Moebius Voices

1. Sophie: Gavin for those who don’t know your story, how does Moebius affect you?

Gavin: In addition to the facial paralysis, I was also born with club feet – which were corrected non-surgically as a baby. I have very low muscle tone in my arms, which means I can only lift them to a certain height. They are permanently bent – there is a medical term, but I’ve forgotten it! I was also born with syndactyly, and my hands are generally just not like everyone else’s.

2. Sophie: What information were your parents given when you were diagnosed?

Gavin: I was only diagnosed at the age of 5, before then it was a bit of a medical guessing-game. At one point they thought I had Foetal Alcohol Syndrome and at another they thought I had Goldenhar Syndrome. My parents were told that I would never be able to walk or talk, and they said I’d probably be a vegetable – they unfortunately didn’t say WHICH vegetable, but I suspect it could’ve been broccoli. After I was diagnosed by an ophthalmologist who had recently returned from studying in the US, he gave my parents a badly photocopied page from a medical book he had obtained while in the US, which was written in heavy medical jargon. Even Good Ol’ Mom who read lots of books and could answer all my questions like why is the sky blue, couldn’t make head or tail of. It contained a picture of a boy with Moebius who, when I first saw the pic at around 7 years of age, used to think that it was me as I’d never seen anyone like myself before. That was our sole source of information on Moebius syndrome for about 13 years.

3. Sophie: What was childhood and adolescence like for you as a person with Moebius?

Gavin: I was lucky to have had a fairly uneventful childhood socially regarding Moebius. There was an incident of name-calling – Two Fingers – which upset me quite a bit at the time. I basically learned to diffuse situations such as that by using my sense of humour. It really helps to have a sharp wit – don’t ask me where it comes from! It may even have been forged by situations like those.

I think as I’ve grown older, so my relationship with Moebius has evolved. At first despite going into hospital, visiting doctors and having physiotherapy a lot, I ignored it. I never spoke about it. If someone did ask, I would give a flippant reply and make a joke of it. I couldn’t even pronounce the word Moebius properly so that made me even more loath to talk about it. If any of my boyhood friends asked what had happened to my fingers, I’d say that the crocodiles in our swimming pool had them for lunch. At the age of 7 that sounds a lot cooler and easier to understand!

My adolescence was very much the same regarding my attitude towards Moebius. I had a good group of friends who I hung out with so socially I didn’t have many problems. There was a girl who I fancied. At one point I decided to declare my undying love for her in verse, so I wrote her a poem. The only problem was that I had actually never spoken to her before as I was much too shy, and I was worried if she’d be able to accept me as I am – warts, shyness, Moebius and all – so I asked a friend to give her the poem one day at school. I watched as he gave it to her. She read it, tore it up and ripped my heart out at the same time. At the time I believed that it was due to me having Moebius- but as I’ve got older I also think I was hugely inexperienced and just basically behaving like an idiot.

As I’ve said, up til now I would basically ignore Moebius- despite that I lived with it every day of my life. But there was a day in high school where my English teacher, who I liked very much, asked me about it. I could’ve done my usual thing which was to make a joke of it and avoid the question, but for some reason I wanted to be truthful. So, I told her what I knew about Moebius – which at the time wasn’t very much – and my experience of living with it. That was the last period on a Friday afternoon. We had English again during the first period on a Monday morning. I was totally gobsmacked when she showed me a newspaper article she’d read in the Sunday Times the day before of a little Irish girl who, like me, had been born with Moebius syndrome. It was the first time that I’d ever heard of someone else who had it. I had come to believe I was all alone in the world with it.

4. Sophie: What do you like most about yourself?

Gavin: My sense of humour. It has got me both got me into trouble and got me out of trouble in my life. It’s given me the ability to see the funny side of things in any situation no matter how bad or how sad. It has got me through many a tough time and helps me get back up when I’ve been knocked down.

5. Sophie: Can you describe a time when you’ve needed to adapt things or situations to suit you and your Moebius?

Gavin: When you have hands like mine there are a lot of workarounds involved in doing things which might seem basic to everyone else. Many years ago, I was hunting high and low for an electric can opener – that was before pull-cans came along – as I couldn’t use the hand operated can opener. When I first went to school the teachers, therapists and my parents feared that I would not be able to use my hands to write, which would exclude me from a normal education. One day my mom was doing grocery shopping and stumbled upon a portable Brother electronic typewriter. It also worked with batteries which meant it could be easily carried around. So, for my 7th birthday I got a typewriter for a birthday present – I was actually very disappointed as I wanted a BMX bike instead! This enabled me to type my schoolwork instead of writing it. I did eventually teach myself how to use my hands to write, and from high school onwards wrote all my schoolwork instead. The good thing is that it has taught me how to think out of the box. If there’s something worth doing, I often have to find my own way of doing it.

6. Sophie: What is life like for you now as an adult?

Gavin: I think while the first part of my life was more focused on overcoming the physical barriers of my disability, my adult life has been more about overcoming societal barriers of having a disability. The societal barriers have been the toughest challenge for me so far, mainly because they aren’t all up to me. As an adult I lead an independent life. I have my own place and a job. I have friends and enjoy socialising. Unfortunately finding a romantic partner hasn’t been easy and at this point I doubt if I will find “The One.” It often feels that having a disability walls me off from being a man in the completist sense. It is important for me as a man to have someone to love and to care for, but it seems as though it can never be. It’s not all due to Moebius I have to stress. I can be picky and for me to have a meaningful relationship there has to be a connection of some sort. There was at least one instance where Moebius wasn’t such a big issue, but there was also no connection.

7. Sophie: What would you say that having Moebius has taught you or shown you?

Gavin: I think having Moebius has taught me empathy, patience, and not to judge books by their covers. I find that the inner is much more important to me than the outer of a person, as I know from experience that that’s where it’s all happening. I also think it has given me a certain amount of resilience. When facing huge personal issues not related to Moebius, I think the only reason I came through it when I know of others that didn’t is because Moebius has made me into a stronger person than perhaps, I would’ve been had I been born without it.

8. Sophie: What more do you feel needs to be done to achieve better acceptance and integration of people with facial paralysis?

Gavin: I think a greater amount of awareness is needed, but perhaps not in the sense that we’re used to. It would be great if someone can design a video game or some sort of life simulation where the player / user can experience what it’s like to have Moebius, with emphasis on the social aspects of course. When people hear about Moebius or other disabilities I think it’s very much a case of “There but for the grace of God go I,” but if you’ve walked a few miles in our shoes you will understand what it’s like to have it and how we’d like to be treated. The best non-technological way to do this I think is by sharing our stories and perhaps giving a few talks here and there.

9. Sophie: What’s a hope you have for families who are receiving a diagnosis of Moebius today?

Gavin: I hope of course that that they get a speedy diagnosis. I was born in 1977 – when the dinosaurs and disco duck still walked the earth – and at that time the doctors gave my parents the “He’ll Never.” Speech and advised them to put me in an institution. Lucky for me they didn’t listen, and my mom believed she’d get me to walk and talk and do the other things the experts said I’ll never be able to do. To my surprise this is still very much the attitude of some in the medical community today according to some of the stories I’ve heard. My advice for any new parent of a child with Moebius would be to love them unconditionally – if they have parents who love them, the battle is already halfway won. That’s what they need even more than medical intervention. Knowing that they are loved will give them the foundation and the strength to face all the other challenges, especially the social ones, in life.