u/pProjecttBI

[supprimé]

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’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.

So this was interesting. I cross-posted our “Maybe We Died?” discussion over to r/NearDeathExperience because it seemed like a pretty logical place to continue a conversation that started with a guy receiving CPR for 38 minutes and later having a doctor ask him, “What’s your definition of death?”

Apparently, not so much. The post was removed because their definition of a near-death experience is specifically a hyper-lucid experience of a mystical realm occurring when there is little to no brain activity. They were clear that the group isn’t intended for people who simply had a “close call.” Fair enough. Their group, their rules, and I actually appreciate the distinction.
Hi
But the denial got me thinking about why this conversation has become so interesting in the first place. We have all these different words and clinical definitions for incredibly complicated human experiences: TBI, coma, NDE, PTSD, clinical death, brain death, consciousness, recovery. Medicine needs those definitions, researchers need them, and communities need boundaries. But the person who actually lived through the experience rarely fits cleanly in any of them.

That may be exactly what we’re stumbling into here. Maybe “Maybe We Died?” was never really a question about whether somebody technically died. Maybe the more interesting question is what happens to consciousness, identity and our perception of reality when the brain gets shut down, injured, restarted or fundamentally changed.
And what happens to the person who comes back when “back” doesn’t feel quite like the same place they left?

I’ve been throwing some pretty weird questions out here lately with Maybe We Died? and Did You Come Back Different? and between the comments, DMs, conversations with other people with brain injuries, and everything I’m still unpacking from intensive rehab, I’m starting to wonder if maybe I’ve been asking the wrong question all along. For almost four years now I’ve been saying I’m “recovering” from a brain injury, but lately I keep getting stuck on that word. Recovering what exactly? For the first couple years I was completely lost in my own mind. I actually remember telling my now 86-year-old mother exactly that. Then came the hardcore denial, followed by doctors, lawyers, insurance, disability, money, marriage, kids, memory problems, tinnitus, fatigue and eventually rehab, all while somehow being expected to navigate all of that shit using the very brain I was allegedly trying to recover.

I finished an intensive outpatient program (IOP) for brain injury about six weeks ago, and oddly enough one of the most profound things I got out of it wasn’t a treatment or some magic strategy, it was validation. After years of wondering, guessing and denying a whole lot of what was happening to me, I finally had objective evidence that something really is different about how my brain processes the world. There was something incredibly freeing about that. No more wondering if I was imagining it, no more trying to convince myself I was fine, and no more constantly comparing everything I can do today against what the old me could do without even thinking about it.

And maybe that’s why I’m suddenly questioning the whole idea of “recovery.” Recovery sounds like the goal is to return something to its previous condition, and I’m not sure that’s what is happening here at all. I see time differently now. Money differently. Work differently. People differently. My priorities have changed, things I once thought were incredibly important now seem almost ridiculous, and sometimes I honestly just plain old think differently now. Not necessarily more disabled in every way, just different. I spent years trying to find the guy I was before the accident and lately I’ve decided to stop looking for him...

Maybe we’re not recovering as much as we’re adapting, rebuilding, reorganizing or becoming something different. Maybe some things really are gone and we need to mourn them. Maybe some new things showed up because of the injury. And maybe, this is the part I really can’t stop thinking about lately, some things were there the entire time but all the noise of the person we thought we were kept us from noticing them.

I don’t know.

And that’s why I keep asking you guys these questions. The more stories I read, the more convinced I become that there are similarities between us, but no two people seem to experience this thing exactly the same way. Kind of like our individual experiences with God, spirituality, consciousness, whatever you choose to call it. We can recognize pieces of our own experience in somebody else’s without either experience being exactly the same. Which makes me wonder whether constantly measuring ourselves against who we were before the injury might actually be the worst way to measure how far we’ve come.

So forget the headaches, memory tests, whether you went back to work, whether you can drive again, or how many productive hours you can squeeze out of your brain before it tells you it’s done. I mean you.

If you stopped measuring recovery by how close you are to the person you were before your brain injury, how would you measure it? What the hell does “better” actually mean to you now?

#ProjectTBI #TBIBridge

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.

I asked one of my doctors in a group setting this question once and apparently nobody was prepared for it: “Do you think we died?” She sort of paused and came back with, “Well, what’s your definition of death?” And I remember thinking… I don’t know, you’re the doctor.

But I wasn’t really asking medically. I think my heart never stop but will never know. I assume I was breathing, there’s a clinical definition of death and I didn’t meet it. I get all of that. What I was asking was something a little harder to explain, and after four years of doctors, therapy, rehab, reading everything I can get my hands on and trying to understand what the hell happened to my brain, I’m actually surprised the few outside of other survivors has ever really talked to me about it.

For those of us who were knocked unconscious, especially for an "undetermined aout of time" where the hell did we go?

Unconsciousness isn’t sleep. At least it sure as hell didn’t feel like sleep to me. I’ve slept thousands of times and there’s something continuous about it. You go to bed, maybe you dream, maybe you don’t, hours pass and eventually you wake up. But being knocked unconscious was completely different. I was there, and then I simply wasn’t, and sometime later I was there again. I don’t remember darkness because darkness would actually be something. I don’t remember floating somewhere or seeing a light or hearing voices, and I don’t even remember experiencing “nothing.” There is simply a piece of my previously continual existence that just isn’t there.

And that’s the part I can’t stop thinking about lately.

We spend enormous amounts of time talking about what happens after brain injury. Memory problems, executive function, neuroplasticity, cognitive fatigue, headaches, sensory overload, PTSD, depression, acceptance and everything else that comes along for the ride. Believe me, I’ve lived all of it. But almost nobody talks about the fact that some of us were literally and forcefully separated from consciousness, however briefly, and then somehow returned to it.

I don’t honestly don't know what consciousness actually is, and the more I read about it the more I’m beginning to suspect nobody really does... Maybe it’s biological. Maybe the brain gets smacked so hard that the machinery just shuts down for awhile (Reboots perhaps?) , the recording stops and eventually the system comes back online. That may very well be exactly what happened.

But once you’ve actually experienced that interruption, it’s hard not to wonder about it.

Because there was a version of me before that blank space and there is a version of me after it, and they aren’t exactly the same guy. Obviously there are perfectly reasonable neurological explanations for that. I have a brain injury. My brain changed, therefore I changed. I understand the science as best I can.

Still, somewhere underneath all of that is a much simpler and stranger question: what happened to me while the lights were out?

I’m not suggesting I went to heaven. I’m not claiming I had a near-death experience and I’m certainly not trying to convince anybody of anything. Actually, I’m probably more interested in hearing from people who experienced exactly what I did…which was absolutely nothing. No tunnel, no relatives waiting for you, no brilliant light, no great revelation. You were conscious at one moment and then, from our perspective anyway, we simply ceased to experience anything until suddenly we were back.

So I’m genuinely curious about the other TBI survivors out there who lost consciousness. Have you ever thought about this? Did you experience that same complete absence of time and self? Did something about you feel different when you came back, beyond the symptoms and diagnoses and all the clinical BS and alphabet soup (TBI,PTSD,PCS,APD) we eventually learn to describe ourselves with?

And I guess that brings me back to the question I asked the doctor in the first place.

Do you think we died?

Not medically. I already know that answer.

I mean something else.

I have absolutely no fucking idea. But after all these years of people asking me what happened to my brain, I’m starting to think it’s pretty strange that almost nobody ever thought to ask what happened to me.