I’m a brain injury patient. What do you expect?

Michelle #jumbledbrain — Fri, 16 Sep 2016 11:57:21 +0000

Life after a brain injury can be unpredictable, at best. Some days I’m on top of the world and you have to tell me to slow down, and other days I’m apathetic and lethargic. I admit for the casual observer this is confusing, and difficult to deal with. But actually I don’t expect the public to understand, as until this happened to me, I can honestly say I didn’t either. It’s those who are in the medical/healthcare industry I get frustrated by.

Don’t assume I know where to go, and then answer in a tone that says “you’re an idiot” when I ask for directions.

For anyone hospitals can be confusing to navigate due to their sheer size. Poor signage and corridors that all look the same, doesn’t help either. But I’m amazed how often staff can be dismissive of you when you ask for help. I know hospitals are busy places where everybody is under immense pressure, and it’s a challenge to remain patient with everyone when it feels like you spend all say having to go the extra mile for them. But I’m an individual who doesn’t want to be a chore, I’m not stupid I just need of minute of your time and a friendly smile would go a long way.

I’m sorry but sometimes the standard communication procedure doesn’t work for me.

If I’ve just answered a standard question like “what’s your reference number?”, with “I didn’t know I had one, I’m sorry I have a brain injury and I probably missed it”, don’t continue to tell me off as “it’ll always be on everything we send blah blah blah…..” with that disapproving frown on your face. Would you behave the same way if I said “I’m registered blind so I couldn’t read it”? Sometimes I can’t concentrate enough to see there are details I need. I’ve lost count of the amount of times I thought I’d received the same letter twice from the hospital. It would take my partner to point out it’s completely different from the previous and about a different matter.

You’re the expert, don’t ask me “what do you want me to do?”

I had one appointment with a Neurologist who had never met me before. He took one look at me when I was explaining about my double vision. He leaned forward and said, “Yes but want do you want me to do?“- I don’t know what I want you to do, because I don’t know what you do! He officially discharged me after this one meeting. Also he cancelled further follow up appointments I had booked with the ophthalmology department. He was so arrogant he felt sure it was nothing to do with my eyes. I mean I wouldn’t want to waste anyone’s time would I!

There are thousands of amazing people in the industry who are worth their weight in gold for what they do. I am thankful for all the amazing people I have met along the way, and value their input and kindness. As for the rest of you, please try to use some empathy and see what it’s like on the other side.

Just to make sure you know I’m being fair to those in the medical industry, you can read about my examples where some tried harder in I don’t understand after my brain injury.

I'd love to hear your good and bad experiences. Is there someone who wasn't a medic but seemed to get it surprisingly well? Share your stories.

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Don’t guess what I need – Words of a brain injury survivor

Michelle #jumbledbrain — Tue, 30 Aug 2016 13:00:28 +0000

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 that 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, (eventually) 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 reflection.

“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?

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