Positive brain illness recovery stories needed!
Hi all,
As you know, there is a plethora of excellent memoirs out there detailing the long road to recovery, one must take to heal thyself. Speaking from my own brain haemorrhage experience here, it is a long lonely road. However, the journey is worth it!
For quite some time, I have been thinking that a series of short stories in book form would be easier to read.
Your thoughts are welcome!
Blessings to you. xx
I think it would be a great idea my road was very lonely frightening and long life changing and on going.any way people can be educated and motivated has to be a must.
You're right Kathy. I hope your road is less daunting these days.
Good idea. Message me.
But it must also be available on spoken format.... When I was very ill (and many others had similar issues) I definitely couldn't read..... But listening to stories and rewinding them to the beginning was really helpful.
That's a good idea. As we know, reading ability can be impaired. I know mine was too. Took me a long time to learn to read fluently again.
I don't know if you've come across Different Strokes and their 'Survivors Stories'
differentstrokes.co.uk/what...
Thanks seal. The Different Strokes survivors stories are informative.
I was thinking about the need for an anthology in print form.
Whatever you need, give me a yell...
Hi Claire,
Great idea. Nothing like a book full of positive vibes :).
My misfortune began in 1996 when I was 11, I was diagnosed with a brain tumour.
Because of the location of the tumour, it was, and still is, causing hydrocephalus.
The plan was to have 3 operations that year; 1, to have the shunt installed and drain the CSF in my head. 2, to have the tumour removed and 3, to have the shunt taken out as I would no longer need it.
Well, things didn’t quite go according to plan.
Operation 1 went well but operation 2 is where it all went tits up. Surgeons could not remove the whole tumour in one go because of the mass of nerves in the area so they had to take the tumour out in pieces.
Some way in, the tumour decided to calcify which meant it was continuously blocking the flow of CSF meaning I need to keep the shunt in at all times.
I have had further operations on the tumour and had a second tumour in 1998 and had radiotherapy on it. This is where my walking balance became terrible and my parents had to hol me upright.
Again I had further operations and my balance had been corrected slightly, I could walk around unaided. My legs were very weak but I did strengthen them via physiotherapy.
So my education has been buggered up because of my neuro problems.
I did go to college for about a year and a bit. I wasn’t doing a lot at college, only art and english so I had a lot of free time in between and because I had pretty low confidence back then I didn’t really do a lot with myself but sit around. Work was being loaded on to me via college and this was giving me nothing but grief and nomgood for my health, I would come home exhausted. This was when my OT or my GP suggested I come out of college. I was told by my GP that I should refrain from getting a job as I was unfit for work.
So I decided to stay at home wasting my life away.
This lasted for 6 years.
This is where I lost a lot of confidence and motivation and I was a very antisocial person. I used to draw a lot when I was younger but being stuck at home, I gave up drawing for a while.
In 2007 I joined Headway and my confidence was on the rise again, motivation too. By 2008 I began drawing again :).
By 2010 I joined another charity and I was introduced to someone who tutured me on my art and had made me draw a lot lot better. I am now selling my art.
Headway have also helped me get out and about more and sometimes I get out using the bus on my own.
I am going to be exhibiting my art next year in the town I live in, Gosport.
Thanks for your story Matt. You have come a long away since 1996. Not only that, you were just a kid when you became unwell. Moving through childhood, adolescence and adulthood can be daunting to say the least. Let alone with an acquired brain injury. You are now an accomplished artist. Headway has been your saviour.
Damp squib here but I think all this positivity has to be tempered by reality. We're still just people and we already know the "Pull your socks" attitudes so I think it's essential to consider being positive hasn't been the main factor in having a degree of happiness.
It needs to be acknowledged you've been incredibly lucky, if your life turns to cr*p it's probably down to external factors not that you haven't tried or been positive enough.
Hi Claire. Not all have a positive contribution. Im want to write a book about the chairty headway in blackpool. Just to warn people to careful about the local group. My group will lies with you, they don't know to handle complaints. The reply from my compliant is full of lies. Today I text the pay staff about the compliant. She reply is up to the national headway. I phone the HeadwayUK but they said it the local group to sorted it out. Is complaint is a year to waiting. Tut Tut! !!!
This is totally inappropriate to what Claire was asking. Kindly stop hijacking other people's posts to try to get your point across!
Hi Swedishblue. People don't have a positive contribution about brain injury. I trying that even the people who should understand about brain injury can lie with them. If people speak up about bad treatment. I wish that I knew that what I know now after brain injury.
I'm 65 now and the accident that caused my brain damage was 49 years ago. I was knocked down and recieved 'severe middle brain damage'. I was in a coma for 18 days and in hospital for 13 weeks, learning to walk again. I was not expected to 'come out' of the coma, then it was supposed to take 18 months until I might even be able to go back to school and continue my A levels (if that was possible at all). I was back at school in 6 months and completed my A levels (though I only passed one out of three) though my teachers had doubted that I'd return to school at all.
Though my sense of balance is lousy and I have a 'fear of falling' (possibily triggered by two bad falls when I was still unsure on my feet) one down the gravel pathway to my school, which was on top of a hill). However I have suffered most from the damage done to my leg while it was in splints which has left me with osteoarthritis.I've already had a hip relacement and may need a knee replacement in the future.
I admit that I am probably prone to more headaches than most as a doctor said 'it beats the alternative' and I've worked as a teacher (before the birth of my daughters) and then as a Civil Servant for 22 years.
23 Yrs post TBI every day is a struggle in one way or another- anxiety flares, not sleeping, over worrying about small things, constant social isolation, over eating, TBI associated health conditions, stealing relatives, feeling aimless in life etc,, etc .. That is me now- flat- worn out, bitter and depressed. I have found no light at the end of this TBI tunnel as we carry the pain and difficulties through everything. But what have I achieved-
* my brain scans were used for trainee Dr exams- they couldn't work out how I recovered so 'well'.
* went back to school eight weeks after TBI. learnt to walk, talk and think again in super fast time.
*Gained GSCEs, A levels and a degree. Awarded a UK government award for work with other disabled people.
* Lived in NZ and gain residency there. Awarded a national NZ disability award. Had a long relationship with an American. Met and befriended people from all over the world.
* Relatives stole and manipulated my possessions and disability trust fund.
* Had a junior management role, where I had staff in different parts of the country at one point.
* Found a woman in England who is perfect for me but she should be a mum and I cant stay in work or health long enough to be a father. Hate what I am denying her.
For every success I have had there have been regular falls backwards. Long periods out of work. social isolation for twenty years. Brief moment of delight after lots of hard work just before falling back, yet again. Its Groundhog Day!
What's my advice for other survivors- take small steps not blind strides! Planning what we do and when is intelligent. Allowing the anxiety and compulsion bugs from TBI to lead us to make rash decisions is the way to ruin. We can do lots, achieve lots, but life drains us of energy and rashly doing too much too often is the way to sink, not swim.
Plan what you do, train yourself to follow schedules, ignore wide compulsions to do crazy things if you have them. Build solid foundations in your life. be sensible to manage your TBI. We can win the 'race' of our lives but as the tortoise not the hare.
headway.org.uk/about-brain-...
It's all been written for me I don't need to say much just that I won't tell you of all my negative reactions since 13 with my manager and my mum as I feel that would being the opposite of this post if you really want just look at my messages on this forum you will soon get the jist as I have 18 of hate in me but I also try and find the smallest positive thing to try and keep me going each day in hope it will cheer someone else up who can cheer me up and it does work
I think its a wonderful idea 3 years down the road for me from a subrachnoid hemmorage but I'm fine after the coils and the recovery life is good and and worth the journey
I think that’s a great idea.
I fell off my bike in 2005, spent a while in a coma, eight months in hospital, and eighteen months off work. But I did go back! My memory was screwed - I knew my husband, and our toddler, but I asked him why he had brought that cute little baby to the hospital. I asked him every day, he told me every day, but I never remembered it, the next day. Our second daughter is now fourteen, and I love her to pieces, but I still can’t remember her being a tiny baby.
I was obviously unlucky to have the accident, but I think I am really lucky to have recovered the way I have.
My advice: persevere, and don’t give up. I am officially registered as ‘blind’, since the accident, but I can see well enough for most things (but certainly not to drive), but I haven’t let that stop me.
Hi all,
Most of your responses over the past week, have been encouraging. Thank you. Not all though. Everyone is entitled to their opinions.
It appears the meaning of ‘positive stories’ has inadvertently been misconstrued to be ‘happy stories.’
Let me clarify myself. No-one in their right mind, is ‘happy’ living with a chronic illness or an acquired disability. We all do the best we can under the circumstances.
Moving right along... I am sorry to advise that I am not able to attend to all that’s required for the anthology. The complex task of sorting, compiling, editing all your stories for commercial publishing is insurmountable for me to do. That’s the reality.
If anyone is interested in running with this...I would be willing to support you.
Thanks.
I think part of the issue is what is the purpose of the anthology, Different Strokes use the neutral term "Survivors Stories".
By using the word positive it appears that you maybe hoping to help others achieve the best possible outcome. However if that is the case you can't achieve that goal unless people are aware what can go wrong as well as right.
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It’s been 8 years since head injury. I would die that night but didn’t. I was in a coma and they were going to take me off life support and I moved. I would never walk , I do. I would never talk, drive, live alone, I do. Iv pushed so hard. Google my name
Thanks Candace. You are lucky to be alive and achieving all you have, since your head injury. It's the perseverance that keeps us going.
No I’m not lucky to be alive at all. Positive story’s always hold lies deep down. I put on a happy face and attitude but it’s false
Why do you not think you are lucky?
What is the name to Google?
I have not In all this time accepted my life now. Never tell that to anyone ever Barr you but I know I can with you. I will not accept it, this is not my life and I don’t want it. Simples. I’m living someone else’s life and I don’t like it. Google Candace Emptage ,,, just look at that smile,,, good ain’t it 🤣
It was a traumatic brain injury I had. It’s forgotten it has an arm and now it’s forgetting I have eyes and can’t work them properly. 😤
For whatever it's worth your words are very helpful, thanks. I am constantly having to look on the bright side to life as a knee jerk reaction to why I feel so bad... "At least you can walk", "at least you have enough marbles left in your head to realise you are angry" those are predominantly my two responses and reactions to the negative thoughts I have. It's draining to have that constant battle in your head all day long and it didn't really make me feel any better. Your story and your response is helpful though. You have done amazingly well and are doing amazingly well. You have a lovely, lovely smile and I really appreciate your honesty.
Yep, I hear you and understand this for sure. Luck is not how I describe it either.