TL;DR: Want to learn to share your experience in photos? Sign up for Kristy Wolfe’s free 7-part photo class or check out her work documenting families with medically complex kids.
A lot of the projects Adrienne and I talk about doing involve amplifying an array of voices and helping people share their stories.
But these projects don’t get done.
It’s hard to claim there would be a difference between my work and drive-by storytelling. Co-creation requires a level of dedication that I’m not ready to commit to.
This is one of the reasons I’ve shifted from creating and sharing original content on our site (I used to publish three articles a day!) to curating pieces on other sites so people can find articles that speak to their experiences. Back when I shared an office with Jonah, Paul, and a handful of rotating interns I could focus on writing and editing.
The other reason I shifted away from original articles is that I’m not comfortable asking people to write for us when we aren’t paying them for their work. A few authors, like Donna, Bob, and Harriet, just want to get their stories out there. I also provide a home for orphan pieces — the things people feel compelled to share, even when they can’t get a publication to pay.
I resisted talking about myself for a long time because I’m not a very good example of a caregiver. I’m actually a comically bad example of a caregiver. But, just like self-portraits free me from worrying about conveying people in a way that doesn’t match how they see themselves, it’s easier to speak for myself than to try to capture someone else’s story.
Kristy Wolfe’s photos caught my attention on Instagram. We talked about the delicate nature of sharing someone’s story and we talked about how powerful it is.
Families capture joyful events like birthdays, weddings, and vacations, but we often have no record of our more complicated but just as important experiences. The tender moments of shared fear, the tiny triumphs, and the deep relief of easing into a plateau exist only in our memories.
Whirlwind moments — both traumatic and sublime — can be a jumble of flashes and emotions, rather than a coherent narrative. When we are truly living in the moment our brain is focused on getting us to the next moment, not forming memories.
Which is why having photographs of medical moments can be so therapeutic. When Kristy looks back at photos documenting her son’s second heart surgery, she gets to create the story of those experiences. Memories of fear felt in the moment become proof of resilience.
Memoir is a fraught endeavor because our story is never just our story. The desire to share our care work experiences is constrained by the desire to protect the privacy of the person we’re caring for and the other people in our lives. The shame of internalized ableism makes discussing interdependence feel like sharing our dirty laundry.
This is one of so many reasons we feel so alone while we’re surrounded by people who’ve gone through similar experiences.
As a society, we’ve taken kids who need care out of the disappointment rooms, but still keep their medical and care needs a secret. We’ll share no makeup selfies on Instagram, but even our closest friends don’t know about our experience with chronic illness. The only acceptable way to discuss illness is to proclaim that we have “battled and won” against it.
How many of us have had someone tell us their 97-year-old dad is totally independent only for it to later become clear that dad is getting 24/7 care?
Do they say he’s independent because care workers provide dad the ability to go about his life?
Or do they say he’s independent to hide the fact that he requires ADL assistance? Because acknowledging the support provided by care workers — and secretaries and wives — is viewed as an affront to the dignity of a man?
Kristy is a lot of things, including a mom, a medical mom, and a photographer. Some aspects of her identity might recede into the background when her role as a medical mom is brought to the forefront, but her life certainly isn’t “on hold” in those moments.
Kids are allowed to need their moms. Moms are allowed to need their kids.
Why does that ever change? Do any of us want to grow out of needing other people?
When you look at the story of your life — the experiences that made you who you are today and the values that shape your actions — what are you leaving out?
How could it be told differently while still being just as true?
Mindset isn’t the magic fix it’s sometimes made to be, but it doesn’t have to be a magic fix to be a powerful tool. The way we make sense of our experiences and the details we emphasize shape how we see ourselves.
Capturing our story in writing, photography, or any other media doesn’t have to be about sharing it publicly. It can be something just for us. Something that allows us to take control of our story.
Or it can be an incredible way to break the silence around interdependence and open ourselves up to support.
Caregivers are so good at advocating for the needs of other people. We’ve got complicated medical histories memorized and binders that document each piece of it. But our voices get lost sometimes.
If you’d like guidance on finding your photo voice, you can sign up for Kristy’s free 7-part email course on photography.
If you’d like to share your life on Instagram or Facebook, you can connect with the community by tagging them #facesofcare.
You can hear Kristy’s story in her own words here and see more of Kristy’s work capturing families with medically complex children on her website.
Thanks to Ella Rose Chary for having long discussions about non-extractive storytelling with me.
Ella’s quarantine projects include co-writing a musical about grief, How to Survive the End of the World, and creating a brave space community, The Things I don’t Say Project.