Podcast: Navigating Rare and Chronic Conditions with Creativity and Grace (Part 1)
You may have noticed that I no longer share much of the hard stuff I live with on social media. It’s mostly just snippets of what I love and whats wonderful in my life. I’ve turned down podcast interview invitations to talk about grief, chronic illness, and disabilities for a few years now too.
It’s not because the hard is all gone (there’s plenty hard still). And it’s not been about masking or - godforbid - toxic positivity. While I still find myself processing my own grief through my art-making (and have continued to share some of that where it’s relevant to the artwork’s story), capturing and sharing moments of delight (what I call my "Delight Practice") has become much more central to both my creative practice and my own wellness.
So this podcast interview with Helen Samson Mullen and Nona Jordan from the Autoimmune Campfire is a rare event these days. I’m pleased to share it with you - especially as today my family and I are celebrating the 10th anniversary since my brave brother gave me a kidney and a second chance at a "healthy" and active life after kidney failure.
In our conversation, I share:
my story of loss, chronic illness, and disabilities, how it's impacted my life, and what's been most difficult about it
the unique challenges of invisible symptoms and uncertainty - themes common in many chronic illness and disability stories
an Indigenous perspective on disability that I learned from Indigenous scholars and activists, Dorothy Lonewolf Miller, (Blackfeet) and Jennie R. Joe (Navajo) that made the biggest difference in helping me to live well with chronic illness and disabilities
Thanks to the joys of sarcasm and grace, we had a lot of laughs while talking about the challenges, grief, resilience, and creativity of living with chronic illness and disabilities!
You can watch our conversation here or listen to it on your favourite podcast player.