our stories matter.
We are trained from the narratives told to us at the earliest age that there is a beginning, a middle, and an end. Literary mythology has us believing that there is a resolution to the problem presented in the arc of the story. While this makes for a tidy way to write, this way of thinking, of knowing stories is false. In life, there are rarely tidy endings. As Kate Bowler says, “A life is never finished, even when it’s over.”
Real life is more complex, woven by incomplete memories and often relying on a singular perspective, when in fact, stories are more tapestries of multiple lenses in scenes over time. And still, the singular story matters. The singular story can be placed alongside, often interwoven to another singular story, until we see the tapestry of experiences that reflect more of the realities of life in complicated bodies. Bodies that are not tidy, stories with multiple protagonists and many more antagonists, and oftentimes beauty in an non-traditional, non-mythical sense.
I am an adult living a double life. I live as mom, partner, professional, friend, traveler, story-catcher and I live as adult with cystic fibrosis (CF). CF is an invisible illness; it lurks in the shadows of my thriving. If you meet me at a conference or on a plane or in a classroom, you don’t know about my CF. I claim CF as mine for two reasons - because every adult with CF has a unique experience with the illness and because I’ve learned that it is part of me, of what makes me who I am, of my story.
My professional career began in a river with a group of kids. I wanted to be a writer and started strong my freshman year of college. But the following summer, I lived on the beach with my childhood best friend and missed the deadline to renew my near full-ride scholarship. I took a semester off, and after many more detours due to my health, I found a mentor who took me on a different journey. Teaching. I became a field course instructor for a small natural science school near where I grew up along the foothills of Colorado’s Rocky Mountains. I was more of a co-pilot to exploration than a teacher in those days, the best kind of teaching, and that work evolved into a masters degree in education and a license to teach elementary school.
I’m not a “I just love kids” kind of teacher. I am a “I am in love with watching the process of learning” teacher. Standing in the South Platte River as it enters the prairie from the mountains with a small group of ten year-olds in their multi-colored Crocs and variety of hats, smelling of sweat and sunscreen was like bearing witness to the formation of their brains. Reed (1996) cites the importance of these encounters with the world. I wanted more.
I’ve had a million jobs. My teaching partner in an elementary school used to tease me; every time someone would mention a restaurant or retail store, he would say, “Kelly worked there, too,” and I probably did. I can’t even make sense of my own work timeline because I never worked only one job at a time. But, I know exactly what I gained from each experience and how, like a pinball, I was propelled from each position into my next adventure.
Eventually I made my way to an elementary school in Castle Rock, Colorado perched up on a hill looking west to the mountains and next to the Castle Rock that gave the historic ranching town its name. My role in this school was to work in a newly created outdoor habitat certified by the National Wildlife Federation as the school’s science teacher with the students grades PreK-6 and with the teachers, to provide training on how to use an outdoor classroom for inquiry and wonder. This space was lovingly called the Habitat by students, teachers, and the community.
Until this time, I think I was more of a teller than a listener. In teacher preparation, we are told to listen but telling is more of the model. We talked endlessly about breaking the model of student-as-empty-vessel, but education is not a system built for listening. Listening takes time which is the most lacking resource in Schooling.
As I worked with students in the outdoor space along the drainage lined by towering Gambel Oak and with a small pool of water that eventually became swollen with cattails and at-risk Leopard frogs, I was able to return to my days of co-explorer and wanderer WITH students instead of teller TO students. My own questions began to arise about their experiences, which led to applying to a doctoral program and my journey of understanding stories as data.
For eight months, I listened to students from fourth to sixth grade while they were in the Habitat. I recorded over 700 hours of video and audio. The students took me on walks through the space, showing me places I didn’t know existed in the physical world and/or in their imaginations. I interviewed students and held focus groups. They told me stories of their lives. They told me stories about the Habitat, feeling like they were “in the wilderness,” of having secret forts and the discovery of insect galls attached to branches. But they also told me stories of feeling so much academic pressure they thought they would burst, social complexities of being twelve and part of a community, celebrations, heart aches. Another teacher called this space the “let down valve,” referring to the way students opened up about their lives while walking in a patch of ponderosa pine tree saplings planted several years earlier.
In Schooling, we work on timelines and learning objectives. We structure each minute of the students’ day to pack in as much content as we can. Content related to the state educational standards that dictate benchmarks for every student to achieve at each grade level without a single consideration of their stories, of their home life, their physical health, their mental wellbeing, or their different abilities to learn. Schooling says to teachers and students that stories don’t matter. Only test scores. At this pace, we lose the ability to listen to students well and to respond to them as humans becoming in the world. We can acknowledge, but there is no time in the academic day for stories, unless they are written to a specific prompt. This is a failure of Schooling’s systems and structures. One of many.
The stories shared with me in the Habitat taught me many things about the importance of access to nature for children and youth, mental and physical wellbeing in a high pressure educational system, and how to view children and youth in schools as individuals with common and not-so-common experiences. Those stories shared with me and placed into a coding scheme to reveal empirical results about nature mattered beyond data. They were shared, heard, and released into the world. They mattered. But most importantly, that year of research taught me to listen and to hear. I found a soul-mate in this work, another researcher with an ear for stories, and we created an evaluation firm based on listening. It was the most rewarding work I’ve ever done.
Even in the untidy way that individual stories don’t necessarily align to the narrative arc of beginning-middle-end, they slice through the surface of humanity.
Stories reveal the underbelly of our existence, sometimes bloody and raw and tattered and mostly without a hero’s journey except for just getting through. In mainstream narratives, we are over-exposed to glamour and under-exposed to real life. The ok-ness of simple, messy existence. That is where the magic is. The beauty lies in our day to day stories of cooking dinner, taking a walk, choosing which eggs to buy at the grocery. Magic.
Busy professional lives and day to day functioning squeeze out deep listening. And Medicine, like Schooling, leaves little room for personal narratives. We are boiled down to name, birthdate, and biometric data in computerized charts glanced through in 15 minute appointments. We are known by our pathology, not our richness. In one life, I was listening. In the shadow life of illness, I was not being heard.
People who know often tell me how strong I am, how resilient, how inspirational. While I appreciate their characterization of me as a hero, I’m not sure they know how much this disease comes with an unheroic way of getting my ass kicked on a daily basis. I am not trying to be inspirational, only fully alive. I come to this platform to pull back the curtain on living with an illness that is easy to conceal and is slowly killing me. Now, more than ever, we need to listen to the stories of chronic illness in bodies that are messy and complex and beautiful and terrible. Because our stories matter. We matter.