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.

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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.

 

 

 

 

SHARE: Getting My Act Back Together

Over the past couple of years, I feel as though I’ve let a lot of things slide. The main focus (with my neuropsych) was really on getting myself to not have such a harsh view of myself, and to lighten up on the “Type A” behavior and mindset. That had its advantages, and I did … Continue reading Getting my act back together

View this blog for more great insights on life with an ABI/TBI, he has a lot of good things to say on the subject of life after a brain injury and the work that goes in to try and regain some balance in life throughout the ongoing recovery process.

via Getting my act back together — Broken Brain – Brilliant Mind

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.

The Importance Of Family

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

What My Family & I Have Learned

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

What Can The Family Provide After An ABI

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

-T. S. Eliot

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

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

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

How Does ABI Fit In To Current UK Society?

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

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

Playing To Win

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

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