowds do not
gather around. (I did not choose “The Mona Lisa” when she was a choice: all
that bustling and all of those flashbulbs interrupted my seeing, really seeing.)
My professor Morna read the article, too, and told me about the
importance to her of Seurat’s “The Bathers” in London decades ago, the way that
she carried its image in her mind all these years, the breath-taking moment of
seeing the piece again as an older person. Of course, I looked at the painting
on-line, and though I’m sure seeing it in person has greater power, I too spent
time with a piece that in its pastels and its ease is calming. One day, I will
see that painting in person. And I will slowly dig a friendship with it.
best teachers, the poems of my heart, teach me to slow down. Roethke wakes like
I do: “I wake to sleep, and take my waking slow….” Keats’s Grecian Urn, a
“foster child of Silence and slow time” teaches him—and by extension me—“Beauty
is truth, truth beauty,—that is all Ye know on earth, and all ye need to know.”
(How great to know all ye need to know!) And of course the contemporary, lovely
Mary Oliver, who is all about slowing down, teaches me as she learns in “When I am Among the Trees,”: “Walk slowly, and bow often.” When I slow down, I
notice the sacredness of all that is around me, and so I, too, bow.
a recent ritual of loss and celebration for the changes that the tumors brought
to my life and to Ann’s, we listed separately the losses and the gifts that
we’ve both experienced. Both of us listed “Slowing down” as a gift. It has
perhaps been the best gift of these tumors: Slowing Down and its sisters
Gratitude and Connection.
could end there, but I must tell you this, too. My other professor this
quarter, Bonnie, (it was a good quarter, but hard as perhaps you have noticed)
told the story of a colleague who runs from room to room. They work on a team in
palliative care with people who are dying, and Bonnie moves slowly both because
her body demands it and—I’m guessing—that’s the way one moves in sacred space
(and when one is wise, all space is sacred). I could see my younger self in
Bonnie’s description of this colleague dashing about.
telling the story of her frantic colleague, Bonnie shook her head, looked down
a bit and laughed gently: “Bless her heart.” Now, so far as I know, Bonnie is
not a Southerner, but she used this Southern idiom exactly rightly: In the
South, we say, “bless her heart,” when we are saying something about someone’s
misguided but sweet innocence. The expression is not condescending. We use it when we recognize our own humanity in someone else. When we say, “bless her heart,” we are more wise
than the one about whom we speak, but we are also in that moment kind, even
affectionate. Perhaps we see our younger selves in that person.
Bonnie shook her head at this frantic person, and as a class we blessed her
heart. And perhaps in that story we learned to slow down. Perhaps. And if not,
bless our hearts.