Socialisation & Emotional Instability

Socialisation & Emotional Instability

 

Emotional balance and states of mind are a difficult thing to manage for me. I see many of my emotion precariously balanced on a knife-edge throughout my day-to-day life. There are small moments, events or incidents that may seem insignificant to other people of the non-disabled community, that they can brush off in a moment and see these incidents as merely small irritations in their day-to-day life. What I have found is that a moment, which could be interpreted as the smallest inconvenience for them, can turn out to be the blueprint that will reflect my mood and my attitude towards other people and the world at large for the remainder of the day (and in some cases a period of days).

We like to think (when I say “we” I mean all of us, people with a disability or anyone else) that we have these emotions under control from the start of our day to the end of our day. Much of what allows us to keep that kind of emotional control is (I believe) our cognitive abilities, in particular our social skills. For people who have not suffered an ABI/TBI, in essence the fully abled population of the UK, waking up in a bad mood is an inconvenience; they may be grumpy, have a slightly sharper tongue than usual and slightly less prone to socializing. What is more, when issues such as anger, mood and emotional instability become a problem they still have their cognitive abilities in tact to be able to deal with whatever the issue is. They can think around a problem, read a social situation and decide clearly what is the best way to respond and most importantly of all emotional reaction can be kept in check and (in the vast majority of cases) the person can put forward an appropriate emotional response.

Why Is That Different For Brain Injury Victims?

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I believe that there are many factors to consider in terms of the difficulties of determining an appropriate emotional response to situations for ABI patients and the potential emotional instability that we suffer from. But these I believe are the biggest contributing factors.

Firstly, I would argue that people such as myself and many reading this post who have suffered an ABI have a tendency to focus heavily on the abilities they now lack, the things they can’t do since they suffered their injury which causes a feeling of insecurity and a sense of fear that those (what we the patients) perceive to be “weaknesses” will be exposed (a point I highlighted in last week’s blog post Anxiety & Low Self Esteem and other posts in previous weeks Go Back A Step – Depression and Identifying Triggers). Fear and anxiety are states of mind that will contribute to any emotional social interaction and by-proxy emotional reaction an ABI patient has.

Secondly, something I believe to be strongly related to the first factor, people without ABI’s or TBI’s tend to be better in social situations. I am not necessarily being specific about a patient’s ability to perform, say verbal communication, tone of voice, articulation and body language but rather an their ability to read and interpret those aspects of language and communication accurately and correctly when they are delivered by other people. The skill of interpreting the codes and conventions of communication are vital to social interaction and it is common amongst recovering ABI and TBI patients that those skills can be lessened, damaged or lost post-brain injury.

Finally, something that I suffer from a great deal and that is the ability to cope with the unexpected or with incidents that can ruin a plan that a patient has arranged. I have tried to emphasize the importance of developing a routine, developing positive habits and processes that help you manage your day and living with your condition as well as trying to find things that you can enjoy each day. When these plans go astray due to outside influences, our emotional reaction can often turn out to be disproportionate to the event itself. It is a lack of ability to get to grips with disappointment, anger or whatever emotion takes hold, master ourselves and to not let the emotions that come from that event disrupt the rest of our day and the mindset we carry throughout the day.

My intention this week is to explore these particular topics in further detail and then, in the next few weeks, try and provide some helpful techniques as to how we handle the different emotional instabilities and mental health issues that can seemingly come from nowhere and ruin days, even weeks.

Social Engagement – Self Doubt

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In a society that is applying increasing pressure on people to conform, to meet a required standard in their abilities, their appearance, opinions and behavior, it is extremely difficult for people with ABI’s and TBI’s to feel comfortable with who they are, the way they act and to know if the way they are acting would be considered “normal”. This societal pressure (heavily influenced by the media) means that many ABI/TBI patients feel anxious about the idea of social engagement before it has even begun. If the activity is a pre-arranged event, I know that I myself have spent days leading up to an event fretting, worrying about how people will see me, perceive me and whether or not they are judging me. When we apply this kind of pressure to ourselves the likelihood that things can potentially go wrong in social situations increases dramatically.

Social Engagement – Communication

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I think it is safe to say, at least from my own perspective, that after a brain injury, we are fairly unsure about ourselves. For a certain period of time I would also add that we don’t understand ourselves. We have gradually recognized that there is something different about ourselves after our injury; there is something about us that is different to everyone else. I often think that our (or at least my) emotional reactions can have a tendency to ride roughshod over our cognitive abilities and for lack of a better term, “common sense”.

I have found that I will often blurt out a response in a conversation that is a statement composed entirely by my emotions can often be blurted out without any real thought of how people around me in the conversation will interpret it. The way a statement can be interpreted by people consists of many things, the statement itself, whether or not the timing of the statement is appropriate within the “flow” of the conversation (so timing, subject, the opinions of those taking part in the conversation on the subject at hand and finally the direction of the conversation), the tone of voice, the speed of the conversation, body language and so on. From my experience with an ABI all of these things can contribute to difficulties in social engagement. Mostly because of a patient’s inability to take in all of these contributing factors, decipher the meaning, think of an appropriate considered response and deliver that response with all of the contributing factors I mentioned previously applied so that other people in the conversation can interpret the correct meaning but also the fact that those people do not consider all of the intricacies of social conduct. Those intricacies have become so engrained that they do them almost automatically. Whereas for patients, many so called automatic bodily and cognitive functions have been damaged so that understanding, performing and interpreting those functions in a social setting is incredibly difficult.

What Is The Result? Emotional Instability

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Well when you consider the issues I have mentioned regarding self-doubt and the difficulties brain injury patients have when it comes to social interactions and the pressures those things ensure is that emotional knee jerk reactions can often overtake the processes of composing a measured and appropriate response.

For example, when we are involved in a conversation and (as so many of us experience) a statement we make is met with an awkward silence and the other people in the conversation staring at you, unsure how to respond, panic kicks in. The silence is deafening, we start to wonder what we have said and done, what the other people are thinking. We also feel the colour in our cheeks rise; we are embarrassed, humiliated, and angry at our inefficiency. The deafening silence continues so we try to make amends by filling the silence. We start talking again, not realizing that the things we are saying this time are just as awkward for the people listening as the last sentences were. We keep talking though like a man with a shovel who just keeps digging until finally the reaction, the looks on the faces of the other people (amusement, embarrassment, disapproval, confusion) and the overwhelming silence forces us to clam up.

Here is where the anger kicks in; we can react angrily to the people who we are talking to; “What the hell are you laughing at?” Or “Don’t you dare laugh at me!” Or we can be angry at ourselves, embarrassed and humiliated, attacking ourselves for our lack of skills, our inability to keep up with the conversation. These reactions to social engagement, ruled by emotion and reaction can be devastating to a re-integrating post-brain injury. There our many outcomes to a circumstance such as the one that is described above, each one detrimental to a patient and how they react to social engagement and how other people receive them.

The first, people can feel uncomfortable around you. These are the people I find that don’t really have the slightest clue about the type of battle we are fighting and have to fight day in day out (your true friends will understand and will know how hard this is for you and will make allowances for the social faux pas you make). The second is that you will become more resentful towards your condition, allow that anger, embarrassment and awkwardness to turn inwards so that you feel uncomfortable or even ashamed of who you are. The final one is that experiences such as the one I have described can make you unwilling to socialise and wake you more introverted. The last two issues for me are the most harmful. The ones where you start to despise yourself and your condition and become ashamed of who you are. NEVER BE EMBARRASSED OF WHO OR WHAT YOU ARE. None of us asked for this and the final two issues I have spoken about in this paragraph can lead you down a path towards isolation and loneliness which can then lead to deeper more troublesome psychological/mental health issues such as depression, anxiety or even a form of escapism through something like drugs or alcohol. All of those things are detrimental to our recovery.

Coping With The Unexpected

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I have spoken before about the importance of developing a routine and how a solid dependable one can have a really positive influence on the way we live our lives post- acquired brain injury. One thing I can say though is that too much dependence on a routine to make your life tolerable can have potentially damaging consequences. This is due to the fact (particularly when parts of your routine rely on things that are under the control of other people) that things beyond your control can disrupt your routine.

Take yesterday as an example. I woke up in the morning after having a dream. The dream was about a person (she broke my heart actually but that’s a story I wont go into) so I woke up angry, reflecting on all the ways she had hurt me and how those wounds were still sore. So I was angry before I even started the day. There are things I should have done in the morning to gather myself but I didn’t think properly, I was overwhelmed by a sadness and anger. Already, here was something I can’t control affecting me in a negative way.

After I had a cup of tea and had appropriately woken up, I decided to go into the local town where I would have breakfast and do some work in a local café (this is something I do often as the mile long walk to town gets me some exercise and gets me out of the house amongst people, both of which are important as being a writer can be a lonely profession and by its very nature is a sedentary one). I undertook the walk, with that haze of anger, frustration and sadness still hanging over me like a rain cloud. But I had my routine to look forward to; get a bacon sandwich at my favorite place (they do THE BEST BACON SANDWICHES EVER!) and a cup of tea, go to one of my favorite coffee shops where I have a cappuccino, use my E-Cigarette and listen to music for about half an hour before going to a different coffee shop to do my work.

I arrived in town, still feeling less than happy but the walk had done me some good. I went to get my bacon sarnie but as I approached the doors I saw that the blinds were down and there was a notice on the door that read: CLOSED FOR REFURBISHMENT – UNDER NEW OWNERSHIP. When reading this I couldn’t help but feel as though this might not be my day. I tried to continue as normal, I went to my café to try to enjoy my coffee, enjoy my E-Cig and listen to music. I tried to compensate for the absence of a bacon sandwich with a pastry in the café but it just wasn’t the same. I listened to my music, watching the other people sat outside drinking coffee and smoking REAL cigarettes (bastards! I gave up seven months ago).

My mood was moving further into decline, I was thinking about the girl, I was thinking about the lack of bacon sandwiches and cigarettes. So I moved on to my next café where I could work on my blogs, thinking I could take my mind off of things and concentrate on something else. However, when I started to write, I realized that the topic I was writing about (brain injury and emotional response) was making me think about all the other things in my life that I hate and resent. That hatred normally stays under the surface but today it was bubbling over. Then, the final nail in the coffin of the day; I received my coffee from the barista and received a luke-warm beverage. This was the climax of a day of complete crapiness. I closed my laptop left the cup of (now stone-cold) coffee on the table and walked home with thoughts of the girl that broke my heart, the effects and manifestations of my disability, the lack of bacon sandwiches, the fact that I wanted a REAL cigarette but couldn’t and the fact that someone who is paid to make coffee as a profession couldn’t make one to a suitable temperature, weighing heavily on my mind. I was so unbelievably angry at how the big things in life had all popped up at once to impact on my day combined with a series of little things aiding them in their sabotage of my emotional stability, state of mind and mental well being. This is actually the reason this blog comes to you a day later than anticipated.

That’s Life So…

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My point is that I had expected for things to go my way the other day and in many ways (nearly all the ways I can think of) they certainly did not. So from that experience I’ve had and the issues I spoke regarding socialisation earlier is that we cannot necessarily predict how life and events are going to work out for us. I think it is important that we don’t set too much store by whether or not things go well for us first time or indeed, all the time. I think that what we have to do is to try and do our best to handle situations the best that we can and not be too disheartened when things do not go our way. Equally important is our ability to overcome the disappointments, the times we do not succeed and develop an ability to come back and try again. We mustn’t allow the times where it seems as though the world is against us and we become angry, embarrassed or humiliated to dictate our actions in the future.

There are plenty of disciplines, thought processes and physical actions we can take that can improve our emotional stability as well as our state of mind and mental wellbeing that I will be exploring over the coming weeks. I hope that this has been beneficial to you all and that you will be back to read over the coming weeks. Meanwhile follow me on Twitter @ABIblogger to follow what I am up to. See you soon!Emotional Instability

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Anxiety & Low Self Esteem

Anxiety & Low Self Esteem

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This week I am moving on from depression to look at another issue I suffer with, anxiety, paranoia and low self esteem. Now, a key part of looking at anxiety in my opinion is truly defining what it is and what it means. I think that it is fair to say that one is a biological reaction that everyone suffers from to different degrees of severity when there are moments of stress or more accurately anticipation. That is nervousness. I then believe that Anxiety is a much deeper condition that is engrained in the mind and is very much to do with confidence, how we view ourselves and how view the world. I realise that description of anxiety may seem very simplified to some people but I will expand on why I think that as the post goes on.

Is it Nerves or Anxiety?

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I often think that there is confusion when talking about anxiety. I think that many people confuse anxiety with nervousness. It is very often that before a significant event that you are about to participate in you may well be nervous. You may suffer from butterflies in the stomach, light-headedness, shakes/tremors or poor communication skills. Whether you are about to deliver a speech at a work conference, participate in a competitive sporting event or approach someone to ask them out on a date. In the lead up to the event we are nervous both about our performance and the outcome.

All of the things I have said above are also symptoms of anxiety. There is, from my experience, a large difference between the two conditions though. When it comes to being nervous about something is that it is generally noted by many people (professional athletes, professional businessmen and women, professional speakers) that once you actually come to the point of performing whatever task it is that has got the nerves jangling, your body tends to react biologically, adrenaline kicks in and the nervous feeling goes away as you focus on your task rather than worrying about what might go wrong. Your mind becomes focused on participation rather than outcome; you lose yourself in the moment in what you are doing. To simplify it, nervousness is a biological response to a situation. That is how I see it anyway.

However anxiety is a condition that is very different to a person who suffers from nerves. I find when I am suffering from anxiety; I tend to look at things in a much larger and broader view. I see the consequences of my potential actions and my failures, before siting what I would do if or when that potential consequence comes around and so on and so forth. I continue to look at the potential negative outcomes of my actions and my decisions and then create a trail, a story made out of potential scenarios that haven’t even happened yet but nearly always end up with a bad outcome.When I have built this imaginary mind map, all of the things that could go wrong (in my experience) generally come from mistakes or bad decisions I would make. When Then I start to examine myself, looking at the things I am bad at, the skills I don’t have instead of focusing on all the things I am good at.

My Social Anxiety

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In the early stages of anxiety and how the condition develops (this is just my opinion, I am speaking in terms of what I think about the way my own mind works, not from medical fact) I focus on my flaws, my mistakes and my lack of skills rather than the positive parts of my mind and myself. When the lack of certain abilities sabotages us in a particular way, that memory will remain with us and so will the emotional response that came with it whether that is sadness, anger, embarrassment or any other negative emotional response you wish to think of. Those times where we have been unsuccessful at certain things or certain abilities where we are less able have been highlighted act as a catalyst for periods of anxiety. I think that much of the anxiety I suffer from is doubt in my abilities and myself and having to put myself on display in a place where those, for lack of a better term, weaknesses may be exposed.

I can also be prone to small emotional breakdowns that can strike at any moment. I think lots of people who have suffered an ABI, TBI or even a severe emotional trauma can relate to that. When stresses in public places such as (for me) an invasion of personal space, strangers approaching me, an unexpected pressure being put on me or a decision that needs to be made it affects the way I think, my social and communication skills as well as my mood. An alarm bell goes off in my head because any of those situations that occur now are a threat to my safety and my wellbeing. At this point I want to turn tail and run. I want to hide somewhere, I want to go back home, get into bed and hide under the covers where I am safe and I cannot be exposed as a cripple or a spastic or any of the other negative generalized terms that ignorant and uninformed people use to describe people with disabilities. Words that have somehow found their way into my mind that, in times of darkness in my own mind I apply to myself. It is an attack of self-sabotage. When I re-read these words I can’t help but think what a coward I am. I’m a coward for caring what these people think. Their opinions will be informed by the actions I perform and the things I say which are not always in my control and are in no way my fault.

Anxiety – Is It A Cyclical Thing?

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When I look back at what I have said regarding my social anxiety it does, it all comes back to how I view myself, my own abilities and caring about how people perceive me and my disability. The last point is what really makes me angry with myself though, why should I give a damn about what a bunch of strangers or uninformed people think about whom I am? Why should I feel ashamed of the way I am as a result of my ABI? Finally, why do I allow their opinions and thoughts to pressure me into revealing the worst manifestations of my disability? It becomes a cyclical thing; trying not to upset or offend anyone with your disability or even reveal your disability, when you’re in a situation where the consequences of your disability emerge upsetting or scaring someone with your actions or what you say, then going back to trying to hide your disability or offend or upset anyone except this time with more of a pressure on you to not reveal who you truly are. The anxiety and the pressures are amplified each time we try to hide from who we are. The best thing we could probably do is just to be ourselves and say, “This is me, take it or leave it.” But are we brave enough to do it? Are we brave enough to overcome the pressure, the anxiety and the expectations of a fully-abled society? I have proven in this section that I am not. Not yet anyway.      

The Importance Of Family

Here I am, back again. I suppose I wanted to apologise for the last few weeks where the posts I have written may have seemed a touch negative. I feel that I don’t need to defend myself so much as explain why I have highlighted the potential damage things such as Simplifying ABI Recovery and downplaying manifestations of the injury can be to the overall recovery process. If we search for Lessons from the outcomes of challenges an ABI patient takes on as opposed to trying to give the outcomes a definitive and often one-dimensional label (i.e. a success or a failure) then everyone can learn from the experience.

What My Family & I Have Learned

I have learned that the more we (as in my family and I) attempt to understand my injury the better we are for it. Having learnt more about me, my abilities, my limitations and my strengths and then tailoring a recovery path around those things, we believe we are making slow and steady progress. It takes a long time to learn about the issues that surround ABI and an equally long time to get used to and adapt your own thinking and behaviors to a person who, very often, has been significantly altered by their injury. It also takes years of expert knowledge from some of the smartest and most intelligent doctors to really get to know who we (the patient) are and what we are about from a purely objective point of view. So imagine how incredibly hard it must be for those who are not objective but subjective and have had to bear witness to that change of personality and abilities. What the last post have been about is emphasizing the role of educating ones self and learning from experience can be to making a path towards recovery an easier one for patient and carer alike.

What Can The Family Provide After An ABI

“There’s no vocabulary for love within a family, love that is lived in but not looked at, love within the light of which all else is seen, the love within which all other love finds speech. This love is silent.”

-T. S. Eliot

The family and the home environment after an ABI, as I have stressed in my last two posts, will have a dramatic effect on the patient’s attitude, confidence, mental state and all other aspects of a person that we do not see. Or perhaps we see them only in their actions and maybe only in mere flashes, in single moments (that final thought was a sentence that only just occurred to me, just this second).

From my experiences as an ABI patient, I was fortunate enough to be provided with a relaxed, quiet environment. I was allowed to take challenges on in my own time. I was given time to relax, sleep when I wanted to sleep, I was gently encouraged to do things if it seemed I was becoming to negative or was closing myself off and shutting myself away, but I was never put under any kind of pressure. I had my own room with things that would keep me entertained during the day in a house where there was a garden if I wanted to go outside. Finally and, perhaps most importantly, I had a mother and father who were always supportive, accommodating and flexible to my needs, willing to work with my strengths and around my weaknesses, and willing to fight for me in battles I could not hope to win individually.

All of these things combined allowed me to move forward with my life after an ABI and get to where I am today. We are not a rich family, a family with powerful influence or friends in high places; we are just a close one. What perhaps I didn’t realize at the time is how extremely fortunate I am to have the family that I do around me; The father who worked split shifts – six AM until twelve PM followed by seven PM until two AM – and a mother, sister and brother who would arrange their own work schedules as best they could to ensure I was not left alone for any prolonged period of time (not always possible but they did their best and would always come and visit me after they had finished their shifts). Because for every person like me who was fortunate in this way there are plenty more people, either OAP’s, people from broken families or just people that slipped between the cracks, that don’t have the kind of support that I did.

How Does ABI Fit In To Current UK Society?

The short answer is that it doesn’t and that we are not considered or represented and our injury is thought of in society, particularly in bureaucratic and institutional terms as the same as every other disability.

Now I will give you the long answer. What I have learned, especially since it now directly affects me on a day-to-day basis, is that in recent years things have changed in British society, and from my point of view for the worse, particularly in terms of our frontline services. Due to government policy and directives as well as huge budget cuts, Doctor’s are put under pressure to provide outcomes that look good statistically rather than ones that benefit the patient and their wellbeing in the long term. NHS budgets are being cut while doctors are being forced to do more hours for less money. Outpatient services attempt to shoehorn people in to programs that are not suitable in the hope of providing some kind of suitable statistical outcome while having no real resources to provide any long-term care. Most people are ineligible for most forms of welfare due to the process now being means tested and based upon a report written by someone that has met you for one hour to conduct an “assessment”. Finally, in the past six months I can think of two separate occasions where medical professionals, while I was in a vulnerable state, have taken advantage of my situation to placate the people at the top who have set their statistical targets.

Playing To Win

Now these issues have not been as much of a problem for me because of the support I have from my family. However, if you are not in the same situation, what do you do? What would have happened to these people, if they had found themselves in the same two situations I mentioned, who don’t have the advocacy and the support that I have had to fall back on? It’s nothing short of scandalous the way that the people with disabilities are being treated in this country at the moment, portrayed as lazy scroungers or fakers, what’s worse is that that poisonous mentality is seeping into the media and into general society.

It seems as though, at the moment, with the huge financial constraints imposed by the government, any good will that was previously the foundation of things such as the NHS and the welfare state (both are things we, as citizens of the UK, have been paying for since the mid-1940’s with our taxes by the way) have been obliterated. It has now become a charade, a game of sorts. They have set the rules and if you want to win you have to play but it is vital that we have our teammates beside us, playing just as hard, if not harder than you are to ensure that you pick up the win.

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.

 

 

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.

Acknowledging Disability

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

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

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

A Short Series Of Questions

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

A Short Universal Answer

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

The Fear Of Change

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

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

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

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

What Do We Do?

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

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

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

Brain Injury Recovery – Taking Back Control

I have only just realised it, but it is only now that I have written the previous four posts on Independence, healthEmployment as well as the idea of Gradual Gains as a method of obtaining these goals, that I am in a position to write this particular post. It all comes back to that idea of self-assessment regarding ABI recovery that I posted at the start of the New Year. We have to be constantly aware of our weaknesses and the issues we have after suffering something as life changing as an ABI. Not only that but we have to always be conscious to the potential challenges, struggles and, sorry to say this, prejudices we may come up against when it comes to addressing those difficult tasks.

Back To That Metaphor

I come back to the same metaphor, the idea of building a house, using that metaphor has allowed me to prioritize what I am hoping to achieve regarding my recovery and given me some kind of perspective in terms of what a successful life after ABI means, just how difficult it will be and how long it could take. To say it could take a long time is silly really, it is now six and a half years since my injury, I live at home with my mum and dad, I have no job and my situation regarding health such as epilepsy, anxiety and anger is still in bad shape. Since I have shared with you what my main goals are, I am now going to share with you the order in which I am going to prioritize and pursue them.

  1. Health Is My Foundation – I have realized as my struggle with an ABI continues that if your health, whether the state of health is an affliction that is a consequence of the injury or a pre-existing condition, a poor state of health always has the potential to pull you back. Take me for example; I am currently working hard to change my life style in a way that may positively affect my epilepsy and the frequency of my seizures. I have drastically reduced my caffeine intake, given up smoking, and started taking multi-vitamins and drinking pro-biotic drinks as well as undergoing a drastic change in types and amounts of medication. The main reason for these changes is due to the fact that so long as epilepsy still has the potential to disrupt my life at random and, often, inconvenient times, my chances of progress are poor. If I can conquer epilepsy, if I can control it and have it not control me, then it will provide me with a foundation I can build on to move forward with my life. The problem is that this can take time, so the best way to approach it is to concentrate fully on the health situation. Not to have any other distraction or targets in mind and gain as much control over your mind and body as you can.
  1. Employment & Financial Independence Are The Walls – When, and only when, I am sure that I am in control of any illnesses or conditions I have, I intend to start pursuing more ambitious goals regarding my writing ambitions. I have tried the paid work route, working for someone else and it has not worked mainly because of the restricted abilities I have as a result of my ABI. As such, I have decided to try and set up my own business as a freelance writer (which this blog is the start of really). As well as the idea of starting a business, other options are to find work within a private business, there is the option of seeking out businesses who profit from running programs by providing paid employment and empowering the disabled, or it could be that you will find fulfillment simply working voluntarily with charities. You will also find that there is government funded financial aid available. Once you have gained, hopefully paid employment, then you can start to dream about the idea of independence. Employment and hopefully, the wages you will be paid as a result will provide the walls that surround you and protect you; if you need something to help your situation you can buy it, if you wanted to obtain some kind of private medical care you could get it. It seems to me to be the next logical step in this recovery process.
  1. Full Independence Is The Roof – I think I can speak for many people who have suffered an ABI when I say that this is the overall goal. I think it would be naïve of me to suggest that we can live alone with no support ever again. However I do believe it is achievable for many of us to live a life where we have our own place of residence, we support ourselves or are as active as possible whether that is through paid employment or voluntary work.To say we can achieve these things alone would be, as I said, naïve, but with more than six years experience of living with an ABI, I know from experience that improvement and movement towards independence can happen. We can get the roof over our heads, the last part of our building project. It will be long, it will be difficult and it will be slow but we can move forwards and start to take control of our lives back, slowly but surely.
  2. Any Successes That Come After Are The Decorations

Taking Back Control

When it comes to all of the things I have posted about in previous weeks and prioritized above, as time progresses with an ABI,we come to the realization that it is not going to mend the same way a broken leg does. We will most likely be living with the consequences for the rest of our lives. So we start to question, if we are facing hardships (using my situation as an example) such as living at home, no job and not much of a social life, we start to question, “will things ever be better than this?”

The answer is that they can be. It is the changes we fear and the unknown challenges we are to face that frighten us most. But with the right attitude, a steady platform of health to build on, ensuring we know our limitations, we certainly can overcome those daunting tasks. Finally my most important point I think, is not trying to take on too much, too soon and to take on more than one thing at a time. When my situation gets me down, I try to think of it like the story of The Tortoise & The Hare, slow and steady wins the race!