Our Little Kartoffel

Tag: faith

  • 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]

    Did this newsletter resonate with you? Reply with your thoughts or share your own story. And if you know someone who might need these words today, please forward this along.

    Every bit of support helps and we appreciate it more than words can say!

    Buy us some ground of despair

  • The Birth of a Tragedy

    (One of the many) Complicated Truths of Disability Parenting

    I reluctantly welcome the dawn.

    I am unsure whether facing the day would be easier than surviving the night. I watch it leaning over our kitchen sink while waiting for the kettle to boil, thinking about contradictions. How the same sky can hold both storm and sunbreak. How we can feel both crushed and lifted by the same moment. These tensions have been my quiet companions lately, teaching me that truth rarely arrives in neatly labeled packages.

    In about a month we will come up to our Pachyversary1 and so one of those tensions that have filled my mind recently is that surrounding tragedy.

    When Positivity Becomes Another Cage

    I used to post photographs of my daughter’s hospital stays with uplifting captions. I documented her medical procedures and framed them as challenges to overcome, moments of strength. I became fluent in the language of using whatever term was currently accepted as the term that might finally release our children from judgment.2 These terms became amulets against the darkness, against judgment, against what I feared to feel.

    What I never posted: her face contorted in pain that medication couldn’t touch. The way certain procedures made her body rigid with fear, eyes searching mine with questions I couldn’t answer. The medical trauma that doesn’t resolve into neat narratives of overcoming.

    It took years to understand that in my fight against a world that too easily dismisses disabled lives, I had become another system of control, one that policed how my daughter’s life could be perceived, even by me.

    By resisting ever viewing her life as a tragedy I had inadvertently reduced her in another way, by denying the profound reality of her suffering alongside her joy.

    This is the paradox many of us navigate as parents of disabled children. We can become the very forces we’re fighting against. In our desperate love and advocacy, we sometimes create new constraints around our children’s full humanity.

    What if we let our children’s lives be tragic, not to pity them, but to see them fully?

    The Digital Performance of Joy

    Scroll through any disability parenting forum, and you’ll see them—the mantras we whisper to ourselves and shout to the virtual world:

    • “My child is not a burden.”
    • “I choose joy.”
    • “We wouldn’t change a thing.”
    • “Our life is not a tragedy.“

    These phrases appear beneath hospital bed photos adorned with fairy lights, alongside videos of therapy breakthroughs, beneath milestones celebrated months or years later than expected. They are both shield and declaration.

    I understand why we reach for these words. They were born of necessity, crafted in response to generations of exclusion. They emerged from institutional hallways where children were hidden away, from genetic counseling sessions heavy with assumption, from playground sidelines where stares lingered too long.

    The digital landscape has amplified these voices of resistance. Instagram accounts showcase smiling children with feeding tubes decorated in whimsical patterns. Facebook groups celebrate adaptive equipment as extensions of personhood. TikTok videos set medical appointments to upbeat music.

    But beneath these sunlit stories, the shadows still pool. In private messages and quiet conversations, we sometimes confess the parts that don’t fit neatly into our public testimonies. The marriage straining under the weight of the decisions we have to make. The sibling who feels perpetually overlooked. The early morning moment when pain can’t be soothed and we find ourselves on the bathroom floor weeping from exhaustion.

    And yet even when we do share difficult moments, I’ve noticed they’re almost always framed: “The hard days make the good days worth it.” “Without the dark there would be no light.”

    In these formulations, suffering is permissible, but only as a means to joy.

    This asymmetry reveals that maybe we’ve internalized the very framework we’re fighting against. When suffering can only exist in relation to joy, but joy needs no such relationship to suffering, we inadvertently reinforce the idea that our children’s lives are fundamentally tragic unless actively redeemed.

    To be clear: the resistance remains vital. The world still needs reminding that disability does not negate personhood, worth, or quality of life. But perhaps there is room for a more expansive truth, one that doesn’t require us to choose between tragedy and triumph, between acknowledging suffering and celebrating joy.

    And perhaps we can look to our children themselves, who so often inhabit this paradox with more grace than we do. They live what what we sometimes forget—that acknowledging pain doesn’t diminish the capacity for joy, that suffering and meaning can occupy the same space.

    Finding Wisdom in Tragedy

    There’s research I encountered years ago, and used frequently in my practice, long before I became a father. Studies showed that positive affirmations like “I’m a good person!” work wonderfully…just as long as we don’t actually need them. The cruel irony is that when we truly need affirmation, when we’re genuinely struggling with negative feelings about ourselves, these forced positive statements can actually make us feel and function worse.3 The research suggests that if the purpose of any coping strategy is to avoid feeling a challenging emotion or thinking an upsetting thought, to wipe out a painful memory or look away from a difficult circumstance, in the long run, the results will very likely be poor. In fact, these coping strategies have been shown to actually trigger the very negative emotions they are trying to inhibit!

    I see this dynamic play out in disability parenting circles. Mantras such as “Our life is not a tragedy,” and “We wouldn’t change a thing,” function beautifully when we’re already feeling (at least mostly) secure in our choices and circumstances. But when we’re drowning in medical debt, when our relationships are strained to breaking, when we haven’t slept more than two consecutive hours in months, these statements can become another burden, another standard against which we measure ourselves and find ourselves wanting.4

    Psychological rigidity (that desperate clinging to a single narrative) predicts anxiety, depression, trauma responses, and numerous other struggles.5 It undermines our ability to learn, to connect, and to adapt to changing circumstances. Research has shown that people who allow themselves to fully experience horror during traumatic events often develop less severe trauma symptoms than those determined not to be horrified by the same experience. There’s something about allowing the full truth of our experience—whatever it is—that creates resilience, not in spite of acknowledging difficulty, but because of it.

    I wonder sometimes if our disability parenting community’s positivity mantras, though born of necessary resistance, might function similarly. There isn’t direct research on this specific phenomenon, but the parallels are compelling. When we insist “This isn’t tragic” in moments that contain genuine tragedy, are we creating the very psychological rigidity that makes us more vulnerable, not less? When we rush to frame every obstacle as a blessing6 in disguise, are we inadvertently telling our children that their suffering must be justified to be acknowledged?

    People who experience suffering as a result of their child—whether disabled or not—often feel guilty for naming it as such. Over time, that guilt calcifies into shame, as if acknowledging their own suffering somehow diminishes their love.

    To say “this hurts” feels dangerously close to saying “I wish my child were different.”

    But being open to the tragic vision isn’t choosing suffering over joy. It is the recognition that you can love your child regardless of whether the result is suffering or joy.7

    Embracing the Tragic Vision

    There was a day last summer when my daughter was admitted to the hospital for the third time in two months, I sat in the impossibly heavy vinyl chair, held her hand through the side rails, and allowed myself to think: This is not what I wanted for her. This suffering serves no purpose. This is, in some fundamental way, tragic.

    And something shifted. In allowing the tragic to exist without transformation, I saw my daughter more clearly than I had in the endless years of positive reframing. I saw her not as a symbol of resilience or as a challenge to the system, but as herself, as a person experiencing something difficult without narrative obligation. Of course, she is resilient, and she does challenge the system, but through no insistence of mine.

    This is what Nietzsche8 understood about tragedy that we sometimes forget: it doesn’t reduce the human to a single dimension of suffering. Rather, it expands our vision to include the full spectrum of experience without hierarchy, without insisting that one aspect justify or redeem another.

    There is liberation in this kind of seeing. When I allow space for the tragic alongside joy, I free myself from the exhausting work of this constant reframing.

    I free my daughter from being the protagonist of an inspiration narrative she never consented to.

    Last November, we went to the beach. One of her favorite places despite the sensory challenges. The day held everything: moments when the texture of sand caused distress, moments when the sound of waves made her body rigid with tension. It also held moments of pure delight with her face breaking into unguarded joy as the sea breeze kissed her cheeks.

    In one particular moment she was lingering between laughing and crying, her eyes welling with tears even as her mouth curves upward. I didn’t take a photo of it. Its message would get misconstrued on an inspiration page. It doesn’t tell a clean story.

    But it tells a true one. In that complex and contradictory truth, a truth stubbornly resistant to simple narratives, I find something far more valuable than comfort.

    I find my daughter, complete.

    I’m not intending to deny joy its own place, but the inspirational joy narrative has enough voices championing it. I’m also not trying to romanticize suffering. I don’t think we need to love our suffering but rather more fully love those that are suffering.

    The tragic vision offers us a widening of perspective. Not a surrender to darkness, but a more honest relationship with light. It offers the possibility that we might love our children not despite the full complexity of their lives, but because of it.

    It’s not that joy and suffering can coexist because you’ve decided to let them, it’s that they already do coexist and all you have to decide is whether you’re willing to stop sacrificing one trying to chase the other.

    Cheers,

    [kartoffelvater]

    Did this newsletter resonate with you? Reply with your thoughts or share your own story. And if you know someone who might need these words today, please forward this along.

    Buy us some Trage-tea!

    Every bit of support helps and we appreciate it more than words can say!

    1. This is what we call the date she received her diagnosis. It’s a cute name we give to one of our darker moments in the hopes that it will make the memories easier to live through. It’s doesn’t really work. ↩︎
    2. The storied history of what society calls its disabled members is long, cyclical, often cruel, and absolutely not going to be explained in the footnote of a newsletter. The search for and inevitable enforcement of the ‘right’ term is often more tragic than the term itself and speaks to the heart of the Apollonian/Dionysian conflict that I touch on in this post, which will also absolutely not be able to explain in a footnote. You’ll just have to read the book when it comes out. ↩︎
    3. Wood, J. V., Perunovic, W. Q. E., & Lee, J. W. (2009). Positive self-statements: Power for some, peril for others. Psychological Science, 20, 860–866. Not free, I’m sorry. The pay-walling of knowledge makes me at times weep peer-reviewed tears. Get one of your academic friends to use their library access for you. ↩︎
    4. That pit you get in your stomach when you realize you haven’t seen a parenting friend in your feed for a while is something unique to the disability community. I know because I’ve asked. Every time I’ve asked someone outside of the community what they think when they haven’t seen a lot of activity from a friend on social media the response is something along the lines of, “They’re just taking a break,” “They’re working on themselves,” or some other indicator that they are otherwise not worried about them. When I ask the same thing of other parents of medically complex kiddos the response is always, “Something’s wrong.” ↩︎
    5. There are quite literally tens of thousands of articles published about this, with more being published every week. If you are curious (or skeptical!) I suggest searching “psychological flexibility” or “experiential avoidance” or “acceptance and commitment”. Here’s one you can read for free from just a few years ago that shows a balanced approach. ↩︎
    6. It’s ‘The obstacle is the way,’ not ‘The obstacle is a blessing.’ StoicBros come at me. No, really, I’d love to discuss. ↩︎
    7. Quiet shout out to those who, while wishing to remain anonymous, have lent me their eyes and ears while writing on this sensitive topic. ↩︎
    8. This was originally a much longer essay with an entire section dedicated to historical and literary understandings of ‘tragedy’ with particular interest in Nietzsche’s The Birth of Tragedy and how it contrasted with Aristotle’s Poetics in our understanding of the function of tragic art, see footnote 2. I’ve been listening to y’all though and the feedback is telling me these newsletters are already too long. If you’d still like it I can make it a separate post, or again, you’ll have to wait for the book (this might not make it until the second book though). ↩︎