It’s Just a Story
Years ago, when I was a good little wife and devoted young mother and dedicated church goer, my baby was diagnosed with a brain tumor. He was given 25 to 40 % chance of survival after five years. He is either 100% alive or 100% dead, I thought. Today he is 100% alive and that is all that matters. So we went on, one day at a time, through two years of intensive chemotherapy, two tumor resections, four shunt placements and revisions, one episode of meningitis, four months on a feeding tube and weeks of physical therapy, speech therapy and occupational therapy. At the end of treatment, during his last blood transfusion, my son went into anaphyalctic shock and stopped breathing. For the first time, I had to step away, and as they revived my angelic three year old boy, I had my first real freak out.
When his treatment ended, I, the tiger mother disengaged from crisis mode and went into free fall. I’d have panic attacks on a fairly regular basis, unpredictably, in the parking lot when I attempted to do grocery shopping, running an errand, or on the way to a follow up doctor’s appointment.
Antidepressants made me break out in hives, so I turned to non medicinal interventions. Art revived me, I began to draw, write and paint. I went for regular massages. I took time to heal. I became a massage therapist specializing in support for life altering events. Then I started giving presentations at the local hospital. Presentations about what it felt like to be the desperate mom in a hospital room full of residents, with a sick baby, with all the uncertainty of the world hanging over your head.
I’m the mother of a brain tumor survivor, I’d say. I’d lead with my wound. I did that for a while. I told my story over and over. Sometimes with pictures. Sometimes with tears. Looking at it this way, and looking at it that way.
There is much to be said about telling your story. About being heard. It moves healing forward, that of your own and that of others. I believe that it’s a kind of magic.
And not to be disrespectful of my own process, but in a way, it’s just a story. At a point I got tired of identifying myself as the mom of a cancer survivor. It’s heavy. It’s hard. It got old for me. Thank god. Thank goddess. And now that he has been well for 15 years, why wouldn’t I prefer to focus on the wellness, on the lives of his brother and sister, on the mundane good stuff, like the fact that he just passed his drivers’ license test?
Who am I, then? It’s not the wound or wounds that define me, even as they teach me. I feel these days that I am in a kind of dance. A dance with the things that have hurt me, the things that bring me to bliss, what delights me, what devastates me, what angers and annoys, they are weather, I am earth. Like my friend, Elaine sometimes says, it’s just a story. I’m grateful for the stories, but I don’t wish to be lost in them.
We tell the story as long and as hard as we need to. The heart knows when to let go, when it’s okay to turn the pages and move ahead. Until then, keep on telling the story. If it serves you, it will serve others too.
Here are a few good reads on Narrative Medicine and the power of the story. Funny how sometimes the most unbelievable stories are the ones from true life.
Wisdom of the Psyche: Depth Psychology After Neuroscience by Ginette Paris, A neuroscientist suffers a devastating traumatic brain injury and finds her way back to health.
A Grief Observed, by C.S. Lewis The raw and powerful journals of the author’s grief process in the weeks following the death of his wife.
Paula, by Isabelle Allende The author’s tribute to the life of her daughter who passed away at the age of 28.
The Glass Castle by Jeanette Walls Candid memoir of a woman who grew up with parents who lived a nomadic, unconventional life and the impact of her family background. Told with brutal honesty, warm affection and surprising humor.
The Year of Magical Thinking by Joan Didion Story of the author’s grief process during the year following the sudden death of her beloved husband and partner.
Rescuing Patty Hearst, by Virginia Holman Relates the story of how the author and her sister lived under a kind of house arrest fueled by the delusions of their schizophrenic mother. A story of love and resilience in the face of severe mental illness.