Only Lessons

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

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

Failure

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

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

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

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

Engaging With Things & Testing Ourselves

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

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

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

No Failure, Only Lessons

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

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

Advertisements

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 – Where Do I Want To Be?

N.B. Before we start, may I apologise for my absence recently in writing fresh blogs inconsistently for https://lifeafterabraininjurydotorg.wordpress.com, the last few weeks have been an unmitigated disaster regarding my epilepsy. You have been fantastic over the last five or six months and I can’t apologise enough. They have changed my medication now though, dosage and type, so from here I’m hoping for progress and more consistency on my part. Thank you again and please follow my blog, follow me on Twitter, my handle is @ABIblogger and share the posts on there, that would be immense! Now, we shall begin…

Going Back A Bit…

The lead up to this blog post goes quite a way back, so let’s start from there. Over the festive & New Year period, I was considering the idea of change and what that exactly entails. When I say change, I mean actual change. Not the usual rubbish you seem to get at that time of year; “I’m going to give up drinking,” or “I’m going to join the gym and go at least three times a week.” Most often, what actually happens is that the first promise is broken by the end of the first day back at work after the Christmas break when, after work, we’re gagging for a pint. The second is broken by a gym membership that is used three times, never used again but continues to take £19.99 out of our bank account every month for the next three years.

The problems with these examples are not the promises in themselves but the way in which they are made. The two examples I gave are very noble promises done with nothing but good intentions for the person’s health. However, while the promises in themselves are good ones, they are very rarely built on a foundation of reality, quite the opposite in fact. They are made in reflexive manner without thinking of the variables in their lives; the constraints on their time, their strengths and weaknesses and, in the end, the promise filled with good intent is doomed to failure.

Where We Are Now?

Now, my first post of the New Year spoke of the nature of self-assessment. Last week after a missed update (due to epilepsy related complications) I tried to lay it all out in the open for you in a way that was manageable in terms of length and that was hopefully readable and something you could all relate to. I would hope that in the month that has passed since I posted A New Year – Self Assessment (https://lifeafterabraininjurydotorg.wordpress.com/2016/01/07/a-new-year-self-assessment/) all of you who have been reading my blog have had time to look at yourself, look at your current situation and ask what is possible and what is not, assess your own abilities & disabilities, strengths & weaknesses, what you enjoy and what you do not (hopefully last weeks post – Where Am I Now – https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/ should have given you some indication as to the type of thing you need to think about) Hopefully, having thought about these things, asked those difficult questions and answered them, having really looked at yourself, you will be able to answer another tough question: where do I want to be?

Where Do I want To Be?

I think there are certain things that we, as victims of Acquired Brain Injuries (ABI’s), can all say. From here I am going to assess the four things in a brief way (if I want into depth on them I’d writing an essay!) that most of us have a burning desire for. Firstly, I will be putting them in no particular order. To give them any kind priority would be insensitive and ignorant on my part as I know that many of you reading this would put them in a different order, may have completely different permanent issues than me, and some people would want to exchange one or two for other things (also I have ways to link up the subjects quite nicely in terms of the flow of the writing and the way it reads). The plan will be to go into these topics in detail in the coming weeks in the order they are listed in today and how to potentially overcome and work around the obstacles that have been put in front of us through misfortune or chance.

Independent Living

When I say independent living, I am speaking in the broadest possible context. Independence can only be defined, interpreted and achieved to the extent that our brain injuries and the subsequent disabilities we suffer from allow us to. Whether we are able to live alone and manage all the complexities with it; complexities such as housing contracts, sorting out direct debits for paying the rent & bills, or paying for insurance and council tax. I myself did not realise the extent of the complexities and technicalities involved in just sorting through the bureaucracy of it all.

Then there are other options such as living with a professional carer, parents, other family members or partners being employed as a carer (for which you can receive a government funded carer’s allowance depending on your income). As well as the carer’s allowance there is also the social housing list and housing benefit depending on the severity of the disability of the disabled person involved and the income of the carer if they are not a professional and are someone like a parent or partner.

Finding Employment

When it is all signed, sealed, delivered, then comes the issue of supporting ourselves financially and accessing the support (both in terms of financial welfare and front line social services. In this section the issue of employment will be particularly important. Finding the right employer, the right type of work for someone in our position, working hours, contracts and unions.

There is also the important issue of not allowing us to be discriminated against by employers. It is unfortunate but it does still happen and in many different ways. The important thing is to recognise when you are being discriminated against and when you are being treated unfairly and how to respond to that situation.

Looking After Myself

Maintaining personal hygiene, eating a healthy diet, regular exercise, cleaning your house or flat, washing your clothes. These are all important things we have to learn to cope with. But there is also the issue of building a social life, socializing with our peers, even forming romantic relationships. It is important to keep an eye on mental health as well as physical. It can be easy to slip into bouts of depression, aggression or mood swings. Here, I am speaking from experience; I know of what I speak.

All of these things come with independent living. Trust me, I have done it on three occasions, I am twenty-six and still living with my mum and dad.

To Have Control Of My Life Back

There are certain consequences of ABI that make life very difficult for me: panic attacks, mental health problems, increased stress, tonic-clonic epileptic seizures to name just a few. What I am going to do is work hard, research and learn as much as I can about my conditions and aspects that may benefit me: diet, exercise, things that may induce a seizure or a panic attack and record what I find. In the next year, I intend to know myself inside and out. So I can begin to take control and move forward.

These are the subjects, in that order, that I will be covering over the next four weeks. So come again next Thursday where I will be talking about independent living, the obstacles that we must overcome and the problems that are presented to us as disabled people. So follow Life After A Brain Injury  get the next update direct to your inbox. For more news and updates, follow me on Twitter. My Twitter handle is @ABIblogger.com. Finally in addition to Twitter, I am just starting an Instagram page which is in its infancy but I would love for you to follow me on there as well, my user name is abi_wordpress_massey

 

 

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

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.

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.

International Day of Persons With Disabilities

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. As a result, I would say that I am disabled. I suffer from a disability. I’m not afraid to say it.

I was the victim of an acquired Brain injury in 2009, which turned my world upside down. Suddenly there were things I could not do any more. Everything was a lot slower. By everything, I do mean everything: cognitive processes thought processes certain physical attributes and most certainly social engagement. Disabilities come in many shapes, sizes and forms affecting many people in many different ways. In America, over the course of a year, statistics suggest approximately two a half million people will suffer from a traumatic brain injury similar to mine and yours with a similar set of consequences that will affect their live forever.

The Nature Of Disabilities & Society’s Expectations

That is often the case with disabilities as a whole. They are devastating, indiscriminate, life changing and, more often than not, permanent. The people that suffer these disabilities have a strength that is so often overlooked by the fully abled. This is not me saying that disabled people do not get the credit they deserve. What I mean with that statement is that people with disabilities go onto achieve incredible things, even with the odds stacked against them. Often, fully abled people (and I used to be one of them, so I know of what I speak) often look at a disabled person and make assumptions, defining them purely on what they see. For example, and I have seen this happen in the street so don’t tell me it doesn’t happen, when a person is in a wheelchair and they are being pushed along in the street by a carer or friend. Somebody who knows the two of them will approach to ask how the disabled person is doing. Instead of asking the disabled person directly, they will ask the person pushing the wheelchair, as if the disabled person is not even there and without considering the nature of the condition that person is suffering from. It is only when the wheelchair-bound person, who is say disabled from the waste down, responds with perfect articulation and diction that the person turns bright red, quickly makes their excuses and leaves.

What Do We Want Out of A Day Like Today?

Now this scenario got me thinking, in fact the subject of this blog post and the process of writing it has got me thinking about disability in a different way. If we are talking about the way that society looks at disabled people, (I feel it is an appropriate time to address this subject with the 3rd of December being International Day of Persons with Disabilities) when we engage with fully able people and the subject about disability comes up, what is it we want to achieve when talking about it?

I can only start by talking about my own experiences and what it is I hope to achieve. Most of the time I try to explain what living with a brain injury is like the main agenda being to get people to understand what it is I deal with on a day-to-day basis. This attempt generally falls flat on its face. I never seem to be able to verbalise what I mean or accurately describe the way that the injury has affected me. In spite of this constant failure I’m going to have one more go as I have always seemed to be able to get things across in writing that I could never dream of doing verbally (even prior to the brain injury). So I will do it in the form of the following analogy: when a computer get older, it starts to slow down. You sit down to use it, use all the programs it has on it CPU. But you notice how slow it is now, some of the programs don’t work the same way and some don’t work at all. You get frustrated at how slow everything is and how the investment you made appears to be falling to bits. You know that with the help of some specialists, overtime, you may see some temporary improvements, but realistically it will never be the same as when you first bought it home from the shop.

Like Different Worlds

The fact of the matter is it will be very difficult for anyone to truly understand what having a brain injury is like unless you’ve actually had one. No fully abled person will truly be able to understand what we have been through in the same way that I cannot understand what other people with more severe disabilities than myself are going through and the difficulties that they have to overcome.

To give a good example, a friend of mine (who I met as a result of my blogging and social media work), as a result of being born prematurely and having her brain starved of oxygen for such a long time, is now living life where she is completely blind and suffers badly from tonic-clonic epileptic seizures. While I can relate and understand the issues regarding the epilepsy, for me to try to relate to and understand what it would be like to be completely blind and live a life without sight is not possible. I cannot possibly imagine what that life is like.

However, despite these handicaps this friend of mine has been accepted onto of course to study psychology through the Open University, with the hope of becoming a neuropsychologist and counselor.

To me, a person overcoming that kind of adversity in life, To not allow something as life changing as the disabilities she contends with on a day-to-day basis define her and determine her future inspires me to carry on working and to persist. She is truly inspiring to me and somebody I feel I can look at as something of a role model due to the adversity she has had to contend with. Because, And I’ve only just realized this when writing this blog post, when I try to look at things from her perspective I realized I cannot even hope to understand what life would be like living without sight. The reason for this is because I’ve never been through it.

What Can We Realistically Hope To Achieve?

I have come to the conclusion that expecting fully abled people to understand the lives and challenges our disabilities present us is perhaps, a little too ambitious. Instead, what we need to be striving for, just like my friend, is to not allow our disabilities to define who we are and what our futures will be. What we should be fighting for and should expect is for people to understand that, while we may have a disability, we are no less capable, motivated, ambitious or intelligent. What we need is to be treated with respect, have access to the same opportunities as those who are fully abled, for our abilities, validity and work ethic to be acknowledged in the same way as anybody else’s. In essence, for us to be treated equally, because there are so many disabled people out there who’ve achieved so much and are capable of achieving so much more.

My final point would be to say that we, disabled people as a whole, also have to acknowledge the things I have listed above: our ability, work ethic and value to ensure we have the confidence, the determination and the belief to achieve all of the things that we want, that we need and most importantly, that we deserve.