Hi. I'm suffering from a bit of a mind swirl. I was in a car accident in 2003 where I was told I'd suffered just a concussion. I thought I'd gotten away with just some mild 'short term memory fails when multi attending' word finding problems and facial recognition problems. As I have a brother with a massive acquired brain injury from another car accident - I just didn't contemplate that given how mild my problems were/are - it was possible that I was brain damaged too. Also - as there was medical (and legal) disputes over the state of my brain - and a family desperate for me not to have a brain injury - the truth just got lost in the mire and I tried to carry on as if nothing had happened.
Last year with more advance MRI, PET and SPECT scans I was formally diagnosed with a brain injury. This explains why I've become socially isolated and find pretty much everything overwhelming - over stimulating and can quite literally only do one thing at a time. Its now also thought that I probably had a very mild cognitive impairment since the age of 13 (now 51) due to neuropsychiatric lupus (an immune disease where antibodies can attack any part of the body including the brain) which again - is fresh and slightly disturbing news.
My self esteem has never been high - but since the 2003 car accident its taken a massive dive. I understand at least in part of the ways the injury has effected me socially (although there are some things that are still just inexplicable) - I'm still having a lot of difficulty feeling equal in the world due to the injury itself.
How did you cope with this ?
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Freckle1000
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I can relate to everything that you have written. Not sure of the solution, we just have to adapt and find our own way through this minefield called life.
I'm really sorry you can relate to everything I said - but nice not to feel so alone with all this.
I think there's something to be said about trying to get on with it and adapt.
- and yes - I totally agree that life is a bit of a minefield. I can't quite get over how differently people have treated and reacted to me since the ABI - or perhaps how differently I interpret and react to them ? I seem to be in basic survival mode of the time.
Equality and disability are very difficult terms. Are we disabled or do we have a limitation ?
When people ask me about if I am disabled. I always give comparisons to two people
Stephen Hawking whom had Motor Neurone Disease but intellectually and mentally much smarter than me and most people on the planet.
Andre Pistorius the paralympian whom lost part of one leg but can still run a 100m in 10.9 seconds with the world record at 9.58. So is he disabled when he can run at that speed ?
What we have is more a limitation than a disability. Even though we have a limitation (or several) there may be things that we can do that others can't. We have a regular poster on here Matt, whom is an exceedingly talented artist and very passionate and informative on a number of subjects.
I woudn't stress to much about equality, we all have our purpose however, sometimes it isn't obivious
Thankyou for taking the time to give such a wonderful reply.
It's an excellent mind shift to call it a limitation as aposed to a disability - just like any other physical limitation or obstacle. As soon as I read it I felt a bit of a change in perspective and some weight lift off my shoulders.
I've been struggling with regaining a sence of meaning and purpose - I agree that purpose is a very complex multi layered thing and not always something anybody can always see or know - (quite often giving others a sense of purpose without knowing it is meaningful in itself) Thankyou for that link - I'll read that article.
Thankyou for that article. It's really helpfull how identity and how you view yourself is spoken about. Such an important thing to consider as my identity has taken - probably an un- nessesary - self induced knock.
When I was forced to stop working, my identity was severely knocked. I had lost a long and well payed career, a lot of "friends" - whom weren't really friends. All of my social life of going out, cinema, theatre, etc. Even my cars and the ability to drive.
I even lost my self for a long time and it really scared my wife as she was now living with someone who didn't act or even speak like someone she had been with for 35 years.
Slowly through a lot of perseverance and got there. I started doing simple things - putting on the hoover in the morning, doing the washing, cooking etc. I thought at least if I can do a few things around the house it would serve some purpose.
Eventually my skills started coming back and I could do a lot more. Now I spent a lot of time pottering around in the garden and diy work. Not how I expected to end my working life but not that bad to be honest.
Yep. I can relate to a lot of what you just said. I'd just finished university and was about to have a go at starting a career. A lot of my self worth was tied up in that identity.
After the ABI I moved back to a small county town where I grew up and the people who came to say hello were expecting someone a bit different - and didn't really know what to make of me which at the time was confusing.
My family's going through an extremely tough period and I don't have the heart to tell them about the recent scans/diagnosis - despite a bit of a relationship erosion in some part because of the under recognised injury. ( the family has always been a bit complicated & fractured though ) so it's easy for me to sneak under the radar a bit.
Like you - I do have some solace in tackling household stuff like gardening and ( 'trying' 🙃 to fix up an old house ) . You're right - it's not a bad life - in fact - if I could choose my own suffering - I think this life is much less hair raising than what I had planned.
You're so right about 'real friends' Its a great way to loose people who were there for superficial reasons. Sorting the weat from the chaff.
I always likened it to one of those sci fi films and your the main character. There you are rushing around frantically doing things, people all around and then film stops, the camera spins around and everyone has gone and your left standing there wondering wondering what has happened and where everyone has gone. It is that feeling of sudden loss and being alone is quite difficult at first.
What I find with "hands own" work is that it is something I can control - when I do it, how I do it and also more importantly how long it is going to take. Plus I find it does help with a lot of skills - and provides some a lot of humour and head scratching. I once had to cut 4 pieces of wood, I actually cut 7 ! The problem was out of the 7, 5 were the correct size and two were completely random !
"Friends" of the many I thought I had, only one regularly keeps in touch. He used to ring every Monday for 6 years to see how I was doing. All the other have disappeared.
The good thing about this forum is that is frequented by people that have gone in one side of a HI and come out the other end. All our experiences are so different but similar at the same time - which only people with head injuries can make sense of !
Thankyou so much for being so honest about you're experience. I've been dealing with these issues for so long by myself - its both a relief - ( and a bit disconcerting ) to see that people like yourself have gone through the same difficulties and trauma.
The loss of friends has been very difficult. When people first meet me - the ABI disability isn't at all apparent - until the conversation go's on for a bit - so I've encountered a bit of mockery and bullying without knowing why (until now) and a lot of trouble navigating the world.
I'm so sorry you've lost you're friends. Its not anywhere near fair and makes you wonder about the depth and nature of friendship. I'm glad you had one good one who cared enough to keep in touch.
At the moment I totally isolate myself and keep any conversations with people to a bare minimum - both because eventually I get a bit mixed up and become mentally fatigued - but also because I feel vaulnerable around others.
You're absolutely right about this being a great place to talk to people - who seem to have more wisdom and empathy than people with unaffected brains - if there's such a thing as someone with a perfectly normal brain...…..
I totally agree with gaining a sense of control with handyman (or rather - woman here) work. Like you I stop when I overload.
I have excellent skills in loosing tools - forgetting where I put them down - tripping over things I forget I put down - and doing a fair amount of wandering looking for missing stuff until I spit the dummy and have a rest. But its worth the effort as I get there eventually and I appreciate the final product a lot more.
Thankyou so much for you're encouragement and support.
Without wishing to dip more than a toe in the shark infested pool of philosophy, I will always be of the opinion that how we see ourselves is far more important than how others do. I may be in a deluded minority that believes there are hundreds of things more crucial in shaping who I am as a person than a congenital condition and its current effects, but retaining that belief makes me who I am and shapes how I tackle obstacles.
Some people find some kind of comfort and sense of belonging by being labelled in a certain way, by themselves or others, whilst different individuals find such labels as unhelpful and simplistic.
My memory is poor, but were that not the case, I would not have fashioned the coping mechanisms I have, eccentric and possibly unique as they may be.
I struggle with multi- step tasks and staying awake and alert enough to focus, yet can spill out nonsense rhyme from my imagination with alarming frequency. Do I have a disability? Perhaps I would rather say my abilities differ from those of others and my sense of purpose derives from what I CAN do, rather than what I struggle with. These are MY 'rules', but as individuals, that is what matters.
It may well be that what you are looking to achieve will come with the passage of time, rather than any proactive search for it on your part.
I would not presume to have all or any of the answers, but would simply suggest you be wary of anyone who claims that they do.
Wishing you well in finding your path to wherever you want to be.
Froggiefrog - I'm very happy with shark infested philosophy. Thanks for sticking you're toe in it.
I'm determined to reply to you propperly very soon as what you've said is full of a lot of insight and very thoughtful. It's given me a lot to think about.
Thank you for your kind words. Feel free to respond more fully, should it suit. Similarly, I and I am sure many others appreciate that if, when and how you do is entirely up to you.
I think you're absolutely spot on - that disability/limitation is such a small aspect of who we are as individuals.
When I was unaware of my brain involvement - I was able to clearly see the wider depth of my life experience and humanity - but for some reason I've been believing its all been for nothing and its been lost - which is so wrong.
I cant thank you enough for helping me come to realise this.
The Lupus, and now the ABI - has put me on a totally different life trajectory to most people around me. These obstacles created a different life development path and I've turned out a very different person - but not necessarily in a bad way - as I have different insights into life which I would never have contemplated otherwise. ( and I'm not bad at abstracting words and images in a - monty python - esque way when writing to a cousin who enjoys it ) although tellingly I just realised that I haven't written to her since I learnt of the ABI.
If I'd just allow myself to be myself - I'd probably come across as just a little more abstract and quirky.
Thankyou for also pointing out that its ultimately up to me - and not others - to decide whether that's worthy or not.
Before reading you're post - I'd been alternating between hiding behind a shoddy veneer of trying to come across as normal - and testing the water with small social interactions - while not ruminating on how I'm coming across - and just going for it. Going for it - seems to be better all round as Its obvious that I'd been coming across as insincere and hiding something.
While others effect my reality - I do spend all my time in my own mind - so living my life to MY rules - as you said - is vital - otherwise I'm not really living my life at all.
ps. You're very wise about being cautious about people who claim to have the answers. I've dabbled with some counselling - and while its nice to have some emotional support - since the 2003 car accident - I've never encountered so many - dare I say - moronic labels which have had the effect of diminishing my confidence and humanity. (the unhelpful and simplistic you mentioned)
To look at the ABI classification in a similar way -as in yes - it points out some limitations - but it doesn't come close to explaining who, or why I am.
I cant thank you for enough for helping me find the right thoughts to get through this.
I'm sure all of the thoughts were there somewhere. I just say it as I see it, nothing more complex than that. This said, anything that you see as a benefit to you is splendid. When it comes to life paths, I have always maintained that even events that can seem negative simply divert things into a different direction, out of which, positive things can happen, that would not otherwise have done so, had it not been for the initial negative event.
' Going for it ' is, I think, the only way to test the water. It can be worrying to contemplate doing so, of course and I would not want to be dismissive of these concerns, but, as someone who has as his mantra, I never want to start my final sentence with ' I wish I'd...', or 'If only...', I suppose I would say that!
Hopefully, you feel strong enough to ' be yourself' and that you actually enjoy it and find it liberating. Naturally, the approach may take time to 'settle in' but I'm sure you won't be put off by the odd setback.
As ever, just my take on things and anything I might be able to help with, just ask.
Thank you so much for you're wisdom and you're caring offer of more help if I need it. It's very nice to know you're there.
A slow and gentle approach to - re - entering the world without being too hard on myself - and getting back up on the horse when things go badly is good advice. In the past when falling off the proverbial horse - I've tended to stay well and truly on the ground.
What you've shared is very inspiring and has helped motivate me toward gathering the strength I need for change. When I think about it - it really does come down to strength.
Having a chronic illness with all this - does often clarify the need to live life honestly and to the fullest - but actual sensible advice on how to get there has been fairly short on the ground.
So again. Many many thank you's for taking the time and effort to share you're insight.
Thank you for your kind words of response. What inspires, motivates, or drives us is a very personal thing. For me, the will to do things comes, uniquely, from our dog! Normally she goes to work with my partner, but has stayed at home with me since I was initially discharged from hospital in June after my shunt revision operation.
Having the responsibility of making sure Trudie gets fed, exercised and generally mollycoddled may not sound an earth shattering commitment...and in truth, it is isn't, but, in terms of focus, motivation when tired and feeling you're not on the 'take' entirely, it is crucial.
Out of context, taking care of our diva dog might seem entirely unconnected to what some people to deal with...but the benefit of a reminder that the world doesn't revolve around me and that their is far more to me as a person than simply a recovering individual ensures I don't stumble into victim mentality, or lose sight of the fact I am extremely fortunate to be in the position I am in, compared to some.
As always, 'getting back on the horse' can be a daunting prospect, but the horse will always be there, ready for the moment you feel comfortable with getting back on it.
Thankyou so much for you're insightful words and encouragement.
You've not just helped Trudie, but me too. A sense of meaning through being there for others, be they canine or otherwise - as apposed to becoming overly inward focussed - is possibly the be best, and most required - 'kick up the proverbial' - that I need right now - as very recently I'd lost sight of this side of existance all together. Many moons ago I used to hand rear orphaned brush tailed possums and had utterly forgotten the sense doing good - the love and the sheer snugglyness these fur balls gave me.
Firstly, congratulations on incorporating the word 'snugglyness' into your post. That alone is worthy of a tip of my hat, if I had one. ( We don't do hats in our house, Trudie the dog finds them sinister and barks at them!)
The ' there's so much more to me than illness and its consequences' stance I take is something I'm quite determined about. When something plays such a large part in your life, I think it can be too easy to make that the only focus. This is not to belittle the effects, consequences, or day to day reality, or to take issue with anyone who chooses take a different view, but without focusing on the good stuff and the good fortune I have in being able to do stuff, I might end up dwelling on the negative aspects of my situation...which would do nothing to change what can't be changed and make me miserable and an even bigger nuisance to those who might have to suffer it.
Brush tailed possums and Trudie the dog may not have a lot in common, on the face of it, but our daily walks do us both good and because we usually go to the same spot, each day, it is a chance to swap small talk with others I know who are walking their dog. The conversations only touch briefly on my saga ( people have seen it unfold with my various post op dressings etc and we're soon doing doggie talk...far more interesting! ) Whatever the practicalities of an escapist 'activity' are for you, if you get anywhere near the benefit I do from mine...you'll be delighted, I'm sure.
Naturally, the 'kick up the proverbial' you refer to is the main reason for any escapist activity. It can be quite liberating to look back and realise you have spent a large part of your day engaged in things that are not the most earth shattering, in principle, but as a tool to re-assert yourself in the 'real world' their value cannot, in my view, be understated.
One thing I would say is that whilst any diversion might be beneficial, do not be discouraged if it takes more than one attempt to find one that is the right 'fit' for you and your circumstances. Actually contemplating doing something probably feels like the big step it is...and if it takes a while to realise you've found yourself, that's got to be worth the investment, I'd say.
Hopefully, your 'sense of meaning' is out there...keep the world posted.
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