Moebius Syndrome – Aiden: I’m 28, from Co. Kerry, Ireland and have had Moebius Syndrone since birth. Because of Moebius Syndrome, I cannot smile or move my eyes, my left hand is deformed and I had to have numerous operations on my feet as a child due to having clubbed feet. I did not let my disability deter me, however. I have gone to college and completed numerous home study courses, obtaining dilplomas of distinction in creative writing, freelance journalism and writing for TV & Radio. Two years ago I released a book of poetry entitled, A Viking’s Prayer -www.avikingsprayer.com and later this year, I will have my young adult fantasy novel, The Zargothian Tales (working title) published by an American publisher.
One of the things that was always instilled in me as a child was not to let my disability hold me back and I’ve pretty much stuck to this ever since, always relentless in obtaining or achieving a goal that I set for myself. My current goal is to hopefully make my novel and proofreading/editing business, “Lucid Eyes Editing” – www.lucideyesediting.com – a success and while I understand it may take time to accomplish this, I’m confident that it can be done. Was I always this confident? In truth, no I wasn’t. In fact, as a child and teenager, I was very shy and very conscious of my disabilty. It wasn’t until my teenage years that it really hit me about my disability; not being able to smile was a huge blow and because of the curve at the end of my spine, my walk and posture were affected too. You see, right up until my teens, I thought that I was like every kid and while I was fully aware that I had Moebius Syndrome, I didn’t realize that I couldn’t smile and always wondered why everyone looked at me rather puzzlingly. That was, of course, until the day I realized that I couldn’t smile. I knew then what bothered people. Like I said before, it came as a huge blow and from that day forward, I became very self-conscious. There were days when I was younger when I wished I didn’t have this disability or syndrome and truth be told, there are days that I still wish I didn’t have it but thankfully, I am overcoming this and no longer think too negatively about the syndrome. Of course, it is a constant struggle and I try not to get too hung up on it but I’m very fortunate that I have such a loving and supportive family and good friends..
I have a disability. So what!!
Imagine a beauty queen standing proud on a stage, flashing her pearly whites and looking glamorous. She thinks about pursuing a career as a model one day and with her stunning good looks, this girl would probably be very successful. Now imagine what life would be like if that same beauty queen suddenly woke up one morning to find that she could no longer smile? The poor girl would probably be overcome with great sadness and instantly know that her career as a model has now gone down the proverbial drain. For some people with Moebius Syndrome, living without a smile is a reality they face every day.
Like most people I have encountered, there’s a high probability that you have never heard of Moebius Syndrome before. Then you’re not alone; most people in the medical profession have not encountered many patients with Moebius because it is so rare. In fact, it’s estimated that one in 10,000,000 are born with it. So what exactly is Moebius Syndrome, I hear you ask? Well, it’s not like Down Syndrome. No two Moebius sufferers are alike. Some may be missing a few digits or a limb, while others may be missing an ear. The one characteristic that is common amongst most Moebiusians is that they can’t smile or move their eyes due to some facial nerves being dormant since birth. Sometimes an individual may also be partially deaf. In my case, I had to have a few operations as a child to correct some deformities and had to overcome some learning difficulties.
After reading the above most people might say, “Oh my gosh, the poor things. Why do they have to suffer like that?” Well please don’t pity us. I, like most Moebiusians, have lived a full life. Some have gone on to college, like me, and are holding down full-time jobs. In my case, I have received diplomas of distinction in: writing for TV and radio; freelance journalism and creative writing. I’ve been published in many magazines, e-zines and a few poetry anthologies. Last December my young adult fantasy novel, The Zargothian Tales: Return of the Son of Hamorin (www.thezargothiantales.com) was published in ebook format after three years of searching for a publisher and it is now also available in paperback. In June 2011, I received my second degree in Reiki so now I’m able to practice as a Reiki healer and heal people, which is something I’ve always wanted to do, as well as my first love – writing. Having a supportive family is also essential when one has Moebius Syndrome and I’m blessed with the family God has given me. They have supported me in all my pursuits and were there when things got a little tough when I was in my teens and early 20s.
Of course, there are those ignorant individuals who wish to stand, stare or laugh at us because we’re “different” but this doesn’t bother me anymore. I don’t hate these people; instead I pray for them that they may see sense some day. Yes, life may not be easy for a person with Moebius but so what if I have a disability! I’m damn proud of who I am and what I’ve achieved so far in my life and there’s not a thing that I would change.
So for those of you with disabilities, don’t be afraid to live your life and chase your dreams. You only live once so make your life count and show the world your inner beauty and true magnificence. You’re not a “retard” like some callous people like to label us. Instead you are special and can make a true difference to the world, so don’t ever forget that.