The consequences of an Acquired Brain Injury can be far-reaching and devastating. When I say far reaching and devastating, what I really mean is that the consequences that people like you and me (those that have suffered from an injury) suffer from, ripple outwards like when a stone is dropped into a pond; impacting hugely on the lives of those closest to us.
All of the potential negative outcomes that come as part and parcel of a brain injury for the patient – the difference in personality, the difference in likes, dislikes and interests, the differing levels of social engagement or unreliable emotional responses – are part of this ripple effect as the people around us come to terms with these changes and adjust their actions and behaviour accordingly. One of the biggest challenges that need to be overcome, is helping a brain injury patient deal with the loss of certain every day life skills that we do tend to rely on. The loss of these skills is a huge contributor to why each day is such a struggle.
As Fully Abled People, What Did We Take For Granted?
It is only now that I have suffered something as life changing as an ABI and I can see life and the gifts we are given from both vantage points. I realise how much I took for granted when I was fully abled and in the prime of life. I am speaking from personal experience, when I say that we (people) tend to overlook the things we have, and underestimate the difficulties of living life without the ability to do certain things. I know that I used to take many things for granted. The majority of us learn to read at an early age, by our early teens most of us are able to cook a basic meal, we learn to walk and talk at a young age, the vast majority of us are born with all five senses working well. We become used to these skills and senses that makes life so much easier.
Today I will talk about my own experience of how a single moment of catastrophe ripped some of these things away and forced me to find ways to compensate for deficiencies that I still suffer from today and about skills that I had to relearn and compensate for.
Damage To My Senses & Memory
This is where the majority of the damage to my brain was done. As a result of my ABI, I lost my sense of smell and taste; I am permanently deaf in my left ear with a permanent case of tinnitus (a high pitch ringing) in that same ear. I also suffered severely from a condition called diplopia in my left eye. The reason that eyes have both the ability to focus and have depth perception, as well as providing our brains with one clear, single image is because the two eyes working as individual organs have a point where the line of sight from each eye synchronise, creating a point of focus. Diplopia is where the eyes are knocked out of sync and the point of focus is lost, meaning the patient is left with permanent double vision.
One way that I managed to counter the issues with diplopia was to close one eye. This, while being exhausting (trust me, try walking around with one eye closed for the entire day), did eliminate the double vision. This did mean though that it eliminated my ability to perceive depth and to focus on objects properly from any distance. This meant I had to be accompanied by an adult on any journey that I was to make due to potential dangers regarding road safety.
Another reason I required the accompany of an adult on any outdoor excursions was because I was also left with severe issues regarding memory. Committing short-term memory to long-term memory is still a large issue for me. People speak to me about certain incidents that have occurred over the years, unless they are particularly significant and worth committing to memory (a judgement that is obviously made subconsciously) then I will not remember them.
These two issues combined had the worst effect on my ability to read.
Reading – What Was The Issue & How Did I tackle It?
As well as the issues with new way the issues with my sight affected me, I have mentioned it in previous posts, is upon my ability to read. When it came to reading for practical purposes in everyday life, it was not so much my ability to actually recognize words but more my ability to attribute meanings to certain words when, for instance reading signs or reading a menu in a café. I definitely had issues with the dual thought process required with reading a word, recognizing that word and using your mind to attribute meaning. That was the trouble I had with using reading as a tool.
What really upset me though was the fact that I could no longer read for pleasure. I have always loved novels; I am a huge fan of the Harry Potter series, His Dark Materials trilogy and the Bill Bryson books to name just a few. The issue I had with reading was the ability to read the word and to also use my mind at the same to imagine the scenario that was being depicted in word form.
My ability to read was an ongoing problem as time went by. The issues caused by my fault vision the potential to stop me achieving my goal of attending university but we (my family and I) didn’t know how to improve that particular issue, which was the key issue that could be tackled and now, reading also caused extra fatigue on top of it all.
So, as an alternative to me closing my eye all day, every day, we went online and found a website that sold eye patches. I brought a few different patches with different patterns and designs to make it a little more livable with. With the introduction of the eye patch came a slight improvement in the fatigue. With that extra energy also came a slight improvement in the reading.
One thing I would like to mention is about the benefits I gained from reading comic books and how the illustrated form of written works can be hugely beneficial for ABI patients. That particular medium negates the necessity for the dual thought process that reading prose requires. I am not an expert, so I cannot say for definite, but I believe that it being a visual medium along combined with reading, reading comics allowed me to read the words and the pictures help to reinstate and reapply meaning to those word in a more concrete way.
Understand, Assess & Act
To try and recover our the every day skills that have been lost as a result of our brain injuries, we first have to understand exactly what it is that has caused the issue, assess what we might be able to do to improve the situation, then we act. Decisions on methods of regaining certain life skills that have been lost should be undertaken with much consideration and executed very delicately. The effect it can have on confidence could be devastating if done rashly and without care. The more we try to understand about our injuries the more chance we have of succeeding and helping the ourselves.
We must remember that there are certain aspects we may not be able to do anything about. For example, my memory has improved since I suffered my injury but I would still consider it my biggest handicap. The only thing we can do when it comes to this aspect of the recovery stage is to learn everything we can about what the problem is and to never underestimate the affect it can have. Finally though, while we must never underestimate the enemy we face, never underestimate what, with time, patience and positive reinforcement, those affected by an ABI can achieve. There is strength in all of us that I think is often underestimated.
About the author
My life was changed for ever on the 30th of August 2009 when an attack on a night out left me with sever brain injuries. I was left in an induced coma after suffering fractures to the skull, bleeds on the brain, as well as severe bruising to the frontal lobes. Since the injury I have found it hard to find and keep work, to maintain relationships, and generally stay positive. I have decided to share all of my journey with you, in the hope we can bring brain injury awareness to the level it should be at. Please, follow my own WordPress blog Life After Brain Injury to keep up to date with my brain injury journey! Follow me on Twitter: @ABIBlogger
Tom Massey, ABI Blogger