Why We Shouldn’t Simplify ABI Recovery

This post is aimed more toward family members and those living in close contact with patients recovering from ABI’s and TBI’s. It links on quite nicely from the last post Only Lessons and was not a subject I had really thought of covering while I had been planning out my blog posts and yet here we are. Last week I spoke about the slightly less tangible aspects of brain injury recovery. These are areas that in some places, even after six and a half years when I think I have seen, felt and heard it all, still throw surprises my way. So after last week I thought very hard about what it was I had said to you and tried to add another carriage to that train of thought.

Something To Remember…

Unfortunately, much of this post has a “what not to do” kind of message. I know what some people reading this will be saying, and I completely agree with you, that “it is so hard to learn the best way to approach recovery and what to do when things become uncertain and when things don’t go right and its easy for him to sit here and type away telling people how to and how not to approach a type of recovery with so many variable factors”. If that is how this post comes across, I sincerely apologise but the truth is that, after discharge, families get very little outpatient support. It cannot be just my family and I that has seen and experienced the majority of outpatient services, for ABI patients and carers alike, and believe the majority of them to be a complete joke. So the reason I am writing this particular blog post is to try and help you bypass some of the lessons our family had to learn the hard way.

What Can Happen When We Don’t Properly Analyse The Outcomes Of Challenges During ABI Recovery?

If you happened to catch last weeks post and if you have been following me on Twitter, I spoke about not seeing and defining the outcomes of challenges as either success or failure, not to see things in that narrow, one dimensional frame of mind but try to look at the bigger picture of brain injury recovery particularly when a patient takes on a new challenge.

It is important to ask where were the strengths? Where were the weaknesses? What positives or negatives were there to take from the experience? Were there any external factors that may have affected the patient when they took on the challenge (distractions such as loud noises, crowded places, invasion of personal space)? The list of questions and factors that need to be considered when analysing the outcome of a challenge taken on by an ABI patient in recovery is huge. It is important that you think of it as huge as well because basically what happens when we don’t properly analyse and try to understand the outcomes of challenges faced by ABI patients, we think of it in simplistic terms and downgrade the severity of the condition, its long-term manifestations and consequences.

What Are The Sociological Outcomes Of This?

If we have simplified the consequences of something as complicated, devastating and life changing as a brain injury, it is inevitable that we will then simplify the outcomes of challenges an ABI patient faces down to naïve one-word definitions (as I mentioned in my previous post) such as “success” and “failure”, does it not follow the pattern that we will react in a simplistic way? It is likely, given preceding events, that reactions will be based off of emotions, or worse, based off of the abilities of non-disabled people (the reason I say that the latter is worse is due to the fact that none of us can keep our emotions in check 100% of the time). To react in a way where we compare outcomes to challenges based on the abilities of people with a disability to non-disabled people is discriminatory, plain and simple.

What Are The Emotional Outcomes Of This (For The Patient)?

To start off with, let me say that I am very fortunate to have the parents I have. Without them I would never have got through this period of my life where my world was turned upside down. They have never expected or asked for more than I could give. We have tried things and they have not gone to plan but never once was I blamed for any mishaps that have happened along the route of recovery. Any disagreements we have had or any time I have felt hard done by is when (as I mentioned earlier, emotions cannot always be kept in check).

If I may give an example, when I am suffering especially badly from fatigue my memory, speech and thought processing are particularly affected. It takes a long time for my thoughts to find the words I want, then for my brain to send them down to my mouth and for my mouth to sound out the words. My sentences become particularly disjointed and filled with lots of “err’s” and “umm’s” between words. When relaying a phone message during our recent house move, one of my parents lost their patience with me as my brain/speech was affecting my fatigue/anxiety and meant I was not delivering the message correctly. When this happened it made me feel extremely angry and a little hurt. It was only because it was one of my parents and the stressful context the disagreement occurred in that it didn’t affect me more deeply. It has happened on other occasions and when it first happened it was extremely hurtful.

 

What Can We Take From This?

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

Albert Einstein

I believe that the above quote says it all. When an ABI patient takes on a challenge there will always be positives and negatives to be taken from the outcome (next week I will focus more on the positive approach methods to recovery). More importantly, there are lessons to be learned that will inform our recovery for the future. It is important to remember this and ensure that we do not allow ourselves to try and simplify a complex matter into something trivial and permit thoughts, led by emotions, confusion and a fear of change to rule our reactionary processes throughout recovery.

We, as people, are all different. The key to finding a successful route through the minefield that is ABI recovery is to be as flexible and open minded as possible and find ways to approach recovery using the tools to hand and using tools that suit the abilities, emotional state, personality and goals of the patient.

Thanks for reading. I hope you have found my post interesting or useful. Follow me here on WordPress and join the mailing list to receive the post via email every week. To stay up to date with my other goings on, follow me on Twitter (my handle is @ABIblogger) or on Instagram where my user name is abi_wordpress_massey.

 

 

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Only Lessons

Since the New Year, the majority of my posts have been focused on the life changes we have had to accept as people with a disability. The main message of those posts, Health, Independence, Employment and Taking Control Of Our Lives Back (a message I’m hoping I managed to get across accurately and clearly) was that we should not settle for less in terms of our expectations of life. The other thing I was trying to communicate was that once we get to a certain point, i.e. when we have acknowledged our disability for what it is, a disability that makes things harder for us in life, then we have reached a milestone. At this point we can really take off into different and, in some cases, slightly less tangible areas that really are about your own state of mind, the type of person you are and adopting a certain mentality regarding Acquired Brain Injury.

This post is predominantly going to be about positivity, negativity, how you see yourself and the way you judge certain situations and their outcomes (that’s what I meant by those slightly less tangible aspects of brain injury). Really, those thought processes are what can determine the degree of success that an ABI patient has in their recovery. After all, we are all individuals and we are all different and it is for that reason that I see this post as particularly important. I hope you will see what I mean by the end of it.

Failure

  • FAILURE (noun) – failing, non-performance, lack of success, an unsuccessful person or thing.

Failure is a horrible and ugly word. The English Dictionary defined this word with negativity etched into that definition (which can be seen above) in all of its meanings. Taken at face value, if we were to interpret meaning purely in the academic sense and how the dictionary defines it, there is no way in which this word can be used which has any positive connotations.

For you now, as a patient, carer, family member, get yourself into a state of mind where this word no longer exists. Erase it from your vocabulary if you are in any way involved with an ABI recovery. This ugly word’s use is one that should be carefully considered taking into account the dictionary definition I have provided above, when you are dealing with anyone, let alone someone who is going to be as emotionally sensitive as a person recovering from an ABI.

So what word do we use when the inevitable setbacks that will most certainly occur rear their ugly heads? Well, what we do is we think about things in context and we most certainly do not give the outcomes of a challenges a simple a one-word definition.

Engaging With Things & Testing Ourselves

After we suffer something as traumatic and life changing as an ABI, we cannot shut ourselves away from the world. We must be brave and throw caution to the wind in trying certain things and conquering new challenges. Of course this is, again, within context. I’m not saying we should try and climb Mount Kilimanjaro, but when opportunities and challenges that we see as manageable present themselves then we shouldn’t be afraid to try them. It is all about perception and how we scale the size of the task in front of us. Weigh up the potential positive outcomes against the potential negative outcomes in line with the situation of the patient. If you feel that the overall potential benefits outweigh the potential negatives, then give it a try (if you are a patient reading this, perhaps with the help and advice of an advocate or carer). Not only does this ensure that we are out, engaging with the world but it also allows us to test our strength; find out where we are weak and where we are strong and areas where we should be focussing in terms of trying to improve.

Secondly, one of the key things I have learnt over quite a long period of time after my ABI was that recovery progression (progression is the key word there, that is what we all want for ourselves and our loved ones, progression in life) was essentially an elongated process of trial and error. Trying different things, new things and even old things that seemed unfamiliar to me post-ABI. Trust me when I say this, sometimes I came back from outings on the verge of tears because I couldn’t handle the task I had tackled and I was tired, frustrated and angry. Sometimes I had mini emotional breakdowns in public because someone had barged into me and invaded my personal space or the amount of stimulation I was getting from being in a loud, crowded street was too much. Sometimes I wanted to give up. But I didn’t.

When my parents and I realized that certain situations and tasks were too much for me to handle, we tackled something smaller. If that didn’t work out we reduced the size of the task further still until we found something manageable. Even if the task to stimulate a patient is something as simple as going to a park with a parent or carer and feeding the ducks, it is a task that the patient can do, in a relaxed atmosphere that they can enjoy. It is then a case of, when the patient is ready, moving up to something slightly bigger, something more challenging and see how they get on with that. I would also add at this point, don’t progress too fast. Communicate regularly on whether they still enjoy whatever simple task has been chosen. Or, even wait for them to ask you for a change.

No Failure, Only Lessons

I guess what I am trying to say here is that there is a steep learning curve when it comes to recovery post-ABI for patients, parents and carers alike. You musn’t be afraid of trying new things and gradually challenging yourself more and more as the road to recovery goes on. When setbacks occur for a patient tackling a challenge, do not define the outcome of it in one-dimensional terms of success vs. failure. Try to see it as a lesson learned and know that, for now at least, that challenge is too much. Take a step back, look at something smaller. Or, you may have found an area where a patient is managing quite well, a huge positive that you can jot down when planning the progression of the recovery, you now know an area where he or she is capable, that you can build from. Either way, do not judge any experience as a success or a failure but as a lesson learned. Ny learning as we go we can build up a programme that will suit the abilities of the patient and hopefully slowly build strength in areas where he or she is struggling. Remember, never success or failure, only lessons.

I hope that this post has been helpful for you. If it has, follow my blog on WordPress and join the mailing list to get them sent direct to your inbox via email. For other information on who I am and what I am about, follow me on twitter. My handle is @ABIblogger. Thanks very much for reading and I hope you’ll be back to read more.

Socialisation & Engagement (Part 3) – Some Hard Truths

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

A Limitation of Freedoms

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

Struggles With Work

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

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

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

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

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

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

A Social Life

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

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

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

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

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

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

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

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

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

Socialisation & Engagement (Part 2)

The last post relating to Socialisation and Engagement was focusing upon the limitations, both cognitive and physical, that an Acquired Brain Injury places on us as patients. This post will focus on how maintaining a healthy lifestyle can be a positive thing in many ways but also being aware of some of the ways that, despite the fact that it is essential, the routine that is often required in maintaining that lifestyle, can hinder the activities a patient may want to do in terms of how they socialise with other people.

Maintaining A Healthy Lifestyle

One of the key parts of a recovery is to try and maintain a healthy lifestyle. When I say this, I am not suggesting a patient becomes a gym addict and starts eating only super foods (When I say maintain a healthy lifestyle, much of what I am talking about is, generally, basic common sense). In this section, I am going to cover the three most important aspects of maintaining a healthy lifestyle post-ABI: exercise, diet and sleep.

Exercise

Finding the right type of exercise to do post-ABI can be very tricky. It is something I still have problems with today. I have always had a passion for contact sport (football, rugby) and I have never really got on that well with the gym. I found that the people who attended gyms used to intimidate me ever so slightly. Their impressive fitness and muscular physiques certainly bring about insecurities when you start to compare your own (in my case) less than impressive physique. It can also be embarrassing as you try to learn to use the equipment. In the months after a brain injury, the memory is in a terrible state in terms of committing short-term memory into long-term memory (as I have mentioned in previous posts). It can be very embarrassing when you have to keep going back to the personal trainers and other people who work at the gym, to ask how to use the treadmill for what seems like the hundredth time.

Both of these obstacles may seem like problems you should just “get over” and that you should just get on with things. However, exercise in itself, needs to be something that you enjoy and something that is fun, otherwise how do you expect to motivate yourself to do it. The other aspect (feelings of inferiority or stupidity while in a fitness environment such as leisure centre or gym) can be common for people without ABI’s, but for people with brain injuries it is a very likely outcome. To overcome this, one way is to perhaps have someone who is more aware or familiar with your situation accompany you to the gym, to make sure you can manage until your confidence and memory is at a suitable level to be able to go on your own. In the last post, I mentioned the idea that most people arrange activities specifically for the fully abled, majority. Unfortunately, the same is true for venues as well. While most venues will have disabled access and some disabled facilities, places such as gyms are, again, meant for the fully abled majority. This again isn’t necessarily the fault of the venue; it is more the combination of the way society views head injuries (particularly the lack of education surrounding them) as well as the fact the majority of people are fully abled and can retain information effectively and are physically able to use the gym equipment.

However, a fun way (though I must admit living in the countryside and on the coast made this more enjoyable) to get the heart pumping was to go for a nice long walk. Not only does it get the heart rate going, and the oxygen moving round the body, but walking for longer than thirty minutes at a brisk pace starts to then consume fats that are stored around your body. So it may help you to drop a few pounds if you wanted to. As well as helping you shed any unwanted poundage, regular exercise will help with releasing endorphins, known for lifting the mood; making those erratic moods, bouts of depression or lethargy less frequent.

Rest & Sleep

Rest and sleep play a massive part towards how patients can manage our day-to-day lives. This section is relatively short compared to the other two, but Getting into a sleeping pattern of going to bed at similar times each evening, getting up at similar times each morning, sleeping right the way through with unbroken sleep, and even having a period set aside for napping during the day have been hugely beneficial.

For me, a lack of a regular sleep pattern can cause huge disruption in so many ways. I end up sleeping stupidly late (to the extent where I often end up missing lunch!). This then means that the times of my meals are thrown out of sync and that I end up eating at irregular times at the detriment to my health. I used to eat late at night, when you do this and then go to sleep after, it means that you do not work off the calories you have consumed and those calories end up getting stored as fat and you end up putting on weight (Not to mention, that disrupted sleep patterns often have a tendency to exacerbate my epilepsy and cause seizures).

After much messing around with my sleep pattern over a period of six years, I have only recently started to establish a sleeping pattern which allows me to get everything done that I want to in a day and does not seem like a chore.

Diet

Diet will be another important aspect of your daily life after being released from hospital after an ABI. When I came out of hospital, after my spell in the induced coma, I was 64 lb.’s lighter than when I went it. I’m sure many of you experienced similar things while in hospital. Losing that amount of weight in such a short period of time is not healthy, even in the slightest. When the human body is deprived of food for that long it goes in to starvation mode, meaning it lives off of the sugars and fats that are stored in our bodies for as long as possible while storing everything it possibly can from what it consumes (that includes, if the length of starvation exceeds a certain point, your body breaking down the protein in your own muscles to lives off).

It then takes a long time to come out of this process. Having lost much of our body sugars and fats, post ABI, when we are able to eat solid food again, I found that I was ravenous, nearly all the time. This is due to the fact that much of my excess fats that my body used to chew on when I got hungry weren’t there anymore. So after I came out of hospital, I over ate. Massively. I went from being approx. 11 stone when I left hospital to somewhere between 17/18 stone in the space of approximately six months.

The thing was, that the weight gain did not seem to be a gradual thing (as I remember it). I suddenly found myself in a position where I was hugely overweight. I hated the way I look and the way that it made me feel. If I could stress anything to anyone out there reading this, it would be; please monitor a patients diet and the amount they are eating as well as when they are eating. Sometimes it may not be that they are hungry, it could just be that they are lonely or bored. I know that was certainly the case for me at certain points: I ate because I couldn’t do anything else or I had nobody to do anything with. That weight gain had a devastating effect on my (here’s that word again) confidence. Due to how I looked and the negative thoughts this created, my self-esteem and confidence could not have been lower. Confidence and self-esteem have big parts to play in how we socialize, particularly on our desire to socialize and engage with people. This kind of thing can add to that depression I mentioned earlier. It is key to ensure that our loved ones not only reassure us but that we are assured of ourselves at the same time.

These things may seem relatively simple when you consider them in every day terms. However, what I will say is that trying to adhere to a routine for things that seem so mundane such as the time you go to bed or the time you eat your meals, because what would it matter if I were to do those things an hour later? The trouble is, and speaking from a young persons perspective here, we want to be able to do things without structure, without being told what to do, we want to break the rules. After all, isn’t that what being a young person is about? This is where the truth smacks us brain injury patients right between the eyes, we realize that we are not the same as other young people. Our lives won’t be the same ever again and maintaining these fundamental aspects to improve our health means that we will inevitably miss out on the social freedoms we feel we deserve, just as everyone else deserves those freedoms. I will clarify what I mean by social freedoms in the next post. Until then, follow me on Twitter for more news (@ABIblogger). Thanks and hope to hear from you soon.

Socialisation & Engagement (Part 1)

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

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

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

Physical Limitations

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

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

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

Cognitive Limitations

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

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

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

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

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

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