Acknowledging Disability

It took me a long time to finally accept the monumental change that had happened in my life. In my past posts on Independence, Health, Employment and Taking Back Control, while being focused on being able to live as an independent adult with our own lives have all had a common theme of acknowledging where our strengths and weaknesses lie. In essence coming to terms with our disabilities.

Coming to terms with having something like brain damage and accepting myself as a disabled person, was a really difficult thing for me to do. However, more than six and a half years have passed since the horrible night I suffered my brain trauma and I can confidently say now, without fear “I am a disabled person with brain damage.”

Now, I used the word “fear” there. I personally think that’s interesting when I consider my brain injury in the grand scheme of things, purely on a human level. I have to then ask and analyse myself (again!) what was it that I was afraid of?

A Short Series Of Questions

So here I have to ask questions to myself, what were the things I feared that made it so difficult for me to admit that I was disabled? Was I afraid that, by admitting to myself and to others that I was disabled, I would be excluding myself from the rest of society? Did I fear rejection, ridicule and prejudice in a society that increasingly seems to be turning a blind eye to the plight of those in need? Where, in this new sense of self that I was coming to terms with, would I fit in? Finally, had I subconsciously adopted an unknown, subconscious prejudice (not vindictive, violent or exploitative, more a feeling of discomfort when in their presence) against “the other”?

A Short Universal Answer

The answer to all of these questions is yes. I realise I may be making myself seem more unlikable to you in admitting that but I feel it is only fair for me to be truthful. I would be doing you a disservice if I made up some weak, halfhearted excuse as opposed to telling you the truth that my fears were based on basic human instincts; the need to fit in, the need to have a place and a role in everyday society, the need to be “normal”. Of course these are things that everybody wants really. They make for an easier life, a life you can float through without analysing, thinking for yourself, challenging or disrupting the natural order of things. What I see when I look at all of those previous questions and the answers I have just given is that the fear that stopped me accepting myself for who I am after my brain injury is one very basic, human fear…

The Fear Of Change

The fear of change is a very basic and, quite honestly, understandable fear. As human beings we like security; we like to know when our next paycheck is coming from, that there is food in the fridge and that we have a job to do when we get up in the morning. It is obvious that this gives us a feeling of safety and purpose each and every day. So when something occurs that has the potential to disrupt that harmony, something that could take away the things we rely on to get us through life feeling contented and secure, it is only natural that we are wary, cautious or afraid of that change.

So when we ourselves are fundamentally changed from the inside to out, the organ that controls our speech, our movement, that voice in our head that help us make decisions, decide what to say or do, the consequences to our cognitive abilities is damaged so that we are (I realise I’m speaking universally here but I’m only speaking from my own experience) an almost completely different person to who we were. That is a terrifying prospect for both patients and their families. That the person you are and that they love will be different from the one that they know, have known for years and that they love and cherish.

I don’t know about anyone else who may be reading this, but I feel as though my brain has been switched with someone else’s since my ABI. I am a totally different person now. Taking on the challenge of recovering from an acquired brain injury is taking a step into the unknown; as I said it feels as though my brain has been witched with someone else’s. It’s like a game of roulette; you never know what number the ball will land on or whose brain you will get.

Carrying on from that, what do we rely on more than our own brains, than ourselves? When someone has suffered a brain injury, not even the best experts and consultants are willing to predict the ramifications and consequences until the patient is fully awake. So for those on the outside, looking at a brain injury patient it’s the fear of the unknown. Not knowing how much of the person that they knew and love they will get back.

What Do We Do?

Fear, we all suffer from just in different ways. When I look at the questions I asked myself earlier (barring the prejudice one), they are all reasonable and similar questions one would ask themselves in other more conventional life changes. For example, if they were moving to a new place, quitting their job to start a new business or getting back into dating after a divorce. Those types of fears are deeply rooted within us; the fear of change and of the unknown.

It’s what I have come to learn. Life itself is an unknown thing, full of change. We can’t control everything all the time and we never know what is waiting for us right around the corner. Whether that is meeting the girl of your dreams in a café on your lunch break for example, or suffering a brain injury on a night out. Life is peaks and troughs. If we can accept that life is an unknown, that it has good and bad elements and if we can embrace the fear that comes with that and confront it head on, we can move forward accepting ourselves for who we are.

I can safely say that I have fully accepted that I am a disabled person. Confronting the fact that life will change and it will throw bad things at you has made me a stronger person. Now that I have suffered my brain injury and have seen what is truly the harsh side of everyday life, because of the strength and the determination it has given me to prove to everyone that disabled people are incredible, brave, valuable and talented, despite the disabilities I have now, I wouldn’t go back to the person I was before.

Brain Injury Recovery – Where Do I Want To Be?

N.B. Before we start, may I apologise for my absence recently in writing fresh blogs inconsistently for, the last few weeks have been an unmitigated disaster regarding my epilepsy. You have been fantastic over the last five or six months and I can’t apologise enough. They have changed my medication now though, dosage and type, so from here I’m hoping for progress and more consistency on my part. Thank you again and please follow my blog, follow me on Twitter, my handle is @ABIblogger and share the posts on there, that would be immense! Now, we shall begin…

Going Back A Bit…

The lead up to this blog post goes quite a way back, so let’s start from there. Over the festive & New Year period, I was considering the idea of change and what that exactly entails. When I say change, I mean actual change. Not the usual rubbish you seem to get at that time of year; “I’m going to give up drinking,” or “I’m going to join the gym and go at least three times a week.” Most often, what actually happens is that the first promise is broken by the end of the first day back at work after the Christmas break when, after work, we’re gagging for a pint. The second is broken by a gym membership that is used three times, never used again but continues to take £19.99 out of our bank account every month for the next three years.

The problems with these examples are not the promises in themselves but the way in which they are made. The two examples I gave are very noble promises done with nothing but good intentions for the person’s health. However, while the promises in themselves are good ones, they are very rarely built on a foundation of reality, quite the opposite in fact. They are made in reflexive manner without thinking of the variables in their lives; the constraints on their time, their strengths and weaknesses and, in the end, the promise filled with good intent is doomed to failure.

Where We Are Now?

Now, my first post of the New Year spoke of the nature of self-assessment. Last week after a missed update (due to epilepsy related complications) I tried to lay it all out in the open for you in a way that was manageable in terms of length and that was hopefully readable and something you could all relate to. I would hope that in the month that has passed since I posted A New Year – Self Assessment ( all of you who have been reading my blog have had time to look at yourself, look at your current situation and ask what is possible and what is not, assess your own abilities & disabilities, strengths & weaknesses, what you enjoy and what you do not (hopefully last weeks post – Where Am I Now – should have given you some indication as to the type of thing you need to think about) Hopefully, having thought about these things, asked those difficult questions and answered them, having really looked at yourself, you will be able to answer another tough question: where do I want to be?

Where Do I want To Be?

I think there are certain things that we, as victims of Acquired Brain Injuries (ABI’s), can all say. From here I am going to assess the four things in a brief way (if I want into depth on them I’d writing an essay!) that most of us have a burning desire for. Firstly, I will be putting them in no particular order. To give them any kind priority would be insensitive and ignorant on my part as I know that many of you reading this would put them in a different order, may have completely different permanent issues than me, and some people would want to exchange one or two for other things (also I have ways to link up the subjects quite nicely in terms of the flow of the writing and the way it reads). The plan will be to go into these topics in detail in the coming weeks in the order they are listed in today and how to potentially overcome and work around the obstacles that have been put in front of us through misfortune or chance.

Independent Living

When I say independent living, I am speaking in the broadest possible context. Independence can only be defined, interpreted and achieved to the extent that our brain injuries and the subsequent disabilities we suffer from allow us to. Whether we are able to live alone and manage all the complexities with it; complexities such as housing contracts, sorting out direct debits for paying the rent & bills, or paying for insurance and council tax. I myself did not realise the extent of the complexities and technicalities involved in just sorting through the bureaucracy of it all.

Then there are other options such as living with a professional carer, parents, other family members or partners being employed as a carer (for which you can receive a government funded carer’s allowance depending on your income). As well as the carer’s allowance there is also the social housing list and housing benefit depending on the severity of the disability of the disabled person involved and the income of the carer if they are not a professional and are someone like a parent or partner.

Finding Employment

When it is all signed, sealed, delivered, then comes the issue of supporting ourselves financially and accessing the support (both in terms of financial welfare and front line social services. In this section the issue of employment will be particularly important. Finding the right employer, the right type of work for someone in our position, working hours, contracts and unions.

There is also the important issue of not allowing us to be discriminated against by employers. It is unfortunate but it does still happen and in many different ways. The important thing is to recognise when you are being discriminated against and when you are being treated unfairly and how to respond to that situation.

Looking After Myself

Maintaining personal hygiene, eating a healthy diet, regular exercise, cleaning your house or flat, washing your clothes. These are all important things we have to learn to cope with. But there is also the issue of building a social life, socializing with our peers, even forming romantic relationships. It is important to keep an eye on mental health as well as physical. It can be easy to slip into bouts of depression, aggression or mood swings. Here, I am speaking from experience; I know of what I speak.

All of these things come with independent living. Trust me, I have done it on three occasions, I am twenty-six and still living with my mum and dad.

To Have Control Of My Life Back

There are certain consequences of ABI that make life very difficult for me: panic attacks, mental health problems, increased stress, tonic-clonic epileptic seizures to name just a few. What I am going to do is work hard, research and learn as much as I can about my conditions and aspects that may benefit me: diet, exercise, things that may induce a seizure or a panic attack and record what I find. In the next year, I intend to know myself inside and out. So I can begin to take control and move forward.

These are the subjects, in that order, that I will be covering over the next four weeks. So come again next Thursday where I will be talking about independent living, the obstacles that we must overcome and the problems that are presented to us as disabled people. So follow Life After A Brain Injury  get the next update direct to your inbox. For more news and updates, follow me on Twitter. My Twitter handle is Finally in addition to Twitter, I am just starting an Instagram page which is in its infancy but I would love for you to follow me on there as well, my user name is abi_wordpress_massey



New Years Reflection – Gratitude, Apologies & Change!


Hi everyone! A happy New Year to all of you! Today, I am going to be keeping this post brief, more as a quick update on what is happening at my end and what you can expect from the blog in the coming year. First though, I wanted to thank any of you who have been regularly reading this blog over the past four to five months. This is the first time I have kept a blog and it has certainly been an adventure for me. The amount of readers, the positive feedback I have received and the general success of the blog has been overwhelming, so thanks very much and I hope I can keep producing content that you will find engaging. I have also had the pleasure of meeting some wonderful and inspiring people through my blogging and online activity that has meant I have learnt a lot from others who have experienced similar things to me and made a few friends in the process.

Also, I would like to thank Julia at Headway Worcestershire  who has provided another blogging opportunity for me on their website. Over the last year her and the team have been extremely accommodating and made the process of working with them very easy so thanks to them for that.

As a final word, I would like to say thanks to my family who have helped to support my ambitions of becoming a writer, who have encouraged me with my blogging, congratulated me and celebrated with me on my successes, put up with me when I was being a pain and gave me a kick up the bum when I was being lazy. All of these things are a vital component to my writing process so thank you to them for that.


However, as well as the gratitude I needed to send out to all of you who have helped to make 2015 a successful year, there is also a need to apologise or at least explain a few things. I feel that I may have inadvertently taken this blog in a direction I did not mean to. I realise, looking back on my posts from last year, that I had a tendency to spend most of my posts highlighting the problems of living with a brain injury. That is all well and good, to succeed in recovery people need to know what they will be up against. However, what I remembered (I blame the brain injury for making me forget) is that you already know the type of thing I am up against because you or a loved one is experiencing it to. While I still intend to highlight the struggles that I am living with and provide you with the benefit of my experience of living with a Traumatic Brain Injury, I will be doing my best to try and find ways, give suggestions or ideas that will help to resolve those problems or improve situations more than I have been doing. This is an area where I feel I have been letting you down somewhat so I will be doing my best to improve on that note.

Finally, I will also be trying to write the post in a less academic tone and be slightly more relaxed, more myself. My intention was to write the blog from my perspective and in my voice to make the daunting subject of brain injuries less daunting for people to approach. Again, I don’t believe I have been doing that so I will be doing my utmost to change it post haste.

Changes To The Current System

Finally, I also need to announce a few changes that will be happening with regards to the blog for the coming year. Having done the blog since the end of August, I have come to realise that it is a medium that can eat a lot of content. I also find myself struggling to keep up in terms of providing updates twice a week, simply due to the work involved combined with other commitments and projects I am working on. As a result I will be reducing the weekly updates to just once a week on a Thursday to ensure I continue to provide good content to you, the readers. This also allows me to branch out and spend time on other projects that have been on the shelf for a while without burning myself out.

In Conclusion…

So there we have it. That is going to be the new set up for the year. I hope that you can understand why I have chosen to make these changes. I do believe that they will be of benefit to you, the readers and also for myself. I also hope I will continue to have your support for 2016 in the same, magnificent way I had it for 2015 so we can make this year as successful as the last, for both you and me. Happy New Year and follow me on twitter @ABIblogger for reminders and updates on my blogging activities. Or better yet, follow me on WordPress!

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!

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!

Rewiring The Brain (Part 2)

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. On the last post, I spent time stressing the importance of setting goals throughout an ABI recovery. Whether those are simple, short term goals or a more long term, complex goal, they both play an important role in building confidence within us (the patients), it allows you (the carer) to be able to see tangible progress and gives us both the incentive to keep going in what is an adverse situation. Finally, perhaps most importantly, stimulating the brain contributes significantly to establishing and building new pathways to avoid the old damaged ones that don’t work so well anymore, and improving cognitive functions. I believe that there were some things that perhaps I didn’t cover as well as I could have when talking about rewiring the brain, in particular, specific examples of what I did to aid the rewiring process. So I will dive into this a little deeper today.

Assess The Situation

In the last post, I’m unsure whether I made it clear, the idea of goal setting is important, however it should not be undertaken immediately upon the patients return. There is a period of time where both carer and patient should spend time assessing their position, what are your targets? What do you want? What do you need? These questions need to be asked and answers firmly established, between both parties, before any goals are set. Both patient and carer need to be on the same wavelength to ensure they are both working towards the same thing. If there is a miscommunication as to what the desired outcome is, it only has the potential to cause problems in your relationship.

The concept of taking your time for things to happen is something I worked out early. In my opinion, the sooner people directly involved in situations regarding head injuries grasp this concept the smoother things will go. Time is not necessarily the enemy either. When the patient arrives home, I believe that a period of time, allowing them to test their strength (in terms of their brain power: what they can/can’t do, where they struggle, what is still strong, what causes them distress) are all key things to learn when you are aiding an ABI recovery.

It becomes even more important to emphasise the importance of taking time in the recovery process when you deeply consider the idea of brain cells and synapses repairing themselves. I’ve tried to think of an appropriate analogy and this is the best I could come up with; think of an old battered road that has been damaged. So the local council decides to build a new road, a bypass so that the battered road doesn’t have to be used. Building that bypass will take time, effort and resources. As is the case when aiming your anger at public services, it doesn’t matter how angry you get, how much you complain or how much of inconvenience it is, it will only get done in its own time and all the complaining in the world wont make a difference. The repair process of cells multiplying and attaching to the right places and making the right connections is a long and tiresome process (believe me!), you can shout and scream at the process but it wont proceed any faster as a result. Everyone is entitled to moments of despair, anger self-loathing and self pity, I’ve certainly had those moments, but it can get better. You just have to be persistent, patient and determined.

Play to Strengths and Weaknesses

All of the above information is intended to help you tailor a recovery to the patients needs. This was the method our family used: learn my strengths and weaknesses and tailor the recovery to them. This section of today’s upload will give you a few for-instances that have significantly contributed to progress in my recovery. Once you know what causes a patient distress, you can avoid situations that directly involve that cause. An example from my experience; I suffered greatly from anxiety when it came to crowds, and loud noises. As a result my parents did all they could to avoid this environment when I was out with them.

Learning this kind of information will allow you to tailor a patient’s environment, activities and daily routine in a way that will ultimately benefit them. In particular, identifying activities where a patient is strong and tailoring the recovery around those strengths can ultimately help them rewire their brain and strengthen the aspects where they are not strong, build these new roads. An example for you; when I left to go to university, even after a year of trying, I was still having a great deal of trouble with reading. While I recognized the words that were on the page, the problem I was having was with the thinking that was required in imagining the pictures that the words created, so in essence, using my brain for two simultaneous activities. The way that I overcame this obstacle was by reading comic books. A friend of mine gave me a copy of Watchmen (by Alan Moore). Being presented with a visual representation of the characters and only having to deal with dialogue in speech bubbles allowed me to strengthen, not necessarily my reading ability in the strictest sense, but strengthened my brain in the way a body builder lifts weights in a gym. As time went on, I regained my ability to read (and also obtained a love for the medium of comic books and graphic novels).

I also would say that the success I had in further education was partly down to attending a course that suited my situation regarding my cognitive abilities. My degree course was 100% coursework based with no exams. Following the improvement I had seen in my reading after the discovery of comic books, reading and writing weren’t too much of a problem. It was committing things to memory that was (and still is) a problem. The course I did, was all essays or creative work which, again, allowed me to work my brain; build up some strength again and endurance. By the time I progressed into the second year of my course, my brain had been tested significantly and strengthened by those tests.

If there Is one thing I would take from my own experiences regarding the rewiring of the brain, it would be that the brain is a muscle, use it! I realise that this is something of a cliché but it is the best I could come up with. The more you work the brain, at the same time ensuring you do not neglect the essentials such as plenty of rest, good diet and exercise, the stronger you physically, and the brain cognitively, will get over time. It was only when I went back for the second year of university (something that had to be very thoroughly discussed and assessed to see if it was a sensible thing for me at the time) could I say that I felt as though things were improving for me, and that about two years. It does take time, but ambitions are achievable and progress can be made.

Thank you for reading. Please follow me on WordPress to keep up to date with my blog work. Also for anyone wanting to, I am on Twitter and accessible on there, my name is @ABIblogger, and I do my best to respond to those who make the effort to get in touch. Thanks again for reading, keep going and stay strong!

Rewiring The Brain…

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury.

The last update, as well as the next few, will be devoted to the importance of having a strategy, a game plan, and things to aim at throughout an ABI recovery. Having targets to aim for, throughout the time I was sidelined by my injury only increased my determination that I was not going to allow the injury to define my future. Even if the targets do not seem that big, the little victories should not be underestimated. Those little wins give us encouragement and hope and give us the determination to carry on fighting what is a very difficult battle to have to fight, day-in day-out.

Start Small

As I said in my introduction, little wins are important. After a brain injury, we as patients are coming to terms with a new sense of self; there are things that do not work the same way anymore, things we can no longer do, things we don’t understand the same way anymore to name just a few. These huge changes in the way a mind works can, and trust me I’ve been there, be devastating to ones confidence and self esteem. You start to believe that you are stupid and that the changes are the effect of something you have done wrong, a mistake you have made. The worst thing that could happen to an ABI patient is for them to just give up on themselves and on life in general.

The key to avoiding this would be to slowly build their confidence again. Attempt small achievable tasks that can be worked towards. The saying “Rome wasn’t built in a day” could not be more relevant here. While certain pathways have no doubt been damaged or even destroyed by the injury, the brain is an incredible thing; it attempts to create new pathways to try and counter the damage that has been done (according to what I have been told anyway). In a metaphorical sense, over the years that follow an ABI, the brain will be in a process of attempting to rewire itself, so it can be used to its maximum capacity. A good example based on my experience was an issue with balance. Shortly after leaving hospital, it became clear that maintaining my balance while walking was clearly something I was having trouble with. So this became one of my first challenges: make sure I can get around the house properly. So not long after leaving hospital, the only way I could get up and down the stairs in my house was for my Dad to be stood in front of me, with me holding onto his shoulders to keep my balance. As time went on, we went a step further with me holding onto the bannister with one hand while my Dad supported me around the waist. Then, after that, it was for me to walk down the stairs holding onto both of the bannisters, with my dad a step beneath me, ready to catch me if I fell (hopefully). I then had to go down the stairs just using one bannister, with my dad still below me ready to catch me (even more hopefully!). Finally, It was time to attempt walking down the stairs unsupported, with my family waiting at the bottom (expecting me to crash and burn, no doubt).

I didn’t crash and burn though. It had taken me a month to get to the stage where I only had to use the bannister. I know that the process was very slow, but when I finally achieved my goal, walking up and down the stairs unaided (and without having to take ten minutes to process the method) the feeling of it was fantastic. I was so proud to have achieved, what any normal person would’ve called, an easy feat. It was those kind of moments and expanding on those little victories that allowed me to build up the confidence to think up an overall game plan, a long-term goal.

Keep A Long Term Goal In Mind

This is the difficulty of recovering from an ABI. You can never stay static. Or at least, that’s what we found. Maybe I should rephrase that, it’s INADVISABLE to stay static. Each day, we found that there was a way for me to be stimulated in some way; whether that was simply by watching a film and trying to follow the plot and character lines, or by trying to do something as simple as boil an egg and make a cup of tea for breakfast. All of these things were contributing to rewiring those damaged pathways I spoke about in the first section.

However, what I found throughout my recovery was that it was also important to have an, overall, larger goal, something that those little victories were moving towards. The reason I believe that this part of the recovery (laying out a long term goal) was key, was because it made those little victories all the more significant because they were moving towards something bigger, it gave those little victories all the more importance, and finally it gave me a hugely increased incentive to achieve those little victories.

My goal, was a very large one, to be deemed fit by my neurologist to go to university (what I was due to be doing anyway if it hadn’t been for the bloody injury!). I realise that this goal may not be suitable for all of you reading this, however it purely depends on the situation. It requires some serious assessment of both what the patient wants and needs and finding an appropriate target that will meet those requirements. The key is finding the balance to make the target achievable. I dread to think what my state of mind and my moral would’ve been had my doctor told me that I could not go to university. That is the danger you are faced with when selecting that long-term target: if the result is failure, it will be hugely demoralizing to the patient. I cannot tell you anything else because it would be a lie and my aim in this blog is to give you the uncensored truth of life after an ABI, and this is one of those truths.

If, however, you can find the right target and the patient achieves it, the positives and benefits can be overwhelming. When I went to university, it made my brain work as I had to live independently (cook my own meals, get to class on time, wash my clothes), as well as this it stimulated my brain from an academic standpoint, improved my social skills and improved my mental stamina. In my opinion, my brain was forced to rewire itself quicker due to an adapt or perish type mentality I had to adopt. Had I not been able to attend university, my life would have gone down a drastically different route.

(N.B. A massive thank you to Southampton Solent University and in particular, Access Solent. Access Solent provided me with all the support required for disabled students to succeed in terms of accommodation, note-takers, recording equipment, and regular academic mentoring sessions to ensure I was on task, as well as counseling sessions to help me with my emotional problems while I attended. So to say I did it on my own would be lie, without my family and Access Solent I would not have achieved any of the things I did. There are people out there who want to help you. It is merely a case of doing your research, approaching the right people and not taking no for an answer!)

Thanks for reading! I hope you have either enjoyed this chapter of my story or gained something constructive from it. If you want to hear more of my story then follow me here on WordPress or I am also available on Twitter, my handle is @ABIblogger. Thanks everyone and keep going!

The last of the pseudo-science…

My Name is Tom and I am the survivor of an ABI.

In the last post, I covered the injuries to the brain that I suffered (as I understand them in layman’s terms). In this post, I will be looking at the different sections of the brain, what they do (again, as I understand it), and that will lead us on to the next few weeks where I will discuss the problems I had when waking from my induced coma. Trust me, I am doing my best to get away from the medical stuff, the neurology, and move quickly on to my experiences and the real meat of this blog.

From the research I did through my medical notes, it seems that most of the damage was done to the temporal lobe, the occipital lobe, and some minor damage to the frontal lobes (and I’m sure other places suffered some minor damage due to the midline shift/increased ICP). Now, finding out the function of the different parts (or lobes) of the brain has been interesting to me as it has allowed me to put the after effects I still suffer from in some kind of context. I had done little to no research prior to this blog on what effect the damage to different parts of my brain has had on me. It is much easier to not address it: to live in denial of something is a lot easier than accepting it and taking steps to address and overcome it. After all, it is only really in the last year to eighteen months where I have started to truly accept my ABI and what it has done to me.

Now, the different lobes of the brain and what they do. This is how I understand it and the picture below should give some clarity on the locations of the different lobes.

Colour coded and labelled picture indicating the different lobes of the human brain.
Colour coded and labelled picture indicating the different lobes of the human brain.

The main section of the brain is called the cerebrum and provides the tools for thinking that we use in every day life. It is divided into right and left hemispheres: The left hemisphere is responsible for the logical side of thinking, numbers, words, lists, logic, sequence, linearity etc. and controls the right side of your body. Whereas the right hemisphere controls the left side of your body and is responsible for the more creative endeavors such as rhythm, spatial awareness, colour, imagination and daydreaming. The cerebrum is then split into four different lobes, each of which has a different function.

  1. The Frontal Lobe – The frontal lobe controls so many different aspects of what we do and what our brain does. To include just a few, it controls creative thought, problem solving, intellect, judgement, behaviour, attention, physical reactions, muscle movements, smell and personality.
  2. The Parietal Lobe – The Parietal Lobe mainly focuses on comprehension, monitoring things such as language, reading, visual functions, internal stimuli and sensory comprehension. It is also home to the Sensory Cortex and the Motor Cortex. The Sensory Cortex receives information from the spinal cord regarding the position of our many body parts and how we are moving those body parts. The Motor Cortex helps to check and control the movement of the body.
  3. The Temporal Lobe – The Temporal Lobe controls our visual and audio memories. Located here are sections that help us with speech and language as well as hearing. It also has an effect on some of our behavioural factors. The Temporal Lobe also houses Wernicke’s Area. Little is known about this area by even the best doctors but it is known to help us formulate/understand speech.
  4. The Occipital Lobe – located at the back of the head, it helps to control vision. The Occipital Lobe also houses Broca’s Area, the area of the brain that controls the facial neurons as well as our understanding of speech and language.

So theses are the four main lobes of the brain. I promise you, that that should be that on the science jargon. But I felt it to be important to include some of the scientific/neurology stuff as it places my future experiences in a proper context. So I hope to see you here again. Would love it if I could get a few more followers on Twitter (follow me @ABIblogger) and maybe follow my blog while you’re here. I assure you I am doing this with the main aim of helping people. Any feedback I can get would be amazing! Thank you so much everyone. Stay strong!