Everyone had gone to bed last night and as always I wasn't too tired. I got thinking about my life. How it changed 15 years ago. I went into my studio with a plan. I haven't been painting for a very long time - years - but that didn't enter my head. I mixed some basic colours then did this. It's my brain. The top is the back of my brain where my head hit concrete. The bottom is the damage that was done when my brain was rammed into the back of my skull.
I'm here this morning feeling hollow.
I'm calling this work "1am, it's official my brain is fucked, 2024"
Written by
saville75
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Thanks to you Painting-girl. Yeah, on the up side I have a degree of satisfaction that I got back into my studio. a good friend at the school gates has asked whether I'll paint her two little ones for her husband as a present. Once we've agreed on the photos to use, I'll be back in the studio full time and I just can't wait for that!
In terms of my op and weight loss, I set myself 10 stone to lose. I have lost 5 stone so I'm half way there. But I will say that it's more of a struggle lately to eat the right type of food and stick to a routine. I may as well be honest here, my menopause is definitely making things harder, no question.
It's also proving difficult for my long suffering husband. We talked about it last night and it was hard to hear. But I need to put a plan together for myself, aimed at my goals in life, one of which is a close, comfy, loving relationship with him...
Hey there Cat thanks for writing. Yeah I *am* in a bit of a low patch just now, but I'm guessing we all have those at times. I'm continuing to lose weight, but more slowly as time goes on...
I'm guessing the 'novelty' of your phenomenal weight loss so far is wearing a bit thin (no pun intended) and the willpower is exhausting.
Keep your eyes on the prize m'love, with help from short daily walks, regardless of weather, for lifting your spirits with a boost of feelgood hormones (so underestimated).
You're a talented lady Lucy (as you well know) and I look forward to seeing your upcoming portrait assignment in the near future... Xx
Yes WonderingWanda you're right. We. Know. And thanks goodness for this forum which I only really discovered years after my TBI. Yes I'm still here and so are all of you. I need to pick myself up and bloody try again. And again and again and again and again...! x
I think you and I are in a similar frame of mind at the beginning of 2024. A 'getting a bit fed up of this' kind of frame of mind. My accident happened when I was 27 years old, and in a couple of years I will have done 27 years post accident as well making the fact that it still has an affect on my life a little bit annoying to put it mildly. If it makes you feel any better, I too use the 'f' word to describe my brain and lots of issues connected to it because there doesn't seem to be any harsh enough words in the English language (or perhaps any language) to describe what happens to you following a brain injury. I also use art, painting, writing, doodling, singing, listening to music etc. to cope with life now.
'Cope with life', listen to me, why should I need things to cope with life almost 25 years post accident? And that's where the frustration comes from.
In your painting I can see the crosses of red beneath your brain and it looks chaotic and relentless to me which in my opinion is a fair visual to portray my post injured brain on certain occasions. I think of myself as a car I bought from a scrap yard which works, ie. You can drive it, but some things just either don't work ever or only work occasionally in the car. For example, maybe sometimes you have to drive it in reverse all the way to your destination or it only plays what it wants to play on the radio. And sometimes it is the boss of you and you seem to have less control over it and the reason that sounds like a horror story is because that is kind of what life post brain injury is to me or has been sometimes, a fucking horror story.
Anyway, I'm waffling on as always, let me finish by saying that like you I have accepted that my brain is a bit fucked and is not going to suddenly get better. But I also think that I'm or we're still alive and capable of doing things evety day so I recommend you accept the fucked up ness of your brain but don't let it get you down too much. It hasn't stopped you from doing everything you want to do and provided you keep up the fight it won't in the future either.
Oh Pedal2 you're so right about the f word. Since I had my little boy, I've tried to filter my language. Yet before him, the f word was a common part of my vocabulary! When it comes to describing our situation it's so hard to find the words that sum it up. When I was talking to my husband about this last night, I fell over my words, silence, hesitation, groaning...yep, there are no words to adequately describe what's happened. When I'm in a better frame of mind I can see that it's impossible to describe it to someone who hasn't experienced it. But my god it makes me feel so lonely. Except when I'm on this forum.
Can I say, I love your car metaphor. It works so well in terms of describing how it is for us. Thanks for that, I may well use it when I'm talking to people about things 👍
yeah good painting of my head also .. concrete at the back and a very altered front 🫤 .. I didn’t have the same impact as you plus your coma and skull op but I am very different then before my fall .. emotional removed , slow on picking up information , impossible in noisy places , reluctant to leave the house ( but I do I make myself) …. The list is endless and I’ve never really written it down but I will do later on when I’ve got out if bed 🤪 I don’t have any words of wisdom , I know with the physical side of my injury’s I just kept working hard at improving it plus 3 ops on shoulders which was bloody hard work but they did improve with the downside being the more I did the more my legs had to work and I knew they weren’t right .. outcome 3 months pain in hips .. X-ray fine , so mri know to see what is actually going on … all of this and a strange brain 😢 I’m feeling I think similar to you and wish I could get others to see how it actually feels .. sorry not. Words of advice or anything just I also am struggling and very much relate to you painting Sue x
Yeah Teazymaid I'm not a fan of concrete, it's done some real damage in my life and it sounds like it's done similar to you. Sorry.
I can so relate to what you're saying. If only it was possible to let others around you sit in your shoes, just for a few hours. If that were possible it was make things so much easier all round. My husband asked my so many frustrating questions when we talked last night and I said "if you knew what it was like to be me then you'd get it mate, you really would..."
I did just smile at your husband many frustrating questions …. 🤪 yes they don’t understand anything really but to be truthful I can’t actually describe how if feel just like I’m in someone else’s body 🤔x
Hmm, proactive - not sure what my brain looks like but it certainly feels like that most of the time. I don't understand "the normal world" much, nor how it seems to expect me to realise what I'm supposed to do or how I'm supposed to react to it.
But then it doesn't understand me because I look normal (at least it seems that way) and haven't got 3 heads .... though somebody at Headway meeting last week suggested 2 heads might be better than 1!
Regards fucked, I sometimes think that would be nice but really I just crave a bit of human warmth.
Thanks so much for writing Michael. The whole brain injury that people around us can't see, is such a hard thing isn't it. I've had people say to me when I tell them, that they'd never have known. I suppose I should take that as a compliment. But it leads to the question, what *is* normal anyway?!
I crave human warmth too. So much. If it wasn't for my little boy who flings his arms around me, I'd struggle to live X
Hi…my daughter has a brain injury and I think your wonderful painting summed it up. It was a big uplift to me so am sad you are struggling but just wanted to point out an opposite side of the coin that you can still help people even when you feel rubbish!! Thank you
Thank *you* so much Fishsoup for writing to me, it means so much. I've just had a session with my counsellor who specialises in brain injury and I've talked through my difficulties with her. The fact is, we're all in this together on this forum. It's such a relief to talk to people who "know it" and know what it's like to have had a TBI. Thanks for your reply X
I also wanted to put a short film up here. My name is Lucy O'Donovan and when I had my TBI, I was actually working over in Melbourne. I was researching - wait for it - brain injury! Oh the irony eh? Anyway this is my boss in Melbourne receiving money to research brain injury further. I've just heard from him that his group are concentrating on brain injury because of what happened to me back in 2008
I guess a lot of us have difficulty at night. Please don’t feel hollow after painting this. As someone who suffers like you, I am encouraged by you taking your brushes and creating this. Maybe you could paint more. I for one would buy a painting like this as I would truly appreciate and value it for its deep meaning and how personal it is both to you and to me and others who may see it and relate to it.
Saville, that is such a great picture of what happened to you. To me this picture tells the world about your talent, and most importantly it speaks of understanding - you know and understand what happened to you, and you can describe it. That took a huge level of emotional literacy, and your words are shapes and forms made in paint. Absolutely brilliant.
This made me think - what would I have to paint? I guess I would have to paint my head, and then make a hole in the side of that head, and have a couple of arteries emptying out into a scarf and (orange) cotton top. The inside of one ear would have to be full of blood. And then a couple of layers of stitches going in to close it all up. There is a nerve on a wrist which doesn't stop reminding me of its injury. Don't quite know how I would do that.
Thank you for sharing your 1am experience. Sorry you are feeling low. But delighted you took up the brush. Go back to your studio and speak to us again, please - this 1am bout has made me think. No, the family don't really understand what is going on, do they. Mine is kind and intelligent. But no, they don't get it.
I am having an unusually good day today. After a patch of bad and depressed days. This too will pass. Thank you for being there.
Hi thank you for sharing your art and I’m glad you’ve got back into your studio even when you’ve been feeling crap. Like others, it’s inspiring to see you create anyway, despite all the odds stacked against you. I’m a writer and for me, writing always makes me feel or cope a bit better- I just have to get past that feeling of thinking I’ll feel better ‘only after having written’, so I then never actually get down to writing, a ‘great’ way of procrastinating. But when I just get my bum in the seat and write whatever comes out, good bad or really crap, it doesn’t matter because I’ve shown up and I have tried - and invariably I will feel at least a teeny tiny bit better.
Good luck with your future projects and with the weight loss. You’re making progress and that’s all that matters.
Oh, I watched the video of your boss. It must be so bitter-sweet for you, to know that he redirected his research because of your TBI. Wow. To think that potentially lots of others may benefit from that change of direction is a bit mind blowing just for me hearing about it.
Please keep creating and all best healthy wishes to you.
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2nd CT
why does my doctor refuse me a brain scan?
brain
