Since the beginning of my recent adventures, I have been involved with two separate organisations: Different Strokes and The Stroke Association, with Different Strokes targeting their support towards younger stroke survivors. It is incredible the work that both these organisations do and I would encourage anyone to read the information about stroke and its effects on people. I have been spending so much time recently reading and researching about the brain, and about what the long term effects of a brain injury can have and I wanted to write down how it has affected me.
I know that I have been so lucky with my recovery and that the power in my arms and legs are ‘normal’ however, I am fully aware that I still have a way to go before I can safely say that I am back to full working order. I would say I have always been accident prone and have always got unexplained bruises however, now I appear to be more so. I am officially clumsy!! being 6 ft 5 has always resulted in gangly arms and problems with access to places but now I have to watch my right leg. It seems to have a mind of its own….. however I am beginning to learn how to position it again and at times, can prove to be quite funny.
My right arm is actually fairly good. My handwriting has always been rubbish so there is no real change and it still looks like a spider has crawled across the page but I do have problems reading it myself sometimes.
I get very tired and my muscles fatigue so quickly but again I am working on it. I went bouldering at my local climbing centre recently and I really could feel the difference. It might be confidence but I needed both arms to support my weight and again this lead to some awesome falls but luckily no damage, not even to my pride as I could not stop laughing. One thing this has all taught me is that life is too short to take myself too seriously. It is far better to smile and laugh at myself. It is better to tell people why you are laughing than try and style it out.
Educating all of us re Stroke is so important for our own understanding but also for the recovery of the survivors and this is where the two incredible organisations mentioned above come into it. Communication…Communication…Communication!!!
Now imagine, you have been learning since birth to talk and to explore the world through verbal and non verbal methods – communication is so important to enable us to find our way in the world. The most important tool to enable us to do this is our brain, our brilliant, fantastic and busy brain. The most taken for granted organ in the body. The organ that we are training and feeding from the very moment we enter the world. It controls our ability to understand language and express ourselves (after acting on the information we receive from the outside world).
When we lose the ability to use language it is called aphasia and affects every sufferer differently. It massively impacts on how we engage with the world and how the world engages with us. There is this desire post stoke to shut off from the world but I was encouraged from day one to interact with everything and everyone around me.
For me, I had expressive aphasia, which means I could understand everything but just could not respond in a coherent or logical manner. From the moment I realised I was having a stroke, I could still understand everything around me but I could not interact. I was merely an observer.
The signals to my language centre were being blocked and therefore I could not find or form any of the words I wanted to and couldn’t speak. The gradual recovery I have experienced since, learning to speak again has been such a relief even though I still now struggle with some words and some forms of letters.
From day one, with the help of my Speech and Language therapist and the help of my family, I started reading out loud and relearning words like it was the first time. Rediscovering books was incredible. I could not imagine never reading again but I was also struggling to read the words – I couldn’t understand them in any order and could not interpret what they meant. Again my brain was screaming nooooooooooooooooooooooooooo…… So four months on, my brain doesn’t feel like its mine yet and Im still trying to work out what it can and can’t do. Going back to work has been a massive test and it feels like my brain has run a marathon but its a good feeling and I’m winning. Aphasia still affects me, as well as still living with the fear of it happening again but I have been a lucky one.
For those survivors who battle every day with aphasia, I send all my thoughts and hopes for a full recovery. I will encourage and support organisations that promote communication, and will actively support anyone with aphasia that I meet on a day to day basis.
There is always hope and sometimes the improvement you see is through little steps but its there. Everyday is an adventure.