If I have time to fester, it often seems greatly unfair that my life was so drastically altered by an arbitrary moment that was totally out of my control. The unfairness of the brain injury I suffered is further emphasized by the fact that I had done things the way that everybody advised me to: I had gone to college to get my A-Levels, applied for university and been accepted onto my chosen course, all the while holding down two part-time jobs. I was a stand-up member of society, going through the system, doing everything I was told.
On the night I suffered my ABI, my ability to do those things the same way as everyone else was essentially stripped from me. Consequences of that attack are still with me today; I am permanently deaf in my left ear with a constant state of Tinnitus (ringing in my ears to you and me). My sense of taste and smell were affected badly and I spent three years wearing an eye patch to help with permanent double vision, until it was surgically repaired. There are headaches, issues with balance that still persist today. It is not these things I want to talk about though. I want to talk about the things that stay mostly hidden and invisible. These are the things that most drastically affect my life post-ABI, things that seem most likely to persist in the long-term. I will share with you how I have had to adapt my daily routine to live a somewhat “normal” life around these after effects and while they may be severe consequences. It is possible to work around them with the right approach and mindset.
The Invisible Effects
Every human suffers from fatigue; it is inevitable given the stress and grind of everyday life. For victims of a brain injury however, this will be increased dramatically. Our brains have to work much harder to compensate for the damages that have been inflicted within them. After an ABI, the brain is constantly trying to find new pathways to traverse the injured areas as well as attempting to repair the damage that was done. It also works hard to put right some the physical harm you have suffered, it tries to function in its normal way when that might not be possible.
For example, I was told that the double vision I was suffering from, made my fatigue levels worse. My brain was trying to put my eyes back in line and eliminate the double vision, which wasn’t possible without surgery. It was essentially like my brain banging its head against a wall and expending energy with no results. After the surgery to correct my eyes, my fatigue levels improved dramatically as everything was working normally again and my brain could save and expend energy in other areas.
Throughout the recovery stage, particularly in the immediate period after an ABI, managing consistent and reliable sleep patterns, along with rest periods throughout the day will be vital. Ensuring the brain has down time where it is not thinking, where it is not working will be key in enabling the brain to rest and continue to heal itself. This is something that has not changed six years on. I am currently in a routine of waking up at nine-thirty and going to bed at eleven with an hour and a half naptime set-aside just after lunch to keep me balanced and energized throughout the day. I can only say that the management of fatigue levels is something that will continue long after the injury, possibly permanently, as it has done for me.
Socialization & Engagement
Another aspect that became difficult was sustained periods of socialization, which also contributed to my fatigue. Engaging with people for longer than ten minutes had the potential to finish me off. Conversations were difficult as people (other than those around you such as family members who knew and understood the situation) had a tendency to talk at a speed I couldn’t keep up with. Now, we as ABI patients do not want any special treatment, unfortunately though, the fact is that we need it sometimes. When I had just come out of hospital, holding conversation was so difficult because of the slow speed at which brain was processing what was being said to me. It was as if I was being talked at as opposed to talk to.When someone would talk to me, my brain would take such a long time to process what was being said at the start of the dialogue, by the time it had caught up, the person speaking had already started and completed another sentence. I would drift in and out of conversations. It was the constantly having to keep up and be aware of what was happening around me that caused huge issues for a long time.
This is a problem I still face today. For example, both my brother and sister have children, in all I have one niece and two nephews. Engaging with children is something where you have to be constantly aware. The brain works so hard to keep up, to talk with the children, to play with them, to ensure they are behaving themselves, to ensure they are safe! It’s insane! It’s like someone is stretching my brain! I’m also then expected to be able to have conversations with the adults in the room! When days like this come along it seems almost unreasonable for me to be expected to keep up with everything. By the end of a period of time spent socializing with my whole family, kids and all, I am ready to crash.
For those caring for ABI victims out there, it is key to monitor the level of social stimulus the patient is receiving and look at how they react. It is then that you can perhaps organize activities with an appropriate level of social stimulus for the patient to engage in. In my case, it was clear that the more I engaged with people in small doses, starting small and slowly increasing those periods, that my ability to handle social situations was getting better over a long period of time (we’re talking roughly two to three years).
From the moment I returned home, actually scratch that… From the moment I woke up in hospital and wasn’t able to remember people I am related to, it was clear that memory would be an issue for me. In fact, I think it is safe to say that memory loss is an issue for most ABI patients. Again, damage to the brain often means that it has difficulty in both committing short-term memories into long-term memories as well as recalling long-term memory that has already been stored. I have often heard the analogy that memory, after an ABI, is like somebody has emptied the contents of a filing cabinet onto the floor; it is all still there just in no discernible order. I tend to disagree with this analogy as it implies that all there is to do is to put the memories away again in the correct order (at least, that’s how I see it, but I’m a half glass empty type of guy). The unfortunate fact is that it will most likely always be an issue.
My issues with memory are still with me, struggling to convert short-term memory into long-term memory has cost me jobs and affected relationships. Employers think I am lazy or a poor worker because I have been told the same thing a dozen times. Girlfriends think I don’t care because I can’t remember things they told me yesterday, apparently a typical male trait.
Again memory is something that tends to improve over time. I would not like to say definitively how much it would improve (that will depend on the severity of the injury to each individual) but it can improve. Completing cognitive exercises always helped for me (puzzles, reading, problem solving). As well as that, my parents allowing me some room to exercise my brain almost like a muscle. To try and structure my own day and maintain my own routine (which at times failed massively) but in my opinion had a large effect on planting the seeds of memory for things I had to do each day (i.e. taking medication, bathing, feeding myself and so on) which I am now much better at remembering.
The evolution of technology has also helped. As we continue to progress in the era of smart phones, PDA’s and so on, we can now download apps for pretty much everything. An app to structure and plan our day, a shopping list app, calendars are pretty much a given with any phone we buy now. To have a better chance of success in the battle against an ABI you have to be open to embracing different ways of doing things. Technology, specifically my smart phone, plays a massive part in structuring my day and enabling me to remember appointments, things I have to do throughout the day.
Change & Adapt
ABI recovery is a period of constant change. As people living with the after effects, something could happen four years after the injury, when you thought everything was going fine, that forces you to take a step back. Everybody involved in the life of an ABI victim; patient, family or carer have to be constantly willing to change and adapt to overcome issues that can pop up at any time. The ones I have focused on today are the ones I believe that are fairly universal and still affect me the most today. It is a constant learning curve but with an open mind and a positive approach, these issues can be overcome.
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 come 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