I don’t say it. Not because I’m ungrateful, simply because it’s not true. Or at least, it’s not my full truth.

A second chance implies a first one got taken from me. It implies there was a version of my life where I was supposed to just live normally, then disease stole it, and transplant handed it back.

That’s not what happened. That’s not even close to what happened.

At 18 months old, I was diagnosed with X-linked Alport Syndrome; a rare genetic disease caused by mutations in the COL4A gene.

I was told, from a young age, that I would most likely need a transplant- estimated in my teen years. Yet nobody educated me on what dialysis actually was or what modality options were available to me. Nobody walked me through what transplant would really mean. That’s its own piece, its own rage, for another day. The core fact stands underneath all of it: this was never a detour from my life. This has always been my life, from the very beginning.

I didn’t lose a first chance. I never had the version of a life this culture assumes is everyone’s default- a body that just works, indefinitely, until something tragic interrupts it. My body was always going to need this.

So why does “second chance at life” slightly bother me, beyond just being inaccurate?

Because it flattens the whole story into a before-and-after. Sick, then saved. Broke, then fixed. It erases years of managing Chronic Kidney Disease (CKD) as a kid. It erases whatever happened in the gap between diagnosis and transplant- the dialysis, the waiting, the grief nobody prepared me for and nobody knows how to hold space for. It hands the public a clean redemption arc so they don’t have to sit with the actual complexity of chronic illness, genetic disease, or what it costs to keep a body alive. And the soul inside it thriving.

It also quietly implies the pre-transplant version of me was a lesser life. Less complete. Waiting to become real. I refuse that. I was living my purpose and my passions before transplant too- just inside a body doing something different than the one I have now.

What transplant actually gave me isn’t a second chance. It’s a continuation. The gift of another person’s organ- freely given- is what allows me to keep walking the same path I was already on. Not a new path. The same one, still unraveling.

I don’t need my story to be a redemption arc to be worth telling. It was always worth telling. Even in the chair. Even on the list. Even now.

We’re in a moment where “wellness” is being watered down into nervous system hacks, pseudoscience, and influencers promising that affirmations and the right supplement stack can heal anything.

Meanwhile, people with real diagnoses- the kind with lab values and imaging and a name in a textbook- are left feeling shamed. Misled. Invisible.

I watch it happen in real time. Someone posts their protocol. Someone else in the comments, sicker than they’ve ever let themselves say out loud, wonders what’s wrong with them for still needing an organ transplant instead of a tincture.

Allow me to share the reality I actually live in, not the one that trends on social media…

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A stranger walks toward you. Gloved hands reaching for the most tender, most exposed part of your chest or your arm. You cannot move. You cannot leave. Your life depends on staying in that chair for the next four hours while they do it anyway.

We call this “routine care.” We chart it, we schedule it, we say “just a normal treatment day” like your body isn’t screaming underneath the blanket.

I know what that scream sounds like. Because it started for me the very first week.

🌿 I’m Taiylor — aka Taiy, sometimes Fern.

Diagnosed with Alport Syndrome. Former dialysis patient. Kidney transplant recipient. Yoga instructor. Integrative health practitioner. Patient advocate & educator.

I bridge Western medicine and Eastern practice, clinical systems and spiritual philosophy because I’ve had to live inside all of it just to survive.

The rest of this isnt easy to read. Neither was living it.

I crashed into dialysis. Like most ESRD (End Stage Renal Disease) patients do.

I have managed CKD (Chronic Kidney Disease) my entire life. Diagnosed with X-linked Alport syndrome at eighteen months old. A lifetime of labs, of specialists, of a body being monitored.

Nobody educated me on dialysis. Nobody educated me on transplant.

I slipped through the cracks of a system that had every opportunity to catch me. That’s not my fault. That’s the system’s.

We trust our care teams. That’s the deal. We hand over our bodies and we trust the people holding them.

And I still crashed into dialysis anyway.

Started in the hospital. Permacath in my chest. Replaced it before discharge. Forty minutes home- that’s all we made it. Forty minutes before we had to turn the car around and drive straight back to the ER, because my catheter was bleeding through everything.

The trauma nurse said it out loud. She’d never seen a dialysis catheter before.

That sentence landed in my body before it landed in my brain. My nervous system heard it first. On edge. Not wanting her hands anywhere near me. Not trusting the hands that were about to touch me anyway.

They unbuttoned me completely. Breast out, for anyone walking by to see. Fully exposed. And the solution was gauze. Compression wrap. Go home. Go to sleep. The clinic will clean you up tomorrow.

Two hours in that clinic chair the next day. Tape and dried blood, peeled slowly off skin that was already sore, already tender, already screaming to be left alone.

That was the start of my journey. Traumatic, from the very first week.

Pictured here is my Presternal Peritoneal Dialysis Catheter and Central Venous Hemodialysis PermCath

Every time someone enters your personal space to access your catheter, clean your fistula, adjust your lines- your nervous system doesn’t know the difference between care and threat. It just knows someone is touching me somewhere tender. Again.

We don’t talk about this. We need to.

I’ve stood in front of nephrologists, social workers, dietitians, techs, clinic managers. When I introduce the concept of trauma and nervous system response in the dialysis chair, the room goes quiet. Then something shifts.

“I never thought about that.” “That explains so much about my patients.”

Every single time.

That patient who flinches. Who goes quiet. Who won’t make eye contact during access. Who seems “difficult” or “non-compliant.”

She’s not being difficult. Her nervous system is doing exactly what nervous systems do.

Trauma-informed dialysis care isn’t a luxury. It isn’t a bonus. It is the baseline. And right now, most clinics aren’t there yet.

I’m not a speaker or advocate standing outside this world telling you what to do.

I was the patient in that chair. I am the woman whose catheter bled through a forty-minute drive home; soaking my clothes, dripping down my sides. I am the person whose nervous system remembers all of it.

And I’ve dedicated my work to making sure care teams have the language, the lens, and the tools to do better.

Clinicians- has this shown up in your chair and you didn’t have the language for it yet?

Patients- did anyone ever ask you how it felt to be touched like that? Or ask for consent before doing so?

Tell me below.

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If you know a nephrologist, tech, or social worker who needs to reads this- restack this. This is how the room starts to shift; how we move the needle.

I was standing in my bathroom, leaning over the sink, blood pouring from my nose with no end in sight. No clotting, just blood.

My boyfriend, now my husband, appeared in the doorway and asked the simplest question in the world.

Are you okay?

And for the first time in my life, after years of blood draws and urine samples and nephrology appointments and medications and clinical studies and quietly, invisibly managing something most people don’t think about until it’s too late, I finally said the truth out loud.

No. I’m not.

I was 18 months old when I was diagnosed with Alport Syndrome. I have been a kidney patient my entire life. Before I understood what kidneys were. Before I knew what they did. Before I could pronounce the name of the disease living inside my DNA.

This is not a story about a diagnosis. It is a story about a life.

Growing up, it was just my normal.

Blood work, urine tests, 24 hour urine samples, 24 hour blood pressure studies,clinical trials, leaving school early for nephrology appointments in the city, taking blood pressure medication starting at the age of 8.

Eight years old. A backpack, a lunchbox, and a prescription.

The other kids didn’t know. How could they? There was nothing to see. Alport Syndrome is a silent disease; it lives in the kidneys in the hearing, in the eyes, but it does not announce itself. Same goes for a lot of genetic conditions that present themselves as Chronic Kidney Disease. It does not ask for accommodations or explanations. It just exists, quietly, underneath everything.

Until high school, when I had to wear a uniform and also had to complete a 24 hour blood pressure study. A BP cuff hidden under my sleeve. A loud machine tucked into the small pocket of my uniform skirt, buzzing and vibrating every 30 minutes throughout the school day.

Every 30 minutes. A reminder. You are not the same as everyone else in this room. You never have been.

But I kept going. Because that is what you do when something has always been your reality. You normalize it. You manage it. You carry it quietly and you keep going.

Invisible illnesses have a way of becoming very visible all at once.

The nosebleeds were a sign I didn’t want to read. My body speaking a language I had spent a lifetime learning to ignore. I knew what was coming. Instinctively, somewhere underneath the resistance, I knew it was time to face dialysis.

I was terrified.

So I resisted. The way you resist the thing you know is true but are not ready to say out loud. The way I had said I’m fine for years when the honest answer was something else entirely.

And then one morning- 5am, pouring rain- I woke up to an ambulance outside my house.

My bloodwork had come back. My doctor was concerned I wouldn’t make it through the night.

That is what silent looks like when it finally speaks.

Dialysis changes you.

Not just physically, though it does that too. It is the experience of watching all of the blood leave your body, cycle through a machine, and return to you. over and over. Tethered. Dependent. Kept alive by something external because the organs you were born with can longer do it alone.

There is nothing abstract about that. It is the most visceral, undeniable reminder that your body is not working the way bodies are supposed to work. The invisibility is gone. You are now a patient in every visible, measurable, impossible-to-ignore sense of the word.

You become a number in the data. A statistic in the research. A case in the file.

And you are also still a person; a full, complex, feeling person- trying to hold onto yourself inside all of it.

I received a kidney transplant on May 10, 2023. And with it came a new chapter; one filled with its own battles, its own losses, its own reckonings. A transplant is not a finish line. It is a continuation. A new set of terms for the same lifelong relationship between me and my health.

I have always been and will always be a kidney patient.

And that reality has made me a patient of many other things as well.

Today is World Kidney Day. March is National Kidney Month.

Every year, the campaigns share statistics. Numbers. Infographics. And the numbers are real- kidney disease affects 1 in 10 people globally, and millions dont know it yet. Because kidney disease is quiet. Because it doesn’t always hurt. Because by the time most people find out, significant damage has already been done.

So I want to say this as directly as I know how:

Get your bloodwork done. Annually. No exceptions.

If you have high blood pressure, get it checked and take it seriously. If you struggle with blood sugar, know that your kidneys are paying attention even when you aren’t. These are not abstract risk factors. They are the quiet language your body speaks before the ambulance arrives at 5am in the pouring rain.

Your organs are working for you every single second of every single day. The very least we can do is check in on them.

And if you are reading this and you or your child has just been diagnosed with Alport Syndrome- I want you to hear this specifically:

I was diagnosed in 2000. Before the Alport Syndrome Foundation existed. Before there were Facebook support groups or Alport Connect events or the kind of community and clinical innovation that exists today. I grew up without a roadmap. Without people who looked like my future and had survived it.

You don’t have to do that.

The Alport Syndrome Foundation exists now. The community exists. The researchers and nephrologists who have dedicated their lives to understanding this disease exist, and they want to meet you. Join the support groups. Attend the events. Learn from the professionals. Ask the questions I didn’t know I was allowed to ask.

You are not alone in this.

I have spent my entire life carrying something most people couldn’t see.

And on World Kidney Day, what I most want to leave you with is not a statistic or an awareness ribbon. It’s this:

Pay attention to your body. Not just when it is loud. Especially when it is quiet.

The quiet is where kidney disease lives. The quiet is where it does its work. And the quiet is where- with annual bloodwork, with honest conversations with your doctor, with community and knowledge and the refusal to normalize something that deserves your attention- you have the chance to change the story before the story changes you.

I didn’t get that chance. But you might.

And that is why I’m telling you mine.

World Kidney Day is observed annually on the second Thursday of March. March is National Kidney Month.

For those diagnosed with Alport Syndrome: visit the Alport Syndrome Foundation at alportsyndrome.org and connect with the community at Alport Connect.

To understand your kidney health: ask your doctor for a comprehensive metabolic panel (CMP) and urine albumin test at your next annual visit.

With Love - TMKH <3

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It has a morning routine. A gratitude journal. A before-and-after. It speaks in the language of glow-ups and healing eras and choosing yourself. It is clean and it is hopeful and it is, more often than not, built on a foundation I never had.

And then there is the other kind…

The kind that happens in hospital beds. In dialysis chairs at 6am. In the mirror when your hair is falling out and your body doesn’t feel like yours anymore and you can’t remember the last time you felt joy. Not performed joy, not grateful-to-be-alive joy. The quiet, ordinary kind. The joy of just being okay.

I have lived so far down in the dark that I stopped being afraid of it. Not because I’m fearless. But because when you’ve already lost so much- your health, your hair, your sense of self, seasons of life swallowed whole by illness- fear starts to feel like a luxury you don’t have time for.

Chronic illness. Kidney Disease. Dialysis. A transplant. The ICU. Histoplasmosis. Tremors. Hair loss. Loss of joy. Loss of self. Each one arriving before I had finished grieving the last. Each one asking more than I thought I had left to give.

I am turning 27 this year.

I have watched people twice my age go quiet when I give them a glimpse behind the curtain. Jaw drop. Eyes soften. And then, almost every time, something shifts and they say it makes sense. It makes sense why you don’t seem like someone who’s only 27. Like my age and my depth don’t belong in the same body. Like I skipped something. Like life handed me the advanced curriculum before I’d finished the basics.

Maybe it did.

I’ve learned- not from books, not from podcasts, not from a 30-day program- that there is an art to sitting inside the hard without letting it harden you. To feeling everything without becoming it. To alchemizing pain into something that doesn’t just serve you, but eventually, quietly, serves someone else who needed to know they weren’t alone in the dark.

I know how to live at rock bottom. I’m not bragging about that. It cost me everything to learn it. But I find it hard, genuinely hard, to be moved by someone’s story of self-discovery when they started on higher ground. When the foundation was already there. When the worst thing they had to alchemize was a bad quarter or a difficult relationship or a season of feeling lost. Those things are real and I’m not dismissing them. But they are not the same. And the world keeps pretending they are.

In this day and age, I would so much rather hear about how you pulled yourself out of the muck. How you made something of yourself from nothing. How you kept going when the body that was supposed to carry you through life started failing you before you were old enough to understand what that meant.

It’s so easy to create the highlight reel. To be a performative individual cosplaying as the happiest person alive. To speak the language of healing without ever having had to crawl toward it on your hands and knees.

I need to be seen in my grief. Not have it handed back to me as a shadow I need to work on. Not be told there’s a lesson in it before I’ve even finished living it.

Seen. Witnessed. Held in it, even briefly, by someone who doesn’t flinch.

And yet…

All of it; every scar, every lesson, every hard-won piece of wisdom…

is incredibly lonely.

There is a specific kind of loneliness that lives in depth. In being the person in the room who has seen too much to pretend otherwise. In watching people your age agonize over things that, from where you’re standing, look like problems you would have traded anything for. You don’t say that out loud. You wouldn’t. But you feel the distance. You feel it constantly.

I feel it constantly.

I don’t want to be strong. Not the illness, not the survival, not the wisdom that only comes from losing things you can’t get back. I didn’t choose to be someone who knows how to live at rock bottom. I just… learned. Because the alternative was disappearing entirely.

But strength, when it becomes your whole identity, starts to feel like a cage.

People see it and they hold you to it. They stop asking if you’re okay because you always find a way. They stop offering help because you’ve never needed it (or so it looked from the outside). They admire you from a distance that slowly, quietly, becomes permanent.

And you’re left being someone people reference. Someone people find incredible. Someone who makes others feel better about their own lives simply by existing.

When all you ever wanted was to be someone people stayed for.

Not marveled at. Not inspired by. Just… known. Fully. In the mess and the grief and the in-between. Without the performance of okayness. Without having to alchemize anything for anyone.

Just held.

I’m not writing this to inspire you.
Im writing this because I needed someone to write it for me, once. Because I was tired of being handed highlight reels when what I needed was proof that someone had survived the real thing.

And maybe, if you’ve read this far… if something in here felt less like inspiration and more like recognition, you’ve been in that kind of dark too.

I see you in it. I’m still in it sometimes.

And somehow, some way, we keep going.

Anyway, here’s my “grief gnosis” playlist that is getting me through the rainy, murky days (literally and figuratively). Maybe you’ll feel it, too.

Grief Gnosis Playlist on Spotify

With Love - TMKH <3

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Sometimes, my body is hard to live in.

I think that’s why I try so hard to tend to the world around me;

my home, my community, the small soft things I can control.

I crave peace on the outside

because, inside, the terrain is often unpredictable.

But there’s this dichotomy…

trying to hold it all together

while watching other things slip right through my fingers.

How are we ever supposed to keep up with it all?

Pain is a strange and sacred teacher.

It humbles you.

Everything outside of it disappears,

and it’s just you- and the pain- together.

Inside the vortex, I ride the waves.

I breathe.

I meet myself in places I didn’t know existed.

There is always more depth.

New perspectives.

Another layer peeled back.

Recently, I found myself in the ER again.

Not for my kidneys, this time.

But still, the ultrasound tech hovered there,

asking questions about my transplant,

pressing around the scar that carries my story.

She noticed how tense I became; how reactive.

I wanted her to stop.

I wanted to cry.

I wanted to go home.

My body remembered,

before my mind could catch up.

She was scared. Triggered.

Thrown into the flames of survival once more.

After seven hours in the emergency department,

I finally went home and crashed; utterly exhausted.

But in the days that followed,

I chose softness.

I held myself

like the scared being I am.

I gave my body love, patience, and understanding.

I listened to her.

I whispered,

“It’s okay to surrender. It’s okay to release the tension. You’ve been through so much.”

And so have I.

xoxo,

taiy

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Welcome to the Chronically Alchemized Substack

The past few months, I’ve been pushing my edges; expanding, learning, and deepening my work in ways I truly never expected. I’ve been navigating the balance of patient advocacy, community support, and personal healing, all while asking myself: How do I bring all of these pieces together? How do I create a space that reflects the full spectrum of what I know and what I’ve lived? -and- How do I bring value to this community?

I’ve been navigating big changes, questioning where I fit, and honestly, letting myself just be for the first time in a long time. I’ve watched the system fail people over & over. I’ve seen and heard things that gutted me, and further reminded me exactly why I do this work. I’ve sat with my own limitations, my body’s truths, and the reality that healing isn’t linear- it’s a constant cycle of death and rebirth.

That’s why i’m bringing it all here.

Chronically Alchemized is more than a newsletter; it’s a living, breathing archive of transformation.

A place where the raw, unfiltered realities of chronic illness, healing, and self-reclamation meet the wisdom of ancient medicine, integrative sciences, and spirit. Here, we hold space for the in-between places; breakdown and breakthrough, science and spirit, illness and identity.

What You’ll Find Here

Expect a mix of storytelling, education, and raw truth-telling woven through these pillars:

• The Patient’s Rebellion: Advocacy, systemic change, and the radical reclamation of autonomy in healthcare and beyond.

• Body, Blood & Bone: Deep dives into whole-person health, from chronic illness & transplantation to trauma, embodiment, and integrative health sciences.

• Medicine Keepers: Exploring the intersections of ancestral knowledge with holistic and clinical healing practices.

• The Alchemist’s Journal: Personal essays, reflections, and lived experiences on healing, identity, and transformation.

Making This Accessible For All

I deeply believe that knowledge, support, and community should never be a luxury. Each of us has different financial situations, and I want to honor that. This is why I’m offering a sliding scale, pay-what-you-can model, so that you can choose the level of support that aligns with your current situation while ensuring that I can continue pouring into this space.

This work is deeply personal, and creating it requires time, energy, resources, and an open heart. Your support allows me to continue showing up fully; writing, teaching, holding space, and offering the kind of guidance I wish I had when I was navigating through some of my most trying times.

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Who This Space Is For

The ones who have walked through fire

and refuse to let the flames consume them.

The ones craving a new paradigm of healing

and embracing both clinical care and ancestral wisdom.

The ones who feel unseen by the system

and are ready to reclaim their voice, their body, and their autonomy.

The ones who believe in the power of community

and choose to sit in circle, share their lived experiences, and hold space for one another.

This is a space for the seekers, the healers, the ones who refuse to accept the status quo. This is for those who know healing isn’t linear, who honor both the shadows and the light, and who are ready to alchemize their pain into something powerful.

much reverence,

taiy <3

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