I Feel a Funeral in my Brain

This morning and last night, I’ve felt a funeral in my brain. Though these headaches are not uncommon since neurosurgery six years ago radiation to my brain three years ago, fortunately they are not typical.

When I was in the hospital after brain surgery six years ago, I had some doozies of a headache, as you might imagine. My doctors and nurses took my pain seriously, thank heavens, and I don’t think the headaches ever got beyond an 8 on a 1-10 scale. (That’s what people in the hospital always want to know… How is your pain on a 1 to 10 scale with 0 being no pain and 10 being excruciating pain? —so it’s really a 0-10 scale, I guess.) I learned that the doctors would intervene at a 7, so that was a key number for me. Anything over a 7 meant, “Please help me.”

When I returned home after almost a month in the hospital, my head rang when the puppies next door yipped and the hammers across the alley pounded. I can’t remember the process over the next couple of years, but I’m pretty sure I didn’t regularly have headaches for a while.

Then the headaches started again, and I was diagnosed with a second brain tumor. When I had a spinal tap to see if any tumor cells were heading down my spine, the needle punctured the lining of my—something—whatever holds in my spinal fluid, and I guess the fluid from the water system in my head drained into my back, and I had an awful headache. This one was my only 10, and I went to the emergency room where they put an IV in my arm and defeated the headache. This was a migraine. If you experience migraines, I have great respect and compassion for you.

When I had radiation for my second tumor, I again developed awful headaches. After a year of these headaches (was it that long?), I started taking a neuro-transmitter blocker each night, and the headaches mostly disappeared. I also learned some exercises that dissipate a headache. I don’t usually have headaches now, but today I do, and I tell you true when I tell you that my vision hurts, and I smell the color blue.

The pain in my brain brings to mind Emily Dickinson’s “I Felt a Funeral, in my brain.” When I was teaching American studies to high school students, I often taught this poem, and I hated the textbook’s interpretation questions with this poem. They led students to believe that this poem was either about a headache or a decent into madness. To me, the headache was too literal for Emily and the descent into madness was a misreading of the poem and a misunderstanding of the proximity of madness to wisdom. This poem, I believed, was about the descent into wisdom, something we more often imagine as an ascent, which is part of what’s interesting. Now that I’ve experienced these headaches and perhaps my own descent into wisdom, I think the poem is about both of those. I still don’t think it’s about madness, and I’ll tell you why in a minute.

The poem begins:

I felt a Funeral, in my Brain,

And Mourners to and fro

Kept treading - treading - till it seemed

That Sense was breaking through –

Yes, I feel (literally) now that a headache is like an internal funeral and the “in my brain” places the event in a particular place in my body, but is parenthetical, not essential, information. It’s true that my head hurts, but really it’s my whole Self that hurts. And “treading—treading”: Yep. That’s what happening in my head: “treading—treading.” Let’s continue with Emily:

And when they all were seated,

A Service, like a Drum -

Kept beating - beating - till I thought

My mind was going numb –

There it is, “beating - beating-” And yes it’s my mind, not my brain, that’s going numb. My brain feels the pain of this internal funeral, but my mind is shutting itself to the pain. Or maybe to anything but the pain. Back to Emily. So far, she’s talking about this headache. (I wonder if she had a brain tumor.) :

And then I heard them lift a Box

And creak across my Soul

With those same Boots of Lead, again,

Then Space - began to toll,

Yes, the creaking is across my soul, not just my brain. To borrow from another of Emily’s poems, the creaking is “where the Meanings are-” This eternal part of me aches. And yes, these mourners wear “Boots of Lead”: a heaviness. “Again.” And yes, space begins to toll…perhaps I’m being too literal here, but there’s a high whine in my universe that is perhaps like the toll in hers.

As all the Heavens were a Bell,

And Being, but an Ear,

And I, and Silence, some strange Race,

Wrecked, solitary, here –

Ah. She’s nailing my headache here. I feel as though my head is in a giant bell. I’m standing in the bell with my head just above the clapper, and I don’t just hear the clapper hit the bell: I feel its vibration. That's probably what causes the nausea. All of me is receptive to all of the vibrations of the universe: My being is but an Ear. I make no vibrations myself. I just ring with the universe’s noise.

And I, and Silence, are some strange race. We are alone in this reception of the ringing. This is not the silence of the Christmas hymn “Silent Night.” This is The Silence of the Lambs.

After describing this pain, Emily describes her existential falling into wisdom. The world of her mind changes, and the poem in no longer about her syntotic experience of an internal dying:

And then a Plank in Reason, broke,

And I dropped down, and down -

And hit a World, at every plunge,

And Finished knowing - then –

So is the grad school student who must have written the textbook right? Is the poet describing going mad? No, I don’t think so, though perhaps madness is one of the Worlds she hits as she plunges. How do we read that last line? It’s key to where she lands. Is “knowing” a gerund, a verb used as a noun, and did she “Finish” in the state of knowledge, or is “knowing” a participle, a verb used as an adjective, and does knowing describe her as ending with knowledge? The two possibilities contradict each other, and yet each works.

As the poet Walt Whitman noted, “Do I contradict myself? Very well, then, I contradict myself. I contain multitudes.” Every teenager and all of us who remember what we learned about ourselves as teenagers, understands what it means to contain multitudes. Emily’s contradicting herself. So I’d say, it’s both: she ends in the state of knowing and she ends her previous state of knowledge. To move into a new way of knowing, after all, requires the death of the old way of knowing.

And why does she end with “then--”? The dash is key. Then…what? Don’t know. Just “then--” That’s what happens when we go into a new way of knowing. Something indefinable past that space.

And if I’ve moved at all closer to wisdom, this process of moving into wisdom has required the painfulness of a kind of death. Later, I suspect, I will be very wise. Maybe that’s the “then--” Or maybe not.

Maybe or maybe not: That’s the beauty of Emily Dickinson.

A Bird Came (Face) Down (on) the Walk

I love the brooks which down their channels fret

Even more than when I tripp'd lightly as they;

The innocent brightness of a new-born day

Is lovely yet;

--Wordsworth, “Intimations of Immortality”

Monday morning, I walked to yoga as I often do. I could feel autumn: the air was crisp, and though it wasn't yet raining, there were dark clouds covering most of a blue sky. A block away, I heard Garfield High School's bell ring, indicating that it was time for students to change classes. Then I heard morning announcements: "Good morning, Students!"


           "It's fall and kids are back in classes," I thought. "I don't get to be there anymore." The thought didn't make me feel sad or angry for having left my 26-year career in secondary education because of my brain tumors. I just felt reflective as I noticed time passing.


           I wound my way through the neighborhood streets, choosing the route that I always take because on my route the sidewalks are least broken and the crossings least likely to have cars racing through: a carefulness in choosing my routes that helps me remain upright as I struggle with balance and walk with a cane. As I crossed onto the sidewalk that would lead me to the bus stop and then on to yoga, I saw on odd sight on the left edge of the sidewalk: a small brown bird, maybe a wren as it had a long tail feather, had died and looked whole and unwounded. It tilted forward on its neck, its beak parallel to the ground and its little feet in the air, its tail raised like a flag. It looked like it had fallen forward. It didn't look uncomfortable in this pose, only unnatural.

            I thought, ironically perhaps, of Emily Dickenson’s poem “A Bird Came Down the Walk”, in which the bird’s liveliness amuses the poet and me:

A Bird came the Walk—

He did not know I saw—

He bit an Angleworm in halves

And ate the fellow raw….


           I paused to wonder how my bird might have died: I saw neither feathers ruffled nor wounds, so "No trauma," I thought. “That’s good.” I've heard that birds are anxious and have exceptionally fast heartbeats, so maybe its little heart had an attack. Or maybe it was just old. (It didn’t have grey feathers, but I don't know what birds look like as they age), and it took life's natural course and died as the fall chill settled in, harbinger of winter days to come. 

I walked on. What more was there to do? This little bird had lived its life—for better or for worse, I have no idea. I guessed this death was natural and gentle, but I couldn’t have done anything now even if it weren’t. So on I went, and began to think again about my own death, as I have many times since my first brain tumor, six years ago.

The first death I experienced was my grandfather’s death when I was three years old. I remember my grandfather, a man who I’ve heard described as an “angel on earth” and “a gentle soul.” I don’t remember his death, but Mom says that she took me to the grave after the burial and tried to explain that Granddaddy was in the ground. She says that I looked confused and upset and kept pointing to the sky and then looking back at the grave.

I am dying. Everyone is, but perhaps those of us who have experienced serious disease—and those who have loved us and witnessed our fragility (and thus their own)—are more aware of our passing days than those who have not glimpsed "the immortal footman hold our coats" (as T.S. Eliot's Prufrock describes his own intimations of mortality).

I am not afraid of death. Though I grew up in a Southern Baptist church, it was a church focused on social justice in the here now. I don’t remember hearing about death in church, except when, as a teenager, a boy a year my senior committed suicide. I don’t even remember hearing about heaven or hell, except as places humans created on earth. I've never been a hell-fire and brimstone person. In fact, the concept of immortal and brutal punishment seems unfathomable to me. I believe in a loving God, and hell just doesn't make sense to me: not for punishment or disbelief or anything. I can see that some people live awfully hard times on this earth: traumatized by the cruelties of war or torture, poverty or addiction, existential or physical pain, but when I have met people who have lived what seemed to me a hell on earth, I have been surprised to learn that they have joy, too: they laugh and love and see the sun. Hell doesn't make sense to me, and it doesn't scare me.

I don't know what Death is. Not really. I don't know what God is either. "Death" and "God" are just words for things that I perceive vaguely. (The poet Rumi said that we should not confuse a finger pointing at the moon with the moon, which I think means that we should not confuse a word, which is a symbol, with its essence. I think Rumi's right.)

Who or what is God? I don't know. It does seem to me that there is a Great Spirit, for want of a better word…or maybe Energy is a better word…or Grace. I suspect that "God" and "Allah" and "Yahweh" and "Om" and so forth are all words pointing to the same essence, something like the American Transcendentalists' notion of the "Over-Soul." (Oh there's another word: Soul), which Ralph Waldo Emerson called, “that great nature in which we rest…that common heart…the wise silence; the universal beauty; the eternal ONE.” For Emerson and for me, “In sickness, in languor, [it] give[s] us a strain of poetry, or a profound sentence, and we are refreshed….The soul is the perceiver and the revealer of truth.”

            This God, this Over-Soul, neither punishes nor rewards. This God simply is. Life simply is. And so Death is, too. For the Transcendentalists and for me, our bodies die and return to the earth: “dust to dust” as the old Anglican burial service has it. Our spirits remain with the Great Spirit. I don’t really know what that means, but I believe that it is so. Perhaps, as the American Romantic poet Walt Whitman writes, “Death is different than anyone supposed—and luckier.”

            I know I will die, and I am not afraid of Death, but I don’t want to die: not now and maybe I won’t ever want to die. I love my life. When I prepared for neurosurgery, I did not want to die, but I did not fear Death. I did not even fear pain. After surgery, when I hallucinated that I was in the crematorium, I was not upset, only frustrated because the hospital was so inept. (My surgeon was upset and reduced my steroids.)

I did not fear my death, but I feared losing my Self, my personality. I must admit that I am attached to my Self. This amuses me because I know that I’m happiest when I’m so absorbed in something or someone that I forget my Self and time and place. Perhaps these moments when I lose my Self will be like my death. Perhaps my body will be a clod, and my soul will return to the Light. Perhaps my soul won’t experience emotions, neither joy nor sadness, and perhaps my Soul will experience neither love nor hate. Perhaps my Soul will not even be mine. Perhaps then, my Soul will just be.

disappear fear

My partner Ann, our friend Ellen, and I went to an afternoon concert at the Rainier Valley Cultural Center today. The pop/indie folk band disappear fear was playing, and we were three of the fifteen people dotted through the large auditorium. 

I had anticipated that the crowd would be small and mostly older, as the hip teenagers were just rising from their beds and like considerably more volume than I do, as my previous student's work with musicians at an organization called simply, "Volume", suggests. (After all, I can just turn my hearing aid if I want to music to be louder.) 

I have accepted that, nearing my 50th birthday, I am now considered one of the older crowd, but really I've always been part of the older crowd--even as a teenager. 

When I was leaving home for college, my younger sister Jennifer gave me a note that said, "I'll miss you if not your weird music around here." While Sister Jen, who was (and is) much more hip than I was (or am) listened to Van Halen and The Stones, I played and re-played albums by Simon and Garfunkel and Joan Baez. (We now intersect at Tom Petty.) 

Today, as I listened to the lead, Sonia, play her harmonica, I thought of the line, "Folk rock. I've lost my harmonica, Albert," from Paul Simon's "A Simple Desultory Phillipic (or How I was Robert McNamara'd into Submission)." 

Perhaps folk rock is no longer the sound that draws crowds, wearing tie-dyed peace signs and smoking pot, into open fields. Perhaps that hasn't happened since the sixties. It's too bad. The music is so good: lyrical and thought-provoking, harmonic and disruptive, like disappear fear's music today.

Though there was a small crowd, the musicians were talented. Four of them, the lead singer, guitarist, and harmonica player, Sonia (from Baltimore), Lauren on harmony (from Austin) Don on a second guitar (a singer-songwriter from Taos, New Mexico) and Katie on the box drum (from Devon, England); played beautifully together. 

It's true that the crowd was small, but I know that a small crowd is largely an indication of marketing and doesn't necessarily indicate a group's quality. 

When I was first teaching in a Dallas suburb, teaching friends and I sometimes went to a local bar to see "Blue Light Express," a band featuring two students from our school. Later our students would play at a slightly larger and lighter venue for a bluegrass band that called themselves The Dixie Chicks. Wednesday nights, my friend Rick and I would go to the Italian restaurant to have dinner and hear them play. When Emily, the younger sister in the group, was graduating, she told me that she thought the band would turn from bluegrass to country, and when I asked why she said that bluegrass didn't make money: country did. When the two sisters joined with a new lead singer, Natalie Maines, they wore old-school country flouncy dresses and sang in hot spots like the produce section of a grocery store. It was only when they hired a manager that they turned big and started selling out stadiums full of screaming teenagers. (And then they pissed off the country music establishment, and moved to rock before splitting up, but that's their story, not mine.)

Sometimes in Dallas I would go to an area called Deep Ellum, a dark neighborhood full of music and pierced and tattooed people wearing dark leather before that look was in vogue. One night I went to a stage where about six other people and I listened to Edie Brickell sing, "What I am is what I am. Are you what you are or what?"(The next year, she'd be selling out large concerts and then she'd marry Paul Simon.)

I've also listened with my partner Ann to our talented friends Pea and Ally playing and singing on our couch. That was one of my favorite concerts ever. As Dad said after Pea played and sang for our commitment ceremony, "I knew Pam (Pea) sang, but I didn't know she could really sing!"


So the fact that the crowd was small today didn't bother me, especially once the band started playing. I know that great music happens in small places. 

As we entered the auditorium, the items for sale made the group's politics clear: t-shirts with peace signs and GLBTQ triangles and so forth. The opening song, too, made a political statement: "My name is America. Most people think I'm rich, but I'm mostly poor."

Most of the music, though built on a progressive platform, wasn't political. It was just good. 

In the song, "Don't Let Go" about her dad, who seems to have died from something that gave him headaches (maybe her father had a brain tumor like I did), she sang, 
"When I was ten, he gave me a guitar.
I said, 'Dad, I'm gonna be a big star.'
...
Keep your heart in a song."

I wondered if she felt okay playing for our small crowd, something that I imagined a big star wouldn't do, but she and her group smiled and laughed and seemed to put their hearts into the music.

In another song, a cheerful song about depression, she sang:
If I'm gonna be blue, it's gotta be the perfect shade.
If I'm gonna be blue, it's gotta be custom made." 

As we left, we bought two of her cds: one called "No Bomb is Smart" that won multiple Grammy nominations and one called "Broken Film" of the group we heard today.

If you need a big crowd to think music is good, then I'm not sure disappear fear is for you (though I would guess that they get larger crowds at night at different venues). If, however, you just like good music, go hear them.  Not because they're famous. Because they're good.

My neurosurgeon once got me thinkin' about fame. When I was impressed that he's friends with the poet Wendell Berry, I told Dr. Rapport that my sister sometimes drops conversational morsels about famous folk she knows. 

She told me once, for example, that George Clooney thinks pigs make great pets. Susan Serandon and Tim Robbins live in her neighborhood. So does Martha Stewart (whose home is guarded in a way that makes me wonder if she still thinks she's in jail.) There's another actress that Sister Jen thinks is beautiful but spicy  I can't remember the actress's name, but you would have heard of her. (After all, I've heard of her, and I don't know hardly any famous pop stars.)

When I commented on this to my neurosurgeon, he said, "Tell her that fame is a chimera, like everything else." 

How great is it that my neurosurgeon would note that fame is a "chimera"? I wonder how many neurosurgeons use that word in addition to all of their medical vocabulary. He was the right guy to be messing around in my brain.

And then to make it a philosophical statement: "like everything else."

I'm still thinking about that one. 

Homecoming

Our church's sister community in Guarjila, El Salvador celebrates its 26th anniversary this week: on Oct. 12, 1987, after years of living in exile from their Salvadoran homes,  founding members returned to El Salvador to claim a large meadow between two high spots as their new community, a community that would be governed locally by the people, for the people, and of the people.

Guided by their spiritual leader, Jesuit priest Jon Cortina, the leaders who returned on this day committed to building dignified housing for each family before the community would build other buildings, like a church.

I first visited this community in the spring of 2000 as a member of our church's delegation. Guided by the Sister Parish organization, we went neither to build nor to teach, but to listen and to learn as we began to build relationships.

The homes in this community were simple, built of concrete blocks, with an outdoor pila where the water that ran a couple of times a week was stored for cooking, drinking, and bathing. (I hear things have changed, and there is now a lovely church and indoor plumbing in many of the homes.)

Ann and I loved the family who hosted us, Aparicio and Maria and their children and other relatives. We have so many memories from our days there: our first morning when we heard the piglet screaming so much that we feared they had butchered it (They hadn't: Ernesto had simply run it around the house three times so that it would forget where its mother was and wouldn't run away.); waking each morning to the children watching us, wanting Ann to do her tricks (put in her contacts and use her inhalers); sitting under the ledge as the season's first rain pounded on the tin roof and knocked mangoes to the ground (young Lupe running as fast as she could to collect the mangoes in her dress); talking with Aparicio about health care (he couldn't believe that there are people in the wealthy U.S. who didn't have health care and kept rephrasing his questions, thinking that my Spanish must have been wrong because surely the citizens of such a wealthy country would have health care.)

I remember a day with the community on the Sumpul River, the site of a massacre during the war but now a lovely place for a picnic, playing in the water, and sharing more stories. (I remember watching teenagers Graham, who spoke no Spanish, and Marvin, who spoke no English, as they sat on a boulder in the river talking together for hours. Tom, who is my age, and I marveled at them, and Tom said, "What do you suppose they are talking about for so long? They don't speak each others' languages!"

In 2004, I returned with a youth-focused delegation and was again amazed by the hospitality and by the stories I heard. On that delegation, I remember that wherever we went, small children would yell out for teenager Clare: "Clarita! Clarita!" As one boy jumped into her arms, she laughed over his shoulder and said to me, "I have no idea who this is."

In 2007, I was diagnosed with my first brain tumor, and I learned later that the community held a prayer vigil for me. (My chest still wells with gratitude when I think of that.)

I will not visit Guarjila again. My disabilities would make getting around this community, with its rough terrain and elevated latrines, too difficult. 

Though there have been gifts, incredible gifts, with these brain tumors, and I live in a state of gratitude, there have been losses, too, and with these losses a grieving for what is gone.

Though I will not go to Guarjila again, three times members of that community have come to visit us. Sixteen months ago, three members of the community, Rosaly, Maria Jesus, and Armando, came to visit, and Ann and I got to host a community nurse, Rosaly, in our home for a few days.

Rosaly is lovely, one of those people who is kind and generous in a way that transcends translation. Each morning, she would notice that Ann put out my pills for breakfast: "Los pastilles," she would say, recognizing the sweetness of this daily gesture.

At a church retreat, we wove a basket together, and I imagine that she has it still in her home.

We were sad to say good-bye to Armando, Maria Jesus, and Rosaly. I know that I may never see them again. Rosaly, who is raising two girls, may be as unlikely to travel here again as I am to travel there.

When they left, we gave them as a travelling home gift our church's birthright blessing, said at baptism:

Do you know what you are? You are a marvel. You are unique. In all the world, there is no other exactly like you. In all the millions of years there has never been another exactly like you. You are a child of God. And you will be a child of God forever. No one can take this birthright from you.

May you continue to grow into the fullness of life that is God’s intent for you. And may you always know that you are loved.

                                  A poem by Ernesto Cardenal,
                                 Adapted by Rev. Kathlyn James

¿Sabes lo que eres? Eres una maravilla. Tú eres única. En todo el mundo no ha habido otra exactamente igual. En todos los millones de años, nunca ha habido otra persona exactamente igual que ti. Tú eres una hija de Dios. Y serás una hija de Dios para siempre. Nadie puede quitarte la primogenitura.

Siga viviendo siempre en la plenitud de la vida que es la intención de Dios para ti. Y conozca siempre que eres amada de Dios.

Even as I grieve the abilities and people I have lost, I feel so much gratitude that they were in my life for a time. And that's all any of us have: a time.

Regreso al Hogar

Comunidad de la hermana de nuestra iglesia en Guarjila , El Salvador celebra su 26 aniversario esta semana : el 12 de octubre de 1987, después de años de vivir en el exilio de sus hogares salvadoreños durante la guerra civil e país , los miembros fundadores volvieron a El Salvador para reclamar una gran pradera entre dos puntos altos como su nueva comunidad , una comunidad que se rige a nivel local por el pueblo y para el pueblo y del pueblo.

Guiados por su líder espiritual, el sacerdote jesuita Jon Cortina , los líderes que volvieron en el día de hoy ha comprometido a construir una vivienda digna para cada familia ante la comunidad que construiría otros edificios , como una iglesia .

 Visité por primera vez a esta comunidad en la primavera de 2000 como miembro de la delegación de nuestra iglesia. Guiados por la organización Sister Parish, fuimos ni para construir ni para enseñar , sino para escuchar y aprender cuando empezamos a construir relaciones.Las casas de esta comunidad eran simples , construido de bloques de hormigón , con una pila al aire libre donde el agua que corrió un par de veces a la semana se almacenó para cocinar, beber y bañarse . ( He oído cosas han cambiado, y ahora hay una iglesia preciosa y agua corriente en muchas de las casas. )

Ann y yo nos encantó la familia que nos acogió , Aparicio y María y sus hijos y otros familiares. Tenemos tantos recuerdos de nuestros días allí : nuestra primera mañana cuando nos enteramos lechón gritar para que nos temíamos que habían matado él ( ellos no tuvieron : Ernesto se había limitado a correr alrededor de la casa tres veces para que se olvide de donde su madre y no huir ),. despertar cada mañana a los niños que nos miran , con ganas de Ann para hacer sus trucos ( poner en sus contactos y usar sus inhaladores ), sentado debajo de la cornisa como primera lluvia de la temporada golpeó la lata techo y mangos tiró al suelo (jóvenes Lupe corriendo tan rápido como pudo para recoger los mangos en su vestido ), hablar con Aparicio sobre el cuidado de la salud ( que no podía creer que hay gente en EE.UU. los ricos que no tenían cuidado de la salud y se mantiene reformular sus preguntas , pensando que mi español debe haber sido un error , porque seguramente los ciudadanos de un país tan rico tendrían cuidado de la salud . )Me acuerdo de un día con la comunidad en el río Sumpul , el sitio de una masacre durante la guerra , pero ahora es un lugar encantador para un picnic. Jugamos en el agua, y compartimos más historias . ( Recuerdo haber visto adolescentes Graham, que no hablaba español , y Marvin, que no hablaba Inglés , mientras estaban sentados en una roca en el río conversaban durante horas. Tom , que es mi edad, y me maravilló , y Tom dijo , " ¿Qué crees que están hablando durante tanto tiempo? que no hablan idiomas de los demás. "

En 2004 , regresé con una delegación dirigida a los jóvenes y de nuevo estaba asombrado por la hospitalidad y por las historias que escuché . En esa delegación , recuerdo que donde quiera que íbamos , los niños pequeños podrían gritar para el adolescente Clare : "¡ Clarita Clarita " Como un muchacho saltó a sus brazos , ella se echó a reír por encima del hombro y me dijo : "No tengo ni idea de quién es. "

En 2007 , me diagnosticaron mi primer tumor cerebral, y me enteré después de que la comunidad celebró una vigilia de oración por mí. ( Mi pecho pozos aún con gratitud cuando pienso en eso. )
 No voy a visitar Guarjila nuevo. Mi discapacidad harían moverse por esta comunidad , con su terreno áspero y letrinas elevadas, demasiado difícil.Aunque ha habido regalos , regalos increíbles, con estos tumores cerebrales , y vivir en un estado de gratitud , ha habido pérdidas , y con estas pérdidas de un duelo de lo que se ha ido.Aunque no voy a ir a Guarjila nuevo, tres veces los miembros de esa comunidad han venido a visitar Seattle. Hace dieciséis meses , tres miembros de la comunidad , Rosaly , María Jesús, y Armando , vinieron a visitar, y Ann y yo llegamos a organizar una enfermera de la comunidad , Rosaly , en nuestra casa por unos días .

Rosaly es preciosa , una de esas personas que es amable y generoso de una manera que trasciende la traducción. Cada mañana, ella se daría cuenta de que Ann sacó mis pastillas para el desayuno : " Los pastillos ", decía , reconociendo la dulzura de este gesto cotidiano .
 En un retiro de la iglesia , que tejió una canasta juntos, y me imagino que ella tiene todavía en su casa.

 Estábamos muy tristes de decir adiós a Armando , María Jesús, y Rosaly . Sé que nunca podré volver a verlos.  Rosaly , quien está criando dos hijas , puede ser tan difícil viajar aquí de nuevo ya que soy de viajar allí.

 Cuando se fueron, les dimos como una casa de viajar regalo bendición de la primogenitura de nuestra iglesia , dijo en el bautismo :

 ¿ Sabes Lo Que eres? Eres Una maravilla . Tu eres Única . En Todo el Mundo no ha habido Otra exactamente Igual. In Todos Los Millones de Jahr , Nunca ha habido Otra persona exactamente Igual Que ti . Tu Eres Una hija de Dios . Y serás Una hija de Dios Para Siempre . Nadie Florerias quitarte la primogenitura .Siga Viviendo Siempre en la Plenitud de la vida Que es la Intención de Dios para ti . Y conosca Siempre que eres amada de Dios .
                                 Un poema de Ernesto Cardenal,
                                 Adaptado por Rev. Kathlyn James

 A pesar de que me duele la capacidad y la gente que he perdido , siento tanta gratitud que estaban en mi vida por un tiempo. Y eso es todo lo que cualquiera de nosotros tenemos : a tiempo.

Gracias a Google Translate para traducir el blog y para mi amigo Kiki Cantón y sus estudiantes para transating la bendición.

Skinny Legs and All

When I was in high school, I was 5'8"and 102 pounds. I remember those numbers because it seemed like I weighed 102 for ages. While my friends were already dieting, I could not gain weight. I was not sveltely thin: I was awkwardly skinny. If you watch the WNBA, the women's professional basketball league in the U.S.--You DO watch the WNBA, don't you?--you've seen DeWanna Bonner play for the Phoenix, Mercury, and when you noticed her legs, you busted out, "Wow! Those legs are like toothpicks! How does she stand up? Even when the spotlight's on her, she doesn't cast a shadow...." I know she gets these comments because I got them, too.

I remember going to the library one day in high school (I was, as I still am, a geek, so I spent a lot of time in the library.) As I entered, a table of boys, who had been talking, silently watched me go by. Finally, one spoke to the others, "That girl ain't got no butt!" He intended no insult: he was merely stating a surprising truth. 

I got no sympathy from all the girls on diets. At camp one summer, I tried to gain weight while my cabin mates tried to lose it. Each day, those on diets passed me their desserts at the dinner table, and I dutifully ate them up. Once, I was so hungry that I ate 14 bright red hotdogs in their buns with yellow mustard. I don't even remember being full after that, but at least I wasn't hungry anymore. 

The weight-gain scheme didn't work. I was a camp geek just as during the school year I was a book geek. Each day at camp, I ran from activity to activity: with waterskiing and sailing, basketball and riflery, there was so much to do. As the camp director encouraged us to do, I packed my days full. When there was a "jeep ride," popular with most campers because we got driven through muddy woods going fast and then stopped for an ice-cream treat, I didn't run to the jeeps like the others. I ran to the waterskiing line which would now be much shorter and spent my hours waterskiing while my dieting cabin mates ate ice-cream.

My cabin mates were not so geekily enthusiastic as I was: some of them were even "cabin squatters," a bad word at camp for people who hid in cabins eating from other people's care packages. Each Sunday when we weighted in at the infirmary, I had lost two pounds and each of them had gained them. 

Though I was athletic, being so skinny was not good for my basketball. (DeWanna Bonner must be super-strong.) I got pushed around under the boards. My coach would yell at me, "Edwards! Stick your butt out!" and I would yell back, "Coach, I ain't got no butt!" (I would also learn decades later that I had had a brain tumor that may explain why I was always unbalanced.)

When we played a weak team, our coach would tell us before-hand, "We gon' kill a gnat with a sledgehammah." Unfortunately, sledgehammers aren't especially effective at gnat-killing, and sometimes we got beat. At one game when I was a senior and still spending most of my time on the bench, the coach didn't play me until the end of a game against gnats, though it was clear to me that I could have helped the team but wouldn't get a chance, and our team lost unnecessarily. 

The next day, instead of dressing for practice, I walked into the gym and said, "Coach, can I speak to you in private?" I held my clean and folded uniforms in my hand. "Oh no!" he said and rolled his eyes. I had prepared a speech but my throat was too tight to talk, and I didn't want to cry. "I'm done with these," I said, handing him my uniforms. I walked out as he sat there.

I might have quit the team long before, but I didn't see myself as a quitter. I lived by the mantra I often heard, "Winners never quit, and quitters never win." I learned that day that stopping something that's painful and has no promise of getting better can be more courageous (and life-giving) than persevering. I learned to start thinking about when perseverance made sense for joy in my life and when it did not. 

This lesson was both important and painful when I left a marriage that didn't promise much joy, and I came out as a lesbian. Though that leaving and coming out were almost unbearably painful at the time, my life has been more joyful because I had the courage to choose my truth over the fear of what quitting might say about who I was. 

This lesson resonated again last night when a man my age came to talk about Death with Dignity (www.CompassionWA.org) with our class called, "Caring for Persons with Life-Limiting Illness." Death with Dignity, a legislative act in Washington state makes it legal for people who are suffering and terminally ill to decide to end their lives. 

Last night, the executive director of Compassion & Choices, an organization in Washington State that helps support people through this process told his own painful story: in 1994, his partner was dying of AIDS and was in a lot of pain and wanted help ending his life. The state's Death with Dignity act was not yet imagined, and so this man's partner died a long and painful death. As he told the story, a story he must have told many times, his face contorted in grief, and he began to cry. "This is unresolved grief from watching someone die so painfully and not being able to help," he told us. Most of us were crying at this point, too.

He was talking about the importance of a person's right to say, "enough" to all of the life-saving technologies we have. For health care providers, he distinguished between "quitting" on a patient and respecting a patient's self-determination and dignity. For patients, he distinguished between a patient quitting and a patient dying with dignity.

Already a bit exhausted from this presentation, our class then watched a film called, The Suicide Tourist, a documentary about a man suffering with a terminal illness who left the United States and went to ... was it Sweden ... to get help ending his life in a dignified way. As the man in the film prepared to board the plane, he said to his interviewer, "My next adventure will be the adventure of dying."

This man also told the parable of a man running from a tiger who came to a cliff and, having nowhere to go, scrambled down to a bush, where he hung over the chasm below, clinging to the branch for his life. He looked down in the chasm and saw a tiger below. A tiger above and a tiger below: each waiting for him. What did he do? He saw a strawberry plant with one perfect strawberry close by, plucked the berry, and ate it. "That was delicious," he said. 

And so perhaps I'm learning from my own brush with death and from the many people I'm interviewing who have experienced life-changing health conditions (some of whom will almost certainly die from their condition and two of whom already have). Perhaps I'm learning what Walt Whitman meant in Leaves of Grass when he wrote about dying people:

What do you think has become of the young and old men?
What do you think has become of the women and children?

They are alive and well somewhere;
The smallest sprout shows there is really no death,
And if ever there was it led forward life, and does not wait at the end to arrest it,
And cease the moment life appears.

All goes onward and outward....and nothing collapses,
And to die is different than anyone supposed--and luckier. 

I remember reading this passage after my maternal grandfather had passed. I remember what peace it brought me at the time.

In yoga, too, I have been learning about death. I have been practicing for it. At the end of each of the many yoga classes I've taken over the past twenty  years, we do a pose that in Sanskrit is called Shivasana, meaning "Corpse Pose," in English. For a long time, my partner Ann and I called this "yoga nap," a restful time at the end of a day when were were present and not working: we were just being. This being as we practice for not-being is always a relief, a gift, as full of life as anything I know (except maybe a hillside of avalanche lilies in bloom). As Zen says, "If you die before you die, then when you die you won't die" (quoted in article "On Being a Support Person" in The Journal of Transpersonal Psychology, 1988, vol. 20, No. 2, page 158).

My own experiences near death have made me more conscious of my mortality than I had previously been. Though death was a possible outcome from my surgery ("It is brain surgery, after all," my neurosurgeon said to me), and death was likely without treatment, I did not think it was likely that I would die. I knew it was a possibility I had to consider, partly because I filled out so many forms about giving away my organs in the case of my death, identifying the person to make decisions in my stead were I unable to make those decisions, saying that I didn't want the use of excessive force, and so forth. (And then there was the car accident when there was no time for such forms, just a rush to cut me out of the car and whiz me to the local trauma center.)

My experiences and the experiences of others at the precipice teach me about dying and about living. I want to live truly and intensely. I want my life to be a gift. I want to savor that delicious strawberry. 

Keeping Confidences

When I was undergoing radiation for my second brain tumor a few years ago, I lost a lot of my hair, and I was impressed by how much colder I was without all of my hair. (I didn't have to do chemo, which is when people lose all of their hair, so I still had some, but the swath in radiation's path across the back of my head was destroyed.)

I talked with a friend, a man who had been balding for some time, and told him that I now sympathized with how cold he must be. We talked and laughed about it a bit, and then he said, "Don't write about this in your blog."

I did write about being cold, but I kept my friend's confidence: I wrote my story but not his. That's always my goal in this blog, to write my own story and to respect the stories of others as their stories (and not mine) to tell. 

I took a writing class from a memoirist who disagreed with this approach. If I understood her correctly, she said that memoirists have to be willing to tell everything, and that the story must come before any consideration of others' feelings. I've read enough memoirs about enough misery to believe that other writers must think that, too. 

Some of them, like Cheryl Strayed's Wild, are excellent, but I find myself wondering what her children think when they read her story. After all, I feel that my parents have been honest with me about their lives, but I feel that there are details that I don't need to know. With other memoirs, I sometimes wonder how the people featured in the memoir feel about being there for all to see. 

For me, the story doesn't come before relationships; for me, relationships come before storytelling. Besides, I can tell my truth without telling every detail of my life, and certainly without exposing others' lives. This is much like one of the precepts of being a lesbian--you can out yourself but you should not out someone else--so I've had some practice. 

The hard thing is that my story is so often interwoven with others' stories that sometimes it's hard for me to separate my story from others', but I think I'm learning. When I'm unsure of how to unwind the stories, I can leave that part of my story untold. It will emerge elsewhere. 

This philosophy of attending to our own lives rather than trying to write others' lives is at the core of Alcoholics Anonymous (AA) and Al-Anon (for friends and family of alcoholics). I have attended meetings of both and regularly (well, for three weeks now) attend an Al-Anon group. There I hear amazing stories of struggle and of survival and healing, but those aren't my stories to share.

I can share with you a tidbit from today's speaker meeting, a meeting where someone shares an extended version of their own story: "Good judgment comes from experience, and experience comes from poor judgment." That aphorism applies broadly, it seems to me: perhaps universally. 

At the heart of both programs are twelve principles, twelve traditions, and twelve steps. An unspoken foundation is, it seems to me, that we heal in telling our stories and in hearing others' stories.

This belief in the healing power of stories is the basis of the book I'm currently working on: Sharing Our Stories of Life-Changing Health Conditions. For the book, I'm interviewing people with life-changing health conditions and those in our lives. 

Some people ask me how I find people to interview. It's easy. People everywhere indicate that they've had a serious health condition, and I often tell them about the project and ask if they'd like to be involved. Mostly, people say yes and mostly they follow through. Quite a few have commented on how important telling and hearing stories has been for them, and they commit themselves to telling their whole truth. The experience of listening to their words and their spirits and giving shape to their stories is a powerful kind of witnessing for me. 

Thus far, I've completed 37 interviews, and each one leaves me breathless. Really. As Ann and I were coming home from this morning's meeting, she said, "I'll bet everyone has an amazing story to tell from our lives if we'll only just listen."

Yes. I think she's right. And what a gift is to listen.