Brain Injury Corner

@LetHopeBeYourGuidingStar

Tagging the disability support taglist

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@Aliia

Thank you so much for all your help! I don't know how I'd be getting this started properly without you!

@LetHopeBeYourGuidingStar, I have had over 30 concussions so I am very familiar with TBIs. I think it is great that you are starting a post where people can share their journey!

@wonderfulRainbow817

Oh wow, that's a lot. You are so strong! How are you doing now after all that?

@LetHopeBeYourGuidingStar, not going to lie it definitely has made life harder. I can't function the way I used to but I am still hanging in there.

@wonderfulRainbow817, It's good you're staying strong through it all! You must have been so resilient, I couldn't imagine having to go through the motions of a new TBI that many times, all the while still dealing with the aftermath of all the previous concussions.

@LetHopeBeYourGuidingStar Thanks for starting this! I had a concussion where I lost a large chunk of time temporarily. It was rather frightening during that time. Luckily for me the effects I noticed was rather short although I was writing university final exams with headaches.

@AffyAvo, oh that is rough. I had to do tests for 9 months during my one concussion and it was brutal. I can't imagine doing university exams during that. Well actually I can because I've done it myself but I am sure your experience was different than mine

@AffyAvo

That loss of time sounds scary! I can't remember my accident entirely, but of what I've heard I wasn't "acting like I had a TBI", so I seemed quite functional in those first hours. The few months following my injury and the bad days are very hazy and I basically drift(ed) through them though... But nothing as bad as what you must have gone through.

As for exams/tests with a TBI, the headaches and the brain fog, unfortunately I am accustomed to it but it's not university level yet (still in high school). So to have gone through something that difficult so soon after must have been very tough. You are both incredibly strong!

@LetHopeBeYourGuidingStar

I'm a TBI survivor too, and it's nice to see someone start a thread on this topic. TBI can definitely comes with variety of different issues and problems, so it'll be interesting to hear from people and share experiences with others.

@OneErased

Welcome! Thank you for being here!

How are you doing now? If you don't mind me asking, of course.

I also look forward to hearing more about how other people are coping and moving along after their TBI. I feel like finding others who unfortunately know what it's like, and being able to relate to their story also helps keep a positive outlook because I don't feel alone facing this situation anymore, and I am amazed by everyone's strength here.

@LetHopeBeYourGuidingStar thankyou for sharing

@ambitioushope1234

And thank you for being here!

Unfortunately many people, either themselves or someone close to them, are impacted by brain injuries, so I hope we can address it more together. Maybe it's idealistic but if we can start a discussion and share our experiences maybe we can be stronger together, and help spread awareness about brain injuries in this little corner of the internet.

Hey everyone, really cool idea!

I'm a brain injury survivor too, and it's nice to find others because I kinda feel lonely when dealing with my injury. Even though some people have been very helpful it's just like they can't really understand the pain sometimes or no matter how many times I've told them "I can't, my TBI doesn't really let me do that anymore" (I haven't played contact sports since my injury, I used to love playing video games for hours but sometimes now after 20 minutes my head starts feeling sick...) some people just don't actually seem to take the time to make a note of it and just keep doing things that make my injury go off (the other day, some idiot literally came up behind me and slammed her hand on my head... she knows full well I still cannot stand physical contact there, especially if there a bunch of pressure applied, I just wanted to scream at her but I was in some much pain like my head was just so confused and shaky that I just stood there trying not to cry).

Oh hello there berries! What a small world!

Honestly I really get what you mean, even though I don't think I've had an experience as bad as yours, at least not with someone who knew I had a TBI. I'm really sorry about that, sometimes it just feels like no matter how you explain the problem to people they just forget, I know we're all only human but still... it's frustrating and painful.

I hope you're doing okay after that?

Moral of the story (thought it went without saying): no smacking people (known TBI survivors or not) on the head!

Hello to all my wonderful TBI pals out there, it's been quite a while I must say. I hope you're all doing well!

I thought I'd open up a discussion on celebrating/commemorating our injury (or injuries). I'd love to know how you feel about this, if you've ever done anything like that or would want to, and if there's anything special you do/would want to do? I can't wait to read from you!

Here's my take, if anyone's interested:

Personally, the word "celebrating" feels extremely off given all the problems that have come with my injury. Commemorating, remembering, seems a bit more accurate. The date of my accident feels special, like a milestone that was initially monthly to track progress, but is now gradually evolving into a yearly reminder that "well, here we are and it's a slow journey". As the date came up last year, it didn't mean that much to me, even as it was the 1-year mark. This year however I felt it was an important date, maybe because it meant even more that "yes, a head injury does last this long", maybe also because it was the dreaded two years mark (I don't know why but there seems to be a common culture that if it's not all gone after two years you are doomed for all eternity, etc etc).

So I've decided to embrace it in my own way by tying a green (TBI color) ribbon in my hair tomorrow (which will be my 2 years mark). Why? Like this I'm not being very obvious by wearing the typical awareness ribbon (which might not be well received by school administration...), but I can still have a discreet sign of TBI awareness on me as I pass the milestone. And also because to me it holds a specific importance: I'm very sensitive to any contact or weight in a specific area of my head, and I have very seriously considered cutting my hair short to limit the weight, but then I'd look in the mirror and what I'd see would remind me that I was not letting this injury control everything about me. Sometimes it's as big or as small as growing out your hair and tying a ribbon in it, I guess.