Views from an Injured Brain
I write predominantly about issues I’ve experienced. Although my situation is very unique, I have come to realise that the resulting issues I’ve faced are shared by many. I would very much like to hear if others have experienced similar ones.
It’s scientifically argued that You are defined by the composition of your brain. It’s therefore justified to feel that when you’ve had a brain injury resulting in parts of your brain not functioning properly, or at all, that the injury is to who you are. Basically, a brain injury makes You feel lesser.
A little clarification after a brain injury would go a long way in limiting this destructive thought process. What defines who You are is your mind, which is a product of the early structure of your brain. Once formed though, it isn’t fixed. As we use a very small percentage of our brains, our minds can utilise spare brain, developing new ways of operating.
One of the biggest problems that I have encountered is that the NHS as a whole does not encourage hope. I understand the need to accommodate for likely outcomes, but this is overdone, at the expense of striving for more. If hope is one of humanity’s defining features, is the NHS inadvertently dehumanising brain injured patients? The nature of hope is to aim for a dream, something that may not be possible. I think the problem lies in the fact that we are asking the NHS to promote dreams, which have no basis in science and medical knowledge.
For instance, in the early days of my recovery, I was discharged from NHS neuro-physiotherapy. I was copied into a letter to my GP from my current physiotherapist saying, “Nick’s goal of walking unaided again is unrealistic.” It would have been very easy to think well, I’ve done as much as I can do now, I might as well stop trying. Luckily by this point I’d already had an overdose of hope. I then went on to achieve things that shouldn’t have been possible!
If recovery is unrealistic, it’s only because it hasn’t been done yet. A single human brain is by far the most complex thing we’ve encountered in the universe; we do not fully understand it’s capabilities. Although it may be likely that a poor outcome will materialise following a brain injury, we need to give the brain chance to perform unimaginable wonders. Unless you know everything about every brain, I don’t think you have the right to say you definitely won’t be surprised by what transpires!
Although there may well be something in place to target depression and low self-esteem in rehabilitation processes, I didn’t see it. I think this is because it involves you admitting that there is indeed a problem. The thing is, I wouldn’t even admit this to myself! I saw it as a weakness, and I was trying my level best to be strong and overcome allegedly insurmountable odds.
It seems all focus for me has been on my physical problems, and emotional problems have been almost ignored. It is critical to have a good outlook on things to be able to fully utilise any physical progress you’re helped to make.
I have heard the term “range of motion” used regularly by physiotherapists. This is to test that limbs can reach the proper alignment to complete basic tasks. Similarly, I think that somebody should be checking “range of Emotion”, to make sure your emotions can reach proper alignment to produce sufficient levels of hope and self-esteem.
A good example of hidden emotional issues is: where I’ve spent years learning to walk, last year I got so close. I’d managed to get to a situation I’d only dreamed of. I could independently ride for miles with a super lightweight walking frame strapped to the back of my trike. This meant I could get off and walk into a public place. I thought just being physically able to do this was enough. I was wrong. I wasn’t emotionally strong enough to overcome my low self-esteem and resulting self-confidence issues.
After watching an episode of The Brain with David Eagleman, I think I may have heightened self-consciousness through my frontal lobe damage. With all the medical expertise available, why has this never been addressed? This, combined with my self-esteem issues, has stopped me making use of the amazing physical progress I’ve achieved. I have also been too scared to interact with society, too afraid of how people will judge me, as I talk about in my recent blog post Stranded In Civilisation.
There are so many helpful people out there, but you don’t know where to look. Since having dealings with charitable organisations in my role as Lead Ambassador at the Royal Buckinghamshire Hospital, I have seen some people making a real effort to centralise these. Something I also hope to help with. The only problem here is that: having never been brain injured before, I have no idea what could benefit me, so don’t know what I should be looking for! Even when people have taken the time to point me in the right direction, putting things in my lap, my low self-esteem and resulting fears have stopped me pursuing this help.
One of the things that has had a very detrimental effect on my self-esteem is not being able to fit in anywhere, not being able to join in. Even at seminars attended solely by brain injury sufferers, I am normally the only person in a wheelchair. I guess this is because no two brain injuries are the same. This is probably why I found that when at one of the U.K.’s leading NHS neuro-rehabilitation centres, I felt their therapy wasn’t really relevant to me. It all seemed to be standardised for how my brain should react to my type of injury, not what had actually happened!
It only adds to my feeling of worthlessness when looking at all the things I cannot do. People around me are living normal lives, doing things which I always expected to do. Until a few years ago, I was a productive member of society. It’s such a sharp contrast as now I feel like a drain. How can I look after a child, when I can’t even look after myself? How can I drive, when I can’t see properly? How can I work, not being able to write, talk clearly, having glitches in cognitive function and memory, poor coordination, not to mention volatile emotions?
It is only natural for these thoughts to cross your mind in a situation like this. Where these soul-crushing thoughts are allowed to linger, they fester and magnify exponentially. These thoughts have often led to a “what’s the point” moment, and I’ve considered many different ways of limiting my suffering. I got to a point in my recovery where my “amazing physical progress” had tailed off, and it was clear that the problems that remained were likely to be permanent.
It’s only fairly recently that positivity has come to my aid. I have been privileged to have “randomly” encountered some very positive people. This has helped me stop looking at what I can’t do, and look at what I can do. For instance, when I look at the problems with me working again, I now see the opportunity to help people on a large-scale. How awesome is that?
Because I have a severe deficiency, I have striven for some semblance of normality. I’ve noticed that people make allowances for disabled people, which is a nice gesture. But maybe it’s been taken a bit too far? Disabled people are not measured within the same parameters as a fellow able-bodied human being. This makes you feel belittled. That’s why I’ve taken up photography. When I upload a photo to Flickr, I’m not labelling it as “a photo from a disabled person”. Any compliments or criticisms I get are completely genuine and are measured on a “level playing field”. I get a taste of normality.
Life is about enjoying a journey that we all take. When you have a brain injury, you are forced to sit on a “bench” on the sidelines while you recover. Except rather than getting up off the bench when you are able to continue your journey, it feels like you are encouraged to stay “sat” as it is safer. I wholeheartedly believe a quote from T.S Eliot applies here:
“Only those who will risk going too far can possibly find out how far one can go.”
We need to continue moving forward with our lives, aiming towards that seemingly unattainable goal, to “reach for the stars”. This is where hope needs to be instilled, to clarify that there is a chance of reaching your destination. But as life is about enjoying the journey, we need to be allowing people to continue theirs, which they won’t undertake if there is no hope of getting where they want to be. Just because we have problems, it is NOT OK TO FAIL.