#brain injury survivor

[kaykaymcdoogle]

It’s been 5 years since I had a stroke. For me, it’s great news that I had a stroke; but for others it was a scary time. But now I am here, sleep-deprived and ready to get on with my life! I’ll see you on the other side, my friends!

[skwibbit]

It’s Brain injury awareness this month 🧠

I am a survivor

Be kind to yourself and others

[mariasanfeliu]

I’m determined to finish this

After successfully writing 10 chapters of my book, I got stuck. I can’t say it was writers block, it was more like I got distracted, which happens to me very easily now. I have small attention span and very bad short term memory after the TBI, which makes it very difficult to write a book about a TBI, but I’m determined to do it. This has happened a lot since I first got the idea to write this,…

[noagskryf]

"i wish i could unmask wherever i went." "i wish i was visibly disabled."

Okay, fine.

Do you also wish you were pulled out of class and asked if you've taken illegal substances because you weren't masking?

Do you wish you were just not allowed in class sometimes because of your symptoms being disruptive?

Do you wish parents would pull their children away from you because you walk funny and make weird noises?

Do you wish your parents got sympathy glances whenever youre out in public with them?

Do you wish all this? Or do you wish you were more accepted by society?

EDIT: i think im not very good at explaining myself, this post is targeted at people who say "i wish i was visibly disabled" and then go on to deny that visibly disabled people experience a lot of ableism and danger because of it. this isn't targeted at people who wish they didnt have to hide themselves.

[stellaltumi]

shoutout to all the fellow disabled people who spread awareness and advocacy even when they have no energy to do so, I see you, I love you, and you are so deeply appreciated. your story has the potential to be someone else's survival guide.

[nightmaretour]

I just came across this site that has all sorts of equipment for people who have trouble with use of their hands (there's things to help wheelchair users to carry things too!). I have hemiplegia and so very little use of my left hand, and there's so many things I saw while browsing where I wondered how I've never seen a solution like that before. Some of the things there are way out of my price range, like their all purpose gripping tool, but I'm genuinely so excited about a lot of the things there. They have a tool to pop pills out of blister packs!!

Sharing because I bet there are so many things there that might help someone else too. Like for real some of the stuff here is life changing. I think they're UK based, but it sounds like they ship elsewhere too.

[gayaest]

Next of the first years for my paravolley AU is: Tsukishima 🏐🤍

[aeliana-882]

Litterally I'm a 28 year old who has had more brain surgeries than I've had dates in my life and it has taken me years to realize my life IS going to be different from others my age. But I'm so greatful for the people on here who support eachother in our chronic illness and for the people I've met in RP's who are now my friends!

Thank you guys, all of you, you guys have no clue how much your online friendship means to someone like me ❤️🧡💛💚💙🩵💜

[viciousland]

crying on the dancefloor [my bedroom] cause i love learning but the educational system hates me [a neurodivergent person] and i hate it right back

For real... how people do it?

learning at the speed they want me to learn is impossible for someone like me

proving my self worth and my intelligence the way they want me to is impossible for someone like me

how do i prioritize the learning process?

how do i know what's important from what it isn't?

how do i understand what they want with trick questions? like bitch I DO NOT GET IT WHY DO YOU WANT ME TO FAIL?!

[comorbidityqueen]

Over a year and a half ago i was lucky enough to be part of an upper spasticity trial to have 5 weeks of intense hand therapy every weekday for 2-3 hours a day. it helped my arm, shoulder, and wrist. I saw immense improvements and actually had the best ever results recorded from the study at that time.

I think back and think to myself "it didn't work". I couldn't move my fingers by the end, and what is wrong with me. I had feelings of shame, guilt and hated myself for trying so hard and not getting the results i wanted.

I had my physiotherapist tell me recently that the problem wasn't in the joint, limb, ect itself, it was in my brain. Not long after that session I had my new psychologist tell me that my brain injury was a trauma in itself. two things i couldn't wrap my head around, because i thought the problem was with me and i just wasn't trying hard enough over the last 18 years to erase this huge part of me that i hated about myself.

Internalised ableism is something that has defined much of my life, and i didn't cause it, i was taught it. Ableism is defined as discrimination against disabled people and/or having a favour for able-bodied people. Internalised ableism is when you're disabled and have that belief about yourself. A short time after my stroke i went back to school a few days a week in a wheelchair where i was relentless bullied for being disabled. This was also a pivotal point in my life when self worth was being developed at the start of adolescence. It was taken away from me because i had the chance to form it like others my age. I was taught to hate myself and struggled coming to terms with what had happened to me, and i still do. I still whole heartedly believe that im living proof bullying can kill you; because it almost did. I spent over a decade of my life struggling with self harm, substance abuse and countless suicide attempts after that trauma, and now in recovery from drugs and alcohol, i can understand just how much that time of my life impacted me.

It's believed that damage to the basal ganglia in stroke victims can be reversed with neuroplascisity (rewiring your brain), yet i have to come to terms with the fact that wasn't a reality for me to a full extent. I am grateful to be able to walk without assistance (although my spatial awareness and coordination is poor), i can talk (with some disordered speech when fatigued and chronic dysphagia), and have somehow perfect vision aside from occasional nystagmus. I have dystonia, spascisity and high tone in my left arm/hand, and despite working endlessly hard on it, remains rigid and paralysed. I have myoclonic seizures on a daily basis and struggle to do some daily tasks, i do everything on my own yet do them slowly. I am very grateful to have a supportive family who cook for me, and ndis services to access the community. I am grateful for the progress i have made and one day hope to understand why this happened to me much like others with lifelong disabilities. After decades of being on pharmaceuticals i am so grateful to be living a holistic life full of amazing natural remedies that help me. This includes castor oil, magnesium oil, a clean diet and of course physiotherapy stretches and exercise.

I know like anyone that has suffered significant trauma in their lives, forging meaning and identity can be hard. Despite every obstacle i have come across in life i still work hard on my daily mobility. I hope one day to show others living with brain injuries and trauma that they too can have meaningful, impactful lives.

[mariasanfeliu]

Time for another EEG

It had been two years since my last electroencephalogram so as much as I didn’t want to, it had to be this year. Even though I know I need to do this, I dread every time my neurologist says I need another one, but he’s right, it had been two years. Two years is a long time, but I still remembered how this process of getting electrodes glued to my head for 24 hours went, so I exercised and washed…

[ozwriterchick]

Also, today is 1 year since my brain broke (I had a stroke)

I’m doing good now, so it’s a celebration :)

[noagskryf]

Bloody hell i wish i could just drink a cup of water without spilling half of it down myself

And bonus points if ableist fucks didn't laugh about it

[kittentism]

hate feeling like im in the background of my own brain. im so so so aware of my cognitive issues of how its getting worse of how its affecting my mood and processing (because what kitty think and what kitty process is different) and how when kitty get tired it gets so much worse but cant do anything about kitty just stuck hyper aware and watching own life

[nightmaretour]

Update: I am in desperate need of a colonoscopy after coming up with blood on a GI cancer screening, however I was referred in August and the NHS hasn't even gotten around to deciding to put me on the waiting list yet. I'm going to need to get it done privately, please check out this post!!

Since people are actually following me for some reason, I thought I should probably make some kind of introductory post I guess.

I'm Zero, I'm a 27 year old visibly disabled trans man with a facial difference living in the UK, and a survivor of meningoencephalitis, septicaemia/sepsis, and a resulting stroke in 2010. I have multifocal right hemisphere brain damage resulting in hemiplegia (including facial paralysis), epilepsy, type 2 narcolepsy, mild anterograde amnesia, prosopagnosia, and other cognitive issues. I also have arthritis from septic damage, degenerative disc disease, and various mental health issues I'm still waiting for a concrete diagnosis on. I cannot mobilise without an aid, and have to live in sheltered housing. I'm open to questions as long as you are respectful.

I post a lot about disability, cripplepunk stuff, trans rights, general LGBTQ+ rights, anticapitalism, etc. A fair amount of what I post is NOT suitable for minors, I guess I can't stop you from following me but I'd really prefer you didn't.

People who are not welcome here include:

-TERFs/radfems in general

-Transphobes/homophobes/racists/ableists/Islamophobes/antisemites? (Idk if that's the correct word), etc

-Zionists

-Forced birthers/anti-choicers (My posts aren't for you!)

-Eugenicists, ecofascists or eugenics apologists of any kind (Seriously, get the fuck off my posts.)

-Anyone here to whine about physically disabled people having spaces to ourselves (like cripplepunk) being "exclusionist"

-Anyone who can't be respectful about facial differences, brain injuries/strokes, or visible disabilities in general.

-transabled/trace/transID/"radqueer"

-Able bodied whump writers (I am not a free reference.)

-Disability fetish blogs

Again, I can't stop you from interacting but please note that I will laugh at and/or block you with zero hesitation if you do.

If any of my image posts are missing descriptions, please let me know! I do try to add them when I remember but my brain has a very limited capacity, and often things slip through the cracks and disappear. Please also let me know if you spot any other accessibility issues, such as text not being screen reader friendly.

I also have an art blog over at @disharm0nious ! There's not much on it so far, since I'm dealing with a lot health-wise right now. I do a lot of work with textiles, including screen printing and making my own cross stitch patterns.

(Pfp is by @reflexicon!)

My common tags because Tumblr's blog search function is dogshit:

(please ignore this post if you're seeing it in these tags)

[iloveanimalsmorethanhumans]

It's been 14 years, now...Wow....

Story time! For those who are not aware of what went down in my life 10 years ago, and even for those who were,

Here's the story:

10 years ago I was a divorced Mama, renting a room in a house with two other women, trying to juggle work and motherhood and I was pretty miserable.

I had just broken up with a guy who turned out to be a severe alcoholic. (Oh, the irony.)

I had spent the evening before hanging out with one of my best friends, laughing at the silliest things until my stomach hurt. I felt pretty good that night. I didn't get home until about 2 a.m. and I had work the next morning.

That same night someone else was up all night, not having nearly as much fun. She and her boyfriend were up all night fighting, and drinking.

At 7 a.m. I managed to get myself up and out the door. I was tired, but still happy.

The other woman would be leaving her boyfriend's house soon. Drunk, and not happy at all. She would have a bottle of wine with her.

My memories of what happened next shatter into bits and pieces.

I can remember voices, talking, being on the side of the road, arguing with the first responders about whether I was wearing a seatbelt or not. Yelling at the same first responders to call Lowe's and tell them I was going to be a little late.

I don't remember much for a while. Totally missed the helicopter ride to Christiana.

I digress. What I forgot was the part where that other woman and I met, in the middle of the road, head on.

The impact spun my van around and caused it to flip. I was partially ejected from the passenger side, partially in a ditch with the top of the passenger side on my chest.

There was a farmer who heard the collision and my screams. (I don't remember screaming, but given the situation it seems to have been an appropriate response.

He called 911 and held the van up off of me until they got there. (I would meet him a little over a year later in better circumstances.)

The time after that is kind of a blur. 3 weeks in the hospital getting pieced back together. My ankle was crushed and some of the bones decided to check out the world outside of the flesh.

My father and Step Mom came up from North Carolina and immediately jumped into cleaning up all of my loose ends and figuring out how to help me piece my life back together.

There are two metal plates and some screws in my leg, they became the plates and screws for the rest of me. I'll be eternally grateful for that.

I'll also always be grateful to my cousins who drove over as soon as they heard so the first people I could see after surgery were family. That still resounds with me, and remains an important memory in the fog.

It took 10 long months, moving to North Carolina, leaving my son here, almost losing my leg to infection, a lot of tears, a lot of laughter, and so much patience and determination.

I look back and can mark the changes in my life since then. The full extent of my injuries wouldn't be discovered for a few years. Hello head injuries and brain damage!

Yeah, I've been through a lot. Some days I struggle more than others, but I survived, and I am thriving. Although some days I can't see it, and depression doesn't just go away after you survive something like that, no matter what the movies show, but the good days outnumber the bad, and overall, I am happy, and I love my life. I'm grateful for it, and I'm grateful for the people sharing it with me. ❤