(This is the first in a series of essays about thinking creatively about patient storytelling).
Let’s think outside the rectangular box that makes up a podium. There are many other ways for patients to share their wisdom beyond standing behind a podium or sitting around a boardroom table.
I spoke in pediatric health settings about my experience as a mom of a child with Down syndrome for over a decade before I got breast cancer. I can say this as someone who has shared her stories at meetings, conferences and Grand Rounds: I’ve been doing this for years and I am scared, intimidated and nervous every single time.
When I became a cancer patient, I could not even bear to speak out loud about my experience for a very long time after I was diagnosed, never mind stand before an audience and hold a microphone.
A few months after my treatment was done, I was asked to present at a local Patient Experience Conference. I was flattered and accepted, a bit too eagerly. A few weeks later, I withdrew my name from the conference.
I had never pulled out of a conference before. There were two very good reasons for me to drop out. I first hesitated when the organizers told me that a committee had to approve my slides. Approve my slides? If you are a patient and asked to share your story and your Spidey-sense starts tingling, I encourage you to say NO, no matter how obliged you might feel. My colleague Isabel Jordan taught me to Be Picky. Be picky. You are worth it.
I also realized that I was still in the midst of the rage-stage of my post-cancer crap. Speaking publicly to the very people who caused me emotional harm during my treatment was probably not a good idea for anybody – especially me. I had many months of mental health therapy to go through to process my medical PTSD before I was ready to open my mouth and utter the words breast cancer.
I ended up first speaking about my cancer at a safe place, very far away, in Melbourne Australia at The Gathering of Kindness, a full two and a half years after I was diagnosed.
Let us consider the many other ways for patients to share their wisdom, beyond formal corporate settings.
All along, I was able to peck away at my laptop and write about my cancer - as evidenced by my frequently updated blog. This got me in trouble with extended family members and the cancer hospital, who seemed to be embarrassed with my honesty, but I kept writing anyhow. As Anne Lamott says:
If people wanted you to write warmly about them, they should have behaved better.
I also kept a journal that I dubbed Grace Period, scribbled notes in the little Moleskine notebooks I carried around with me on my long walks and texted myself scraps of ideas. Documenting what was happening to me became the start of my healing from my traumatic cancer experiences.
I dabbled in poetry when I stumbled upon a poetry class at our local arts centre. I liked the stripped-down nature of poetry, which helped me get to the point more quickly than my long, rambling journal entries. If you don’t consider yourself a writer, perhaps you are a poet instead?
My favourite poem of all time is this beauty by Raymond Carver, written when he was dying from lung cancer and nearing the end of his life:
With cameras on our phones, photography is an easily accessible way to tell our stories. There are many examples of disability and health stories told through photography on Instagram, including Katie Jameson, who documents her life as a mother of a young girl with Down syndrome. Danielle Doby is a high profile author who has breast cancer and documents her patient experiences through photographs too.
When I had radiation, I took pictures over the 20 days I was in treatment. I wrote about these photos in my book, in a chapter called A Collage of Hope. I tried to share my pictures with the cancer hospital, but here’s what happened:
Wouldn’t it be nice to have patient photos on the walls? silly me thought. I asked this question to the patient experience person. Here is her response:
“We no longer have the ability at the cancer hospital to share individual patient stories…as the policy at the hospital restricts us from privileging one story over another.”
I sat on that response for a long time and never responded. Her answer was no, no, no. After I read it, I felt shame flood my face for even asking. If a patient experience person can’t be kind, or invite ideas from patients – well, the whole organization is hopeless.
I did not give up on those precious photos, which were important to me because they represented a terrible 20 days of my life. I needed to do something with them - anything - to get them off my phone and provide closure to a dark time. Enter Lelainia Lloyd, a local visual artist, who showed me how visual art can be a path towards healing.
Next Essay: Visual Art as Healing
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