Chronic Creatures

And the stories they want to tell...

My mom always told me that I should write a book about my life with Type 1 diabetes, and then about my entry into the world of early childhood education, that these histories might inform and inspire others… I never felt that imperative because of the personal nature of chronic illness, how it tailors itself to the individual and becomes their unique companion. It seemed arrogant to me to assume interest in my little corner of the shadow side when there are so many that I deem more worthy of taking up space. And early childhood education. What an intense system of contradictions: the challenge of developing and honing the skills it takes to nurture our most vulnerable humans—many affected by traumatic experiences—leading to the reward, the most foundational work of human sense of security and wellbeing being the most societally misunderstood and tragically underpaid.

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In The Daycare Myth: What We Get Wrong About Early Childhood Education (and What We Should Do About It) (2024), Dan Wuori writes, “During precisely the period that science dictates the need for stable, nurturing relationships with engaged adults, we provide instead a revolving door of minimally qualified staff, paid at or near their states’ minimum wages—59 cents less per hour than dog walkers” (p. 12). I was fortunate during my time as a classroom teacher to have employer-funded health insurance, otherwise the extremely low-paid, demanding and critical work would not have been possible for me or the children and families I supported. It is about so much more than care, it is about building brains and healing wounds: “What might be perceived as trauma is different for each person. Positive relationships and supportive community influence whether something will be experienced as trauma. Connecting with a child who is overwhelmed by stress and helping a struggling parent can prevent trauma from being passed on to the next generation” (Chamberlain, n.d.).

More on this to come…

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And yet, I did end up essentially writing a book in the form of my dissertation on perspectives of trauma-informed principles in teacher preparation programming. This labor was a cognitive one more than an emotional one, and as much as I would like for it to be, it is not terribly relatable or accessible in its language. Now when I think about writing a memoir and feel a gentle pull to do so, I immediately envision the source of the narrative as an outsized ego, even as I count myself among the ranks of memoir readership. My biggest obstacle is not that I feel I harbor narcissistic tendencies or believe I have nothing worth saying; I’m pretty sure I believe that I haven’t yet unearthed and refined the message I want to deliver. We are a storytelling, story-receiving, and story-processing species, so I also wonder if I even need a distilled and clear message to share something of value. I find myself collecting many unanswerable questions and intangibles, like where a person’s story is located as it tangles and untangles, orbits and collides with a multitude of other stories. Where does a person’s story begin, and is that where it should start to be told? As chapters are borrowed and shared, riddled with fuzzy chronology, which pieces are ours to impart? What do you feel is the anchor of your story, what is fully yours? What is shared in your story?

As I think about what it is to be human, and to be uniquely the human that I am, I start imagining the themes I could extract from what I have experienced so far that has formed my identity. The first theme would be trust and mistrust of the environment and systems we are born into. Probably not coincidentally, trust versus mistrust is the first of Erik Erikson’s eight essential crises outlined in his theory of psychosocial development, corresponding with the age range of birth to 18 months (Lewis, 2024). Another theme: trust and mistrust of the integrity of the body as it serves as a vessel for the human experience. Currently: framing the cultivation of love for the self as essential to community and global health. Forming a schema of faith, its nature and function. What would you identify as your life themes to date? Where have your experiences taken you? What might have been different?

I will take these four themes and relate them to four values I elevate for us all above most others: courage, curiosity, compassion, and community. While I may not write a memoir, I will digest experiences from my past and use the pieces for present healing. I will craft these themes into meaningful—and perhaps actionable—items. Tales from beautiful souls that I have read recently are like a beacon for me. Among these are The Body Is a Doorway: A Memoir by Sophie Stand, a gorgeous weaving together of magical elements of the natural world with the darkness of illness, pain and suffering: “The more time I spent outside, the more I doubted that the best stories were by human beings. We had not invented storytelling. We had arrived in media res, inside a biodiversity of stories already millions of years deep into a geological drama both too small and too large for our limited sensory apparatus to ever comprehend” (p. 89). To me, her message is about contending with the push and pull of opposing forces, of holding space for what it beautiful and what is beautifully horrific in humanity and biology. She writes:

I wanted to recover an instinct for surrender and safety. I desperately wanted a guiding principle or divinity to make my decisions for me. Maybe that’s why I’d spent years studying ancient healers and miracle workers. When we have known loss and violence and incurable pain, when we have spent years trying to heal the aftereffects of these ruptures only to find ourselves wearier and more defeated than before, sometimes all we want is someone else to tell us what to do. We want someone to give us the right placebo: you are healed. Stand up and walk (p. 234).

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Another comes from Hospicing Modernity: Facing Humanity’s Wrongs and the Implications for Social Activism by Vanessa Machado de Oliviera, where the author’s brush with death and dance with the fragility of form awaken the realization that our personal healing and grounding is not anyone else’s responsibility but our own. During her recovery from a terrifying and life-threatening accident, she notes how her perspective began to shift.

… something really important clicked in my being. It was something about the gap between how I felt, how others perceived me, and where my needs were met. It was not that I stopped caring about my impact on other people; it was not indifference, vindictiveness, or numbing—quite the opposite, actually. It was more to do with realizing that I could not expect that other people…could “ground” me. I needed to do that myself and I did not require an audience for that to happen. It was about both establishing a boundary between the world within me and what was happening around me—especially in a dangerous situation—and about finding in this internal world and anchor, a source of vitality, that did not depend on external forces to function (p.205).

Her focus is on the global fall of modernity, the subsequent climate crisis and our relationship to our bodies, our communities, and Earth, and she makes it clear through presentation of facts, personal stories, thought experiments and tribal adages that the separability we foster in our upbringing is an illusion and an insidious force that harms us individually and collectively: “But what if the sense of separation by modernity is both the result of and a reinforcement mechanism for distinct neurochemical and neurofunctional pathways in our bodies?... This reorientation causes us to feel separated from the larger metabolism, and it removes our sense of the intrinsic value of our lives and the lives of others” (p. 116). Whose stories, formal or informal, have inspired (or continue to inspire) you and why? What about your own story inspires you, or has motivated others in your path?

I have no clue where my voice blends in with infinite other voices, but it might be that it isn’t my role to figure that out. A cosmic harmony of voices might be happening regardless of my awareness of it. In the meantime, I will be working toward the following in hopes that a story waiting to be told will slip from my brain through my fingertips and onto the page:

• Curiosity: Trust of people and systems for those who feel despair

• Courage: Trust of bodily integrity for those with fear and chronic conditions

• Community: From self-love to communal health for burned-out caregivers

• Compassion: The nature and function of (my) faith for those in quest of (a) spirit

What else would you like to ponder together?

References

Chamberlain, L. (n.d.). Connections matter North Carolina: Developing brains, relationships, community. Prevent Child Abuse North Carolina. www.connectionsmatternc.org

Lewis, R. (2024, July 16). Erikson’s 8 stages of psychosocial development, explained for parents. Healthline. https://www.healthline.com/health/parenting/erikson-stages.

Machado de Oliviera, V. (2021). Hospicing modernity: Facing humanity’s wrongs and the implications for social activism. North Atlantic Books.

Strand, S. (2025). The body is a doorway: A memoir. A journey beyond healing, hope, and the human. Running Press.

Wuori, D. (2024). The daycare myth: What we get wrong about early care and education (and what we should do about it). Teachers College Press.