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.

 

Changes In Function & Ability

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. The subject of change was a key part of my post last week. It is a theme I will be continuing (with the exception of this Thursday) over the next week or two. Much of the recovery process after a head injury revolves around change and how we adapt to that change. Without a doubt, there are some we should embrace, in fact it is necessary to embrace them or we will find ourselves becoming increasingly bitter and angry at the poor hand we have been dealt. However, as I highlighted in the previous post, there are certainly aspects of our personality that should not change, such as moral principle, ambition and the passions that drive our actions. After all, these are the aspects of our personality that make us who we are.

However, going back to my first point, I’ve said it many times before that there will inevitably be changes, things that you struggle with after a brain injury, the same way that I do. Often the changes that are induced by the injury will be the most difficult things to come to terms with and adapt to because without prodigious brain power they can’t really be explained or understood that well. In this post I’ll be talking about specific things, abilities, personality traits, and cognitive abilities that were affected by my injury. This will be about coming to terms with those losses and ways I have found to overcome the difficulties their absence (or presence) present.

Loss Of Abilities

Where there is damage to certain areas of your brain, there are problems and difficulties in performing certain tasks you had previously mastered. Now, depending on which ability has been affected, this can have varying degrees of impact on your day-to-day life.

For me, as someone who has always been very interested in books and literature, I was devastated to find my ability to read had been severely affected by my injury. I remember thinking how strange it was, back then just off the back of the injury, I could not articulate exactly what the problem was. Now, I can describe it perfectly. I was not having a problem with recognizing the words, what they said, what they meant. Nor did I have problems with being able to imagine things, pictures, scenarios and so forth. Neither of these two things, in isolation, caused me issues. It was the process of having to do those two things in tandem that was hindering my ability to read. Reading is essentially a parallel thought process, reading the description of certain people, certain actions while at the same time creating an imaginary construct of their physical appearance, the characters performing those actions, character reactions and saying the words.

Things That Helped Me Improve

This difficulty persisted with me when a year on from the head injury, when I was leaving to attend University, I was still struggling badly (a bit of a handicap, really, when you are going away to study). It was only when I arrived at university and a friend lent me a copy of one of his graphic novels did I start to see any improvement. The comic book medium eliminated the requirements of that parallel thought process.

With the characters already being constructed in an illustrated form, there on the page, it meant I only had to read the words (not imagine the character at the same time). As well as this, there was the added bonus that the sentences were short, simple sentences, which made it even easier to read. As I read more and more comics that I bought or borrowed from the local library or from friends, my reading ability improved, as did my stamina. I found I was not suffering from fatigue as badly as I had done previously. Most of the time in my first year (which thankfully only made up 10% of my overall grade) was spent trying to strengthen my reading ability and my brain function and gave positive results.

This put me at a huge advantage in my second year compared to when I had just arrived at University. While there was no way I could read a full textbook, I was now in a position where I could use the index to find the appropriate content and extract it to use in essays, putting me on as close to a level playing field as I was going to get.

Differences In Your Brain Function

After my brain injury I found there were quite a few differences in the way I thought and the way my brain functioned. A particular area of my thinking that was affected was my decision making process. The thing with this is that it, somewhat indirectly, affects your personality as well due to the fact that the decisions we make obviously inform and dictate the actions we perform. I found that I was at two ends of the same spectrum and it is still something that I have problems with today.

When it comes to small decisions, decisions that could be considered unimportant or inconsequential (for example, a food order at a restaurant), I am hugely indecisive and it takes me a long time to come to a conclusion. Whereas with larger, more significant and important decisions (such as financial ones), I am hugely impulsive and rash and don’t really think the issue through as thoroughly as I should and I have a tendency to spend money on a scale I shouldn’t. This also means that I am more vulnerable to being conned or manipulated.

Asking For Help Is Not A Weakness

I don’t really know if there is much advice I can give you on how to solve a problem such as that in terms of how to improve your brain function. What I can say though is that there is nothing wrong with admitting that you need help and trying to find ways to work around these disadvantages with the help of others. That is, to me anyway, a key part of how I am able to live a somewhat normal life: through the help of others. For example, to counteract my impulsive nature regarding money I have is safe, it now resides in a joint bank account with both mine and my fathers name on, requiring joint signatures. Meaning neither one of us can access the money without the others consent. He has always said he would never stop me from accessing any of my money (some of the money in there is his to) if I really wanted it, but requiring his signature just acts as a firewall between an excited me, excited about a possible purchase or investment, and my savings.

Thinking Your Way Round Things

Many of the challenges that brain injury patients must overcome in life can often seem insurmountable. The truth is, if we look at them and approach them from the perspective of a fully abled person then I think they will be insurmountable. I believe that that is where much of the difficulty lies: approaching life from the perspective of being fully able having not really acknowledged the extent of our problems, while at the same time being pulled back and inhibited by them.

We have undergone huge change in our lives, coming to terms with those changes is an incredibly difficult process but an essential one if we are to live a full life and succeed in the way I know we are all capable of doing. Coming to terms with those changes will inevitably mean adapting the way you live your life, thinking about things in different ways, receiving help where you didn’t need any before, again none of these things are easy realities to face. However, when you do eventually get to a place where life has settle down, you will realise you have been moving towards a state of independence that you did not even see coming and you will be closer to it than you have ever been in the years that have elapsed since your life has changed so hugely.

Thanks for reading again this week. I hope this week’s update has been useful to you and you have even enjoyed it. Please, follow me here on WordPress or to get updates on the blog and what I am up to, follow me on Twitter, my user name on there is @ABIblogger. Thanks very much and be well!

Carers Rights Week…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Much of this blog goes about celebrating the accomplishments, the perseverance and generally the attitude of people who have survived brain injuries. As I have covered in previous posts, a brain injury changes so many lives. What I have not touched upon thus far is the impact it has on the people that take it upon themselves to care for us patients throughout the recovery process.

This week, as carers rights week, seems like the appropriate time to give credit where credit is due. I feel it would be appropriate to talk candidly in this entry and highlight the things that our carers do for us, the sacrifices they make, and how much credit they deserve. I often think that this is glossed over within the mainstream discourse regarding head injuries. Of course, the discussion that is being had within groups (i.e. charities, organisations, care groups and medical services) are well aware of what is required in the day-to-day care of patients, regardless of injury type, because they see it everyday.

The purpose of this post is to hopefully make more people, those who are not directly involved with patients on a regular basis, more aware of the kind of things that are required of carers every single day.

What Do They Do?

Well, as the name suggests, they care for the patient. That is putting it in a very simplistic form, but in essence that is the job description. What the job entails however is much, much, more than that. Reliance and trust are key components to the carer/patient relationship. At best the carer can be relied upon to do simple household tasks or other fundamentals such as grocery shopping, at worst they can be required to help the patient use the bathroom, clean and feed themselves, it purely depends on the severity of the condition.

My carers (i.e. my mother and father) help me with many of the things, which have to be done in day-to-day life. The reason I live at home with my parents is because of the necessity for care. Living at home, while certainly not ideal for a 26 your old man, takes much of the pressure off of me, pressure I find difficult to handle when living alone. The things that tend to stress me out are often what would be considered as fairly standard tasks, or tasks that you need to get used to as you progress into adulthood: the complex issue of setting up and paying bills, my newfound impulsive nature meant I was not very good at handling my finances, I had (and still do have to a certain degree) issues with socializing and engaging with people. As well as these, I generally needed to be reminded about basic everyday issues such as taking my medication at the right times, eating healthy meals at the correct times, washing and showering and basic hygiene as well as cleaning up after myself. My parents have helped me, and still help me, with all of these issues since I suffered my brain injury. It just goes to show the extent and effect brain injuries have, when six years later I still have a high degree of dependency on my parents. After everything they’ve done, the love, patience and support, I cannot thank them enough.

What Do They Need?

This is an intriguing question to me. It is one I have pondered over many times. Is there any way I could make their life easier? Is there something I could get for them that would ease some of the pressure? Do they need help? It has only really dawned on me recently that what they really need, what they want and what they are struggling for, is to see us, the patient, progress and get better.

I have said many times in previous posts that with the right attitude, mentality, work ethic and support, things can get better. I do believe that, as patients, we do have a certain obligation to our carers in some ways, to try every single way to improve our situation. Not just for our own well-being and health, but also because an improvement in your health is exactly what everyone involved in the recovery process is working towards. I do not mean to miscommunicate my point. The point is with carers that they tend to do it not for any tangible reward, but for our benefit. It is, in essence, a selfless act. What I mean is, there is always that danger that we (the patient) can slip into a state of self-pity or depression where you do not want to do anything. Trust me when I say, when you’re in that state of mental health, progress is nearly impossible. I believe that the people who are caring for you, who are really trying to help you towards improvement, deserve better than that.

On that note, I suppose it is just as relevant to mention gratitude. I realise this may seem a very obvious thing, however it does go along way, as does simple politeness. Simple pleases and thank you’s will go a long way to improving the patient/carer relationship. Knowing that you appreciate them will give a carer a sense of importance and gratification, which will go a long way to boosting their confidence and self-esteem.

Taking A Break

When we consider this, what it is they need and all that our carers do for us, I think we also need to consider the consistent pressure they are under. They are there for us every day, whenever we need them. They give up a lot and make sacrifice, after sacrifice to ensure that the patients are in the best position possible to continue down the road of recovery. Thinking of having to make such a large commitment to something or someone boggles my mind. I would also add to that that it cannot possibly be healthy to continue that kind of lifestyle relentlessly with no respite.

I think it is essential therefore; that carers have the opportunity to take a break from their responsibilities. A couple of days away with a partner, just had a little time to themselves can be so valuable and so important to the patient/carer relationship. Having space away from each other prevents tensions from rising and can decrease the feeling that you’re smothering one another. I can speak from experience and say the both of those feelings are familiar to my parents and me and having time apart from one another will make spending time together and living together all the more bearable.

I realise that many of you will be asking how it is possible the carers to spend time away from the patient when it is very rare that there will be people whom you trust with both the time, the personality, and the knowledge to take on the task. My advice would be to go to the many charities and organisations that revolve around brain injuries. They will be able to give you advice and contacts to ensure that a patient will be well looked after if you should need some time away. Speak to those charities about this very subject and I’m sure that they will tell you the same thing: personal space and recreation is incredibly important.

I will sum up this blog post by sending out both gratitude and respect to those who take on the task of caring for anyone with any illness. Where we can’t, you do! You make our lives easier and more livable for which we cannot thank you enough. I would ask you that, during carers rights of week, you do take some time to yourself and try to have a day that is just for you. God knows you deserve it.

Thanks for reading this weeks post. I hope it has been helpful and informative. Please, follow me here on WordPress and if you are after any additional information on the blog, follow me on Twitter (@ABIblogger). Thanks again and be well.

A Different Outlook…

My name is Tom; I am 26 and the survivor of an Acquired Brain Injury. In the last post we looked at the task of staying true to who you are despite the challenges you are facing. Even with all the uphill struggles we face, the hurdles we have had to and are yet to overcome, staying faithful to who we are should be something that is top of our list of priorities. Nobody has the right to say we cannot do something or that we are unable to do something, the only person that has the right to say that is us, at the end of the day.

However, what will inevitably change after a life-altering brain injury is the way that we look at things. I think it is almost an instinctive human reaction to analyse yourself, look at your life and what you’ve been doing in the past, before asking: “what do I really want out of life?” and “is this the best I could be doing?” I believe it is hugely important to ensure that the past stays where it belongs, in the past, and we do not allow it to dictate our future.

Reflection

This is one of the things (at least I have read that it is) that is most common after a near death experience. People, people in general that is, have a tendency to look back on their experiences and examine them from the perspective of those closest to them or from the perspective of those immediately affected by the action. In other words, empathizing with the people we have affected in our day-to-day lives.

Again, what tends to be a natural human reaction, we tend to look back on the things we could have done differently. We tend to be haunted by failures of our character more than celebrate it when we do something good. As I have progressed after my ABI, I tend to look at myself before I suffered my injury. This is a subject that really haunts me. I think of when I had a fully functioning brain, a brain with no restrictions or damage and the power that the human brain has. What I really reflect on his how I wasted much of that brainpower. I had always been intelligent. Sorry, not to be arrogant but it’s the truth. My problem was always with work ethic. It never seemed logical to me to devote myself to something when I had the ability to coast by and be able to enjoy myself while I did it. Now, when I compare how I was to how I am now, I wish I could go back and have a good word with myself. I am very proud of what I am achieving in the here and now, but it pains me to think of what I could be doing if I had the work ethic I have now, back then.

That’s the thing though, isn’t it? I firmly believe that the work ethic I have now is almost wholly down to the brain injury I suffered. What I have gained from this horrible period in my life is a maturity I would not have had otherwise. It has given me the ability to see what I should have been doing the whole time and what is truly important in life (I’m sorry if this is starting to sound a little bit cheesy). Along with that maturity I have also gained an inner strength that makes me firmly believe that I can deal with any situation life throws at me.

Second Chances

With this reflective attitude, an attitude of looking back at what we have done that we are perhaps not particularly proud of comes self-doubt. One thing that particularly haunted me was that, if I was thinking these thoughts, would people who I knew have thought them about me if the worst had happened?

I firmly believe that when you have come to terms with the injury a little, it provokes a change in your life perspective. If you are approaching your new post-ABI existence in the right way, you will, with time, be able to see that it does give you a “second chance” (I put that in quotations because, again, it comes across as a little cheesy). If you have, as I mentioned in the section above, looked at how you lived your life prior to the ABI with a little shame some times, then the life post-ABI gives you that chance at redemption, at living a better life and being the person you want to be and working towards being seen the way that you want to be seen.

The Past Is The Past

This post has been a little deeper and a little more reflective than I had perhaps anticipated. I apologise if it has come off as preachy or a little cheesy, but it is something that I believe needs to be said. These issues are extremely complex ones and can be very confusing to people when they have gone through a life changing experience.

What I would say I have learnt from the experiences I have described above is that the past is the past. That is where it belongs. It certainly should not be allowed to continue to resurface and haunt you in the present and to dictate where you are going in the future. The way I see it is that if we are so ashamed of or disappointed by certain aspects of who we were before the brain injury, or how we acted in certain situations, or by the amount we achieved, then we should be using those past experiences to mold ourselves into something better; acting the way we know we should have acted all along. Take me for example; in the six years since my ABI, I am working harder than I think I have ever done before. I also believe I am achieving far more than I was doing previously. All of that comes from the experience my ABI has given me and just as importantly, a desire not to be defined by my injury or the things that I did in my past.

Thanks for reading everyone. I hope you have enjoyed this post (even if it was a little more emotionally orientated than usual), you can follow me here on WordPress and to get more information on my blog, follow my Twitter handle @ABIblogger. Thanks and be well.

Never Change Who You Are…

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. After suffering a brain injury it is inevitable that your life will be changed. When I say this I am talking about changes perhaps in your cognitive ability, in certain physical abilities or in the way that you look at life.

The one thing you should ensure never changes, is who you are as a person. After I suffered my injury I found that the majority of my desires, passions and drives remained similar to what they were before it. Six years later, I am still working towards achieving the goals that I set myself post-ABI and slowly but surely, I am starting to get there. With persistence and determination, and just as importantly, by staying true to yourself I firmly believe you can achieve anything you set your mind to. With that statement in mind I will also share with you some of the things I have learned as I have made progress.

Nobody Knows You Better Than You

This is one of the key things you must continue to tell yourself. Off the back of a brain injury there will be plenty of people who think they know you better than you know yourself. They will think they know what you want, what is best for you both in the short term and the long-term, and in some cases they may even place a glass ceiling above you. What I mean by that final point is that often due to the issues that we struggle with as a result of our injuries, people seem to have placed limitations upon what we can achieve. A maximum expectancy, if you will. This is one of the things that I have struggled to cope with since my injury, the lack of belief people seem to have, peoples assumption that I deem it appropriate merely to “settle”.

I will give an example if I may. I am currently, as I have mentioned in previous posts, living at home with my parents. This is purely due to a combination of my epilepsy and the effects of my brain injury, which make it not only impossible but also dangerous for me to live on my own. The lack of independent living is not from a lack of trying. I have worked Jobs before, as well as living independently both in London as well as in my hometown in Dorset. After I came home from the year in London and I got settled in my new flat in Dorset I returned to the job I had been working before I moved, working as a waiter. A month or so after my return, I had an appointment with my neurologist to assess my progress. It was at this meeting when he suggested that perhaps it was time to stick to the waiting job and see how things went.

The point I’m trying to make with this example is that purely because you’re struggling with things, it does not mean you have to settle for life that you’re unhappy with all that is beneath the expectations you set for yourself. You know what you are passionate about, you know what you want today and most importantly you are aware of your own abilities and how far those abilities can take you. Nobody knows these things better than you so do not allow anybody to presume that they do. That goes for friends, family and doctors. While their advice is important and most likely well informed, they cannot possibly know what is going on inside your head.

Don’t Just Consider The Here & Now

The terrible circumstances of suffering a brain injury certainly dictate some of what we do in here and now. Unfortunately, that is inevitable. Not only do we live with the physical and mental consequences of the injury that causes problems each and every day, but also it can force us into circumstances that we did not foresee.

If, at the age of 18, somebody had asked me where I would be when I got to the age of 26, I certainly would not have said living at home with my parents in a cramped two bedroom house. However, these are the circumstances that I am in. The only way to overcome the challenges that we face and improve our circumstances, is to persevere: to get up each and every day and carry on. It took me along time to come to terms with this fact; that any progress I was going to make was going to be gradual. If you can accept these things and, as I have said in previous post, even embrace them with a positive mindset, you can go along way to insuring that what you see as a negative circumstance right now, will not affect who you are and can even be turned into a positive circumstance further down the road.

The other approach to enduring the negative circumstance is to allow anger, self-pity, and frustration to take hold of your entire being. The result of this, and I speak from experience here, is that you fall down into a dark hole of despair. For some people there is no coming back from this. So focus your energy on remaining positive and trying to look for the good things in your circumstances, because they are there and the more you focus on the positives (i.e. what you do have as opposed to what you don’t have) the less chance there is for the negative thoughts to take hold and take you to place you can’t get back from.

Things Will Get Better

It is one of the things that are really difficult to deal with on the road back from a brain injury: that progress is slow. What the above post has been trying to say, is that we always need to stay calm and think clearly. While it is in the human nature to seek instantaneous results, that is almost an impossibility with something like an ABI. To be more specific, the point I’m trying to make is that throughout the recovery you should always try, as best you can at least, to stay true to who you are. I do not believe that a brain injury dictates every facet of your life. Nor do I believe that it changes every aspect of your personality. I consider myself a person who is that different now, than the person I was before the brain injury (perhaps a little more mature and a little less naïve). You certainly should not give up on the things that make you an individual and I firmly believe you should continue with trying to achieve similar goals to the ones you had before your injury. Because the truth is, you can!

Post-ABI – Return To Work (Part 2)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out, I approached the subject of returning to work after suffering a brain injury. It was only when I reach the end of the post that I realized all the advice I had given was really regarding all of the preparation needed before actually applying for a job. So here I am returning with the second part of that blog post, hoping to give you some more concrete advice directly related to the job market for us people suffering from ABI’s.

Being Honest With Yourself (Again!)

This may seem like a fairly obvious point but the job you are applying for must have a fair contract for somebody with a brain injury. All of the issues we deal with must be taken into account when applying for a job. One of the obvious ones to use as an example would be working hours. The majority of brain injury patients are unlikely to be able to work full time hours the same as everybody else. I say this not to generalize but to speak from experience. Ever since I suffered my brain injury fatigue has been a problem for me on a daily basis. As such, any jobs that I now apply for are either part-time or flexi-time. This piece of advice relates strongly to the last post, in particular the section about being honest with yourself and honestly assessing your abilities.

Similarly, if you have difficulty (as I still do) with large crowds, then it is not advisable to get a job working behind the bar in a nightclub. Much of this is common sense really and I’m sure that you are all sensible enough to know this without me telling you but I just thought it was something that should be brought up. What I am basically saying, in short, is to play to your strengths when you apply for work.

Being Honest With Your Employer & Co-Workers

The issue of honesty is an important one in any working relationship, even more so when one member of the workforce is dealing with a disability. If you are starting a new job post-ABI, it is vital that you make your situation clear to both your employer and your co-workers. As brain injury patients, we must overcome many issues in life that most people do not have to deal with. It is unfortunate, in this day and age, that overcoming prejudice in the workplace is one of those issues. However, in my opinion, this can never be achieved without 100% honesty on your part. Building a foundation of trust and honesty will go a long way toward overcoming it.

It is also important to remember that being upfront with your colleagues will most likely benefit you in the long run. People you are working with need to be aware of all the potential risks involved for you while you are in the workplace. For example, as a long-term sufferer of epilepsy, it is vital that my co-workers are aware of my health situation; know what to do should I have a seizure, and hopefully make allowances for the things I may not be able to or should not do. In the past, I have had seizures in the workplace and without members of staff trained in first aid, the outcome may well have been far worse than it was. Also, without sounding preachy, it is worth noting that if you suffer from something such as epilepsy, there is almost an element of responsibility to inform those you work with. I do not know if you have ever seen seizure but they can be very frightening things to witness. It is only fair to prepare your colleagues for what may happen while you are at work. I realise this will not apply to everyone, however I do know that epilepsy is a common consequence of a brain injury and it is a suitable example for me to give.

Pre-Existing Relationships

This is one of the first pieces of advice I would give to any brain injury patients hoping to re-enter the job market. Do your best to utilize any pre-existing relationships you may have in terms of employment. If you are still in touch with a former employer and you’re on good terms with them, it may be worth giving them a ring. Refreshing this pre-existing relationship can have many positive outcomes in terms of how successful you are while at work.

Firstly, if you have already worked for that particular employer, they will already be aware of what you can bring to the workplace and of your value as an employee. Secondly, having a job where you are on good/first name terms with the boss can only be positive with regards to your employer providing flexibility in the workplace to accommodate your health situation. And finally, this may seem like a simple one, when returning to work after an ABI I would suggest returning to work in an environment and with people that you are familiar with so as not to over stimulate your brain (potential consequences of this overstimulation run from fatigue all the way up to panic attacks and seizures).

Entrepreneurship

Finally, we get to the final heading of entrepreneurship. I will only keep this brief; as I’m not sure I know enough about it (yet). For some people after a brain injury the stresses and rigors of full time employment are not possible. It is all simply too much for them. So an alternative option is to perhaps start your own business. Think of something that you love, that you’re passionate about and would enjoy doing each day and then try to think of a way to monetize that passion. The bonuses of this (in the idealist thought pattern) are that you can arrange your own working schedule, pick your workload for the day and be responsible for all of your own business decisions. In some ways enabling you to get out of the rush and hurry of the world that is being employed by someone else.

Try Every Option

Sometimes it is difficult not to feel a little hard done by when, as a brain injury patient, you consider what you have lost. What we need to keep telling ourselves is that we are every bit as valuable as any fully abled person. We are hard working, friendly, driven and we have ambitions and goals as well. Only a positive attitude and hard work will overcome the rubbish hand we were dealt. It does not seem right that we should not get to pursue a passion in the work place because of sheer rotten luck. So my advice would be to try everything that you can and to go into it with an open mind. An opportunity, no matter how small, can always lead to something bigger and better. After all, that’s a place all of us are trying to get to, somewhere bigger and better, am I right?

Thanks for reading again. Please, follow me here on WordPress if you like what I am writing or find it helpful. To get more info on blog updates, follow me on my Twitter page (@ABIblogger). Thanks again and be well!

 

 

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.

Post ABI – Returning To Higher Education

As I have stated before, staying positive and having a goal to work toward is a key part of the recovery process post-ABI. Whether they are small goals or big ones, having a sense of accomplishment and pride builds self-esteem and confidence to move onto bigger and better things. I firmly believe that most, if not all experiences, in life are as available to us as victims of head injuries as they are for any other person. We shouldn’t feel sorry for ourselves; we shouldn’t allow it to dictate our entire life.

In my opinion, what we should be doing is recognizing where it does have a significant impact on our lives and finding ways to work around these problems: finding ways to do the same things everyone else does while keeping the problems we have in mind and tailoring our actions and choices to suit our problems. Today I will be talking about education, specifically higher education at university and the pursuit of it. I will be coming back to further education in a later post. It should also be noted that I am giving a warning: the pursuit of higher education such as a degree is extremely difficult even for those who don’t have a brain injury. For us it is far, far, more difficult. So only pursue it if you are 100% sure you want to. Don’t let anyone else pressure you into doing something you don’t want to do.

Picking The Right Course

This is one of the vital elements of going back into higher education. Ensuring you have picked the right course will eventually impact on so many parts of your university experience. What may seem fairly trivial issues will have an impact on fatigue, morale, mental health, and issues with all of these things combined can lead to bigger problems on how you look after yourself in terms of diet, tidiness and so on.

Working Hours

One of the first pieces of advice I would give is to check the amount of hours a week the course has. It is important not to bite off more than we can chew. Over stimulating the mind can cause extreme exhaustion. When I was at university I always did my best to have a nap each day after my lectures to try and keep up with everything. It was a strategy that worked well for me and kept everything on an even keel. If you have days where you are in lectures for six or seven hours each day, for someone with a brain injury, it extremely unlikely that you will be able to manage all the other aspects of your life (particularly your health) and still be able to keep up on your course.

Examinations?

Another important thing to consider is the type of examinations that the course has. Most university prospectuses will include the type of examinations it uses on the course information page (each course being different depending on the subject). It is normally split into percentages, for example 40% coursework, 60% exam. The course that I chose, scriptwriting, was 100% coursework based. This was much to my advantage due to the problems I had in terms of committing things to memory. I would advise anyone looking at higher education to go for a course that is mainly written. The worst I had to endure was a timed essay where you are allowed to bring in notes anyway. Choosing a course such as this greatly improved my chances of success and turned out to be a good decision as I emerged with an upper second (2; 1).

University Resources

When applying for a course I should make it clear to anyone reading this with a brain injury, or in fact any disability, Universities have funds and professional staff with jobs specifically there to help you. Even with austerity being the word of the day in the UK, if you are persistent and determined enough, and you’re willing to wade through the bureaucracy then you can get help. Take me for example, after much persistence and staying on hold from my father, I arrived at university safe in the knowledge that I would have: a note taker for lectures, weekly meetings with an academic support worker to keep me on task with my workload, monthly meetings with the head of the disabled students department to ensure everything was going well, and weekly appointments with a councilor to ensure my mental health and wellbeing was up to standard. It was not just this; I also received en-suite accommodation, and was given a computer and software to help me maximize my potential (things such as voice recognition software and essay planning software), a Dictaphone to record lectures and weekly meetings with a technician who taught me how to use all of it effectively.

In terms of being able to access this support, a good place to start is with the institute’s student union. They can provide you with an abundance of information on where to start, who to talk to and so on, they can really set the wheels in motion.

It Can Be Done

As I continue to say, I refuse to let this injury define who I am. Part of the recovery process is reintegrating back into society that you are different from. I say this not to be mean or unpleasant, it is merely a fact. None of your friends know what it is you have gone through, the things that you have to deal with every single day. But part of that reintegration is doing the things that everyone else does such as going back to work or going on to further education. Don’t let the problems and handicaps you have as a result of your brain injury stop you from taking chances. The help and the support is there if you are able to go back to higher education. If you believe in yourself and you have family and friends that believe in you to, then I urge you to do it. Going to university improved my cognitive functions, my social skills and my confidence no end. It can do the same for you; all you have to do is work hard and believe that you can do it.

Thank you for reading, as ever. Sorry this was a bit later than I intended because of a laptop related disaster. I hope you will follow me on WordPress , if you want more updates and info on the blog and brain injury stuff in general then follow me on Twitter @ABIblogger. Thanks again and be well!