"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
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
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.”
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
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
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.
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.
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.
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.
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.
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.
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.”)
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.
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.
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
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.
some point, he stopped talking and noticed my pin. “Why are wearing the image
of a car?” he asked me.
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.
won’t do any good,” he replied, applying his wisdom to the situation.
just nodded, but to myself I thought of one of my life’s mantras: “Do the right
thing, even if it has no effect.”
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.
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.
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.
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.
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.
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.)
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.
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.
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.
don't even like poetry. Seriously.
just shows me that “love” and “agree” are not necessarily synonyms.
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.
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.
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.
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.
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
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
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.