My name is Tom Massey; I am 26 years old and a survivor of an Acquired Brain Injury. So far I have posted a lot on my own experiences of living with the after effects of an Acquired Brain Injury and what I have learnt about society and myself in general. This post will take a different turn. Over the next few posts I will be looking at how we can obtain information, the nature of the information we receive as standard and how that can help us deal with those after effects and hopefully enable us to take a pro-active approach towards our recovery. These posts will look at what we are told by doctors and how the nature of ABI’s can restrict and dictate the type of knowledge that is passed on to us.
Much of this information I will be passing on is knowledge that has taken me nearly six years to acquire. To start off, I believe that as human beings, there is something almost instinctive about the way we react when a loved one is in danger or is struggling. We want to help them. We want to obtain the appropriate knowledge to be able to make their life easier, to improve their situation. Such is the nature of people that we also want that information now, we want it instantly because we do not want to see that person go through any more hurt than they have to. We want to provide a solution that will save them from physical or emotional harm. In essence I believe that we are problem solvers.
The Information & Advice We Are Given
I have been visiting neurologists and consultants, at least once every year, since I suffered from my ABI. The first time we visited my neurologist I was in the worst condition you would think possible. I had lost a huge amount of weight, my cognitive abilities were at their slowest and my senses (sight, hearing, smell etc.) had been drastically affected by my injury. I do not remember much of what was discussed really at this meeting, all I can remember is my parents asking lots of questions; craving the information that could fix the problem, that could fix me. We were given the task of ensuring that I followed the instructions and exercises set by my occupational therapist, try and get some physical conditioning back and to gain some weight. We were then booked back in for an appointment in a year’s time, to check on my progress. “Let’s see where we are in a years time after we’ve reached these goals,” he said.
Pro-Active vs. Reactive
The conclusion of this meeting was fairly reasonable at that time given my condition. Six years later, I realise that the advice I am being given in my annual appointments is very similar to that first appointment: setting goals (admittedly the goals became more ambitious as years went by) and then seeing where we are in a years time: an approach of play it by ear. The advice tends to be reactive in nature (as in waiting for things to happen, see how they go and then reacting to it) and tends to produce results in the long term.
This can be very frustrating for patients when all we want are answers, something that will produce tangible results of improvement in a short space of time, tying in to what I said about the inherent human desire to solve problems. However, I am of the opinion that we can’t place the blame on doctors for approaching methods of recovery in a cautious way. Doctors dealing with brain injuries essentially have their hands tied by the nature of the injury they are dealing with; by the nature of the beast, if you will.
A DIFFERENT TYPE OF ANIMAL
Illness is a difficult thing to deal with. Regardless of the type of illness it is always a disruption to life. Whether it is merely a case of having the flu and having to take a few days off work, or whether it is something life threatening like cancer, an illness where you take months off work to receive treatment. Illnesses such as those range from being inconvenient and a pain, to devastating the lives of families. From a medical perspective, I believe that a brain injury is a different entity. Now I must clarify when I say “different” I DO NOT MEAN WORSE, just different. They are different in the way you approach them, they are different in the way you treat them and they are different in terms of the aftermath.
The reason I say this, is because illnesses such as those I have mentioned, ones such as Cancer, they have a set of symptoms, a time line, and a way to treat those symptoms. That type of illness has a cure, the illness can be explained in terms of what is happening within the patient’s body in a very specific way and a doctor can explain to them a strategy as to what they are going to do and how the cure they are providing is going to fight the illness, once again, in a very specific way.
The Nature Of The Beast
The nature of a brain injury is quite different. Brain injury doctors do not deal in specifics. I have an appointment with my neurologist once, maybe twice a year. In those appointments, we discuss potential targets for the forthcoming year and any issues concerning me. There is very little that neurologists and other specialists in that area can give you in the way of specifics and more importantly help in gaining solutions to the problems that you want to solve. The reason behind that is a simple one in my opinion, it is due to the incredibly complex nature of the brain itself.
The key factor though and, in my opinion, the most influential reason behind this reactive approach: all brain injuries are different. It is impossible for a neurologist or consultant to predict what a patient is going to be like post-ABI: what they will struggle with, what they will find manageable, how they will react in social situations, how they are with problem solving and so on. While the body heals itself in a fairly short space of time; take me for example, the skull fractures I suffered from have long healed, as have the effects of the operations I underwent, and much of my sensory function has returned after a period of years. The issue with a brain injury is the healing process taking place in the parts that aren’t visible: the reproduction of brain cells, creating new thought pathways, and the brain generally healing itself is a long-term process that is impossible to predict. So most of the advice you will receive will be tailored to that end, playing the long game as it were.
Are There Other Ways Of Doing It?
There are certainly other ways of approaching the recovery and reparation of the brain but I will say the following: DO NOT IGNORE WHAT YOUR NEUROLOGIST SAYS. He or she after all, is the one with doctorate and after all I have said about reactive advice and approaches, while they are a long-term approach, producing results in the long-term (which can be incredibly frustrating for us patients and those around us), they are effective. What I would say is do not be afraid to experiment with certain things, certain activities or exercises such as going out for lunch or a cup of tea in a local cafe where a patients brain is “forced” (for lack of a better word) to engage and to work. However, these activities should only be done after you have carefully assessed the situation: the wellbeing, mental state and both cognitive and physical abilities of a patient. Also any task undertaken should be small and manageable with a good chance of success (going back to what I have said previously about small targets and building confidence) to help boost confidence and improve self-esteem. While I urge you to follow your doctor’s orders, I definitely benefitted in my recovery from thinking outside the box on occasions (well it was my parents who handled the box thinking duties really, whether inside or outside).
Where Can I Get Other Information?
A lack of information that enables you to get involved, be pro-active and get your hands dirty can be incredibly frustrating. A key part of easing those frustrations is searching for other fountains of knowledge that can help you. My next post on Monday will be talking about some of the organisations and charities and the tremendous work they do in providing opportunities, information and advice to patients, carers and families that can perhaps help you in the recovery process.
I hope that this has been of use to you and along with the next post can help you through what is a very frustrating as well as traumatic experience of trying to get the right information to make your recovery as successful as possible. Please keep reading my experiences and I hope they can be of help to you. Follow me on Twitter, my handle is @ABIblogger to get news of updates and other ABI related bits and pieces I post on there. Thank you for reading and look after yourselves.
Life After A Brain Injury 