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 second of a three-part series from Mental Health Today.
Brain Injury - a beginner’s guide
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.
F is for Forgetting
Amnesia. The gift that keeps on giving.
Heavy sarcasm, obviously, because, although amnesia is a popular plot device in many films, there is nothing remotely amusing about amnesia. Trust me. I have forgotten a huge part of my life and events which, for many people, are treasured memories: the births of my children, university days, jobs, holidays. Memory is a very complex thing and what you remember varies depending - in large part - on which areas of your brain were affected. I raged for a long time at the fact that I had lost all these memories but that is, ultimately, unproductive and unhelpful. Other people can remind me about things. Photos help and music (more on this later) is a phenomenal restorer of memory.
If the part of your brain which stores memories was affected, you may have to accept that they are just gone. Your hard drive has effectively been wiped - with no back up disk. Start afresh by writing some new files and making some new memories. Try not to be angry at forgetting things. Write notes if it helps. Amnesia, in varying degrees, is very common after brain injury. You will learn strategies to help you but never, ever think that it is less disabling than a physical disability. Your memory makes you you. Obviously, without it, you aren’t the same you. It’s scary and does your head in but try and make friends with the new you.
G is for Grief/Guilt
Yes, grief again but add a dash of guilt for good measure.
Allow yourself to grieve. Something has ended, possibly for forever. The life you planned, the hopes you had – everything has come to a screeching halt. The person you were may now be gone, replaced by someone slightly different. You might have to endure prolonged treatment but it is often hard to know how well you will recover and how far you will be able to pick up life as it was before. ABI is a huge life event with an uncertain outcome.
At some point, you may feel - or be made to feel - guilty. Please don’t. You have possibly spent a long time in hospital, rehab, or needing help from family or friends. Your employers say that they have been stuck without you and your colleagues possibly resent your absence as it meant extra work being shifted on to them. You are not a burden. Don’t feel guilty. You did nothing wrong. You now need to do what you need to do in order to get better. They will all be fine. Don’t worry about anyone else for now. Just do whatever helps you to live this new life the best way you can.
H is for Hyperacusis
Not a word I had ever heard before my BI.
Quite simply, it means an increased sensitivity to noise.
You may find that sudden, repetitive, and loud noises affect you much more dramatically than they used to. I have felt deep outrage at some hideous noise, only to realise that nobody else around me seems to even notice it. They blithely carry on laughing and chatting whilst, for you, there is nothing else you can focus on but the persistently coughing man at the next table or the endless tapping of that child’s foot. Some noise may make you feel anxious to just get out of the environment. Fight or flight. If you can avoid noisy situations, like playgrounds full of shrieking kids - then do. I could not always stay away from them when my girls were small and going to shopping centres or getting on a bus could wear me out and make me feel panicky. Years later, I went to watch loud live gigs again – music I loved. These were the artists who had helped me heal. I went to one huge stadium gig and another which required me to fly alone to Paris and back in one night and I was completely fine... so don’t despair, your gig-going days may not be over. Not all noise will upset you. Just be aware that you may not react to noise quite as you did before. I am never without my music but silence is good too – you will need a few moments every day just to let your brain catch up.
I is for Invisible
Sometimes, you will feel utterly invisible. At first, the flurry of medical attention around you is intense and there will be constant tests, with sympathetic family and friends rallying round. However, after months, years, this can tail off or stop completely. You will be deemed to be "cured" and left to get on with your life. Others have moved on but you probably still feel stuck and, to some extent, invisible. You are not. Reach out and try to find a network of people or interests to keep you in touch with life. It is tempting to close yourself off after an ABI and think that nobody understands how you feel so it is easier to be alone. Try not to do this for too long.
An ABI is seen as an invisible disability. You may sit next to them on the bus or work in an office with them. People who live with an ABI each and every day. Just because someone shows up for work and their children always get to school happy and on time, don’t assume life is easy for them. They may have to fight hard to live through each normal day and their struggles are invisible to everyone else. You can choose to let others know about your ABI or keep it to yourself. It is nothing to be ashamed of. Don’t let yourself struggle – there may be more help available than you think.
J is for Joy
There is still joy to be found after a brain injury.
Things you loved before may not be as important now. You will still find joy, maybe in the smallest of things.
Music, food, nature – these can all be hugely pleasurable things. Take time to get out into nature if you can. By the sea if you live near enough or just out in the air. It will do your body and brain so much good. Avoid shops – you will only be assailed by noise. Enjoy the small moments of joy – the three minutes of a special song, the taste of that morning coffee. It’s a new day. Do what you can with it. Reach for joy.
You deserve it.
K is for Kind
Be kind to yourself. Don’t push your body or blame your brain when it lets you down. Listen when it tells you it needs a rest. If the room is too loud and you feel stressed, try and get out of the room. Be gentle on yourself.
Be kind to others too. You have had the privilege of seeing just how fragile and delicate we all are. Others might be living with a brain injury too, be caring for or know someone who is. Don’t let yourself wallow in self pity for too long – never assume others have it easy. They may not.
Just be kind.
L is for Loss
Loss is inevitable after brain injury. It will mean the grieving, which I have spoken about, although loss can lead to a new start, if you let it. You may have lost memories, friendships, and relationships. Jobs and sometimes limbs, sight, or hearing after a brain injury. Losses can be huge or small but all significant. Accept loss. Try to look at what you have gained. It may take a long time before you can feel even remotely positive about your experience but please try.
M is for Music
A life saver for me.
Hearing is the sense which seems to stay when others are gone. When I was in a coma I was spoken to and played music. I found that my musical tastes had utterly changed when I got out of hospital and I no longer wanted to listen to the CDs in my collection. In my mind, I was two decades behind everyone else (I had retrograde amnesia) and I had been influenced by the voice of my nurse in the first, terrifying days of waking up in hospital. Nothing is wrong or weird in brain injury – if music of a certain type helps you or moves you – enjoy it. You may be teased (I was) for your sudden change in musical taste. But a lot has changed so …
Music nurtured me daily through my recovery and I could never be without it. The style of music has altered subtly as I moved through the grieving process but I have been to many live gigs in the past few years and these have been extremely loud - but very wonderful. Whatever music touches you, let it run through your head and soothe your brain. It is phenomenal therapy.
- See more: The healing power of music in affective and neurological disorders
- See more: Where do people draw the line in supporting others with their mental health?
N is for Normal
There is no "normal" with a brain injury. Everyone – that means everyone - heals in a different way and at a different pace. However you behave now is normal. Maybe you were shy and now you feel gregarious and outrageous – fine. Maybe the opposite. That’s okay. Changes after a brain injury are practically inevitable and perfectly normal. Remember that and don’t let anyone tell you any different.
O is for Ocean
If you are lucky enough to be near water – especially the sea, then take yourself off there as often as you can. I live on the South Coast and walk by the sea every day. It has been an incredibly therapeutic place at each stage of my recovery. The sea expects nothing of you. Let yourself just listen to the gulls, watch them battle against those buffeting winds in autumn or glide on the air currents on a warm day. Watch the waves, they will just carry on rolling in and pulling out, regardless of what happens in our tiny lives. The ocean helps put things into perspective.
Part three in this ABC guide will follow in the coming weeks...