Writing it all down..

Although I cant verbally communicate my story of living with TBI for 37 years with no treatment. I've found I have the ability to use a touch pad to speak. Since joining this forum I've been toying with the idea of writing my life and journey for others to read not on paper I cant use it. You will of read some of my stuff on here but theres so much more for me to tell..i call my life BEAUTIFUL CARNAGE seems to sum me up perfectly 🤣🤣

Anyone else ever wrote their story of living with BI..I'm just curious 👍

[paxo05]

Go for it.I attempted it but didnt save as i went along. To make it worse i scrapped my notes as i wrote it so as not to mix things up.

Then my laptop crashed loosing it all. I will start again but not yet.

It is very therapeutic and even if not published its a great achievement.

Just keep saving as you go.

Pax

[Gela64 in reply to paxo05]

Absolutely go for it! My husband mentioned recently he would love to record the journey. ..but since the BI he cannot write. He can speak quite well but as he often has to search for the right words he tends to give up, sadly.... please go for it! Maybe I can read your story to him one day.

[Hidden in reply to Gela64]

These survivor stories mine your husbands and everyone elses NEED to be told in order to educate society and the professionals in today's world. Back in 1983 it were a case of survival of this fittest first I had to hide my disabilities from the world but I cant and wont hide it anymore. My accident made me who I am today. My story will be a good read if your son is at the younger end of TBI..good luck and best wishes to you both 👍👍

[Hidden in reply to paxo05]

Thankyou I spend all my time in home these days it there is just MADNESS out there🤣Our stories need to be told my friend. I'm 48 now and I will make sure my story is told while I'm fit enough to tell it. Thanks also for the saving as you go tip as that's sumat I would definitely do. Theres no need to rack my brains for the story line as I am the story..good luck with your own story..we shall shout them from the roof tops👍👍👍

[Hidden]

Hello yes please do write your story. From a mother’s perspective anything that gives me more insight into what my son is experiencing would be very valuable. The same must go for others with brain injuries and the wider public certainly need a bit more education. Looking forward to the drafts. Best wishes

[Hidden in reply to Hidden]

I became disabled as soon as the car hit me back then. Physically I recovered well but from the age of 11 about 12 months after my accident I knew I'd changed forever and the rest is history I will get this journey wrote down via a touch pad. The mad thing is I dont have to think about the story as I am the story 🤣👍

[textile163]

Go for it. I read lots of books by people who had trodden this path and found them enormously helpful. I was stuck in a ‘specialist neuro’care’ facility where they clearly knew nothing and had no clinical reasoning skills. These books helped me out of there and into the right hands who gave me my life back. I was deteriorating in front of their eyes and no one asked themselves why this was happening. I got to Wessex neuro who were brilliant. They diagnosed hydrocephalus immediately and organised a shunt and apart from this fatigue they turned my life around and are still very supportive. It all happened because someone wrote their story: ‘A dented image’ by Alison wertheimer. I read several books and all helped in some way. Several of the posts on this have made reading recommendations. Good luck with it.

[Hidden in reply to textile163]

Thankyou for your comment my story started 37 years ago on my way home from school. The rest of my life I call Beautiful Carnage as it wernt all bad I achieved and I'm well respected in my local community and wider areas but underneath all that theres a totally different story. I am definitely giving this some real thought as my story must be told..I'm sending best wishes and strength to ya 👍👍👍

[Nanapal]

Yes, please give it a try. Like CrazyBeeWoman I am also the mother of a son with a brain injury and agree your insight may help with our understanding. Obviously ‘the professionals’ give their medical experience and knowledge but ‘ from the horses mouth’ as such maybe a good alternative learning experience for us.

I think it could also be very beneficial to you documenting your experiences and giving you a focus.

Best wishes Nanapal x

[Hidden in reply to Nanapal]

Thankyou for your comment I'm sending best wishes to you and your son. My TBI was back in 1983 when the treatments and understanding just wernt there. I embarked on let's just say a very chaotic and dangerous lifestyle without support. My story hopefully will help others understand and realise the we do survive. The medicines and treatments in today's world is so far on from the 80s its mindblowing..good luck for the future👍

[AHarch]

Have thought about it but in 53 years there is a lot to tell, if I can remember! But I think you are right and I will give it ago. Talking into a dictation machine might be the way.

[Hidden]

My accident took away parts of me back in 1983 and I've lived with the consequences all my life thankfully I still know my english when using a touch pad. I was the one on the other side of the glass wall creating chaos. I looked the same as everyone on the other side but I definitely wernt like them. My story will be a good read as it will highlight the darker side of living with TBI. Thankyou for your great comment 👍👍

[Pedal2]

Hello Stammers1, I had a crack at it as a kind of cathartic exercise, I thought getting it out of me might make me feel better about myself. It did a little because it is only when you start putting pen to paper or finger to keypad that you realise exactly what you have really achieved. I wrote it in diary form and covered it right from the moment I can first remember in hospital. I have no memory of the accident itself. However when I progressed through the early problems and the slow realisation that this thing was going to be around for a while I had to stop writing. The reason for this is that I found it increasingly difficult to actually put into words what my life was like once I had realised how differently I suddenly fit into society, loss of friends, loss of job etc. Suddenly it was like writing a horror sorry where you were the only character. There are years back in the early years that I think are better if they are just filed away but that might just be me. If someone were able to put this in written form I imagine it would be unbelievably helpful to a huge and sadly growing number of people suffering the same or similar problems.

[Hidden in reply to Pedal2]

Thankyou for your amazing comment I can echo everything you describe my life was changed forever back in 1983 the world was a very different place back then. I can remember my life up to my accident and that where it all goes black. My experiences living with my hidden disabilities unsupported for 37 years will hopefully help others find some understanding with their own journeys. The struggle with school, college jobs etc. I'm trying to focus on my feelings and thoughts as I recovered and through my life the highs and lows. I remember only bits of my 9 day stay in hospital but I remember it all in the weeks months and years after. It will take me a while but it needs to be told. I'm not it hiding anymore thank god 👍

[Pedal2 in reply to Hidden]

Good for you, in that case crack on lad. Get writing! 🙂