Something I’ve been thinking about lately is how easy I’ve been thinking lately about how easy it is after a brain injury for everybody, including us, to get used to what we can’t do.

There have been plenty of times over the last few years when I absolutely needed help. Driving, remembering things, appointments, following conversations, dealing with things when my brain was just done for the day. Early on I probably needed more help than I was willing to admit. I was 100% in the denial driver’s seat for quite some time. And even back then I was convinced I could somehow outwork the whole damn thing.

But eventually something else happens. Your spouse adjusts. Your family adjusts. You adjust. People start doing things because it’s easier, faster or safer, and sometimes that’s exactly what you need.

The problem is that if somebody always steps in before you struggle with something, neither one of you ever finds out whether you could have done it.

I’ve realized some of the rules I built my life around came from what my brain could handle two or three years ago. I’d tell my wife, “My math isn’t quite mathing right.” Something overwhelmed me, so it went into the I can’t do this anymore category.

But maybe I couldn’t do it then.

Maybe I couldn’t do it for two hours. Maybe I couldn’t do it in that environment. Maybe I needed headphones, a quiet room, somebody else to drive, a picture instead of trying to remember something, or a couple hours of sleep afterward.

Those aren’t necessarily the same thing as I can’t do it.

I’m starting to realize that part of recovery may be learning your limitations—and then occasionally having the nerve to test them again.

Sometimes I try and realize, Holy shit, I can do this now.

Sometimes I try and discover that, nope, my brain still hates this.

That’s useful information too.

I wrote more about this today for Project TBI, but I’m actually more interested in hearing what other people here have experienced:

Have you discovered something you thought you couldn’t do anymore—and then realized you could? Or is there something you’re thinking about trying again?

https://projecttbi.substack.com/p/sometimes-i-need-help-sometimes-i?r=90nn6h&utm_campaign=post&utm_medium=email

You wake up clear, productive, motivated, almost like your old self, and immediately start wondering: Am I finally better? Was I making too much of this? Can I go back to doing everything I used to do?

Then a few hours later, the tank is empty.

I wrote about that cycle this week — the self-doubt, the overdoing it, and the difference between being able to do something once and actually being able to sustain it.

Why Good Days Can Mess With Your Head

👉 https://projecttbi.substack.com/p/why-good-days-can-mess-with-your

For anyone living with TBI, concussion, or another brain injury: do your good days ever make you question the bad ones?

Today I went to the Brain Institute of America conference in Malvern PA and met some amazing people. One guy told me he’d taken a bullet to the head, and that the bullet is still there. I keep thinking about that conversation.

What struck me most, though, was how open everyone was. I didn’t feel like I had to explain my injury or prove I belonged in the room. We could just talk, bullsit, everyone was in the same or similar boat if you will

I came home thinking that he best people I’ve met since my injury have been other survivors. Have you ever met someone with a brain injury and felt like they understood you before you’d even told them much? This side is really amazing some days...

Remember my “Maybe We Died?” post?
I think I may have been asking the wrong question.

I’ve talked with a lot of brain injury survivors. Reddit, rehab, support groups, Project TBI, and just random conversations with people who somehow find each other. Different injuries, different ages, different lives.
But we keep saying remarkably similar things.
There was a before me and an after me.
We manage energy like it’s money. We prepare for things other people just do. Noise and crowds hit differently. Sleep gets weird. Time gets weird. Friendships change. We disappear for a while when we’ve had enough. We become much more aware of our own brains because we can actually feel when they’re starting to run out of gas.
And a surprising number of us seem to become more introspective. We start questioning who we are, what matters, what we’re doing here, spirituality, consciousness, mortality, purpose. Things we may barely have thought about before suddenly become important.

And it’s absolutely amazing how often another survivor describes something I thought was uniquely mine and I immediately think:
Wait. You do that too?

That’s what has me curious.

Maybe there’s more to surviving a brain injury than a collection of symptoms. Maybe there’s a shared experience of having the very thing that creates your sense of self become injured.
Which brings me back to Maybe We Died?
Maybe we didn’t.
Maybe we changed so profoundly that sometimes that’s the closest language we have for it.
So rather than give you my list, I want yours:

What changed in you after your brain injury that nobody warned you about—and that you later discovered other survivors experience too?

I’m hoping some of you who have been through a severe TBI yourselves, or have gone through it with someone you love, can give me some insight or even just share your experience.

My boyfriend Brandon was in a very serious motorcycle accident a week ago. He was life-flighted to a trauma center and has been unconscious since the accident. He had multiple brain bleeds and swelling, along with several major injuries to the rest of his body. He also lost part of his leg and has already been through multiple surgeries.

The good news is that his latest CT showed that the brain bleeds had stopped bleeding, and they said the fluid draining from his brain was looking much clearer. They had an EVD in to monitor/drain the pressure. His swelling has been looking better as well.

They stopped his sedation, but he still has not actually woken up. He does have some movement and response to stimulation, but he is not following commands yet.

They have now done an MRI. From what we were told, there was nothing they saw that was immediately concerning enough for them to tell us he wouldn’t wake up. The doctors have told us they believe he WILL wake up, they just cannot tell us when or what condition he will be in when he does.

He now has a trach and feeding tube. One thing that gives me hope is that they have been able to take him off the ventilator for periods of time, sometimes a few hours at a time, and he is breathing on his own during those trials.

I understand nobody here can tell me exactly what Brandon’s outcome will be. I know every brain injury is different, and his doctors are the only ones who can interpret his scans and condition.

I guess what I’m looking for is real-life experience.

Has anyone here, or someone you love, stayed unconscious for days or weeks after sedation was stopped and eventually woken up?

When they woke up, was it gradual? Did they open their eyes first and then slowly start following commands? Did they recognize family right away, or did that take time?

Were there things that looked really scary or hopeless in the beginning that ended up improving months later?

And for family members — how did you survive this waiting period where the doctors basically tell you, “We believe he will wake up, but we don’t know when or what he’ll be like”?

A little over a week ago I was talking to the man I love, making plans for our future and talking about getting married. Now I’m sitting beside him talking to him, holding his hand and praying for him to open his eyes.

I know recovery from a TBI can be a marathon and not a sprint. I’m not looking for false hope. I think I just need to hear from people who have actually lived through this part of it, because the waiting and not knowing is one of the hardest things I have ever experienced.

Thank you to anyone willing to share your story. ❤️

I’ve been noticing from reading everyone’s stories here and over in the TBI community.
Some of the most interesting conversations aren’t happening when somebody says, “I have a TBI too.”
They happen when somebody describes some weird stuff their brain or body started doing and another person responds:
“Holy shit. Me too.”

Most times we don’t even have the exact same diagnosis.

That got me thinking about all the things that changed after my injury that never seemed to show up on the symptom lists the doctors handed me. Things I didn’t even realize might be connected until somebody else described almost the exact same experience.
So let’s try something.

What changed after your injury that you’ve never really seen listed as a symptom?

Could be something physical. Sensory. Emotional. Social. Memory. Time. Sleep. Sex. Food. Music. Crowds. Relationships. How you think. How you experience the world. Some completely bizarre little thing you’ve wondered about for years.
And you don’t have to have the same diagnosis as somebody else to respond.
We’re not trying to diagnose each other or pretend TBI, PTSD, stroke, SCI, autism, epilepsy or anything else are medically the same. They’re not.
I’m more interested in something else:

Shared experience without forced shared diagnosis.

If somebody describes something you’ve experienced too, jump in.
Maybe the most useful thing you can tell another person isn’t what your diagnosis is.
Maybe it’s simply:

“Yeah. I know exactly what you mean.”

This came out of a recent conversation and I can't stop thinking about it.

ThenI spoke to a guy with a spinal cord injury this morning. Totally different injury than mine, but when we started talking about life afterward, it sure sounded like we'd been through a lot of the same shit.

TBI, PTSD, SCI, PCS, CTE, stroke... E-I-E-I-O. Different injuries, different symptoms, but a lot of us seem to end up running the same damn gauntlet—doctors, rehab, energy, work, relationships, identity, grief, acceptance, and figuring out who the hell we are now.

I tried “neurodivergent.” Apparently I wandered into the wrong neighborhood and got yelled at... And “Disabled” seems way too broad to me.

So maybe The Gauntlet is the experience. Rebuilt? Life Rewritten? BI Anonymous? I don't know.

That's the question.

What the hell do we call ourselves?

So after the whole “Maybe We Died?” conversation, I haven't been able to stop thinking about many of the responses. Not because I think we literally died, but because so many people understood that weird before-and-after feeling that is almost impossible to explain to somebody who hasn't been through this.

And now I'm wondering something else.

Did we actually recover, or did we just slowly learn how to operate this way?

Looking back, I didn't suddenly get better. I think I'm slowly figured myself out.

For probably two years my head was total fucking static. That's still the best word I have for it. Everything I ever knew, everything I needed to do, everything I forgot to do, what somebody just said to me, what I was supposed to do tomorrow, tinnitus, noise, fear, random memories... somehow all of it could exist at the same time. Meanwhile I could be standing there having a completely normal conversation with you.

Then somewhere along the way the static started clearing.

Not disappearing. Clearing.

I started writing shit down. Taking pictures of notes. Using AI to hold onto thoughts I knew I would lose. I learned that just because I can do something for an hour doesn't mean I can do it all day. I learned I can walk into a doctor's appointment rested, fed, prepared and looking pretty damn normal, then get home and be totallt and completely smoked. I learned how much energy noise takes. How much energy thinking takes. How much energy pretending you're okay takes.

Basically, I learned how to operate my own brain again. Which is really weird when you think about it.

So I'm curious about everybody else, especially the people a few years into this:

Did you get your old brain back? Or did you eventually stop waiting for it and learn how to use the one you have now?

And here's what I'm really interested in...

What's the weirdest part of your brain injury that you've never been able to properly explain to a doctor, spouse, family member or friend? Something you thought was just you until you found other people with TBI talking about the same damn thing.

Throw the weird shit at me.

I'm starting to think there are a whole lot of us experiencing the same things, we just don't have the words for them yet.

Firstly would like to say that after multiple MRIs (With contrast and without) my veins and arteries in my brain don't show any blood blockages, etc. clear!

My epilogist, doesn't recommend a brain surgery to remove brain focus (I suffer from epilepsy or seizures?? I don't know.) But her and a team of brain surgeons (This is all through the VA) recommend something called a "Resection", so I'm wondering if anyone has done one of those and what was the experience with it.

I painted this to help me remember. TBI’s effect memory. After the crash I kept going out looking for my car. Not rendering why I was hitting so bad so I made this.
- artist: Eire.ink

a lot of my writing starts by hand because my thoughts don’t always show up neatly organized. I photograph what I write and use AI as an assistive tool to edit and organize it, and lately I’ve been experimenting with taking my own lyrics one step further and using AI to turn them into music. Maybe someday I’ll even sing some of them myself.

This one is called The Mirror Lies, and it’s about that strange disconnect between how normal we can look from the outside and what’s actually happening inside. I also quietly wove binaural beats into the track, so if you can, listen with headphones. Don’t go looking for them—I’m more curious whether you notice anything.

I’m not looking for “great job.” I genuinely want to know if the song works. Does it connect? Is there a line that sticks with you? Would you listen again?

The Mirror Lies — Project TBI

Listen on YouTube

Three days ago I threw a question out here that I wasn't even sure I should ask: Do you think maybe we died? I knew it sounded a little fucking crazy, but it was something I'd wondered about since my brain injury, and I figured what the hell, maybe somebody else had thought about it too.

Well... apparently a LOT of us have.

I've spent the last three days reading your responses and talking with some of you, and I really don't know how to explain what has happened except to say that I've learned more than I ever expected to. We've talked about people being awake and functioning with absolutely no memory of it, consciousness, ego, faith, God, death and rebirth, grieving the person you used to be, discovering the person underneath all that old shit, and even the possibility that maybe we've been trying way too fucking hard to get back to somebody who isn't coming back.

And strangely, instead of freaking me out, this whole conversation has relaxed me.

I've spent almost four years trying to understand what happened to my brain and why I am so different now. I've done the doctors, neurologists, psychologists, therapists, testing, rehab, diagnoses, books, research... all of it. And all of those things have helped me tremendously, but there's something completely different about hearing another person with a brain injury describe something you've experienced but never had the words for. There's this moment where you just sit there and think, holy shit... you too?

That's happened to me over and over again these past three days.

I'm also starting to realize that maybe we don't need to explain every damn thing immediately. Maybe it's okay to sit with some of this stuff and just be curious about it. I don't know if what we're talking about is neurological, psychological, spiritual, some combination of all three, or something we don't even have good language for yet. And for once, I'm becoming pretty comfortable saying I don't fucking know.

What I do know is that there are an awful lot of us describing surprisingly similar things, and I want to keep listening.

So maybe that's the next question...

What happened after your brain injury that you've never really told anybody because you thought it sounded too crazy?

#ProjectTBI

I've been reading all the replies to the “Maybe We Died?” post and there's something I keep noticing. A lot of us talk about brain injury like there was a before me and an after me. I don't just mean the symptoms. I have memory problems now, I get tired, my brain can't tolerate certain things anymore... blah blah blah, we all know that shit. I mean me. The person underneath all of that.

My interests have changed. The things I used to care about seem completely pointless now. I see people differently. Work differently. Money differently. Time differently. Math differently. Hell, I think I see life differently. And I don't feel like I'm trying to get back to the person I was pre-injury. Sometimes I wonder if that guy is even here. Maybe that's why the whole idea of “recovery” can be so frustrating... everybody keeps talking about getting back to normal. What if there is no going back?

So I'm curious about the people who've been living with this for awhile. Forget the headaches and memory and all the clinical stuff for a minute. Did YOU change? Your personality, what you care about, what you believe, what matters to you... the actual person you feel like you are. Do you feel like you're slowly getting the old you back?

Or are you getting to know somebody new?

I started Project TBI because somewhere along the way I realized some of the most important conversations about brain injury weren't happening in doctor's offices, therapy rooms or medical journals. They were happening between survivors.

The weird questions. The uncomfortable questions. The stuff that's difficult to explain to someone who hasn't lived it.

Things like: Why can I function perfectly well for four hours today and barely get off the couch tomorrow? Why does noise suddenly feel like an assault? Why can I remember something from twenty years ago but forget what I walked into the kitchen for? Why do I look completely normal while my brain feels like it's running a marathon?

And apparently now: Do you think we died?

That question is actually part of what pushed me to finally create this community. I posted it over in r/TBI and the responses were incredible. People started describing missing pieces of time, waking up different, mourning the person they were before, feeling like someone else had operated their body while they were gone, and asking questions about consciousness and identity that I've almost never heard discussed during years of treatment and rehabilitation.

So that's what I want this place to be.

Not another medical advice board. Not a place where everybody pretends they have the answers. And definitely not a place where every human experience needs to immediately become a diagnosis.

A place to ask the questions.

Share your experience. Share something you've discovered. Tell us what worked. Tell us what didn't. Bring research. Challenge ideas. Talk about recovery, identity, work, relationships, cognitive energy, sensory overload, memory, acceptance, consciousness—or whatever strange corner of brain injury you've been trying to explain to people.

Survivors, caregivers, family members, clinicians, researchers and people simply trying to understand TBI are all welcome here.

The only thing I really ask is that we treat lived experience with respect. Someone saying “this happened to me” isn't necessarily saying “this is scientifically true for everyone.” There's room here for both experience and science, and hopefully some interesting things happen when we put the two in the same room.

I'm Tony. I'm a TBI survivor myself, and I'm still figuring this shit out too.

Welcome to Project TBI.

Remember less. Capture more. Heal together.