Mary and Arrow

Sunday, April 16, 2017


Happy Easter! Ann and I love Easter at our church. We don't wear Easter dresses (neither of us owns a dress), but today we dressed in Easter egg colors: (me deep purple and bright green and Ann light pink and strong lavender.)  When we entered the sanctuary, the Jesus window had been revealed from behind the rough brown cloth that's been covering it for the six weeks of Lent, and the choir sang "Allelujuah!" Pastor Ann's sermon was about dancing, and we all sang "Lord of the Dance." There was joy, a sustaining emotion in this church seriously dedicated to figuring out how to include as many people as possible instead of trying to figure out whom to exclude. 

We have to feel the joy, celebrate delight, if we are to continue in our work for justice. 

This most significant holiday in the Christian religion doesn't get all the Christmas hype (thank heavens, so to speak), but the holiday does have a few odd traditions. My favorite Easter story is from the writer David Sedaris, who grew up in my home town. (We even went to the same elementary school for first grade, though he was at Sanderson High School when I entered school.) 

In the personal essay, published in Me Talk Pretty One Day, Sedaris remembers a French class when he was first living in France. People in the class, with an international mix of languages and traditions, try to explain Easter to a Moroccan student who knows nothing about the holiday.

I love to laugh, and I laugh easily, but Sedaris is the only writer who consistently makes me guffaw, and this piece is plain hilarious. 

With a lively mix of basic grammar mistakes and basic vocabulary that tries to get at ideas like crucifixion and resurrection, Sedaris laughs at himself, the absurdity of some traditions, and the difficulty of speaking in a new language. 

The students' explanations of Easter begin with two Polish students trying to explain the crucifixion. One helps the first when she gets stuck. As Sedaris writes: 

The Poles led the charge to the best of their ability. “It is,” said one, “a party for the little boy of God who call his self Jesus…”. 

She faltered and her fellow country-man came to her aid. “He call his self Jesus and then he be die one day on two…morsels of…lumber.”

Explanations continue until the class gets into traditions: a rabbit (if you're in America) brings chocolate...or if you're in France the chocolate comes from a bell that flies in from Rome. Part of what is hilarious is how clear Sedaris is that the night wandering, chocolate-bearing rabbit makes a lot more sense than a flying bell. 

Sometimes, the point seems to be, language isn't the only barrier in cross-cultural communication.The main point is essentially, as Sedaris writes, about faith: " If I could believe in myself, why not give other improbabilties the benefit of the doubt?"

An e-notes writer explains the history of the bunny and the chocolate, and it's interesting, partly because the history is neither so funny nor absurd. It makes sense.

I guess that's the thing about faith. You just can't explain faith or its traditions logically, and if you explain them historically, you might take away the joy. 

Perhaps religion of so many sorts gets a bad rap because some people take even the absurd details so literally. They forget that God likes people such as Sarah who laugh. 

I remember well a story from a friend in a Salvadoran pueblo who recalled a volunteer who had worked to help them when they lived in Honduran refugee camps. "We knew she wasn't going to be with us long," he said. "She always worked. She never stopped to laugh."

If you're in a time when it's hard to laugh, I wish you healing laughter...or whatever it takes to heal. Because laughter is contagious, so you might try laughing with others. You might laugh with me at David Sedaris's piece, or you might enjoy singing along with the Mary Poppins' song, "I Love to Laugh." (I have no idea how Julia Andrews managed to keep a sour face through that song.)

My partner Ann tells the story of her Aunt Mabel who loved to laugh and her uncle Homer, who'd aged out of understanding humor. When someone would tell a joke, Mabel would instruct, "Laugh, Homer. Laugh!"

Years ago, I took students and teachers from a school near SeaTac to see the spiritual leader, The Dalai Lama, who was speaking at Seattle's Key Arena. I was serious about spirituality and about the wise things this Dalai Lama might say that would motivate my students, but he seemed to giggle through the whole thing. This irritated me. What was I supposed to do with that?

Laugh, Mary, Laugh.

Monday, April 10, 2017

Quiet and Healing

Yesterday, I finished reading Sue Klebold’s powerful memoir, A Mother’sReckoning: Living in the Aftermath of Tragedy. Before reading Klebold’s memoir, I read Julie Anderson Love’s memoir Disrupted:On Fighting Death and Keeping Faith about her experiences with a brain tumor in the same place where my ependymomas were, though her tumor was much more aggressive. I had expected Anderson Love’s memoir to resonate with me: I had not expected Klebold’s story to resonate with me in the way it did.

Klebold was the mother of Dylan Klebold, one of two student shooters at Columbine High School. In 1999, the boys shot and killed thirteen people in the high school (twelve students and a teacher) and injured twenty others before turning their guns on themselves.  As Dylan’s mother, Klebold is trying to make an uneasy peace with her own loss in his suicide and questions about her own culpability with the people he shot and otherwise terrorized. 

I have often argued on this blog that my losses from brain tumors have not been tragic: Klebold’s losses were, and I read the book because a friend recommended it as a beginning to understanding the losses of those who were close to a person who committed suicide. I read to understand someone else’s experience, not my own.

However, as good writer’s do, Klebold brought me into her story, and I feel compassion and common humanity with her. I do not compare my losses to Klebold’s. My first brain tumor was as easy to explain as my fingernails. I do not believe I or anyone else decided that I would have brain tumors. In my case, there is no guilt, no wondering about culpability.

I’m just surprised in the way that some of Klebold’s learnings resonate with mine. She had worked for years as a teacher for student’s with disabilities, and she wrote, “Over the years of working with people with disabilities, I had observed that profound loss often brought with it a depth of gratitude for life, a sense of joy, and an ability to be in the present that people untouched by tragedy could not always access.” This has certainly been true for me, and is the central message I seek to communicate.

Klebold writes, too, about the importance of connecting with other people who suffer after someone’s suicide, especially those whose children have committed murder-suicide. I, too, find healing in connecting with others who have experienced loss, especially those whose losses are due to brain tumors.

Klebold also writes about the importance of humor in her life. In my first days home after brain surgery, I was awake for a couple of hours a day, and organized my sleep so that I could watch Ellen Degeneres, a show that I found hilarious. Humor remains important to me. If you’ve been reading this blog, perhaps you know that already.

Humor has been a way to connect with others in a way that often surprises them--and me. Besides, there have been so many absurdly humorous moments since my tumors (like the stranger who told me that I was lucky to have disabilities so that I could have a good parking spot or the guys who helped me across a street I didn’t want to cross. What could I do but laugh and shake my head?) Writing connects me with others, too. (Thanks for being here. Your presence means more than you know.)

For me, writing has been a way to understand myself and my life since my tumors. Writing is part of my ongoing healing. I suspect that writing is part of Klebold’s healing, too, a way for her to frame her life with her son and their history, as well as her ongoing life since his murders and death.

There’s a good deal of preliminary research  showing that writing, particularly when it’s connected to making meaning of difficult events, is therapeutic. I experience this and think it may be a way I can be helpful to others. A couple of years ago, I attended a training from a Seattle-based group called Pongo on how to write poetry with youth in juvenile detention.  Their founder Richard Gold has said, “The act of writing is an act of resilience.”

As I seek to be of service since my disabilities have made it impossible for me to have a job, I find myself helping others tell their own stories, to themselves and to others. I serve as a mentor in a writing group for young adults who are homeless (or as one corrected, “houseless.”) 

For the last year and a half I led a poetry-reading group in an assisted living facility with elders, many of them experiencing various stages of memory loss, and sought to trigger their memories and help them share their stories with one another. When I was there, I helped one writer, a woman of humble but deep wisdom and humor, and I am continuing that individual work though I don’t lead the poetry group any more. 

In the fall, I will lead a couple of reading sessions at a neighborhood senior center, and in addition to that I have volunteered to organize poetry writing and performance for a dementia event. I also may apply to work with Pongo, writing poetry with youth in a juvenile detention center near my home. 

As before my tumors, there’s so much interesting and helpful to do that I need to be humble enough to know my limitations and not to succumb to the violence of overwork that Thomas Mertonwrites about:
“There is a pervasive form of contemporary violence to which the idealist most easily succumbs: activism and overwork. 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. The frenzy of our activism neutralizes our work for peace. It destroys our own inner capacity for peace. It destroys the fruitfulness of our own work, because it kills the root of inner wisdom which makes work fruitful.” 

As I think about this tendency that I see in myself as well as others, I’m wondering why we Americans overwork so much. Any stats show us that Americans work more hours with less time off that just about anyone in the world: we’ve even surpassed the Japanese in average annual hours worked. (The Japanese culture pushed working so hard thatit needed and created a word for “work death.”)

You may argue that as a person who can work only up to eight hours a week, I’m not in danger of overworking. You might argue instead that I’m in danger oversleeping. (I need to sleep about 15 hours a day: fatigue since neurosurgery and radiation has been a bear.) However, there’s something about that psychology of working as many hours as I can, even to the point of nausea, that compels me as it did before my tumors. (I just don’t get paid now, and I am better at taking time to rest and write.)

I seek to learn the wisdom of keeping quiet, as in Pablo Neruda’s poem of the same name :

“Keeping Quiet
Now we will count to twelve and we will all keep still.
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 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 of 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.”
-- by Pablo Neruda from Extravagaria (translated by Alastair Reid, pp. 27-29, 1974).

Perhaps this time that calls us to action for justice for the vulnerable also calls us into silence. As my Irish taxi cab driver told me decades ago, “It’s a conundrum.”

Throughout the Lenten season our church has organized small groups reflecting on the theme, “Faith in a Time of Fear: Prayer and Activism.” The funny thing is that our small group has never met as a full group because so many of us are too busy with activism to come. Back to humor in the absurd.

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

Monday, April 3, 2017

Walking a mile in their shoes

On our trip to El Paso, Texas, and Juarez, Mexico, the sun was delightfully hot. On a desert meditation, I sat on a log in the shade of a constructed shelter because, after radiation a few years ago, I can’t be in the sun. It was a lovely desert day: maybe in the 80s with a slight breeze. Tiny yellow desert flowers bloomed across the sand and little brown birds chirped in the scrub brush. In the distance to my left, the rugged, brown Franklin Mountains formed a natural boundary between El Paso, Texas—one of the safest cities in the U.S. and Juarez, Mexico —a city a football field away from El Paso with Mexico’s highest murder rate. On the other side of those mountains was the much-discussed wall  (more like a iron fence) to keep people in Mexico from crossing over and hiking through the hot desert to El Paso, in the distance to my right.

In this Desert Meditation, I tried to follow my leader’s directions and meditate on what it would be like to be a refugee from Mexico walking through this desert , perhaps escaping violence or poverty. What would it be like to cross these dusty mountains and this hot desert? Mostly, however, I was aware of how well-taken care of I was, of the reality that I could never experience, or really imagine, what these refugees were going through. After all, I sat in the shade, and rocks lining a path told me where not to tread. I had bathed. My clothes were clean. Beside me was my filled water bottle. A few yards away, a bridge with a red handrail could carry me over an indentation that in wetter seasons may be a stream but is now dry and rocky, like everything else. The only thing I feared was the possibility of a snake, but with so many people around, I suspected I was even safe from snakebite. I was not afraid. I was not unsure. My passport was in my pants pocket.

This Desert Meditation occurred the first day of a weeklong border trip that my partner Ann and I participated in with seven other members of our church, Vicky Schmidt, our a spiritual guide from Abriendo Fronteras(Opening Borders) , and Father Bob, a Columban priest in El Paso who does the daily work of welcoming those outcast by our national policies. To learn about life on the border, we gathered in El Paso, Texas, and visited people and organizations there and in Juarez, Mexico. Our purpose was to learn about lives and issues on the border. With all the talk of “bad hombres” and other such language around deportation, this seemed like an important time to learn about this border from people who live there.

In addition to the desert meditation, we interviewed two border agents (both gentle Latino men). When asked about his faith and his job arresting immigrants, one said that he struggles with the humanity of what he does, but also tries to do this job kindly. After all, he said, it is a job, and he’s not responsible for what happens after he turns refugees over to the authorities. He has a family to feed and knows that he will treat immigrants better than others might. “How do you act justly in such an unjust system?” I wondered. It seemed that he was wondering that, too.

Our group experienced moments of heartbreak at a Detention Center, which looked like a prison and treated the detainees like criminals with their chains and jail uniforms, colored to indicate their level of something bad, I’d guess. There we participated in a mass. I looked at the men (in the first group) and women (in the second group) and noticed how young so many of them were. They might have been my high school students. The older ones might have been my students’ parents. In fact, all of them should have been in some respectful place instead of here.

 We also experienced moments of heartbreak at several deportation sentencing hearings. At one, a young man—surely he was a teenager—who had been caught twice using forged papers kept repeating, “I’m sorry, your honor. I know this was wrong…. I have failed my family.” I could only think that a system of such desperation and sacrifice was what was wrong. After the first four hearings, I slipped out to the restroom, and a Latina woman emerged from a stall, her eyes red and swollen from sobbing. I wondered whom she had lost on that day.

Amid the pain, there were hopeful places where people devoted their lives to helping the poor, particularly in Juarez, but in El Paso, too. We visited a “library,” really a tutoring center that served about 90 students a day in a small building in a poor part of Juarez (three tables outside stretched the small building’s capacity.) Cristina, an energetic woman who lives in the area ran the “library” because she could see in her own life the importance of an education.

We visited other places and people of hope, too many to provide adequate details: a medical clinic, a women’s cooperative, a day center for disabled children and their families, transitional housing for people released from detention in El Paso, and so forth.

One woman who was a refugee from Juarez violence that killed three members of her family served us dinner one night. Another night, our group cooked and served dinner to residents of one of the transitional houses. (I didn’t help, like at home. I just talked and listened, mostly to an older woman and her adult daughter who reminded me of the extravagantly odd women, relatives of Jackie Onassis, featured in the film Grey Gardens. They were not refugees but came twice a year on official business. The younger woman commented that she’d rather have puppies than children, and then the two women wove tales of exotic animals in their Oaxaca home: first dogs and rabbits, then a Noah’s ark that included birds, snakes, owls and chickens, and finally, of course, a lion. As my grandmother Edwards would have said with a chuckle, “Such stuff!”)

Throughout this experience, I thought of the Cherokee proverb, “Don't judge a man until you have walked a mile in his shoes.” (Joe South and the Believers recorded a song on this theme  that was later picked up by Elvis Presley 

My kind friend Ellen pointed out that you have to take off your own shoes in order to walk in someone else’s shoes. An excellent point. There have been so many variations that deepen the metaphor.

A photograph of shoes by a janitor at a detention center connects to this metaphor and calls to mind comparisons to collections in Washington D.C.’s Holocaust museum . (All of his photographs are powerful.)

Harper Lee’s wise character Atticus changed the proverb in his advice to Scout: "You never really understand a person until you consider things from his point of view […] until you climb into his skin and walk around in it" (3.85-87).

Though shmoop’s comment that this sounds too much like Silence of the Lambs  is true and raises horrifying images, Atticus’s variation makes sense to me. I can no more walk in someone else’s shoes, even if I take mine off first, than I can climb into someone else’s skin.  Nor can anyone really understand my experience. (As Ani DiFranco once sang at a concert when she’d forgotten the words to the song she was singing: “Me, me, more about me, more about me…)

As I struggle with injustice against so many people: African Americans, Native Americans, immigrants and refugees, people who live in poverty, women, disabled people, GLBTQ and so forth, I am considering how best to work for justice.

Because I’m disabled, I speak sometimes from that experience, but I’m aware that even then I speak from my own experience and not from the experience of others with disabilities. I’m also a lesbian, and speak out for women’s rights and GLBTQ justice, but again I’m aware that I speak for myself and not for all women or all lesbians.

In most other areas, I am privileged in this society: I am white and educated. I grew up in an upper middle class home in the suburbs. I’ve always had health care. I own a home. I’m married.

Teresa Thuman, Sound Theatre Company’s artistic director in Seattle, Washington, inspires me with her approach: Last year, her theatre focused on the black experience in America, and she said she used her privilege to help support black voices by listening and providing the platform she had: She had black directors and actors, and they performed black works. She listened carefully to their ideas about editing and staging.

Since my disabilities, I am better at listening than acting (by which I mean taking action: I was never a stage actress and never will be). Perhaps this ability to listen but not to act is a gift. Perhaps I need to listen and to raise up unheard voices, not by speaking for others but by providing a forum for others to speak for themselves.

I’m starting in small ways: as a mentor and writing guide to homeless teenagers, I help them tell their truths. I led a poetry group for 16 months that invited elders in assisted living to share their thoughts and experiences, and I plan to do that again. I volunteer at a welcome van in order to help immigrants leaving a detention center in a nearby town find what they’re looking for. I’m in my church’s  Race and Spirituality study group, where my favorite works have been by African-Americans. (I highly recommend The New Jim Crow by Michelle Alexander and The Third Reconstruction by William J. Barber II.) Since my brain tumors, I don’t have the energy I’d like to have to do all that I want to do for justice. Actually, I never did.

(Humility is another thing I’m learning. This quotation from Bishop Ken Untener of Saginaw on the anniversary of Oscar Romero’s  assassination inspires me):

It helps, now and then, to step back and take a long view. The kingdom is not only beyond our efforts, it is even beyond our vision. We accomplish in our lifetime only a tiny fraction of the magnificent
enterprise that is God's work. Nothing we do is complete, which is a way of saying that the Kingdom always lies beyond us.
This is what we are about. We plant the seeds that one day will grow. We water seeds already planted, knowing that they hold future promise. We lay foundations that will need further development. We provide yeast that produces far beyond our capabilities. We cannot do everything, and there is a sense of liberation in realizing that. This enables us to do something, and to do it very well. It may be incomplete, but it is a beginning, a step along the way, an opportunity for the Lord's grace to enter and do the rest. We may never see the end results, but that is the difference between the master
builder and the worker. We are workers, not master builders; ministers, not messiahs. We are prophets of a future not our own.)

So, for now, I listen and learn and try to allow space for voices too often unheard. That’s all I know to do. Please let me know what you’re doing. Also, I’d love to hear what more I could be doing.

Saturday, March 18, 2017

Making Peace

Last night, my partner Ann and I went to a Moth Story Slam in Seattle. I know about The Moth from the radio hour on KUOW, our favorite National Public Radio station. On the radio, people tell short stories on a theme. It’s lovely.

When I learned that The Moth sponsors performances in Seattle, I decided to attend. When I read on the website that people could sign up to tell their stories on a selected theme to an audience, I decided to try.

Public speaking isn’t generally my forte. In my early twenties, I gave a sermonette at my Southern Baptist Church and fainted in front of 400 people. In the three decades since then, I’ve presented mostly to small crowds, generally 7 (in a private school) to 42 (in a public school) high school students in my classes. Sometimes I've summoned the courage to speak to 70-100 people at church. 

Even in those classes and when I've given sermons or other talks, I always had notes, but now many Sundays I speak a short welcome to all at the end of a service. Tonight I’d have to speak without notes. I worried that the pressure might make me faint.

I had imagined that there might be forty people sitting at round tables with low lighting, so I invited some friends to come. I thought it would be nice to see the supportive faces of people I know in the audience. Though some part of me knew this would be a contest, I didn’t think about the contest, and I certainly didn’t think about winning. I figured not fainting would be a success. Being well-received would be a bonus.

As it turned out, the venue was a large room on the St. Mark’s Cathedral property. The space was used by a Waldorf school during the week. As we drove into the parking lot, 45 minutes before the show, there were a lot of cars. We could see a stream of people moving swiftly through the dark rain, going in the door that I thought must be ours.

I figured there must have been some other event nearby, but when we found “Skinner Hall” we entered a large room with rows of folding chairs. A third of the seats were already full. Six people had already put their names in the cloth shopping bag to read, and I knew they’d only choose ten people to read by drawing names randomly out of the bag. I had hoped not to faint. Now I just hoped to tell my story.

At 8:00 pm, the people in charge flashed the florescent overhead lights, and about two hundred people took their seats, some on the floor along the wall because there were no more folding chairs. Our friends Susan, Rod, and Pea sat with us. A local comedian joked that they (not a grammar error, an indication that the person identifies as “non-binary gender”)…anyway, that they would draw five names out of the bag, one after each storyteller. Then there would be an intermission, and then there would be five more names.

Mine was the fourth name chosen. With a bright spot light, I could not see Ann or my friends, none of whom were in the first row, the only row I could see. I told my story, and I did not faint. It went something like this:

Picture this: I am at a corner on 1st Avenue about half a mile north of Pike Place Market. It’s a beautifully sunny Seattle day. This is the first day since my brain surgery that I have traveled alone. I’m leaning on my hospital issued walker: metal with two tennis ball feet. [some chuckles] I wear a black patch over my left eye to help me manage double-vision. This is the patch that makes young kids ask, “Are you a pirate?” (I always say yes.) [more chuckles]

So I am downtown, leaning on my walker and hesitating on a corner to get my bearings and to figure out where to find the bus stop that will lead me home. I look across the street to my left, but I don’t see a bus stop, so I look to my right where I spot the bus stop.  Two men who may be in their sixties, may be homeless, walk towards me, between me and the bus stop. I don’t think much about them. When they reach me, they offer to help me across the street. Because I don’t need to cross the street, I say no thank you. They really want to help me, and they insist, I again say no thank you. [chuckles] They persist again, so finally I go with them, crossing a street I do not want to cross. [laughter]
One performs the wild gesticulations of Frosty the Snowman’s traffic cop [more laughter] as I cross the street, so no car hits me. The other walks protectively by my side, pointing out potholes. [more laughter and nodding from heads in the front row] When we arrive safely on the other side, I say thanks and watch them continue down the block. About half way down, they give one another high fives. [more laugher] I wait for them to get small in the distance before I cross back. [chuckles]
The kindness of these strangers reminds me that, along with my losses, there are gifts in this new life. [nodding from heads in the front row]
Sometimes these kind strangers are physically helpful—and sometimes they aren’t—but they always lift my spirit. [more nodding from heads in the front row]. Though I have not made peace with my disabilities, I see in these kind strangers the truth that with my disabilities I have many losses, but I also have experiences I would not have without these tumors. So in some ways, these tumors have been a gift: I get to live two lives in this one. [more nodding from heads in the front row] 
A few months later, my partner Ann and I were walking through the park near our home. I was again leaning on my walker with the tennis ball feet and wearing my pirate patch. A woman with light brown skin that was slightly green stopped me. The scarf covering her head and the flatness in her eyes suggested she was a chemotherapy patient. “Can I pray for you?” she asked. I nodded and gave my name.
I have learned since my tumors that when someone asks me if they can pray for me, they don’t mean quietly or back at their homes. They mean right now. [chuckles] Out loud. [laughter] This caring stranger put her hand on my shoulder, and delivered a graceful prayer: “Oh my Lord, bless Mary on this difficult journey. As she wanders in this desert, let her know that you walk beside her. When she is weary, let her know that you will carry her. In the name of your compassionate son, I pray.” [ahhh.] I said thank you and continued, blessed, through the park.
The kindness of these strangers and many like them help me to make peace with my new disabled life. Just to be clear, I have not made peace. This is not a done deal. Every day, I am making peace.
Amen. [applause—everyone gets applause by the way. It’s a kind audience.]

Ann helped me descend the two steps from the stage and told me I was great. I had practiced with her earlier in the day, and she had given me some helpful feedback about just relaxing and talking normally, and she said this telling was my best one. Overwhelmed by the telling and safely descending the stairs, I forgot to draw the next name, so the comedian did that. As I headed down the side aisle, Megan rose from the floor to hug me. "I'm so proud to know you," she said. Wow. Just wow. 

After I took my seat and the comedian said some funny things, she asked the three scoring teams for their scores. I hadn’t thought about this part. Too focused on grades in my early education, I have avoided anything with scores, but at this point there was no avoiding this. So the teams gave their scores, and I was in the lead at intermission. A pediatric oncologist who had told a story about coming to peace with the parent of a three year-old with a brain tumor, squatted beside and told me how much he’d liked not just the story, but also the performance. He asked about my brain tumors, and I told him that I’d had ependymomas. His jaw dropped, “That’s really, really rare in an adult,” he said.

He also said that he’s now a research scientist in a biotech company at South Lake Union, a pricey area for techies in Seattle. He said that he thinks he’s found a drug for ependymomas. This time, my jaw dropped.

As he and I talked, Ann bought a beer for us to share, a gift which I welcomed. When the light flickered, he and I shook hands, and we all took our seats. During the second act, a woman outscored me, which disappointed me because I’d gotten my hopes up.

On the way home, I confessed my disappointment to Ann and told her I didn’t think I’d learned anything that would help me the next time, but reflecting on the experience in my hour from waking to rising this morning, I realize I did.

As I reflected, I realized that I had given a personal essay—or even a sermon—instead of telling a story with a resolution. (I even ended this time with “Amen,” which I had neither done nor considered doing before.) I learned that having friends there was important to me. I also learned that this was fun, that talking without notes was okay, and that I neither fainted nor felt woozy.

I will try this again. Next time, I’ll wait for a theme that matches a story I have to tell without needing an explanation. Again, I’ll invite friends to come. I’ll have an idea of the size of the crowd. 

I just hope my name will get drawn. And I hope to God I will not faint. 

Monday, March 6, 2017

Soul Thirst

I thought I would feel relaxed and energized after I graduated with my MSW in December; instead, I’ve felt tired and a little lost. I went to the UW’s School of Social Work four and a half years ago with a plan to be a therapist in a hospital for people with life-changing health conditions, but one thing I learned is that the licensing needed to work in a hospital is not possible for me because, among other issues, with my disabilities I cannot fulfill licensing requirements in the required seven years. What do I do now?

I’ll figure out a way to live meaningfully, and I’m already finding opportunities (like writing with homeless teens and discussing books with elders), but in the wake of my graduation, I feel a little flat and I’m asking a lot of questions about my abilities.

Before and after my brain tumors, I’ve facilitated a lot of meetings and groups. Most of them have gone well, but one last week was awful. The meeting has me questioning my capability. Even though I know it was only one meeting, my frustration has piqued my post-tumor insecurities. I’m also having more difficulty with short and medium term memory. Since radiation, I have not recognized the faces of people I’ve met before but don’t know well, but now I’m forgetting events in my recent life, and I lose track of what I’m saying or thinking. My hearing aid hasn’t worked for a couple of weeks (though I got it fixed today.) I’m sleeping fifteen hours a day, like I was closer to radiation. That takes a lot of a person’s day. The continuing losses have me feeling blue. Not dark blue, but not light blue, either. Probably medium blue.

This is the season of Lent in the Christian church, a time for feeling flat and a little blue, so my spirit is in sync with this season. Lent in the Western Christian church is the forty weekdays before Easter, for some people forty days of fasting, abstinence, and penitence, but for me forty days of quiet (not silent) reflection. Those forty days parallel Jesus’s forty days in the wilderness before his crucifixion and resurrection.

Our little Methodist church prepares during Lent more thoughtfully than during any other season, I think. This past Sunday, a simple brown cloth hung over the stained glass window of a welcoming Christ. (That’s always a downer.) At the front of the church was a collection of brush and sticks, desiccated as in a desert scene. Though the choir sang beautifully (as always), they didn’t use the word “Alleluia,” and neither did the rest of us. We never do during this season.

So my church and my spirit are subdued right now. Perhaps others feel this way, too, and perhaps Pastor Ann knew that and that’s why she titled her sermon “Soul Thirst.” She had a cold and was a little sneezy, so her delivery was more subdued than usual, though it was still on the perky side.

I’ve been thirsty, the literal kind that has my lips feel cracked and my tongue stick to the roof of my mouth, since radiation for my second brain tumor. Friends know that when they sit beside me, they will have to fill my water glass throughout our time together. My friend Allyson has me use a Mason jar at her home, so that no one has to fill my cup so often and I don’t go thirsty. My partner Ann bought me a plastic version for home, so that I stay quenched here, too. All this talk about water is making me thirsty, and I could use a break. I’ll go get a drink. You can, too.


Okay. I feel better. In addition to this throat thirst, my soul thirsts now, but I’m not sure for what.

In her sermon on “Soul Thirst,” Pastor Ann talked about multiple times when Jesus and others (like Moses and his followers) spent weeks or even decades in the wilderness. For example, she said that after his baptism Jesus went into the desert wilderness “to figure out his calling.”

Going into the desert isn’t easy. For one thing, there are snakes there. Real ones. Recently, my partner Ann and I went hiking the Andreas Canyon trail, an "easy" trail in the desert near Palm Springs, and it was tough. We took a hike that a ranger recommended for someone with disabilities. I thought I might die. At one point, Ann went ahead to scout the terrain, and when she reported that there were just more rocks and dust ahead, we decided to go back the way we had come. I struggled to land each footfall safely, and when a young woman passed going the other way, and I was struggling to bring my left foot safely down off of a rock, the young woman asked with wide eyes and a kind of desperation, “Do you need any help?”

I looked into her earnest eyes with my crossed ones and responded honestly, “Only if you have a helicopter.” With my disabilities, the literal desert is an especially hard place to navigate. I imagine the spiritual desert is hard to navigate no matter what abilities a person has.

Pastor Ann noted that “We’re not in the desert to fix things, but to see what can grow.” That feels hopeful. She also said, “Maybe we’re in the desert because we need to learn something.” That sounds hopeful, too, but to tell you the truth I’m sort of tired of all this learning and the effort it requires.

Perhaps this spiritual desert is one I’m wandering in now. After these tumors and with these disabilities, after these degrees and with all these insights, I wonder what my calling is. And I wonder if I’ll hear it when it calls. (Fortunately, my hearing aid is working again, so maybe it’s more likely.)

Maybe I’m tired of learning, or maybe I’m tired of trying, and instead of trying to force a death march to the promised land, I need to rest and look around a little. Pastor Ann said that the word “Angel” in the Bible can also be translated as “messenger.” Maybe I need an angel (or a flock of them), or maybe I just need to listen to the messengers who come to speak to me. Maybe they’re here not to rescue me from this desert, but to walk with me here.

Perhaps I can hear the messengers and still be wandering in this desert. When I think of it, though this is Lent, it’s also the season for angels in my life.

Last Monday, my friend and previous principal Rick came for dinner, and we got to catch up. I was reminded of his generous spirit, his kindness and his compassion. Thursday, I was able to witness a writing group for homeless teens. Friday afternoon, I had lunch with my college friend Susan and met her friend Julie, who is another brain tumor survivor and writer (my peep): it was so good to connect with another person who'd had a brain tumor that I looked again for a brain tumor support group, and maybe there is one I can go to now. Friday night, fellow travelers to the Mexico/Texas border joined Ann and me for dinner. (That’s when I led a miserable meeting, but getting together was good.) Saturday night, my friend and previous colleague Sean and his wife Kate joined us for dinner. Sean is younger than I am, a brilliant teacher with a bright heart, and among other things, Kate loves the books I love. Most significantly, Ann walks this path with me, not directing me but helping support as I hold her arm. 

Then during church Sunday, the choir sang to my spirit (I love that), and Pastor Ann spoke about this thirst. Before church, my friend Judy (whom I don’t know well, but love her combined gruffness and loveliness) gave me a fountain pen so that I could again take notes on the sermon (and hence write this blog entry). During church, Ann held my hand. After church my friend Denise told me that this month marks her one-year anniversary in the church, and she thanked me for our connection. (I thanked her, too.)

This week will be another one full of loving messengers: I get to return to the writing group. I’ll visit the elders I got to know when I was leading a poetry group at a nearby assisted living facility, and my college friend Katie of the magnificent voice will visit and sing.

As I think about it, every week is filled with loving messengers. So maybe I need to notice that the desert has its beauty, too. To notice with Pastor Ann, “Sometimes the mundane can be so miraculous.”

Perhaps here in the desert, I need to remember my sister Jen’s teenage direction to, “Just chill,” and my niece Gretchen’s call to “Chillax.”

Perhaps then my soul will drink deep the miraculous.