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I recently turned the age my mom was when I first got sick. I keep staring at this picture of us. It’s an old, wrinkled photo pulled from a box of early medical documents my parents have kept safe, tucked away in their basement for decades. That’s my mom – my beautiful mother with an ethereal glow sparkling out of her cheeks. What is she looking at? I wonder what’s prompting that smile. That’s me with her – the youngest of her 6 kids – bald from chemotherapy – my smile a tight line, my protective hand shielding my own babydoll’s line of vision. Is it my imagination or are there actual plots of murder behind those big brown eyes? We’re right there next to each other – me in her arms, our bodies close. If I moved my ear four inches, I’m sure I could hear her heartbeat. And also, I notice, we’re looking in such different directions.
I was diagnosed with an aggressive, rare cancer just after my first birthday and was not expected to live. I reread that sentence and cannot imagine being met with a similar prognosis for my own baby. The early years of my life were a rampage of violent, nauseating, painful, lifesaving treatments. I have so few intact memories from these years that are entirely mine, but I grew up hearing the stories – the same stories – again and again. The 3 hour drives they would take every month – mostly in their 1976 Ford LTD they bought for $300 – to bring me to the big hospital in Kansas City for chemo and radiation treatments. The night I coded blue and almost died while my dad waited in the parking garage. The New York City surgeon who cried when the operation that saved my life left me paralyzed. So many stories about screaming from needles, the way my face would scrunch up from the pain that took my baby breath away. Also, how, almost overnight, I traded my protests for smiles & sweet songs, even as I vomited in my hospital crib.
I wonder what each of our brains had to do to survive those years.
My mom leaned into her role of storyteller – the keeper of family tales – holding them together with confidence & certainty. I think this makes sense. Especially when life is scary and definitely uncertain – especially when you and your baby are not okay – stories give us something to grab a hold of. When the cancer was finally gone, she and I traveled around to schools and churches telling these stories. Stories of hope and triumph, grace and comfort to buoy – the audience? me? herself? humanity? – to keep us all going when life feels impossible. As the stories went, God kept me alive to be a testament to his goodness. My joy was supernatural. If this little girl with paralyzed legs and a hot pink wheelchair can be filled with God’s radiance, surely you can be too. Stories told again and again until they felt like artifacts we visited in a museum.
When I was maybe 6 or 7 – old enough to have forgotten most of my own memories with cancer, but also old enough to have heard the stories of those years again and again – we spent the day at the hospital doing scans and tests to see if my cancer had returned. I knew my mom was afraid. I also knew this day could be fodder for the canon of stories. As we passed through the automatic hospital doors and into the bright sun outside I said, “It’s okay if the cancer comes back, Mama. Because I know if I die I’ll just go to heaven.” In my memory, my mom cried, and I felt satisfied that I’d given her great juice for the story. I’d played my part perfectly – the angelic sufferer, the saintly sick kid. Audiences would love it.
I grew up to be a storyteller, too. Of course I did! With an urgency that might be compared to labor pains or hurling after food poisoning – you pick! – I wrote a whole book of my stories, planting a flag in the dirt to claim a narrative of my own. Stories that came – not from my mother, not from my church, not from my culture – but from me. Or one version of me? Because, honestly? I am still digging – deeper and deeper – trying to find the voice I lost before I have memories – trying to find the baby who learned that my survival depended on trading my protests for smiles & sweet songs, even as I vomited in my hospital crib.
Now I have a son the age I was when I was going through cancer treatments. And holy shit. I feel like I’m living two parallel timelines – the child waiting for the doctor to tell her she’s a good patient is also the mother waiting for her son to tell her she’s a good mama; the child leaving her body as she prepares for another needle to press into her skin is also the mother trying to figure out how to stay present as her toddler SCREAMS when it’s time to clip his fingernails; the child trying to keep her face neutral – I’m fine! – as she sits on the side of the inaccessible playground is also the mother trying to parent her child on the edge of the inaccessible playground – we’re fine! – while children she doesn’t know holler over “What happened to you?”
It’s messy. And I’ve noticed the way my brain scrambles for The Story as a solution to the mess – a way to organize, process, make sense of the tidal waves of emotions racing through my body.
It can’t be a coincidence that two of life’s most tender, most uncertain experiences – motherhood and disability – are so often given exceptionally flat narratives. Two experiences undeniably full of so much dimension, texture, contradiction – experiences so often on the front lines of life & death – are also among the first to be diminished. Is it fear? There’s too much at stake? A heightened need for someone to tell us what it all means? Can we open up our stories and still survive? Can we stay tethered to the full range of the beauty and tenderness and terror coursing through this place? Can our stories swaddle us – and also unfurl like a never-ending red carpet that disappears into the horizon? I want to figure out how to tell that kind of story.
As I cross the threshold, with all the benefits of hindsight, into this age my mom was when she set out on one of the hardest stretches of her life, I find myself looking at my own canon of stories with renewed scrutiny. I want to pay attention to the stories that are missing – that feel too hard or scary or embarrassing or insignificant or inconvenient to tell. I want to preserve the stories that don’t fit the larger narrative. I want to pay close attention to the stories as they are – not pull and piece together the narrative until it satisfies, educates, pops. I want to be careful with our stories – mindful of the stories that are for the public and the stories that are just for me, my son, my partner – mindful of the gap between my stories and their stories – curious about the moments when we are looking in different directions. I want to be brave enough to let stories grow & change as we grow & change. I want to greet our stories – old and new – like brand new butterflies, wings still wet. To meet them with curiosity, a willingness to keep them alive instead of pinning them to a board.
CHEWY QUESTIONS – If you want to continue to think through the ideas here, these questions are for you – please feel free to explore this in your personal writing, to talk about it with your people, or to join the comments on Substack.
Did you have a prominent voice narrating your early life experiences? If so, how would you describe that voice? What were the stories told and retold?
What stories have helped you survive? Are those stories still holding up? Or weighing you down?
What stories, if any, from the past have been showing up in your present lately?
Thanks for being here!
xoxo
Rebekah
I’m dressing up as you for Halloween.
I can tell what you’re going to say before you even say it because I have listened to this So many times I am even saying it at the same time as you