Anxiety & Low Self Esteem

Anxiety & Low Self Esteem

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

Is it Nerves or Anxiety?

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

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

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

My Social Anxiety

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

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

Anxiety – Is It A Cyclical Thing?

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

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Epilepsy – A Monster In The Shadows

Epilepsy – A Monster In The Shadows

National Epilepsy Week; a week to raise awareness of epilepsy, steps to take when someone has a seizure and the potential ramifications of regularly occurring seizures and the way that lives can be altered, changed and devastated by the effects of epilepsy as a condition.

I have agonized over this for the last few days, thinking how best to write a piece that would bring attention and raise awareness regarding epilepsy. Equally important, I have wondered how any words that I write down here can have an impact that may contribute to positive change that make day-to-day living with the condition of epilepsy any easier.

I have struggled with the idea of writing a rallying call, a way that if we all contribute we can improve the facilities, work environments and conditions as well as eliminate stigma and the negative connotations that are still attached to epilepsy. However, I came to a decision before I started writing today, that for me to attempt to write something as epic and revolutionary as that between one thousand and one thousand five hundred word in length would be a futile enterprise.

I intend merely to examine the effect of epilepsy on the lives of people and the issues that epilepsy has as a condition that prevent it from being both accommodated for in current society and for people who suffer from the condition to be assisted in their day-to-day lives while out and about.

How It’s Different

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The main issue I see with epilepsy is also a key one in identifying how it differs from other disabilities, neurological ones or otherwise. Specifically what I mean here is that the most prominent effect of the condition, when a person suffers a seizure, is not static. It is different from other disabilities in that sense. For example, with sensory disabilities lets use blindness as an example, it is a static condition; the effects are consistent. The condition very rarely worsens or improves but remains static. I suppose, in that same way disabilities such as paralysis are static and the lives that wheelchair users have to live are similar in the sense that they rarely improve or worsen.

The point I am trying to make by using those two examples is not to try and get into a “who has it worse?” style, slanging match but merely to emphasise where I believe the differences in these disabilities and epilepsy are and I believe it to be very significant.

In the static nature of disabilities such as the examples I gave, blindness and paralysis, there comes with that a consistency. There is a knowledge to both the victim of the disability and just as importantly to the outside world what action can be taken, and should be taken, to aid people who suffer from these disabilities to live as full a life as possible while managing their disability as best they can with the help of family, friends and carers. Many positive actions have been implemented to aid people in wheelchairs such as wheelchair accessible ramps and lifts to aid with staircases, adaptations to public transports such as accessibility ramps that can be lowered as well as sections of buses & trains they can sit in that allow room for their wheelchair with instructions on how and where to sit to keep them as safe as possible. Similarly there are the use of things such as tactile paving, sound based aids at road crossings and improved increased advertising regarding guide dogs to lead the blind.

What I am saying I suppose, is that when a society knows what to do, how to react, how to aid a certain disability and what to expect, it can take steps to ensure the aid and protection of people suffering with those disabilities. When it comes to epilepsy though, to take a quote from the Epilepsy Society’s letter regarding applications for work and welfare, which I will be referring to throughout the remainder of this post:

“Epilepsy is a condition that poses unique challenges to those living with it and should be considered a ‘special case’.”

Epilepsy Society UK

A Special Case

First Aid

 There are many aspects of epilepsy that make it a special case and make it a very challenging issue to deal with in terms of awareness and aids being provided in every day life. Firstly, we as patients have to accept the fact that more often than not, the condition cannot really be explained; why we have it, what caused it and very often what the triggers for a seizure are. This is where that issue of a condition being static comes back into play. When a seizure occurs in a patient it often happens at the most inappropriate time (then again I would say that there isn’t really an appropriate time for one to occur) and that for me, they come very often, out of the blue and with no warning with my seizures lasting a proximately two minutes and normally taking me forty eight hours to recover from (I suffer from full on tonic-clonic seizures).

Though some people do get warnings and know what triggers their seizures, giving them time to either get to a safe position or to avoid certain situations or places that would be likely to induce one. For some, seizures last for only thirty seconds say. Then there are what I have come to call absences (formerly “blips”, something I also suffered from), which are tiny seizures that last for a matter of second, maybe less, so that they are barely noticeable. Sometimes it even takes the patient a long time to realise that these absences of awareness and concentration are in fact mini-epileptic seizures (as was the case with me. It wasn’t until my early/mid-teens that the presence of these absences was realized and diagnosed). The complexity and wide variety of seizure types, triggers and the effects they have on different people are the main obstacles in epilepsy being tackled or brought up within the current disability discourse, as the quote from the Epilepsy Society’s letter below suggests.

“Some people know their seizure triggers, making them easier to avoid. Some get a warning a few seconds or minutes beforehand, allowing them to get to safety before it develops. For most, seizures are unpredictable, a constant fear of what might happen and when.”

Epilepsy Society UK

The point is that epilepsy, as a condition is actually not fully understood, even by professionals. Obviously they know much and can help you to try and manage the condition. But the scale of epilepsy, its seizure types, manifestations and outcomes is so large, ever changing and unpredictable that to be able to aid the people who suffer from it who are walking down the street becomes almost an impossible task. As an example of the way that epilepsy evolves, I have started to have seizures during the night, while I sleep, a particularly dangerous type of epilepsy.

Even the same types of seizure affect different people in different ways and produce hugely different experiences. Another extract from the Epilepsy Society’s letter reiterates and concludes all that I have touched upon in this segment.

“Epilepsy types and seizures vary in different people and can also change over time in an individual. There are over forty different types of seizure and even people with the same seizure type have very different experiences. It is not possible to generalize about the impact of epilepsy.”

Epilepsy Society

How De We Deal With This?

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I have to say that I am not as close to any close answer or solution to tackle the issues that epilepsy presents. The thing that I would say is that if you or someone close to you suffers from epilepsy and seizures continue to occur regularly firstly seek help from a professional. It could be that something as simple as a medication change could solve the issue (as was the case with me. Recently started a regime to change my medication from Sodium Valproate to Levetiracetam and I have not had a seizure for over three months, hooray!). But it could be that the seizures are brought on by the very nature of epilepsy and the things I have discussed above.

The unpredictability of this strange and terrible disability can have huge effects on a person’s confidence and state of mind. Sometimes epilepsy can feel like a monster that is stalking you, ever present in the background, sharpening its claws and waiting to pounce at the most inopportune moment. This feeling can be overwhelming seizures are uncontrolled. The key that I have found, even during those periods where the condition was uncontrolled, is to not let the condition rule me and dictate my life through fear and anxiety. Because epilepsy does produce emotional and psychological effects that cannot be ignored or even acknowledged I would say. I realize that that is all well and good for me to say, but if we allow those feelings of fear and distress to overwhelm us it will only worsen the condition, turning the epilepsy into a cyclical condition. As a final extract from the Epilepsy Society’s letter it explains how that works: “Seizures can be debilitating for the duration and for some time afterwards. Not knowing when a seizure will happen is disabling and can lead to fear, anxiety and isolation.” It then goes on to say that: “People with epilepsy can experience emotional and psychological effects on health. Memory loss, concentration problems, depression and anxiety all impact on seizure control, creating a vicious cycle.”

So, by ensuring that we are taking the correct medication in the correct dosages, with the help and support of family and friends to enable us to live a life where we can socialise, exercise, be creative and boost our confidence, we can contribute to managing epilepsy ourselves. In my opinion, this will be a key aspect to living with epilepsy. All the evidence and everything I have listened to in the discourse surrounding disability in the UK suggests that it will be an impossible thing for society to accommodate for in terms of facilities. We need to make sure that this point is continually raised to ensure that epilepsy is included in discussion surrounding disability and treated as seriously as it deserves to be so that in the future as more is learned about the condition, facilities, services and accommodations can be made and put in place in society.

Thanks for reading everyone. I hope you have found the post to be useful and informative. If you want to read more of my work on ABI, TBI and brain injury awareness follow my blog. Just so people know, another copy of this post can be found on

Headway Worcestershire‘s website as well as plenty of other useful information and inspiring stories regarding brain injury. If you are looking for more information regarding epilepsy, I would start with Epilepsy Action UK and The Epilepsy Society for lots of helpful information on living with and caring for people with epilepsy from two outstanding charities who work tirelessly to help people like you and I. If you want to read more of my work, follow me on Twitter, my handle is @ABIblogger and on my Instagram page where I have now changed my user name to abi_blogger

 

Mental Health: What We’re Dealing With (Part 2)

Mental Health: What We’re Dealing With (Part 2)

Just so that people know, this post is directly following on from last week’s post Mental Health: What We’re Dealing With so if you are just starting to read my blog I would advise you to go back to the last few weeks and my writings (ideally Only lessons, Simplifying ABI Recovery, The Importance Of Family, A Cruel World In The UK. I realise that it is a lot of reading but this post is part of a larger discourse so sorry for that). My main aim of the last month or so is to try and get people to understand how we, the ABI patients, in turn making it easier for people to try and understand what it is we live with in day-to-day life. So here comes part 2.

Affecting All Aspects Of Life

Last week I spoke at great lengths regarding the manner of the changes that happen when a brain has been damaged after something like an ABI or TBI. My aim last week was to try and put those changes that are so hard to put into words into a (potentially) real life, everyday situation that people could relate to. I wanted people to see and understand the confusion that occurs after ABI, the lack of familiarity, the feeling of being out of your comfort zone, and most importantly that these changes are not a gradual decline; these changes are foisted upon you in a life changing instant.

I used memory as a subject because everybody has a memory and certain times when they forget things. Memories are a key part of who we are and it is a good way to expand upon the subject of “What We’re Dealing With” because everyone knows that feeling when you suddenly forget something that you know is important, or that frustrating feeling when you know that you know something but you can’t find it amongst the stores of other memories and information, but at least people without an ABI know it’s there to be found and where to find it.

This is the real issue after an ABI; having to learn again where different information is, finding out what information remains, what abilities you have lost and whether anything that has been lost, damaged or changed can be recovered.

Where Last Week Comes In

Last week I spoke about the brain in terms of an organ and likened it to a house, rooms that have different uses and contain different equipment, tools and information. Each room has a specific purpose and which you go to when a particular need or skill has to be accessed out of necessity and I wanted to show that after an ABI or TBI that the rooms have had items moved or swapped around or even removed entirely. The example I gave last week of making a cup of tea and being unable to find the necessary items to make it because everything had been muddled up.

As I said, I used memory as my example because the feeling is a universal one. All of us at some point have had our memory fail us but with the notion that we have all of other cognitive functions to help us retrieve the memory from a well organized fully functioning brain. But what happens when the rest of the functions AREN’T there to compensate? What if the lapse is not a momentary one, but one you have to fight against for the rest of your life? And it’s affecting many different/all areas of your brain?

Deep Rooted Confusion & Anger

The reason that I chose to use an example that everyone (ABI or no ABI) could relate to was to try and give an people an understanding of the next piece of the puzzle, something that not many people will have gone through. That is a complete questioning of who you are post-injury. The effects of the injury go from things such as what makes us who we are on a social level, the stuff that is closer to the surface such as interests, habits, likes and dislikes and so on. However it also goes far deeper, into both physical psychological issues such as emotional impairments, changes in sexual behaviors, cognitive processes, issues with speech vision and of course, physical disabilities.

Now if you can, imagine my memory example from last week and the type of confusion that would cause and think of dealing with that, alongside the issues (which are just a few ways an ABI can manifest itself) I named in the previous paragraph. All of those functions that we relied on, overnight, no longer work at the speed we want them to, in the way we want them to and in a way that we are familiar with. The point I am trying to make (and I may be making it in a rather blunt and heavy handed fashion so I apologise if that is the case) is that all of these changes are happening simultaneously and we have to find ways to deal with and cope with each individual problem while the others are there just below the surface waiting to trip us up as we go.

All of these changes happening at once lead to a deep-rooted confusion as to who are now compared to who we used to be before our injury. This is the other issue that can be often overlooked; we have a basis for comparison. We can look at ourselves before the brain injury and compare who we are now to that previous version of ourselves – the fully functioning person that did not have to deal with or think about any of these problems. For me this caused a huge amount of resentment and anger towards both the person who had inflicted my injury upon me, towards the world and its injustices in general and worst of all resentment towards myself. I resented who I was, what I had become, the unfairness that my livelihood had been taken away and at the time, the early stages of recovery, I thought this was who I was, who I would be for the rest of my days. Alongside these feelings of anger and confusion there are a whole plethora of other emotions and states of mind that came with them: loneliness, fear, nervousness, anxiety (there are many more) all about who I was now compared to who I used to be and how I had changed. When I was around people I used to ask myself: “I know I’ve changed and that I’m different, so they must know it too. What if they hate me? What if they think I’m stupid? What if they don’t love me or don’t want me anymore?”

Looking To The Future

After an ABI very rarely is there a cause for hope straight away. I personally found it extremely difficult to look beyond the moment I was in, the day I was living and experiencing. Basically what we’re dealing with after an a brain injury is a monumental, internal change both mental and physical. In the early stages as you come to terms with the types of changes I have talked about, you realise that the life you led previously is gone and you spend a lot of your days just existing, making it through the day while wallowing in and mourning your losses. However, I need to emphasise that there is a cause for hope. These last two posts have not been the most positive or uplifting ones, I am aware of that. That was not their purpose. The purpose of the last two posts has been to try and help people understand the turmoil and chaos going on inside the brains of ABI patients in the hope that I can, over the next weeks/month post useful information that can help overcome the disorder and internal conflict that can so often boil over over and spill out into the real world. I want to try and help anyone who is reading my blog to try and see that there is a future out there for you and I’m going to try and help you reach for that future and it’s successes and options so you can grab it with both hands.

Mental Health: What We’re Dealing With

Mental Health: What We’re Dealing With

Over the last four weeks, barring any reposts I simply saw as supplying useful information, my posts (Only lessons, Simplifying ABI Recovery, The Importance Of Family & A Cruel World In The UK) have intended to be a sort of guide to steering clear of and warning you of negative influences, environments and the potential negative outcomes of certain ways of thinking. The aim, trying to create something of a guide to controlling aspects of life after an ABI and if you are a patient protecting yourself or protecting the patient if you are a carer from the steep slope that is mental health problems that often manifest themselves during the recovery process.

Things like depression or anxiety, both of which are devastating mental health issues that are taken far too lightly in today’s society, can have catastrophic consequences for anyone let alone for patients post-ABI. In my previous posts I have talked about environment within the home and the exterior influences that can contribute to mental health issues. Over the next few weeks I will be talking about other contributory factors that can supply mental health issues with the fuel they need to really gain momentum. Today’s post will be giving focus to the way an ABI feels for a person who has just suffered one (or how I felt when I first came to and was discharged from hospital) and how that can feel.

This, for me was one of the biggest factors that contributed to issues with depression and anxiety, though it is more of a long term one. After a severe brain injury everything is different. I have tried hard the last few weeks to think of an appropriate metaphor or simile to communicate what living with an ABI is like for people who don’t have one and this is the best I could come up with, so please hear me out.

How Best To Describe Having An ABI To Those Who Don’t: “The House Simile”

Before the injury, your brain is like your house. You know where everything is, every room has its uses and within those rooms there are things that you use, let’s say the kitchen for example. Within the kitchen there is a fridge, a cooker, a sink and all the usual equipment needed for everyday use. But also, there are cupboards that have designated uses: cupboards containing food, drink, pots and pans. Then there are the draws that contain knives, forks, spoons, and chopping boards, also essential equipment but kept separate. Then there is a cupboard that contains things that we don’t use very often; the pasta maker your aunt brought back from Italy as a gift, the super shredder cheese grater bought on a whim and so on, rarely used but still kept in storage for if it is ever needed.

What I am saying is that that the brain is almost compartmentalized: each section (or room for the sake of my simplistic simile) has different places where different things are kept so we can find, retrieve and use them whenever we need to.

Now, imagine that you wake up one morning and enter your kitchen. You go to make yourself a cup of tea with the plan of watching some TV and having a sit down, relaxing for a while. You go to the cupboard to get a cup but upon opening that cupboard instead of cups, you find a pile of papers that are normally kept in the desk draw upstairs in your office. You look through the papers, rummaging until finally at the back of the top shelf you find a chipped, cracked old mug. Once you’ve found the mug, you open the box of tea bags to find it is empty so you struggle through different storage compartments of the kitchen until you find them. Then there is the process of boiling the water, the process seems to take longer than usual, frustratingly longer in fact but the kettle eventually whistles and you make your tea. You normally take sugar but you have abandoned that for now because of the way that your house, with its usual familiarity, set out in a way you know has been so unceremoniously changed and rearranged. You go to the lounge and the sofa has been removed, your bed has been left in its place…

You see what I mean? Imagine if that scenario occurred in real life, most of the rooms and their contents had been swapped around and rearranged. How long would it take you to return all the things to exactly the same place they were before? Not a close position, the EXACT position, it is an impossibility. Imagine in five years time, even when you had returned everything as close to it’s original place as you could, that you were still finding/not finding items that were/weren’t there yesterday, that you had used yesterday but now you cannot find again.

That is the best way I can describe having an ABI to anyone who doesn’t have one. I worked a long time on that simile and I hope that it has made things easier to understand and enabled those without an ABI to see it from a patient’s perspective. As the title suggests, that is what we live with everyday. A lack of familiarity with how our brain works since the injury. If we were to take an example from my own life, the place where I keep certain memories has been damaged. When someone asks me to recall a certain situation, I flick through the memory bank like it’s an old photo album, only to find that some of the pictures that captured precious memories have been removed. “No I don’t remember that occasion” is the response I give. I get a quizzical look from that person that clearly implies a response of stupidity or indifference on my part when really it is just a lack of information on the part of the person asking the question, if you see what I mean?

That Is What We Live With

Each day we, people with ABI’s/TBI’s of all sorts, try to get up and handle the manifestations of our injuries and we do the best we can. It is often forgotten, ignored or simply unknown by some people that these are the type of issues we are dealing with; trying to retrieve information that camouflages itself inside the different compartments of the brain or that has left it completely. During recovery, especially during the early stages of the process, the first day you go downstairs to find that everything has been changed, moved, replaced or removed, the anger, the frustration, the lack of understanding and confusion as to why your brain isn’t working properly is ferocious. I would say though that it takes a while before you’re even aware of the changes. In the first six month of my time at home it was like I was just floating through life in my own little bubble. Totally unaware of myself, the way I was talking, acting or moving. I was totally unaware of other people, their needs or any social codes or conventions. Eventually though, as I said, probably about six months after I arrived home I slowly started to become aware of myself and of the presence of others.

What Is My Point?

The purpose of this post is to help people to understand what it is that they are dealing with and the thought processes and the way the brain changes after something as traumatic as a brain injury. I wanted to try and tell you as accurately as I can what life is like dealing with an injury so that if you are a carer, you can get some kind of insight into how we are feeling and if you are a patient, maybe put how you feel into words a little more accurately than you could have done before. I hope I have managed to do that. As a final point, I would also add that this idea of unfamiliarity, this feeling of isolation,the frustration the anger, the confusion, all of it are the thing that contribute to mental health issues gaining momentum. I believe that if people understand something they are much better prepared to tackle the issue and hopefully find a solution. So I hope that my insights can provide you with some clarity, some idea of what living with a brain injury is like.

Thanks for reading and I hope you keep coming back. Please, join my mailing list here on WordPress and take a look at my Twitter page @ABIblogger for updates on my blogging/writing work and take a look at my Instagram page abi_wordpress_massey on ABI awareness. Thanks again for reading.

 

 

 

 

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.

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.

A New Year – Self-Assessment

Well, as I said in my final Monday post, I would be hoping to make some changes to the writing style of the blog to make it more digestible for you, the readers. So here it is, me not trying to be academic, but simply speaking from the heart and also from the mind on my experiences of suffering from an Acquired Brain Injury and how that affects me as I try to pursue goals from the (seemingly) simplest (remembering chores), to the more difficult (finding and keeping long-term employment).

A Brief Introduction – An Optimistic Outlook On The New Year

I have entered 2016 in a very positive frame of mind. There are lots of things I am enjoying (the blog), lots of things I am looking forward to (the start of other writing projects that have been on the shelf for quite a while if I’m honest) and also the knowledge that I am moving forward in the ongoing process of recovery (something that is a never ending process, in my opinion). I have an idea of where these roads are going to take me, the problem with life, as a whole is that a lot of the time things happen, opportunities and chances come up when you least expect them.

The thing is though, that I am one of those people that need a plan. That is what gives me the motivation to carry on every day when, as a lot of you know, some days you really don’t want to. So I have a set of ideas and goals, basically a rough plan of what I want to achieve in the upcoming year. It is my intention to share with you exactly what it is I am doing to achieve those aims and the obstacles my brain injury throws at me as I go. I will also share with you the equally important issue of the different methods I am using to try and overcome the consequences of my ABI (I will be trying some different stuff so stay tuned because it could get interesting).

The Nature Of Self-Assessment

Analyzing ones self can be a difficult thing to do for anyone, regardless of whether you have had a brain injury or not. It requires total and sometimes brutal honesty as well as time, taking the time to ensure we really look at ourselves. When we engage with this process it can be extremely disconcerting. As I say that is not just for those of us with a brain injury that is for all of us.

Whoever we are, when we really take the time to look at ourselves, we will always find something that perhaps we must acknowledge about ourselves, something new we didn’t know before, something we don’t like and wish we could change. However, the type of self-assessment I want to discuss is the type where we can glean positive results. This is where I get more specific and focus on engaging with this process with a brain injury.

Assessing Yourself After A Brain Injury

Really looking at yourself and analyzing who you are post-ABI can be a really horrible experience. This process means truly seeing who you are now. It is about recognizing the losses you have suffered, the difficulties you have, the things you cannot do anymore and putting the emotional reactions that are triggered as a result to one side. Accepting your disability and its limitations is the key to moving forward.

That may seem like cheap words coming from the outside but it is true. In previous posts, particularly ones that I made last year, I tried to place an emphasis on the fact that life shouldn’t stop for us because we have suffered something as terrible as a brain injury. While this is absolutely true, it also must be stated that the world outside does not stop for us because we have suffered a brain injury.

Identifying Key Moments For What They Are

Don’t get me wrong, it took time for me to get to a stage where I was ready to really look at myself and accept the changes that I had undergone (around four and a half years to be exact). It is a process that does take time and a process that will be undertaken at the convenience and length of time the patient sees fit. It is a process that certainly should not be rushed. To be honest, it does not happen in a single moment of clarity (or at least it didn’t for me). After a certain amount of time I just get tired of fighting the same uphill battles that I had been fighting for so long that eventually, you just have to say “No. I am not going to put myself through this again.” And you don’t. It is strange but there are a series of moments that ultimately prove things that you have known about yourself (as an ABI patient) all along, you just weren’t willing to accept them. You were happy to keep swimming against the tide (that’s how it was for me anyway). The key is to recognize those moments for what they are: moments that will inform the way you live the rest of your life.

As A Result…

When these moments occur, when we accept these limitations we are then, believe it or not, in something of an advantageous position. We can then avoid spending our time banging our head against the wall working towards goals that are made difficult because of the consequences of the injury. Instead we can spend time working towards goals that use the strengths that remain within us post-ABI (and don’t say you don’t have any because you do) while devising strategies to compensate fro the weaknesses we have.

Sooner or later we will have to look at ourselves, assess where we are struggling, what the real consequences of the injury have been, finally and most importantly, how can we work to improve our situation, improve how our brain function and find ways to compensate for our deficiencies that work for us as individuals. The sooner we can identify and come to terms with our own issues, the sooner we can find ways to seek improvement and move toward the goal of long-term improvement.

 

Thanks for reading. I hope the changes I have made have been acceptable to you. Feel free to leave any feedback on the comments section or if you want to get in touch follow me on Twitter. I’m @ABIblogger or follow me here on WordPress. Thanks again!