Can anyone relate to me?: Hey there everybody, this... - Headway

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Can anyone relate to me?

saville75
saville75

Hey there everybody, this is my first message. I had a severe TBI 12 years ago and I'm struggling to find my identity again. Before it, I had a career I was so passionate about - I was researching brain injury - oh the irony. I lost that and many other things. With my routine and discipline gone I feel I've been wandering aimlessly, trying to find a foothold on something that gets me grounded, something I can put my heart into, something that makes me feel like me again. But who is me, that's something I'm still trying to discover and understand. It makes me feel so lonely. Is there anyone else out there who can relate to this? If so then I'd love to hear from you x

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Saville75

I read your post and it reminded me of Jill Bolte Taylor's TED talk, A stroke of Insight. She was also studying the brain when she had a bleed. I have watched this many times as I found it uplifting and insightful.

Your words reminded me of the period when I didn't have access to part of my memory which meant I didn't know what I had done and therefore did not know what I liked or didn't like. And by deduction, could not tell you who I was. What is your favourite .... was a question I would smile at. This would impact on my ability to relate to self and to relate to others.

I have a box of photos of me in my earlier life growing up having done some fabulous and adventurous things and when I looked at a few, I drew a blank. Knew it was me, could not connect with the memory experience. I found this put me in an emotionally unbalanced place so I gave up on forcing it. Left the photos in the box.

Over time, my memories have returned, often through going to places I used to go to and seeing the buildings I would regularly go in and then remembering people associated with going through the door or having a conversation outside. In one instance, I got a recall while driving through a place I lived for 6 years. And like a light switched on, I remembered all the 6 years at once - I took to my bed for a few days to process! The main thing that hit me was I used to be a successful business person, with a huge amount of energy, lots of friends and full life. It definitely helped with self identity having access to these memories.

Having used lots of lions mane, magnesium threaonate, and Reishi Cordyceps, I have most of my life back and memories. I would be able to give you a time line of my life. Does it give me a sense of who I am? The connection to self is not like it was before but it is better than it has been!

I have reverted to activities that have the strongest memories. As a child I would play in the garden, build mud pies and sandcastles, climb trees, walk the dog. So now I spend as much time in nature as I can which gives me an identify of someone who enjoys the outdoors.

I see you are an artist and have a child. These are wonderful gifts to help you explore your self through those two different lens. Best of luck with getting back to yourself.

Thanks for that RecoveringH, I hope you don't mind me saying this, but it's such a relief to hear from someone who can relate to me a little. I say "a little" as I know that nobody can relate completely, unless they had exactly the same injury as each other.

I'm able to remember the person that I used to be, and your positive description of yourself pre injury sounds familiar. The way I see myself before is through rose tinted glasses - running a neuropharmacology lab (the brain has always been a huge passion and obsession of mine), painting, going out with friends, travelling, loving my then boyfriend-now-husband dearly. In fact - as my psychologists, counsellors, psychiatrists have all pointed out - I see myself as two different people. The one before who was doing really well and was really successful, to the one after, who has low self esteem, no career, has put on a load of weight (related to self esteem of course) and lost friends and family.

I love painting and I can't tell you how much I love my child. Those are two definites I now have. I need to try and build my life around the things that don't seem to change. Everything else feels hard to grasp and are constantly changing... X

Did the counsellors and psychiatrists ask you to paint the two people? The one you were and the one you are now? Through studying the finished items, you may see quite a few similarities which will bring insight and continuity. x

Well no, but during rehabilitation in Melbourne - that's where I had my TBI, I had art therapy and one of them said I can bring in a photo and paint it. So I took in a shot of me after my TBI. I'd had the front half of my skull taken away to allow swelling to go down and then replaced. So the front of my hair was regrowing. I did this painting and called it Rehab. It made me sad to look at it as it reminded me of my lowest days, but eventually I got used to it x

Thanks for the Jill Bolte Taylor heads up.

I watched her talk last night along with some further interviews, I found her fascinating and her insight exactly what I needed to hear at this point in my life.

I'm grateful.

It was a revelation to read your post. I feel like I don’t know who I am or what I want to do, like I’m drifting aimlessly through life, not knowing what my purpose or destiny are. In many ways I feel like I’ve frozen in time since the day of my brain injury. I don’t know how to move past it. But maybe I’m not meant to. Maybe I’m meant to move with it.

Woah I think I relate to you there - aimless wandering. I have been aimless wandering too which is so *not* how I used to be. I was so driven and knew what I wanted to do. I've ended up seeing quite a few professionals about this - some helped, others less so. But what I'm slowly learning is that yes. the injury brought about a swift, immediate change, but you're still the same person. The same person bit is something I'm struggling to accept. The frozen in time thing is exactly the same as myself. If I have a conversation for long enough with people it eventually comes back to that day. That fateful day. But for me, the answer is to move with it. You were how you were, had an injury and you're still the same person but under different circumstances x

hi, yes I can relate to you, sending you lots of strength, love and -virtual - hugs ;)

Hello Saville75

Well I can empathise completely with you. I had a SAH in 2017. I had to retire on I’ll health grounds from a really good job as a School Business Manager.

I feel that I’ve come back from the dead as had to learn to walk & talk & write again.

I find it very difficult relating to almost everyone around me. I’ve a fantastic family ( 4 great children and their families) . The ICU at Southmead had never seen a family like it. There was always someone by me bedside every day.

Also the rehab centre I went to & spent many months there was absolutely excellent. The physios , speech therapists etc were amazing.

I owe my life to the NHS!

Best wishes Rachel x

saville75
saville75 in reply to Rachel497

i think I can share a few things in common with that Racgel - oh and by the way my name is Lucy! I had a SAH too that night - I started talking gobbledegook to my husband, he told a nurse and describes it as being like ER - everyone ran to my bed from everywhere...

...I went into a coma for 3 weeks and when I woke I could do nothing except move my eyes and body a bit. My Mum (who'd flown across the planet to be with me) is a retired reception school teacher. She taught me to read, write and walk again. I'm so indebted to her I can't put it into words.

So many people say to me that I'm the bravest person. But my response is that I wasn't aware of it, I was in a coma. My Mum, Dad and husband were aware and knew what could happen to me. They for me are the bravest. They've made me realise how important a family can be. Can I just say, I stayed in hospital for 3 months after my TBI - St Vincents Hospital in Melbourne. They were utterly amazing. Off on a tangent a bit, Andy Murray had his hip operation in the same hospital! Oh and I hear you about the NHS, completely. Maybe now after the virus situation, people will finally start to see how damn lucky we are to have them.

Great to get your message Rachel x

Lucy ,

So good to hear from you again. Sounds like you were treated in a fantastic hospital too. I mean if Andy Murray was treated there it MUST be an excellent hospital.

Two of my children have run marathons & cycled from Jon O Groats to Lands End & given the money raised to the rehab centre that gave THEM back their mother!

I’m so proud of them all, as they are me - I am so grateful for every day now!

Thanks for sharing your story with me.

Kind regards

Rachel x

saville75
saville75 in reply to Rachel497

I'm touched by how your children have run and cycled for your rehab centre - totally brilliant and yes, it gave them back their Mum!

I've wanted to thank the neurosurgeon who through that night removed my SAH and removed my skull. Presumably he was on call and brought in He basically prevented much more damage to my brain. He is Mr Jens Wilkie, a German man who now works in a hospital in Tasmania. I bet lots of his patients do what I may do, which is to thank them.

Thank you so much for sharing your story with me too! Having put this post up today has made me start to realise. I'm not the only person in this world who has had a brain injury. I'm not completely alone as I've been thinking for the last 12 years, Lucy X

Welcome to the forum, search old posts for subjects of interest as there is lots of information there, and keep posting : - ) I'm sure there will be people to bounce ideas who share common themes with you. Best wishes Lucy.

Thanks RecoveringH I think I'll do that and see what comes of it x

Rachel497
Rachel497 in reply to saville75

I know I’ve not met anyone who’s had an SAH. I did, however, speak to a lady ( a mother to my sons friend). I was asked to FT her to simply show her that you can get better. She’d only just got out of rehab as the centre she was in had had to close due to COVID. ( they wanted to use the premises for something else). She was then at her home with only her daughter looking after her! So no physio, no speech therapy & no occupational therapist!

Thank goodness we were lucky (🤔) to have had our SAHs before COVID!

Kind Regards

Rachel

saville75
saville75 in reply to Rachel497

Oh my goodness that's not right - to close the place down and not come up with therapy elsewhere? To be honest I don't know where I'd be now if I hadn't had the help I did get. Incidentally it was over in Melbourne that I got the rehab, and when I returned to the UK there was much less on offer. A psychologist only. She was great, but I did feel like I could have done with a little more help, but it was a year and a half after my TBI...you're right though, we were indeed lucky.

Pre-injury I was quite gifted, I was a high achiever, high earner, high intelligence. If someone wanted a report on a subject, 100,000 words in a few weeks no problem.

The huge problem, I had to face when I had my injury was all my gifts were gone. I was like Superman with Kryptonite, I was wondering, is this what it was like to be "normal". Then I realised I wasn't even good enough to be "normal"

When alongside your family, your work is everything and your work provides your identity, then it is taken away. I wondered who I was - am I going to be that guy stuck in a chair? Worse still even my wife, didn't recognise or relate to this "new" person in our bed at night.

Issues like "identity" are yet another facet of head injury nobody explains to the patient or family after the injury.

saville75
saville75 in reply to sospan

Oh you're so right sospan, from where I'm sitting. and I can share the fact that I became a different person. Instantly. As counsellors have talked to me about, people who don't have a TBI slowly evolve into the people they are as they age. Whereas with us it's a sudden and unexpected change. I've found like I'm discovering for myself the person I've become - still after 12 years.

My husband has taken a long time to tell me his opinion, for fear of upsetting me. We're talking a good few years. He also told me there are things that he will never tell me as he feels there's no need to. Hmmm I find that hard, but must respect it, as for him it was terrible. He was told I may die and if I don't then I'm likely to never get out the bed and need to live in a hospice.

Identity. I still struggle when people tell me I'm the same as what I was before my injury. I'm adamant it's not true. Perhaps when I begin the accept that fact, then I will begin to feel better with who I am now. I can only hope...

sospan
sospan in reply to saville75

You councillor has made a very good point that I had never thought about before.

It is quite common for people whom have been in a long term relationship to "grow apart" . The process can take many years. As your Councillor says, it may be post injury the process accelerates and many of us find relationships fall apart.

One of the things between partners is that whilst you both may have secrets it is the trust between you that matters.

saville75
saville75 in reply to sospan

Totally. A few years after my TBI I gained solace - in terms of relationships - with James Cracknell's story. He was knocked off his bike while training and left for dead by the driver. Dear god. He started his recovery with his wife Bev Turner and their children and he was living his life the best he could. They wrote a book together about it. I found out last year that they're now divorcing, which I find really sad. Brain injury survivors have the highest rate of divorce and break up of relationships. Very depressing but in all honesty and facts, I can see why.

sospan
sospan in reply to saville75

Oddly, we are seeing it from double, double sides. I had my injury in 2012 and my wife looked after me as I recovered. Then over the last few years, my wife has acquired 5 concussions in the last 3 years.

So everything we met 44 years ago and it has been quite a challenge for both of us since 2012.

Headshrink
Headshrink in reply to saville75

Yes,I havent changed that much but after nearly dying even without the brain damage I think youd change, My partner couldnt accept it and weve split up, although obviously complicated.We have 4 kids and shes trying to prevent me from having contact with them.I have gone back to work but actually feel I should reboot everything and start again!at 50! feeling a bit lost too

saville75
saville75 in reply to Headshrink

Change is such a huge thing that head injury people have to go through. It's so hard and so painful - for ourselves and for people around us. I'm realising that it takes such a long, long, time to adapt and settle down... X

Hi

I recognise all your thoughts, I suffered a TBI 6yrs ago, and haven’t yet settled personally. I ran a business that employed 18 people, and ended up having to sell it for some financial security.

After a year I walked the Pennine Way over a couple of weeks on my own, wild camped and used YHA when necessary. Then did local hilly half marathons and then rode Lands End to John o Groats in 9 days. I needed to prove my finess and mental strength to myself. 3yrs ago set up a smaller version of the previous business and half 1 employee.

However, I don’t enjoy that business anymore and don’t recognise the new me and know what I want to do. I did it to prove a point which was ultimately unnecessary. Main thing is I still live with my wife and see my kids, but I’m not the same bloke for them. Similar to you I just want to know who the new me is🤷🏼‍♂️

saville75
saville75 in reply to DTBI

Firstly whether you want to hear it or not DTBI, huge well done to you for doing all those physical things! I completely and utterly understand the proving it to yourself feeling. My TBI damaged my eyes. I'm an artist, something I am deeply passionate about. Yet they told me I may never be able to paint again. That really upset me. So when I finally got back to my easel - which took a long time - I started by trying to prove to myself that I could paint. I took photos and copied them. Mix the right colours, draw the right shapes, fill the shapes in. It was basically like paint by numbers! But I started to see that I *could* do that. Eventually it started to annoy me, I thought I may as well just take a photo as that's all I ended up with! So I began to get a bit more confident and put myself into what I was painting as isn't that what painting actually is?!

Your last paragraph - now I don't know if I'm misinterpreting this, but it sounds like you have changed since your injury. Maybe not changed, but it's revealed who you actually are...my psychologist said to me that a TBI like my own, essentially strips back the modifications that I have consciously built up through my life, to reveal the essence of me. The way I was born, almost? That sounds a bit astrology like - which I don't believe in, by the way - but I feel now that she had a point. And with my new circumstances - no more career - I had to work out what I really wanted out of life. It sounds like you have a basic structure still there in your life, and maybe you can work out the bloke you are now and what that bloke now wants out of life x

Headshrink
Headshrink in reply to saville75

That is exactly how I feel, like I have revealed my 'true self' and removed all the social conditioning etc, this sometimes can make me hard to take but I feel like I dont care as I believe Im being honest, its a weird feeling

saville75
saville75 in reply to Headshrink

Woah Headshrink, that's exactly how I feel. My social conditioning has been lost and when I speak now, it's my honest opinion. There are people in my life who cannot take the difference and have backed off from my life. It's very upsetting but I suppose I just have to deal with it x

Ditto to that! It's such a convuluting neverending journey to find ourselves again...we never do! Most days I awake feeling ghastly and shattered. I have to pick myself up gently and say "you've got this". So long as I'm positively focused on something I do my best.

I'll always be on a crusade to find answers, but honestly, it feels like an ongoing game of "snakes and ladders". It's a beast of an illness!

Nathalie Kelly, an online Brain Injury Coach gives helpful guidance - & I've put a youtube link below to one I watched earlier;

youtube.com/watch?v=Ukd_LwN...

Yes I completely relate to that I would recommend 'Identity Theft', rediscovering ourselves through stroke by Deborah Meyerson

Hello Lucy, your question struck a chord with me too. I only had a mild TBI two years ago, so nothing as tough as what you have lived through, but the career I'd painstakingly put together over the previous 18 years (mostly post-divorce, post child- rearing) isn't possible for me now - and so I'm now coming to terms with enforced early retirement, after a fairly demanding work and social life that I valued - and importantly for me - had also provided me with a strong sense of identity (and livelihood ) after first having been absorbed in being a mother and wife, and then being left by my husband. So I do rather feel like I'm drifting aimlessly by comparison to my pre-tbi world too.

The only thing is (and this is a slow burning realisation prompted by some good, and sometimes rather hard, questions from my psychologist) that I think;

- it is possible to re-invent who you want to be several times throughout your life (and possibly normal over many years?).

- it's more than good enough to just be me as I am now, even if that is different to the capable and (admittedly) rather work-obsessed 'previous me'.

- I can now choose to be authentically myself, and to do/be what is really important to me, albeit within my newfound limits ( but I am still trying to work out who I am, and what is really valuable after fitting round family and work for years).

- it is possible to find new things to be absorbed in. For me it is trying to paint ( won't call it art yet...) which gives me the feeling of total absorption and 'being in the flow' I used to get from my job, and it has been a massive relief to feel like that again, even occasionally.

It's not easy though, is it? I suddenly realised this evening after playing with my two year old granddaughter, that pre-TBI, I wouldn't have been home early enough on a Friday to sit on the floor with her. But then I had a bit of a weep for preTBI me anyway ( which doesn't really make sense, even to me, because being with her is such a priceless, and totally unanticipated, joy).

You sound like you have surmounted absolute mountains already - you are an amazing and authentic human being, who will be able to figure everything out with time.

There's lots more of us here too, all in different places. Please don't feel lonely. Sending you a post-Covid virtual hug from me (in a post-tbi insomnia world...)

Jen x

Thanks that is exactly how i feel. I had wondered if it was a 'thing' or just me. So reassuring to see someone struggling with the same stuff and yes why would you mourn your pre abi self when it isnt authentic anyway?. Its a weird conflict

Thanks Headshrink, yes it is very weird, except I'd worked very hard to get to where I was in the City, fairly late in life, and it was going jolly well 😊. But I wonder how I would have felt at the end of the day if I had missed all these little moments with my granddaughter. It struck me yesterday, that my relationships with my family and friends are much better lately than they were when I was more 'driven' and that it's not such a bad thing to be vulnerable, and to show vulnerability, after all.

I completely agree, i feel i am less guarded and more open with people which is a good thing. However,my closest family couldnt cope with that sadly as al they see is something different, i am hopeful that my relationships in the future will be better as a result. Well see!

I can't press "like" enough for your message Jen, thanks so much for getting in touch! In a general way I feel I can relate strongly with your forced career change as I had that too. From an overworking, focussed, passionate, driven neuroscientist to nothing. End of, say goodbye, the end. Coming to terms with that is something I'm still doing now. I was one step from my ultimate goal, which was to lecture students. It wasn't until it was snatched away did I realise how important my career was to me and my identity. I felt hollow and desperately sad - and it was something that I don't think people could really understand. And I'm going to admit to something else which embarrasses me. The people who were my peers, at the same level and place as I have now become lecturers, readers, professors now. And here we go I'm going to say it, I'm jealous. There's logic to that, but I need to get over it and become satisfied with my own life. I have a three year old little boy who brings me more pleasure than I can put into words. I have time to be able to think hard about what I want in life. No I can't have what I wanted pre TBI, but I must find what I can do now, within my new limits. Of tiredness, and memory problems, and sensitivity to noise. Some of what you wrote really stopped me in my tracks "it's more than good enough to just be me as I am now, even if that is different to the capable and (admittedly) rather work-obsessed 'previous me'." - that, THAT is what I need to do and become. I want to be happy with the person I am now, rather than constantly looking back at the person I was before TBI. I suspect that I look at a lot of it through rose tinted glasses anyway - things were good back then, but I still have arguments, discomfort, insecurities...it is not easy Jen, and that's an understatement! I remember a good friend of mine asking me what's my biggest achievement. I started with my degree, my PhD my prize for this presentation I did in the US, this research result and she interrupted me and said "no, you're wrong. Your biggest achievement is having your severe brain injury and recovering from it to where you are." I straight away said no, no, but now, after a good few years then maybe she had a point. Lonely is a feeling I've had for a long time and I'm starting to realise that talking about it helps. So thank you Jen X

Headshrink
Headshrink in reply to saville75

I have goneback to my job as a psychiatrist tgrough force of will as they were keen to pension me off at 47!. I am managing well despite everyones misgivings and i needed to prove that to myself and them!so i didnt have regrets later. Now im reaching a point where im thinking is this really what i want now?. I feel like i should leave everything behind and start afresh but god knows what I would do. I am hoping life will show me as imove forward, thats the joy of the unexpected. So i remain curious...

I think the aim to remain curious is something we can all get behind 👍

Yes. I have found mindfulness really helpful and curiosity is one of its key elements, i can highly recommend it

Yes, I find it very helpful too. I did an MBSR course about 18 months ago, and also have the Headspace app on my phone. I meditate when I take breaks during the day.

So glad you found something helpful Lucy 😊

I recognised something of myself in what you've just written - you see while I was still married, I went back to college at 40 and got a first class maths degree - hence the later career path. College prize, published paper, and a deep pleasure in stretching my brain cells later, I attacked a new career in mid life with an enthusiasm my contemporaries found quite bemusing. Ironically it was only a couple of weeks before my brain injury that my firm had given me the position I'd been aiming at for ages, and a lovely rise and bonus....

The impact of my brain injury has been roughly like aging about 15 - 20 years overnight ( I compare notes with my mother a lot...) So yes, I really miss that sharp and successful version of myself.

So we both have new challenges, you have motherhood, where while it's challenging (to say the least!) it's very difficult to have any measurable success day to day I think? And I need to navigate the vagaries of early retirement - when even typing the word makes me cringe a little.. 🤣.

Are we holding up a mirror to a society that values paid work above everything though?

I do however sit on the bus and try and work out which pensioner I would want to be ... At the moment I'm veering between the smiley one, and the one with the doc martens and black t-shirt with the campaign slogan 🤣. It's a bit of a work in progress...

But as I said, I really am realising that it is perfectly good enough to just be myself, without the need to conform to other people's expectations or needs. There's a freedom in that.

If it's any help, I used to think college was my best achievement, but even pre brain injury, I've looked at my son and his new family, and thought that whatever I did manage to contribute to his development along the way, that would be the best thing I've ever done 😊

Jen x

I love what you're saying Jen, if you don't mind me saying. One little anecdote for you, when I was in my hospital bed a couple of days after I started talking again after my TBI and I beckoned my then boyfriend - now husband - to me. And asked whether we could have a baby. I knew I always wanted children but had never actually thought about....now. Bemused he agreed but said that maybe in a wee while ie I get a bit better first?! That was all I wanted and became a bit of an obsession. Why? My age? 33 - or my TBI? Anyway it became my mission. About 5 years later I was feeling utterly despondent with life and the way I'd become. And my husband said something to me I will never forget. He said - look, lets say you hadn't had your TBI and things had carried on as normal. Where do you think you could be? I said how a good friend who was now a professor had said to me that I'd likely be a senior lecturer. My husband said OK, then that's your position and you wanted a baby the way you do now. What would you have done? I didn't even have to think. I said I'd give it all up if need be, to have a baby. That made me realise yes, things could have proceeded on paper the way they do, but maybe I and my wants in life would change...8 years after I asked my husband, I gave birth to my little cheeky, loving, stubborn, inspirational lad. Lucy x

Oh Lucy, that's wonderful, and perfect on several different counts Xx

You've made me think, it's not the world that needs to change, it's just the lens we choose to look through at it?

Bear with me here... If say, I'd been given the chance to look back at my life and make changes with the benefit of hindsight - and compared my career life with spending more time with my mother and granddaughter at this particular point - I wonder which I would choose really?

Oh dear, all too much for this time in the morning.... tears in my eyes now 😊

Incidentally ( re the other postsI I just use meditation as a practical tool in my kit to manage life. I used to grab some of the time on the train in the morning for it originally, and then found it helped me cope with the TBI headaches and fatigue. My day does go better when I stop and practice. The neuropsychologist that did my testing stuff recommended doing a Mindfulness/ MBSR course originally - which I went to (in some trepidation initially) which was very worthwhile. There is an idea it helps with neuroplasticity I think.

Jen x

Ah see now Jen, if I were given the choice you describe there, I'm not sure that I'd pick this option. Knowing me (and my TBI has made me analyse me intensely) I'd probably remove the TBI and have the determination to proceed my career and think I could have a baby too. Maybe in time I'll change my opinion on that one, choose TBI and become satisfied with my current position. Hmmm who knows. You know, so many people, SO many people have mentioned Mindfulness to me. Maybe I should look into it and give it a go. All those people, both professional and non-professional, can't all be wrong can they?! L x

Oh I get that entirely! Would rather have not had the TBI at all!

I think I said that because a close friend of mine from college and I have been ( in our customary maths habit of problem solving / analysing Everything* together 😂) pondering lately how the Covid thing has made us rethink our values and what is really important to us - and it's the simpler things now that seem more important. However, that said, she doesn't seem likely to jack in her rather successful career any time soon 😂 and if the TBI hadn't happened, I don't suppose I would have done either. I don't do that 'everything happens for a reason' thing. .. I was just wondering if at the end of the day, I might treasure the extra hours and minutes of time with my Mum and granddaughter more than the kudos, buzz, and cash from the career - super difficult one that!! I'm wobbling both ways as I type this 🤣 ( another good friend's mother has just died - so I suspect the general mortality of mothers is probably also on my mind).

I just think of meditation as breathing and concentrating, really nothing more exciting than that. But I noticed early on that it reduced ny blood pressure significantly, which I was rather impressed with.

The free basic course on the Headspace app is a way to test the waters, so to speak... Though I found the MBSR course/ group very supportive.

The trick is finding the right teacher/ voice on an MBSR course I suspect. I needed someone quite straightforward.

Some people here have said it really isn't for them as well. But I know that straight after the course I was enthusiastically recommending it to everyone in sight 😊

Jen x

(*To wit - a divorce, and dead parent each, miscellaneous other relationships, and the growing pains of our offspring, alongside politics, career progression. ...you get it...)

Covid has made me think differently too - embarrassingly a coffee made somewhere other than my kitchen - that's not to have it made for me, more the milky frothy business in a nice mug. God, that's such a middle class thing to say, there are people out there struggling to eat and feed their children - you know the whole school dinners at half term...yeah it's the pros and cons of TBI. I was interviewed recently by a vet group called Vets - Stay, Go or Diversify? on Facebook and I backed myself into a corner and struggled with the idea that maybe my TBI had allowed me the time to paint and that maybe the brain injury was a......good thing? No, no, that can't be right. But maybe there are good things that have come from it. As you say, time to look after my little boy which wouldn't have happened had I still had my successful job. Nope I wouldn't have been able to. Oh and I'm not an "everything happens for a reason" person, I'm an "things happen if you make them happen then work damn hard at it" person! Oh and my counsellor lady recommended Headspace - I downloaded it on my phone and never touched it. Hmmm maybe I should change that... L x

Frothy coffee, in a cup , with a pattern on top preferably, yup! 🤣😊👍 But yes there's appalling hardship out there 😱 and hard to know where it is all going to go at the moment really. Finance-wise I'm well aware that I'm 'lucky' to have had the BI relatively close to the end of my working life ( when I'm not cursing it of course - as I was so not going to stop working). I totally relate to your work damn hard comment!

No- one is lucky to get a BI, but I suppose that because of our resilience as human beings, good things can come out of cataclysmic life changes, and it has to be ok to recognise any that show up? I suppose it's the old 'make lemonade when life throws lemons at you ' not in a gross jolly way, but that after being forced into a life event you don't want or didn't anticipate, it can be possible to find unexpected personal strengths, or to re-evaluate what is meaningful and what isn't? Or simply start to find joy in just being alive, or drinking coffee sometimes 😊

I've had different turning points imposed by events out of my control over the years (as does everyone I suppose) and though at the time they were devastating, I do like myself better now for having lived through them - but only with hindsight....

Hang on in there

Jen x

Yeah it makes me think of the lady who frames all my canvases and has heard all about me and how I'm where I am. Poor lady has experienced my disinhibition effects closely! I'll never forget what she said to me a mere few years after my TBI. She said that it's not where you are now that matters, it's how you got there - the twists and turns and hardships of life that you live through and allow to change you. She's right - it's living the experiences whether they be good or bad and as the neuroscientist in me points out, the neuroplasticity in the brain that changes us all the time and dramatically changes us the instant the TBI occurs... L x

Oh yes - do try out your Headspace app 😊

J x

Doing things that aren't connected to the supposed 'real' world helped me to reconnect with my identity to the point that I now believe that life has been a series of events that disconnected me from myself including spending my whole adult life with a TBI.

Playing musical instruments (ones I can't play as much as the ones I can), drawing (I'm terrible), going fishing (and not setting the fishing gear up), larking about on a rope swing (at 50 something), inventing elaborate scripts and stories for my grand kids; have all helped me to 'remember'/reassemble the real 'me' over the years.

Transcendental Meditation has been a game changer over the past few years. When I'm consistent with it, I seem to fit into my skin a lot better instead of feeling like a toddler wearing a 'man suit'.

That said there are times (usually a good indicator that there's a depressive episode in the post) when I ruminate on my loss of place in the general flow of the adult world. It really took a lot of difficult work with a Clinical Psychologist with decades of Brain Injury experience to explore what he calls Loss and Adjustment, a lot of 'dark nights of the soul' were involved but a few years down the line I'm feeling better for having done it.

To be a bit Victor Frankl(ish) about it, I've found some meaning in my TBI, even if at times it's just having the opportunity and time to be 'Magical Fairyland Grandpa' with the grandkids.

saville75
saville75 in reply to Glenquoich

You know Glenquoich, I've had meditation suggested to me quite a lot - byu my friends rather than professionals - and I've tended to politely smiled and never followed it up. But the way you're putting it there makes me wonder whether maybe it'd be a sensible and helpful thing to take up. Thanks for the heads up about it. As young people say nowadays! Maybe I'll look into it X

Glenquoich
Glenquoich in reply to saville75

I've tried various flavours of meditation over the decades; guided, kundalini, mindfulness, transcendental. All have been helpful to some extent. My own preference has been transcendental because of its simplicity, you can do it sitting on a bus or train (not that I'm on public transport much these days) and a two syllable mantra repeated over and over is much easier during the worst of my brain fog. The biggest effort is in giving myself the time to sit still for 20 minutes, which can be difficult when my brain is on a spin cycle.

It's expensive to 'learn' compared with the other methods. I took it up in 2010 as a misguided effort to 'control' an addiction problem but found it little use until after rehab in 2012. I picked it up again a couple of years ago when my wife took it up to help her with career stress.

If I remember to be gentle on myself and avoid the 'all or nothing' mindset, the periods of time where I'm meditating regularly seem to be better. I have a calmer sense of self at these times.

That sounds like my experience to, except the other way round, in that I notice when I skip meditating that overall I feel worse than when I'm meditating regularly 👍

Maybe my explanation didn't come across too well.

The recommended TM practice is 20 minutes twice a day, if I manage once a day 3 or 4 times a week, I feel much better provided I don't beat myself up about not meeting the recommended frequency. Not quite the standard I would like but good enough.

I've been trying to learn that 'good enough' is better than 'all or nothing' and my default mindset tends towards the latter.

That makes sense - 'good enough' is what I tell myself all the time these days - I do have to keep reminding myself though.

Even three x five minutes meditations seems to make my day go better - and I really don't understand why. I notice that the longer I've been practicing though that I'm more likely to choose to do 10- 15 minutes at a time.

I am coming late to this conversation and can't pretend to have read all the responses, although I will try to get through them because what I have read so far has been really interesting.

My TBI was in 2006 and your post resonates with me. In just the few short seconds it took me to fall, everything changed and I was no longer the same person the minute I hit the concrete.

Physically I recovered and I can walk and talk...can even do the two at the same time...but there is a distinct disconnect and I am not the same.

I am always frustrated that I know the things I used to know but I simply cannot function in the ways necessary to maintain my former life and I became unemployable and socially inept. I have anterograde amnesia which I have come to believe actually protects me from at least some of the pain of my new reality.

I was horrified when I realised just how much of personal identity is wrapped up in what we do for a living and I wept when someone asked me "what did you used to be?" She was enquiring after my work status but it was like a knife to the heart. So much of who we are, the kind of life we lead is deeply entwined in what we do (career) and to suddenly be thrust from socially confident and energetic go-getter/go-to person leading a team and responsible for budgets in the millions, to a shadow who cries when she can't figure out how to get the wet stuff to stop falling in the shower, was unexpected to say the least.

It took many years for me to even start to accept my new reality. I tried and failed miserably to return to the workplace but knew I needed to find something to fill my days because without the structure they days just passed by in a blur of sameness. Although I hadn't an artistic bone in my body pre TBI, I discovered that I did in fact have a creative side and over the past few years I have worked hard to develop that. While I can and do make some money from my artwork, unless I am suddenly "discovered" (not sure I'd want it anyway so its lucky that I've probably equal chance of that happening as I have of winning millions on lottery LOL) its never going to replace a salary, but it give me purpose, keeps me out of mischief and does give me something to show for my day. It also gave me the opportunity to "give back" by running art sessions at our local hospice (currently on hold due to covid of course)

During this journey I was extremely frustrated by a psychologist who decided I needed anti depressants. I was furious and refused to even consider meds as I knew I was not clinically depressed, just changed. She just didn't understand what I was trying to say and so in order to satisfy her, I agreed to a psychiatric evaluation which backed up my opinion and meds were never discussed again. I was instead advised to go and lead a simple happy life...Seems its that easy :)

I may not have all (or any) of the answers but I decided that instead of struggling to find my place in the world, I would just "do me" and let everything else handle that. So far it seems to be working okay ;)

saville75
saville75 in reply to iforget

Oh iforget I can so relate to you. That second, the second I fell, my body turned and the back of my head made hard contact with the concrete floor. Everything changed, everything. I physically recovered too, though my brain I believe (hope), is still undergoing plasticity to modify parts of me. Your anterograde amnesia - maybe you're right and it somehow protects you. I can't remember what happened to me that night, I've only found out from people I was with. They didn't see me fall, they *heard* me fall. Initially I found it really hard that I couldn't recall it, but now I'm quite glad - don't want that memory thanks, things are tough enough.

You're also so right about the career thing. This has made me realise how it defined me. I researched the brain, I'm fascinated by it, inquisitive of it, I think it's the most complicated thing in the universe. Yet I can no longer research it. It makes me feel like curling up into a foetal position and yearn. I desperately wish I was still able to buy a coffee, drink it at my desk, go into the lab, set up my equipment and set up my experiments. God, there were days when I'd used to tire of it and moan - what was I moaning about?

I'm a short distance now into accepting my new reality. I'm trying to combine my two passions - the brain and an artist. I've opened an online forum with a psychiatrist friend called cRxeate. It's for doctors, vets and dentists who create things in their spare time (crxeate.com) and has become popular. Which is great. But I still yearn the preTBI me so much. It's great to hear that you've started being artistic! You don't need to be "discovered" - if you enjoy doing it and it fills your day and get some good feelings when you do it then carry on! This whole being discovered thing annoys me. Especially when the "discovered" people don't in your eyes live up to the idea. Yes I'm talking about you Mr Hirst and you Ms Emin...

I hope you don't mind me saying this, but your so called psychologist needs a sharp kick up the backside. I actually can't believe they were convinced you needed antidepressants. They're not doing their job. They actually would've been putting you (and other patients) at risk by doing that. I'm so glad you proved your point on that one. I can only hope it made them have a think about it - who knows.

Finding your place in the world. You and me alike - I long to eventually be able to say I can find it.

X

Lucy good luck with that. I am sure determination will get you to where you need to be. Finding where we *need* to be, rather than where we "want" to be is all part of the challenge of acceptance. Understanding that life is journey and where we need to be right now is not necessarily where will need to be in another month or another year. Sometimes we can rush through a chapter and other times we need to linger, but even though it sometimes doesn't feel like it, we are still moving along...even at snails pace. My memory issues forced me into keeping a detailed journal and that actually helped me to notice teeny crumbs of progress that I would otherwise have missed.

I had a quick look at the cRxeate link you posted. It sounds like a great venture. I have come to realise that having a creative outlet is vital for me ... but I think it is important for others too - and maybe especially those in high powered positions - to have some kind of outlet for self expression. I wish you every success with that.

saville75
saville75 in reply to iforget

Thanks for that iforget and same to you, I hope you find the stability and security in knowing the person you now are - but our lives are a work in progress, so it will continue to change x

Glenquoich
Glenquoich in reply to saville75

Thanks for the cRXeate link, I've a couple of doctor siblings and some vet friends that have always had a creative streak (art and music) who will, no doubt, be interested in the site. I had a good surf around the site. I'll pass the link on.

I even noticed you had an event in one of my 'sanctuaries' whenever I'm in Glasgow; which is less often these days.

It got me thinking (which can be dangerous at times) about the numerous medics I've encountered over the years throughout my 36 year TBI history and that, in the main, those that had a creative streak seemed to treat me more like a human being. In particular, my psychiatrist when I was in hospital after my 2017 breakdown, having just learned that I'd been carrying the post TBI effects unacknowledged for 33 years. He plays guitar and violin in a jazz band. I had a couple of guitars brought into the hospital (private sector) and he took some time out after his shift to sit and 'jam' with me on the guitars for a couple of hours, a few times during my month long stay. He told me he'd learned a whole lot about me during these times with rarely a word spoken.

In fact, he's the one who has encouraged me to get on with writing and recording my album of songs about living with Brain Injury and metal health issues, that had stalled for years at that time.

I've set a release date for March 2024, 40 years after my TBI (funding on the horizon now) and it's became my primary purpose these days.

It's what keeps me going during the darkest of times.

saville75
saville75 in reply to Glenquoich

Oh Glenquoich I love that - your psychiatrist jammed with you with your guitars where you both hardly said a word. I think that means a lot and is overlooked by so many people in the profession. My clinical psychologist when I got back to Glasgow - I'm going to say her name as she helped me so much Nicola Goudie - she listened to my story, my life, what I care about. She then made it one of her primary goals to help me to paint again. And it worked and that related directly to my self esteem as I started to create canvases again and feel as though I was starting to achieve something.

If you could pass on my link to anyone who you think would be interested would be great - once the covid has died down then we're hoping to meet up face to face and have workshops...

And you'll be releasing your album in 2024 - it sounds as though that's somehow giving you direction and a goal - best wishes to you and I hope you get it out and that it's rightly appreciated L x

I feel exactly the same saville xx

I find it such an enormous relief that there are people out there who feel a similar way. My innate loneliness and hollowness is starting to lessen a little. It's strange how much of a relief it is to find others who can relate to you...

Now I'm pressing the like button back!

You're right - such a relief.

Hope you keep posting 😊 x

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