Just so that people know, this post is directly following on from last week’s post Mental Health: What We’re Dealing With so if you are just starting to read my blog I would advise you to go back to the last few weeks and my writings (ideally Only lessons, Simplifying ABI Recovery, The Importance Of Family, A Cruel World In The UK. I realise that it is a lot of reading but this post is part of a larger discourse so sorry for that). My main aim of the last month or so is to try and get people to understand how we, the ABI patients, in turn making it easier for people to try and understand what it is we live with in day-to-day life. So here comes part 2.
Affecting All Aspects Of Life
Last week I spoke at great lengths regarding the manner of the changes that happen when a brain has been damaged after something like an ABI or TBI. My aim last week was to try and put those changes that are so hard to put into words into a (potentially) real life, everyday situation that people could relate to. I wanted people to see and understand the confusion that occurs after ABI, the lack of familiarity, the feeling of being out of your comfort zone, and most importantly that these changes are not a gradual decline; these changes are foisted upon you in a life changing instant.
I used memory as a subject because everybody has a memory and certain times when they forget things. Memories are a key part of who we are and it is a good way to expand upon the subject of “What We’re Dealing With” because everyone knows that feeling when you suddenly forget something that you know is important, or that frustrating feeling when you know that you know something but you can’t find it amongst the stores of other memories and information, but at least people without an ABI know it’s there to be found and where to find it.
This is the real issue after an ABI; having to learn again where different information is, finding out what information remains, what abilities you have lost and whether anything that has been lost, damaged or changed can be recovered.
Where Last Week Comes In
Last week I spoke about the brain in terms of an organ and likened it to a house, rooms that have different uses and contain different equipment, tools and information. Each room has a specific purpose and which you go to when a particular need or skill has to be accessed out of necessity and I wanted to show that after an ABI or TBI that the rooms have had items moved or swapped around or even removed entirely. The example I gave last week of making a cup of tea and being unable to find the necessary items to make it because everything had been muddled up.
As I said, I used memory as my example because the feeling is a universal one. All of us at some point have had our memory fail us but with the notion that we have all of other cognitive functions to help us retrieve the memory from a well organized fully functioning brain. But what happens when the rest of the functions AREN’T there to compensate? What if the lapse is not a momentary one, but one you have to fight against for the rest of your life? And it’s affecting many different/all areas of your brain?
Deep Rooted Confusion & Anger
The reason that I chose to use an example that everyone (ABI or no ABI) could relate to was to try and give an people an understanding of the next piece of the puzzle, something that not many people will have gone through. That is a complete questioning of who you are post-injury. The effects of the injury go from things such as what makes us who we are on a social level, the stuff that is closer to the surface such as interests, habits, likes and dislikes and so on. However it also goes far deeper, into both physical psychological issues such as emotional impairments, changes in sexual behaviors, cognitive processes, issues with speech vision and of course, physical disabilities.
Now if you can, imagine my memory example from last week and the type of confusion that would cause and think of dealing with that, alongside the issues (which are just a few ways an ABI can manifest itself) I named in the previous paragraph. All of those functions that we relied on, overnight, no longer work at the speed we want them to, in the way we want them to and in a way that we are familiar with. The point I am trying to make (and I may be making it in a rather blunt and heavy handed fashion so I apologise if that is the case) is that all of these changes are happening simultaneously and we have to find ways to deal with and cope with each individual problem while the others are there just below the surface waiting to trip us up as we go.
All of these changes happening at once lead to a deep-rooted confusion as to who are now compared to who we used to be before our injury. This is the other issue that can be often overlooked; we have a basis for comparison. We can look at ourselves before the brain injury and compare who we are now to that previous version of ourselves – the fully functioning person that did not have to deal with or think about any of these problems. For me this caused a huge amount of resentment and anger towards both the person who had inflicted my injury upon me, towards the world and its injustices in general and worst of all resentment towards myself. I resented who I was, what I had become, the unfairness that my livelihood had been taken away and at the time, the early stages of recovery, I thought this was who I was, who I would be for the rest of my days. Alongside these feelings of anger and confusion there are a whole plethora of other emotions and states of mind that came with them: loneliness, fear, nervousness, anxiety (there are many more) all about who I was now compared to who I used to be and how I had changed. When I was around people I used to ask myself: “I know I’ve changed and that I’m different, so they must know it too. What if they hate me? What if they think I’m stupid? What if they don’t love me or don’t want me anymore?”
Looking To The Future
After an ABI very rarely is there a cause for hope straight away. I personally found it extremely difficult to look beyond the moment I was in, the day I was living and experiencing. Basically what we’re dealing with after an a brain injury is a monumental, internal change both mental and physical. In the early stages as you come to terms with the types of changes I have talked about, you realise that the life you led previously is gone and you spend a lot of your days just existing, making it through the day while wallowing in and mourning your losses. However, I need to emphasise that there is a cause for hope. These last two posts have not been the most positive or uplifting ones, I am aware of that. That was not their purpose. The purpose of the last two posts has been to try and help people understand the turmoil and chaos going on inside the brains of ABI patients in the hope that I can, over the next weeks/month post useful information that can help overcome the disorder and internal conflict that can so often boil over over and spill out into the real world. I want to try and help anyone who is reading my blog to try and see that there is a future out there for you and I’m going to try and help you reach for that future and it’s successes and options so you can grab it with both hands.