It’s so strange
I can never fully express what it’s like living with a tbi and the recovery, nothing ever sounds right, all the words feel wrong.
It’s like I’m transcribing a language dead and gone, all the words I have to say you don’t understand, you don’t have the words for what I felt, you don’t have any conjugations or phrases that equate to my grief. so I’m just left saying,
“It was bad”
I think ppl tend to brush over the loneliness of brain trauma and how isolating it is to be recovering from a tbi (traumatic brain injury)
I've been in recovery for 2yrs and something I don't think ppl fully understand is how when ur trying to “move on” and “go back to normal”, your body doesn't move like your body anymore.
It doesn't feel like your body anymore.
There is nothing more devastating than trying live your life in a body that doesn't feel like yours or work like the body you once had. Like how tf do you expect me to move on when my limbs don't feel like my limbs?!
You're left mourning the death of the body you once had and no one else sees or knows how disconnected from yourself you feel.
Brain damage sucks
"Brain damage" only sounds like a harsh and offensive way to describe brain injuries because people constantly use it as an insult. It's a totally neutral descriptor of what it is. I have brain damage. My brain is damaged. It's not ableist to call it that, it's ableist to call people you don't like brain damaged because you think it's an inherently bad thing to be.
give love to people with traumatic brain injury, acquired brain injury, stroke, neurological condition, worsening mental health, trauma, PTSD and all other brain based conditions that make you feel conflicted about your identity. About whether or not you’re the ‘same person’ you were before your injury or illness. People constant evolve and change but can be more difficult when changes more sudden, pronounced, and noticed by others. I hope you are doing well and are able to find some peace, support and love.
Reminder from someone with actual literal brain damage from a brain injury to stop fucking using "brain damage" and "brain injuries" as a means of describing someone whose opinions you don't like or deem as stupid.
It's ableist and offensive as fuck, and for some reason a lot of leftist people think it's okay to use. I've seen posts replying to right wing racists calling them "brain damaged if you believe this" and "do you have a brain injury? do you not understand X?". Just now I saw a beautiful post about fat people throughout history that was absolutely ruined by opening with "How do we break it to boomers with actual brain damage and nostalgic brainrot..." before continuing to say that fat people existed throughout history.
Brain damage does not make you racist. A brain injury doesn't make you ignorant, or fatphobic, or unaware of history and politics. Stop fucking using my disability as a catch all to describe people you think are shitty. Y'all use it like it's a replacement for how people used to use the R-slur, which shows you learned absolutely nothing about why the R-slur was wrong to use and decided to throw in other disabilities instead. Fuck off and stop doing it.
(And don't do it with other disabilities either, because I know y'all do.)
I know a lot of people with brain injuries. They're smart, and funny, and compassionate. They learn about the world and care about social issues and wish they could go to protests if their disability won't allow them to. Are there right wing people with brain injuries? Sure, absolutely. But they are not right wing because they have a brain injury, and using any disability as an insult is still fucking ableist.
Tldr - stop using brain damage and brain injury as an insult. It's ableist and incredibly offensive.
Love, your local brain injured/brain damaged pal
As someone who is somewhat of a “veteran” of the online ND community, I’m disappointed in the lack of positivity and love for lesser known diverse cognitive conditions, and the opposing abundance of posts about “cures” or outdated criteria or treatments for those conditions. So, without further ado, I want to say hello to anyone with any of the disorders I’m listing, and give them the love and support that hardly anyone else in our community has… Shoutout to:
People with Down syndrome
People with Fragile X
People with William’s syndrome
People with dyslexia
People with dyspraxia
People with dyscalculia
People with dysgraphia
People with Prader-Willi syndrome
People with PANS or PANDAS
People with aphasia
People with a TBI (traumatic brain injury)
People with chronic/early onset mental illnesses
People with cerebral palsy
People with FASD or were otherwise disabled via other substances in utero
And many, many more I may have forgotten to list (but still support and love, I will add more to my list)
You are all beautiful and wonderful, and you all deserve so more love, appreciation, acceptance and support. You are just as neurodiverse as the rest of us, and your voices deserve to be heard and amplified.
I love you all ❤️
Is there anyone else who doesn't remember the "before my TBI" time? Like, you were super young (I was eighteen months) when the TBI happened, and there was never really a "before" for you, this has just always been your reality?
I would probably have way less diagnoses if the doctors had explained to my parents and properly documented things when I was a baby.
Like, I have some unspecified hip condition, I was born with it. That's all my mom knows. I figure it's bilateral, and that might be why my gait is weird and gods know how many of the other problems I have with my legs, like how one's longer than the other. The TBI I got as a baby was, according to my mom, complicated. All the doctor really bothered with was saying I'd be fine, he didn't tell her a lot of details. Again, gods know how many of my things that could have caused. There was whatever happened when I was five, when a severe allergic reaction (to something I had only been slightly allergic to before and have only been slightly allergic to after) and asthma we hadn't known I had put me in the PICU for days and the hospital for two weeks, then a nebulizer for months and an inhaler for year but never an Epi Pen, which I have questions about now. Apparently I also have something up with my heart.
And we don't have any of this information because the doctors weren't explaining it.
Not me listening to The Little Mermaid soundtrack and crying about not feeling like a person anymore after my TBI