Having a brain injury turned me a bit anxious and paranoid about what others thought of me, “you shouldn’t care what others think!” others would say. But that’s just one of those empty things that people say but don’t actually mean isn’t it, a piece of hollow advice. A bit like if you’re single and looking for a partner then someone gives the golden line: “you know what, it’ll happen when you’re least expecting it! The moment you stop looking it, it’ll happen!” Yeah I’ll just stop wanting something that I want because it’s easy to control the mind didn’t you know, cheers for the crap tip! Meanwhile they go back to their spouse because they have no idea what it’s like to be in your shoes. Or maybe you’ve met a person who has had a brain injury and they have ‘got over it with their positive personality and determination!’ The truth is every single brain injury is truly unique and affects people in different ways, just because one person can deal with their brain injury it doesn’t mean that they could deal with yours! Anyway you do care what people think though don’t you, not all people but certainly people that you respect. Otherwise you wouldn’t mind if the local newspaper printed a story on their front page about you that wasn’t true and the whole town believed it, besides its only what people think!
I was always really positive in the early days after acquiring my brain injury. Somewhere I had heard and read that negative attitudes can be damaging to your progress and your health, I was surer than sure that my brain injury was only temporary and before long I was going to make a full recovery despite what doctors say. Here I am, over eight years later unable to work, handle staying up past 11 o’clock without my trusty mug of Horlicks to help me sleep and constantly tired I’m starting to think that they may have had a point you know!
I was always sure that I was going to be right as rain in a year or so, I did my best to stay fit and visit the gym regularly. People would say how well I was doing and I liked it, I would lie and say that I was better than I was. Well it wasn’t so much a lie as an exaggeration of the truth, I would tell people that I had been running the previous morning I just wouldn’t tell them how I needed to go to bed for 3 hours after and spent the rest of the day exhausted and unable to think clearly. I didn’t tell people how I couldn’t sleep at night and made up for it by having several naps in the day. I spent 90% of my time concerned about how I would look for the show I would put on for 10% of the time that anyone saw me.
“Yeah I’m great! Any day soon I’ll be back at work” people would see me as I wanted them to see me, a survivor not how I was the majority of the time, struggling to stay awake. But it was alright because any day now I would be fine! Put it off, put it off and put it off, that’s exactly what I did when I had a big project to do for college or uni, I’ve always been a ‘mañana man’. But time passed and my fatigue just wasn’t going away so this left me with a dilemma, do I start letting people see me when I was feeling fatigued and in a bad light? No way! I was genuinely unable to work. My fab support worker Laura would tell you how I used to retreat for a ten minute power nap every hour! I could look well and wanted to keep up with trying to be healthy as far as I could see good health was my best chance of making that full recovery!
It is very easy to blame things on your brain injury, it’s easy to make the assumption that because you have a neurological condition that you are unique. Of course that is true in many ways but you are also human and are very much prone to human failings. I’ll give you an example that happened to me recently:
I found that I was becoming fatigued very quickly over the last month I would get out of breath quicker than usual. I have a damaged hormone gland in my brain and don’t produce enough of a particular hormone so I have to inject it every night like a diabetic does. I thought my low energy must be due to a hormone deficiency so I was going to enquire at the hospital.
I recently did the Manchester run with my friend Nat and was posting some of the photos on Facebook. That’s when I saw how big I was and I don’t mean lean muscular mass! We were running in pink tee-shirts to raise money in the name of my fantastic mate Andy who we tragically lost in February and I looked like Mr Blobby! I was weighing in at 13 stone. How long had I been feeling tired? A month. Anything happen a month ago? Erm I got a car! Doesn’t take Sherlock Holmes to figure that one out now does it?!
That said though the human brain is the most complicated thing in the universe so it makes sense that brain injury is far from being fully understood by even the best neuro scientists on Earth. That makes it even more frustrating when you get those people with no qualifications who think they can solve your problems because they have had it and you are just lazy. I bet everyone with a brain injury that is reading this has at some point encountered one of these! The people who say things like “Oh I know exactly what you mean my memories terrible!” or “Of course you can come on holiday, just get your own room then you can go have a rest” problem solved! Its not that simple as we know but you can’t go into explaining why with a long winded explanation, how dull does that make you sound!
I don’t have any answers to these things by the way they are just things that have irritated me over the years and I’m willing to bet that others have experienced similar. I guess its because I have always done the best that I can to not stand out that nobody has treated me any different. All of a sudden when I get invited along to something I don’t feel I can do I want people to recognise my condition!
That’s a great thing about brain injury people often look the part, even if you cant walk the walk you might be able to talk the talk! If I get invited somewhere that I couldn’t manage then I don’t moan but try to see it as a positive! for these situations I rely on my close friends I have had the moan to or family members that understand and I have had ‘the moan’ to!
It may be another day sat in alone but also great that people care enough to think about me I just think of the alternative !