Our Little Kartoffel

Tag: grief

  • What We Mean by Tragedy

    On the Fierce, Fragile Beauty of Lives That Defy Resolution

    “Time, which sees all things, has found you out.” —Sophocles

    What if tragedy isn’t the opposite of dignity, but one of its deepest forms?

    When I call my disabled daughter’s life a tragedy, I don’t mean it’s pitiable. I mean it’s vast. I mean it defies easy resolution. I mean it reveals something true about being alive: that we are fragile, that we suffer, and that this doesn’t make us any less worthy of love. In fact, it might be the very thing that binds us.

    But “tragedy” is a word that makes people flinch. In disability discourse, it’s often seen as a slur, as something said by those who don’t understand, those who haven’t stayed up all night suctioning lungs or waiting out seizures. So we counter it with mantras: My child is not a tragedy. Our life is not a tragedy.

    I understand the impulse. I’ve said those words too. They were my shield. My insistence that she was more than how the world saw her. And she is. But lately I’ve started to wonder: what if we lose something important when we throw the word away?

    Literature has long given us another meaning of tragedy. Too often, we mistake the tragic for the sentimental. We want stories of suffering to leave us uplifted, we want catharsis without consequence. But this view turns pain into a kind of theater, something that performs for our edification. Especially now, when lives are streamed and suffering can be shared as content, we are trained to feel about pain without doing anything with it. We confuse feeling moved with being present. But real tragedy isn’t built to inspire. It’s built to hold what can’t be tied up. It’s not there to cleanse the spirit, but to stretch it. It asks more of us, not less.

    Unbearable Insight

    “How dreadful the knowledge of the truth can be
    When there’s no help in truth.”
    — Sophocles, Oedipus Rex

    In Sophocles’ Oedipus Rex, the tragedy doesn’t hinge on weakness, but on knowledge. Oedipus is noble, capable, determined. But his relentless pursuit of truth leads him to unbearable revelation: that he himself is the source of the plague afflicting his city, that he has killed his father and married his mother. The horror is not in what he did, but in the moment he knows. Tragedy, here, is clarity. Not punishment, but insight. What if our children’s lives ask that of us too, to see clearly, even when it hurts? To witness the full scope of their experience, not just the parts that reassure us? Tragedy doesn’t come from weakness, but from the revelation of something uncontainable.

    The Space Between

    “I know indeed what evil I intend to do, but stronger than all my afterthoughts is my fury, fury that brings upon mortals the greatest evils.”

    — Euripides, Medea

    In Euripides’ Medea, tragedy emerges not from simple villainy, but from unbearable contradiction. Medea is both a grieving mother and a woman who commits the unthinkable. She is betrayed by Jason, abandoned in a foreign land, stripped of home and identity and yet, she is also the one who enacts vengeance so devastating it collapses the moral order. What makes Medea tragic is not just the horror of her actions, but that we feel her pain even as we recoil. She is victim and perpetrator, tender and terrifying, powerful and powerless. Her grief cannot be comfortably resolved. Euripides refuses us the moral simplicity of heroes and villains. Instead, he gives us a world of terrible beauty where suffering twists the soul and love becomes unbearable.

    I think of this when people rush to frame my daughter’s life as either a story of resilience or a cautionary tale. These narratives, even when well-meaning, flatten her experience. They miss the way she lives in contradiction. She is utterly dependent, and yet full of presence. She cannot speak, yet expresses a will that shifts the mood of a room. Her body is fragile, and yet she has survived countless crises. Like Medea, her story resists tidy categories. And that resistance is precisely what makes it tragic. Not in the sense of despair, but in the sense of magnitude. She lives in the space between extremes. And she invites me to live there with her.

    Stripped of Logic and Speech

    “Never, never, never, never, never.”
    — William Shakespeare, King Lear

    In King Lear, tragedy unfolds through disillusionment. Lear, once a powerful king, demands public affirmations of love from his daughters. When the one who loves him most refuses to flatter him, he banishes her. Slowly, Lear is stripped of power, status, illusion. He goes mad. But in that madness, he begins to see the world as it truly is. He recognizes suffering, recognizes love. The heartbreaking image of Lear cradling Cordelia’s body is the climax of this recognition. “Never, never, never, never, never,” he says, holding her. No redemption, no lesson. Just loss, laid bare. When I hold my daughter during one of her seizures, knowing I can’t stop it, only be there, this is the Lear moment. Not hopelessness, but exposed love. Not weakness, but naked fidelity. Raw grief, stripped of logic and speech, mirrors my recognition of love within powerlessness, how nothing is resolved, and everything is still held.

    A Haunting

    “Definitions belong to the definers, not the defined.”
    — Toni Morrison, Beloved

    In Toni Morrison’s Beloved, tragedy lives in memory. Sethe, a formerly enslaved woman, is haunted—literally and emotionally—by the daughter she killed to spare her from being returned to slavery. Beloved returns as a ghost, as hunger, as ache. Morrison doesn’t sentimentalize this pain. She lets it haunt the reader as it haunts the characters. Sethe’s love is wild, desperate, impossible. There is no tidy moral, no healing arc. And yet, through this pain, Morrison gives us something sacred: a mother who refuses to let her child’s suffering be erased, even at the cost of her own peace. This, too, resonates. I don’t want to sanitize my daughter’s story. I don’t want to tell it only in hashtags and victories. I want to let it haunt, not as terror, but as truth. Not to terrify, but to make space for the full, uncontainable weight of her life. A haunting that resists closure, reminding me that some pain must be remembered, not packaged, and that haunting itself can be a form of care.

    Monstrosity as Unacknowledged Pain

    “I am malicious because I am miserable. Am I not shunned and hated by all mankind?”
    — Mary Shelley, Frankenstein

    Then there is Mary Shelley’s Frankenstein, a story so often misread as a simple horror. But Shelley’s monster is not monstrous by nature. He is sensitive, intelligent, and yearning. What he wants most is connection. What wounds him is rejection. He is denied community, denied kindness. The tragedy is not in his creation, but in his abandonment. And it is this abandonment—via the world’s refusal to witness his pain—that drives him toward rage. In some ways, this mirrors how the disability world is often treated: as either heroism or horror, with nothing in between. When we only show our children overcoming, we risk Frankenstein’s fate: we deny the reality of their rejection, their complexity, their unfulfilled needs. We fail to look directly at what the world refuses to hold. This reframing of monstrosity as unacknowledged pain, helps me draw the connection between the disabled body and the world’s refusal to face suffering without distortion.

    Tragedy as a form of Sacred Clarity

    “It is only as an aesthetic phenomenon that existence and the world are eternally justified.”
    — Friedrich Nietzsche, The Birth of Tragedy

    Finally, Nietzsche’s The Birth of Tragedy argues that true tragedy arises when the Apollonian (order, reason, form) and the Dionysian (chaos, passion, suffering) are held in tension. Our culture tends to prefer the Apollonian. We like order, progress, neat story arcs. But my daughter lives on the edge of the Dionysian. Her seizures, her pain, her unmeasured time, they defy form. And yet they are beautiful. Fierce. Sacred. Nietzsche believed that Greek tragedy, at its peak, didn’t resolve the world’s suffering; it revealed it, and found something sublime in the revelation. When I say her life is a tragedy, I mean it in this sense: it is not less than life as others live it. It is more. Too much for tidy narratives. Too much for order alone. Suffering doesn’t have to be overcome to be meaningful, that tragedy can be a form of sacred clarity.

    Tragedy offered audiences not moral lessons or heroic victories, but a space where the full contradiction of existence with its beauty and cruelty, its vitality and decay, could be revealed and held. The tragic stage did not offer redemption. It offered recognition.

    I think of this often as a parent. How quickly we reach for structure, for narrative coherence, for control that might shield us from what feels unbearable. Even in our resistance to the medical gaze that reduces our children to diagnoses, we may build new facades crafted not of charts and probabilities, but of positivity mantras and curated joy.

    But our children do not live in tidy categories. They wail and tremble and laugh in the same hour. Their bodies resist the symmetry we’re taught to call health. Their lives, like all lives, are shaped by forces beyond their choosing. And still they are. Still they burn, brilliantly, if unevenly, and always gloriously.

    When we use tragedy as a purgative, we distance ourselves. We declare a life “less than,” and feel good for noticing. But when we use tragedy as an affirmation, we join. We admit the pain not as evidence of inferiority but as part of the fabric of living.

    So no, I don’t say her life is tragic because it is lesser.

    I say it is tragic because it is bigger than what the world knows how to hold.

    It is a life made of pain and joy, confusion and clarity, dependence and agency. It is not easily framed. It is not easily shared. But it is deeply and stubbornly real.

    And maybe that’s what tragedy gives us: not a reason, not a resolution, but a place to stand when the world makes no sense. A form big enough to carry what cannot be fixed. My daughter’s story is not only an inspiration. It is not an emotional cleanse. It is not a platform. It is a tragedy in the oldest, deepest sense.

    And I am here, in the wings, listening to her life ring out.

    Just letting it echo.

    Cheers,

    [kartoffelvater]

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  • A Different Planet

    On Epistemic Isolation in the Bureaucracy of Care

    Let me tell you about Wednesday.

    Just Wednesday of last week.1 I spent three hours on the phone, mostly on hold, listening to the same tinny muzak interrupted periodically by a robotic voice assuring me that my call was important. All while my daughter’s pulse ox alarmed in the background.

    The shrill beeping was like a smoke detector with a vendetta. I paced between her room and the kitchen, the call sent to my headphones so I could still use my hands, toggling between menus on my phone screen. When I finally reached a human voice, they asked me for my daughter’s birth date three times and then transferred me. Again.

    I was trying to resolve a denied claim for a medication my child needs daily. Denied because someone somewhere typed a wrong digit into a system. As I waited, I scrolled through emails, found two new forms to complete for durable medical equipment and a notice that our previous authorization for therapy was expiring. All this before I had even properly caffeinated myself for the day ahead.

    Does anyone else feel like they’re living in some parallel dimension2 when dealing with these systems? A dimension where time stretches and contracts unpredictably, where logic operates by different rules, and where the most fundamental human concerns like a child’s health or a family’s stability seem bizarrely abstract to the gatekeepers of resources?

    The Theater of Bureaucracy

    There’s something almost theatrical about these calls. They ask for a case number you were never given, or send an approval letter for a medication your doctor never requested but a denial for the one they did. It’s logistical whiplash. You know something about your child—deeply, bodily—and the system acts as if that knowledge is either irrelevant or incorrect.

    The experience reminds me of those philosophical terms I used to read3 and now live: epistemic isolation—a form of estrangement rooted not in how far apart we are, but in how and what we know.

    At some point, we became accidental experts. I can now differentiate between CPT and ICD-10 codes. I know the hold music of three major pharmacies by heart. These are not the kinds of facts I wanted to carry but I do, folded in with the weight of feeding schedules and seizure logs.

    The true irony is that this hard-won knowledge separates me further from those who should theoretically help us navigate these systems.

    I’ve had the surreal experience of explaining coverage policies to insurance representatives, citing specific provisions they seemed unaware existed. In gaining this expertise, I’ve become something of an alien, speaking a dialect that even the native bureaucrats find unfamiliar. The more we know, the harder it becomes to explain to others who don’t4 live this way.

    It’s like becoming bilingual in a language no one else speaks back.

    The Untranslatable Reality

    What’s harder to convey, what seems genuinely untranslatable, is the lived reality beneath these administrative struggles. There’s no box on the form for “I haven’t slept through the night in years.” No checkmark for “My daughter is nonverbal but lights up when she hears the sound of mama’s voice.”

    How do I explain to the clerk processing our application that I completed her forms while sitting on the bedroom floor monitoring her temperature? How do I convey to the insurance reviewer that the treatment they’ve deemed “not medically necessary” is the only thing that allowed my kid to laugh again after months of pain? What does “necessity” even mean to someone who’s never suctioned their child’s airway in the dead of the night? Who’s never watched the life drain slowly from their spouse’s eyes as they read another denial letter?

    Sometimes I imagine what our life looks like from the outside. A stack of labeled folders, a wall calendar peppered with acronyms. A father on speakerphone waiting for someone to believe him.

    What’s invisible is the tiny, precise tenderness required to keep our daughter safe: warming her formula to the exact degree, timing meds down to the minute, understanding the shift in her breath before a seizure.

    These are things you can’t write on a form. They are lived knowledge. A real, aching, daily dose of quiddity. But to the system, they’re noise. Background.

    Between Planets

    There’s a moment—maybe familiar—when you’re trying to explain, again, to a new person why your child needs something, and you realize: they’re not even on the same planet. Not metaphorically. Not emotionally. Epistemically.

    They don’t share your frame of reference. What feels urgent to you is procedural to them. What is survival to you is a policy to be followed. You’re not just misunderstood. You’re unknowable.

    I’ve watched friends’ eyes glaze over when I start explaining our latest administrative nightmare. I’ve endured well-meaning suggestions that betray a fundamental misunderstanding:

    • “Have you contacted your case manager?” (Only weekly for the past three years)
    • “There must be a program for that!” (There is; we don’t qualify for reasons that defy logic)
    • “Oh [so-and-so] had that happen to them, they just called and fix it right away!”
    • “Have you tried [insert some medication they heard about on a podcast]?”
    • “Remember to take care of yourself, you can’t pour from an empty cup!”

    Yeah, but you can’t fill a broken one, either.

    This kind of isolation is exhausting. It’s one thing to be unseen. It’s another to be seen inaccurately, again and again, by the very people you turn to for support. To have your reality mistranslated into metrics and platitudes.

    The Loneliness of Insight

    You start to notice things that at first blush seem like they should be wild conspiracies.

    Those of us parenting medically complex children see shadows on the wall5 that others don’t, or can’t, or won’t. Patterns in these sanguinary systems that become glaringly obvious once you’ve spent years entangled in them. We understand that policies labeled as “patient-centered” were clearly written without a single actual patient in the room. Procedures allegedly designed for efficiency primarily serve to ration resources through attrition and exhaustion. Paperwork is designed to stall. Denials come faster than approvals.

    At one point after our nth hospitalization for a particular illness, the Kartoffel finally qualified for a particular medical device. Exasperated, we asked a healthcare professional, “Surely it would be cheaper for insurance to provide the device preventatively, especially for a case like hers where the likelihood that she would need the device was just shy of definitively, instead of having to pay for multiple long hospital stays and the device anyway?” “No,” she responded, and explained to us that as counterintuitive as it seems insurance isn’t in the business of saving money, it is in the business of making money. And those are very different things. If they give you the device preventatively sure it saves them a little in the short run, but if they have to pay out for multiple hospitals stays and the device and most likely more hospital stays because they made you wait years and now your daughter is permanently compromised, then they get to raise premium for every single one of their members. Our stays and device costs them tens of thousands of dollars, but then they get to charge tens of millions more from everybody else.5

    Compliance over Care

    We see all this plainly, while others—even well-meaning professionals within these systems—seem to perceive only the official narratives about how things should work rather than how they actually do. Seeing these patterns doesn’t bring comfort. It makes the gap wider.

    There’s a specific hue of loneliness in this insight. It’s like being the only person who can see a color that lacks a name, trying desperately to describe it to a room full of people who insist it doesn’t exist.

    We are trying to navigate a system that was not made for us. Or maybe it was—and that’s the terrifying part.

    Finding Our Language Again

    There is a new grammar I’ve gathered from my years in this parallel dimension:

    • Document everything: conversations, who you spoke to, denials, approvals, hell even what hold music was playing.
    • Find allies within the system; there are compassionate individuals embedded in even the most heartless bureaucracies.
    • Develop a philosophical perspective that allows you to see these struggles as separate from your worth as a parent or your child’s value as a human being.
    • And when possible, step away from the paperwork long enough to remember why you’re fighting so hard in the first place—to see your child as more than a collection of diagnoses and needs.

    To this end I try to carve out moments to connect with the world beyond medical forms and insurance appeals. I read novels that have nothing to do with healthcare. I get outside as often as I can, finding in growing things a reminder that nature operates by different rules than human bureaucracies. I try, however imperfectly, to maintain friendships with people who know me as more than “parent of patient #487-29B.”

    Perhaps one day these systems will evolve to better reflect the realities of those they serve. Or perhaps one day these systems will be completely obliterated, and we will have to throw our baby out with the proverbial bathwater.6 Until then, we persist and become reluctant experts, finding community where we can. Other parents are out here—on hold, in waiting rooms, fighting the same fight. When I share these stories, they nod before I finish the sentence. There’s a brief exhale, a knowing look.

    And that’s the strange hope: our isolation isn’t unique. Which means it isn’t total.

    Sometimes connection begins not in acicular nature of answers, but in shared bewilderment. In hearing someone else say, “Yeah, it feels like a different planet to me, too.”

    And from a place within the mess we begin to find our language again. Language that doesn’t flatten our lives but stretches to hold their weight.

    Cheers,

    kartoffelvater

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    1. Honestly you could cover your eyes, throw a dart at a calendar, and you’d land on a day similar to this one. ↩︎
    2. Or in a dystopian novel, if you’ve spent any amount of time watching the news or reading the comments section. ↩︎
    3. This is going to happen a lot, but I understand that approximately zero of you signed up for a philosophy newsletter and rightfully so, those are awfully dull (; ). I’ll do my best to put the concepts into narratives, but every now and then a term or two is going to slip out. ↩︎
    4. And shouldn’t have to. No one should live this way; this isn’t a way of living it’s a simulation of simulated lives wrapped up in red tape. ↩︎
    5. I’m being cagey with some of the details on purpose (like the device, the illness, and the position of the healthcare professional) because I have a healthy distrust of people who are in the business of making money off of the suffering of children and don’t want the device taken away or the professional to be fired. Another family got this same device before a single hospitalization for (not) said illness, because again, it’s not about making sense, it’s about making money. ↩︎
    6. This post was not written in regard to a certain piece of recent legislature that has been much talked about in disability, and many other, communities (and anyone reading it as such is doing so of their own volition) but it easily could have been. One theory says all anxiety comes down to two base fears: separation and annihilation. This post deals with the former whereas to fully unwrap the reactions I see and feel about the bill I would need to explore the latter. Maybe next time. ↩︎