Brain Injury

Welcome

You find a place where no one can find you. Where no one can see you. You need the privacy to manage what’s happening inside your body and try to find language for the unrelenting pain. It sends messages you can’t decode. It wraps you in a world of deep discomfort where no one else can understand or share your burden. And it leaves you there, in that incomprehensible and inexplicable state. Waiting. Hoping. Trying. Anything.

Here at the Ministry of Sensory Calibration, we specialize in mixed signals: loud silences. Soft stabs. Discomfort you can’t quite locate.

We believe pain is a message—but not always a clear one. It may whisper. It may scream. It may feel like a riddle wrapped in muscle memory.

You’ve likely visited us before without realizing it. Maybe you mistook your migraine for a personality flaw. Maybe you powered through what should’ve powered you down.

That’s why we issue this guidance.

A Note from the Department

You probably grew up believing what a lot of us did:

That the mind is management, the body is labor.That your brain is the CEO issuing commands, and your body is the exhausted team scrambling to keep things running.That you can power through anything—sick, hurt, exhausted—as long as your mind stays sharp and in charge.

Maybe that belief even worked for you. Maybe it helped you survive.

But then something happened. A disruption. Maybe more than one.

A brain injury. Another kind of injury. A disorder. A diagnosis. A long, slow undoing you didn’t see coming.

Suddenly the team stopped responding. The CEO forgot the strategy. And the body started pushing back—taking back control you’d thought you owned. Taking back your voice, turning it into something unrecognizable. Taking back your will, your agency, your sense of self.

What You Start to Understand

The injury upends the system.Your brain wants control—but can’t deliver.

The disorder exploits the system.A twisted version of authority where the mind punishes the body to maintain power.

The slow-healing wound reveals the system.Proof that willpower isn’t a universal solvent.

You’re forced to reevaluate.You start seeing what was always there.

Pain isn’t just pain.Pain is data.And your brain’s been auto-deleting it like spam for years.

You begin to suspect the old beliefs are no longer serving you.That they may never have.

So You Recalibrate

You stop insisting the mind is the CEO.

You start experimenting with the idea that mind and body might be partners.

That maybe the mind isn’t supposed to dominate the body—but collaborate with it.

That healing isn’t about power. It’s about permission.

You give yourself permission to listen. To pause. To revise.

The Ministry Recommends

A gentle sensory reorg: light filters, soft fabrics, slower pacing.

A daily reminder: not all pain is visible. Not all pain is fixable. But all pain is real.

The hybrid survival model: mind and body co-leading as partners, each with their own days off.

This isn’t a one-and-done.This is a version update.

And it comes with bugs.

But here, in BestGuessistan, updates don’t need to be flawless.They just need to reflect where you are now.

You are not broken.You are rebalancing.

Hi Mighties!

I’m Lauren (aka the Phoenix Rising) 💫

I’m a filmmaker and advocate, currently working on a documentary called Fall of the Phoenix—a magical realism journey through brain injury, healing, and reclaiming identity. It started with my sister’s concussion, but the deeper I dug, the more I realized I had my own history of undiagnosed TBIs. This film has become my way of understanding, healing, and giving voice to a community that’s often invisible.

I’m here to connect with others navigating brain injury, mental health, trauma, or just passionate about storytelling as a tool for change. If any of that resonates with you, I’d love to connect. 💛

You can learn more at fallofthephoenix.com or watch the teaser vimeo.com/1090834674!

Has anyone here used creativity to process or make sense of their #fallofthephoenix health journey?

#TraumaticBrainInjury #MentalHealth #ChronicIllness #invisibledisabilities #Documentary ##invisibledisabilities

#for a while, my writing was just about me — my messy brain, my journey through traumatic brain injury. I called it Concussed CMO, a blog that was my way of making sense of a life suddenly fractured and upside down.

But over time, that story outgrew its container.

BestGuessistan isn’t just about brain injury anymore. It’s about rupture — any event or series of events that splits your life into “before” and “after.” It’s about the pieces we pick up, the selves we reckon with, and the uncertain, messy space in between.

BestGuessistan is a place to stop fighting the climb. It doesn’t ask you to rise to it — it rises to meet you where you are. There’s no need for explanations or apologies. Accommodations aren’t begged for; they’re built in.

It’s a sprawling, unruly place — a bit like a patchwork archipelago where volcanic peaks rise beside quiet beaches, and deserts bloom beneath orchards. It’s chaotic harmony, much like our fractured, searching lives.

There’s no Welcome Desk, just a bent sign and a bowl of mismatched keys. You might find yourself at the Rewirement Reserve where time slows, or the Soft Rock Café for those easily startled. The Library remembers you even if you’ve forgotten yourself. You can visit the Noticeboard of Lethargarians, drop by Club Lento where the vibe checks you, or stop at the Emotional Baggage Claim — where maybe you leave a little lighter, or just better held.

BestGuessistan never stands still. It learns and adapts, whispering the vital truth: it’s okay to not be okay. Recovery is a glorious, confusing mess. It’s okay — actually, it’s necessary — to start figuring out who you are now, not yesterday or then.

You don’t have to do this alone. There are fellow travelers here — caretakers, companions, and yes, even the odd yoga dog or two.

So here’s the invitation: lean in. Explore BestGuessistan and find your own path. No two journeys are the same, and that’s the point.

There’s much more to come — new places, new stories, new companions.

Hold tight. BestGuessistan meets you where you are — not where you were or where you hope to be. Where you are, now.

#BestGuessistan

#TBIRecovery

#BrainInjuryAwareness

#LifeAfterTBI

#HealingJourney

#RecoveryIsMessy

#MentalHealthMatters

#InvisibleDisability

#YouAreNotAlone

People know the story. The coma. The brain injury. The machines. The moment they told my mother I wasn’t coming back.

But what they don’t know — what they can’t know — is what happened to my soul in the aftermath.

Because my real awakening didn’t happen in the hospital bed. It started after. In the silence. In the confusion. In the unrelenting questions that wouldn’t let me rest.

Who am I now?

What happened to the “me” that floated somewhere beyond this world?

And how the hell am I still here?

That’s what cracked me open — not just the trauma, but the mystery. The sense that there was more. Something deeper. Something ancient and invisible, humming just beneath the surface of everything.

I didn’t come back chasing normal. I came back chasing truth.

I started asking questions people don’t usually ask — not out loud, anyway.

What is consciousness?

Where does it live when the brain goes quiet?

If energy can’t die, did part of me cross over and return?

Or… did I die in one version of reality and just wake up in another?

It sounds crazy until you’ve lived through it.

I began to see that everything is energy. Not metaphorically — literally. Thoughts, emotions, bodies, trees, sounds, memories — all vibrating, all connected, all flowing. And I realized we’re not just in the universe… we are the universe, experiencing itself through fragile, flawed human form.

The brain isn’t the source of consciousness. It’s the radio — picking up frequencies from something far greater. What I touched in that coma wasn’t a dream. It was pure awareness. No fear. No time. Just a knowing. A presence. A deep, peaceful current that said, You’re not done yet. Go back.

And so I did.

But I didn’t come back the same.

Now I move through life like someone who’s seen behind the curtain — someone who remembers the stillness beneath the chaos. I can feel the world vibrating. Sometimes it’s beautiful. Sometimes it’s way too loud.

I live with pain. Headaches that pulse like thunder. Anxiety that wraps around my chest like a storm. Sensory overload. Exhaustion. A body that still feels stuck between realms.

But I also live with a kind of knowing. Not a belief — a knowing — that there’s more to all of this. That we are not broken. We are becoming.

Energy doesn’t die. It shifts. Evolves. And sometimes, it wakes up in a hospital bed, gasping for a second chance.

So here I am.

Still learning. Still unraveling. Still following the breadcrumbs left by that otherworldly peace I felt when the lights went out.

I don’t have all the answers. But I know I’m here for a reason.

And if you’re reading this, maybe you are too.

Maybe you’ve felt the weight of this world and still heard a whisper through it.

Maybe your pain is the beginning of your becoming.

Maybe your story — like mine — didn’t end where others thought it would.

We are more than our bodies.

More than our scars.

More than anyone has told us we are.

We are light wrapped in skin.

We are memory wrapped in soul.

We are here. Still.

And that something.

Hi, my name is jenannlynn. I'm here because I just heard about this website & I am checking it out. When I made an account, I said I have OCD, but actually I have OCPD (OOOCD-personality) I was also surprised not to see options for "stroke survivor" OR 'traumatic brain injury."

#MightyTogether #OCD #Anxiety

It is clicking and I hope it stays.

Since my second brain injury it has been different how I can use my brain. I have now short term memory loss, more easily distracted by little stimuli, movement around, lights and sound or change in lights and sound… but most of all when trying to talk/communicate with anyone, words make me think other thoughts and forget what is going on.

My brain used to be over intensely exhausting from electrical output. My brain made too many connections at once, I saw everything from every single angle or point possible. I ran into problems of people not knowing what I talked about in conversation, because my first thoughts were 10 thoughts ahead of who I was talking to. I had to explain until they would say “ooooooohhhhhh” and they would have an “aha!” moment. I had more control in being able to keep my thought while helping someone get to theirs.

This was easier because I could keep dozens and dozens of trains of thought straight in my head. I didn’t forget. I always have a lot to say.

After injury, I get a lot of thoughts but they go away before I can try to remember or write down. If I try to speak out of my mouth, I get distracted by anything and it is gone.

Even with words hiding, I still feel all of the thoughts. I still have so much to say but not ways to say it and have deep conversations on it. It is lonely and exhausting. It is weird because I physically feel my thoughts, it is like the urge to make a quick witty joke at the right moment, but when you go to open your mouth to say it, no words come out. Everything inside was ready to speak, but my brain disconnects and I am left with a “just about to” feeling. Like something is forever right on the tip of your tongue, but can’t come out.

Now, I see more in my head than I have the words for. I say to people “my word bank is gone”, I still have some and have knowledge, but when I go to retrieve knowledge I have, my brain gets lost and I can’t find any of the words, but I can feel it.

What happens now is not words that come to me quickly or in response. Instead of words in my head I see pictures, video clip replays, some memories, colors, gestures, movements, charts, graphs, diagrams and more. The problem is, I do not have words for these things I see in my head, I cannot translate what I see into words.

What I see though is in direct response to what someone is trying to talk to me about. So I have times I know what is being talked about, have responses, but cannot translate to words.

I get frustrated a lot. I used to talk a lot and be able to help many people a day.

With my brain injury, when I have a change in any emotion at all, function goes down. When I get frustrated with all that I have to say but do not have access to the words, it then instantly drastically harder to try to speak. My speaking gets choppy and I think I sound like a baby, which frustrates me.

I ask “what should I do?” “What do I do when this happens?” My therapist tells me to write again.

Writing got fun for me just before my injury. I had mild brain damage from meningitis as a 6 month old. At 19 my psychiatrist ordered a QEEG to see if there was a physical reason my mental illnesses are so treatment resistant. We instantly found the brain damage from meningitis as a baby. Before knowing about the damage, I was blamed for not trying hard enough, not having enough self control, being too overdramatic, wanting attention, etc…but it was brain damage.

In 2021 I was 27. I had a breakdown and had a plan to take my life. I was sent inpatient and was assigned a doctor who coerced me and forced me to have electroconvulsive therapy. I had said no, and was told this was my option for treatment, or I could get released to go through with my plan.

After first ECT, I learned the excruciating pain it causes. It feels like what I imagine getting hit by a bus feels. Whole body feels like it was crushed and jelly. The jaw feels like a baseball bat full force at the hinges of the jaw.

Aside from pain, I was thinking responses in my head to nurses questions, in Spanish. I took Spanish throughout high school and into college.

The nurses thought I was speaking gibberish because they did not know Spanish, and put me to bed. I was forced to spend a month in the hospital getting these treatments.

It got better. Then instantly worse than before.

It got better because I had memory wiped and did not know traumas that happened to me anymore. Did not have societies thoughts in me anymore.

Was discharged from the hospital and medically abandoned, no follow up care, no answers to call backs requesting referral or asking where to go for help.

I started to notice after 8 weeks, what was lost was not coming back. More issues communicating and with memory, have never been able to contact Doctor who did this to me. Was told by many random doctors after, that what I described “can’t happen”, but it did happen.

I used to be able to bring these writings more full circle, for now I will just be proud of what I was able to write today.

Hi

I am 45 years old, I like to read, and trying out all things in the arts and crafts area.

I live DID and C-PTSD as a result of highly organised and transgenerational severe abuse throughout childhood and adolesence.

Also diabetes 1 since I was a kid, fibromyalgia for as long as I can remember but diagnosed when I was 35, osteoarthritis in knees and hips diagnosed at the same time, and a few years after I developed psoriatic arthritis (no, that did not make either the diagnosis or the symptoms of fibro go away, and you're not the first to ask as this can just be confusing)

So I am used to living with fatigue, pain, nausea, thd fun package of 'self-regulation' that comes with diabetes type 1. And chaos, hypervigilence, etcetera in the mental department. I've long made my peace with that and try to make tomorrow a little better by coping well today (and then there's those days...)

But last Autumn I got a covid-19 infection and developed post covid/long corona. I have been told by thd medics that my autonomous nerve system has been affected by the virus during the acute infection state. That leads to different symptoms for everyone, fatigue being the most prevalent.

In my case the symptoms are that mild exercise or stress can cause severe illness that may last from hours to days (pem), palpitations when I stand for more than 10 seconds (oi/pots, shortness of breath, nausea and digestive problems, muscle tension and spasms, problems expressing myself, problems with concentration, coordination, memory, focus, language processing and reading. And of course the fatigue which is FAR worse than I am used to.

I feel powerless and lost.

I hope to find some peers here who know what I'm going through.

#Diabetes #Fibromyalgia #PsoriaticArthritis #DissociativeIdentityDisorder #DID #PTSD #PTS #CPTSD #postcovid #long_corona #Fatigue #PEM #post_exertational_malaise #POTS #BrainInjury #pais #post_acute_infection_syndromes

People stumble over the name.

Sometimes I stumble over the name.

BestGuessistan.

It doesn’t glide off the tongue. It’s clunky. Awkward. A little broken.

Exactly.

That’s not a branding blunder.

Not one of those names a company spends decades apologizing for.

It’s not incorrect — it’s intentional. Very intentional.

That’s the lived experience.

Because life after rupture — after a brain injury, a diagnosis, a breakdown, a crack-up — is all awkward.

The smoothness is gone, replaced by rough surfaces and struggle.

Things that used to be effortless now require planning. Coordination. Prep.

Extensive prep. A checklist.

Even speaking. Even being.

Before, I could talk my way through anything.

Any word, thought, quote, or reference was within easy reach.

Like silk off a spool, as Thornton Wilder says in Our Town.

Now, I rehearse. I pause. I hunt for the word that used to live right there, on the tip of my brain.

Sometimes my speech sounds halting.

I hear it before my listeners do.

And with every pause, I’m reminded: the old fluency is gone.

This is the after-you.

BestGuessistan slows you down. Makes you work for it.

Just like I have to work for everything now.

It’s not slick.

It’s not optimized.

It’s accurate.

That name is a mouthful — and so is living like this.

Welcome to BestGuessistan.

Try again, slowly. You’ll get there.

Join me.

The water’s not fine.

But it’s where we live now.#TraumaticBrainInjury #Recovery

Just published something I’ve been working toward for a while: a travel guide to the soft, strange place your brain goes after a burnout, breakdown, or brain injury.

It’s called 36 Hours in BestGuessistan.

A satirical field guide for the newly rewired—where the signage is gentle, the coffee is strong, and metaphors are the local currency.

It’s funny, yes. But it’s also real.

Hope it brings a smile, or maybe just a little exhale.

WendyLC | Substack #TraumaticBrainInjury #Recovery #ChronicIllness