Where Am I Now?

Hi folks! I am back again after a week or so off due to epilepsy related complications. It would appear that I am becoming resistant to my current medication (Epilim Chrono or Sodium Valproate). I actually had six seizures in the one night last week and would not come out of them so I spent a little time in hospital and have taken some time off as my body becomes accustomed to the new drugs I have been prescribed. So I can only apologise and hope you will understand my absence last week. But now, onwards with the blog and where I left you last we met.

As I mentioned in last weeks post, the process of assessing the self is a difficult one. I have decided to share with you the ways in which I have looked at myself since I took a break over the Christmas period and the conclusions I have come to. This should hopefully give you a better idea of the type of things we need to examine about ourselves when approaching recovery as well as establishing where is it we want to get to and what are the things that are holding us back. Now, as I start with the assessment process, I ask myself what is holding me back? Lets start with the obvious…

My Brain Injury

When I suffered my ABI in August of 2009 my parents were informed that it was very unlikely I would survive. I was admitted to Southampton Hospital with a GCS (Glasgow Coma Scale) of 3 (the worst you can be) after suffering a subdural haematoma, bilateral frontal contusions, and subarachnoid blood in the basal cisterns, a midline shift and multiple skull fractures.

I am extremely lucky to be alive let alone here typing away and talking to all of you fantastic readers. I made a fairly successful recovery and have been very fortunate in terms of the effects the injury has had on me permanently. Below I go into the consequences of my ABI that I am still living with today.

  1. Deafness & Tinnitus (a constant ringing) in my left ear.
  2. Loss of sense of taste & smell.
  3. Diplopia in my left eye (a state of constant double vision due to my eyes being knocked out of alignment, a surgical correction took place but I have been told this correction is only temporary).
  4. Loss of balance (I can’t stand on one leg).
  5. Short & long-term memory issues.
  6. Slower processing of information and responsiveness.
  7. Social conduct and propriety (in terms of not filtering what I say before it comes out of my mouth).
  8. Short temper.
  9. Issues regarding personal space and proximity to people.
  10. Mental health issues – now I am not sure whether this is down to the ABI entirely. However, I am placing it on this list, as it is definitely an issue that didn’t occur until after the injury happened. The problems I am having seem to be based (mostly) around issues in my life that have come up since the ABI or are directly related to the ABI.

These are just some of the issues I am dealing with in the here and now. Some of them are physical disabilities, others are issues regarding my cognitive abilities and some don’t fit into either category (see number eleven). I know that there are more issues that I have not mentioned; I just cannot remember them all (see number six).

When I look at the list I have made and I think about each disability alone, they do not seem to be that bad, especially when I look at them in a positive note by considering what could have been. There are plenty of people who have to live with far worse things than I do after a brain injury. However, I would also say that when you put all of these things, all these afflictions together, it makes for quite a difficult lot to manage day to day. I do believe though that very few of the disabilities listed above are things that cannot be compensated for, improved upon or worked around with the right attitude and work ethic.

Home Life

As a consequence of my brain injury I am currently living at home with my parents. Now, as a twenty-six year old man, this is not ideal. We only live in a small, rented house that is not really big enough for my parents and me. We’re currently living in a small village where there is little to do so my social life is non-existent and it becomes very difficult to meet people.

Having said all of this, I have to say that I will always be grateful to my parents for allowing me houseroom. After trying to live independently saw a rise in the number of epileptic seizures I was having, it was becoming clear that I needed support and that living alone was not a viable option for me at the present moment. To move back in with my parents was a difficult decision to make but I know it was the right one for me at the time. I now know that I have the support I need should a seizure occur but they are also kind enough to ensure that I have time to focus on my writing ambitions without dealing with all of the stresses, pressures and responsibilities of living independently.

Work Life

One downside though is that the epilepsy has continued since I moved in with my parents and has had a pretty big impact on lots of aspects of my life. One thing you should probably know is that I am currently unemployed. I suffered many seizures while working for one of my old employers. She was extremely understanding about the situation and was aware of what action to take should one take place. At my most recent job however, I was made redundant just two days after suffering a seizure at work (the first one that I had there incidentally). I couldn’t tell you whether that is coincidence or not but it seems pretty suspect to me.

Social Life

My social life is something that has suffered quite badly since I suffered my ABI. Prior to the injury I was somebody who enjoyed a good night out on the beer on Friday and Saturday night followed by a take-away, before arriving home late. This is certainly an aspect of my life that is no longer possible due to the affect alcohol has on the way and the speed my brain processes information the day after. The consumption of alcohol also makes it more likely for me to have a seizure during the following days.

I know this may sound strange (although perhaps to some people reading this it doesn’t because they know exactly where I am coming from) but I live in a town where there are very few opportunities, facilities and activities. This means that going to the pub in the evening is a big part of people’s social life. There is very little that can be done from a social perspective that does not revolve around pub life and the people in them. But what if this does not suit me? Or what if I do not want to do this or am unable to do this? What are my other choices? Go somewhere else, I suppose.

Saying that, I also happen to be a fair distance from any of the major cities, Bournemouth being the closest which is a thirty mile trip one way, so many of the social opportunities that I would like to get involved in, that suit my interests are not realistic for me to pursue or get involved in. I can not do them where I live now, I can not fund the travel to go to the venues where they take place and I am very much alone in terms of having people with similar interests.

Conclusion

The subjects I have covered this week are a basic breakdown of my current situation in practical terms: how my ABI affects me, how those effects make living an independent life almost impossible for me in conventional terms. Over the coming weeks I will be exploring where it is I want to be and, if I cannot get there by conventional means, what alternative routes are there available for me to take? Then I will be moving on to specific issues I have that can not necessarily be solved but be worked around and compensated for to give me, and hopefully you, a better chance at a successful recovery.

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Re-Establishing Old Habits (For The Better)

My name is Tom; I’m 26 years old and the survivor of an Acquired Brain Injury. Everyone who has been reading my blog and who’s suffered an ABI, or even has a family member who has, will know that returning to complete normality, normality that was a life before an ABI, is impossible.

The original title of this update was going to be “Getting Back to Normal”, but on reflection I considered this to be misleading. As what I’m talking about today is not so much about having the same life you had before your injury because the consequences will undoubtedly stay with you. Instead this will be about accepting your limitations but re-establishing old habits activities and generally being able to have fun in spite of those limitations. It will be about realisations that I came to about my own injury, about my own mental state and perhaps realising many of the excuses that are built on the foundation of our brain injuries, for not being able to do certain things we had no trouble with prior to the injury, are purely psychological blocks as opposed to legitimate incapability’s.

Acknowledging & Confronting The Fear

In my opinion, a key part of overcoming the psychological blocks is a willingness to acknowledge them for what they are: fears, nothing more, nothing less. Much of what we achieve after our injuries is down to not just our willingness to acknowledge those fears but also to confront them

After you suffer from something as life changing as a brain injury, you will inevitably find that there are certain things you used to do with friends and family that you do not feel up to doing any more. There were many things in my life, particularly the social aspect of my life, that I stopped doing after my injury because of physical and mental aspects that I was struggling with. At that time, trying to force my way through road blocks I wasn’t ready to pass yet we not been a constructive solution. There is absolutely no doubt that I and, In fact we, need time to come to terms with and deal with these issues in our own ways and in our own time. However, from my own experience, I have found that something you gave up temporarily for your own good can become something you say to yourself and to others that you cannot do.

I believe this comes down to the nature of an ABI. Due to the length of time it can take for us to come to terms with the limitations that have been placed upon us, something that was previously inadvisable has now become impossible in our minds. Again, I can only write from my own experience and my own belief, I would say that this mindset comes purely from a fear of failure (a perfectly valid fear but one that can sometimes become irrational). I find, with people generally, that when something is difficult and we have been given an excuse to not do that thing (doctors orders for example), we will try to avoid doing it at all costs. All people, regardless of ability, will try to get out of doing something difficult if they possibly can.

The thing is, we (brain injury patients) are not facing normal problems of life; as well as the everyday difficulties that life throws at us, we’re also fighting with our own doubts, insecurities and very often trying to deal with rationalizing the concept of fairness that comes with the injury (or the “why me?” complex as I like to call it). I honestly don’t believe it is these things that stop us from trying to do the activities and hobbies that we enjoyed so much before our injuries.

Fear of Change & Failure

The fear of failure that I mentioned earlier can be paralyzing. We say to ourselves: “I used to be really good at that,” or “I used to really enjoy doing that, what if I can’t do it any more?” When I am being honest this question has been in my mind every time I do something, old or new, since I suffered my injury. Maybe, we have to open our mind to the fact that this will be a constant fear.

The truth of the matter is that we use the things we were told at the start of a recovery process, a process that began perhaps several years ago (as in my case), to avoid facing challenges we may fail at in the here and now. The reason for this, I believe, is because if we fail at something we were good at before we suffered the injury, we have to acknowledge a change in ourselves; a change for the worse. Nobody likes change, but I think it’s safe to say we like irreversible change, to our own abilities and social activities that is beyond our control, even less.

The longer this mentality persists, the more difficult the consequences of the injury become to face. When we cannot face failure or loss then total acceptance of the injury and our limitations is impossible, as is a full and satisfying life post-injury.

Match Day

If I may use an example from my own life, prior to my injury I was a season ticket holder for my towns local football club. I used to travel, home and away, to watch them play every weekend. After I suffered my injury, because of the issues I was having regarding personal space and proximity to people, my neurological consultants suggested that perhaps attending the games wasn’t a good idea. Upon hearing the news, I protested. I told my friends how upset I was by the decision. In reality, a wave of relief broke over me. I was so glad I no longer had to fulfill what was, at that point in time, an obligation to maintain my social status and keep up appearances. Every Saturday, enduring the noise, the invasion of personal space, the atmosphere of drunken aggression that would have made me feel so unsafe and uncomfortable after the attack.

At that time, within the months I had just been released from hospital, not going to football make total sense while I was still coming to terms with my own issues. Recently though, I realized that I have not stepped foot in the football ground for about six years. When I thought about this fact, it really shocked me. I remembered how much I used to enjoy going to football on Saturday and thought about why I’ve not been back in so long… I mean really thought about it.

When I thought properly and considered the situation, I came to the conclusion that the only thing that has been stopping me for a good while was fear. The fear that the problems that prevented me from going all those years ago, were still persisting and were going to stop me from doing something I had previously enjoyed so much. I think this thought frightened me more than anything; the idea that I was missing out on something I enjoyed so much due to my fear and my inability to face that fear. And the length of time… Had it really been six years???

So I decided, that very afternoon, to attend a home game. I had to, I had to just take the bull by the horns and confront this fear. Do you know what? I had a brilliant day. However, having come to all of these realisations in a very short space of time (in the space of a day!), I left the stadium frustrated and angry with myself. How long had my own self-doubt and a fear of failure prevented me from doing this thing I’d enjoyed so much prior to my injury? Now, I’ve made a vow to myself to try and get down to watch whenever I can afford it and whenever I have time. I owe myself that after six years of irrational fear.

No Such Thing As Failure

The point I’ve tried to make with this post is that we cannot be afraid to face our fears. I believe that the biggest fears people have are a fear of change and a fear of failure. It is important that we face those fears and we certainly need to get used to facing them. After something like a brain injury, whenever we face up to challenge, we have to acknowledge that there is a chance we still won’t be ready to overcome it. I personally believe that the best way to overcome that daunting fact is to tell yourself that total failure is impossible. You can never fail completely. When something does not work the way you had hoped, you reassess the situation, approach it from a different angle, or even come back to it at a later point. Try again.

The real fact of the matter is, after a brain injury there are so many things we can no longer do and enjoy. Don’t let your own mind, fears and insecurities stop you from at least having a go at doing different things or returning to the things you used to do pre-injury (where possible). There is a whole world of activities and things to do out there, keep trying different things and you will find something you enjoy and that you are good at, I assure you, and over time life will start to feel somewhat closer to normal. Never quite the same but still that little bit closer.

Thank you for reading my latest update, I hope it has been of some help to you and that you have enjoyed it. Please, follow me on WordPress and get more information by following me on Twitter (my Twitter handle is @ABIblogger). Thanks and be well!

My Biggest Milestone (So Far)

“The desire accomplished is sweet to the soul.”

– The Bible

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. I thought it would be appropriate to open with a quote this week. I thought it appropriate to talk about the issues of successes, achievements and milestones throughout the recovery process. I mentioned in my early blog post for Headway UK (Worcester) how important these achievements can be throughout the recovery when it comes to building confidence in patients, the way they see themselves, think about themselves, and value themselves. The quote at the top of this page is particularly relevant, especially to the victims of a brain injury. The fulfillment of desire’s and achieving what we want becomes increasingly difficult after an ABI like the one I suffered and like the ones that affected you or members of your family.

What Do We Consider A Success?

The truth is, now I have to play catch up with everyone else, every single day, successes become more plentiful as things that would’ve previously been run of the mill, everyday necessities are now achievements in and of themselves. I get a great deal of pride from fairly simple things. For example, not needing to take a nap in the afternoon but still achieving what I had planned to do that day is a big deal to me, a day where I do not feel lonely, where I don’t feel different to everyone around me. These things fulfill me because they are so rare. However I will say the following: it is not in me to give up. I do not believe that I am any less capable of achieving my ambitions or my goals. You should not believe that either. We are just as valuable as everyone else.

Things happen in life that can be a game changer. I admit it; my head injury was one of them. We have to look at the aftermath, and admit to ourselves that things are different now. But we also, after an appropriate amount of time has passed and we have accepted those differences, have to ask where are we going? What is possible? What is the bigger picture? and how do we get there? The more confidence we can build with little successes, positive reinforcement from others, celebrating our successes, as well as a good dollop of hard work and, before you know it, other people will be recognizing a change in you before you can recognize it yourself. You will find yourself slowly working towards bigger and bigger goals; whether returning to employment or education, whatever excites, stimulates and fulfills you.

My Biggest Milestone

Working towards a long-term target that engaged and stimulated me was what kept me going. I knew I wanted to go to University (with the overall aim of becoming a writer) before I suffered my ABI. This did not change after the injury. I still had my goal and I believed it was possible. My neurological consultant said that we should assess the situation in a year’s time. It was not so much the academic side that was a problem for him, it was whether I would be able to take care of myself and manage the workload at the same time. However, I had been given a date, the final day of judgment when I would find out if I was allowed to go and pursue my dreams. The year that followed was like I was possessed. Everything I did, I did with that thought at the back of my mind. The cognitive exercises, the physical ones, the stuff I did around the house to help out my mum and dad (all under their supervision of course) was with this target in mind: University and all the freedom and excitement it offered.

A year later, after months of hard work and several tests and brain scans, the Day of Judgment had arrived. I was extremely tense. I remember chain smoking in the hospital car park. As I remember, it all happened quite quickly considering the tense build up. I think my doctor was quite keen to put me out of my misery as quickly as possible. He said, as far as he was concerned, independent life and study could only be beneficial at this stage of my recovery and the potential benefits outweighed the potential risks. I couldn’t believe it! I was finally going!

My parents helped me pack everything up and prepare me for life as an independent adult. Life as a student! When they dropped me at halls of residence and helped me unpack, they told me when they were leaving that if I ever wanted to come home, all I had to do was give them a ring and they would be their.

Weeks passed. It was quite a shock in actual fact. The fantasy I had concocted in my mind was not the reality I had been expecting. I was loving every minute of the challenge, but knew I was also finding the work load hard when trying to combine it with looking after myself at halls of residence and trying to keep up with an active social life. Basically, struggling with all the things that come with independent student life. I fleetingly thought of what my parents had said to me about coming home. Honestly, that thought was only ever a small-unwanted intrusion. I had a tendency to shake it off like an irritating fly. In my mind, if I could complete university, complete my course and get a degree, there was nothing I couldn’t do.

As the academic years passed, I started to improve. By the start of my second year, my reading ability, which had proved problematic in the first year (thank god year one was only worth 10% of the overall grade!), had improved hugely. The work I had done, the struggles I had had were bearing fruit as my cognitive ability and brain stamina had got much, much better. That progress continued throughout the third year. In all three years, the grades I received for my work continued to go up as well. In the end I graduated with a BA (hons.) in Scriptwriting from Solent University at the 2:1 grade.

What My Experience Did For Me

The success of my university experience has opened so many doors for me. It has given me the confidence to try new things and a belief in myself that I can achieve just as much as anyone else. I was forced to find ways that I could work around my disability and the disadvantages I have. You won’t see it immediately, but with everything you gain from your successes in terms of confidence, will be a series of lessons and skills you will be able to apply in other similar situations.

These skills will slowly become part of an engrained way of thinking. After a certain amount of time, a series of thought and behavioral patterns will have become so established that they become automatic, the way your brain works will always be to your advantage. Trust me, this takes a while but it does work with the right amount of effort and will make the playing field a lot more even. You will realise when you get back into work or education or whatever your long-term goal may be, that when you are in close proximity with your fully abled co-workers, you are not that much different to them in terms of ability or capability.

 

Post-ABI – Returning To Work (Part 1)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. In my previous post I mentioned the potential positive effects returning to the “mainstream” could have for people who have suffered a brain injury. This post will look at how to approach returning to mainstream employment. Last time I spoke at length on the positive effects higher education had to me and what I hope was some helpful advice on choosing the right course and accessing the support you, as a disabled student, would be entitled to. This time I hope to do the same regarding a return to work.

How Will It Help?

Returning to work can seem like a daunting prospect when you have suffered an ABI like we have. You are coming to terms with a new sense of self; there are things that you cannot do any more (perhaps cognitively, physically or both), there are issues with regards to your physical and mental health (such as fatigue, anxiety and depression). Those are issues that we face everyday (to name just a few), but I believe that a return to work can help improve most of those issues. Working a steady job, supporting ourselves and increasing our independence, grows our confidence and sense of fulfillment. This in turn plays a massive part in contributing to a positive mentality where we do not feel defined by our injury or inferior to other employees.

Looking At Yourself & Being Honest

Nobody knows you better than you. That’s a fact. It is a fact I believe to be especially important post-ABI. After a certain amount of time, you will start to become more aware of what it is you may or may not be able to do anymore. You will start to see where it is you are having difficulties. Equally, it will allow you to see where you are still strong. You may not be able to see it yet if you are still coming off the back of the injury, but you do still have strengths and abilities that make you valuable. Taking notes of these strengths and weaknesses will be crucial in terms of when you are finally ready to return to work, in applying for a suitable job for you in the long-term.

Having a positive mindset and at the same time, having a firm acceptance of your disabilities and sense of who you are key when thinking of returning to work are massive contributory factors in terms of potential success. When it gets to a point of looking for jobs, it is much better to look at the job listings asking yourself “What can I do?” as opposed to looking for what you can’t do.

Again, Start Small

I realize that this has been something of a recurring theme in many of my posts but I am a firm believer in it. When returning to work it is certainly best not to jump in with both feet. Starting out small is key to this. I believe a good way to gauge your ability to work is through voluntary employment. Offer your services to a local charity shop, or work with the head injury charities available in your area (Headway UK offer local support groups for returning to employment and there are other disability employment organisations that can help you find appropriate voluntary work, follow the link to access their website –www.headway.org.uk) . The benefits of voluntary work are that it offers a flexible working schedule and environment. This flexibility will allow you to assess yourself while you are being challenged. Again, you can look at where you are perhaps stronger or weaker; try to think of strategies that help you cope with certain situation where you struggle and how to increase your involvement in situations where you are strong. If all is going well and you would like to test your strength a little more, you can ask for more hours or more shifts while at the same time, if you are finding that the work is too demanding, you will be able to reduce hours and shifts accordingly. The positives of this is that it allows you to assess your strengths and weaknesses in the working environment in a situation of less pressure and also, if you do well, get a nice reference off the back of it.

The Support Is Out There

There are many different types of support available for people who suffered a brain injury from many different sectors. There are specific rehabilitation services, such as some of the vocational rehabilitation services that offer courses to teach new skills to those adjusting to life post-ABI. Acquiring a new skill could be just the tonic you are looking for if you are, as I was and many others are, at something of a loss as to which route you should go down. There are many vocational services offered by local branches of the NHS and accessing them should be relatively simple through your specialist.

Other potential benefits that can be gained by accessing the services of the NHS are things like appointments with occupational therapists. Getting involved in those kind of services can really help you to focus in on what it is you want to do as well as bringing potential programmes that could benefit you to your attention. I believe that just because we are the victims of a brain injury we should not be stuck in a job we hate for the rest of our lives. We should be able to gain employment that we are enthusiastic about and that gives us fulfillment (P.S. In terms of accessing the kind of support I have mentioned above – occupational therapy and vocational rehabilitation – a good place to look is in the service directory under the resources tab, on the UK Acquired Brain Injury Forum, just follow the link to their website – http://ukabif.org.uk).

There are also the Disability Employment Advisors (DEA’s) at the local Jobcentre Plus who can help you to shift through the many job opportunities out there to find something suitable for you and your specific situation. The Jobcentre Plus also offers specific programmes for disabled people who are trying to go back to work as well as information on potential welfare eligibility. Many of the Jobcentre’s effectiveness and their ability to help you will be dependent on the amount of funding they receive. I would urge you to go into it with an open mind and explore all the options that they have available (PS. Follow the link to a useful Jobcentre Plus guide – http://www.jobcentreguide.org).

In Conclusion…

It is only now I have completed this post that I have realized there is so much more I can say on this subject. So I have decided to elaborate on this subject on Monday as I think there is a lot to be said regarding the ABI in the working environment, so this one has ended up being something of a two-parter. Thanks everyone for reading and I hope it was of benefit. To find out more about my blog follow me here on WordPress @ABIBlogger or follow me on Twitter @ABIblogger (yes the lower case ‘b’ is intentional). Thanks again and be well.

Socialisation & Engagement (Part 3) – Some Hard Truths

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The key points that I wanted to illustrate in the last two posts have been to highlight the aspects of your life that are affected by an ABI: the physical and cognitive limitations as well as constantly having to be aware of your general health and well being (more so than most other people) means that in many ways you are limited in what you can do in terms of building a social life post ABI. I also hope that I made my opinions clear that much of these limitations can be really emphasised by a lack of understanding from the general populace regarding head injuries. A healthy social life is something that I found to be key to my recovery, but once again it is something that can be difficult to establish and it may require thinking outside the box in terms of what may be out there that is doable for an ABI patient.

A Limitation of Freedoms

You need to find a way to be able to enjoy yourself and some people can get this gratification from the aspects of health and well being such as exercise and diet and so forth. Many people also get a lot of fulfillment from their occupations, however there does come a point where you need to address the fact that because of some of the limitations the ABI has left you with, you may not be able to go back to work for a while or do the same kind of work that you did before. Finding and keeping work has been a big struggle for me which I have found incredibly frustrating as someone who was brought up in a family where having a job has been not just important it has been a necessity since I was sixteen. So I am going to talk about my experiences of how my life has changed in terms of some of the things I can no longer do have difficulty doing that I perhaps took for granted pre-ABI.

Struggles With Work

Let us start with a for instance. As I have said in past posts, a lot of socialization stems from people’s employment. People going for a drink after work; or there is a work 5 a-side football team, there are even romances that begin at work. Not to mention, depending on the type of work you do, socializing can be a large part of it. Take me for example – pre-ABI, I was a waiter. My entire job description revolved around socializing with people; making them feel welcome, engaging with them and making them feel comfortable. Pre-ABI, I had five years of experience in the service industry and I was good at my job. Having spoken to doctors, I have been told that the service industry is probably the worst industry I could work in, in terms of what my brain would be able to tolerate.

My neurologist said to me that the unpredictability, the chaos and the constantly having to be aware of my surroundings, that is required in the service industry would be too much for me. That the stressful nature of the industry did not work well with an injury like an ABI. To give an example of a similar problem, it would be similar to a man with a bad back getting a job as a removal man. However, post ABI, I was foolish enough to attempt to re-enter that industry.

My return to the service industry resulted in a spike in my epileptic seizures: seizures on the way to work, seizures while I was at work, and these are Tonic-Clonic seizures (the kind you see in movies where the character collapses without warning and starts frothing at the mouth) so a pretty frightening experience for people around me. Fortunately, my first boss was fairly understanding towards me and seemed to think I was a good employee and kept me on… until the café closed. So I relocated to another place, a bistro pub this time. After three months, I had a seizure while I was at work. A day later, I returned to tell them I would be in for my scheduled shift on the Monday. When I arrived I was informed that I no longer worked there.

Now, I cannot prove that the seizure was the reason for my termination but at the same time, I never really received what I consider to be a justifiable reason for that termination, and the timing seems a little coincidental. As I said, I cannot prove that this was my reason for termination, but I believe it was. In my opinion, it was down to some of the issues I still have as a result of my ABI . In particular, the effect the ABI has on my epilepsy and how retaining information as long term memory made it difficult for me to learn the way a new employer wants me to do things and the methods and routine they use. That’s the worrying thing. While we like to believe in equal opportunity, and that we, as victims of ABI, are no different from others, in the eyes of others, we are. That statement is particularly relevant when it comes to employers. If a large-scale company with a union employs you, you’re less likely to have those kinds of issues as there are procedures that need to be adhered to and processes that need to be gone through.

However, smaller businesses, which do not have those sorts of protection for their employees, are less likely to persist with you, attempt to understand your situation, and help you make the necessary adjustments any new job requires. The reason being, and I’m sorry if this sounds cold but I am merely talking from my own experiences, that for an employer, its an inconvenience knowing that an employee could collapse at any point and disrupt the working day, or having to persist with them regarding the “on the job” training. It is much easier to get somebody in who does not have a situation you need to accommodate for.

This has left me in a position where I now have no job, through no real fault of my own, all of my previous work experience in the service industry counts for nothing as I have no other industry experience on my CV (with the exception of a years labouring when I left school at sixteen). I have had to move back in with my mum and dad as an epileptic I cannot live alone due to the health risk but due to fatigue I still suffer from as result of an ABI I cannot work full time anyway. The point I am trying to get to is, that even with something as seemingly mundane as applying for a job, the consequences of my ABI (and the effect those consequences have on my epilepsy) play a huge part in what I can and can’t apply for. As such, any job I am lucky enough to get will then have a large effect on my work life and life at home; either in the way it adversely affects my epilepsy, or my ability to engage with people in the work environment.

A Social Life

When I look at this part of my life, it is only really over the last year that I have taken charge of my social life. The thing is, after my ABI, I was determined to desperately cling to the life I had prior to it. I don’t think that this is unusual but I have not met many other ABI patients my own age to talk about it with. As I have said before, upon my discharge from hospital, there was a general feeling amongst my family and friends that things would return to a state of normality in due time. However, it took me nearly four years to recognize that this was not the case. The ABI was going to be permanent.

As I say, I was twenty years old when I was released from hospital (my twentieth birthday happening in the rehabilitation wing of a Dorset hospital). This time is a crucial time for young people, a time where we do not want to be inhibited by the rules of parents and the thoughts of general society. It is a time where we want to be free. Those years in the early twenties, in my opinion, are the years where you find out who you are and what you really want to do. I believe they define your future.

For me, I was a step back. I had to rediscover who I was before I could truly discover and define who I wanted to be. One of the key things that defined me was a realization, a moment of clarity if you will. The key to moving forward for me was the phrase “Who cares what they think?” Because the truth of the matter is, when you go through difficult times you find out who your friends are, at least I certainly did. The people who you need to keep in your life rise to the occasion magnificently. These people make allowances for your difficulties, your problems, and accept the reason you can’t do certain things because they are sympathetic, sensible, beautiful people trying to empathize with your situation. The vast majority of them however, you will rarely see again because to them, you are nothing more than an inconvenience and trust me you are better off without them.

It took me until years after the ABI to realize that many of the “evening out” options with people seemed to revolve around alcohol, at that age they do anyway (I’m not sure if it’s purely an age thing or whether the place I was living and the drinking culture that was there also contributed).

Since the ABI, I have greatly reduced my alcohol intake, my desire to drink is lessened greatly due to the way it makes me feel for the next day or so (absolutely awful if you must know). Unfortunately, I am and most likely always will be, one of those people who wants all or nothing. I have an addictive personality. I have a fairly heavy smoking habit (as in daily, though this was the case pre-ABI). If I want a drink, I want a lot of drink, you know? Over the last year, I really started to realize what the consumption of alcohol did to me; it had a tendency to induce seizures a few days after a booze binge (I recently found out that the time alcohol is most likely to induce a seizure is when it is just leaving the body, approx. 48 hours after the binge has taken place), or even if I didn’t have a seizure, I would be fit for nothing for 48 hours anyway. Over the last year or so, I have (for the most part) given up alcohol entirely, but as a result of that, what was previously a full diary in terms of my social life, now has very few entries.

The key to a healthy social life, where you might want to join some friends for a drink at a pub, is to surround yourself with people that have tried to empathize and attempt to understand your situation for what it is and why you can’t do the things that everyone else can. Surrounding yourself with people who are aware of your situation and care for your well being (not just their night out). This will not only benefit you in terms of your health and well being but, while you may find yourself with fewer friends in terms of the number, they will be better friends who want what is best for you. The absence of that added peer pressure, which for young people especially, can heavily influence decision making most often for the worse (that is a particularly relevant point because post-ABI, our decision making ability is not good at the best of times).

Let me give you an example. After I was discharged I was told that I was not allowed to drink alcohol for an entire year. I live in a very quiet town with very little going on. Going out for (often, more than) a few pints in the evening was a large part of our social lives for my friends and me. Since the ABI, I made it something of a mission to greatly reduce/give up boozing. Having made that decision, I realised that I am still in regular contact with only one of those people on a regular basis. This is because the others have faded away as they realized I would no longer be the beer-swilling socialite who would go along with what the group wanted to do, that I was pre-ABI. They were unwilling to make the effort to understand and make allowances for my abstinence.

As I have tried to make clear, building a social life that is of benefit to you as a patient and finding appropriate activities and (as a long term goal) appropriate employment is both extremely important and extremely difficult. So, on the next few posts I am going to focus on dealing with doctors and trying to understand where they are coming from. Following on from that, finding charities and organisations that allow for and ensure a safe environment for people with ABI ‘s and Brain Injuries in general to be able to socialise and meet people with similar interests and ideas.

My blog is only early stages so I am still getting to grips with the medium. I think I am starting to get the hang of what people are after, so I hope you are all gaining something from it. I will try from now, not to merely repeat what I did in terms of a methodology, but try to address how those things make me feel, how/whether they affect me today and my subsequent conclusions (what I have tried to do over the last few posts). I hope you will follow me on Twitter, my handle is @ABIblogger, and that my posts are beneficial to you, whether patient or carer.

Socialisation & Engagement (Part 1)

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury. So far, I have focussed heavily on the mentality and approach we took as a family throughout our never ending pilgrimage towards recovery from an Acquired Brain Injury. My intentions in the previous posts (“Rewiring The Brain”, and “Rewiring The Brain (Part 2)”) were to stress the importance of both giving the patient some time to assess themselves and ascertain where the damage has been done, and allowing them to realise for themselves what strengths and weaknesses they have. What I was hoping to stress, was the importance of the assessment of cognitive function, of thought patterns, the way that the brain works (or perhaps doesn’t work anymore), and identifying where problems occurr. The next few posts will focus on the importance our lifestyle; the things we consume, our sleep pattern, our social activities and conduct etc. and how social pressure and expectation can put pressure on patients that may adversely affect their recovery progress. 

Today, I’m going to examine the first of three topics that, once you have established what a patient is and isn’t capable of and the level of stimulus the patient can handle, will inevitably affect the way that a patient socialises. The first topic will be talking about the physical and cognitive limitations that are placed on us; the second, from a health and well being point of view and the importance of maintaining the discipline of a healthy lifestyle, finally, having taken into consideration the previous two factors, when (as I did) a patient may (or feel it necessary to) reassess what it is they like to do, what they don’t like to do, and what they are able to do for fun. Once again I feel that the aspect of socialization and engagement is particularly important, so I will be splitting the topic into three separate posts to give each one the focus it deserves.

(N.B. Within these two topics, social science will also have a contribution to make. Unfortunate as it is, the association’s people make with disabled people (I consider myself a disabled person, so please forgive me if I have offended anyone) are still extremely negative, and I would be surprised if, as a carer you do not see prejudice in some form or another towards the loved one who is suffering post-ABI. If, like me, you’re a patient reading this, don’t be surprised if when the drama dies down, you find out you have a lot fewer true friends than you thought, friends who really care about you that is. I do not say this to be unkind, I just do not want other people to be in the same situation I was when I finally came to my senses and was hurt and depressed about it).

Physical Limitations

There are plenty of potential physical ramifications and disabilities that can emerge from an Acquired Brain Injury. The brain controls all of our physical capabilities and any damage to a particular section of the brain can have devastating effects to our body. I count myself incredibly lucky, after the injury I had, that I am still able to walk around, hold a conversation, and do most of the things that I could do before.

The most affected part of my body/brain was actually in terms of my senses; smell, taste, hearing and sight, four of the five senses were drastically affected. I am permanently deaf in my left ear (the only thing I can hear is the permanent tinnitus I also acquired), I lost my sense of smell (only particularly strong smell such as vinegar, or cleansers and cleaners tend to get through. Though, I occasionally get lucky enough to smell my parents cooking which has become something of a treat on the occasions it gets through), for two or three years I was without a sense of taste, and finally, I spent about three years with a residual squint and severe diplopia in my left eye (diplopia meaning my left eye and its line of sight was not synchronized with the line of sight in my right eye creating an effect of severe double vision). As I say, I consider myself relatively lucky to escape with just this. Although, due to the extent of the injury to my inner ear, combined with the diplopia walking around and maintaining my balance was difficult for me. It was only really after a surgery to repair the diplopia in my left eye that the issue with my balance started to improve to any great extent. However, I still cannot stand on one leg for more than a matter of seconds.

For a long time, the issues with my sight and balance meant that when leaving the house I had to be accompanied by an adult, normally linking arms with them, to ensure that I didn’t fall over. I was also required to wear an eye patch to rectify my double vision. These things, as well as my surgery scars, contributed to me being singled out from the crowd of “normal” people that was the general public and was certainly affecting my confidence and self esteem.

Cognitive Limitations

The cognitive limitations I had, and still have to live with, were far more in abundance. As I have said previously, discussion with more than one or two people, for more than a small amount of time was difficult for me to handle. Crowded places caused problems (and still do to some extent), as did physical contact (personal space is something that I have issues with, both in terms of people being too close to me, as well as me invading other peoples space). In terms of thought processes, multi tasking, processing chaotic situations, judging propriety of what I am saying, and general decision-making are issues as well.

I realized this fairly recently, before you have a brain injury you have a tendency to take your brain, and the incredible things it does, for granted. The limitations that have now been placed on me make it extremely difficult for me to find and keep work, establish and maintain relationships, to follow through on things, my moods are erratic, and  I cannot seem to maintain a degree of calm in my life so that I do not suffer from stress and anxiety. None of these issues were present before my brain injury. Or perhaps, to be more accurate, those issues were all there, they were just kept at bay by a fully functioning brain with fully functioning pathways.

I will tell you to what extent these factors have affected my life at this current point in time, as it shows the difficulty people recovering from a brain injury have in attempting to regain some normality in their lives. After all, us ABI patients do not want to be defined entirely by our health situation; we are human beings too. We have the same desires, ambitions, needs (emotional and physical), and wants as any other person. Emotional fulfilment is something that has a lot to do with the kind of people you surround yourself with and engage with regularly.

However, the process of socializing with other people (Whom? Where? When? What?) is influenced by so many factors, but has a tendency to be influenced most heavily by the group of people that hold the position of majority within that social group. For example, whoever holds the numerical majority in terms of the gender, say if there are more boys than girls, the activity will most likely be something, at a location, more boy friendly than girl friendly, if you see what I mean. Most of the factors than contribute to deciding a social activity tend to be things such as gender, common interest, convenient location, all relevant issues that can be fairly easily compromised on. With something such as an Acquired Brain Injury, there are certain things that, maybe, can’t be compromised on.The task of mixing with people my own age was made all the more difficult by the impropriety of the social activities people would want to do that weren’t suitable for me: going out for a drink (I had been told by doctors that I shouldn’t drink for at least a year), playing football (contact sports were most definitely out, for me), it meant that the possibility of interacting with people of the same age, who had similar interests, was extremely limited.

I found that with something as out of left field, as intangible, as misunderstood, as a head injury, it is more convenient for the majority to cast aside the minority. So instead of finding activities me and my friends could all do, I generally stopped getting the invite or found myself choosing not to go. Finding young people, my age, with my interests, who wanted to accommodate my situation just so that they could spend time with me, were few and far between. Where much of socialising is done in large groups amongst young people, it made it almost impossible for me to go out and mix with my peers.

I implore you to stay with me on this subject over the next few posts here, because I really hope to be able to put the life of an ABI patient in stark contrast to the life of a “normal” (for lack of a more appropriate word, that is not to say that people with brain injuries are abnormal) person. I will hopefully be able to give people who engage regularly with an ABI patient some perspective as to what it is like to live that life. I also believe that those whose lives centre on an ABI patient will soon come to realise what I am talking about, if they haven’t already. Please come back again to read on Monday, or better yet follow my blog on WordPress and follow me on Twitter. My Twitter handle is @ABIblogger and get in touch. I more than welcome constructive criticism and am looking to try and get some good discussion going, hearing from other people and what they have experienced. Hope to hear from you soon!