Gratitude

My first good friend with disabilities, though hers were invisible, was my college friend Jenny. She had childhood-onset diabetes, which affected her ability to see, especially at night. She was also color-blind. She wanted to go into medicine, but she could not see the little flags on the pig in the Biology lab to identify body parts, so she took a long road. Now she’s a psychiatrist, and she’s thriving after a kidney transplant.

Jenny came to visit after my surgery, and she told me that one day I might be grateful for my tumor. I inferred that she is grateful for her diabetes, and I admire her wisdom, but at the time I was not yet grateful.

Though I still would not choose a life touched by tumors, almost five years after neurosurgery, I am grateful for so many gifts in my life, gifts that I recognize more now than I did before my tumors.

Like my other inspirations, Jenny has a great spirit and a delightful sense of humor. One night when we were in college, I called her on the phone for emotional support. She lived in a dorm on another part of campus, about a ten-minute walk away, and she said she’d be right over with a cup of tea.

When she hadn’t shown up after an hour, I started to worry, but Jenny finally arrived, a mug of cold tea in her hand. She had miscounted her steps as she was walking in the dark and turned off a path into a tree. She had long hair and got tangled in the tree; when she finally extricated herself, she couldn’t figure out how to reorient herself. The cute boys on the porch who watched  her wrestle with the tree helped her to point her toes in the direction of my dorm.

She laughed hilariously as she told me this story. Then she apologized that my tea was cold. I laughed, too. Her sense of humor helped me to gain some perspective on my own troubles.

Little Brother Matt asked me recently how my spirit has remained so strong in the days with these tumors and my disabilities. I have puzzled about this strength of spirit myself. Where did this spirit come from?

Today's sermon, titled "Dayenu", from Hebrew meaning, "It would have been enough..." made me think about gratitude and its role in facing life-changing struggles.

Our minister cited Brian McLaren's book Naked Spirituality: A Life with God in Twelve Simple Words (the book's about 80,000 words...so maybe those twelve words aren't so simple).

McLaren posits that gratitude may be our greatest road to happiness. He also tells of a time when he experienced insomnia and took that time to picture all that he was thankful for. I gather that gratitude helped with his insomnia.

My primary emotional response since the brain tumor diagnosis has been gratitude: for a loving partner-a rock in my life, a family generous with care and support, communities and circles of friends and colleagues who seek to help me use my skills and experience meaningfully, professional care-givers, health and disability insurance, the flexibility of administrators and directors in helping me continue my education and work in schools as I recover, wonder in the world's extravagant beauty and a faith that cradles me and gives me hope.

The closing of Wordsworth's "Intimations of Immortality" reminds me of the miracle that remains, of the joy in living even in--and maybe especially in--times of loss, the power of natural beauty to overwhelm me with a sense of this miracle that is living. Wordsworth writes,

The innocent brightness of a new-born Day
Is lovely yet; The clouds that gather round the setting sun
Do take a sober colouring from an eye
That hath kept watch o'er man's mortality;
Another race hath been, and other palms are won.
Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
Perhaps I have found strength in this gratitude. My life has changed, and I am grateful for the life I had and for the life I now have.

I am grateful for you, too. Thanks for being here. Mary

Seattlle Crosswalks

Soon after I moved to Seattle, Mom was visiting and when the traffic cleared, she headed across the street against the light. When she got to the middle of the crosswalk, she realized she was alone, turned back to the crowd on the corner and asked, “Where is everybody?” Then she returned to the curb to wait for the light to change like the rest of us.

Pedestrians in Seattle wait for the fellow in white lights to tell us it's time to cross. We are patient. Once we get in our cars, however, we're not so good.

A couple of weeks ago, I was walking to the bus stop. I crossed an intersection that is usually busy, but on this day at this time, there were no other pedestrians, and there weren't even many cars. As I waited at the corner for the white man in lights to signal me to cross the street, I thought, "There's not much traffic. Maybe this is good. But the day that the monster Bronco smashed my little Honda Civic was a day of little traffic in an intersection that was usually busy. I must be wary."

When the little man in white lights appeared, I looked around the  corner to my left to make sure that no one was turning right. All clear. No one was turning left into my cross walk, either, so I stepped out. As I got across the first lane and was into the second lane, a white car (white again!), lulled by the unusual lack of traffic, scooted into the intersection and then across my cross walk.

Peripherally, I saw the car, and I screamed, "Holy moly!" them's
strong words) and jumped. (Yes, I jumped. I didn't know I could do that.) I jumped out of  the white car's path, and saw the driver's round eyes, opened large, as I gave the driver my evil eye and continued across the intersection.

The driver looked as surprised as I did. He did not deserve the evil eye. He was trying to get through an intersection where too much is going on and visibility over a hill is difficult. I have heard that a group of parents submitted an appeal for this intersection to be made safer. Their appeal was denied. The board that denied that appeal deserves the evil eye.

I was not hurt, but the near-miss did trigger post-traumatic stress, and I've been jumpy. I'm even more anxious when I ride in a car than I was before. I squelch a screech when I'm afraid that my driver hasn't checked the blind spot or when I see other cars headed for a common space. (I know from high school physics that two objects cannot occupy the same space at the same time.) One dark early morning, I screamed when Ann was unexpectedly in the living room. She did not like this.

I am settling down, but I will contact the city about this intersection. It's not safe. I can't imagine why the first contact didn't cause enough concern to change the intersection by putting in protected left turns.

I also think that as a city we need to demand more patience at stoplights. There is never a time when a pedestrian can step into the cross walk without worrying that a right-turning driver, who also has the green, won't bash us. Busy lights, especially in the central district, where I live, and the South end, (both areas that are traditionally areas where people of color have lived and perhaps for this reason have not been afforded luxuries like protected lefts) should have protected left turns at busy intersections, like the one at 23rd and Yesler where I yelped.

The city should give a little more generous crossing time, at least 22 seconds, which is the time that a woman testing me for disability services for transportion told me that most lights allow for crossing. I haven't timed this cross walk, but I'm guessing that the light allows at most 10 seconds before the red hand starts to flash. My therapist, who is able-bodied and quite energetic, said that she and a friend struggled to get across this same intersection just a week before I did.

I'm going to write the city about this. They will probably tell me that there is no problem, just like Metro did when I pointed out problems for people with disabilities getting seats at the front of the bus. They'll probably ignore me again, just like they have every time I've called to have a handicapped parking space identified in front of my house. But I'll keep speaking up.

Especially now that I know I can yell and jump at the same time.

Connecting in the Freezing Drizzle

Walking to the bus in Seattle's freezing drizzle today, I thought about the conversation that my yoga teacher Anna and I just had.

I was telling Anna about the way that public interactions with African-Americans whom I don't know has changed since my tumors.

As a white middle-class woman, I must have looked like a person of privilege before these tumors--and I was. I still am. But perhaps now I look like a person of privilege who has had a hard time.

I was telling Anna that, for whatever reason,  our interactions have changed so much since these tumors. African-Americans are the most likely to greet me, to ask me how I am, and to bless me as I walk through the neighborhood now.

As I thought about this, a tall African-American man walking towards me waved his cane at me. I waved back. When we got closer, he said to me, "Stroke?"

I said, "No. Brain tumors. You?"

He nodded to acknowledge the brain tumors and said, "Stroke." Then he raised his left arm, in a cast: "It's broke," he said.

It seemed that he wanted to say more, so I waited. He finally grimmaced a little, showing his missing front teeth, and said, "I can't hardly talk anymore."

I nodded as he had and said, "I hope you're going somewhere to get warm. It's too cold out here."

By way of saying good-bye, he said, "See you soon."

I hope so.

Temporarily Abled Toilet Stalls

There are lots of advantages to having disabilities. For example, I get to have a special stall in public restrooms. I love that.

My special stall has shiny bars that I can hold onto so that I don't fall down, and the door swings away from the toilet instead of towards it so that I don't get knocked into the toilet. Sometimes, I even get a special sign on the outside that's blue with a thin person sitting in a wheelchair.

With every bit of sunshine, however, a little rain must fall. The stall for me and my peeps is so luxurious that often a person who is "temporarily abled" (to borrow a term from a Grand Canyon guide in the lovely film, Right to Risk--a documentary about a group of adults with disabilities and their guides rafting down the river)...anyway, a person who is temporarily abled loves the luxury of the stall with the skinny person in a wheelchair sign so much that, despite there being multiple other options, this temporarily abled person chooses the stall for people with disabilities.

If I arrive in the rest room, and several stalls are available, but none of them has the shiny bars and swing out door, I must stand and wait. There's not much to do other than listen and stare. It's awkward.

It's not that I insist on luxury. It's that I insist on not falling in the toilet.

I have asked temporarily abled people about why they think people who do not have disabilities use the special stall when others are available. The most common responses have been that they don't think about it or that they like the extra room.

I have a favor to ask. If you are temporarily abled, and you arrive in the rest room with a choice of stalls, please choose the tighter stalls. I'd appreciate it, and that way I won't be listening to you do your business while I wait.

Thanks. Mary

The Total Experience

Today at our little church, Pastor Patrinell Wright sang Alice Parker and Robert Shaw's "Sometimes I Feel Like a Moanin Dove," with our church choir.

How did she get here? I don't know. Wait, yes I do. It was grace.

In 1964, the year of my birth, she traveled from her Texas home to make a home in Seattle, WA, just so that she could sing to me today. I'm not sure where today's lyrics came from, her own rendition or an older rendition that I can't find.

This morning, she lifted her arms and sang with a soulfulness that took my breath away. She sang of sadness, "Sometimes, I feel like a moanin dove," and "Sometimes, I feel like a motherless child," and she sang of beauty's power, "Sometimes, I feel like an eagle in the air."

The sadness and the beauty lifted me. Her presence lifts me, too. She's given her gift of song and of spirit to the world in a way that has often brought her onto stage with famous folk and into public awards and recognition for all that she has given.

In my little church, however, she faced the congregation and, before she sang, she folded her hands in namaste, a greeting that I learned in yoga that means, "I honor you." She put her fingers to her mouth and blew us a kiss. I learned this signal, "I love you," long ago.

And then she sang. I sat in my pew and believed that she sang to my cross-eyed and somewhat crippled self. I felt honored. I felt loved.

At the end of the service, I wanted to say thank you, but she was already gone. I didn't hear the boards creek when she left. It seems that she left more quietly, as angels do.

Living Backwards

"Now ordinary people are born forwards in time, if you understand what I mean, and nearly everything in the world goes forward too. This makes it quite easy for the ordinary people to live. . . . But I unfortunately was born at the wrong end of time, and I have to live backwards from in front, while surrounded by a lot of people who live forwards from behind."
- Merlyn in T.H. White's Once and Future King

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Our birth is but a sleep and a forgetting:
The Soul that rises with us, our life's Star,	60
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come	65
From God, who is our home:
Heaven lies about us in our infancy!
Shades of the prison-house begin to close
Upon the growing Boy,
But he beholds the light, and whence it flows,	70
He sees it in his joy;
The Youth, who daily farther from the east
Must travel, still is Nature's priest,
And by the vision splendid
Is on his way attended;	75
At length the Man perceives it die away,
And fade into the light of common day.

--Wordsworth, "Ode: Intimations of Immortality"

Like Merlyn, I seem to be living backwards in time. It seems that many others believe, like the poet William Wordsworth, that their youth was the time when they were most connected to a divine spirit, to the center of their true selves.

That was the message of Pastor Jim's sermon today, a message that echoed Wordsworth's mullings in his "Ode: Intimimations of Immortality."

As Jim talked about having felt more whole, more connected to our dreams in our youth, heads nodded, indicating that for some of those with greying hairs in our community, life has moved them away from their true selves. There seems to be a melancholy about this loss.

Though I like Jim a  lot and like to encourage him in his preaching, today I could not nod my head. Life for me has gotten better, not worse, through the years.

"Children," he said, "seem closer to God." Heads nodded. I think I heard a sigh.

I was happy as a child (at least until middle school.) I had fun. I loved the swings, and I discovered with awe that bricks, when rubbed together, make sand.

I do not believe that as a child I had a clear vision of who I might be, so there was no vision to shatter. I did have a vision of a lovely life, but I did not necessarily envision that that lovely life would be mine. I bit my lower lip and wondered what life I might have.

Now I know. In my life, there has been some loss, especially through these tumors. I can no longer run after a soccer ball or read a passing billboard sign. I can no longer make it through the day without at least a couple of naps.

More abundant for me, however, has been the grace in living a lovely life. I got to be a high school teacher and witness genius and kindness and hope. I have visited places like Lalibella, Ethiopia, and Guarjila, El Salvador, places I could not have imagined from the cul-de-sac of my suburban youth.

I get to live my life with a woman who loves me and with whom I feel whole. I get to wonder at fall colors, spring roses, and frozen berries in the early snow fall. I get to read poetry and nod my head, "Yes."

In living backwards, I grow into my naivete, a wonder in the world, a joy in every day living. I grow into my Yes.

Even Steven

For Christmas one year long ago, Mom gave me a color consultation, but when I called to schedule an appointment, the woman I was supposed to meet with said that she had been hearing voices recently, so we should schedule our time together in the future. Figuring that she had more important things to do than tell me what colors to wear, I didn't call back. Besides, I'm sure I'm a fall as I look really good in the fall.

Which is now. So Ann and I took a driving tour down by Mt. Rainier for a weekend of golds and autumn reds. We went on a loop, climbing over Chinook Pass and White pass as recommended by the Seattle journalist Brian Cantwell.

Friday we took a leisurely drive, stopping a couple of times for short hikes, to Whistling Jack Lodge just over Chinook Pass. Our bay window opened onto golden leaves and a rumbling river. On the lawn, just between us and the river, a carved bear looked really happy about the whole scene. The bear faced the river, so we looked at his bare bear butt. I laughed about the golden mushrooms clustered around his feet, making it look like he had just taken a dump and was awful cheery about it.

Friday night, Ann slapped an intruder in her dreams. In the real world, in my own sleep, the thud of her flat hand across my chest woke me up. She says the slap wasn't in revenge for my act of slumber violence after brain surgery, when I walloped a cowpoke in my dreams and walloped Ann beside me. Still, it's even Steven at last.

The next morning, we thought we'd get away around 10 a.m., but we had breakfast at the lodge's restaurant, and it took an hour for our food to arrive. Ann practically tackled our waitress to ask for some water for me and some hot water for her. I would stay there again, but I'd bring my own breakfast.

When we finally got on our way, we drove to Naches to buy from the last of the summer harvest. Ann reminded me of my favorite Limerick, a limerick that features Naches as Texans say it:

There was an old woman from Natches,
Whose clothes were in tatters and patches.
When asked to compose
On the state of her clothes,
She said, "When ah itchez, Ah scratchez."

In this part of the country, however, they pronounce Naches, "Nah-cheez" so I had to write a new version:

There was an old woman from Natches,
Whose clothes were in tatters and pahcheez,
When asked to compose
On the state of  her clothes,
She said, "When ah itcheez, Ah scrahcheez."

I thought it up on the spot. Really. I should call it "Variations."

Saturday night we stayed in the historic Hotel Packwood, in room 6, where Teddy Roosevelt once stayed. It hasn't changed much since he was there, and fortunately, there were no animal heads jutting from the wall. You had to go down the staircase to see the mountain goat jumping through the wall. I'm not sure what happened to his hind parts.

On the drive back to Seattle today, we stopped for two short and lovely hikes, one to Silver Falls and another to the Grove of the Patriarchs. I can't hike like I used to, but it's nice to remember that there are still places where I can get away from roads and gift shops and ooh and ahh at the beauty of the fall.

Sheila, our GPS, guided us home, and tonight we have a new beer from Kiki to try with our tofu and garbanzo beans. Yum.

Rationing M&Ms

It's hard to explain fatigue, but I read an article last week that did a good job of explaining it through analogy. The writer, Christine Miserandino, created an analogy for a friend who wanted to understand Miserandino's fatigue (www.butyoudontlooksick.com ).

Miserandino compared the amount of energy that one has in a day to a set of twelve spoons. You get twelve spoons in the morning, and each time you do something that requires energy, like eating breakfast or getting dressed, you give up a spoon. When you're out of spoons, there are no more.

I've started thinking of my energy like peanut M&Ms. Every time I need a shot of energy, I eat an M&M. Once they're gone, they're gone.

I get a different number of M&Ms each morning, and I don't know until I've started eating them how many I may have that day. I need one M&M to rise from the bed, one to shower, one to get dressed, one to eat breakfast, and one to go to the sidewalk to wait for my morning ride. I need to plan carefully for using each M&M, so that I don't get caught short in an awkward situation.

If I'm at work that day, I'll need one M&M to get from the parking lot to my office, one to get to a teacher's classroom, and one to be in the classroom. Debriefing with the teacher will require two M&Ms. Because the bathroom and the microwave are both in different buildings than my office, I'll need an M&M to go to the bathroom and another one to heat up my lunch.

When I get home, I can take a nap, which means that I usually get another one or two M&Ms. I'll need them. It will take me one to watch Ann fix dinner, one to eat dinner, and one to lie down on the pillowss in front of the gas fireplace, close my eyes, and listen to Ann read to me. I save one so that I can get upstairs to go to bed round 7:30. Hopefully, I'll still have one to brush my teeth and floss.

If I've been very good, I may get an adequate number of M&Ms tomorrow, but if I've borrowed against my store by pushing myself to do more than I really have M&Ms for, then tomorrow I'll be short on M&Ms. Hopefully, it's not a work day.

On good days, I wake with 16 M&Ms, and I get two more M&Ms for my afternoon nap. On these days, I have to be careful about using my M&Ms too early, but I should have enough for my day.

Some days, I think I start with 16 M&Ms, but by noon it's obvious that I only had ten.

Other days, like today, I may wake to 7 M&Ms, and I have to figure out what to leave out or how to conserve. Writing this blog takes a couple of M&Ms, but it's worth it. Today I was going to go to Group Health for my flu shot, but I'm short on M&Ms, so I hope I'll wake with enough energy to get my flu shot tomorrow. For now, I'll take a nap.

I'm sure you're wondering what color the M&Ms are. On good days, they're a rainbow of reds, oranges, greens, yellows and blues. On days like today, they're all brown.

Off to nap. Mary

Hurtling

"Sometimes I feel that my life is a series of trapeze swings. I'm either hanging on to a trapeze bar swinging along or, for a few moments in my life, I'm hurtling across space in between trapeze bars."--Danaan Parry, Warriors of the Heart 

What I want should not be confused
with total inactivity.
Life is what it is about...
Pablo Neruda, "Keeping Quiet"

"If we could see the miracle of a single flower clearly, our whole life would change." --Buddha

For as long as I can remember, I have thought of my life as a journey, like Odysseus's journey from war to home or Luke Skywalker's journey from clod to Jedi-knight. In this paradigm, my tumors and other troubles are like the one-eyed, man-eating Cyclops or the menacing Storm Troopers. In this paradigm, I must overcome these antagonists in order to continue my journey. If I defeat them, I too will be a hero. In this paradigm, I know the way.

Now, however, I am wondering if my life is more like the still moment in a poem than like the journeys of an epic hero. In this paradigm shift, I wonder if I should sit still and watch closely rather than trying to defeat my anti-heroes. I wonder if I must sit still and breathe and look around.

Sitting and watching. Just being. It's hard work. I don't know the way.

For sure, I need to begin by learning to breathe again, learning to breathe in order to be instead of breathing to run somewhere.

I feel like there's some truth in this, but it's hard for me to get my mind around it.

It seems like there's so much to do. I do believe that this world needs to be a kinder place, and I have committed my life to justice for more through my work in education and my connections with poor communities.

If I am just being, how do I work for justice? That's a conundrum. I am swinging on that trapeze, preparing to let go of the bar that I have held so safely through so many hard times, and now I think it's time to let go. I vaguely perceive a new bar swinging towards me, but I don't know if I'll catch hold and if I do, I don't know where it will take me.

Yoga Month

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure." --Marianne Williamson

September is yoga month. To celebrate, I'm returning to yoga instruction for the first time since brain surgery. I'm working with Cyndi, an instructor at Samarya Yoga Studio who specializes in working with people with chronic conditions.

I feel good about the studio. Samarya is Sanskrit for "community" and the studio is a non-profit organization committed to serving underserved populations. They count people with brain injury as underserved.

Today was my first session, where Cyndi and I introduced ourselves and did a little stretching and balance work. No homework yet. That comes next week.

Yea!

Hope

For Emily Dickenson, "Hope is the thing with feathers." For Woody Allen, "The thing with feathers is my nephew." For me, hope wears a stethoscope and is featherless.

These past few weeks, I've been pursuing part time disability in the school district where I work as a Literacy Specialist. Because I feel ambivalent about the change, the pursuit has been hard.

I am aware that fatigue and other disabilities are making full-time work impossible, so the possibility of a part time job causes me shoulders to relax and my breath to travel to my abdomen instead of catching like a hiccough in my upper chest.

I feel sad, though. I've  committed my adult life to teaching high school students, and I have at last landed in a district wiht a tremendous diversity of ethnicities and language that commits to making real the pledge to teach every student. Since neurosurgery in 2007, I've been working as a Literacy Specialist in the Highline School District in Burien, Washington. I've spent my days helping passionate teachers plan to meet the needs of their students and working with these teachers and their students. It's a great job, and it's taken me twenty-five years to prepare for it and to find it. It's hard to leave it even a little.

I've felt sad, too, because I have worked hard not to give up a life of meaning in response to these brain tumors. Continuing full-time work in education has seemed central to continuing to live meaningfully.

Yesterday, my doctors at Group Health helped me to see this move differently. Dr. Herstein encouraged me to understand that in order to live fully, I need to find a way to live with these disabilities, not just to power through the fatigue and other challenges. My Nurse Practitioner Amy Lynes, always one with the human touch, hugged me as I left her office. My primary care physician, Dr. McCandless, described me as a person who puts positive energy into the world, and commented on how lucky Ann and I are to have found each other. I don't even know if she was aware of how much doubt she was addressing, but I felt eager to live my life anew when I left her office.

In the paper this morning, I read about another woman, the legendary women's basketball coach, Pat Summit, who has been diagnosed with early onset Alzheimers. The Seattle columnist Steve Kelley applauded her courage and lauded the way that in continuing to coach, she will teach the rest of us how to persevere in difficult times.

Kelley's interpretation of Pat Summit's lesson is not the lesson for me right now. I am trying to learn to let go of the details of an old life and to live a full life in my new life. I have been doggedly persistent, perhaps excessively so, my whole life. Now I'm trying to learn what to change and what to maintain as I learn to live with changes that I cannot control.

I guess in the oft quoted serenity prayer, "God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference," I seek the wisdom and the courage to know the difference.

My Easter Story

As Ann finished reading aloud Patty Smith's Just Kids, Smith's memoir about her loving relationship with her soulmate, Robert Maplethorpe, I wiped a tear from under my right eye.

My tear surprised me. I wasn't surprised that I cried. The memoir and its close were moving. My right eye, however, has not teared since I had surgery four years ago. Right after surgery, I could not close my right eye all the way because of nerve damage, but I've regained a lot of control since then, so I've been able to close the eye for some time. Generally, however, the right eye does not water. If I cry a tear, my left eye usually sheds that tear.

At night, Ann puts an ointment in my eye so that it doesn't dry out too much, and during the day I use eye drops. I know that if my eyes dry out, they hurt, and I don't see very well. Thus, this tear feels hopeful to me.

I think of the Ocotillo, my favorite flowering desert plan, which looks like dead sticks buried in the dry desert sand, but in the spring, strange green leaves sprout from its woody stems and its ends bloom a surprising bright red. At a desert museum, I once encountered a sign in front of the ocotillo in its woody winter phase: "Dead or Alive?" Sometimes, as the poet Pablo Neruda writes so hopefully in "Keeping Quiet" (one of my favorite poems), "Perhaps the earth can teach us / as when everything seems dead / and later proves to be alive."

Spring is the time of so much rebirth. Maybe this single tear tells me not to give up where I have given up. Maybe this tear tells me that my nerves may yet come back to life.

I don't want to fool myself, but I don't want to miss signs of life, either. I wonder in what ways the world and I are coming back to life. I wonder if I am noticing.

(I've posted all of Neruda's poem below, so that you can love it, too.)

Mary

KEEPING QUIET -- Pablo Neruda

Now we will count to twelve
and we all keep quiet.
For once on the face of the earth,
let’s not speak in any language;
let’s stop for one second
and not move our arms so much.

It would be an exotic moment
without rush, without engines;
we would all be together
in a sudden strangeness.

Fisherman in the cold sea
would not harm whales
and the man gathering salt
would look at his hurt hands.

Those who prepare green wars,
wars with gas, wars with fire,
victories with no survivors
would put on clean clothes and
and walk about with their brothers
in the shade, doing nothing.

What I want should not be confused with
total inactivity.
Life is what it is about;
I want no truck with death.

If we were not so single-minded
about keeping our lives moving
and for once could do nothing
perhaps a huge silence
might interrupt this sadness
of never understanding ourselves
and threatening ourselves with death.

Perhaps the earth can teach us
as when everything seems dead
and later proves to be alive.

Now I’ll count up to twelve
and you keep quiet and I will go.

Lecturous

Because my dad has often given me unasked for advice, and because we lived by the "Do unto others..." rule, I thought for a while that he wanted me to advise him as well. When I returned from a tough day in second grade, I reported to my father that my friends and I had been guessing our fathers' ages and that my friends thought he was old, maybe even forty. I recommended Grecian Hair Formula. Now that we would both take forty as a compliment, his hair is bright white. I guess he assumed that I, living by that golden rule, wanted him to ignore my advice as I so often ignored his.

When Sister Jenn was in junior high school and Dad was advising her, she asked him, "Why do you have to be so lecturous?

When Dad and I travelled to Alaska with elder hostel (he was elder and I was hostile), he arrived at the bus that was to take us into Denali National Park wearing a plaid shirt and khaki pants. This outfit seemed sartorially inappropriate for a hike to me, and I said to him, "You look like you're dressed for the movies." Later that week, he went into town and paid more for a poop-colored pair of zip-off hiking britches than he had ever paid for work slacks.

Last weekend, on our weekly phone call, Dad begn to tell me a new theory about women: "What I've noticed about women is..." I interrupted him, encouraging him to pause and to think because his sentences that begin this way gernerally lead him to the dog house, and he always seems surprisedto find himself there. Ignoring my admonition, he continued.

I cannot blame him for ignoring my cautions. I have often ignored his.

For all this, I have in many ways been inspired by his life and sought to emulate him. Ralph Waldo Emerson's often quoted  “Letters and Social Aims” works in Dad's favor: “Don’t say things. What you are stands over you the while, and thunders so that I cannot hear what you say to the contrary.”  Dad's deeds speak loudly of a commitment to the value of every individual, to the importance of saying thank you, and to the belief that we are here to make the world a better place.

Dad had two overtime jobs for most of his work life: one a job that paid and the other a job of social conscience. I, too, have often overworked, though since my surgery some would argue that I overnap, and like him I have worked for social justice. His work was on behalf of children, many of whom lived in poverty, without health insurance. All children, he argued as President of the American Academy of Pediattrics, have the right to health care. Following in his footsteps, I have worked on behalf of underserved children, many of them poor and immigrants to the United States, though my work has been in the educational arena.

When I was in junior high school, I went with Dad to the small town where he grew up to pick up a carload of children that he was sponsoring to go to summer camp. Like my father, I sponsor children to go to camp, though the camp I sponsor is for older children and is called "college."

When I was in high school, my dad gave the sermon at the church in the small town where he grew up. We, his children, counted the number of times he said, "Um," but I also heard his message. He thanked each person in that church who had helped to raise him. Like my dad, I seek to say thank you to those many people who have made my life better.

After attending a conservative church in Wichita Falls, Texas, when Dad was in the Air Force during the Vietmam War, Dad determined that he would never again attend a church where everyone was more conservative than he. Sensing that he had much to learn from liberals, he and my mom chose a liberal Southern Baptist church to attend and in which to raise their children. I am certainly more liberal than my father, so for me understanding another perspective means respecting and trying to understand those who are more conservative than I am (that's most people.) I am not so fully committed to this broad-mindedness as he was, as my current church is clearly on the left as was the church of my youth,  but I do seek to enter into friendships with those whose backgrounds and experiences, including those who are conservative, give them different perspectives than mine.

In this time of tumors, I have relied heavily on Dad for advice and support, and I have also relied on him to know when not to give me advice. I am sure that this has been hard for him. More important than his advice, however, has been his constant support and love, his dedication to helping me live a full life. Just as Dad has sought new venues for play and passion in his retirement, I seek new venues for work and play as I learn to live fully with these darn disbilities. Dad and I are perhaps both old dogs learning new tricks, though he is older. Today is his birthday, so he is even further over that hill.

Happy birthday, Dad. I love you. Mary

Recalculating

My Auntie (pronounced "On'tee) Myra says that my dad had planned his life by the age of seven and that he has followed that plan for his life. Though I believe him when he tells me that he decided to become a doctor after he went face first through the car windshield as a teenager and the doctors put him, like Humpty Dumpty, back together again, I suspect there's  a lot of truth to Auntie Myra's observation.

Dad is a planner. He succeeded in schools, went to Duke Medical School, married my mother ("the most beautiful woman he'd ever seen"), went to Wichita Falls, Texas, instead of Vietnam, and had three lovely children. He a had a successful pediatric practice, taught medical interns, lobbied for health care for all children, and became president of the American Academy of Pediatrics. All my life, he worked two more than full time jobs, and now that he's retired, I had been concerned that he might get bored, but retirement seems to have been part of the plan. He travels across the ocean and around the country to see his children and his grandchildren. On pretty days, he plays golf. On not-so-pretty days, he plays competitive bridge. He seems busy and seems to be having a great time.

I suppose having kids was part of Dad's plan but also challenged his life plan. He says that having kids keeps him humble. He also says, "It's hard to be humble when you're as great as I am."

I'm pretty sure that my decision to come out as a lesbian and my two brain tumors were not part of my dad's life plan. I have to give him credit, though. He's adjusted admirably to the challenges. He struggled mightily with both, but now he loves me and my partner, and he's been a great support to both of us throughout my treatments for brain tumors. Like the Access van direction-finder whose driver seldom heeds oral directions, my dad has recalculated.

For a long time, I followed what I believed was Dad's plan for me. I played Dad's sports, did homework like him, and went to his alma mater for college. I believed that he had a life plan for me, born before I was born, and that it was a good plan as it was crafted by someone who loved me and wanted the best for me, so I needed to follow that plan.

As I began to grow up, however, I began to deviate from that plan. First, I did not go to medical school though I believed that was part of his plan. I did not even become a lawyer or an engineer. Instead, I went into teaching high school English. Though I did not believe that teaching English was part of his plan for me, I did immediately find joy in the teaching profession and came to believe that sometimes I would need to deviate from his plan. This was my life, after all.

After high school, I dated two tall, dark, reasonably handsome and remarkably smart guys of good pedigree. This, too, was part of the plan. I was to marry one of them until death do us part. That part of the plan didn't work out. Seeking joy, I again deviated from Dad's plan for me, came out as a lesbian, and married the woman I love. Perhaps recalculating, finding my own plan instead of what I perceived to be my father's plan, was part of growing up.

My tumors have required me to recalculate again in so many ways. I now ride a trike instead of a bike. I read on my Kindle instead of on the page. I hike on level, paved paths with help.

Now in my work life I'm trying to follow in my father's footsteps again and again recalculate. Because of disabilities from tumors, I do not think that I can follow my earlier plan to be a public school administrator, and I do not think that I can continue along my teaching path.

In my work, I have recalculated once already since the tumors and have been a literacy coach, working with teachers who want my help improving their teaching practice. I love this job, as I get to work with teachers and their students in a way that I am now able and in a way that seems helpful to both teachers and students. Now, however, all of these budget cuts may leave me again needing to recalculate. This week I'm exploring how to publish and market my book and am also exploring the world of teaching English to adults, generally immigrants to the United States.

Much of my life since brain tumors--and much of this blog--has been about re-envisioning my life as it unfolds, about recalculating. My life has been about learning that I am not in control, and seeking the grace and the faith to live a life meaningful to me and to others by finding ways to live still in the joy that is life's miracle. My challenge, as I have attempted to relate it here, has been to see still the amazing beauty, the amazing grace, in the fragility of it all.

Though unlike wiser souls, I am still not grateful for these tumors, I am grateful for the compulsion to recalculate, for the gift of continuing to participate in this life, in this world, and for the grace of seeing now that, even as I must recalculate and must learn that I am not in control, still this is a beautiful world. Still, I strive to be happy.

As a teenager, like so many teenagers, I loved Max Ehrman's poem, the poem that exhorts us to "strive to be happy," and perhaps I sensed as a youth that the only possible plan is a plan of the spirit, a plan that Ehrman so gracefully penned. For years, the poem hung on the bulletin board of the desk where I never studied as I was growing up, then in my college dorm room, and then on the walls of my classrooms. I have pasted the poem below in case you do not know it.

The poem invites me to "go placidly amid the noise and haste," to "speak [my] truth quietly and clearly," to "be gentle with [my]self," to remember that I am "a child of the universe," and that "With all its sham, drudgery, and broken dreams, / it is still a beautiful world." For all the career planning that business gurus would have us do these days, it has been the love in my life and the poems of my life that have lead me in this time of great change, this time of recalculating.

Peace--Mary

Desiderata
-- by Max Ehrmann--


Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons;
they are vexatious to the spirit.
If you compare yourself with others,
you may become vain or bitter,
or always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.

Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

Mary wept.

Ever since I saw that episode of "The Waltons" where kids had to memorize a Bible verse, and one slacker memorized John 11:35, "Jesus wept," I have loved this verse. Partly, probably, because it's one of the only Bible verses I can remember in its entirety.

I read in a commentary that in its original languages, this verse would not have been the shortest in the Bible. I also read that the Greek word for "wept" means to shed silent tears instead of earlier weeping, where the Greek work used means something closer to wailing (Jamieson-Fausset-Brown Bible Commentary cited at http://bible.cc/john/11-35.htm)

I can identify with the quietness of Jesus's tear. That's how I cry, too. Last Thursday, I cried. I was working with a talented teacher, Todd, and a challenging high school freshman class that I am getting to know, a group that I am quite fond of. Todd and I had planned together, and I was to start the day's lesson, modelling how to begin a lesson crisply. I know from watching these students on other days and from teaching them and similar groups of freshmen that directions need to be clear and crisp.

With my current disabilities, however, clear and crisp is hard. I have to concentrate in order to stand, and concentrate to look from the left to the right or, especially, to look from a page of writing up to a group of students. On this day, I just couldn't do it. I couldn't move crisply enough to keep them engaged. Once again, I couldn't do what I used to do.

Teacher Todd regained the responsibility of working with the group as a whole, and I worked with smaller groups. After the class, as always, Todd and I discussed what we had learned about the students, what we wondered, and what his next steps with these students might be. After that discussion, I confessed to him how hard it had been to re-experience what I cannot now do. It was in this moment of quiet reflection and confession that I wept.

A few weeks ago, at a naturopathic appointment about my tremors, the doctor asked me if I was experiencing chronic grief. According to my naturopath's tome, chronic grief can cause tremors. I wept then, too.

To understand my emotions a little better, I did a little bit (not a lot) of research on Elizabeth Kubler-Ross and David Kessler's Five Stages of Grief. Stage One: Denial. Stage Two: Anger. Stage Three: Bargaining. Stage Four: Depression. Stage Five: Acceptance.

I'm definitely not in denial, but I wonder if I'm experiencing all of the other stages of grief at once, or at least in rapid succession.  For me, it seems, the process of grieving this loss is more like a washing machine than a conveyer-belt, more turbulent than tidy.

Mostly, I know that I am lucky to be alive and lucky to get to live this life. Sometimes, however, I am just mad, bargaining and unhappy about my disabilities. Having the tumors and their treatments was one thing, but the fun of all that is over now, and I'm ready to return to my days of teaching and running and looking straight ahead with two eyes.

Mary

The Quint of Luuuv

Ann's colleague Adina celerates  "the quint of love."  She pronounces it "luv" with an extended soft "u": "luuuuv." Since the this time period includes Martin Luther King, Jr.'s Birthday, President's Day (depending on the president), and Valentine's Day, the designation seems just right.

Unsure asbout what a quint might be? Is it A) an era: we had the quint of Bush and now we are in the quint of luuuv B) a metaphor from science fiction literature where time is a substance to be measured in "quints": It was a time of love, a quint of romance. C) (we all know C's the most common answer, so it won't be this): Is it a fifth of a school year, so that we have semesters, trimesters, quarters and quints D) Perhaps it's an age, as in the Quint of Acquarius or E) a very naughty word in Jamaican culture. The correct answers are C, a grading period which is a fifth of a school year, and E)  very naughty word in Jamaican culture. (Adina told me about the Jamaican meaning, and I confirmed it on the innernets.. I wonder if that's why their school, which has lots of students from Asian countries, has no students from Jamaica.) As a good reader, you can use your context clues to be assured that in this instance we are discussing a grading period.

In last Sunday's church service, the reading came from the sexy Song of Songs: "Strengthen me with raisins, refresh me with apples, for I am faint with love" (New International Version (©1984) cited on http://bible.cc/songs/2-5.htm). For sure, it must be the quint of love: The Bible tells me so, and so does Adina.

On the radio last week, I heard a remarkable love story, a husband's retelling of the joyous moments of his wife's last days. She was home from cancer treatments, weak, in a wheelchair, and unable to speak. The day before she died, he noticed again how beautiful she was, and he asked her to marry him again. Though weak, she kissed him vigorously and repeatedly on his cheek.

Last summer Ann and I got married in a commitment ceremony at our church. I had survived brain surgery for a tumor and could no longer walk or dance as I used to. I could no longer smile with both sides of my face. My eyes were somewhat crossed. I can no longer hike up mountains or travel in developing countries. Still, she said she loved me. Still, she spends her days with me. Still, she asked me to marry her.

We had a great time. We practiced dancing to Exile's "She's a Miracle" for weeks so that we could dance, and I would not fall. Our families and friends celebrated with us. We shared photos of our lives together: from hiking up Lalibellas's mountainsides to watching waves crash on North Carolina's shores: if you look closely you can see not only that I am affectionately holding Ann's arm, but that she is holding me up. We said our vows and our siblings made toasts.

On this Valentine's Day, as on all days, I am so thankful for all of the love in my life: for friends and family, an astonishing world, our communities of faith and fun and work, and especially for Ann. My heart is full, as is my life.

All my love. Mary

My Sister Jenn

Today is my sister Jenn's birthday, so this entry is for and about her. This is her birthday present. I think she'll love it, though such a gift may be the adult version of making a straw necklace for Mom for Mother's Day. The thought's kind of nice, and pretty cute, but you wouldn't want to wear that necklace out of the house. As I remember, sister Jenn made such a necklace for our mother. To visualize this necklace, do not think of the kind of straw that's like hay that was in the baby Jesus's manger. Think about those red, white and blue straws you get with a soda at the old school soda fountain. The straw necklace sister Jenn made for mom was a patriotic straw necklace, and Mom dubbed it her "kitchen necklace," a necklace she would wear in the kitchen. Sister Jenn was thrilled that her gift had such a special appellation, and Mom never had to wear the necklace out of the house. Brilliant.

Sister Jenn was born about a month before my third birthday, so though there are picture of me before she was in my life, I only remember life with her. I was always aware, of course, that she was my younger sister, that I was the oldest, and that I was therefore responsible for her. I think she's turned out pretty well, so I'll take the credit.

Even though Jenn was younger than I, she was in many ways my mentor. When I was in high school and wore no make-up, Jenn noted that her friend had similar blue eyes to mine, and yet everyone remarked on her friend's blue eyes whereas mine went unnoticed. Jenn convinced me to wear eye make-up. In another moment, when I agonized about where to go to college, Jenn said she'd always thought I'd go to Davidson as it seemed a good fit, so that's where I went, and I wore my eye make-up there.

My Sister Jenn has always been exceptionally beautiful. People liked to compare her to Brooke Shields in the days of The Blue Lagoon, but I always thought Jenn was prettier. When I was first teaching in Dallas, a male student stole my purse, and when the purse was found in the boys' bathroom trashcan, everything was still there except my cash and a photo of Sister Jenn. Creepy.

Jenn's one of those beautiful people who is also smart, so I'm guessing she's inspired some jealousy in her time. As the older sister growing up in my younger sister's shadow, I might have been bitter, but because she was always so loving to me, I just felt proud of her. I still do.

About six years ago, Jenn had brain surgery--a couple of years before I did. Hers was for a traumatic accident, a fall from a golf cart, whereas mine was for a tumor, but still she could advise me: "Whenever they say morphine," she instructed, "you say yes." She also gave me the tip to keep a list of those people who say, "Let me know if I can do anything." That way, when you need a casserole or a car wash sometime down the line when not so many people are offering, you'll have a list to draw from. Maybe she learned such brillliance from our mom of the kitchen necklace.

After my brain surgery, Sister Jenn came to stay with me for a week. One day, when my headache was especially bad, she drove me to the emergency room, but she couldn't figure out how to fold up my wheelchair, so she shared the front seat with the wheelchair rammed in, and I sat in the back. It has just occurred to me that the hospital probably had wheelchairs I could borrow, and we needn't have risked life and limb. Since we've both had brain surgeries, though, we have built in excuses for such oversights.

Sister Jenn loves her four children and truly enjoys them, even though sometimes she says that they drive her to distraction. Her children, now aged ten through 14, used to be younger. One Christmas quite a few years back, Sister Jenn put a special trophy in her own stocking, and seemed delighted when she found that Santa had left her a trophy for the World's Worst Mom. That trophy she still displays proudly on the mantle beside the kids' tennis trophies.

I'm not sure sister Jenn knows how much we love her. When she had her brain surgery, we were afraid she might not live. I burned a candle to protect her spirit. Our brother Matt, in an outburst of love, slammed down his toilet seat and broke it. (I think this remains my sister's favorite story about him--or maybe about anyone.)

Sister Jenn is is alive and funny and having a birthday that is a multiple of eleven. What you can't see now is that she has some unresolved physical issues from the surgery: she cannot put a flip flop on her left foot without using her hand, and she cannot raise her right eyebrow. For that, she is going to physical therapy, but I don't think she has a caringbridge site yet.

Happy birthday to my dear little sister. Mary

My Peeps

Years ago, my friend Rene tried to convince her partner Alex something about community health care for Latinas. Alex, Alejandra, is Chicana and replied, "No, Ren. I know my peeps." I wondered at the time who my peeps were: Southern expatriate lesbians?

Now I know. In some ways, I love to go to the hospitals because I see so many of my peeps there. If it weren't for the doctors, a visit to the hospital would be like a reunion of lots of relatives I"ve never known. My peeps are in wheelchairs. They walk with walkers and canes. They cover their coughs with cotton masks and have tubes in their arms (or wherever). Some are young, and many are old.

When a peep and I pass one another in the hallways, we generally nod to one another. Our nods mean, "Hey. I see you. I know part of your story, and you know part of mine. We have each been through something hard, and we have each experienced loss. We are doing the best we can right now."

In the basement of the hospital that I frequent, there is a long, narrow underground walkway from one building to another. The hall is tiled with those hospital white one square foot linoleum pieces and has low florescent lights. There are no windows. When I'm there, I feel like I'm escaping from East Berlin in the days of the wall. When there are two of us in this path heading towards one another, we have no choice but to watch one another's progress for a very long time. This watching is somewhat awkward, especially since I am very slow, and often the person walking towards me is, too, so we approach one another for what seems a very long time. One of us often attempts humor. Last week, the elderly man heading towards me said, "I hear they're putting in a speed limit." The humor is more an attempt to be friendly than funny. Friendly is important to me and my peeps. So is humor.

A few years ago, I worked at a school that had a program for students with severe disabilities, and my office was near their room, so I saw these students quite often. I was wearing a patch on one eye and walking with a walker at the time. One student, a boy named Jason, stopped each time he saw me and stared hard at my face. He was unable to communicate through speech, but sometimes he would try. Once, when I was walking with the principal and some others, Jason stopped to stare, his face a few inches from mine, and gently touched my face, moving aside my eye-patch. "Hurt," he said. I said, "Yes," and he continued to stare. The principal, who was clearly nervous about this, had him stop, and we went on our way. I explained to her that I thought the attention was appropriate, that it was possible that in all of his years of schooling he had not encountered another adult with disabilities and that he was reaching out to the one adult who might, in some small way, understand his life. We were peeps.

Tomorrow I'm going to the hospital. Supposedly, I'm going to see my neurologist because I've been having headaches, but really I'm going to see my peeps.

Mary

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

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.

Reckoning--Mary