April 2018

Monday, July 22, 2013

Telling Stories

This morning, my yoga teacher Dawn started class with a dharma talk as she always does. In dharma talks, the Samarya Center teachers connect stories from their lives to a guide for living in the first and second limbs of yoga.

This month's concept is svadhyaya, a Sanscrit word that means study of self and of religious texts. An English major in college and a Language Arts teacher for decades, I'm pretty good with studying religious texts. but because I can be remarkably unaware of myself, I engage especially with this niyama and with my teachers' stories.

Dawn's stories often involve her teenage children. I love these stories because I taught teenagers for so many years and loved to witness their ways of learning about themselves and their world and because Dawn is so earnest in her searching and so humble about her frustrations. 

In today's story, Dawn talked about wanting her son to play outside while he wanted to spend hours on the computer. She said, "I realize we are both telling ourselves stories that may have some truth in them..." and then she couldn't help but continue, "but I'm pretty sure most people would agree that my story is right."

Bless her heart. Like the rest of us, she is trying to hear her own story, but it's hard to listen without letting out egos, our insecurities...our humanness get in the way.

I love stories, my own and others'. Not because they tell me about truth in the world but because they tell of the struggle to find truth in the world--and in ourselves. 

I am writing a book with the working title, Sharing Our Stories. It is a book of interviews with people who have experienced life-changing health conditions and those in our lives.

 Hearing others' stories helps me understand that I am not alone in this quest to make sense of my life. My experience with a serious health condition, in my case brain tumors, is not unique, and others understand my perspective. These are my peeps.

 Last fall, I interviewed a Salvadoran doctor who had experienced Guillain BarrĂ©, an auto immune disease.  In this disease, one’s immune system is triggered by one of many things, such as a virus, immunizations, or bacteria. The immune system makes a mistake and starts to attack the person’s own peripheral nerves.  The illness starts in the toes or fingers, usually the toes, and moves up, including muscles in the chest so the person can’t breathe. Because the nerves aren’t working, the muscles don’t work, and if it’s not treated immediately, a person’s lungs can stop working and the person can die. With treatment, a person can recover almost completely. This doctor said that after a year he was 99% cured.

 In our interview, he said, “I suspect, Mary, that though you’re interviewing me, you have gained new avenues of exploration in your own life. A patient can become a victim in the face of adversity. I suppose that this whole process for you is about finding meaning in your own life.

“Like Victor Frankl, a concentration camp survivor and psychiatrist, who wrote Man’s Search for Meaning, we can’t avoid suffering, but we can find or create some meaning to survive it and even thrive.”
I think the good doctor’s partly right here. Only partly because I believe my life has meaning without me looking for it. I’m amazed by that meaning, and I want to celebrate with others.

I recently heard the story of a man going to a guru to ask what the meaning of life is. The guru replied, "Life. Life is the meaning of life." I get that. 

The doctor’s question of why I write interests me more than his answer. Last year, in an interview with a new friend who has experienced chronic fatigue related to Fibro Myalgia, my friend asked, “Why do you write?”
Her question got me to thinking again.

At a writers’ retreat two  years ago, a table of women explored a different question together: how do you stay diligent, writing regularly? These women seemed to be distracted from their writing, and writing for them was to some extent a chore that required due diligence. I told them that my struggle is to make sure I live out the other facets of my life: my struggle is, at times, to not write. (This is not a split infinitive, so put away your red pen. Not writing is a verb, an action verb, just as writing is.)
I learned at that lunch that my answer did not make me popular with the crowd, so I now keep this struggle to myself when I'm with other writers.

Still, writing for me is a kind of release and relief. It comes easily, like water from a tap. I feel compelled to write as I would feel compelled to breathe if I were drowning in water. Writing, for me, is like breathing under water.

Why? I think it’s because I have something to say and something to learn. I’m noticing a recurring theme in my writing: life after disease is not tragic, though many people seem to think it is. I am not heroic because I aim to live a full life with my disabilities and my awareness that another tumor could grow at any time. Some people think I’m inspiring, and I like for people to think I’m inspiring, but the truth is that I’m not exceptional.

That is what I have to say. What do I have to learn? I'm not sure, but I know it's really important. 
For my book, I’ve been interviewing others with life-changing health conditions and those in our lives. I want to publish a book of our stories, a book that I have wanted to read since I began healing from neurosurgery, and I was beginning to see that my life would change. I don’t really want advice. I want to hear people’s stories, so I am writing a book of stories.

As I interview people with life-changing health conditions, with breast cancer, diabetes, addictions, mental illnesses and so forth, I see that my peeps live meaningful lives.

As my neighbor who has stage IV metastatic breast cancer said, “The treatments have been hell, but I’ve found out who my friends are and how much community I have. So there have been gifts. And I’ve found out that I can get through anything.

“It makes me sad when I meet people who can’t see the gifts. I wish I could have gotten here without this, but where I am and who I am are good because of everything I’ve learned from the experience of having cancer.”

Those of us whose lives have been changed because of our health, live meaningful lives. That’s what I want anyone who’s diagnosed to know. That’s what I want everyone else to know.

Why do I want everyone to know this? Because most of us--facing health conditions or not--experience something we didn’t plan for as children, and though our paths change, we can live fully. In fact, perhaps many of us need  to veer from the journeys we had planned in order to live fully.

I want everyone to know the hope that I’m experiencing as my life keeps veering from my planned paths. I don’t want people to fear their lives unfolding. I want my writing to inspire hope. For me and everyone else. Maybe that’s why I write.


  1. Hi #3, I fear my life unfolding!! But I really enjoy your writing. (Also great to see the Puerto Escondido picture: seeing THOSE people in THAT spot gave me a jolt, in a good way.)#11

  2. And now these three remain: faith hope and love - and the greatest of these according to my boy at 1 Corinthians is love, but I think it is hope. I had lost all hope not too long ago and I can't think of a worse feeling. You inspire hope. LBM


Please comment: I'd love to hear your thoughts!