Clients' stories

Jane's story

Everyday living with an Acquired Brain Injury - The Hidden Disability

There was a survey in my local paper this month which showed that more people are afraid of developing dementia than of being diagnosed with cancer.

The brain is the most misunderstood and mysterious part of the human body and, for many of us, the prospect of any part of it failing is a terrifying one. Some worry that, as they get older, they will get increasingly confused, forgetting important things and inhabiting a hazy world where memories blur at the edges. This does not only happen with age, of course. It happened to me when I was 39.

Acquired Brain Injury (ABI) affects far more people than you probably realise and if you watch mainstream TV regularly, you will know of at least two high profile people who have been affected by it. There are many others out there, children and adults alike, who are getting on with their lives and maybe have no obvious outward sign of disability but this doesn’t mean they don’t need help and understanding.

Like thousands of other people, I do the school and supermarket runs. I do them on foot now as I needed to be re-assessed after the ABI (which I got after TB Meningitis) to check that I was safe on the roads and now, as I am not as employable as I may once have been, a car is an unaffordable luxury. Walking is healthier, but no fun in the pouring rain and it limits how much you can carry! Every morning I drop my daughter at school and then take a deep breath before negotiating the playground, avoiding the screaming, zigzagging children and the sudden shrill noises which are so familiar in daily life. Probably most people barely notice them but they can be very traumatic for anyone with an ABI. Respite comes as I walk through the fields to the supermarket but, once there, my senses are assailed anew with the onslaught of erratic trolleys, sudden loud announcements and a general hustle and noise. I now need to do things at my own pace and have to be given time and silence so that I can think because my brain has been battered by disease and is still doing its best to fix itself. Being rushed is an ordeal which leaves me angry and anxious so I try to avoid any situation which may bring that on.

This is the insidious and draining daily reality of ABI for those of us who live with it. It is ongoing and, in many cases, has become an utterly integral part of who we are, even if, to casual observers, there is no sign that anything is wrong.

Maybe that woman did not smile adoringly at your child today as it zoomed towards her, screeching and playing aeroplanes. She may, of course, simply not like children. Not everyone does. Then again, she may have a head injury which means that noise is intolerable. As for the teenager who takes ages at the till, counting out his change over and over again as he mutters to himself – yes, I suppose he may be intoxicated or deliberately trying to annoy you. Then again, can you bring yourself to entertain the possibility that maybe, just maybe, the supermarket run is hellish for him since his ABI, but there is nobody else to do it for him and, although it is no more than a momentary irritation for you, it will leave him mentally and physically exhausted afterwards.

It may seem trivial to some but head injury is a pain to those of us who live with it. Some people may have been involved in an accident or suffered a fall. Others will have been left with an ABI after disease or infection and for all of us, leaving hospital will mean just the beginning of a long struggle. It’s hard enough coming to terms with our new personalities and the limitations we now face. Add to that the additional pressures of being made to feel guilty if we need to claim benefits or ask for help. We may look perfectly fine but we have what is the equivalent of missing files or a failed network connection in the complex mass of message wires which comprise our brain and we have no back up disk. This leaves us with little or no short or long term memory, an inability to concentrate or focus, an utter aversion to noise, a short temper, extreme fatigue, bad eyesight or an ever-present anxiety. We may all suffer all these things and more to a greater or lesser degree and most of them affect our ability to do many jobs.

We can’t just ‘snap out of it’ and switch off from our head injury. Everything requires marathon effort, things which seem so easy to everyone else are unbelievably hard for us and, just because you see us doing ‘normal’ things and just because our ABI happened 5, 10, even 20 years ago, does not mean it has gone away and everything is back to normal. We now have a different ‘normal’ to those with no ABI and need acceptance, patience and understanding, not the incomprehension and intolerance that so many of us face.

We are every bit as disabled as those who need a guide dog or who have a missing limb, but because the part of us that is damaged is inside our brain, ABI has become known as the invisible disability. There are charities out there fighting to help individuals and families who have been affected and also campaigning for more understanding, spreading the message that an ABI is very real and can be extremely damaging.

I have to write everything down and check my notebook constantly. That is always assuming I can remember to check it and am not distracted by something else. My thoughts now are fleeting and flirtatious and vanish in an instant, never to be regained. It is frustrating, frightening, infuriating, boring and utterly exhausting and to be faced with a snigger by those who find it amusing does not help one bit. I can fully understand why people give up if no follow up help is offered. It should not just be offered – we should automatically qualify for the appropriate therapies and someone, somewhere, should make sure that we attend for treatment , as, left to do it alone, we could so easily forget dates, find it hard to get to sessions or feel that we are not being taken seriously. Many are falling through the net and not getting the help they need. We should not leave them to flounder alone and some money needs to be found to block the holes in that net.

It is not minor and it is depriving many people who have done nothing worse than staying alive, of the chance to enjoy and live those precious lives to the full. In the best case scenario the brain will heal itself in time, but there is that key word. Time. It is not something we are all lucky enough to get enough of. Many of us find ourselves pressurised to work or resume the tasks that we used to carry out, by those who fail to realise that these are now way beyond our capabilities. We are made to feel guilty and not everyone is lucky enough to have a loving and empathetic support network.

Let us go back to my opening sentence. I have an ABI. I have also had cancer and I know which of these conditions has been more frightening. I remember sitting opposite my oncologist as he told me that I was, to all intents and purposes, cured. I never expect to hear that beautiful word uttered about my ABI. Still, having survived a dangerous disease with all my limbs and most faculties, other than my memory, intact, I count myself extraordinarily fortunate. There are many others who are far worse off than me. There have been some casualties; my marriage, independence, precious memories, friendships and a capacity to just be tranquil and happy. A simple joie de vivre. These things have all gone and no longer apply to me. I divide my life now into two parts, the pre and post-ABI phases. As I remember nothing much of the first 39 years, I have had to get to know and befriend the new person inside this body as she and I are stuck with one another, whether we like it or not.

Just because you can’t see something does not mean it is not there or that it is not real. Those who believe in God would certainly argue the case for that. Just because people with ABI are left with effects which seem minor and are, in some cases, barely perceptible, it does not make those effects any less disabling and I just hope that one day, everyone with an ABI can feel understood and accepted and that they can find some measure of happiness and equanimity. It would certainly help if everyone lucky enough never to have been touched by ABI themselves could learn to accept our disability as a valid one. We don’t expect a cure, but would it be too much to ask for a bit of care? The time, dignity and assistance we need to get our heads round our condition and live to the fullest potential possible. We may no longer be able to achieve what we once dreamed of, before ABI, but we all still have lives. However different they may now be to the ones we lived before, these lives belong to us and surely we deserve the chance to enjoy them every bit as much as everyone else.

Jane is a pseudonym for the writer who wishes to remain anonymous.

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