As a child I probably wasn’t what some parents would call “normal” I was a bit of a loner, my parent’s used to encourage me to go see my friends, but not having too much luck. I have memories of being about 4 and telling my mum I was going to see my friend, but instead I hid behind the garage for an hour and played alone, then I went back and said I had been to my friends house. I used to hate kids birthday parties. This continued on when I was a young teen as well when my classmates would go to discos, instead of fighting with my parents about not being allowed to go, I would fight with them about the fact I wanted to stay home. But when I look back at my childhood, I was very happy, I wasn’t lonely just because I was a loner.
When I started college I made friends with a girl who also was a bit peculiar, but the difference between us, was that she hated being called odd, she just wanted to be normal. Me I always used to see “normal” as a bad word. Something the cool girls at school were, you know the ones that stood outside and smoked and had a much older boyfriend, a great wardrobe filled of nice clothes and everybody was meant to want to befriend them.
However now as a 34 year old I have come to think about normality in a different light. And this light is shining from a big 1000 watt bulb called Multiple Sclerosis. I wish I was normal. I wish I didn’t have turns at least twice a day of really bad fatigue. I wish my speech doesn’t become muddled because I can’t find the right words. I wish tasks wouldn’t take me longer than they should because I can’t concentrate. I wish I had never felt a MS hug, or vertigo, or dysaesthesia. I wish I had never felt like my body wasn’t my own anymore, like I was getting another person dressed as my torso had gone numb and touching it felt alien.
I wish I was normal, yet I know I am very lucky. My MS is not stopping me from doing my job, I have no physical disabilities, you can’t see by looking at me that something would be not “normal”. Most days I just get on with it, and through my work at the MS Trust I am reminded daily how incredible lucky I am. Because MS can be awful, MS can destroy and MS can mess your whole life up. That is why it is so important to have support. Once again I am lucky because I work in a place where I can just walk into the information team and ask them about any MS questions I have. I know a lot of people that could do with that. That is why the MS Trust exist, they are there to give support to people with MS and their families by giving information. People might not be able to do as I do and walk into the info teams office, but they can pick up the phone and call 0800 032 38 39 with any MS related questions they may have. The Information service will try and help.
I am incredibly proud of being a part of this organisation, they helped me when I was diagnosed, before I worked there, when I was alone with my questions. On May 20th BBC Radio 4 will air the MS Trust Appeal at 07:55 and 21:26 or the following Thursday at 15:27. I hope you would tune in and have a listen to Chris Jones, the co-founder of the Trust, one of our Trustees, my friend, and another member of the MS club and listen to what she has to say.
So anyway I guess I am not normal but hopefully I will get back soon to my former frame of mind, where I actually think that that is ok not to be “normal”.