A Cruel World In The UK

At the end of my last post focusing on The Importance Of Family, it may have seemed as though I was starting to wander of topic when I was speaking about the current political and media discourse surrounding people with disabilities. I do get passionate when talking about that particular topic because when I watch the TV news or read a newspaper, it always seems to be an outsider looking in and telling us what having a disability is like, how we feel and what our aims are, based on very general, blanket surveys and statistics. That’s not to say that those opinions and statistics are unimportant but it does seem as though the use of expert opinions and statistics are being used in the wrong way; it seems to me that the current government has, grabbed the wrong end of the stick. As I say it may seems as though Im’ having a political rant but it is going somewhere, I promise.

All Good Will Is Gone

I read in a recent article that the percentage of the UK’s disabled population and lives on funding from the welfare state that wants paid work was in the sixtieth percentile (which is actually not bad when you consider that approximately half of the UK’s disabled population are OAP’s). These stats have been used as a tool to cut the welfare expenditure currently being paid by the government in order to reduce the deficit and increase the current spending budget. By using this statistic they have been able to justify cutting benefits such as the DLA (Disability Living Allowance) and introducing PIP (Personal Independence Payment, a non means tested, weekly payment based on the extent of your disability and how it affects your daily life. A payment much less in terms of the amount paid and is extremely difficult to access), cuts to Carer’s Allowance and an excessively strict screening process to become a carer, the cut to Tax Credits, Housing Allowance and so much more. All of these things contribute to people with disabilities and people living in poverty feeling ashamed of their disability and/or hating themselves for being the person they are and the life they lead.

The Power of Government & Media

“Make up your own mind, don’t let other people tell you. What we are saying is take a critical view, find out about it. Don’t believe something just because someone tells you to. If somebody says something, question it and work it out for yourself.”

– John Cleese

How they have justified these actions? The current government has stated that these cuts to the welfare state are to incentivize those people that make up the sixtieth percentile of people with disabilities that want to get paid work into actually doing it. The implication of that statement is that the disabled population of the UK have not been pulling their weight, have not been trying hard enough and that their inability to find paid work is because of their own failures and laziness, not the disability that they wake up and live with every day. The idea that people with disabilities are taking advantage of a welfare state designed and implemented to look out for their wellbeing, due to a lack of incentive, as opposed to being unable to do certain things due to their condition or disability is preposterous. Especially when certain disabilities can rule you out of most and, in some cases, all forms of employment. The accusation is that people with disabilities rely on the state to help them get by in life and that this attitude of reliance on government aid and welfare support from the disabled population is unacceptable. Isn’t that the point of a welfare state though, to look after the poor the weak and the vulnerable?

For further insight into the type of cuts and welfare reforms implemented by the coalition government since 2010 and now being expanded and hammered home by the Conservative government follow this link to statistics produced by www.unison.org.uk, the public service trade union.

When this is the narrative being produced by both politicians and certain aspects of the media, it is humiliating. The implication that the people with disabilities in the UK are a bunch of lazy, scroungers taking advantage of a system put in place to help us is terrible. When it is a dialogue being discussed by those who are in positions of power and influence it is even worse because other people hear it on TV and read it in newspapers and magazines and start to believe what they are being told. This dialogue becomes a virus and spreads to the point where a stigma attaches itself to the subject of disability. In my view, the problem is that people don’t think for themselves anymore, nobody ever questions what they are being told; they seem to just accept it as truth.

How I interpret These Changes

As a disabled person who has gone through many of the different processes in welfare, health and social care, I can only speak for myself. I think though, given the current mood of people with disabilities and of the poor and working class people in the UK that I am not alone.

These narratives I have mentioned in the above paragraphs that are being fed to the UK public are demeaning and diminish our disabilities in the eyes of the general population. The new model of welfare, health and social care is one based on doing more with less (an impossible feat by it’s very wording). Access to the services is based on a fixed model, with fixed criteria and no variation or accommodation for individual circumstance.

We are at a stage where the model is almost like this; an authority, one that hasn’t met you before, places a mark on the wall at two meters. They then state that to be eligible for the financial aid and the many programs of health & social care you need, you have to be equal to or exceed this height. Anything under that, even if you’re one meter and ninety-nine centimeters high, they say: “YOU DO NOT QUALIFY. YOU ARE NOT DISABLED TO A SATISFACTORY STANDARD THAT WE HAVE IMPOSED, YOU DON’T MEET WHAT OUR IDEA OF DISABILITY IS.” What the current UK government are essentially saying is that disabilities do not include variables such as I was born this way, or (what we are here to talk about) I had a brain hemorrhage (for example) and now I’m not good at interacting with people, I do suffer from fatigue, I can’t retain information as well as everyone else. But I can walk and talk, that’s enough for me to get a job. None of the different aspects and manifestations of different disabilities seem to matter anymore. We all have to be the same in terms of the definition of disability. Does nobody else see the flaw in this model? Am I alone here?

(Very Few) Exceptions To The Rule

When the systems implemented by the government and reinforced by narratives from the media, as a person with a disability, I can say that I have since felt lousy. Authorities have told me that I do not qualify for certain aspects of a welfare and health and social care system that we pay for as citizens of the UK with our taxes (paid by ourselves, parents, grandparents and great-grandparents, mine and yours). Instead we are told that there is not enough money in the pot and ill, vulnerable and disabled people are sent out to do their duty of a hard days graft. After all, “we’re all in this together” (accept the wealthy elite who seem to see tax as beneath them).Is this what we call a civilised, compassionate democracy?

A Conclusion: How All Of This Makes Me, A Person With A Disability, Feel

Being forced into work with a disability such as an acquired brain injury wreaks havoc with your mind. I started to question myself. I had been judged to be just as capable as everyone else, so when I realized that I obviously wasn’t, I questioned why I was doing so badly (a question with an obvious answer). But the state had said to me, “your acquired brain injury and all of the ways that injury manifests itself have been measured at only one meter and ninety-nine centimeters, not enough I’m afraid to be eligible for the welfare and services you have applied for.” The way I saw it, if the state has not judged me as disabled and ineligible for support and with all the things going wrong for me, there must be something wrong with me as a person. “Are the things people at work are saying true? Am I lazy? Am I not a team player? Am I rude, inappropriate and antisocial? Why am I getting so tired when nobody else is? I always seem to forget things, why is that?” You start to question your own ability, disability and it’s manifestations and you turn any anger and hatred that was previously aimed at the disability inwards, on yourself. You start to hate yourself and think you don’t have any value when you have been sacked from a job for another mistake or for an incident which is actually a consequence or manifestation of your ABI.

When this happens our self-confidence and how we see and value ourselves plummets. These are the type of things that carers do not get to see or feel with brain injuries and in previous posts (Only lessons and Simplifying ABI Recovery) I mentioned the dangers of not seeing the bigger picture or only seeing 1 dimension of a brain injury patient’s recovery, this is the type of thing I was talking about. Finally, when talking about the role of the family in last week’s post there was something important that I missed, seeing an ABI in all three dimensions is so important because the family are the people who can help build a patient back up when he or she continues to get knocked down in unkind world.

Thanks for reading, sorry if I droned on a little this week but I really want to emphasise some of the negative influences around at the moment as next week I will be moving onto the topic of mental health. To see more of what I am doing, follow me on Twitter (my handle is @ABIblogger) or follow my me on Instagram where my handle is abi_wordpress_massey. Thanks again and please, join the mailing list and follow me on WordPress to to raise awareness on ABI & TBI.

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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!

 

 

Brain Injury Recovery – Employment

After detouring a little last week, going from specific subjects and speaking more of my method of recovery using a process of Gradual Gains, we’re back on topic this week. Don’t worry, I haven’t lost the plot (or have I?).

This is one of the more difficult issues to address after you have suffered something like a brain injury. There are so many factors that have to be taken into consideration, all of those things that came up when I was talking about “Where am I now?”. A few weeks ago and the factors I listed when I asked myself Where Do I want To Be?” All jobs require skills. Whether that is working behind the bar at a local pub and having the necessary people skills, specific technical knowledge to do a job in IT say, or whether it’s a trade job such as carpentry, all require skills and the ability to learn.

Where We Are At A Disadvantage

Now, here is the issue and it comes with the nature of brain injury and it cannot be helped. It tends to be that people who have suffered an ABI are affected in the way that they think, in their cognitive abilities, thus affecting our ability to learn new skills, commit things to memory and not to mention fight the terrible fatigue that comes with a brain injury. All of these factors direct consequences of our injuries put us at a disadvantage when it comes to applying for jobs, finding & keeping work.

In conjunction with the issues that we face every single day, we also have to face the fact that we are currently in a socio-economic situation where the job market is extremely competitive. This does mean that there are some employers who are not enthusiastic about the idea of hiring someone with the type of disability we have. What we suffer from is an invisible disability where, from the outside, apart from perhaps a few scars, we appear to be fine but people cannot possibly see or understand the problems we are forced to deal with each day, even at home let alone in the work place.

What To Consider When Thinking About Employment

There are many things that must be taken into account when it comes to jobs and the type of jobs you should apply for and whether that particular job is right for you.

  1. Know your limits! Do not over exert yourself. Consider the type of routine you have at home, what tires you out? Do you get migraines or seizures, if so; is there anything that triggers them? What skills are not as badly affected by your injury? Consider your working hours in terms of shifts. Does the job you’re applying for suit your strengths as opposed to incorporating your weaknesses?
  2. Consider whether money is essential in your current situation. Do you have rent and bills to pay? If NOT, if you are living at home and money is not as much of a problem (like me, I support myself mostly through the compensation I received after my injury) then perhaps voluntary work could be an option. Not only could you test your strength, test your limits in terms of what is manageable regarding hours and concerning the work environment, it can also be a huge confidence boost when you get out there and mix with different people; it gives you a purpose, after a brain injury I know that sometimes it can feel as though there is no purpose. If money is a necessity then there are benefits available from the state to help support employment or voluntary work if you are unable to work full-time and have no other source of income (however I would add, do not expect the government to do you any favours at this present moment in time in terms of financial support).
  3. The type of work environment you will be in if you get the job. For example, prior to my ABI almost all of my employment history had been in the service industry, either as a waiter or behind a bar. When I was ready to return to work I went back to those types of jobs. Now it turns out that, according to my neurological consultant, this is the worst, most stressful environment someone with an ABI and epilepsy could possibly work in. So it is always worth talking to a consultant or doctor prior to applying for a job or accepting a job offer.
  4. There are some larger companies that receive government grants for catering employment programs specifically for the disabled. So it is worth looking around online for this kind of employment, schemes such as these stands to benefit both parties.

What We Don’t Have To Stand For!

We do have to acknowledge that we are at a disadvantage when it comes to seeking employment. As I have mentioned, the consequences of our injury have left us less able than other people when it comes to certain things involving cognitive or physical challenges or our social skills may have been affected. I would also guess that most of the people who are reading this that have suffered an ABI suffer from fatigue in a big way. Rest periods being essential to us in terms of managing what life throws at us throughout the day.

We have to accept the limitations that have been forced on us when it comes to looking for work and take them into account when looking at job descriptions and the work environment we will be in. There are certain things we do not have to stand for though, mainly, prejudice in the work place. We should be considered just as capable and be just as valued as employees if we are given the opportunity. Here are a few things that you may want to consider doing when taking on a job. The following list is more of a guide to protecting yourself and your position while you are employed.

  1. Ensure that when you take on a job and the terms and conditions have been agreed, that you sign a contract and make sure your employer signs it as well. Please make sure that you read the contract carefully, with an advocate if necessary, to make sure that you fully understand what is going to be required of you. The contract will explain things such as codes of conduct, responsibilities, working hours, benefits, holiday and so on. These being written down will give neither you nor your employer anywhere to hide should there be a legal dispute later down the line. Finally, with the contract, ensure that you have a copy of it yourself to take home.
  2. Ensure that you are receiving at least the national minimum wage for what you are doing. You do not deserve to be paid less than anyone else, for the same job, because you suffer from a disability!
  3. When you have signed the contract for your employment, I would advise you, straight away, to join the trade union for whatever industry it is that you are working in. For a minimal fee (a few pounds a month) you can get legal advice, protection and representation should there be a dispute between you, another employee or your employer in the work place. The trade union also makes disability discrimination a key focus in their aims and targets. It is good to have them on your side rather than having to hire a lawyer at your own expense, which, for many of us is not possible for financial reasons.
  4. If you are dismissed from a job, in your opinion unfairly or that your disabilities contributed to the decision, ask for a letter of dismissal written and signed by your employer, listing the reasons for your dismissal. The next step is to then compare the letter to the contract you signed and see if there are valid reasons for dismissal, again with an advocate if necessary. If you both agree there are not, then contact your trade union.

The Key To Success In the Working World With An ABI…

I wish I could provide a magic remedy that would guarantee success for all of us. Unfortunately though, I cannot. The best advice I can give you is that you need to be ready to acknowledge the disabilities and issues we have as a result of our ABI’s and instead of resisting them, incorporate them into the job search itself, apply for positions where the limitations you have are not going to be as much of an issue.

I would also suggest opening our minds up a little. Even though it does not pay, voluntary work can do wonders for confidence and social skills. If they are issues you are struggling with, then a period of voluntary work could be hugely beneficial. If you find that it has helped you improve certain aspects of abilities that you fought with previously, it can really go a long way to improving your chances of getting a paid job. After all, is that not something we all want? Voluntary work shows a positive work ethic, a positive attitude and capability. All of those factors will go a long way towards achieving achieving our goals and gaining the financial independence we all so desperately want.

 

 

 

 

Brain Injury Recovery – Independent Living

In my post the week before last, I moved on from asking Where Am I Now? am now regarding my brain injury https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/; asking questions like, what are the permanent physical consequences of my injury & how does my injury affect me both socially and domestically? What are my strengths & weaknesses? After I felt I had answered those questions in a sufficient manner, the next step was to highlight the goals that were most important to me. The intention to assess them and look at the potential difficulties I would likely encounter. https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/ Then I could think about how I would go about achieving them, the steps that needed to be taken, taking into account the answers to the first question I asked. Following on from last week and the goals I picked out as being most important to me, here is my view on my own situation regarding moving out and living independently.

Getting Out On Our Own

This is something that every adult, young or old, male or female, rich or poor, disabled or fully abled wants as they progress through life; independent living. As you get older and become an adult there are certain things that change in who we are. We develop social lives, a love life, particular interests and hobbies that are our own. We come to the conclusion that we want our own personal space; we do not need to be under the constant watchful eye of a parent. We can look after ourselves, perhaps in a nice, cheap, little one bedroom flat. With some tender love and care and some Ikea furniture, we could definitely make that place our own.

The Considerations & The Struggles

In the paragraph above, I painted a very romantic picture of what living independently is like. What I learned from my own experiences is that there are pretty severe reality checks in store. We hold the kind of romantic vision I described above in our heads. However, what comes with living independently is a series of heavy responsibilities that need to be taken seriously.

There are contracts to be signed, rent to be paid, direct debits to set up, bills to be paid to name just a few and finally, ensuring you are earning/receiving the money to ensure all of the payments can be handled. Also we must consider the fact we have to look after our new abode and we are also depending on ourselves for survival in terms of food, money and all the other necessities involved in life. We also must manage our conditions that have accompanied the ABI. We cannot be under any illusion that we will get to a point where these disabilities will go away completely. However, There may come a time with the right discipline, help and determination that we can get them under control. A position where we control our conditions as opposed to the conditions controlling us. To do that though means being strict in terms of taking the right medication at the right times.

Why I Do Not Live Independently

I have tried on three separate occasions with varying degrees of success to live independently. The main obstacle in this process over the past five years has been the ever-worsening extent of my epilepsy. Here are the ways I have tried to live independently

  • University was, to all extents a success. I achieved a 2:1 (BA) degree despite my ABI with a lot of support from the university and epileptic episodes were kept to a minimum.
  • After university, I went to live in London to pursue my dream of being a writer. Again, epileptic episodes were at a minimum but slightly higher than they were at university, which meant my dad having to come all the way to London once a month to check on how things were going with me.
  • After a year of living in London due to financial reasons as well as health reasons it was necessary to move back to Dorset. Upon my return, I found myself a flat and a job. It was at this point that things took a turn for the worse.

While I was living independently in Dorset, the number of seizures I was having escalated hugely. Being a larger than average young man (around 6,2 and 17.5 stone) I usually end up with a broken bone or a losing some teeth after a fit and living alone put me at huge risk if, for some reason, the fit I was having escalated and my health was put in more jeopardy. With the seizure’s becoming more and more regular and the potential risk to my health while I had one rising, it had become clear that living on my own just wasn’t practical or sensible at the time.

What Did I Learn From My Attempts?

What did I learn? Well, firstly that living alone and having your own space allows you to be who you truly are and it is wonderful to have that kind of freedom and independence. What we should all be aware of though, is what that truly means. Independence means you are doing it for yourself. For people in our type of situation where there could be a crisis or an emergency regarding many things; physical health, mental health, panic or anxiety attacks, it may be a good idea to ensure the place you have chosen to live is not to far away from people you trust who will make every effort to help you.

Secondly, I would say that moving out and taking care of a place of your own is far more complex just in terms of the technicalities and bureaucracy that are involved in making the whole thing official. Sorting out housing contracts, direct debits, council tax and ensuring that the place is right for you depending on your situation are complex issues that can be confusing for anyone, let alone someone who has suffered an ABI. This leads me to number three…

The third thing I learnt follows on directly from number two. I would advise anyone who has suffered an ABI to get someone reliable whom you trust to act as an advocate on your behalf. Or, if it is necessary, take advantage of the help the social services may be able to provide or it may even be a good idea to go and see an attorney who can help guide you through the process and help clear up any misunderstandings so you know exactly what it is you are signing up for. Just to clear up the bureaucracy that is in all those contracts. It is unfortunate, but there will be people out there who may try to take advantage of situations such as ours.

My last Piece Of Advice

Finally, My biggest piece of advice to anyone recovering from an ABI or a disability is to not rush the process. To take your recovery a step at a time and this is one of those steps that should only happen when everything is in place and everything is ready for it to happen. Particularly, only when you are healthy enough for it to happen. That is when you will have the most chance of success.

Where Am I Now?

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

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

My Brain Injury

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

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

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

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

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

Home Life

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

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

Work Life

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

Social Life

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

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

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

Conclusion

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

Post-ABI – Return To Work (Part 2)

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out, I approached the subject of returning to work after suffering a brain injury. It was only when I reach the end of the post that I realized all the advice I had given was really regarding all of the preparation needed before actually applying for a job. So here I am returning with the second part of that blog post, hoping to give you some more concrete advice directly related to the job market for us people suffering from ABI’s.

Being Honest With Yourself (Again!)

This may seem like a fairly obvious point but the job you are applying for must have a fair contract for somebody with a brain injury. All of the issues we deal with must be taken into account when applying for a job. One of the obvious ones to use as an example would be working hours. The majority of brain injury patients are unlikely to be able to work full time hours the same as everybody else. I say this not to generalize but to speak from experience. Ever since I suffered my brain injury fatigue has been a problem for me on a daily basis. As such, any jobs that I now apply for are either part-time or flexi-time. This piece of advice relates strongly to the last post, in particular the section about being honest with yourself and honestly assessing your abilities.

Similarly, if you have difficulty (as I still do) with large crowds, then it is not advisable to get a job working behind the bar in a nightclub. Much of this is common sense really and I’m sure that you are all sensible enough to know this without me telling you but I just thought it was something that should be brought up. What I am basically saying, in short, is to play to your strengths when you apply for work.

Being Honest With Your Employer & Co-Workers

The issue of honesty is an important one in any working relationship, even more so when one member of the workforce is dealing with a disability. If you are starting a new job post-ABI, it is vital that you make your situation clear to both your employer and your co-workers. As brain injury patients, we must overcome many issues in life that most people do not have to deal with. It is unfortunate, in this day and age, that overcoming prejudice in the workplace is one of those issues. However, in my opinion, this can never be achieved without 100% honesty on your part. Building a foundation of trust and honesty will go a long way toward overcoming it.

It is also important to remember that being upfront with your colleagues will most likely benefit you in the long run. People you are working with need to be aware of all the potential risks involved for you while you are in the workplace. For example, as a long-term sufferer of epilepsy, it is vital that my co-workers are aware of my health situation; know what to do should I have a seizure, and hopefully make allowances for the things I may not be able to or should not do. In the past, I have had seizures in the workplace and without members of staff trained in first aid, the outcome may well have been far worse than it was. Also, without sounding preachy, it is worth noting that if you suffer from something such as epilepsy, there is almost an element of responsibility to inform those you work with. I do not know if you have ever seen seizure but they can be very frightening things to witness. It is only fair to prepare your colleagues for what may happen while you are at work. I realise this will not apply to everyone, however I do know that epilepsy is a common consequence of a brain injury and it is a suitable example for me to give.

Pre-Existing Relationships

This is one of the first pieces of advice I would give to any brain injury patients hoping to re-enter the job market. Do your best to utilize any pre-existing relationships you may have in terms of employment. If you are still in touch with a former employer and you’re on good terms with them, it may be worth giving them a ring. Refreshing this pre-existing relationship can have many positive outcomes in terms of how successful you are while at work.

Firstly, if you have already worked for that particular employer, they will already be aware of what you can bring to the workplace and of your value as an employee. Secondly, having a job where you are on good/first name terms with the boss can only be positive with regards to your employer providing flexibility in the workplace to accommodate your health situation. And finally, this may seem like a simple one, when returning to work after an ABI I would suggest returning to work in an environment and with people that you are familiar with so as not to over stimulate your brain (potential consequences of this overstimulation run from fatigue all the way up to panic attacks and seizures).

Entrepreneurship

Finally, we get to the final heading of entrepreneurship. I will only keep this brief; as I’m not sure I know enough about it (yet). For some people after a brain injury the stresses and rigors of full time employment are not possible. It is all simply too much for them. So an alternative option is to perhaps start your own business. Think of something that you love, that you’re passionate about and would enjoy doing each day and then try to think of a way to monetize that passion. The bonuses of this (in the idealist thought pattern) are that you can arrange your own working schedule, pick your workload for the day and be responsible for all of your own business decisions. In some ways enabling you to get out of the rush and hurry of the world that is being employed by someone else.

Try Every Option

Sometimes it is difficult not to feel a little hard done by when, as a brain injury patient, you consider what you have lost. What we need to keep telling ourselves is that we are every bit as valuable as any fully abled person. We are hard working, friendly, driven and we have ambitions and goals as well. Only a positive attitude and hard work will overcome the rubbish hand we were dealt. It does not seem right that we should not get to pursue a passion in the work place because of sheer rotten luck. So my advice would be to try everything that you can and to go into it with an open mind. An opportunity, no matter how small, can always lead to something bigger and better. After all, that’s a place all of us are trying to get to, somewhere bigger and better, am I right?

Thanks for reading again. Please, follow me here on WordPress if you like what I am writing or find it helpful. To get more info on blog updates, follow me on my Twitter page (@ABIblogger). Thanks again and be well!