I am the Brain Injured Bear Fighter. I have a brain injury. Just over 3 years ago, I came off my bicycle at 45 mph and landed on my head. Turns out that’s not a very clever thing to do.
This is how I normally introduce myself at the group sessions that I attend at the Community Head Injury Service. Well, apart from the first bit – that would be a bit weird.
You get to meet all sorts of people there who have injured their brain in different ways – from falling off a ladder or being involved in a road traffic accident, through strokes and encephalitis to cardiac arrest (resulting in a lack of oxygen to the brain whilst temporarily dead) and AVM (arteriovenous malformation – the blood vessels in the brain are tangled and eventually rupture, causing bleeding in the brain).
The one thing that all of the people I have met have in common is that their brain no longer works in the way that it used to – and never will. Their life has been changed suddenly and irrevocably, through no fault of their own. It’s a bit like being picked up and dropped in an entirely new dimension, where everything looks the same but nothing works in the way that it used to. As you can imagine, that can take some getting used to.
The symptoms of brain injury can be many and varied – from difficulty with speech and language, through problems with balance and controlling limbs to more subtle cognitive challenges like recognising different emotional responses in others. I saw a quote from Headway (the brain injury charity) when I visited hospital recently which sums it up very well – “if you’ve seen one brain injury … you’ve seen one brain injury”. Turns out the brain is a pretty complex thing that controls almost everything you do – who’d have thought?
In my case, my major challenges relate to 3 things:
- Planning and organising
- Processing information
- Decision making
Unfortunately, these skills are required for pretty much every aspect of daily life, which tends to make things somewhat tricky. My brain becomes overloaded very quickly when I try to do things – you know, the big complex things that require a lot of brain power, like cooking, housework, walking the dog, reading and responding to emails, talking to people. The best way I have found to describe this feeling is like the cognitive equivalent of gasping for breath – my brain just can’t keep up, no matter how hard I try. Indeed, the more I try, the worse it gets. This means that I have to limit the time that I spend doing things, taking frequent breaks to give my brain a chance to rest and relying on others for help in getting things done.
For me, my brain injury is kind of like trying to use a phone that you’ve dropped on the floor – some of the functionality that it used to have works for a short time, but then it needs recharging. If you try to use it again before it is fully recharged, then even some of the limited functionality that it still had after being damaged no longer works and the charge runs down even more quickly. In the end, you learn to only use it when you really need to.
It took me 2 years and a lot of help from my psychologist and occupational therapist to work this all out and another year to fully accept it and implement some more effective strategies to help me cope with everyday life. Over this time, I have gradually transformed into my alter ego – the Brain Injured Bear Fighter. Kind of like a rubbish version of one of the Avengers, whose key strengths are resting, watching Bargain Hunt, recognising the car number plates of friends and writing monologues about having a brain injury. To learn more about my transformation, please read the other monologues that I have posted to this blog.
My go-to strategy for coping with life is exercise, in particular cycling (somewhat ironically). It seems to have a restorative effect on my brain function, almost like a recharge, albeit only for a short period of time (around 20-30 minutes) – I assume because it is largely spontaneous / instinctive and so does not involve the 3 things that my brain finds most challenging. I often use this to my advantage by exercising before attempting the most important / cognitively challenging tasks in my day (e.g. riding my bike to and from the Community Head Injury Service in order to attend an appointment).
At this stage in my “recovery” – if I’d been sold this outcome, I’d definitely be asking for my money back – I feel the need to take back a bit of control over my life. I know now that I am never going to get back to where I once was, but I can at least try to make something of what I do still have. Putting aside the car number plate thing for a second, there are only 2 things that I can do moderately well that don’t overload my brain: writing about having a brain injury and riding a bike. Well, when I say moderately well, I have nerve damage to my right side which means that I am limited to around 60 minutes of riding before my right leg gives up – any excuse to stop for coffee and cake! So that will be just the 1 thing then.
In order to exploit this much sought-after skill, I have resolved to share my experiences with as many people as possible to raise awareness about brain injury and help those who find themselves in a similar situation – whether that be the person who has sustained the brain injury or their immediate family, who have to live with the longer term consequences. As part of this, a specific aim is to get Headway to adopt the strapline “Remember, a brain injury is for life, not just for Christmas” in their marketing materials. That last bit is not entirely serious.
In doing this, I also hope to set an example to my own children about how to deal with life. In the end, it’s not about being the best at everything, but about understanding what really matters to you and finding a way to get it done. It’s not about how much you do or even how well you do it, but what you do and the attitude that you do it with.
As a good friend of mine said to me a while back when I was particularly struggling to come to terms with things, “it’s not about what you can’t do, it’s what you can”. At the time, let’s just say that I struggled to see his point, but now I realise how right he was. If only I’d I done so earlier!