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What is it like living with a brain injury? 

What is it like living with a brain injury? 

To be honest it has been so long now that I would like to know what it is like to live without a brain injury, I imagine its nice!

Joking aside, the truth is that for me it has been challenging, hugely frustrating, at times scary and occasionally embarrassing. Its having a poor memory, knowing that you have a poor memory and being constantly paranoid that you’ve forgotten something, in 5 minutes you will have forgotten all of that and the cycle starts again.

Its doing your best and putting all your effort into looking like a ‘normal person’ that doesn’t have a brain injury, hoping that people believe you. But don’t ask you to do anything normal like concentrate for more than ten minutes. You try so hard to pretend you don’t have a brain injury, then occasionally you push yourself too hard the fatigue hits hard, really hard, so then you have to explain when you are absolutely exhausted why you need to go for a rest in the day. Its then having to face those people again and you are paranoid about what they now think of you. I’m always paranoid about what people think of me. I’ve been told many times not to worry about what others think of me, but I am, of course I am! Not necessarily everyone but I certainly want the people I respect to respect me.

I can’t speak for all, but I can tell you about my experience.

At the start, I wasn’t really able to think too deeply about anything due to the trauma and I guess shock, and my lack of ability to concentrate for any amount of time. I didn’t even know where I was. I don’t mean that as a figure of speech I mean literally, for the first couple of months I thought I was in Scarborough Hospital. I think that is because Scarborough is where I grew up, that’s the only hospital I had always known, and I even knew which room I (thought) I was in.

At first it wasn’t hard because I wasn’t aware or didn’t understand what had happened, I just lived day by day and I thought that I was fine and everyone was fussing for no reason. In fact, my main concern was that I had booked a holiday with my mates in a month that I was excited about. As long as I was ok for that was my only true concern in life, little did I know! I had so many problems at the time that I just didn’t know about. And besides, too many people were visiting me and bringing chocolates for me to care!

My life had changed so much in an instant, yet I had no idea at first because there was no sudden moment of realisation because you don’t come out of a coma with all your wits about you. To understand what I know now took time and required my brain to heal a lot. This is hard to explain to anyone that hasn’t experienced it but I find it easier to think about it in terms of something we are all familiar with, mobile phones. As technology advances the changes are relatively small so you don’t notice it too much, but you would if you go back in technology ten years. That is what happens with a brain injury. You go back to having a brain like an old LCD screen phone from the early 2000s, it can’t handle the amount of information that the modern phones can, it just does the basics - calls and text.

On a far (far, far, far) simpler level, your brain is a bit like that when you wake up from a coma. As you become aware of your surroundings you improve fast. At first, you advance through iPhone (or whatever phone you use) 1, 2, 3 etc., then you get access to Google. You then start researching your condition and the more knowledge you acquire the more miserable you become. This is actually seen as a good thing, but it comes with a cost and with knowledge comes depression, which sounds like the catchphrase of the worst Marvel superhero you’ve ever heard of!

I was told that I would be confused but I always thought that I was ok. I was quite confident that everyone else was fussing too much and had made a mistake. When in hospital, I genuinely thought one of the nursing staff was a witch and still, in no way did I think that I was confused. I was clearly in denial, but I guess my brain was working on a much simpler level. It is hard to relate to how I was back then. I didn’t notice that I had double vision or that a chunk of my visual field was missing to the left and below. My concentration was terrible and my proprioception (sense of how and where my limbs were without looking at them) wasn’t anywhere near as good as it was before. Extreme heat or cold on my head made me massively fatigued. I wasn’t that stressed though…. that came later!

Basically, the more you heal, the more you understand but unfortunately what you grow to understand isn’t good news! It was during the years that followed, that I slowly realised a lot of things. I learned things one by one from experience though and couldn’t be told, I can’t be told anything!

For example, despite being told previously I wouldn’t really like noise, I never avoided it as I didn’t even consider this to be true until I found myself in a noisy environment like a busy restaurant. I didn’t realise that I had a major issue with my short-term memory until I went to the toilet and forgot where I was sat (now that’s embarrassing but I was only with family!)! Later, I went on a date to the cinema, the same thing happened (at least the lights are on in a restaurant!).

I basically went through a period of time where I was realising what things that I couldn’t do any more or as well as I used to be able to pre-injury which chipped away at my confidence. Those times were awful, and I don’t know if I was officially clinically depressed at this point but it’s the lowest I had ever felt in my life, as I realised that this would never get better, there just seemed to be no way out, what was the point in me and my life?

I could only stay alert for a short time. What job could I do that was of any merit? I felt that I was just a burden on society. The thought had crossed my mind but I feel I should point out that I never felt seriously suicidal, if you’re feeling that way then seriously you should definitely seek professional help.

Listen to our Podcast, Brain Injury Bites: Depression after a brain injury

Living with a brain injury is hard

Living with a brain injury is hard, you just don’t fit in anymore and most of the struggles we go through are invisible or they go unnoticed and when I have tried to confide in people I have been belittled. The memory thing is the most belittled, it was so stressful when I first realised I had a memory problem, the first time when I was trying to remember what I did the day before was pretty traumatic. You try and explain this to someone and the best you can come up with is ‘my memory is bad’, to which you hear ‘oh that happens to me too’, but it’s not the same, its different! When trying to remember something, in my mind it’s like absolute blackness. Have you ever been caving or for a tour down a mine shaft and the guide turns off the light? Like that!

I spend too much of my life concerned about what others think of me and meeting anyone new is pretty stressful. I want to come across as a decent interesting person, I had this massive incident and almost died, afterwards I had a lot of special attention and everyone was so careful around me. That was just embarrassing though, no young man wants to be treated like a child and all I have ever wanted was to just fit in with society.

I discovered along the way that, that is so much harder than it sounds especially when somebody asks you a question that you haven’t prepared for in advance. For example on Monday morning you are asked “what you did at the weekend?”… and you have no idea! In terms of meeting new people, I find I have this incredible story that grabs the attention of people but whilst that may impress people that I have just met, it only serves to push you further away from them. In fact, once conversation on this has run out I find further conversation difficult, partly due to memory difficulties but I often have little in common with anyone my age. I may be 41 but I don’t feel like an adult, I certainly look the part and I do still get a little bit disappointed when the shop assistant authorises my purchase of an age restricted product (ok I mean beer!) by clicking the ‘looks easily over 25’ button on the self-checkout in Sainsburys!

I have had a TBI since I was a student which means I have never grown up into an adult in the regular way, I had never had a proper job, had kids, paid a mortgage - so finding common ground is a challenge. I get tired and I get very paranoid as I am aware of some of my flaws, but I am scared that there may be other things that I don’t know about yet! I know that I forget things, I repeat myself, I must focus on concentration. I know I can start to slur my words a little when fatigue kicks in and these things are all in my head when I’m trying to make friends and act ‘normal’. I am wary of people finding out, not that it is anything to be ashamed of, but it changes things and I want to explain why I need to take a rest in the day in my own time.

In summary then, living with a brain injury is not easy nor is it a lot of fun but ultimately how you react to it is up to you. Things these days are still hard, but they are so much better than they once were. It obviously takes effort, but you really don’t have to spend your time in misery.

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