I think it was around the age of six I started to realize that my body worked a little differently from others. I convinced myself that when I was older, whatever it was that was wrong with me would just disappear. My logic behind this was that after countless appointments to the pediatrician, they couldn’t tell my mum what it is was that was making my muscles jerk uncontrollably, and so, there was nothing to say that it won’t just disappear! This line of thinking may make no sense to others, but to me, it made perfect sense. It helped me to put up with being a little different because I thought, “it’s only for the time being”. The years passed by, I continued my way through school and attended all my hospital appointments but I never seemed to get any closer to a diagnosis or that miracle cure I longed for. I started to lose hope as my sister and I were passed from neurologist to neurologist: each one empathetic to our situation, but still, no breakthroughs. Then before I knew it, it was time to leave school and go into adulthood. I wasn’t ready for this! I still had the jerk hanging around. It was this feeling of fear and desperation that led me to make a decision that brought about the most humiliating experience in my life so far.
Sitting at my Grandpa’s computer, I had an idea that if maybe I could contact a magazine or a newspaper and see if they would be interested in my story so that I could find someone else out there who was going through the same thing, or even a doctor who knew a way to cure me. I Googled to see if there were any health sections looking for a news story and found a magazine that was, so I contacted them. To my surprise, there was a lady who was very interested in my story, so after being introduced to each other she explained her role and I shared a bit about myself and my condition. I always remember one comment that was made where she stated “I don’t look like a person with a disability”, I guess some people still don’t realise there is not a certain look for people who live with a disability. Later, a story was released… but it wasn’t mine. They painted this girls story and it was as if the story was created so people could sympathise with me, which was not my purpose, but I guess I should have been more clear. I decided to just move on from that idea and hope no one saw the article. To me, at least, it was worth a try.
A few weeks later I was contacted by a journalist who had read my story in the magazine and was intrigued to know more. It felt like it was a second chance to share my story and to have it right this time. I explained my frustrations, the impact it was having in my life and how I hoped to find answers. I was only 18, so I didn’t quite realize how anything I said, can be twisted and manipulated in ways so as to make the story more appealing to readers. A photographer came and took a few pictures of me and Naima (my older sister). Looking back at them I cringe! After that I never heard from anyone so I wasn’t quite sure when/ where or if our story would turn up.
I can’t remember exactly how much time had past but I remember the moment I found out the story had been released. I was in my bedroom when my mum came up, I could tell from the tone of her voice when she said she had something to tell me that it wasn’t going to be something good like “we won the lottery”. Automatically I am thinking if there is anything I have done wrong over the past couple of days but when I looked at my mum I could see I wasn’t in trouble – she looked more worried if anything, and that made me worried. It turned out that a few of the newspapers had decided to use my story and one of them in particular had choosen to give the story their own little spin…
The second I knew about this I just wanted the ground to open up and swallow me whole! I headed straight for my bed and could not stop the tears streaming down my face. Living in a small town working in the local super market where they sold The Sun newspaper, I thought I would never be able to show my face again – I felt so humiliated. If anything, the article was going to make sure I stayed single for the rest of my days, I was already mentally preparing myself for purchasing a bunch of cats right there and then. Even the way my condition was described was incorrect. My mum complained about them emphasising her age but I still think I got it worse. So a lesson to anyone who is interested in sharing their story, watch out if they ask “do you have a boyfriend?” and you happen to be single. I think I spent about two days underneath my quilt in my bed, which isn’t too bad considering I told my mum I was never coming out. In a way it kind of showed me I was stronger than I thought because I didn’t believe I could get over it and now its a story I share and I can laugh about. Every experience we go through in life we can learn from and in this case I learned – never trust anything you read in The Sun and also to be more careful when speaking to anyone involved with the media (not that I really have to worry about this too often).
We all have our embarrassing, humiliating moments that we think we wont get over but we do and later on they seem to make the most interesting stories when/if you share them.