My life, my syndrome

"The innocent and the beautiful have no enemy but time" - William Butler Yeats.

"We are all of us stars, and we deserve to twinkle" - Marilyn Monroe.

 

I'd be completely lying if I were to say that I love being different. When I'm feeling really brave then I do feel like I can accept myself and take on the world at the same time. However, this only happens about 10% of the time. The rest of the time I want to hide away. At this moment I'm feeling neither brave nor scared, I feel like I'm somewhere between acceptance and denial.  

I have Moebius syndrome. In medical terms this is "a rare neurological disorder that is present at birth which primarily affects the 6th and 7th cranial nerves". Yeah, I have no idea what that really means either! In my words, it basically means that from birth I have had a facial paralysis on the one side of my face, it made me unable to smile, move my eyes left to right, raise my eyebrows, pierce my lips, I have a deformed tongue with limited movement, and then it also means that I have a weak upper body and to top it all off I was born with bilateral talipes (clubbed feet) - these are the ones that spring to mind first at least. 

When I was growing inside my mum there were no indications on any scans to show there would be anything wrong with me at all. So when I was born it was a complete shock for my parents and family. I really cannot imagine what it must have been like for my mum and dad to think that they were getting a healthy child and then to get a child with something wrong – my mum has said that they both had to grieve for the child they thought they were having and in the mean time still care for me and my little extra needs.

I know that I am so blessed to have been given my parents, they never once gave up on me and for that I really am eternally grateful. When I was born the doctors were unsure about what I had. My parents had been told that I wouldn’t walk, or talk, that I’d need constant extra support, operations etc. Being fairly young parents, my mum 23 and my dad 30, I really cannot comprehend how utterly devastating it must have been.

So many people have told me to “embrace being different”, “don’t fit in to the mould Jemma” and to “stand out from the crowd”, but I don’t want to. I want to be the same as at least one person I know. I want to be able to raise my eyebrows, I want to be able to smile properly, I want to be able to have enough muscles in my top lip to eat with my mouth closed – these are stupid and pathetic things, they’re tiny and they shouldn’t matter, but they do!

Just like my parents grieved for the child they were supposed to be having, I think over the past 6 or 7 years I’ve been grieving for the person I should have been. When I look at my family and friends I feel like the only one who isn’t beautiful and this actually breaks my heart, even thinking about it now. If I could have one wish, it would be for me to be without my syndrome just for one day so that people could see that I am not meant to be like this.

My life would have been much easier without Moebius sydrome. When I moved up to secondary school my idyllic childhood changed. Instead of being just another girl, I became the girl everyone knew for the wrong reasons, people I didn’t even know would come up to me and make fun, point out my weaknesses and just generally be horrible and this has genuinely been with me for such a long time. Even now, 6/7 years after it started I can still remember it and it honestly used to destroy me. I used the term “used” there because I’m slowly starting to move on and slowly I’ll get there.

I never used to talk about my syndrome, I guess I thought that if I didn’t speak about it, then it wasn’t there. But as I’m getting older I am growing in to myself I think. On a good day I feel blessed to be different, but usually these are pretty few and far between. Some days, I am ashamed of myself, some days I don’t want to get out of bed. Some days I feel like the whole world is staring at me, judging me and everything I do.

Regardless of how sometimes I might want to give up, I know that I can’t. I am eighteen years old now and I have my whole future ahead of me. I have lived for only a short time and I hope I’ve had the worst of it over already. If I haven’t, well then I have the best people around me to help me overcome it.

I also think that I’ve grieved enough for the person I could have been. It’s time to say goodbye to the person I have never and will never meet. I have matured more than I could have imagined. I know that not all of me is conventionally beautiful to the eye, but I don’t think I mind as much anymore. I am happy with my heart, my inner self and I know that I always try to be the best person I can be. I have also learnt that I am not unlovable and it just takes time. One day I’ll be everything I’ve ever wanted to be and more. 

I'm being brave ;)