In my last post regarding the International Day of Peoples with Disabilities, I was trying to make it clear that for anyone who doesn’t struggle with the same type of lifelong condition such as an ABI, in other words are fully able, it must be extremely difficult to find the right way to communicate with us, the disabled. In the same post, I went on to say that those who have not experienced the type of life changing adjustment that comes with acquiring a disability, must have an impossible job in terms of trying to understand the experiences we go through and have been through as you have not experienced this type of monumental change. I have considered these two points over the last week and as such the final carriage in my train of thought is this: if we, brain injury patients, are suffering with problems, fears and issues that our fully abled friends and family members cannot possibly hope to understand, how do we expect to be able to communicate and engage with them in a way where we treated with respect, courtesy and dignity?
Communication & Staying Informed
The biggest problem that is undoubtedly a cause of of the issues regarding communication, especially in the home environment, comes from the nature of brain injuries themselves, in that they are something of an unknown entity. Having spoken to my parents and other family members, they tell me that after I had my surgery and had been placed in an induced coma, they did not know how much of the old me they would be getting back if and when I regained consciousness. Until that time they had had no experience in dealing with such a situation and were unaware of some the potential consequences I could suffer from.
The effects of a brain injury are so varied, far-reaching, and surprising. So much so, that quite often, even the specialist doctors who treat patients are unwilling to commit themselves in terms of predicting any kind of potential recovery. Any kind of rehabilitation that is laid out comes in the form of a reactive approach, a type of “let’s wait and see” methodology.
When I was discharged from hospital after my injury, my parents had spent much of their time at the facility being informed of the impressive progress I had been making. My family was incredibly optimistic in terms of the feedback they had received from staff members who told them of positive signs I was showing and what that that would mean for my recovery. My family genuinely believed that when I returned home, after a period of months, I would be my regular self again and that the injury would have no real long lasting effect.
It did seem as though, upon my release from hospital, there was a significant breakdown in communication between the doctors and my family. During the discharge meeting my parents were informed about the significant physical problems that definitely would affect me in the future: permanent deafness and tinnitus in my left ear, losing my sense of taste and smell, as well as a residual squint and diplopia in my left eye. However, all issues regarding memory, cognitive processes, thought processes and speed of brain function were barely mentioned. It was not until a year after I left the hospital my parents were even made aware of the extent of the skull fracture I suffered, when my father asked to see a copy of my head x-ray.
Left In The Dark
This breakdown in communication regarding my actual brain function had a very large effect on the way that I engaged with my parents at home. This was mostly because of the fact that when I returned home, my parents believe that it was merely a matter of time before I returned to my old self. As such, my parents encouraged me to do different things in terms of trying to get out and about, trying to challenge me, perhaps in ways that were more than I could handle at the time. After a while it became clear that these tasks were, in fact, too much for me to handle. If you were to place me in the context of a fully abled person, particularly emotionally, the way I reacted to small failures were hugely over-emotional. I was getting frustrated that I could not do things that had previously come naturally to me and I was also struggling to come to terms with the physical handicaps regarding my senses (in particular the issues with my sight).
After a few months, it became more apparent to my parents that leaving the house and going out in public would be more of an issue than they had anticipated. Even though my memory of the year following my injury is not the best, I certainly remember that when we did go out both my mum and dad had a tendency to be more controlling and overbearing than they were previously. Something my mother confesses to still having a habit of doing when we are out together now. This over protective nature can become frustrating and feel very patronizing, particularly in the immediate aftermath of a brain injury when you are still becoming accustomed to a new way of life and new limitations that have been placed upon you and you have not come to terms with those changes yet.
What we must remember, if you feel you are being treated in that way, the people who doing it are certainly not intending to patronize you. It does come from a place of genuine concern and love. The best way to solve this problem is to try your best to communicate with that person and tell them exactly how you feel.
The Memory Of The Old You
One of the things I would also consider a contributing factor to the change in the way you are treated is the inevitable change within you that comes with a brain injury. Before a brain injury, we were living normal lives, going to work, going to school and socializing with friends in our spare time. The people we have engaged with while we have been doing all of these everyday things have created an image, an expectation of who we are and how we should behave.
As a result of the brain injury we suffered, our ability to do certain things, to behave in a certain way, essentially our ability to live up to the expectation we have created in our previous life as a fully abled person has been removed. This change unfortunately makes people extremely uncomfortable, nervous and highlights their insecurities and lack of knowledge.
These people are aware of our situation, they remember the person that they had known previously and they also know that this person will have undergone a change in the way that they act and the way that they function. Most ordinary people actually, aside from the severity of the situation regarding an ABI, know very little about brain injuries and what suffering a brain injury actually means. Because of the severity that associated with ABIs, people feel that they need to treat persons differently after their brain injury, because they are now different people.
In reality, what brain injury patients need is for people to acknowledge that they have suffered a life-changing trauma and for people to just be a little more patient with them and to accept that they are facing challenges every single day that they have never faced before. What we do not need is to be patronized, belittled or defined by our injury. What we want is to be treated in the same ways we have been previously, for who we are as people.
Communication Between Parties
I can only say that after your injury, if you feeling patronized, treated like a child or undermined, the only way to address those issues is to calmly and carefully talk to and communicate your feelings with the people you feel are treating you this way. I can honestly say that if you get your point across to them in a way that they understand and that they can relate to, the vast majority of people will do their best to adjust their behaviour and think a little more carefully about what they are saying and how their words can be interpreted.
About the author
My life was changed for ever on the 30th of August 2009 when an attack on a night out left me with sever brain injuries. I was left in an induced coma after suffering fractures to the skull, bleeds on the brain, as well as severe bruising to the frontal lobes. Since the injury I have found it hard to find and keep work, to maintain relationships, and generally stay positive. I have decided to share all of my journey with you, in the hope we can bring brain injury awareness to the level it should be at. Please, follow my own WordPress blog Life After Brain Injury to keep up to date with my brain injury journey! Follow me on Twitter: @ABIBlogger
Tom Massey, ABI Blogger