Where Am I Now?

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

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

My Brain Injury

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

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

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

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

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

Home Life

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

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

Work Life

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

Social Life

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

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

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

Conclusion

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

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A New Year – Self-Assessment

Well, as I said in my final Monday post, I would be hoping to make some changes to the writing style of the blog to make it more digestible for you, the readers. So here it is, me not trying to be academic, but simply speaking from the heart and also from the mind on my experiences of suffering from an Acquired Brain Injury and how that affects me as I try to pursue goals from the (seemingly) simplest (remembering chores), to the more difficult (finding and keeping long-term employment).

A Brief Introduction – An Optimistic Outlook On The New Year

I have entered 2016 in a very positive frame of mind. There are lots of things I am enjoying (the blog), lots of things I am looking forward to (the start of other writing projects that have been on the shelf for quite a while if I’m honest) and also the knowledge that I am moving forward in the ongoing process of recovery (something that is a never ending process, in my opinion). I have an idea of where these roads are going to take me, the problem with life, as a whole is that a lot of the time things happen, opportunities and chances come up when you least expect them.

The thing is though, that I am one of those people that need a plan. That is what gives me the motivation to carry on every day when, as a lot of you know, some days you really don’t want to. So I have a set of ideas and goals, basically a rough plan of what I want to achieve in the upcoming year. It is my intention to share with you exactly what it is I am doing to achieve those aims and the obstacles my brain injury throws at me as I go. I will also share with you the equally important issue of the different methods I am using to try and overcome the consequences of my ABI (I will be trying some different stuff so stay tuned because it could get interesting).

The Nature Of Self-Assessment

Analyzing ones self can be a difficult thing to do for anyone, regardless of whether you have had a brain injury or not. It requires total and sometimes brutal honesty as well as time, taking the time to ensure we really look at ourselves. When we engage with this process it can be extremely disconcerting. As I say that is not just for those of us with a brain injury that is for all of us.

Whoever we are, when we really take the time to look at ourselves, we will always find something that perhaps we must acknowledge about ourselves, something new we didn’t know before, something we don’t like and wish we could change. However, the type of self-assessment I want to discuss is the type where we can glean positive results. This is where I get more specific and focus on engaging with this process with a brain injury.

Assessing Yourself After A Brain Injury

Really looking at yourself and analyzing who you are post-ABI can be a really horrible experience. This process means truly seeing who you are now. It is about recognizing the losses you have suffered, the difficulties you have, the things you cannot do anymore and putting the emotional reactions that are triggered as a result to one side. Accepting your disability and its limitations is the key to moving forward.

That may seem like cheap words coming from the outside but it is true. In previous posts, particularly ones that I made last year, I tried to place an emphasis on the fact that life shouldn’t stop for us because we have suffered something as terrible as a brain injury. While this is absolutely true, it also must be stated that the world outside does not stop for us because we have suffered a brain injury.

Identifying Key Moments For What They Are

Don’t get me wrong, it took time for me to get to a stage where I was ready to really look at myself and accept the changes that I had undergone (around four and a half years to be exact). It is a process that does take time and a process that will be undertaken at the convenience and length of time the patient sees fit. It is a process that certainly should not be rushed. To be honest, it does not happen in a single moment of clarity (or at least it didn’t for me). After a certain amount of time I just get tired of fighting the same uphill battles that I had been fighting for so long that eventually, you just have to say “No. I am not going to put myself through this again.” And you don’t. It is strange but there are a series of moments that ultimately prove things that you have known about yourself (as an ABI patient) all along, you just weren’t willing to accept them. You were happy to keep swimming against the tide (that’s how it was for me anyway). The key is to recognize those moments for what they are: moments that will inform the way you live the rest of your life.

As A Result…

When these moments occur, when we accept these limitations we are then, believe it or not, in something of an advantageous position. We can then avoid spending our time banging our head against the wall working towards goals that are made difficult because of the consequences of the injury. Instead we can spend time working towards goals that use the strengths that remain within us post-ABI (and don’t say you don’t have any because you do) while devising strategies to compensate fro the weaknesses we have.

Sooner or later we will have to look at ourselves, assess where we are struggling, what the real consequences of the injury have been, finally and most importantly, how can we work to improve our situation, improve how our brain function and find ways to compensate for our deficiencies that work for us as individuals. The sooner we can identify and come to terms with our own issues, the sooner we can find ways to seek improvement and move toward the goal of long-term improvement.

 

Thanks for reading. I hope the changes I have made have been acceptable to you. Feel free to leave any feedback on the comments section or if you want to get in touch follow me on Twitter. I’m @ABIblogger or follow me here on WordPress. Thanks again!

Believe In Yourself!

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. I have spoken a lot on the subject of confidence throughout my blog. And today I will be talking about the importance of self-belief during recovery. In this post I am not talking about self-belief in terms of approaching individual challenges (that is what I consider to be confidence as opposed to self belief, two important things to differentiate between), but believing in ones self throughout the entire recovery process. It will be about believing that the road you’re going down is going to take you to your required destination. All of the things I will be talking about below will contribute to that sense of self-belief and hopefully empower you to create a mindset that will enable you to really get out there and achieve the things you want out of life.

Life & Determination

There will be times (in fact, I think it has already been proven or else I doubt you would be reading my blog) that life is going to kick you whether you are up or down. That is the problem with life in general, when it kicks out, it does so in a way that is indiscriminate, unfair and  hard. What we have to take from this is that when we are knocked to the ground, we have to learn to get up and keep going forward. Unfortunately, I think as people who suffer from the type of disability we do, we have to acknowledge that the fights we face in life will hit out at us harder than they would other people.

In these small scuffles with life, the temporary setbacks and minor defeats that will inevitably occur cannot deter us from the long-standing, long-term goals we have set ourselves. The hard lesson to learn is being able to get back up and keep moving forward without the setback of life affecting your positive outlook. In other words, disabled persons such as ourselves need to acquire a determination that will, trust me on this, set us up very well for the future.

We have to believe that we are capable of achieving more than others assume. When you are suffering from a life changing disability, as I have stated previously that creates a certain set of expectations and connotations in the minds of not just our bosses and educators but in the minds of Joe & Jane public as well. It is not deliberate or vindictive; it is merely a consequence of the society we live in. This ingrained mindset unfortunately can create an unknown prejudice against the disabled: what we can achieve and how far we can go can sometimes inadvertently be defined by the necessity for a wheelchair or a surgery scar and how those things are read by other people.

We must, all of us, set about trying not to allow a disability, whether visible or invisible, and societies connotation disability itself, to define how capable, intelligent and talented we all are.

This is where the necessity of that determination comes in. A determination not to be defined by something beyond our control and the determination to live the same lives filled with excitement, adventure and passion that we deserve as much as any fully abled person does. The only way we can go about disproving the false ideas and breaking the stigma that is attached to disability is to not be afraid to commit to situations, to try new things and work damn hard while we do it. Finally, if we take this attitude and this approach, when something does not work out as well as we had hoped or we do not succeed in something, we will know we have given it our best. When we know that we know this about ourselves, that we have given our all, complete failure is impossible there is always a positive to be taken away from the situation. Even when we have given 100% in a job, especially if it does not have the outcome we had hoped for, it inspires me and makes me more determined that in the next thing I try, I will do my absolute best once again and be determined to make the next one work.

Passion

Whatever it is we do in life, education, a particular career or a hobby, it will hopefully be something that we’re passionate about and that we love. Things that are done and driven by passion are much more likely to succeed. When you are young, it can be very difficult to decide where your future lies in terms of employment or education, what path it is you want to take. Trust me when I say that when you find something that you do love or that you want to do, your passion for that thing will help you to keep going even on days where you really don’t fell like doing anything (days we all have), if you see what I mean?

In my opinion, passion and determination are very closely linked, if I may give an example from my own life. My desire to be a writer is one that I have nursed since childhood. However, because of my ABI, it means I cannot achieve that through conventional methods (work experience, internships, voluntary work etc.). As such, if I want to achieve my goal I will have to do it from a freelance/self-employed angle. This means that every single day, regardless of how I feel on that particular day when maybe I can’t be bothered, I have to write. That is how amateur writers become professionals; they write every day. Now, this is where the two emotions seem to meet. Once I have actually started the process of writing each day, any feeling of resentment towards what I have to do goes away. This is purely because I love to write, really (even on days where I say I can’t be bothered). It further enhances my determination to do it for a living and only boosts my belief that I have the ability to do it for a living.

I am a firm believer that when we do things with a passion and for the right reasons we have a much higher chance of succeeding in those endeavours. So if I could give advice to anyone, it would be to pursue your passions and to help other people pursue theirs, because doing these things will provide you with a sense of happiness and fulfillment that will help to drive you forward and keep you determined which should help to get you through some of the tough times ahead.

Support

This may seem like an obvious one and one I have mentioned a fair few times in previous posts so I’ll keep it short but I also believe it to be of vital importance. It is truly important to have a trustworthy supporting cast whom you can rely on for help, support and for words of comfort. After suffering from something as devastating as a brain injury, I quickly found out who my true friends were and I have been lucky enough to keep a small, close-knit group of friends around me upon whom I can always rely. As well as the small group of friends, I have been lucky enough to be blessed with a family who has supported me, over six years, through thick and thin. I could not have asked for more from any of these people who’ve contributed to helping me during my recovery. They have all, in one way or another, at some point provided me with the help I needed when I needed it. Over the years, their kind words have directly contributed to building my confidence into a permanent sense of self-belief. Never under estimate the effect those closest to you can have on your recovery.

In Conclusion…

These are just a few of factors they contribute to building that sense of self belief, that desire to defy the odds, to defy social convention and not to allow a moment of misfortune to define our future.

The overall point I have tried to make though, of the three factors that I thought significant enough to talk about, you may have noticed that two of them were emotional factors. What I am trying to say is that I believe that much of the success we can achieve comes from something deep within us, some internal element (that I can’t quite place a name on; maybe it’s the spirit? or the soul?) combined with the love and support of family and a few select friends. The combination of all of these things, for me, means that all the things you dreamt of before your injury and that you dream of today are still possibilities as you move forward.

Communication Between Parties

In my last post regarding the International Day of Peoples with Disabilities, I was trying to make it clear that for anyone who doesn’t struggle with the same type of lifelong condition such as an ABI, in other words are fully able, it must be extremely difficult to find the right way to communicate with us, the disabled. In the same post, I went on to say that those who have not experienced the type of life changing adjustment that comes with acquiring a disability, must have an impossible job in terms of trying to understand the experiences we go through and have been through as they have not experienced this type of monumental change.

I have considered these two points over the last week and as such the final carriage in my train of thought is this: if we, brain injury patients, are suffering with problems, fears and issues that our fully abled friends and family members cannot possibly hope to understand, how do we expect to be able to communicate and engage with them in a way where we treated with respect, courtesy and dignity?

Communication & Staying Informed

The biggest problem that is undoubtedly a cause of of the issues regarding communication, especially in the home environment, comes from the nature of brain injuries themselves, in that they are something of an unknown entity. Having spoken to my parents and other family members, they tell me that after I had my surgery and had been placed in an induced coma, they did not know how much of the old they would be getting back if and when I regained consciousness. Until that time they had had no experience in dealing with such a situation and were unaware of the potential consequences I could suffer from.

The effects of a brain injury are so varied, far-reaching, and surprising. So much so, that quite often, even the specialist doctors who treat patients are unwilling to commit themselves in terms of predicting any kind of potential recovery. Any kind of rehabilitation that is laid out comes in the form of a reactive approach, a type of “let’s wait and see” methodology.

When I was discharged from hospital after my injury, my parents had spent much of their time at the facility being informed of the impressive progress I had been making. My family was incredibly optimistic in terms of the feedback they had received from staff members who told them of positive signs I was showing and what that that would mean for my recovery. My family genuinely believed that when I returned home, after a period of months, I would be my regular self again and that the injury would have no real long lasting effect.

It did seem as though, upon my release from hospital, there was a significant breakdown in communication between the doctors and my family. During the discharge meeting my parents were informed about the significant physical problems that definitely would affect me in the future: permanent deafness and tinnitus in my left ear, losing my sense of taste and smell, as well as a residual squint and diplopia in my left eye. However, all issues regarding memory, cognitive processes, thought processes and speed of brain function were barely mentioned. It was not until a year after I left the hospital my parents were even made aware of the extent of the skull fracture I suffered, when my father asked to see a copy of my head x-ray.

Left In The Dark

This breakdown in communication regarding my actual brain function had a very large effect on the way that I engaged with my parents at home. This was mostly because of the fact that when I returned home, my parents believe that it was merely a matter of time before I returned to my old self. As such, my parents encouraged me to do different things in terms of trying to get out and about, trying to challenge me, perhaps in ways that were more than I could handle at the time. After a while it became clear that these tasks were too much for me to handle. If you were to place me in the context of a fully abled person, particularly emotionally, the way I reacted to small failures were hugely over-emotional. I was getting frustrated that I could not do things that had previously come naturally to me and I was also struggling to come to terms with the physical handicaps regarding my senses (in particular the issues with my sight).

After a few months, it became more apparent to my parents that leaving the house and going out in public would be more of an issue than they had anticipated. Even though my memory of the year following my injury is not the best, I certainly remember that when we did go out both my mum and dad had a tendency to be more controlling and overbearing than they were previously. Something my mother confesses to still having a habit of doing when we are out together now. This over protective nature can become frustrating and feel very patronizing, particularly in the immediate aftermath of a brain injury when you are still becoming accustomed to a new way of life and new limitations that have been placed upon you and you have not come to terms with those changes yet.

What we must remember, if you feel you are being treated in that way, the people who doing it are certainly not intending to patronize you. It does come from a place of genuine concern and love. The best way to solve this problem is to try your best to communicate with that person and tell them exactly how you feel.

The Memory Of The Old You

One of the things I would also consider a contributing factor to the change in the way you are treated is the inevitable change within you that comes with a brain injury. Before a brain injury, we were living normal lives, going to work, going to school and socializing with friends in our spare time. The people we have engaged with while we have been doing all of these everyday things have created an image, an expectation of who we are and how we should behave.

As a result of the brain injury we suffered, our ability to do certain things, to behave in a certain way, essentially our ability to live up to the expectation we have created in our previous life as a fully abled person has been removed. This change unfortunately makes people extremely uncomfortable, nervous and highlights their insecurities and lack of knowledge.

These people are aware of our situation, they remember the person that they had known previously and they also know that this person will have undergone a change in the way that they act and the way that they function. Most ordinary people actually, aside from the severity of the situation regarding an ABI, know very little about brain injuries and what suffering a brain injury actually means. Because of the severity that associated with ABI’s, people feel that they need to treat patients differently after the injury than they did before it because they are now different people.

In reality, what brain injury patients need is for people to acknowledge that they have suffered a life-changing trauma and for people to just be a little more patient with them and to accept that they are facing challenges every single day that they have never faced before. What we do not need is to be patronized, belittled or defined by our injury. What we want is to be treated in the same way we have been previously, for who we are as people.

Communication Between Parties

I can only say that after your injury, if you feeling patronized, treated like a child or undermined, the only way to address those issues is to calmly and carefully talk to and communicate your feelings with the people you feel are treating you this way. I can honestly say that if you get your point across to them in a way that they understand and that they can relate to, the vast majority of people will do their best to adjust their behaviour and think a little more carefully about what they are saying and how their words can be interpreted.

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!

 

 

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!

Our Approach…

My name is Tom, I am 25 years old and I am the survivor of an Acquired Brain Injury. Getting settled in at home is an important part of leaving hospital after suffering a brain injury. As I said in the last post, comfort, consistency in the environment the patient is in plays a vital part to any recovery attempt that is being made. However, there are different approaches to the recovery and each different approach has its own positives and negatives. I am going to talk through some of the approaches I went through in the hope you will see what could be gained from it.

The “Military” Approach

I will start off by talking about what it was we chose to avoid. After a brain injury, a patient will most likely be suffering from impaired cognitive function. There are different ways to approach this and one of those ways is to have repetitive, regimented, practice over and over, until those cognitive functions return to (not full which is nearly impossible after a severe brain injury) an improved capacity.

After my parents did some research, we chose to avoid the strict, regimented, routine. They found that many of the patients suffered greatly both in terms of their self-confidence: due to a continued attempt to do something that they simply could not do any more. It is bad enough to realise that you can not do certain things you used to be able to do perfectly well, but it must be even worse to be forced to attempt that thing over and over again even though you can’t do it. It must bring so much anger, sadness, frustration, not to mention resentment towards those that are trying to impose this “military-esque” (for lack of a better term) approach to trying to do something almost impossible: return a patient to the same state they were in pre-brain injury.

The second aspect where the regimented routine could cause difficulties was simply in the dynamic between carer and patient. Now this is definitely linked to the first issue and to comments I have made in earlier posts. It is crucial to maintain a good relationship between patient and carer. If the patient is under pressure and being forced to attempt things that are simply beyond them, they will begin to think that there is something they are doing wrong. It is essential that in the approach to the recovery, the carer should not necessarily understand (understanding a brain injury is pretty much impossible unless you have been through it) but empathise with the patient. It is critical that you do not make them feel as though it their fault, that you are angry or frustrated with them. For any carers out there, positive reinforcement and attempting to instill confidence in the patient as they approach, even, what may seem like a fairly routine activity is important to building up confidence so that they can move on to more ambitious tasks further down the road of recovery.

What We Did: Our ABI Recovery Approach

There were certain things that I had to do in my recovery for very specific and important reasons. I had to keep up with basic mental exercises (i.e. Sudoku puzzles, word searches, cross words, spot the difference etc.) to try and improve my cognitive function. I also had to do physical exercise as well, however I was slightly limited in this, as I had always enjoyed contact sports, which were then impossible due to my fragile skull (they are not impossible now but still have an element of risk to them). One of the things I really did do was eat. I ate a lot. I had lost 4 Stone (64 lb.’s) while in hospital so I needed to put some weight back on to make me a touch healthier.

These were certain things that I had to adhere to. However my parents had been doing their research on how to approach this kind of thing, we decided to go in the opposite direction of the type of the recovery mentioned on the first page of this entry. We decided to use a method of very basic routine. Times I got up, times I ate meals, times I would walk into town were all relatively routine and at specific times of the day. It was my spare time that was for me to decide. It was basically a way for me to use my spare time in a way that benefitted me most at that time, on that day. If I needed to sleep, I would sleep. If I needed a snack, I would have a snack. If I wanted to get out of the house, I would go out.

Having spoken to my parents about this though, I cannot truthfully tell you that this was some ingenious or innovative approach to tackling the aftermath of an ABI. It seems to me as though this approach was both as a result of not really being given that much information from Brain Injury Services where we lived, meaning we were left in the dark somewhat. I also have heard her say that this liberal approach to my recovery was something of an attempt to deny the truth. My mum has said to me that she thought when I came home from hospital everything would, after a while, go back to normal. To try and keep things going as normal seems to have been an attempt to deny the truth its inevitable victory. I think that there is, especially around where I live, a lack of support and assessment for carers (and brain injury services as a whole if you ask me!). I cannot say what those services are like in other areas of the country but here, we were somewhat left in the dark, to figure it out ourselves. I would be very surprised if it is not a similar case all over the country due to the enigmatic nature of ABI’s. It seems you can never really tell what will be permanent and what won’t, what will improve and what won’t, if you will be able to do certain things again or whether you won’t. So it may be that in approaching an ABI recovery for any carers out there, you may be left to fend for yourselves and figure out what is best for the patient. This can obviously work out well in some ways as you know the patient better than a doctor or a psychologist. It is about finding the balance; knowing when the doctor is telling you something that is very important that must be done, and even then, if there is a way you can approach that task that will ultimately suit the patient better than the way a doctor has suggested then try it your way as well. You need to be willing to think outside the box to get the best possible results for the patient.

If I were to be asked, “what is the best approach to a full recovery?” I would have to say that my answer would be that there is no full recovery, that’s how I would start anyway. What I would go on to say is that the path towards recovery is dependent on the individual; their strengths, weaknesses, likes, dislikes, their mental toughness and determination all play a significant part. The best approach would be to try and tailor the recovery towards the patient and what works for them. But one of the key aspects I would say to any carers out there would be to use your common sense and try to empathise with the patient as much as possible. Put yourself in the patients shoes, think of what they have lost, what they are coming to terms with, and what it would be like for your brain to be working fine one day, and then at ½ speed the next. The best advice I can give to any people looking after an ABI patient out there is to put yourself in their shoes and remember everything that happens along the way. Treat any difficulties or mistakes as a learning experience, not as a failure. Learn, adapt and adjust for the benefit of the patient.

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