what about writing a book on brain injury survivors????

[Teazymaid]

after a chat this morning on here I’ve thought long and hard about how WE can make a difference ..

my mum in law was a newspaper journalist and an editor of a magazine and I haven’t even mentioned this to her … But who would like to be involved in giving evidence of our lives with our wonky brains and getting this out into a book ???

this may not even happen but I am going to approach her with this idea and would very much like others to show ( even anonymously ) what brain damage actually is like … Sue x

[James1984]

I know Headway publishes a quarterly newsletter with lots of survivor stories. Perhaps you can give your own story of recovery?

I know Headway works with the NHS. Perhaps they would like volunteers to distribute information about brain injury? I would think it would be a great message of hope and give avenues of support for those that are currently in hospital going through brain injury, and their families.

[Duchess39]

Hello, I think you have a good idea. I had a brain tumor removed and it has left me with problems. I have no idea about the info you can get from the NHS I can't remember if they gave me any . But they probably did. I don't know how you would go about getting people to tell you there stories. But I think if you did then put the families stories in there too. Would love to see your book when is done.

[Nafnaf87]

Good morning Teazymaid

Sounds good to me. Real stories that have not been homogenised by the system (Headway, neuro this that and the other, universities, etc.) would I feel be much more helpful to us all.

For example telling me where A and B are without helping me/explaining to me how to get from one to the other is pretty pointless. Last year I went to see a couple of friends at a pub in Gloucestershire. Even though I know Gloucestershire pretty well from a previous life it would have been pretty difficult after leaving the M5 without the guidance of the satnav.

Best wishes

Michael

[Teazymaid in reply to Nafnaf87]

Thanks Micheal for your reply .. it is strange how something I have thought about suddenly becomes something I want to persue but not only from me but from all of the information I have read on hear . I haven’t even asked if mum-in-law would like to do this but I’m guessing she will .. I want the world to know what this invisible injury actually means to us ,including professionals who look at you saying “ I don’t have any idea about head injuries “ 🤔🤔🤔🤔 as even with know idea you still can listen and offer emotional support not put your name in waiting lists all over the nhs for something that isn’t even available 🥴 .. Sue

[Graceissufficient]

Or a novel. A detective novel in which the detective was back at work with PCS and struggling to solve a murder.

[Teazymaid in reply to Graceissufficient]

Mum in law wrote for the real crime magazine so she would love a good detective story … 😂 trying to solve the mystery of missing rehab 🤔😁

[Bluesky36 in reply to Teazymaid]

And it's companion story, "The dr. said what ???? 🙂

[Teazymaid in reply to Bluesky36]

Oh yeah I could easily turn my last four years into a comedy with the detectives trying to solve the problems 🥴🤔😂

[Teazymaid in reply to Bluesky36]

😂 they do that every time you say brain damage 🤔🧠😂

[Makbil86]

Hello Teazymaid , the idea of book is very good. I have thought that kid of thing since the start of my illness. But I haven't had the power of writing .I would like to help you

[Teazymaid]

I’m going to speak to mum -law- if she is up for it I will come back to you and let you know … Sue

[Mhelpsme]

Hi Teazymaid

I know Headway have real life articles but only people like us get to read them. I’d never heard of Headway before my accident.

Supermarkets, offices, shops, uniformed services, etc, have training regarding “disabilities”. BI isn’t mentioned. The general public are aware of disabilities but not BI.

I’d love to contribute to something that may help to bring realisation to everyday life about our struggles. My initial reaction to your post was fear and that sucks.

X

[Teazymaid]

hi It has been astonishing how badly BI are treated .. I did know about Brian injury as I worked with a guy who had brain damage as a child and Luckily remember the training I had had and that was what I started to do for myself .. I’ve done a lot of first aid and that was dealing with head and neck injuries as it was men’s rugby .. .. without the knowledge I had before my accident I don’t know where I would be now and this forum has been brilliant .. can u ask you why your initial thought was fear ? .. Sue

[headwayuk Partner Headway]

Hi Teazymaid, this is such a fantastic idea, and we wish you all the best in the world with this project. If you get around to publishing it, please do share the book as we would love to promote it. In the meantime, if you would like to submit your own story, you can do so here: headway.org.uk/about-brain-...

All the best,

The Headway team

[Teazymaid]

thank you for your support .. it’s very much early days but if we can get it together I will happily share it with you .. Sue

[Teazymaid]

up date on book !!! My mum-in-law has said she would be happy to help me write this book .. I will make a separate new post to say this is what I will be doing and I would like to have some of the conversations I have been a part of put into this as this forum has been amazingly helpful for me and others .. what I can’t cope with is the lack of understanding of TBI so even if this is just for me ( which I don’t think it will be ) I want everything included the diabolical PIP system made public .. wish me luck as this is from all of us who are unfortunately on this pathway. Sue x