After I suffered my ABI in August 2009, a long spell of healing began. It was a journey that my family and I would be taking together on a road that can feel incredibly lonely a lot of the time. I have mentioned before on my own blog and on my past posts for Headway Worcestershire that everyone has their own time frame, their own ways of handling certain types of situations and their own approach to brain injury recovery in general. I think that all three of those categories are affected (predominantly) by three equally important factors (these will be the three things I will focus on as I believe that they are the biggest issues in being able to appropriately share your story, feelings, emotions, fears, regrets etc.), as I call them, The Big 3: firstly, overall severity of the brain injury, then location. Believe it or not where you are living can have a surprisingly large impact on how you integrate with other people and how we share our story and our experience of brain injury, particularly in the face to face manner of engaging with people on a social level. Finally the personality we develop post brain injury as our recovery progresses and how we see things through a different lens post-brain injury.
However, when we take all of those variables into consideration, there is always one advantage we have. That advantage is a fairly straightforward one (if not a little abstract) and that is the times we live in.
We are currently living in an age where technology continues to advance and we have relatively cheap and easy access to that technology. Technology such as smart phones, the Internet and specifically social media, allows us to share our story with whomever we please. We are blessed with the technology to allow us to find and engage with the right people who are going through a similar situation to ourselves with the tap of keys and the click of a mouse. In the end there is always a way to get your story out there, have it heard by the right people and develop positive relationships out of a horrible situation.
The Big 3 – No. 1 – Severity of Injury
The trouble with the after effects of brain injury is that the plethora of different brain functions has such a broad scale in terms of severity of damage and range of abilities, that it can be difficult to find people whom you might be able to relate to. I was very fortunate in the fact that I have retained most of the key physical and cognitive functions. Where I have issues is in socializing as well as in mental and emotional health.
I remember, even when I was still in hospital when I would meet up with other patients who had suffered a brain injury (a daily event where we would make ourselves some toast, a cup of tea and talk to each other for an hour) the people there covered such a broad scale in terms of severity of injury and thankfully I was at the top end of that scale. I felt frightened when it that room. I was never sure why but I remember the fear, the fear of the other patients.
I don’t know what caused it. Maybe it was when you surveyed the people in the room you saw potentially who you could’ve been if the damage had been only a little worse. Or maybe it was that fear of the so-called “other me”, a subconscious prejudice that existed and a desire to distance myself from it. Whatever the reason for it, the fear was there. I remember trying to overcome the fear to get involved with the other people in the ward but the fear was too great. I was too afraid. I was too afraid to socialise with the people on the ward and after my discharge, I was soon to find that I was unable to, or found it too hard to fit in with everyone else.
So due to my own fears or subconscious prejudices, the effects of my ABI when engaging with the “normal” majority of society, combined with my stubborn and naïve resolution that this injury was the same as any other and I would be back to normal in no time, I was already on the road to isolation.
I was well on the road to an exile that would leave me with nobody to talk to, to share how I felt with and nobody who could empathise or relate to how I was feeling.
The Big 3 – No. 2 – Location
One of the bonuses of today is that we live in a society where many charities and organisations are trying their best to build bridges and knock down walls so that Britain can be a more inclusive place for people who struggle with matters such as disability, addiction, rehabilitation and many other similar issues that affect lives so drastically. Finding the right people to share your experiences with is about looking in the right places. Try looking at the following charities; due to the outstanding efforts of many organisations such as Headway UK, The UK Acquired Brain Injury Forum (UKABIF), The Child Brain Injury Trust (CBITUK) and Mind Charity (who support issues regarding mental health), and of course, your local Headway branches, people who are suffering from the after effects of a brain injury are able to talk to and engage with people who have gone through similar experiences as themselves, socialise and start to form new relationships. Whilst enabling the formation of relationship between brain injury patients, they are also working to help provide information for people (close family members, friends, relatives and carers) affected by the many different issues that manifest themselves within people post-ABI or TBI.
However, the real issue that must be addressed in Great Britain today is the accessibility of places where people affected by brain injury, in whatever way, can go for help. It is wonderful that these types of facilities and opportunities run by charities and organisations (with a proportion of people making these opportunities happen employed in a voluntary capacity) are available to us. However they cannot hope to cover the necessary ground nor do they have the funding or staffing to make them available to everyone that needs them. I was astounded when I found out that the NHS does not have a program specifically dedicated to brain injury rehabilitation, especially when you consider how great the number of illnesses/accidents (strokes, road traffic accidents, brain haemorrhages, violent crime) that often have serious repercussions and long lasting effects on the brain is.
This was the experience I had when I left hospital. I was not even assigned to a rehabilitation team for my brain injury. I think that due to a lack of funding, staff or facilities combined with living in a place that, due to its low violent crime rate, was unprepared for a circumstance such as mine. I have also found out over the last few months that the Dorset section of Headway UK is closing (or may have already closed). I believe that there needs to be some serious modifications to the way the NHS deals with brain injury rehabilitation. There needs to be a large emphasis not just on physical and cognitive rehab but on social rehabilitation too. I believe that had I been living in an area with better services, better facilities and professionals better prepared to deal with a case such as mine then many of the difficulties my family and I have had, would have been avoided and subsequently decreased the amount of obstacles we have had to overcome and been provided more help than we have been in Dorset.
The Big 3 – No.3 – Personality Post ABI/TBI
Now we all know that, after something as traumatic and life changing as an ABI or TBI, we undergo certain changes in our personality. Some are inexplicable; changes in interests, the loss (or in some cases) gain of certain abilities or talents, changes in motivation and goals. However these are things that can also happen without the interference of a brain injury. What I am talking about is the personality we develop while seeing the world through the eyes of someone with a brain injury. This altered perspective of people and the world at large, mostly how people and the world view, relate and react to them also contributes to the process of patients accepting their disability and who they are now, a person living with a disability.
After my own brain injury I went through a period of what can only be called denial. I tried to be the Tom I was before my injury. I think, somewhere deep down, I knew that this was a futile enterprise. In my heart more than my head, I knew I was different, that people saw me differently and that things would be different from now on. However my perfectly healthy (or so I told myself) brain overruled that feeling in my heart. “I can still be Tom”, I told myself. When I look at that sentence again, I realise I must have been aware in both heart AND head that things would be different, or else I wouldn’t have tried so hard to cling on to the world I wanted desperately to be a part of. I wanted badly to be part of a social life that wouldn’t accept me due to the basic fact that socialisation among people twenty and thirty is mostly made up of sitting in a pub or nightclub, drinking alcohol and doing other things beyond my capability. It took a long time of trying to fit in with people who had no real concept of the issues I was struggling with; the lack of identity, the vulnerability, the physical demands on my body and mind to just get out of bed, go through my day before getting back to bed and to sleep again. Those people don’t, didn’t (and probably/hopefully) never will know what that feeling is like.
Regarding finding a place for you to fit in with people who accept you and with whom you can share your story and feelings with people who empathise and try to understand and relate to you, it is a case of experimenting and finding out for yourself unfortunately. This is not a case of taking my words as gospel and shutting yourself away; nor is it advice you can just pick up and use. These kind of feelings and the security they provide are not often found at a bar or club. Friendships, I mean REAL friendships, take a long time to develop. It would be my advice though that people who are vulnerable should be careful how much they expose to and to whom they expose it. Because unfortunately there are some people who only want that information for their own ends and nothing more.
I suppose the conclusion to this section would be that to find the right people to share your experiences, feelings, emotions etc. with is that you need to look in the right places.
Coping With Brain Injury In The 21st Century
So far, I have talked about what has stopped me from socializing and sharing my story with people, in essence, THE DISABLING FACTORS. Now I will talk to you about what has ENABLED ME to share my story.
I have always had a passion for literature, writing, poetry; simply put an interest in words and language. I had thought about The Big 3 Disabling Factors above for quite a long time and resented them for holding me back and how I could not be the only person who has felt this way about brain injury and the long process that is rehabilitation and recovery. It was at this point that I started writing my blog where I intended to share my story, my experiences and my opinions on brain injury, why we do the things we do, the importance of particular issues and ways I could help people achieve their own goals or give someone else a chance to relate to me. Over the last (nearly) seven years, I have always wanted someone to lean on; it was only when I flipped that situation on its head, thought about it the other way that I realized I could gain just as much by being a leaning post. I hoped that people would be able to relate to my experiences and see that I had been through the same or similar issues that they had. I needed the people out there to understand and see that they were not going through this horrible situation alone. The prospect of doing it on a worldwide scale as well excited me: the fact that I could post my ABI story on the Internet where anyone who wanted to see it could do so from the comfort of their own home without any hassle or inconvenience.
Since I have started my blogging activity, both my personal blog and my work for Headway, I have thoroughly enjoyed the idea of contributing to the bigger picture and tackling the issues of ABI and TBI if only in a small way. Having said that, I have been contacted by people and communicated with people online from all over the world who tell me they feel reassured by my writing, that it makes them happy that they now know that a certain issue is not one exclusive to them.
I have spoken to people in The USA, Canada, The Netherlands and Scandinavia. It is incredible just how far my story has managed to go in under a year. To hear people give you some reassurance, because when people respond saying a topic you have written about is something that person has related to, they are doing exactly the same thing you have done for them. It seems to me that as I continue my blogging and other online activities that I am learning more, feeling happier and more proud of myself as a disabled person. In the 21st century, we are finding ways to build relationships and share stories with people we would never otherwise have met and expand the ABI community ethos as well as strengthen the position of the disabled population on a global scale.
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