Advice on how to process and progress following an acquired brain injury is hard to come by. What should you expect? What will change and what won't? What pace can you expect to move at? Carina Barnett writes from experiences in the first of a three-part series from Mental Health Today.
Whatever the cause of a brain injury, its effects are devastating.
Having lived with the aftermath of one since 2001 I have decided to write something I wish I could have read all those years ago. We could all have been more prepared for what to expect.
I can only speak about my own BI, which was acquired (caused by bacterial infection) as opposed to traumatic (caused by a blow to the head or similar). I know that I was extraordinarily lucky in my medical care and have managed to maintain my independence and recover as well as I could realistically have hoped, given my circumstances.
Good luck in your brain injury recovery journey. Not all BIs are the same, but there are certain features which are common to many of them.
An ABC seemed an appropriate format. Since the BI has robbed me of much of my memory, I have had to re-learn many things and the alphabet is one of the basics we start with as children. I now divide my life into two parts – I almost feel as if I was re-born when I woke up on a hospital ward almost 20 years ago and everything had changed.
A is for Anger
Anger is part of the normal grieving process and you are grieving, quite legitimately, the loss of your former life and the future you could otherwise have had. The brain injury has wrought changes and you will be angry. It’s completely understandable so don’t beat yourself up about it.
Children have tantrums when they don’t get what they want or things don’t work as they ought to. If you are like me, you will forget things like passwords and how to do tasks which were probably very easy before. This will be infuriating and frustrating (I threw things a lot!) but try not to let it get to you.
Remember, it’s not only you who will be angry. Your family and friends may resent you for ‘taking away’ the person they used to know and changing the relationship, even though they know, rationally, that it’s not your fault. Allow them to be angry too.
B is for Brave
You will now need to be extremely brave.
Most of us will never have experienced anything like this before and probably thought that we would fall apart if we ever got a diagnosis of a life-changing illness or suffered a head injury after a car crash or a fall. You may surprise yourself and be braver than you think.
Baby steps – go easy. Go at your own pace but believe in yourself and know that you will emerge from this. Learning anything new is scary and yes, you will need courage and inner strength. Children wobble and fall when the stabilisers are taken off their bike for the first time but then, a short while later they are haring round at top speed – fearless. You will wobble. A lot. Just keep getting back on and keep trying.
C is for Cry
I’m afraid you need to get ready to do this a lot. It is normal and, pretty much, essential. You may find you cry at things now that never affected you before. I feel as if a layer of me was shaved away after my illness leaving emotions much closer to the surface.
There are so many phases in brain injury recovery and at times it can feel endless. You may wonder why this happened and, once you accept that you will probably never be exactly the same again, you yearn to just be happy and content once more. Let yourself cry. You are grieving, remember? You may feel helpless, lonely, abandoned, frightened.
It will take a while before you think you are capable of it but you will laugh again. You will probably find humour in unexpected places. When you do, embrace it. Let it out. Crying and laughter are simply signs that you can feel.
D is for Disability
After my brain injury I needed to fill in endless forms - and the question which I always hesitated over was ‘do you consider yourself to have a disability?’. Not, did I have one but did I consider myself to have one?
Initially I ticked, no, (of course not) but then, as time went on, I realised that things had shifted, if only subtly, and the fact that I now had a different personality, was far more sensitive to noise and stress and had also lost a huge swathe of memory meant that, albeit invisibly to the naked eye, I was changed and yes, I did consider that this disabled me to a certain extent. It’s a grey area but I believe that if you feel yourself to be disabled and that the injury has affected your life for a period of time and caused changes, invariably negative ones, then yes, tick the box.
E Endless Exhausting Endeavour
These three words just fit together so I will use them all.
It will take months or, more commonly, years to ‘get over’ a BI. Some people seem to bounce back faster than others and there will be those who get back to work and seem to resume life more or less as before within a relatively short time. No BIs are the same so never compare your recovery to that of anyone else. Just focus on your own healing and get through it at your own pace.
It does get better but it will be tiring and others may not appreciate the effort you need to put in for even simple tasks. Fatigue is extremely common after brain injury – mental fatigue more than physical, as you need to concentrate far more. This is utterly exhausting and cannot be overstated. You may feel as if you are at the base camp looking up at a towering mountain, with your friends laughing and waving at the top. Take one step forward. Then stop. Grit your teeth. Now take the next step.
Parts two and three in this ABC guide will follow in the coming weeks...