Chapter 18 #2
‘I don’t mind,’ Amy said. ‘I think what I struggle with most is people’s attitudes towards me.
Friends, well not close friends but acquaintances or colleagues will say things like, “Oh but you look so normal,” like they expect someone with a brain injury to be fully incapacitated, unable to walk, talk, feed or dress themselves.
And of course there are those who have suffered horrendously with their injuries, much more so than me, so I’m very lucky in that regard.
But a visible injury or disability is so much easier to understand and empathise with.
No one can see my disability so they just expect me to carry on like I was before I had my stroke.
They’ll say things like, “Are you back to normal now?” which is just offensive, like my struggles make me abnormal. ’
She shook her head and took a sip of water.
‘In reality, this, what I’m dealing with now, will probably always be my new normal.
And eighty percent of the time, I’m fine, I don’t feel any different to how I was before my stroke.
But when I’m tired I speak a lot slower, I find it difficult to form the words and I have to concentrate really hard on getting each word out.
That makes me feel very self-conscious and not want to talk at all, unless I’m with these guys who understand or very close friends or family.
At work, I really struggle towards the end of the day and my colleagues just don’t get it.
They see me chatting away normally like I am now at the start of the day and by the end I’m stumbling over my words, stuttering, and I know some of them think I’m putting it on.
And that’s what’s so great about workshops like this and making friends like these two – they get it like no one else does. ’
Flick smiled at that. The workshops weren’t just about giving participants an artistic or creative outlet, they were about making friends or talking to others who were in the same boat and that’s why they were so important.
Chloe nodded. ‘I’m the same as Amy in many ways but I will often substitute one word for another completely unrelated word.
Ordering a cheese sandwich, for example, would likely turn into a request for a coathanger sandwich.
It’s just one word in a completely normal sentence but it obviously stands out like a sore thumb.
Everyone finds it really funny when I do it and that used to upset me.
Now I can laugh at how ridiculous it is too but sometimes I find it really frustrating because the right word just won’t come.
Again, it mostly happens when I’m tired, but sometimes I can surprise myself.
Sometimes I don’t even know I’ve done it until people start looking at me strangely and I have to figure out which word I’ve said wrong.
But like Amy it’s people’s expectations that are the hardest to deal with.
They see me hiking up mountains or running marathons and don’t expect me to have trouble doing something as simple as talking. ’
‘You two have hit the nail on the head,’ Michael said.
‘I can do everything I could do before my motorbike accident. I walked away with barely a scratch on me so everyone assumes I’m fine.
I don’t even have language difficulties like these two lovely ladies.
Everything on the surface is perfect. But I get so emotional and tearful over the slightest thing, which apparently is very common for people with brain injuries.
I get told to man up, or that real men don’t cry, and I’m ashamed to admit, before the accident, that I thought it was weak to cry as a man.
Now I can’t seem to stop. It is getting better, it might only be two or three times a week that I cry now rather than every day, but it’s the tiniest thing that will set me off.
I can’t even say I’m depressed, not really.
Most days I’m absolutely fine but then I’ll go to grab a banana from the fruit bowl and realise I ate the last one the day before and the tears will start.
It’s the most ridiculous thing. But people’s attitudes to a grown man crying are just shocking, I’ve literally lost friends over it.
Charlie here is a real help. When he sees I’m upset he will cuddle up to me or put his head on my lap and stroking him helps, it really does.
And having Amy and Chloe to talk to. They get it. ’
‘I can understand having Charlie helps, I think we all need a Charlie in our lives,’ Flick said.
‘He’s been a godsend,’ Michael said, stroking Charlie’s head.
‘I think that’s the thing about brain injuries, they affect everyone so differently,’ Rose said.
‘There is no one size fits all. Well, thank you for sharing your struggles. Talking about it really does help people to understand what you are going through. So today we are going to be painting with acrylics and, if you’re willing to get your hands dirty, I thought we could all use our fingers instead of brushes.
Although if you prefer, I have a load of different-sized brushes you can use instead.
You can choose to paint whatever you want, perhaps something that represents your frustrations with your injury or, if you don’t know what to paint, I thought we could all paint our famous wonky tree outside.
You can paint realistically or use bright colours, you can paint in the style of Monet or Picasso, whatever you choose. There is no right or wrong today.’
‘I love the idea of finger painting,’ Amy said.
‘I do too,’ Chloe said.
Michael shrugged. ‘I’m happy to give anything a try.’
Flick smiled as they got their paints ready and started using their hands and fingers to create their masterpieces, laughing and squealing at the feel of the paint. She felt an ache in her chest, wishing Luke was here to see this.