The mirror of worth
As I heal from what I hope has been a successful surgery, I am grateful to my friend Bud, AKA Emma’s dad, for offering to fill in for me on the blog this week. With the potential cuts to both Medicaid and the NIH on the horizon, Bud's insights provide a much-needed reflection on how we perceive worth. While his words are philosophical, the consequences of perceived worth are a reality for millions.
Also, Bud is starting his own Substack blog and I highly recommend giving him a follow!
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There is a story we are all born into, though few of us ever realize we are characters in it. It is a story about value—who has it, who doesn’t, how it is earned, how it can be lost. For most of my life, I accepted the story without thinking. It hovered everywhere: in the way people praised “success,” in the way we measured achievement, in the way even kindness often had a price. I never challenged it because it served me. Or, at least, it seemed to.
And then my daughter was born.
She came into the world silent, fragile, and impossibly strong all at once. And for the first few months I told her that same story. About all the things she was going to do and be and change in the world.
The morning we got Emma’s diagnosis, the world shifted. Not in the cinematic way. It was quieter. Stranger. The air itself had thickened, folding time around our family's trembling form. Genetic tests, medical phrases strung together like barbed wire. Her diagnosis was the world’s first layer of worth settling over her like a second skin.
At first, I thought my task was to defend her worth—to argue it, prove it, shout it so loudly that the world would have no choice but to listen. To gather up all the ways she was beautiful and brave and full of life, and offer them up. I thought if I could just say the right things, if I could demonstrate how much she meant, she would be seen. Really seen.
But slowly—achingly—I began to understand the problem was not that the world had misjudged her worth. It was that it believed it had the right to judge it at all.
We talk about “worth” as if it’s a thing people own, a quantity to be weighed or exchanged. As if it’s stitched into the body, waiting to be measured by curious hands. But what if that’s all wrong? What if instead the thing we call “worth” is more like a mirror. Reflecting the values, the fears, the priorities, hopes, wishes, desires, of those who are doing the looking.
When someone looks at my daughter and sees something pitiable, that does not reveal anything about her. It reveals what they are afraid to live with, and without. When someone looks at her and sees inconvenience, it exposes their obsession with time, productivity, success. When they see burden, or even, sometimes, inspiration, all they reveal is themselves—their dreams, their terror of dependence, their reverence for strength disguised as independence.
The Kartoffel Emma doesn’t change depending on who looks at her, the face in the mirror does. She remains, quietly and irrevocably, herself. Beyond their gaze. Beyond mine, sometimes, too.
She has never walked, uttered a word, or met society’s ledger of value—building, earning, producing. To many, this makes her worth less.
Worthless.
But these standards are rotten at their root. Our culture produces mindsets designed to prize independence and to reward productivity and self-sufficiency—words that feel clean and sharp in the mouth, but become weapons when left unchecked. Every delayed phone call, every sigh across the clinic desk, every fight for what she needs. Insurance companies, educational institutions, even the casual well-wishers—all trained, in different ways, to weigh and measure.
They play at neutrality by giving you forms to fill and boxes to check, silently offloading responsibility saying, ‘It’s on you if she doesn’t get what she needs, so make sure you put down the right information.’ But the calculator crunches its numbers beneath it all. When an insurance claim for a lifesaving breathing treatment was denied, citing “insufficient necessity,” the message was clear: She is not worth this.
But they are wrong. Not because through some clever linguistic gymnastics I can prove she secretly meets their standards, but because the standards themselves are wrong.
These systems put a premium on autonomy, but life is not a solo act. We are tied together, knotted in needs and care and fragile dependencies we spend our whole lives pretending to outgrow.
Existence is relational. Always.
Emma reminds me of this not with words, but with her presence, her weight, her breath. In the way she leans her head against my chest, in the way her eyes seek mine when she’s afraid, in the way she startles at sudden sounds. In the way my hands, without thinking, adjust her head against my shoulder, sensing the onset of a seizure. In the small, radiant spaces where our lives brush against one another, something real happens—something that has no price, no ranking.
There have been nights, more frequently as of late, when I sit by her bed and wonder how we got so lost.
When did we decide that a human life must justify itself? When did we forget that to breathe, to be, was miracle enough? I watch her sleep—the subtle fogging of the oxygen mask with each exhale, a tiny cloud of life—and I feel it. A kind of feral, dogged certainty of her primordial self.
And yet—this certainty wavers too, some days. I am not immune. I was raised in the same systems, swallowed the same stories about strength and success. I often ache to translate her into terms the world will recognize, relate to.
The harsh truth is that none of us comes to this question with clean hands. Even our best intentions are shaped by fractured tools. We misjudge not only because we fail to care, but because the very instruments we use to care — our seeing, our knowing, our empathizing — are themselves distorted by the invisible inheritance of culture, by half-known fears, by wounds we barely recognize in ourselves.
As a result, worth is weaponized not only by the cruel, but often — heartbreakingly — by the tender-hearted, simply because the mirror they look through is cracked. And they cannot see how their own distortions shape what they think they behold.
When people ask, What will she do? they are indirectly asking: What is her life for? My answer is simple:
Her life is not for anything.
It simply is.
Her worth is not transactional. It is not a prize awarded after meeting some invisible quota. It is the marrow of her existence, woven through every breath she takes. She need not earn her place here. She is the place. The center of a thousand ripples radiating through all she meets with love, grief, sorrow, and wonder.
- Words courtesy of Bud Hager
ID: A young girl, Emma, is smiling at the camera, laying against a yellow blanket. She is wearing pink mirrored sunglasses. In the reflection of her sunglasses you can see her dad, Bud making a kissy face and taking the photo with his phone.
