"For me a brain tumor and its treatments are not a pause in the adventure of life, but instead a part of the adventure of life." Mary has survived big hair, a brain tumor, coming out, distressed bowel syndrome, hallucinations, radiation, and a car wreck. Here Mary takes us from public transportation horrors to the joys of sharing life with you. Though you probably won't want to have a brain tumor; you will wish that you could see the world through Mary's eyes. Sister Jen
June 16, 2017
Grandma and Grandpa
Thursday, December 25, 2014
Sunday night, we went to hear Cute Cousin Michael (CCM) sing in the Seattle Men's Chorus: their holiday concert was "Our Gay Apparel." The concerts have good choral music with campy humor, always some skit with men in drag and another with men wearing tights that don't hide any bumps. At Christmas, there's the ugly Christmas sweater song, and some of the guys display doozies. It's a feel good concert, and we always feel especially good to see CCM having fun, participating in this communal event.
The choir sang a mix of old Christmas carols like "God Rest Ye Merry Gentlemen" and newer songs, like the one this choir and others commissioned: "New Year's Carol" with music by Ola Gjeilo and lyrics by Charles Anthony Silvestri. The line “Soon will the frost-bite give way to the flower. Under the snow waits the promise of May” especially resonated with me. I find myself appreciating winter's hibernation more this year than in others, though this year I'm not focusing so much on the spring that will come as I am on the gifts of the dark season.
The flu has slowed me down this holiday season, even more than my brain tumors and their treatments have slowed me down for the rest of my life. Though I wouldn't have chosen to have the flu or the tumors, there's a gift to this slowing, a chance to experience a moment rather than race through it, time to ponder and appreciate. Time to meditate. Time to sleep.
I love a good sleep: burrowing in the down comforter, drifting into the dream world, my body and mind healing as I rest. I like the warmth of this cocoon. I like lying on my stomach and stretching my long body so that my toes fold over the end of the mattress. I like the fact that the world continues to turn while I lie there.
The night's dark can seem scary: ghosts haunting those strange warm spots as I walk in the night's cool air, the strange growls of nocturnal animals in the bushes and the spookiness of shadows around the corner. But night's dark can feel comforting, too: the world's reminder that rest is part of my calling just as the work of day is.
I'm generally drawn to summer's warmth more than winter's cold, but this year I find myself staying in the season's dark rather than yearning for summer. Though Keats's ode "To Autumn" is about the fall, it's at its essence about being in the moments of quiet and loss, so this winter I find myself quoting from him:
Where are the songs of Spring? Ay, where are they?
Think not of them, thou hast thy music too,--
I connect, too, with Mary Oliver among the trees that say to her:
"You too have come
into the world to do this, to go easy, to be filled
with light, and to shine."
Our friends Rita and Linda invited us to a winter solstice party with another poem that calls me to rest in winter's cloak. Kaaren Whitney closes with this lovely reminder:
Beyond the entrance we call ‘Winter’
lies a quiet space, empty
but for a single candle
whose light increases
as dreams and hopes
fuel its incandescence.
Step softly within
where the calm communion
of sitting with silence,
shining with light
brings long sought oneness.
Since my brain tumors I have been learning about winter's quiet, soft spaces. I learn especially from my friend Lori who teaches me to listen in the silence. I have not been able to see Lori as much as I like to this fall because I have gotten myself too busy and because the long trip to her home requires that I leave space that I have not been leaving. I need to get back to her.
Lori was diagnosed with cerebral palsy as an infant, and the degenerative disease now makes it impossible for her to have muscle control, so she uses a wheelchair. She also cannot speak, so when my friend Pea and I visit, we ask her binary questions ("Is it an elephant?" gesturing with the right hand, "or a petunia?" gesturing with the left hand. She moves her eyeballs right if it's an elephant, left if it's a petunia, and up if it's neither. I'm not sure what it means when she moves them back and forth: either it's both an elephant and a petunia or she's giving us a hard time.)
These conversations are slow. This past summer when we visited, we formed a little triangle in Lori's room, and she decided among many choices that she'd like to tell us about herself as an artist. Two of her paintings hung on the wall (She paints holding the paintbrush in her mouth), and through a long series of binary questions she told us that the darker of the two is about a time when she was in elementary school and a boy made fun of her for her disabilities. The other painting, with more yellows, greens and blues, is about the hope she feels when she's in nature.
Since my brain tumors and their disabilities, I move slowly, and I have been thinking about moving slowly lately, about the ways that it has changed not only the ways that I move in the world but also the ways that I see and live in the world.
Sometimes, it's frustrating to move so slowly. When the bus that I hoped to catch whooshes by and I'm still at the curb, I wish I could run, but instead I will wait in the cold and the rain for the next bus. When I'm crossing the street and the white man changes to a red hand while I'm still in the middle of the cross walk, I look anxiously to my right and left and wish I could move more quickly.
Mostly, however, moving slowly is a blessing. Before my tumors, I would dash from place to place trying to get as many activities into a day as possible. I was unlikely to stop to say hello if you were walking by. I was unlikely to notice the particular curve of a cherry bud. I was unlikely to notice the gift of my breath.
This fall I took a meditation class called "Mindfulness Based Stress Reduction," a class for people with serious health issues, and I've been practicing each day. This is a different kind of practice than soccer, volleyball and basketball practices when I was growing up. It's a practice in not doing anything, in allowing my mind to rest. It's hard.
Yesterday for the first time, my mind was actually still for a few moments, not busying itself with memories or imaginings, not making plans or narrating my experiences. For a few moments, it just was. And then I noticed that I wasn't thinking, and the words started again. So my mind ran about like a squirrel again, but for those moments it had been still. I had been resting in a way I never have before. Previous Christmases (is that the plural of Christmas?), I have identified with the wise men in the Jesus birth story. I have imagined myself like these men, taking a long journey guided by a star that seems clear to me in its direction though I do not know its destination. I have imagined myself seeing this baby, this miracle, and then taking another long journey home, a journey where I mull over the meanings of the star and the child, a journey where my mind works hard to understand what I have experienced. This Christmas, I'm identifying with the cow in the stable. This miracle just showed up in my home and my only job is to witness. I will not tell the story. I will not be thinking about the ways this birth will change the world. I will just be. Moo.