Being British often means having a stiff upper lip in tough situations, and trying to say the right thing so you don’t cause offensive. I would definitely say that I fitted into this culture and actively tried to be a good example. I really did feel this was the best way to be, and I still think it has merits and find I naturally adopt it . But actually it’s not always the best answer. I wanted to shout “Don’t guess what I need is for you to be polite, just tell me the truth.”
After my brain injury I initially couldn’t recognise the changes in my personality. So I would ask people what differences they saw. But many people would assume that any “negative” feedback would offend me so they told me I was fine.
But with the polite British culture, how could I explain what I need this time is pure honesty. I believed that if I could identify what had changed I might be able to work on it to get back to being me. I didn’t have a plan for how I intended to do this but I’d always believed that if you want something enough, and you’re prepared to put the effort it, you can achieve it.
So it was a long time before anyone dared to tell me that having a conversation with me was like I was speaking via satellite with a time delay. They would be able to see the thoughts on my face and then I would finally speak, and even then it was a bit slow. For me though I felt I was answering immediately like you would in any natural conversation. This happened because my speed of processing had been hugely affected. Deciphering what they were saying and replying was taking so much longer, but I wasn’t aware of it.
I wanted people to admit that they could tell I wasn’t OK.
Instead some tried the positive approach and would try to look at it all from the brighter side of life. But all that did was make me feel guilty for “wallowing in my self pity.” That I should be using that British stiff upper lip to put my feelings aside.
“You’re lucky, it could have been so much worse!”
Just because I came out of that accident in one piece and I was able to walk unaided, it doesn’t mean I felt I was lucky to have a brain I couldn’t trust anymore. Whilst I understand that I could have had a physical disability or even died, when your brain isn’t behaving normally it’s difficult to feel lucky. Particularly as you don’t know how long your recovery is going to take and what the future looks like.
“You look fine.”
No I don’t! And I knew I didn’t. My reflection looked different, it was in my eyes. It looked like no one was home, and I’d always had very expressive eyes. I’d always been proud to have inherited from my Irish Mother “the Moynihan look.” This was the look that would be thrown and even without words you knew your goose was cooked! Anyone who knows an Irish woman knows what I’m talking about. But all emotions were easily displayed through my eyes which I hoped made people see when they were welcome. It was more like looking at a fish than my refection.
“Try hard and keep practising.”
Wise words, and of course it is the best course of action. But I was so fatigued that concentrating on anything took so much effort. I am guilty of being lazy at times, but this is different. And even if I had energy were was my motivation? Some days I just didn’t have the drive to do anything, and that made me feel terrible because as I said before, I believed if you want it and put in the effort it will happen. So that meant it was my fault that I wasn’t better.
“I’ll do that for you, you go sit down and rest.”
It’s so kind hearted of people to try to help and do little things for you when they see you struggle. But as I was struggling with my confidence with simple things like carrying 2 cups of tea, the only way I could build it was to see I could cope. Living with a brain injury you have to take each day as it comes. Just because you could do it yesterday it doesn’t mean today you’ll do so well, and visa versa. It can be challenging to be patient with myself so I understand it’s can be hard for others to be patient, particularly in today’s super fast world. But I can be my biggest enemy so sometimes I need others to just have my back, not take over.
However, I realise us survivors ca be difficult sometimes. So huge respect to carers. Read Support Carers where I explain how their lives have been turned upside down too.
But people only know what we need if we tell them. What things would you like people to do differently?