The truth about recovering from a brain injury

Guardian article I came across from 2010

theguardian.com/lifeandstyl...

"Suddenly a Top Gear presenter sounds like a fount of wisdom to me. What a strange journey this is."

[randomphantoms]

Before my bi I watched with interest the interview between Richard Hammond and Stirling Moss ( cant remember what channel) and didn't quite "get" most of it.

Boy do I get it now!

Sorry I only managed to read part of the article.

[Hidden in reply to randomphantoms]

Never saw that. I do remember Hammond getting excited about sparky for in van/camper though = me too after ABI, but always a bit! Rare to hear that from blokes rather than little girls (am I allowed to say that?!), any others with ABI get that? Related to synaesthesia/rewiring/attention?

Shiny things distract me now, I keep thinking they are holes in things letting light go through, like new too-shiny lock in old house, even though kept looking, think each time, try remember, it went on: 'ooh, is that a hole in the door?' ! Derr memory.

[angelite]

After reading a while I remembered that I stumbled on this a while ago.Thanks for posting and allowing me to re acquaint myself with the contents of this very interesting article : )

[gabimou]

I remember reading the article of the journalist while I was recovering in hospital from my brain abscess at the time i didn't realise how serious having a brain abscess was until actually reading this piece.

I have just re read it again from your link and its so true in how that one day you think whoo hoo I'm back to being the old me but knowing what I know and have experienced the last 2 years know its not going to happen.

You just have to accept and make the most of what you can achieve and move forwards with the knowledge you have gained and experienced.

My neurologist is very helpful in clearly explaining how the brain works especially after surgery even though he is only young I like is way ,new ideas and I suppose I'm helping him gain more experience with having had a brain abscess which they say is very rare which is something they don't see here much in Cyprus

[Hidden in reply to gabimou]

gaboimou:

whoo hoo I'm back to being the old me but knowing what I know and have experienced the last 2 years know its not going to happen.

YES! Year after year.

[BaronC]

I read his book and genuinely shed a tear at the similarities between his experiences and my own. It was an interesting and thought provoking read that I van thoroughly recommend to anyone.

And yet I can't help but dislike the man and anything to do with Top Gear. How strange.

[Hidden in reply to BaronC]

Baron: I read it years ago, after ABI (borrowed it from someone at Headway) but can't remember ANY of it, maybe 2007 or 8?

[iforget]

I find stories like those featured in the article really interesting. It is fascinating the different ways people react to their situation and the ways in which struggles are overcome and lives rebuilt. I particularly enjoy the reports where someone has rebuilt a life to fit their new reality

I was very angry at and disappointed in Richard Hammond for a time... which is a bit ridiculous since I don't actually know the man...but I was furious that he was involved in a very public and dramatic crash and yet in such a short space of time he was supposedly all better again... and there was I ...someone who just couldn't be fixed. His miraculous recovery made me feel more of a failure than I already did and it was oh so unfair. (I was in full spoilt brat mode about that one for sure lol)

I read his book and felt cheated....until I watched an interview with him on TV and suddenly I recognised that all too familiar panicked look behind his eyes as his train of thought derailed and in that moment I realised he was only human too and still a little bit broken and that it was his PR team spinning the lines about his miraculous recovery. I must admit I was a little too happy to find his full recovery was not so full after all (he admitted it himself a short while later) and then I felt bad about being relieved he was not all fixed... I guess I was at my most "emotionally messy human" at that time too....

And I also realised that there is no "real truth" about recovering from or living with the long term effects of brain injury... we share some common issues and experiences and I think it was those common bonds that really helped me to stay alive when I wanted to just quit... but we each have our own set of truths and the reality of life after BI is actually very personal.

[sporan in reply to iforget]

Hi iforget,

Have to admit to those exact same feelings of being a failure when you see and read about those who've had miraculous recovery's or done amazing thing after BI.

My neuropsychologist tried to put me right on it but it stll seems strange to feel jealous of a recovery and relieved to find it's not as miraculous as first shown or as easy as the story says.

In my own case I know, but find it nearly impossible to accept, that I won't get better and that the time bomb in my head can go off at any time and in a place where surgery isn't an option.

Fortunately, at the moment, it's stable in size but is very, very, slowly causing more and more problems and disruptions to all sorts of things.

Damb didn't mean to get morbid, just a bit low I think, couple of bad days.

I haven't read the artical yet but sure I will get around to it at some point soon.

Take care all

Sporan

[iforget in reply to sporan]

It is weird to feel that recovery jealousy/relief thing huh...and hard to admit to having such feelings...but I am at that stage where I am prepared to own my feelings, even when they are uncomfortable... and I will admit it is some comfort to know I am not the only one

I have to say I am not sure how I would handle the time bomb aspect of things ...its not something I can even imagine. I had a hard enough time getting to grips with being broken and finding out that all the kings horses and all the kings men could not put me back together again... I am pretty sure that as is my right, I would continue to hold me a great big pity party - at least twice a year

Hope tomorrow is a better day . Take care.

[sporan in reply to iforget]

Well the time bomb aspect sounds pretty dramitic but the things been stable in appearance on scans now for about 2 years so the tick has got quieter but the slow deterioration can be a bit of a bore.

Some days up some days down. Just had a bit of a run of the down ones so just a bit tired I think.

As for the pity party, think I over played that trump card and no-one listens now

My neuropsych sort of nocked the wind out my sails the other week when I asked about forward progress and was told no magic wand, no pill just trying to give strategies to give as best quality of life as poss as things progress.

Sun shining here and think time for a neurosych break... that or an alchoholic beverage that I'm not allowed lol

Thank you and take care

Geoff

[Hidden in reply to sporan]

sporan wrote:

My neuropsych sort of nocked the wind out my sails the other week when I asked about forward progress and was told no magic wand, no pill just trying to give strategies to give as best quality of life as poss as things progress.

Yes, I know: no magic wand or pill but PLEASE help us prevent as much/any deterioration possible to, slow it down. Cruel to withhold anything that would help prevent MORE disability/pain.

And short-sighted/wasteful of healthcare in future not to invest in us NOW. Then yawn: silly old same old = must save money NOW, short-term. Rubbish.

[Hidden in reply to iforget]

iforget: yes, we're allowed to feel angry, upset = all of it. And those who say we aren't are wrong. I know I mustn't feel sorry for myself too much but when tired and my time/energy wasted on pointless silly tasks then no WONDER I get upset/angry/low.

[Hidden in reply to sporan]

Sporan: I haven't got a time-bomb like yours (I think) so can't imagine really how that feels but I have my own sort of ticking and especially my eyes and joint distortions, muscle loss.

Today (why?) the fading blurry blobs (yellowish on white) were more and for FIRST time sort of streamers made of same stuff (if you know what I mean), sort of lacey effect but not like had in closed eyes (left) in MRI. And both blobs and these streamers were moving, usually they fade out and appear in different places.

Why today? Had stress but had loads more of that some days. Then I thought maybe I'm going to go blind coz after op/ABI all my sight darker. Then tiny panic: what if gets worse and I go blind?

Obviously if happens you try to deal with as best can but out of all senses sight SO vital. I know can compensate bit with others but must be SUCH hard work. And now I watch to copy exercises (not listen instructions) so if blind couldn't do that = HARD.

So blind and ABI, imagine. Unbearable.

Seen/felt my body deteriorate, scary and hurts so bad when people say not true/real and 'oh just getting old.' No.

WHY nothing to try prevent deterioration e.g. how I walk/feet and big toe joints? Sick. Left one SO painful now and huge. Looks awful too and catches on flip flops, can't just slip feet in as used to.

[Hidden in reply to iforget]

iforget:

I particularly enjoy the reports where someone has rebuilt a life to fit their new reality

and

that all too familiar panicked look behind his eyes as his train of thought derailed

Yes: I told Headway woman before I left UK finally that I didm't know how to build a life post ABI. Feels like lots people helping me, thanks all. But the STRESS awful stuff = NOT required, exhausts me.

Do others see what our eyes do? I can feel mine going (maybe roll/move?) but do others see? And if do, do they know what it is, why? Doctors should - and NOT call it mental illness!

[iforget in reply to Hidden]

Muddled:

It wasn't so much seeing an movement in his eyes but recognising the subtle signs of that "oh crap" moment when we realise that our train of thought derailed and inside we are frantically hoping for a sign that will help us get back on track... or failing that, a great big hole to open up and swallow us...

It is the moment when we try to recall whatever the heck the "thingy" was the person (whose name escapes us of course) at the place (we can't remember it now, but we know we went there) tried to tell us we should do when the "oh crap" moment hits...

and it is the subtle signs that we are trying to kick start something, anything at all...all the time hoping (for what seems like hours but is often only seconds) that we look thoughtful rather than stupid ...and at this moment maybe people haven't yet realised we are in trouble but if we can't kick in a strategy they are about to find out...

And the only reason we recognise those things is because they are the things we try to do ourselves every time it happens to us... and strangely while we often do not recognise these things in ourselves, we CAN see them in and empathise with others.

and of course in the case of a star being interviewed on tv the presenter will bring the conversion round because that is what they are there for... but in real life we are not on tv , there is no presenter to save our dignity and we learn to cope as best we can.

I think it is hard for other people to necessarily pick up on things because we become masters at hiding things, we avoid situations and triggers, we learn to build in escape routes and strategies...we do what we have to do to get by.

[Nutkin33]

I'm currently reading Richards book about the accident! I'm 80% through it. Very good! 😀😉

[RachyBoo]

I'll definately read the article thanks for posting, may even get onto his book if you guys like it.

It is good to hear (in a way) that he hasn't had a miraculous recovery, helps is all ok

[Hidden in reply to RachyBoo]

rachyboo: maybe he didn't have a miraculous recovery but he got (I think?) the BEST help/rehab/treatment? In other words he got better than us ornery people do = unfair.

[RachyBoo in reply to Hidden]

He soooo will have got better than us

[Hidden]

I'm old enough to remember Top Gear in the early days! Then it was great. But it gradually became more contrived/fake and then not fun to watch. Whoever controlled the show must have thought (known?) that people watching preferred the fakery = research and true? Or just loyal and no choice?

[Hidden]

oh, forgot to say: as soon as saw article remembered the line 'I now see disability everywhere' and I'd written so do I (some time ago). Coz I now look/see like him, our eyes opened.

And coz I must look down lots now I see all the pavement obstacles and dangers. Health & Safety'd have a filed-day here (France): really awful things all over pavements and NO room for buggies/wheelchairs even if could go over them.

And for person with really bad sight = a minefield. Don't they care or 'no money' or what?

I remember 3 or 4 years ago here seeing people doing sign language to each other, I was on other side of big street. If could understand their language I could have eavesdropped! Hard for them to be private: don't know who's watching and 'listening' in!

[Danslatete]

I read the book a while (?) ago, I found the bits written by his wife very enlightening, up to that point I had given no consideration as to how it affected anyone but me, because I was the one injured and I was the one who's life was all gone to pot, I was the one who was totally dependant on others.

Then I realised that my family had suffered greatly as a result of my BI. I understood a little of the difficulty faced by my children who saw me as the same person physically but we're experiencing a completely different person.

I think it was a great help to me to get some insight ( which was severely lacking) into the bigger picture.