If your heart is broken, make art with the little pieces.
I'm beyond thrilled that the Journal of Medical Imaging and Radiation Sciences accepted my photo essay. These are pictures I took the 20 days I was in radiation therapy four years ago. (Yeah, I'm never gonna get over it. The pandemic will show us all there is no 'back to normal' after a catastrophic life event). The photo essay includes ten photos and a short write-up. Thank you to my editors Amanda, Carly and Lelainia for their support. Being published is never a solo endeavour!
As is my way, there is a story behind these photos. I've explained them in my book, Bird's Eye View: Stories of a life lived in health care. Here is an excerpt.
Walking the cluttered halls of the cancer hospital as a patient, I saw very little that was welcoming or patient-friendly. Pictures were crammed into displays on the walls. There were some pieces that were donated by a family of a patient who had died, like a large lovely quilt. This is a nice sentiment, but it is also disconcerting for the patients who were still alive and roaming the halls.
I had a burning desire to do something with my radiation treatment photos. I had taken one photo for each day I had radiation, twenty in all.
Lining the walls of the cancer hospital were photographs. They were not photographs from patients, however – they were the results of a staff photography contest. Could there really be anything more provider centred than the results of a photography contest for staff lining the hospital walls? Physical space does speak to the culture of an organization.
“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.
She suggested I come to their focus group instead (already scheduled, the next week, at a time I have to pick my kid up from school). I did not attend. This is not the way you engage. This is the way you disengage.”
My usual call to action is: Don't disengage. If you partner with patients, you never know what magic might happen.
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