Hi I'm a tbi survivor of 37 years I was hit by a car at 10 years old and in intensive care unconscious overnight with a hairline fracture to my skull left side of forehead and a huge blood clot there too I broke my left leg in 2 places and had a cracked pelvis.. Ive been told this by my mum as I have no memory of my accident and still dont. I were in hospital 9 days after my injuries but cant remember it either ive tried to hide and change my disability in my head in silence for 37 years with no support but nothing changes it.1983 society was very different from todays society hense hiding my disability from family friends and anyone I've every met really. After a recent bout of Bells Palsy with no visible cause I cant hide my mental condition anymore. I feel like ive just had a lifetime weight lifted from round my neck finding Headway..go easy coz I'm new to all this 👍👍👍
Living with TBI: Hi I'm a tbi survivor of 37 years I... - Headway
Living with TBI
Hi Stammers1,
Welcome.
I am really glad you finally found Headway and are able to get some help and support.
People here have been through all sorts, and are kind and supportive, and not judgemental.
It really is ok to be how you are here. You are in the right place.
best wishes,
Leaf
Thankyou for yor reply I've lived life with my TBI and life has been very different for me mentally. No more suffering in silence due to judgemental people and society..thankyou again👍👍👍
Welcome to the forum. Glad you found Headway. They have a helpline, email, and loads of information to help you and others understand. There are also day centres for those that need them. They have professionals that are there for major or minor.
We are a pretty friendly bunch, made up of survivers, carers, and loved ones. None of are experts, but we are expert about our experience.
This is a safe forum, so ask what you want, someone will respond, and remember you have your own experience to share and help others. In most areas people say ask anything, even if it seems daft. Well here, to the uninitiated, the most simple things can sound daft, but they are mountains to climb for some.
Take advice as suggestions, not as gospel, always consult with a professional before embarking on anything, what is right for one may not be for someone else.
I am sure after so long of hiding, it is a relief, but also there are probably a multitude of things with no clear starting point. It doesn't matter, start anywhere. Welcome 🍀
Thankyou for your reply I've been trying for so long to find the right path to go down and thankfully I've made contact with Headway and it can only do good things for me moving forward. My brain injury will never leave me but I can now get the support from others that understand my stuggles👍👍
I'm glad you've found us here Stammers - I think Pairofboots and Leaf said it all. It's beyond helpful to share your story and meet with understanding - and to support others.
It must have been very difficult to handle all the stuff that comes with a brain injury on your own all this time. I was very relieved to find this forum and that was only a couple of years after mine.
Did you know that there was a Headway helpline in office hours to talk to as well? It might be useful for you, as being on here might raise further questions in your mind. They are very knowledgeable and supportive - here's the number 0808 800 2244
Headway sent me the link to this I've been in contact with them via email to start and they will ring me in due course..baby steps is needed from me..my tbi has been with me since I were 10 I'm 48 now and cant ignore it anymore..I've heard only good things about all this so I'm starting a whole new journey now...FINALLY..👍👍
That's brilliant, I'm so glad for you, and so sorry you've been dealing with this on your own for so many years - but as you say those were very different times back then, particularly in childhood medicine I think.. and having a BI when you are young, you would have been steered by your parents I guess - must have been terrifying for them too at the time, for you to have been so badly injured. Makes me wonder what happens to children with brain injury today actually - it must harder for them to be heard even now 🌸
Let's just say that back in 1983 there was no support at all for BI or families affected by BI. I physically healed well but mentally I knew from age 11 that I'd changed forever. Speaking out about my BI just wasnt possible so I hid my struggles through sarcasm humour and pushing myself to dangerous extremes. THANKFULLY I'm now on the right road. Thankyou for yor reply👍👍
Hi Stammers1,
I find this forum a great help personally, as I can talk freely to people who have knowledge of brain injury, whether that’s being a survivor or carer/ friend etc. I don’t have a brain injury but my daughter had a TBI (3 years ago) and her injuries sound similar to yours - blood clot at brain which was surgically removed and fractured skull. Fortunately, as it’s not the ‘80s, she had support from professionals (and still does). It must’ve been so difficult for you dealing with this alone. It is life changing - physically and mentally - in a way that I think a lot of people just don’t or can’t comprehend. I hope you find some peace and relief on here. Wishing you all the best 🙂
Taww sending strength and best wishes to you and your daughter. The 70/80s was every different world back then so I hid my struggles everyday embarked on let's just say a very chaotic lifestyle🙈🙈I've lived behind an invisible glass wall for most my life and it's only now with support from my 2 grown sons that I'm starting to accept my disability for what it is and seek support..thankyou for your reply👍
Welcome Stammers1, good to read your story. I think I can relate to you. I had a severe TBI 13 years ago and have spent a lot of that time pretending to be something that I am not. I'm starting (slowly) to realise that I won't get the support that I need unless I talk about my problems. I'm starting to do that and I hope that I'm able to address the issues that I have.
At the moment, my mum is adamant that I recovered from my TBI to exactly the way I was beforehand. This is wrong and has upset me. I'm realising that this is her way of dealing with what happened so I need to maybe let it wash over me, while talking to others (not many of them) who know otherwise.
Glad you've chosen to write on here - it's helped me when I've felt that nobody else in my life can. That's because people here can understand in the way non TBI people can X
I hear ya completely I too have spent my life pretending to be a normal functioning member of my family and peer groups growing up work colleagues everyone ive ever met really. People just dont see the mental turmoil inside for survivors. I dont remember my accident at all and probably never will now my mums info is limited but I know enough to know my accident change me and my life completely at 10 years old..finding Headway and this support forum as given me real hope moving forward that its o.k to open up..I love and hate my tbi these days lol..I hope reading my story will give you and others the same hope I've found. Thankyou for yor reply👍👍
I don't remember my injury either - heres the irony for you - at the time I was a researcher of brain injury and was on a works night out with other neuroscientists. I'm now a walking example of what I was looking in to... X
It is what it is for you (and me too) and we can acknowledge it alhough most of the world may never get it. So its good to have Headway with people who understand.
I was so scared off what was ahead of me as I'm getting older with my BI but I found the strength to contact Headway thankgod and I already feel a relief inside myself my 37 year battle to be normal is over PHEW..I dont know any of you kind people personally but I feel I do know yas already through living with BI..Respect👍👍👍
Welcome to Headway. Your other replies offer great guidance. We are not the 'professionals' who do need to be consulted. But we, including you, are the experts in living with TBI. When you read someone's story on this website and can relate to it feel free to offer your guidance. All those things you struggled with for so long have value and can help others going forward. Living with TBI is a lonely path to follow in that no ones condition quite manifests itself in the same way as anyone else's but it is surprising how much we overlap and can help one another. Welcome.
Thankyou for yor comment my own experiences living with BI is like being behind a glass wall in any situation. Only now in a different society and with support of my 2 sons I am able to slowly break that glass wall down and share my story and get the knowledge and experience from other BI survivors my own acceptance and admitting my disability was tough but I'm so glad I've spoke out..thanks again👍👍
Hello Stammers, me again, I know that having even an MTBI predisposes us to depression, because it produces a disturbance in the white matter. But I think what you might notice now is that back when you had your BI, neuropsychologists were divided between saying it was physical or mental. But since around 2014 because of advances in scanning (fMRI - although still chiefly in research settings) it's now becoming understood to be a physical rather than a mental health outcome, even if scan results are clear. Much the same way as they now acknowledge that shell shock was most likely caused by blast injury, and have found distinct patterns of damage in the brains of modern soldiers exposed to any blasts.
Because of the way that medicine on this has evolved we're still likely to be referred to a neuropsychiatrist and a neuropsychologist, because they have developed the expertise in brain injury issues - but mine were both adamant that my problems are to do with having had a brain injury, rather than being a mental health issue. The emotional and physical support to deal with how we feel once our lives have changed is also really important in learning out to deal with our new selves of course.
Very different times back then but today's medicines and support for BI has come along way enabling alsorts off BI survivors to speak out and get that support. I dont know where my journey will take me now I've opened up about my TBI but I know one thing this journey I'm starting with Headway is so much better than the road I've been I've been down all these years alone thankyou for your reply here's too brighter futures for us all 👍👍
Absolutely 👍🌸
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