Let It Out…

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. Many of the last few updates I have posted recently have been following something of a theme. The theme I have been trying to follow and the message I have tried to impart has been about the importance of adapting to change; the change of outlook that inevitably comes with a traumatic, life-threatening injury. There is a change in your abilities and a change in lifestyle that comes with coming to terms with these changes without allowing them to dictate every aspect of your life. Both of them are an extremely hard process to go through. I have also tried to stress the importance of self-reliance and self-belief during said process and my belief that it is something of a necessity. I am of the opinion that a certain degree of the recovery we make and the process of moving forward, towards a target, is something you can achieve yourself; that YOU CAN create a fulfilling and enjoyable life after an acquired brain injury.

Contributors To Stress

The difficulty with living an independent life, maybe working or volunteering, getting back into education, some people may even be living independently, the difficulty is that they are undoubtedly stressful in and of themselves. When you combine them with the difficulty of living with a head injury; the after-effects both emotional and physical as well as difficulties with both cognitive and thought processes, combined with the every day demand of motivating ourselves, of getting up and trying to achieve our ambitions means that it can be very difficult to keep it together on an emotional level. The fact of the matter is, the general stresses of life can be difficult for people to handle, head injury or no head injury. So if you are feeling overwhelmed, over emotional, depressed or stressed out, know that you are not alone.

Mental Health, Emotions & Feelings

It shocked me to learn that’s around one in four people each year will suffer from some kind of mental health problem (predominantly stress and anxiety). That’s just when we consider the ordinary everyday population without any extenuating circumstances, for example life changing injuries, Post Traumatic Stress Disorder, or some kind of childhood trauma in their lives. The stresses that being an independent, self-reliant adult, who also happens to have suffered from a brain injury, are huge, we all know that. So we, perhaps more than most people, have both a right and a necessity to get those feelings off our chests.

Need To Talk?

While in past posts I have acknowledged the need for a loving and trustworthy group of friends and family in whom you can trust and confide in. However it also has to be emphasized that there are certain things that you absolutely do not want to share with those close friends and family. From personal experience, I know that this is not because of a lack of trust, more because you do not feel comfortable sharing certain pieces of personal information with those closer to you. Whether that is because you believe your concerns or confessions may change their opinion of you, whether you are embarrassed or ashamed of said confession or simply you would rather have those people did not know this particular piece of information. Whatever the reason, sharing intimate things with people who know you intimately is a very difficult thing to do.

I think that when we want to talk about our problems, our secrets and information of a personal nature, what we really want is somebody to just sit there and listen. This desire to disclose information can often be misinterpreted by those closest to us. Don’t get me wrong, the manner in which they misunderstand comes from the best possible place. I believe that when we share our problems with friends and family, it is natural for them to want to solve the problem for us or to help solve the problem ourselves, when that is not necessarily what we want. All we want is to be able to vent and have somebody listen. Quite often, from my experience, the person you have shared with will then want to really get into the subject in depth, which can cause us to get frustrated, leading to tension within the relationship. Considering the circumstances, that is the last thing that we need.

So, what is the alternative? Where do we go to talk to people? From my experience, talking to somebody impartial, who only has my best interests at heart and is there just to listen to me, has been hugely beneficial.

Services Available and Where To Find Them

NB: At the end of this blog post, there will be a list of links to the services I have mentioned below. I hope they will be of some use to you.

This type of psychological treatment and talking therapy can come from many different places in a variety of forms. I would advise searching all of the available providers to find the service that will benefit you the most, such as the many dedicated organisations and charities as well as private professionals. There is also the option ask for a referral to the Neuropsychological/Counselling services through the NHS facilities in your area. People reading this may see that final option as something of a road to nowhere due to the current circumstances and financial cuts to the mental health profession, meaning the services are perhaps not what they once were (which may be true to some degree). However, if you do get a referral I would urge you to attend a few sessions. You will get the opportunity to discuss issues that are bothering you, whether they are frustrations regarding your injury, issues at home, work, school or problems with relationships, with a trained neuropsychologist. Most importantly, you will get to express how you truly feel about these problems in a safe environment.

Or if you perhaps wanted something slightly less formal but still specific to the field of brain injuries, a good place to start would be The United Kingdom Acquired Brain Injury Forum (UKABIF). This online forum provides a vast amount of information relating to contacts, services and resources in the field of brain injury recovery. If you click on the resources tab, follow the head and brain injury signpost link where you will find a list of services. When you click on a particular service (in this case, support groups and helplines) it will take you to a directory of contact information for brain injury charities and organisations that spread across the length and width of the UK.

If you want to start closer to home, you can’t really do much better than contacting your local Headway UK chapter who can provide information in abundance regarding potential services in your area.

There is also the option to obtain the help of private professionals if you are merely looking to share your problems regarding your experiences and the effects of head injuries on you or a loved one. A simple way to do this, to find the right professional where you live is to visit the UK Counselling Directory that can be found online. You type your postcode into the website’s search bar and the website will provide contact information for the many counsellers and psychotherapists in your surrounding area.

Staying On An Even Keel…

If there is one thing that I have learned over the last six years, it is that life will hand you nothing. If you want something you’re have to go out there and take it for yourself. While I am a big believer in self-discipline, self-reliance and self-belief, I am also a big believer in the saying “…a problem shared is a problem halved”. I do not want my beliefs, particularly where I say that it is better to rely on ones self than it is to rely on others, to be misinterpreted. When I say that, I am talking specifically about performing tasks and acting on opportunities. I AM NOT saying that looking for help when it is needed is a sign of weakness and that communicating with people and expressing your emotions is a bad idea. In fact I would say quite the opposite.

The fact of the matter is that the stresses of everyday life, our opinions, emotions and feelings can sometimes be too much to handle. In my opinion, the need to express ourselves in a safe environment without the fear of scorn, ridicule or judgement plays a vital part in contributing to staying balanced on an emotional level. So I urge you, if you’re struggling with issues that you want to express then give some of these services a go. Let it out!

  1. http://www.nhs.uk/Conditions/Counselling/Pages/Introduction.aspx
  2. http://ukabif.org.uk
  3. https://www.headway.org.uk
  4. http://www.counselling-directory.org.uk
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Christmas; Simple Solutions To Ease The Pressure & Regain Control

The festive season is upon us, the end of another year, a period of cheer and celebration. At this part of the year, convention dictates we conjure up images that cannot help but be viewed as comfortable, idyllic. The image that has been created over years and generations has, at least from my experience, been romanticized to the point where the images and expectations we have in our minds in the month preceding Christmas are never lived up to. I am not speaking just for people who are suffering with a head injury; I believe that to be the case for many families around the country.

The Picture

When we consider Christmas for the first time in the year, when it suddenly dawns on us that it is creeping ever closer, we think of an ideal scenario with images that are out of a Christmas film or story book. The fantasy in our mind shows us exchanging gifts with loved ones beneath a Christmas tree, the smell of pine needles fresh in the air. We create a picture of ourselves wearing Christmas jumpers and Santa hats, eating mince pies and sipping on mulled wine while Wallace and Gromit is on the television. Finally, we see ourselves sat at the dinner table with friends and family, tucking into a sumptuous turkey dinner; we raise a glass as a toast is made wishing each other the best for the year to come as everything for the rest of the day falls into place.

The Reality in General

Christmas day and the build up to it is a stressful experience for all (the exception being small children), most of us don’t take on the responsibility of handling and hosting a Christmas day celebration. We go to our mum & dad’s, our grandparent’s or get invited to a friend’s house to celebrate the occasion. I have only ever experienced a family Christmas, hosted by my mum and dad or my brother or sister, aunt and uncle and so on.

These days are filled with humour, laughter and fun but also with inevitable conflict (my dad banning anyone from entering the kitchen in fear of someone ruining his masterpiece turkey, my niece and nephew arguing about who got the better present and so forth). It is going to be stressful, but we somehow manage to get through it. When that turkey is brought out and we sit at the table for dinner, the bickering and petty arguments stop, we tuck in and toast to the chef, the host and wish each other the best for the New Year. It is a good day but certainly not the image we had in our mind in the time leading up to it. That is generally how things go in the regular household.

The Reality For Us

What if that second option, the stressful reality of Christmas were made all the more demanding by a whole other set of stresses and pressures you had to deal with, in the build up and on the day itself? What about us, the people who certainly aren’t that organized, aren’t as together, people who are more susceptible to stress, fatigue and anxiety as a result of our injuries. Where do the problems, the practical issues that surround the festive period, lie for us and how do we overcome them?

The Present Problem

One of the biggest anxieties I face in the build up to the festive period is the worry about gifts and whom I am buying them for. Firstly, due to the issues I have with my memory, remembering all the people I have to buy for is more than a little challenging. This is made all the more taxing by the size of the family I have: parents, a brother, a sister, their partners, nephews a niece, grandparents to name just a few. When you sit down and actually think about it, there are a lot of people to consider, ABI or no ABI.

Not only do I then have to worry about remembering all the people to buy for but I have to ensure I then get them the RIGHT gift, a truly traumatizing experience in our family. When it comes to buying people gifts, there are the people who will tell you, straight down the middle, exactly what they want. Then there are those who are easy to buy for and are happy to receive a gift from you or the people who have very specific interests and are just as easily catered for.

Then there are the problematic people, the people who give you no idea what it is they want or would like. Not even an area they might be interested in. Keeping what they might like shrouded in mystery leaving you at something of a loss.

A Gift Wrapped Solution

Now, as I said earlier the anxieties of making sure you have remembered all the people you need to buy for and making sure you get them something they will appreciate can be a huge stress but one that can be solved relatively easily. It is a fairly practical solution that I used this year. With my mother in tow, I sat down at the table with a pencil and paper and, with the help of my mother’s excellent memory/organizational skills that all mum’s seems to have, we made a list of all the people I needed to buy for. We also wrote down any of the gifts I already knew I was going to buy and for whom. This left me with only a few people not catered for. With my mother’s help we soon found gifts for those who I found difficult to buy for.

I realise this may seem a very simple and not very extravagant solution but having time to sit down and think and talk through idea’s with someone who also knows the people you are buying for, such as another family member can be a simple and effective way to ease that particular pressure.

Trying To Be Social: Take Control of Your Condition

If you are anything like me, as a brain injury patient, you can find social situations, particularly ones with lots of people, noise and no respite difficult; children shouting, adults talking, the TV blaring and a CD of Christmas classics playing in the background. After a certain amount of this sustained stimulation, I know it about myself, I feel as though there is a pressure building inside my head, I am tired, I start to get snappy with people and irritable with them; I know that fatigue is setting in. Again, the solution to this is a simple one. After a period of time living with an ABI you will start to know your limits, recognizing when you need rest, when enough is enough.

When you start to recognize those familiar feelings, start to feel the warning signs, tell the people you are with. There is no reason to be ashamed of the consequences of your injury, simply inform whoever is hosting the Christmas party, tell them you need a lie down, a nap or just a quiet place to sit and relax. There is no reason why that should or could not be afforded to you.

Christmas; A wonderful Time Of Year

Despite all of the stresses that come with it, Christmas is still one of my favourite times of the year. It is one of the few, wonderful times of year where we can all get together and show our appreciation for one another. It should not be forgotten though that despite the idyllic pictures we have developed in our minds over the years it is a very stressful time of the year for everyone.

As well as that it should not be forgotten that for people such as us it is even more stressful. One way to help ease that pressure is to communicate with friends and family members and try to explain to them the type of issues we are dealing with. If we can find simple and practical issues to help solve our problems, alongside that communication and being in an environment with loving, supportive people, we can make Christmas the fun and festive day we all know it has the potential to be.

A Warning: The Need For That Self Reliance (Part 2)

Here is part 2 of the update I posted last week. Part 1 covered the current cutbacks that are being made to the National Health Service in the UK under the current government. Today, I will be focusing on the availability of employment and the cuts to the welfare state under the current government.

Work & Employment

Another place in society where we need to acknowledge a disadvantage, especially at this time of transition in the UK, is in the job market. Layoffs are becoming commonplace in most industries and the job market has become more competitive; it is simple math, more people applying for fewer positions.

In this more competitive market, when looking at it from the point of view of employers, it kind of makes sense that they are becoming more selective with candidates and using higher standards in their hiring process. Whilst I hate to admit that, we do have to acknowledge it. This philosophy does make it more difficult for people like us, people with permanent disabilities, to find manageable, appropriate, employment. Why would you employ disabled person? When you can hire a fully able to person with a lot less chance of problems in the workplace. Which leads me to…

Subconscious Prejudice

Part of the difficulty for a disabled person in trying to get back into work is, and I’m just going to put this out there, the presence of prejudice. Subconscious prejudice maybe, but prejudice nonetheless. Often, employment can either be terminated or an application rejected because of the potentials for difficulties that have to be allowed for regarding disabled people; more likelihood of days off, more safety concerns in the work place or, in the mind of the opinion of the employer, a higher likelihood for accidents in the workplace. Whichever way you look at it, the difficulties of hiring someone with a disability like ours far outweigh the positives in the minds of employers. It would be far easier to hire and employ someone without our kind of health problems when there are so many people, fully-abled people, out there looking for work. At this current time, it does not necessarily come down to qualifications or experience but convenience.

If I may provide an example for my own life, I had been hired as a server at a gastro pub. A job that combined work and foodservice I had gone past the twelve-week trial period by around three weeks and nobody had spoken to me regarding my work performance. As far as I was concerned, everything was fine. That is until I had a seizure at work. I was given a few days to recover and after those days rest I went to the pub to tell them that, as far as I was concerned, I was ready to return to work.

At this point I checked the work Rota only to see that my name and my scheduled shifts had all been crossed off. The manager then approached me telling me that the owner wanted to meet with me. I was very suspicious at this point but did as I was asked. As I sat down with the owner I was informed that my services would no longer required. I requested a written letter listing the reasons for my dismissal, none of which were really legitimate reasons. It seemed obvious that I had been laid off because I had had a seizure in the workplace. However, There was no way I could prove it and due to the short amount of time I had been working there, according to the citizens advice bureau, I was not protected by the many workers right schemes so there was little legal recourse I could take with a realistic chance of success. It was just something I had to grit my teeth and bare.

Benefits & The Welfare State

This is a fairly obvious one. We have all seen the recent crackdown on those who are beneficiaries of the welfare state. Once again these money-saving/making tactics seem to be aimed at taking advantage of the poor, the ill, and generally vulnerable.

Claiming money for ill health (whether physical or mental health problems) has developed a stigma and there is now a scrounger type narrative that surrounds it. With regards to how it is dealt with and treated in this country, it seems now to have become less about helping people and more about meeting quotas and ticking the right boxes. The challenge being to stop people from getting money and accessing services that are necessary for them to get by in the hope of saving money to meet monthly quotas and budgets.

This is by no means a criticism of those involved in the systems I have mentioned. The people that work in these institutions and frontline services, to some degree, have their hands tied by the rules, quotas and targets of the current government; to save money at all costs.

Looking Out For Number One

I hate the subtitle for my own conclusion. This is something that I am fundamentally against in terms of a mentality. It seems though that it is a mentality that is becoming increasingly necessary for people like us. All of the things I have mentioned above are a part of what makes this country such a Great place to live. Whether it is the health service or the welfare state, the safety net that was once there to keep all citizens from falling through the cracks is seemingly, slowly being removed. The country that we live in, where we could rely on the fact that, should the worst happen, there is a structure in place that would ensure we could not fall through the cracks, is slowly being disassembled to ensure the government makes as much money as possible. Whether that is through cuts to welfare, to frontline services such as health, education and policing or the privatization and selling of public assets. So it seems that if we want to access the things that we want and need, we need to go out and get them ourselves, for our own sakes or for the sake of the loved one we are fighting for.

Please Excuse Me…

This post has not been as specifically brain injury orientated as all of my previous ones have. I am sure you have noticed the changes that are happening in our great country right now as a result of government policy. The reason I chose not to aim it specifically towards brain injury patients is because all of the above issues affect not just the disabled but so many (as in the working class, the working poor, the young, the old as well as the disabled) so I have tried to keep this post broad. I apologise if you feel as though I have just been venting and that this has had a political agenda, I can honestly say, that was not my intention. I felt it my responsibility to highlight the fact that all of these issues do affect us and I felt that this was a warning that needed to be given. Before we know it, if we don’t stand firm and take action and responsibility ourselves, the removal of the services could be completed without us really being aware, turning “Great Britain” merely into “Britain”.

A Warning: Why We Need That Self Reliance (Part 1)

My name is Tom; and 26 years old and a survivor of an acquired brain injury. The last few weeks I have been looking at aspects of change in our lives as a result of the type of injuries we had sustained I have also tried to elaborate on the subject of self-belief and self-reliance, these factors being key to the recovery process. The subject of change will continue in this post but it is most certainly a different type of change. I am talking about the current change that seems to be occurring in our country (the United Kingdom).

As the victims of brain injuries we have to come to terms and learn to live with changes that have been enforced upon us. Whether those changes were the results of some kind of accident, crime or just a random piece of bad luck, the changes to us undeniably make our lives more difficult. As a result, and I say this not to be pessimistic but simply speak the truth, we often find ourselves playing catch up in most aspects of life. Following on from this, we have to acknowledge that we do require a certain amount of assistance in life from our friends, family as well as from the state.

Unconditional Support?

What I like to think is that the love and the help we receive from our family and friends won’t go away. However current changes being enforced by our government mean that is even more difficult for people such as us to access and obtain the services and help that we require. I am sure you are aware of what is happening regarding cuts to frontline services such as police, education I’m the National Health Service. I do want to share with you some of my own experiences of dealing with certain services, particularly the NHS, as well as providing certain facts regarding the cuts that have been made during this period of austerity. I believe that this post is a good way to follow on from the theme of self-reliance and independence because it seems, at this current time; the state is relying on your ability to be independent and self-reliant. I would consider this post to be something of a warning but also statements of fact, showing that this is not make believe or paranoia, that at this moment in time people with disabilities such as brain injuries are up against it more than ever.

The Reality Of Cuts To The NHS: What Is Happening?

The reality of these cuts to services, Services like the NHS, is that we are all ultimately worse off. We are all worse off in the sense that financial cuts to services media less efficient and less effective service to members of the British public. While the government maintains that they have not made redundancies within the NHS and have pledged to protect such frontline services, since the Conservative Party/Liberal Democrat party Coalition came to power in 2010 and up to the year of 2013, 7060 clinical staff including doctors and nurses had been made redundant.

These job cuts have resulted in a shortage of trained nurses in our national health service, meaning that we are relying increasingly on private agency nurses. All of these cutbacks and redundancies are part of an ongoing challenge to try and save £20 billion from the NHS budget, pushing forward with the conservative party mantra of “doing more with less”. The idea that a machine as large and complex as the National Health Service can do more with less trained staff, less funds, more rules and restrictions as well as more bureaucracy, is a ludicrous one.

Follow the link to see some of the job loss statistics that have occurred since the coalition government gained power. Bear in mind that these stats will most likely get worse with conservatives now a majority and without Nick Clegg and the Lib-Dem’s holding the Rottweiler’s chain.(http://www.theguardian.com/society/2013/dec/31/nhs-staff-laid-off-amid-savings-drive).

With an increasingly large number of GPs leaving the profession, waiting lists getting longer, times in the waiting room and times for referrals getting longer, decreasing Numbers of applicants for nursing training and huge cuts to mental health services, it seems as though the National Health Service that We love so much and that we are so proud of is being handicapped, disassembled and deconstructed by the people in charge for the purpose of financial gain.

If you follow the link below, you will find a list of statistics and facts provided by the blog of the Trade Union Council that informs us of the way that the NHS is being stripped down and the effects it is having on frontline NHS services.

(http://touchstoneblog.org.uk/2015/11/11-ways-camerons-cuts-are-hurting-the-nhs-fullyfundournhs/)

A Real Life Example

I touched on it briefly earlier when I spoke of the cuts to the many frontline services in the UK that are used by the majority of the population in one way or another, the waiting time for referrals. Here is an example that

One of the issues that affected me, probably the most actually is a problem with my mental health: depression, anxiety, anger and unpredictable emotional responses. The first two I listed were probably the ones that affected me the most. There were many contributors to the issues I think. There is the obvious one, the head injury itself and all of the loss that comes with that, the change in personality, the loss of certain abilities, the trauma that came with how the injury occurred (a physical attack). As well as those issues there was also the fact that I had been due to go to university and I was now no longer going, was feeling isolated and alone because we had moved to a new town and had (just before the injury) undergone my first case of romantic heartbreak.

All of these issues combined were obviously quite overwhelming for me. I don’t want to bore you with a detailed timeline of my mental state, but the first year after the injury was spent focusing on trying to come to terms with my injury, re-acquiring certain life skills that had been lost (i.e. my ability to read) and find ways to counter some of the physical issues I was dealing with (such as issues with my sight which had been badly affected by my injury). Due to where my attention was being focused I don’t think I was fully aware of my issues with depression. I also believe that I wasn’t aware of what depression was, why I felt so low, why I felt moody, craving alone time while feeling lonely at the same time. So the issue regarding mental health was not really addressed or acknowledged until I attended university.

When I arrived at university I was to meet with a counseller each week to discuss anything that might be bothering me on an emotional level. It was there that we realized that I was suffering from depression (and quite badly I might add). As we continued with these sessions throughout my three years at university my issues with depression started to ease. At the time I left, I was probably felling, within myself, the best I had done for a long time.

It was when I returned home that issues start to crop up again. So, at the next appointment with my neurological consultant, I requested a referral to the local neurological psychology service. After six months, my parents and me had a sit down, something was definitely up. We decided we would take matters into our own hands and self refer. We managed to eventually come away with an appointment after many phone calls and letters.

It was when I had been going to a few appointments that my psychologist was late for one of our scheduled sessions. When the doctor arrived, they informed me that, the reason she was late was that, there had been traffic on one of the roads between her previous appointment and the office at which I had been waiting. The distance between the two was approximately fifty miles. In our session, she went on to say that she was the only neurological psychologist on the staff at the NHS neurological psychology service and that she was responsible for attending to the needs of the entire county.

If you follow the link you will find a story regarding the budget cuts to mental health services in the UK. http://www.bbc.co.uk/news/health-31970871

Something Wrong

Now, if you ask me, there is something terribly wrong when the needs of patients in an entire county rest on the shoulders of a single person. I think that this doctor deserves immense credit for the work she does, in fact everyone who works in the NHS deserves credit for working within a system that, at present, has to operate blindfolded with both hands tied behind its back due to financial constraints of a government system.

This is where I will leave you. On my next post, I will be looking at other areas that vulnerable people such as ourselves rely on that are currently under threat and that need to be protected, for the good of all of us.

Overcoming Negative Influences & People

My name is Tom; I am 26 years old and the survivor of Acquired Brain Injury. I focused a lot on the importance of self-belief as well as having a supportive group of family and friends around you. These things can make huge difference throughout your recovery. Having faith in who you are and what you are doing combined with words of encouragement, congratulations as well as having a shoulder to cry on when things get tough, can in fact be the thing that is the difference maker in the rehabilitation process. Those supportive sentiments of close friends and family go a long way towards building up that sense of self belief, that belief that there is a life after a brain injury that can be productive, fulfilling and exciting.

But what about the people out there who seem to do their best to exude sentiments that make us feel the opposite to this, people who say things that are seemingly designed to try and bring us down. Having to accept the presence of people like this has started to make me think. When engaging with people, aside from the close group of people who have supported us throughout our recovery, do the opinions of other people, what they think of what we do and who we are while we go through our recuperation, do their opinions really matter?

Don’t Let Them Bring You Down!

My answer? My opinion? No. These people and their opinions do not matter in the slightest. We all have a rough target (I would assume), a goal we want to reach, a place we want to get to; the important thing is to believe that you can get yourself there. This is the thing, brain injury or no brain injury, we are, all of us unique. We all have talents, traits and factors that make us valuable, talented and the lack of a better word, special (I know it sounds cheesy and I swore I would not get too sickly but I couldn’t think of another way of putting it).

We need to keep the Faith that these talents and abilities, combined with a enough hard work and determination and maybe a little bit of fortune, Will eventually take us where we want to go and where we deserve to be. We, as survivors of brain injuries, of all people make better than anyone that life is not going to necessarily be fair. It will be hard, unfair and I’m kind where it can be. When life knocks us down, we have to get up, dust ourselves down and get ready to go again.

Trust In Yourself

I realize that I have covered issues regarding self-belief and confidence in the previous post but it does need to be mentioned again. If you cannot rely on and believe in yourself it does become very difficult to set yourself apart from the crowd and understand that you do not necessarily need the approval or the endorsement of others for your own actions.

It seems particularly odd to me that many people seem to have especially strong opinions about things that have absolutely nothing to do with them, that will not affect them and that they know very little about. Yet, they seem to think it appropriate to judge a person when they actually have no facts or any context, the two main things that tend to dictate the decision-making process. We have to acknowledge that in certain environments people are going to talk, gossip and form opinions based on those two things. You must have the courage and the awareness to realise that, even though it is not ideal, perhaps you’re better off on your own and without these people in your life.

Friends, Relationships & Trust

This is a difficult subject for me to address. I found, as I know you all have, that’s a brain injury changes your abilities in many ways, particularly in the ways that you perform socially.

I found that after I suffered my injury, many people I previously counted as friends once all that interested in staying in touch any more. The reason? I have spent some time asking myself this question over the last two years and I have in fact come to a conclusion. The truth is my health situation meant the time is now something of a burden, an inconvenience. My situation disrupted the norm because certain allowances had to be made for me. As this became more obvious to the people who were, at the time, the people I counted as friends it just became easier to not invite me to do things at all.

I have had plenty of time to think about this question. When I do now, I realise that I am not hurt by it. In fact, to some degree, I even understand it. I do not resent them for it, when I see them now we still get on very well. It is simply the way life goes; friendships will breakdown. It is an inevitable and regrettable fact of life.

But this is not what I am here to talk about what I want to say to people who have suffered a brain injury, if you find yourself associating with people whom you have not met before, do so with an element of caution. Something that I realized quite quickly when I started to socialize with my peers again comma is that there are people out there who will try to take advantage of us; treat us like things that into time that and the only be a friend to us whenever is something tangible to be gained from it from their perspective.

This may sound incredibly negative and I am not suggesting that we distrust everybody or in any way you cut ourselves off from society. All I would say is that after her brain injury you, I, we are very vulnerable and an easy target for people who would want to take advantage. As such I would suggest being very selective as to whom we trust. Since my injury, after experiencing people who, on reflection, What obviously trying to take advantage of me, I have kept a very small, very close circle of friends to support me alongside my family. After a time you will know who these friends are; they will be the people who come through for you time and again, the people who are there for you without you having to ask.

Let The Haters Hate…

Now, I realise that heading maybe far to pop culture for me to pull off, but in this case never has a truer phrase been said. As I said earlier, relationships breakdown that is an inevitable part of life; however, there will be some people who tried to use your injury as some kind of excuse for that breakdown or as an excuse to treat you differently. An example from my own life, when it became obvious that, due to my epilepsy as well as my brain injury, returning to work would not be possible for me I have been accused of having a lack of ambition and called lazy as a result. I have been told that because of the allowances that need to be made for my conditions, it will be nearly impossible for me to find anyone who would want to get involved with me romantically.

When this kind of nastiness occurs, we just have to tell ourselves that these are merely weak people trying to make themselves feel strong. Their opinions are being stated to cover their own insecurities. Deep down, we are much stronger than them. We must rely on our inner strength and keep the faith the what we are doing is right, that we know ourselves and our own situation better than other people do. Finally, we should acknowledge that we are different, the things we do are different because they have to be and I, for one, am proud to be different.

Believe In Yourself!

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

Life & Determination

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

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

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

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

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

Passion

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

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

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

Support

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

In Conclusion…

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

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

Communication Between Parties

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

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

Communication & Staying Informed

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

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

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

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

Left In The Dark

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

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

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

The Memory Of The Old You

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

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

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

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

Communication Between Parties

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