It’s been 14 years since Owen died. That’s 2 more years than how long he was alive. Which is both terrible and amazing for me to consider. I dreaded the “12 years since” mark for a long time. It’s come and gone, and now I truly feel that I’ve come out the other side.
Since Owen’s death, I’ve built a career that is both rooted in and somewhat distant from my own experience. A book, a master’s degree, writing, speaking, a podcast. Most of it organized around critiquing the very practices that would have me front and center as a person with lived experience. There’s an irony there, one that I find amusing.
To be honest, I don’t do that so much anymore. Currently my body of work sits in brooding exile from the exuberant and unstoppable world of patient engagement, which has become ever more formalized and baked in to government and institutional agendas. This is just my impression of course, because I’m not in front of audiences as frequently as I used to be. But I think I’m more right than wrong. I do still have a podcast (Matters of Engagement, with Emily Nicholas Angl) which I love producing, and together Emily and I still get to stir things up on occasion. But even there, the themes have shifted from sharp critique of engagement to broader terrain.
My interest in ‘holding space for critique’ is very much alive, but I’m preoccupied now with a new project: building out my workshop, which is currently called “Communicating with Caregivers”. This post isn’t specifically about the details of the course, so I’ll link to the details.
What’s notable, and what I want to write about here, is that it’s a return to directly speaking about and sharing my lived experience. Not as a foundation, not as inspiration, but as material for teaching. I share a slideshow of my young family’s life, I give a lecture on how we’re all not really communicating but rather ‘performing communication’, and then I share some specific stories, followed by a rich guided discussion.
The text for teaching is my own book, No Ordinary Boy. In fact, I stand at the front and read to attendees. I’ll admit, it goes over well! It helps me stick to my own plan, and, I figure: I wrote this already, might as well use it.
Many chapters in the book are almost stream-of-consciousness accounts of my experiences, written as though told in real time. So there I am, in the workshop, essentially acting out parts of my own life that were written by me over a decade ago. Showcasing, in painful detail, how my younger author-self (and, of course, my actual younger caregiver self) didn’t even know the depths of despair I was experiencing. What I did know was that I was grieving a life I would never have, and was continually fending off the well-intentioned but utterly useless and depressing optimism and hope performed by everyone around me. And so now current me – 55-year-old me – is both performing this drama and also acting as interlocutor to the past.
Despite the fact that I’ve built part of my career on this one 12-year-long remarkable journey with my son, I haven’t ‘gone there’ in a very long time. In fact, I wrote the book so I wouldn’t have to keep repeating the story. And I spent years honing my critical thinking skills, contemplating policy implications, looking at health service delivery. Anything but continue to dwell in my own experience. So this return to the material of my very own life feels a bit bewildering.
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I am so passionate about delivering this course, it’s honestly the first time I’ve embarked on a project feeling that I must do this. Which is no small task. Lucky for me, I like hard work and I like making things. And when I feel it come together in a room of health care providers and I can sense the impact it’s having, I feel a joy and fulfillment that’s hard to describe.
Which of course sits in contrast to the feeling I have actually teaching the workshops, laying bare my despair and hopelessness. I couldn’t dare admit these feelings when I was a caregiver, and I was barely naming it when I wrote the book. So now, in the workshops, recounting the stories I wrote so long ago, I can indeed identify the despair and talk honestly about it.
What I didn’t anticipate is that talking about the despair is just a breath away from actually feeling it, or at least looking it in the eye. Maybe that’s why developing this workshop feels so important; it’s bringing the despair closer, and maybe making it less terrifying.