Our Little Kartoffel

Author: the author

  • 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

    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.

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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. ↩︎

  • The Notebook

    On loving a child who exists outside the margins of medical documentation

    Hallo Kartoffelkumpel,

    There’s a flamingo-covered notebook sitting on my shelf. You might have seen it if you’ve been to our house, its spine cracked, tabs sticking out, surface scratched from countless journeys into doctors’ offices and therapy sessions. It contains the “official” story of the Kartoffel: diagnoses typed in sterile fonts, test results graphed in black and white, medication schedules in neat columns.

    Pages of acronyms and numbers that claim to map the terrain of her existence. But this notebook, with all its information, is only a fragment. A map that leaves out the rivers, the forests, the sky.

    A map that misses the wonder of her.

    The Invisible Cartography of Care

    I’ve memorized every page of this notebook, can flip through it in my mind during those quiet nights when the house is silent except for the constant companion that is her feeding pump. Each page is a frozen moment. A neurologist’s scribble here, a list of questions to ask for next visit there, a therapist’s home program taped to the back, hospital discharge summaries folded roughly between pages, ID bracelets from past stays that we use as bookmarks.

    These pages don’t just contain words, they contain entire rooms. Fluorescent lights buzzing overhead. The antiseptic smell clinging to clothes. The Kartoffel’s small body on examination tables while voices discuss her as if she were a puzzle to be solved1.

    The notebook is necessary, indispensable even, but it is not her. It does not record the sound of her laugh, a soft gurgle that bubbles up when I tickle her foot. It does not chart the way her eyes, deep and searching, seem to hold a question no one can answer. It does not measure the weight of her head against my shoulder, or the rhythm of her dreams.

    What is a diagnosis, anyway? A word, a category, a shorthand for something vast and unknowable. Pachygyria: a brain that folded too smoothly in the womb, its ridges and valleys too few. Lennox–Gastaut: a cacophony of storms that surge without warning. Quadriplegia: a body that does not move as the world expects. A plethora of others. These are truths, but they are not the whole truth. They are like leaves that have drifted down into a pond, sending ripples outward but never touching the depths.

    Living in the Gap

    There is an existential ache in this gap between the notebook and the truth. To live with a child like the Kartoffel is to straddle two worlds: the world of systems, hospitals, insurance forms, appointment schedules; and the world of the ineffable2, where love and grief and beauty collide.

    The tension is constant, a low current beneath every decision, every day. It is not a tension that resolves, nor am I eagerly trying to force some resolution3. It simply is a fundamental part of living.

    I used to talk to her about the notebook, holding up its many-turned pages that seemed to be desperately trying to escape. “This is what they think they know about you, babygirl.” She’d look at me the way she always looks at me, with that steady gaze that seems to say:

    “How dare you speak to me.”

    -the Kartoffel

    Does she know these pages are a kind of love too? That they are the scaffolding we build to keep her safe in a world that doesn’t always make room for her? Or does she sense only the weight of it, the way it pulls us into rooms where her voice—her real voice, unspoken but profound—is drowned out by jargon?

    I want to tell her that the notebook is not her story. That her story is written in the way she leans into mama’s voice, in the way her hand twitches when she hears the birds4 outside. But I don’t know how to say it. So I sing to her instead. Her breath softens and, for a moment, the notebook is just a thing on a shelf, irrelevant.

    Of Knowing and Naming

    There’s a deeper question here that cuts through the practicalities of caregiving:

    What does it mean to know a person?

    The notebook claims to know Kartoffel, to define her through careful documentation. But knowing is not the same as naming. To name something is to pin it to the setting board5, make it static. To know someone is to move with them, to dwell in their mystery, to accept that they will always exceed your grasp.

    The notebook names the Kartoffel. I am trying to know her. And in that trying, I am learning to live with uncertainty, with the vastness of what cannot be contained.

    This is not a heroic realization. It is not a moment of triumph or clarity. It is an ongoing reckoning, one that unfolds in the small rituals of our days. Wiping her face after a sneeze. Adjusting her chair so the light falls just right. Pushing her wheelchair around a car that decided to block the sidewalk. Her constant look of disappointment in my fashion choices6.

    These acts aren’t recorded in the notebook, but they are where our life actually happens. Where I meet her not as a diagnosis but as a person, singular and unrepeatable. They are where I confront the limits of my own understanding, and where I find, again and again, that love is not about mastering those limits but about living within them.

    The Persistent Beauty of the Uncharted

    The notebook will always be there, it has already spilled into other notebooks, binders, whole filing systems7. It and its cousins will continue to shape our days, dictating appointments and treatments and the endless paperwork of caregiving.

    But it will never be enough. It will never hold the way the Kartoffel’s presence fills a room, or the way her silence speaks louder than any report. It will never capture the absurd, tender, disorienting texture of our life together. The grief that catches in my throat when I least expect it, or the grace that arrives in the curve of her hand against mine, or the stubborn beauty of the city tree outside, its leaves trembling in the wind.

    In my mind, I close the notebook now, its flamingo’d cover cool under my fingers. The room is dark, save for the soft glow of a plug-in fly trap8 across the room. The Kartoffel sleeps, her chest rising and falling in a rhythm older than words.

    I think about the notebooks of other families, other lives, each one a partial map of something vast and uncharted. You’ve probably got one, or seven, on a shelf right now.

    I don’t have answers to the big questions. Maybe they are in the notebook?
    Probably not.

    For now, I’ll read my books, pour over my maps, but I’m going to keep getting to know the Kartoffel.

    Jot this down in your notebook: be well, stay gentle, and keep curiosity close.

    Happy writing,
    [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.

    We wouldn’t be here without you. Every bit of support helps and we appreciate it more than words can say!

    Buy us a notebook!

    1. I have thought on more than one occasion that were I to be on the table like that I would very much feel like a specimen in an entomologist’s lab. There is much about her life that is Kafkaesque. ↩︎
    2. Ineffable and yet I can’t seem to stop throwing language at the wall of her life and seeing what sticks, the absurdity isn’t lost on me. It’s a wonder of language that we can, and will, identify things that can’t be expressed in words by expressing them in words. The way language has to snake around itself until you are all in knots is ever-present when trying to describe a reality like the Kartoffel’s. I will probably have to find some words to express this… ↩︎
    3. Who am I kidding of course I am, but less and less. Especially with the growing realization that the tension will only truly resolve at her end. ↩︎
    4. Those darn Greek Cheek parrots. Trust me, your hand would twitch, too. ↩︎
    5. Ah, there’s that entomological analogy again. We recently had a run in with a particularly aggressive member of the Blattidae family and it must have nestled into my psyche while writing this. ↩︎
    6. Just this past Friday she told me with her eye gaze device that she didn’t like how I did her hair, she described it as, ‘awful.’ Or maybe she was saying I was awful. Unclear. I’ll talk more about the device soon. ↩︎
    7. Shout out to MyMejo for helping to cut down on the clutter and communicate clearly. This is not a sponsered ad, I just think Ryan is a cool dude doing good work and his app is straight dripping fire, as my students would say. ↩︎
    8. It works very well as a nightlight, and sometimes catches flies and mosquitos too. I, again, don’t have a link for you, you’ll just have to visit and see for yourself. ↩︎

  • Let’s Walk For Awhile

    A beginning. An introduction. A few words for those who’ve found their way here.

    Hallo Kartoffelkumpel,

    Thank you for coming back, or for finding your way here for the first time. However you arrived—I’m so glad you’re here.

    In addition to our Sunday newsletter, today also happens to be Father’s Day. And so for the dads who are borrowing normalcy today, those that are the still point of their turning world, I wish you the quiet recognition that you are the father your child need. Not despite the complexity, but because of how you’ve learned to love within it.

    “There are years that ask questions and years that answer.”

    — Zora Neale Hurston

    The Sidewalk and the Canopy

    We’re walking down the sidewalk again. Me, pushing the wheelchair; her, staring up into the canopy of a plumeria tree that’s doing its best to belong in this suburban stretch of fake lawn and curb. Its waxy leaves catch the late light and shiver just a little in the breeze. She lifts her eyes, slow, shaky and unsure, and they hover for a bit, like a question.

    I talk to her more than I talk to anyone else. Maybe it’s to fill the silence, maybe it’s habit. Early on, we were told to give her near-constant stimulation—that our voices, especially, would be some of the best therapy. So I’ve made her a steady diet of words: some real, some invented, many of them now returning to me, reshaped, to be written here. Half-conversations, metaphors, guesses. Things she might have thought.

    I say things I need to hear out loud to believe.

    The Kartoffel is not her real name, but that’s what we call her. Our little potato. The nickname arrived early, during a time when we didn’t yet know the full shape of things. She was soft and round and warm and wordless11. She still is, though the wordless part cuts differently now.

    She has more diagnoses than you can fit into a carry-on bag but the primary diagnosis called is pachygyria2—an uncommon disorder in which the folds of the brain are too broad and too few. Her body is organized by a different logic, one the world rarely bothers to learn.

    This Is for Her (and for You)

    This newsletter, like everything anyone has ever written about anything, is about its author: me. But it is for her. Not because she’ll read it or be inspired by it, she likely won’t and wouldn’t be. It’s for her because writing it helps me become a fuller person, and by knowing more of myself, I can give more of myself to her. In that sense, it’s also for anyone else who has found themselves walking streets like these: parents of disabled children, caregivers, family members, medical professionals, friends trying to stay close without knowing what to say.

    I don’t have advice, not really. I’m not here to offer inspiration or resolution. I’m not documenting a triumph. I’m trying to pay attention.

    There are already so many places to get tips, tricks, and hacks—entire ecosystems of advice for caregiving, disability parenting, navigating the medical maze. Some of it is deeply helpful. Some of it, less so. But that’s not what this is. I wouldn’t know how to package our life into a five-step guide, even if I wanted to. The truth is, most of what we do doesn’t map neatly onto anything. It’s improvised, negotiated, constantly reworked in the moment. And what works one week might collapse the next. We live by rhythms more than rules.

    Besides, I suspect you’re already carrying more advice than you can use. And not just the kind that arrives in pamphlets or protocols—but the well-meaning suggestions from strangers, the quiet judgments hiding in questions, the impossible expectations you’ve internalized just to keep going.

    So no, this isn’t that.

    But that doesn’t mean I’m not interested in you, or your child, or your days. It doesn’t mean I don’t want to talk, or listen. I just have to start from a different place. Because everything we read, we rewrite—we reconstruct it through the prism of our own experience, whether we mean to or not3. Nothing arrives whole and untouched. So instead of giving advice, I try to give attention. I offer what’s been real for us, with the full knowledge that it won’t be quite the same for you.

    If you do write to me, I’ll do my best to answer—but always with this in mind: that what I can offer is not a solution, but a reflection. Not a map, but maybe a stone you can carry in your pocket, run your thumb across, and decide for yourself what it means. Writing these thoughts out has changed me. I hope—in some small way—that change might be for your good, too.

    Too Many Lights

    We have been on our journey with the Kartoffel for more than 8 years now. It was hard at the beginning, but you know what?

    It is still hard now.

    In the early days, we were desperate to find a community—anyone who might understand even a sliver of what we were going through after her rare diagnosis. We cast our net wide, reaching out, posting, joining, hoping to be seen, to belong. And we did find people—some of the best people—and I hope we became that for others too.

    But these days, the impulse has changed. It’s less about gathering anyone who might listen, and more about listening inward, writing from the quiet center rather than toward the noisy edge. This space isn’t meant to rally or convince.

    Nor will it be a source for specific updates about the Kartoffel’s condition.

    One of the tensions I carry is wanting the world to know her—the real her—and yet also wanting to protect her from being laid bare under a thousand curious glances. I believe it’s possible to care deeply for someone without needing to see every corner of their life. This is a tension I’m still working out, and one I’ll return to in this space, probably more than once.

    If a particular facet of her medical state fits in with a given reflection I’m writing I will include it as respectfully as my ability will allow. But if you are here just to see photos of the Kartoffel and get a play-by-play of her life, I’m afraid you will find yourself disappointed. As I said, this is for her, but about me.

    If this evokes in you a strong desire to find the unsubscribe button, you would be in good company; the Kartoffel would unsubscribe from hearing me if she could. But I hope you’ll stay.

    Staying with the Texture

    So instead of offering conclusions or putting her on display, I return to what I can and want to do: Be near her, watch closely, and try to name things honestly.

    Some days I think that’s all I’m doing: noticing the world with her, and trying to find language that doesn’t betray it. Because there is a texture to this life that resists simple meaning. There are missed appointments and bruised hopes and long waits on hold with insurance. There are nights full of seizures, and mornings where everything still smells like vanilla formula that spilled everywhere as I load the wheelchair and try again. There is hard, yes. But also soft. And awe. And absurdity.

    And quiet grief housed within ordinary joy.

    It’s no coincidence I’m sending this out on Father’s Day. I frequently hear that dads are the less visible parent (at least on social media) but the truth is more complicated, especially in the disability community. Perhaps because we live in a culture where the concept of ‘dad’ ranges from the comical to the contemptible4, perhaps because of the expectation that we must hold to the polite fiction of shared experiences, perhaps because my preconceptions about being a dad have been completely demolished by actually being a dad…perhaps for these reasons, or a million others, I’ve been thinking a lot about what the word father really holds, and how little space there often seems to be for its fuller shape. I mentioned earlier that while this newsletter is for her but about me, and that means fatherhood will show up here quite a bit.

    There’s no single story here though. In addition to fatherhood I’ll be writing about disability, the moral fog of systems, the awkward kindness of strangers, and the bizarrely durable rituals that make up a day. There will be some theory, some beauty, and hopefully some moments that feel familiar in the deepest sense. I don’t promise to always make sense of things, but I do promise not to look away.

    I don’t know if this is a question year or an answer year. But either way, I’m asking and listening. You’ve found your way here, welcome. Let’s walk for a while.

    Until next time, be well, stay gentle, and keep curiosity close.

    Grateful for you,
    [kartoffelvater]

    1. Plus, all of the potato-based nicknames are adorable: Tater-tot, Small Fry, Sweet Potato, Murphy…
      We also call her a myriad of nicknames based on whatever activity we are doing but there are so many that they might warrant their own post. ↩︎
    2. Diagnoses are a funny thing (not funny ha-ha, not funny like a clown). Sometimes they refer to a noumenological feature, sometimes to a reified object in and of itself, and at other times a qualifier of another distinct artifact of reality. Pachygyria is no different. This is a confound worth exploring on it’s own. ↩︎
    3. Understanding may not be something we receive, but something we remake. This would then influence not only how we understand things in the moment, but how we remember them later, and then ultimately how we pass those memories off as advice and how we evaluate others within this self-made framework. I’ll come back to that in another piece, probably about the super-not-boring sounding topic of hermeneutic cognition. ↩︎
    4. There is an entire style of humor named after dads, which comes with the not-always-funny reality that a) dads like to joke but also b) dads often are treated as a joke. ↩︎

  • Our Little Kartoffel

    Words about fatherhood, grief, wonder, and the work of paying attention.

    Hallo Kartoffelkumpel,

    Thank you for being here.
    If you subscribed yourself then you know why you are here. If you stumbled here or are receiving this email through means not your own, welcome!
    I hope you’ll stay. Here’s what’s going on…

    This is our new blogish newsletter called Our Little Kartoffel.

    Why Our Little Kartoffel? Because some truths, like potatoes, thrive best when rooted deeply in their own soil. And this space is that soil. It’s where I’ll be cultivating the particular kind of attention I’ve learned to give to life as a father.

    It’s also named after our daughter—the Kartoffel is our nickname for her. For those who don’t know, she’s medically complex and profoundly disabled. She’s also full of mystery and stubborn beauty. Most days, we walk the same loop through the neighborhood, passing the same trees, exchanging the same glances.

    I talk to her the whole time. Some of those words are going to find their way here.

    This place won’t be about finding answers or giving advice, and it’s not advocacy (at least not in the traditional sense, we’ll probably discuss that here at some point). It’s a slow, lyrical exploration of care, grief, and wonder. It’s about the relentless, messy, profound, and often disorienting work of seeing life as it is, and what might be waiting in the silence that follows.

    We’ll lean into the questions without always needing resolutions. We’ll explore the tender seams where systems fray and where human connection mends. And yes, sometimes, we’ll tread into spaces that are rarely spoken of, or even a little uncomfortable. Because true paying attention often demands that.

    Tone and style will vary, I have a history of experimenting with my writing and frequently I have more to say than would fit in a sentence.* But if you like writing that’s thoughtful, emotionally honest, and grounded in the everyday, if you understand the strange alchemy of care, if you’ve resonated with my reflections before, then this space is for you.

    I’d be honored if you’d walk along with us. Until then, be well, stay gentle, and keep curious.

    Someone out here is grateful for you,
    [kartoffelvater]

    *This will frequently lead to me adding footnotes. Posts will be written in such a way that you do not have to read the footnotes, but rather they are there as fun and funky fresh bonus content. Free. For you. No subscription required. You are welcome.

    In this and subsequent newsletters then, a footnote will refer the reader to the bottom of the page for some immediate clarification, personal comment, joke, or other digression. Although the posts are generally not meant to be taken as academic works, there may be a citation or link for further reading.

    Oh no, first post and I’m already using footnotes? This newsletter is going to be a journey…