You Who Are In My Stories
Autumn in Dixon, New Mexico
The land and the places where I have lived have shaped me. It serves as elder and friend. I walk in its grace, feel its solace and hear the stories it tells me.
For many years my long-loved friend lived in Dixon, New Mexico. His door was always open to me. The land where he made his home by the river is an ongoing character in my life.
My friend has finished his walk on earth and has crossed over to the other side. From flesh and blood to souls and songs.
I feel the wind spilling through the red and yellow leaves, and the fine dust from this red earth on my skin, as I walk the good land of the home I carry within.
Photos © Santa Fe Daily Photo. All rights reserved. Reprinted with permission.
Voices Confronting Pediatric Brain Tumors, Johns Hopkins University Press
Visit www.nibjournal.org/news/voices.html to download this open access collection.
Following the release of the Voices publication it was also a great honor and sincere privilege to be invited to sit on a panel, speak and read my story at the ASBH American Society of Bioethics and Humanities Conference.
Since I've been writing and speaking in other genres and venues, and away from the pediatric brain tumor world for a number of years, I felt like the fairy godmothers must have tapped me with a magic wand, leaving me eloquent and able to speak on a tender topic far beyond my usual ability. I’m sure this must be because my fellow panelist, a beautiful and articulate young woman who is a pediatric brain tumor survivor, spoke and rode on the wings of grace and presented a paper that was far beyond excellent.
I am deeply appreciative for our outstandingly good audience, and a deep bow, many thanks, and grateful acknowledgements to the editors, to my fellow panelists, to ASBH, and Johns Hopkins University Press.
Rejecting cancer language in terms of winning, or losing the Battle
“Why do you suppose when a person dies from cancer they say he lost the battle?” My then seven year old son asked. His face was pinched with confusion. I blinked in surprise.
“Don’t worry Mom, I know dying is not about losing.” And with the zeal of a kid determined to restore order to the universe he announced, “Heaven is filled with winners.”Courage, like love, requires hope to flourish. My son found his way through the stages as they came up. Having a positive attitude was important to him. As ill as he was, he gave the impression he’d outlive all of us. But suddenly his condition worsened.
Following my son's death I received stacks of cards I treasured from earnest friends. Their sweet messages almost restored my courage, yet nearly all contained the lines, "We are so sorry your son lost the fight."
Every day ordinary people are called upon to do extraordinary things, like finding pockets of happiness, reaching deep, loving wide and living a good life in the midst of a cancer diagnosis—even when sometimes it appears life is coming to a full circle closure.
Perhaps not cancer, yet each one of us will die one day.
What I know for sure is my son and dozens of others I’ve loved who have lived long and short lives with cancer have proved we must challenge and reject cancer language and cliches that define life and death in terms of winning, or losing the battle.
First published in Candlelighters: American Childhood Cancer Foundation
Three Sections from MY LIFE
A friend once had a cabin perched on a bluff overlooking the lake, surrounded by gigantic pines, and now fireweed and purple-red flowers dotted the level earthen floor, in a place where a forest once stood. My son Jay, a pole star of my life, had passed. I knew I would never get over it. Nor would I ever be the same. And I would not give up or given in to societies mistaken notion of getting over grief. I’d find a way to learn to live with it and not allow it to hold me back.
I walked, circling the crater, and saw wild violets blooming. The mountain had been scattered and sundered into bits, and she survived. I swallow a clotty grief deep inside my throat. A grief so wide it gives me laryngitis. Bold and enthusiastic thoughts of my son Jay filled me.
I shuffled out into the empty field of my mind to find enough words to make it through another winter of writing. My life has changed into something I didn’t want, and I began gathering the pieces that were left of me, coaxing them back into growth, and starting again, but like the mountain I’d lost all of my big trees.
I felt myself a part of the mountain, with hills catching the sunset through a furious wind, dust devils kicking up dirt. All my senses became alive, out on the edge. I imagined fireweed blooming on the burned over land in my heart with tiny purple petals, and it was a beginning.
When a Child Dies: Living with Loss, Healing with Hope
Today I am every age I ever was
Today I am every age I ever was. I am eleven riding the waves on my raft. I am 14 and 17 on my friend's surfboard, on my stomach, slicing through the surf. I am 35 swimming with my kids, with our Newfoundland dog. We hold onto her collar and she tows us to shore. And I am in my 70s now, swimming in the ocean with my grandchildren, what a wonderful day I think.
Writing, Reading and Living: Essays, Stories, and the Spaces Between
- Books With Indigenous Themes (11)
- California Indians (3)
- Living Loving and Dying (8)
- Memoir and Migration (1)
- Moderately Minimal (4)
- Race Ethnicity Place and Belonging (4)
- Stories With Indigenous Themes (12)