Brain Injury

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

For anyone who’s lost the structure that used to define you—this one’s for you.

After my brain injury, I expected physical symptoms. I didn’t expect the identity collapse.

This piece is about what happens when you’re no longer being watched, graded, evaluated—or applauded.

And how scary that space can be.

Relieved. Adrift.

Before my brain injury, I moved fast.

Solved problems before people could finish describing them.

I thought that speed was my superpower.

Until it broke me.

I wrote this piece about what happened after—and how I had to rebuild not just my mind, but my whole way of being.

...And?

How I lived in allegro—and learned to survive in lento.

📝 ...And?

If this feels familiar to you, I’d love to know. It’s lonely work, sometimes.

#I wrote something recently about the strange, frustrating experience of living inside a brain that no longer lets you say what you mean. The noise, the loss of precision, the inability to be understood—or even to understand yourself.

It’s called Your Brain Has Left the Chat, and if that resonates for anyone here, I wanted to share:

👉 Your Brain Has Left the Chat

Sending understanding to everyone navigating this. You’re not alone.

I said I had a headache. Every day. A daily headache. The cadence was correct, but the rest wasn’t. “Headache” made me sound functional. Like someone you could offer Advil to.

The problem was language itself.

The original sin was the brain injury. But then the problem became language. My brain wasn’t working the same way, and the part that explains things was also damaged.

Language for pain has always failed. It’s a white whale. I had inadequacy stacked on inadequacy. So I made up a word: headpain. Not headache. Not trauma. Not static terms. Just: headpain. A hum, a throb, a shutdown. An endless, structureless dissonance.

It felt like being full of noise. Not sound—noise. Hissing, screeching neurons glitching out. Fridge motors triggered flinches like firecrackers. Sometimes I felt underwater. Other times, jagged sparks of sensation.

I used to live in language. English major. Linguistics grad school. Former CMO. I wrote thought leadership. I made things mean things. I was proud of that.

Then suddenly, everything meant nothing. I lost words mid-sentence. I couldn’t hold thoughts in my head. The worst part: I remembered what it used to be like.

I had watched my father, late in Alzheimer’s, struggle for words. I saw his frustration. I felt it later in myself.

Except I passed. I could still say “I’m fine.” I could still mask. I wore dark glasses indoors. No one expected much. There was grace. I gave myself none.

That’s the noise: not volume but distortion. Misfires. Glitches. Knowing what you want to say and losing it in transit. The panic of not being able to speak what you feel.

Pain language is useless: sharp, dull, throbbing, stabbing. None of it fit. I was trying to explain a full-body system crash with a box of crayons.

So I used stand-ins: “headache.” “tired.” “overstimulated.” They weren’t true. Just shapes.

People took me literally. Thought I meant what those words usually mean. They didn’t know I was walking around inside a howling, flickering error code. And I didn’t know how to tell them.

Because the words didn’t exist. And even if they had, I wasn’t sure anyone would believe me.

That’s the cruelty of brain injury: it messes not just with what you know, but with how you know. And how you say what you know.

The world saw me as competent. I could still string a sentence. I still sounded “fine.” I wasn’t. I was glitching.

So I wrote. Alone, in a dark office, with a desk lamp and a half bottle of Albariño. I started, not for clarity or for an audience, but to tell myself: I’m still here.

The noise didn’t stop. It hasn’t. But writing gave it shape. Shape is salvation. It has edges. It takes up space in the world.

I couldn’t silence the noise. But I could name it. And in naming it, I made space for others to hear the truth buried inside.#TraumaticBrainInjury #ChronicIllness

#PTSD
#ChronicIllness
#hopeless
#PTSDSupportAndRecovery
#braindamage
#Anxiety
#EMDRtherapyhorror
#Flashbacks
#ChildhoodSexualAbuse
#TraumaticBrainInjury
#losinghope
#Exhaustedfromfighting
#ChronicPain
#BrainInjury

How am I supposed to keep going, when I have no hope left?
Because of doctors refusing to listen, my quality of life has been taken away from me.
Because of a psychiatrist who forced me to remember being raped when I was 9 years old, I have been reliving those rapes over and over again since 2019
She did the 4th stage of EMDR Therapy to me without explaining anything about EMDR therapy.
She put a crack in the wall I built when I was a kid to force myself to forget 💯.
That wall began to crumble away, and the memories became longer and more detailed as time went on, until they became actual flashbacks.
Literally reliving being raped by him over and over again since 2019.
I filed a complaint with the State Medical Board of Ethics and Professional Services about it, and explaining everything she did.
They have powerful lawyers, and I don't.
Those lawyers used my brain damage against me, and twisted everything I explained and made it look like it didn't happen.
The State Board closed my case, and decided that she didn't violate Ethics laws, completely ignored everything I explained.
They ignored multiple requests to call me so I could explain anything better.
I am NEVER going to stop reliving being raped by him until she tells the truth about what she did, and is punished accordingly by the State Medical Board.
I need her to tell the truth about what she did, so I can start to heal.
What am I supposed to do to get her to tell the truth when I don't have any money to hire a lawyer to help me?
How am I going to start to recover from the damage I'm going through?

I never intended to build a survival system. It wasn’t planned. It wasn’t designed. I stumbled into it piece by piece as life demanded it.

Before my brain injury, I had outlets. Movement. Baking. Music. Writing. They were hobbies. Joyful distractions. After my injury, they became something else entirely: survival tools.

Movement grounded me. Walking my dog, stretching, the familiar ache of muscles waking up—it reset my nervous system when nothing else could.

Baking became both meditation and therapy. Pastry taught me precision and control when everything felt chaotic. Bread taught me patience and surrender when I tried too hard to force order onto the mess.

Music shifted from important to vital. Listening cut through the noise. Learning guitar gave me back mastery, focus, and the strange comfort of being a beginner again. I showed up. I played. I practiced. I repeated. It became ritual.

And writing—writing holds all of it together. It stopped being work and became the way I made meaning out of chaos. It let me explain my new life to myself and to others. It gave structure to the formlessness.

This is my survivor’s toolkit. The tools aren’t perfect. They don’t fix me. But they keep me moving, grounded, and connected. They remind me I am still here. Still capable. Still myself—even if that self has changed.

I believe we all build our own toolkits without realizing it, piecing together whatever keeps us going when life tilts off-axis.

What’s in yours? #BrainInjury #ChronicIllness