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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Our Approach…

My name is Tom, I am 25 years old and I am the survivor of an Acquired Brain Injury. Getting settled in at home is an important part of leaving hospital after suffering a brain injury. As I said in the last post, comfort, consistency in the environment the patient is in plays a vital part to any recovery attempt that is being made. However, there are different approaches to the recovery and each different approach has its own positives and negatives. I am going to talk through some of the approaches I went through in the hope you will see what could be gained from it.

The “Military” Approach

I will start off by talking about what it was we chose to avoid. After a brain injury, a patient will most likely be suffering from impaired cognitive function. There are different ways to approach this and one of those ways is to have repetitive, regimented, practice over and over, until those cognitive functions return to (not full which is nearly impossible after a severe brain injury) an improved capacity.

After my parents did some research, we chose to avoid the strict, regimented, routine. They found that many of the patients suffered greatly both in terms of their self-confidence: due to a continued attempt to do something that they simply could not do any more. It is bad enough to realise that you can not do certain things you used to be able to do perfectly well, but it must be even worse to be forced to attempt that thing over and over again even though you can’t do it. It must bring so much anger, sadness, frustration, not to mention resentment towards those that are trying to impose this “military-esque” (for lack of a better term) approach to trying to do something almost impossible: return a patient to the same state they were in pre-brain injury.

The second aspect where the regimented routine could cause difficulties was simply in the dynamic between carer and patient. Now this is definitely linked to the first issue and to comments I have made in earlier posts. It is crucial to maintain a good relationship between patient and carer. If the patient is under pressure and being forced to attempt things that are simply beyond them, they will begin to think that there is something they are doing wrong. It is essential that in the approach to the recovery, the carer should not necessarily understand (understanding a brain injury is pretty much impossible unless you have been through it) but empathise with the patient. It is critical that you do not make them feel as though it their fault, that you are angry or frustrated with them. For any carers out there, positive reinforcement and attempting to instill confidence in the patient as they approach, even, what may seem like a fairly routine activity is important to building up confidence so that they can move on to more ambitious tasks further down the road of recovery.

What We Did: Our ABI Recovery Approach

There were certain things that I had to do in my recovery for very specific and important reasons. I had to keep up with basic mental exercises (i.e. Sudoku puzzles, word searches, cross words, spot the difference etc.) to try and improve my cognitive function. I also had to do physical exercise as well, however I was slightly limited in this, as I had always enjoyed contact sports, which were then impossible due to my fragile skull (they are not impossible now but still have an element of risk to them). One of the things I really did do was eat. I ate a lot. I had lost 4 Stone (64 lb.’s) while in hospital so I needed to put some weight back on to make me a touch healthier.

These were certain things that I had to adhere to. However my parents had been doing their research on how to approach this kind of thing, we decided to go in the opposite direction of the type of the recovery mentioned on the first page of this entry. We decided to use a method of very basic routine. Times I got up, times I ate meals, times I would walk into town were all relatively routine and at specific times of the day. It was my spare time that was for me to decide. It was basically a way for me to use my spare time in a way that benefitted me most at that time, on that day. If I needed to sleep, I would sleep. If I needed a snack, I would have a snack. If I wanted to get out of the house, I would go out.

Having spoken to my parents about this though, I cannot truthfully tell you that this was some ingenious or innovative approach to tackling the aftermath of an ABI. It seems to me as though this approach was both as a result of not really being given that much information from Brain Injury Services where we lived, meaning we were left in the dark somewhat. I also have heard her say that this liberal approach to my recovery was something of an attempt to deny the truth. My mum has said to me that she thought when I came home from hospital everything would, after a while, go back to normal. To try and keep things going as normal seems to have been an attempt to deny the truth its inevitable victory. I think that there is, especially around where I live, a lack of support and assessment for carers (and brain injury services as a whole if you ask me!). I cannot say what those services are like in other areas of the country but here, we were somewhat left in the dark, to figure it out ourselves. I would be very surprised if it is not a similar case all over the country due to the enigmatic nature of ABI’s. It seems you can never really tell what will be permanent and what won’t, what will improve and what won’t, if you will be able to do certain things again or whether you won’t. So it may be that in approaching an ABI recovery for any carers out there, you may be left to fend for yourselves and figure out what is best for the patient. This can obviously work out well in some ways as you know the patient better than a doctor or a psychologist. It is about finding the balance; knowing when the doctor is telling you something that is very important that must be done, and even then, if there is a way you can approach that task that will ultimately suit the patient better than the way a doctor has suggested then try it your way as well. You need to be willing to think outside the box to get the best possible results for the patient.

If I were to be asked, “what is the best approach to a full recovery?” I would have to say that my answer would be that there is no full recovery, that’s how I would start anyway. What I would go on to say is that the path towards recovery is dependent on the individual; their strengths, weaknesses, likes, dislikes, their mental toughness and determination all play a significant part. The best approach would be to try and tailor the recovery towards the patient and what works for them. But one of the key aspects I would say to any carers out there would be to use your common sense and try to empathise with the patient as much as possible. Put yourself in the patients shoes, think of what they have lost, what they are coming to terms with, and what it would be like for your brain to be working fine one day, and then at ½ speed the next. The best advice I can give to any people looking after an ABI patient out there is to put yourself in their shoes and remember everything that happens along the way. Treat any difficulties or mistakes as a learning experience, not as a failure. Learn, adapt and adjust for the benefit of the patient.

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Coming out of the Induced Coma, Post-traumatic Amnesia and the immediate aftermath of an ABI…

My Name is Tom and I am the survivor of an ABI. I have covered all the basic medical, science type stuff that will hopefully provide you some with knowledge as to why I suffered from the after effects that I did. You will hopefully notice a change in the tone of my writing as I am no longer repeating facts I have found out from a book, my medical notes or the www, I am speaking from the heart. What I aim to do now is get on with telling you my story and about my experiences, in other words the more useful stuff.

Anyway, where were we? Right, I had come out of surgery; I was hanging on to life by my fingernails and had been placed in an induced coma to allow my brain time to rest following the injury. A section of my skull had been removed to reduce my high level of ICP and was being carefully stored beneath the skin of my stomach to ensure it had the blood supply it required to stay alive. My family was in bits (just as much as my skull was) and nobody knew what was going to happen next.

I had been in the coma for only a few days with my ICP dropping steadily over that period until it stabilized. Doctor’s were astounded at how quickly this was happening. A patient coming in to the hospital with the injuries I had suffered, with a Glasgow Coma Scale score of 3 and recovering at this speed was unprecedented. Such was the rapidity of my recovery that they attempted to bring me out of the coma on the fifth day. However, a severe case of projectile vomiting during this attempt discouraged them. The risk of me choking on the vomit was too great, apparently (not because they were afraid of getting covered in sick). So I was sedated and sent back to my local hospital in Dorset within a few days.

Here, the attempts to bring me round would continue. My mother says how much of a struggle the whole thing was. I did not know what was happening or where I was. I was confused and distressed at the situation. I would thrash around as they tried to wake me up, I was pulling out tubes and pipes, and lashing out (I even pulled out my catheter the second time they tried to bring me round. For anyone that doesn’t know, a catheter is the pipe that goes up your urethra so you can pee!). It was about ten days after I had been put in the coma that I finally was brought out of it. I was awake! I was Awake but I was certainly not myself. I’ve been told I could recognize people and occasionally acknowledge their presence, but I was aware of little to nothing that was going on around me.

The truth was that I was suffering from Post-traumatic Amnesia. PTA is a state of disorientation and confusion that occurs after a massive head trauma that causes a patient to forget events that have happened after the injury. If I were to say anything to the families of people with PTA, it is that it will pass. From our experience as a family, we found that the presence of people that the patient knows and recognised was helpful, as was the presence of memory cues posted on the walls of my room (telling me basic information such as where I was, time of day, days of the week etc.). Honestly, from our experience, the sound of a parent’s voice and their presence was invaluable. It may not be medical fact that we are working from, but it can only do a patient good to hear a voice of comfort when they are in such a distressing situation, surely? It’s difficult to put into words,I think this part is somewhere between human instinct, in the way the patient recognises the voice of a parent, a partner, or sibling, and empathising  with the patient. Wouldn’t you want people there for you, in that situation, talking to you and telling you it would be ok?

The reality is, with PTA, that after a head injury, the short-term memory in the brain is not being processed into long-term memory. Think of it this way, if I may give a simple example. You have your lunch, say a cheese sandwich, normally this will go into the short term memory before being processed and placed in the appropriate drawer of the filing cabinet to be retrieved and looked at a few hours later. In the case of PTA, the piece of information is not being transferred from the short -term memory to the long-term memory; hence it cannot be retrieved and looked at later on. To help with this process my parents had pictures, written memory cues and so on, posted all over my room.

During this stage, the only advice I can really give anyone is to be there as much as possible, to talk to the patient and give gentle reminders while being patient. It’s perhaps better also if the carer or family can perform the memory tests on the patient (which is essentially the patient being presented with sheets of pictures or to countdown from twenty backwards). The reason I say this, is that a carer or family member who is around the patient for long periods of time is more likely to spot periods of time where doing the test is best for the patient (when they aren’t tired, when they haven’t just woken up etc.) as opposed to when it is better for the doctors/nurses. What we found, essentially, is that the presence of family or carers is so important!

The last of the pseudo-science…

My Name is Tom and I am the survivor of an ABI.

In the last post, I covered the injuries to the brain that I suffered (as I understand them in layman’s terms). In this post, I will be looking at the different sections of the brain, what they do (again, as I understand it), and that will lead us on to the next few weeks where I will discuss the problems I had when waking from my induced coma. Trust me, I am doing my best to get away from the medical stuff, the neurology, and move quickly on to my experiences and the real meat of this blog.

From the research I did through my medical notes, it seems that most of the damage was done to the temporal lobe, the occipital lobe, and some minor damage to the frontal lobes (and I’m sure other places suffered some minor damage due to the midline shift/increased ICP). Now, finding out the function of the different parts (or lobes) of the brain has been interesting to me as it has allowed me to put the after effects I still suffer from in some kind of context. I had done little to no research prior to this blog on what effect the damage to different parts of my brain has had on me. It is much easier to not address it: to live in denial of something is a lot easier than accepting it and taking steps to address and overcome it. After all, it is only really in the last year to eighteen months where I have started to truly accept my ABI and what it has done to me.

Now, the different lobes of the brain and what they do. This is how I understand it and the picture below should give some clarity on the locations of the different lobes.

Colour coded and labelled picture indicating the different lobes of the human brain.
Colour coded and labelled picture indicating the different lobes of the human brain.

The main section of the brain is called the cerebrum and provides the tools for thinking that we use in every day life. It is divided into right and left hemispheres: The left hemisphere is responsible for the logical side of thinking, numbers, words, lists, logic, sequence, linearity etc. and controls the right side of your body. Whereas the right hemisphere controls the left side of your body and is responsible for the more creative endeavors such as rhythm, spatial awareness, colour, imagination and daydreaming. The cerebrum is then split into four different lobes, each of which has a different function.

  1. The Frontal Lobe – The frontal lobe controls so many different aspects of what we do and what our brain does. To include just a few, it controls creative thought, problem solving, intellect, judgement, behaviour, attention, physical reactions, muscle movements, smell and personality.
  2. The Parietal Lobe – The Parietal Lobe mainly focuses on comprehension, monitoring things such as language, reading, visual functions, internal stimuli and sensory comprehension. It is also home to the Sensory Cortex and the Motor Cortex. The Sensory Cortex receives information from the spinal cord regarding the position of our many body parts and how we are moving those body parts. The Motor Cortex helps to check and control the movement of the body.
  3. The Temporal Lobe – The Temporal Lobe controls our visual and audio memories. Located here are sections that help us with speech and language as well as hearing. It also has an effect on some of our behavioural factors. The Temporal Lobe also houses Wernicke’s Area. Little is known about this area by even the best doctors but it is known to help us formulate/understand speech.
  4. The Occipital Lobe – located at the back of the head, it helps to control vision. The Occipital Lobe also houses Broca’s Area, the area of the brain that controls the facial neurons as well as our understanding of speech and language.

So theses are the four main lobes of the brain. I promise you, that that should be that on the science jargon. But I felt it to be important to include some of the scientific/neurology stuff as it places my future experiences in a proper context. So I hope to see you here again. Would love it if I could get a few more followers on Twitter (follow me @ABIblogger) and maybe follow my blog while you’re here. I assure you I am doing this with the main aim of helping people. Any feedback I can get would be amazing! Thank you so much everyone. Stay strong!