A piece I wrote 15 years ago, updated...
A message from Baron Curfew, brain injury survivor, holed up in a mansion somewhere in Lincolnshire.
Anybody who is unlucky enough to suffer any kind of brain trauma strives for just one thing. It matters not whether they be married, single, straight, gay, black or white. It isn’t too much to ask for when you think about it…
There you go, I’ve said it now. There’s no turning back, I’m off on one. A rant, if you will. Where’s the soapbox.…
It is one single element that seems such a simple requirement in the grand scheme of things. You’d never had any trouble in the past, so why should it be any different now? Not an easy question to answer. The stark reality is that as time passes, acceptance becomes so much more difficult to find. Occasionally it seems, it can even be impossible.
Why? Who knows? Not I. What does it even mean? Another good question, I’m full of them. Well, full of something, I’ve been told many times.
After a brain injury it can take weeks, months, or years to accept the consequences. Many people will never quite manage the feat. Acceptance is a baton they are simply unable to grasp. It can be a long, long fight and there are most certainly many hurdles to overcome. A hard fought battle you never trained for; you had no idea the war was even coming. You have been thrust feet first into the situation without warning. There wasn’t even time to put your shoes and socks on. Some of the obstacles blocking the path are more ‘mountain’ than hurdle. You’ll need your own mental mountaineering gear to conquer them. And including obviously, crampons, for no other reason than I like the word.
If the summit should ever be reached, what a view you will suddenly see through fresh eyes. The sunlight is blinding in its beauty. You wake in the morning with a whole new outlook on life. The birds are singing their morning chorus. Life is suddenly worth living, and not just for the feathered ones. Tweet tweet.
But, and it’s a huge but…
Through it all and very much in the forefront of your mind is the overriding feeling that you are unwell. Hey, a damaged brain does that to you. Sickness and a frighteningly high level of fatigue are now as normal to you as good health had been prior to the ‘event’. It gets a bit much at times and sometimes only humour drags you out of the mire. Crampons
In an awful lot of brain injuries, this dominant feeling of strain, of illness, is a powerful one. It is more than a part of life, it is life. Every morning can be the ultimate effort. Tiredness is all prevailing and the memory of just simply feeling well is a pleasant one, if you can even remember.
All the while the world keeps turning, the tides rise and fall and Ant and Dec still defy logic and remain popular. And you keep on keeping on, hiding the truth. The outsider, the stranger in the street doesn’t see your reality. There’s no reason why they would. They see the shroud, the front, the veil that rarely lifts.
The search, continues, seemingly endlessly. It can be achieved however, the quest is rarely fruitless. Once acceptance has finally entered the thoughts and feelings of whoever may have survived a brain injury, it is only then that they can begin to start smiling again. A smoker will never quit the demon weed until they really want to. A drinker will never purge the alcohol from their system until they themselves desire it. And likewise, those with brain injuries will never find acceptance unless they truly wish to find it. Through the tiredness, the pain, through whatever anguish that may have been suffered since the accident, they just keep on smiling and why? Because they are alive, they possibly shouldn’t be and they damn well aren’t going to apologise for it! The side issues no longer seem quite so important any more. The fatigue, the memory woes, etc, etc. They can be lived with, but they won’t get in the way any longer. Well, not totally. The hurdles still lie on the footpath of life, though now, you can leap over them, in a fashion.
There is however just one spanner to throw into this well oiled works. What could this problem be? Surely there couldn’t be anything more difficult to cope with than your own health could there? Your own life thrown into chaos and turmoil? Oh yes… Other people looking in.
It’s so simple isn’t it? It really couldn’t be easier. Your family and friends will understand because they are close to you, they surely can’t fail to understand why you find it so difficult to function. All they have to do is listen to you and try to understand. But it doesn’t always work like that. Much like everything in life, the minority can spoil it for the rest.
You can never be the same person after a brain injury; it’s virtually impossible. No matter how remarkable the recovery, there will always be both visible and invisible scars. However, after the acceptance the onlooker just sees the front, that cheerful veil that says,
‘I’m still here, and I’m going to enjoy every minute, but you may never know how dreadful I really feel.’
All you want now, the only thing you want is acceptance from the people around you. If you’ve found it yourself, then is it really too much to ask? In a lot of circumstances it seems it is just that. People assume that veil is the real you.
‘He/she looks Ok, I’ve seen them out by themselves, there’s nothing wrong with them; they look and sound perfectly alright to me. They should be out working 9-5 now.’
If only it were that simple. A normal life, whatever that may be is the long term goal, it has to be. But then again, doesn’t that apply to all of us? Well, yes. Though it’s always going to be that much more tricky to achieve when quite a large proportion of Joseph Public look on with disbelieving eyes.
Not only brain damaged, but actors, liars and hoodwinkers too. And that’s just in the eyes of the government.
It seems there’s a long way to go before acceptance and even understanding will be the norm for many people out there striving to live a happy brain injured life.
Good luck all.