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.

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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 – Gradual Gains

The last two weeks I have focused on specific aspects of brain injury recovery and rehabilitation. My last two posts blog posts looking at Health and Independent Living and why they are significant to me and what you, me, all of us with ABI’s, need to consider when approaching those targets.

When I finished my last post on the importance of a good foundation of health, having the conditions we suffer from as a consequence of our injuries under control and as manageable as possible that a thought occurred to me. By putting these posts back to back, one following directly after the other, have I inadvertently sent a message out, that these targets and goals we all have, each individual to us depending on the extent of our injuries and our ambitions in life, should be addressed simultaneously.

This was a thought that I was suddenly worried by. The thing that I cannot stress enough is that each target we have on our list should be addressed slowly and patiently, worked towards with an attitude of gradual gains.

What Are Gradual Gains?

Gradual gains are a method of improving certain aspect of a person’s body. It is an old technique that has been used in sports fitness. It is a fairly simple premise of trying to make small improvements on certain aspects of the body that one knows to need improvement.

If I may give an example, say you are a cyclist trying to improve your fitness. The way to do this is not to do it in a short length of time with highly ambitious goals, saying to your self “I’m going to ride an extra thirty minutes on my bike today.” Something, which will potentially damage your muscles, cause fatigue and soreness, which will then takes a few days to recover from. The best way to obtain lasting improvement is to do the opposite, not to seek ambitious goals from the off. The final destination can be ambitious; in fact I think it should be, as I believe that we are all capable of achieving great things. For the cyclist though what should be the approach to gain long-term improvement is to say you are going to cycle for an extra two minutes and do that for a week. The following week he says I will do an extra three minutes, and do that for a week. The basic idea is to do a tiny but more each time for a week or so, where you don’t feel the difference in terms of the demands it places on you or the consequences when you’ve completed the task. I think the way that we approach our attempts at improvement should be through a series of small improvements over a long period of time.

How I used Gradual Gains In My Recovery (Physical)

This time, I will give an example that is more directly related to ABI patients and how this can work in our favour. When I left hospital and was discharged into my mum and dad’s care, I had been bed ridden for nearly 3 months. I was skin and bone, my muscle mass seemed to have evaporated and I could barely stand, let alone walk. Literally, as soon as I arrived home I was straight through the door and up to my bed where a room specifically for me with a TV and DVD player had been set up where I could sleep and eat and watch TV. That was predominantly what I did for the first few weeks of having arrived home. When I needed to go to the bathroom or have a shower, I would be escorted/supported to the bathroom by my dad, who would wait outside the bathroom until all I was all finished, then he would escort me back to my room.

After a month or so of this, having gained weight and put some muscle back on through the small amount of walking I had been doing pottering around the house, we decided to increase the amount of physical exercise I was doing. So now, each morning I would walk to the bottom of the garden and back and do the same again in the afternoon. Then as things such as balance, muscle mass and confidence improved we could start walking on the pavement up to the bus stop and back. So it continued. It took about six months until I was confident enough to walk to the bus stop, get the bus to town with my mum to have a cup of tea and then come back again.

How I Used Gradual Gains (Cognitive)

The technique that I have used and the example I gave regarded the improvement of my own physical condition. It must be stated though that the exercise can work in a cognitive sense as well (so long as you are rested enough post ABI).

Just as a quick example, if you find yourself getting to a point where you want to start reading again, start reading a simple book, large font, not hugely challenging or stimulating. Using that book start reading say, five pages a day (or another a manageable amount where you don’t feel as though you could sleep for twenty four hours after). Read five pages a day for two weeks. After those two weeks increase the amount of pages you are to read by one or two pages to six or seven pages a day, and do that for two weeks. Continue this process over a period of weeks. But the point is you can take your time with it and not over stimulate yourself. If you feel that the daily target is too much then decrease the amount you are attempting.

This did work for me but it took a long time. It was only when I went to university, around twelve to eighteen months after my ABI that I started this process. Reading had become a necessity, it had really started to become easier due to the fact that I was using this process and had started reading comics & graphic novels as well. So progress is slow with this method but I do believe that it prevents us from overworking ourselves. The fatigue we feel after we have done too much and gained excessive cognitive stimulation is the same as a cyclist that has sore mussels after a particularly long ride; he has tried too much, too fast and his body wasn’t ready.

So, What Is It That I’m Saying?

What I’m saying is, that if you take the two examples I gave, the cyclist and the ABI patient, they are two vastly different examples of people with different aims and ambitions. The point I am trying to make is more regarding the time span of which they intend to achieve their goals. I have said many times in my blog and I’m sure that countless doctors and consultants have told you that the recovery process from an ABI takes time. This was my main fear that was based on the last two posts; I didn’t want anyone reading this to feel as though I was encouraging them to take on too much at the same time. In fact, right now, I want to emphasize the opposite.

Take your time with all the goals you aim for and I would advise, based on my own experiences, to take on one challenge at a time, seeking small improvements over a long period. That way we stop ourselves becoming overwhelmed by fatigue or other issues that may crop up (my epilepsy is a good example there). We need to make sure one thing is secure and under our control before we move on to the next thing. ABI recovery is a step-by-step process, a marathon, not a sprint.

 

Brain Injury Recovery – Independent Living

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

Getting Out On Our Own

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

The Considerations & The Struggles

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

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

Why I Do Not Live Independently

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

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

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

What Did I Learn From My Attempts?

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

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

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

My last Piece Of Advice

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

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