A Photograph of me without me in it

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

Tuesday, October 28, 2014

Time to Stop and Listen to the Roses

Today, I'm tired. Weary to the bones. I was yesterday, too. And the days before that. When I passed Laurie at my practicum at the National MS Society (great place) yesterday, she asked, "How are you?"

I know most people ask that question out of habit and don't really want to know, but I always answer as if the person really does want to know. "Tired," I said, and Laurie stopped to hear more and told me a parable a friend of hers had shared with her. She cupped her hands like a tea cup and said, "My friend told me that we are like teacups, only half full. We need to let ourselves restore until our cup flows (she might have said floweth) over. That overflow is what we have to give." With this, she gestured with one hand's fingers, demonstrating the water flowing over the cup, her other hand." Cool. Her friend must be a psalmist. 

This was the reminder I needed, a return to the most important things I've learned with these brain tumors: Slow down. Breathe. Love the moment. Her reminder was so spot on that I felt myself getting a little teary. How quietly amazing to be understood passing in the hallway.

Why do I forget this simple and not so simple lesson so quickly? Before surgery and radiation, I rushed about, rose early to exercise and do yoga and get to school to prepare for the day (which I had done the night before as well.) I would run from space to space, hurrying to fill my day like Lil' at Camp Seafarer had implied I should: like a suitcase packed full.

Since surgery, I have slowed because I must. I know this slowing down is a gift.  I walk slowly, leaning on my cane. I stand slowly, checking to make sure I have my balance. I read slowly, too slowly to read addresses on the building I ride by or the captions on foreign films. Sometimes in class, I feel like my professor is a record on an old record player, a 45 playing at 33.

Though I've slowed down, and now I must sleep 12-14 hours to make it through a day, I'm still packing my suitcase too full. It's still busting at the seams. I have fewer waking hours, and I move more slowly through them, but I'm still pushing myself, draining my cup. I wonder how many times I must learn this lesson…maybe until I really learn it.

I hear myself arguing with this truth that I simply must approach my life more humbly. There are so many interesting things to do in the world, so many ways that my joint experiences with teaching and disabilities could be used to serve others. I have so much wisdom that others simply do not have. (Okay, I know that's not true, but that's how I'm acting.)

As I write this in the Research Commons at school, Gina stops by to tell me about meetings for the committee I've just volunteered for. I nod and recognize the irony.

This morning, in the midst of this wringing of hands, Little Brother Matt brought me back to my center, as Laurie did yesterday. He shared this Mary Oliver poem:

When the Roses Speak, I Pay Attention

“As long as we are able to 
be extravagant we will be 
hugely and damply 
extravagant. Then we will drop
 foil by foil to the ground. This 
is our unalterable task, and we do it 
And they went on. “Listen, 
the heart-shackles are not, as you think,
 death, illness, pain,
 unrequited hope, not loneliness, but
lassitude, rue, vainglory, fear, anxiety, 
Their fragrance all the while rising 
from their blind bodies, making me
 spin with joy.

It's time for me to stop and listen to the roses. I wonder if I will. I wonder if this time I can learn this lesson. 

Saturday, October 25, 2014

My Own Private Diaphragm

All my life, I've believed that my diaphragm is below my belly, but recently I've learned in Jon Kabat-Zinn's Full Catastrophe Living that my diaphragm is actually attached to my lower ribs. This changes everything. 

In our kindergarten class at Pullen Memorial Baptist Church, I watched Mrs. Mackee put her hand to her belly and tried to follow as she directed us to breathe into our diaphragms like they were balloons. We could feel our diaphragm expand as we held our little hands to our little stomachs. For the next 45 years, as music teachers and coaches told me to breathe into my diaphragm, I didn't understand why I never got a deep breath in this way. I thought maybe lungs just didn't have the capacity of others' lungs. 

Sometimes, some observation would bump against this belief, inviting me to reconsider. Before neurosurgery, for example, my primary care doctor told me that the surgeons would love my lungs because they were so big and clear. This puzzled me as I had learned to believe my story that my lungs had unusually low capacity, but I was preparing for brain surgery and didn't reflect on the new information. This time, like all the other times that my misunderstanding had been challenged, I returned to trying to understand my breathing in the context of the diaphragm-under-the-belly paradigm. Like the students in the film, "My Own Private Universe," who held onto misconceptions even when experiential evidence might have led them to a new belief, I continued to believe my version of my diaphragm: My Own Private Diaphragm. 

Now that I know where my diaphragm is, I am breathing more easily, more deeply. This is good because I'm taking a meditation class—Mindfulness Based Stress Reduction—and we focus a lot on breathing. Watching the breath is becoming like watching waves hit the shore, one falling after another, with great energy and no effort. 

Once a week I go to a class of people experiencing anxiety-provoking health conditions where we focus on our breathing, ask questions, hear responses and a little poetry, and breathe some more. We cannot control our experiences, the teaching goes: we cannot control our disabilities, fatigue, cancers, heart conditions, pain, or anxieties. We can learn to control our response to our experiences. We can learn that though we have pain, we are not our pain: our pain is separate from us. 

Our teacher, Carolyn McManus, tells us to find the resting place beneath the words. She tells us that if a thought comes to mind, that’s no problem. We should just recognize the thought, invite it to float in the sky of our mind like a cloud in a blue sky. She speaks slowly and deliberately, like a poet.

To get beneath the words, she tells us we might focus on words or phrases like "in" on the in-breath and "out" on the out-breath. Or "May I be peaceful and joyful. May I experience an abiding peace and joy not dependent on circumstances being agreeable, but something deeper and sustaining." That's a lot of words for not focusing on the words. When she tells us to rest below the words by focusing on words, I think of Walt Whitman's "Do I contract myself? Very well, then, I contradict myself. I contain multitudes." I suppose this is how truth is, apparently contradictory, but really only contradictory in my world schema. 

I am learning that I cannot change that schema by thinking through it. I can only change it through experience of another reality, a reality that does not make sense to me, but I glimpse it as through a glass darkly, so I try to practice though I don’t understand what I’m practicing. 

Carolyn says that in meditation we expand, we and our worlds become bigger. She says that life has taught me that my ideas of life are too small for what life is. "Mindfulness," she says, "is not about peace and relaxation. It's about being present to what is. We're trained in distraction; we're not trained in the present focus. The goal is to be with the moment.... The mind is like a jar of murky water. We need to let it sit, and it will become clear."

I have traveled through so much of my life—a half century—unaware of myself and my present. When life has presented me with evidence of my misunderstanding, I have skillfully ignored the evidence. For example, at the breakfast for my first wedding, I sobbed through my eggs and grits. Though I wouldn’t let myself look at the fear of the life that I thought I was accepting for myself, my body knew. And it sobbed. And I tried to quiet it, to put that terror and that grief into a dark closet of myself where I wouldn’t have to look at it. One day, it would come out and would not go back in. (As a lesbian, I’m aware of the phrase “in the closet.”)

My brain tumors have given me much-needed lessons about being in the present, humility, surrendering control, the violence of rushing, and gratitude.  I am mostly calm and centered in a way that I was not before these tumors.

I am no Buddha, however, and sometimes I am surprised by how events can trigger my earlier self or my traumas—I am not sure which, or maybe they are the same thing. Last week, I was at a training where a kind man who had introduced himself as an “odd duck” (because I was an ugly duckling myself, I like all things duck—except on a plate.) I liked him, and yet at one time it seemed to me that he was correcting me, being condescending, trying to explain the experiences of people who had experienced traumatic brain injury.

My perception of his comments and tone took me back to the speech therapists who tried to work with me after my surgery. I thought these people would not be straight-forward with me about what they were trying to learn and to understand. Though I generally loved my doctors and other health care workers, I refused to work with these speech therapists who didn’t seem to respect me as a person who was hurt but was still a person.

When the odd duck spoke to me, I was instantly furious. Who was he to tell me about the experiences of people with traumatic brain injury? “As a person who has had a traumatic brain injury,” I told him and the assembled social workers, “I hated that kind of interaction when I was in the hospital.”

I’m not sure that he recognized my anger.  I did, and when Ann picked me up after the training, I shared the story with her. I thought she would be appalled, too, but she thought what he’d said sounded reasonable.

This puzzled me, so I kept thinking about it. Twenty-four hours later, I recognized that I’d been triggered by my previous experiences, not by the odd duck. Maybe the fact that I eventually recognized my role in my response shows that I’m making some progress.

I know I’m not supposed to be tied to outcomes, but I’m hoping that one day I’ll be so grounded that I’ll recognize the trigger immediately and watch it float by like a cloud in a big blue sky.

On that day, perhaps I’ll be wise. But I’m not there yet. For now, it’s just me, Mary, bumbling along and trying to be at peace with myself and my world.

Wednesday, October 15, 2014


This past weekend was intense. Friday my partner Ann and I attended the National Multiple Sclerosis (MS) Society's luncheon, where we heard one women speak about her own experience with MS and then her voice cracked when she spoke of her younger sister's diagnosis. Then Craig Robinson, Michelle Obama's brother, spoke about growing up with his dad, who had MS, and about the way that his father's MS--and his grace with the disease--directed his son's life in a positive direction. 

Then that night we saw the film Bulletproof by the team Zeno, a group of people with a range of abilities and disabilities that meets for two weeks each summer to plan and shoot a short film. Two people with disabilities starred in the show, and afterwards the actors answered questions from the crowd.

Saturday, we attended the film States of Grace at the Seattle Gay and Lesbian Film Festival. The film revealed the story of Dr. Grace Damaan, whose early career included opening San Francisco's first AIDS hospital and who adopted with a previous partner an infant, Isabel Allende's granddaughter, born addicted to drugs and HIV positive. Though the child has cerebral palsy and was not expected to live more than six months, she's now a college student. 

Then Damaan was in a head on collision on the Golden Gate Bridge, broke over 200 bones in her body, spent some time in a coma, and then awoke to rehabilitation and learning to live a new life in a new body. She shakes and uses a wheelchair, but has returned to work one day a week in the hospital she helped found, now managing a pain clinic, where she says she understands her patients' pain. 

Dr. Grace was at the film, and when asked how her Buddhism affected her as she healed, she made three points: 1) everything is ephemeral, even joy and pain 2) (I've forgotten two because three made such an impression) and 3) The tragedy is not dying. The real tragedy is not living. Afterwards, I got to shake her hand (she has a firm handshake). I told her that my radiologist had thought it was ridiculous for me to go back to school and to try to work again. "I wish he could meet you," I said. She asked my name, and we shook hands saying, "We can do it."

After the film, Ann said, "I'm wrung out." I was, too. It was interesting to notice what brought me to tears in the events. (I'm not one prone to tears: a therapist told me I needed to cry more often.) "When my little sister was diagnosed…" I heard at the National MS Society luncheon, and I choked back the tears. (My little sister hasn't been diagnosed: her brain surgery was for an accident a couple of years before my brain surgery--let's take a moment to appreciate my parents.) I teared when all those actors with varying abilities took the stage together, and a young man with Downs Syndrome (I think) who had starred in the film wrapped his arms around the waist of a man without apparent disabilities  who appeared to be the leader. Again, I choked back tears when Dr. Grace Damaan said on film, "I don't want to live like this anymore. What's the point?"

There's a point. She knows that now, and she might have known it then: life is a gift, even with its pains and struggles, and we are here mostly to love another and this amazing world. 

I needed brain tumors to understand how small I am and how big life is. I needed brain tumors to know that life isn't about how much I accomplish or how much I'm appreciated (though I like being appreciated). Maybe I needed brain tumors to see the gift of this life. 

In this sense, though I miss hiking and traveling, these brain tumors have been a gift. Some people don't like to hear me say that, but it's true. And I'm one for truth--even when it's odd. 

Especially when it's odd.

Sunday, October 5, 2014


Last night, Bryan and Joe came over for dinner. It was a lovely evening. Ann grilled salmon and peaches, and we all shared stories since the last time we saw each other, celebrating Bryan and Joe's wedding. When we moved onto the issue of race in America, Joe told his own interesting experience with race.

Joe grew up in Australia to parents who had migrated from Lebanon. The family was Catholic Lebanese, which is different religiously and socio-econonically than Muslim Lebanese, both in Australia and in Lebanon. In Australia, Lebanese are not considered white (though Catholic Lebanese are privileged), so in America Joe has had to get used to the idea that Americans see him as white, though he does not see himself that way.

At the end of the evening, when Bryan and Joe had cleared the table (bless their hearts) and headed a few blocks away to pick up their Car2Go, I just felt lucky. In 1990, Bryan was in my freshman English class at the first school where I taught, Greenhill School in Dallas, Texas.

When as an adult Bryan planned to move from the East Coast to Seattle for graduate school, he saw Christine, who had been the English Department Chair at Greenhill, and she told him that I live in Seattle, so he called, and we see one another from time to time now.

As a high school freshman, Bryan was skinny with long curly brain hair. Now he's muscled, shaves his head, and sports the unshaven look popular on men's faces these days. He's still bright and kind with the same lovely green eyes, but he's closer to forty than fifteen now.

Seeing Bryan is such a gift. Seven years ago, after 27 years in education, I had to leave my career because two tumors, surgery and radiation left me with disabilities that made work in the schools impossible. I had overworked as a teacher, and now there's some relief in getting a second chance at the way I live my life. I tell myself that this time I will be healthy. I will take care of myself. I will not submit to what Thomas Merton called "the contemporary violence which is overwork." Though there's a gift in this new chance, there's still the heart-ache of having left a profession, the students and colleagues, I loved.

Though I'm excited about my new career as a therapist for people with life-changing health conditions, I miss teaching, and I love connecting with previous students. Recently, I've also heard from Yessica, who was a freshman in my high school English class in 200, the year I had to leave early for brain surgery. Yessica was disillusioned with school when I met her: Now she's graduated from college, has a baby girl, and is applying to law schools.

I've also heard from Erica, who is now a mother and a lawyer, whom I taught in Issaquah, WA, in the 1990s. Erica contacted me via Facebook after seeing me on another previous student's page. (Some people avoid Facebook like they avoid addictive substances, and some struggle to give it up or at least pause for Lent. Not me. I love it for the way it connects me with people and places from my past.)

In April, Ann and I visited our previous student Chancey, whom we taught in the 1990s and who is now an inspiring educator herself in Minnesota. And we visited Angela, whom I taught in 1988 in Dallas. I also worked with Andy, the bright daughter of my previous student Stephanie, on her scholarship application essays. And in March, our previous student Sara, another from the 1990s, came to my fiftieth birthday party and was voted most popular among all these strangers. (Okay, we didn't really vote, but the vote wasn't necessary: she was the clear winner.)

The list goes on, and I'm so glad it does. I love hearing from these previous students. A couple of years ago, my previous student Alan--another from the nineties-- contacted me with Shakespearean lines which I have always found amusing for their exaggerated sentimentalism:

Then can I grieve at grievances foregone, 
And heavily from woe to woe tell o'er 
The sad account of fore-bemoaned moan, 
Which I new pay as if not paid before. 

How great is that? He connected with these lines from sophomore English after twenty years! That does my heart good.

Bryan has triggered in me this gratitude, and perhaps I'm also thinking so much about my previous students because it's fall, the new year for students and their teachers, for most of my life a time of beginnings more than endings.

Of course, there were students I was unable to reach, and I think of them as well. For example, I had another student, a sophomore, in the 1990s who had talked with me about the abuse he had experienced at home. He then dropped out of school. A few years later I saw him on a busy street corner, begging for money so that he could get high on his 21st birthday. The next time I saw him, this time already high, he yelled out across a crowd at me, "Hey, I know you! I never forget a face…" And then the last two times I saw him, clean and scrubbed, walking briskly to college with his classmates, sharing with me the story of becoming clean and sober and now loving school again.

I had always ached for the students I couldn't reach--I still do--but this student taught me some humility that gave me peace: I was not the end for him. I'm sure that there is a variety of other stories, some happy and most not.

Fall is a hopeful time of beginnings for students and teachers, but it's a time of melancholy for so many poets, and I connect to their melancholy, too. I feel the ache of not teaching now.  I think of all those students I'll never get to know, of all the inspiring teachers I'll never get to work with. I, too, " can... grieve at grievances foregone,  / And heavily from woe to woe tell o'er  / The sad account of fore-bemoaned moan,  / Which I new pay as if not paid before."

One of my favorite fall poems is ee cummings' a (l , which I remember in this way:

a (l

I remember putting this on the overhead (back in the day of overheads) and my student Roger saying, "Wait. Put that back." The poem takes a minute to take in: I imagine it as a visual of a leaf falling, all the ones, l's, and i's, reflecting the loneliness of a dying leaf. 

The poem reminds me of a cartoon which is a poem: young Snoopy watches across several panels as a leaf falls. He looks at the fallen leaf and puts his paw on it. He looks up and thinks, "I killed it." 

And of course there's more Shakespeare, who sees in the bare trees his aging body and the closing of his life:
That time of year thou mayst in me behold
When yellow leaves, or none, or few, do hang
Upon those boughs which shake against the cold,
Bare ruined choirs, where late the sweet birds sang.
In me thou see’st the twilight of such day
As after sunset fadeth in the west;
Which by and by black night doth take away,
Death’s second self, that seals up all in rest.
In me thou see’st the glowing of such fire,
That on the ashes of his youth doth lie,
As the deathbed whereon it must expire,
Consumed with that which it was nourished by.
   This thou perceiv’st, which makes thy love more strong,
   To love that well which thou must leave ere long.
(No, I don't believe the happyish ending either.) However, there is another side to fall that I do believe. The Romantic poet Keats captures fall's beauty in his lovely "Ode to Autumn", a poem of images with the only interpretive lines: 
Where are the songs of Spring? Ay, where are they? 
Think not of them, thou hast thy music too,—
Why "autumn," not fall? Last year on NPR, I heard that leaves do not actually fall, as the season's title suggests, but they have "abscission cells", a word with the same root as scissors, meaning the cells are designed, like scissor, to make a cut. So the leaves do not fall. When the time is right, the tree cuts them loose, or the leaves' scissors cut themselves loose, depending on whether you think the scissors belong to the leaf or the tree, and the leaf is released from a life that is no longer its natural place in the universe. 

I love this graceful acceptance of the natural order of life, so henceforth I will call this season the more poetic "Autumn" (from the French, of course) instead of "fall." 

Perhaps because my tumors and disabilities, I feel myself entering the fall of my life at the young age of fifty. It's an early fall for me: a lovely time with the ache of loss and the awareness of my own coming winter but also fond memories of the spring and summer of my life and love for this time in the year and in my life, a time of ripening apples and golden light angling across the trees their limbs like paint brushes, green at the trunk, reds and yellows toward the ends, a reminder of the cold to come, and beautiful in this moment.