Date published: 07 April 2015 by Anna Jackson
My family was just like any other family. We had our ups and downs but overall we were happy. We had days out to Moors Valley for picnics with ice cream and cheese sandwiches and we often went for walks on the beach on rainy days. I remember going to Centre Parcs on holiday and I absolutely loved the rapids. My brothers and I would run all the way up to the top to go on them over and over again. I love these memories. When I didn’t had to worry about anyone, or anything, else. I could just be a child. Times changed dramatically, however, when I was 7 and diagnosed with Coats Disease, a condition where I lost the sight in my right eye permanently. This was a very traumatic and emotional experience for me and it changed me as a person. I became very closed off, shy, and bitter towards my family. Kids at my school bullied me for years and I lost all my friends. Years of constant torment from other kids actually made me a tougher person, I now have a backbone and the ability not care about what others think of me.
A few years later, when I was 11, my 9-year-old brother, Robert, was diagnosed with Duchenne Muscular Dystrophy, a severe condition where there is a progressive weakening and wasting of the muscles. My youngest brother, Jack, who was 6 at the time, was also tested and it was found that he too had the condition. All of a sudden, it felt like my family wasn’t a happy one anymore. At first I didn’t fully understand what Muscular Dystrophy was. I was given booklets that told me bits of information, but almost overnight the only thing my parents talked about was Robert. I was jealous because it felt like they loved him more than me. No matter what I did Robert’s well-being would always come first, I began to resent him and I began to behave badly to get attention. It seemed to me that was the only way I could get my parents to notice me. Robert was given a manual wheelchair. To my parents this was just another thing to worry about but my view was
“Oh, Robert’s got ANOTHER new thing, he’s always getting things and it’s not fair!”
Looking back now, my brother getting a wheelchair is not exactly something to be jealous about, but all I saw was him being the centre of attention again.
Going to the beach became a hassle, not a day I enjoyed. Getting him to sit in the wheelchair was a struggle because he was too embarrassed to be seen in it and I didn’t like to walk beside him as people would stare. Seeing a little boy in a wheelchair was not a normal thing to see. We had to put more thought into our outings now, “Is this place wheelchair accessible?” “How far away is the disabled parking?” “We can’t go there on holiday because there are no facilities Robert can use” became regular questions. To me, it seemed everything we did was about him. I couldn’t talk to my friends because they didn’t understand so it was an extremely lonely time. At some point my mum got me a family councillor. Me and my mum would sit down with her to talk about how we were coping and then after a few minutes my mum would leave us. In this one hour session I was able to get out all of my inner most thoughts and feelings. Sometimes I would even cry.
I found ways of distracting myself. I have always been a keen book-lover so I began to read every day and I was soon able to get through thick 500 page books in under 3 hours. My reading age was above average and to this day. I still love books and have too many to count. Other ways were through Television and Films. I really began to get into TV when The Vampire Diaries was aired in 2009. Now I watch around 10 different TV series whilst keeping up with all the new books. This is how I was able to take myself away from the world I live in and put myself in someone else’s shoes, momentarily forgetting what I was worried about. I suppose this was my coping mechanism. I now take Media Studies, Psychology and Sociology in sixth form and I believe that my choice of taking Media Studies was influenced by my love of film as a way of distraction.
My youngest brother, Jack, has been getting medication far longer than Robert, meaning his condition is working at a slower pace, however recently Jack’s condition has been getting worse and it’s becoming more noticeable that he is in pain. I’ve seen it happen to Robert and now I can see the condition progressing in Jack. I know what his future holds.
Today, I go to college, get on with my work to the best of my ability, help my friends, and socialise, however, I always have worries in the back of my mind about my future. I worry about my grades, if I ever have children whether they will have the same condition and whether I can get a job or go to university. I wonder if I’ll ever get married and many more future possibilities. The advice I’d give to anyone who has a disabled brother or sister is to not let their disability define you and to be your own person.
Laura, currently supported by Rainbow Trust