The Hands That Spooked The Cradle

A few days ago, I was walking along, in a bit of a hurry, just minding my own business really, when suddenly from behind me I heard someone say in Afrikaans; “Look at that man’s hands!”
I didn’t need to turn around to know who he was speaking about. The voice belonged to a young boy. “Oh God, oh God, oh God!” another boy said in utter horror.

I turned around to see two schoolboys, still in school uniform, standing behind me. The way they were behaving you would’ve sworn I was the monster in some black-and-white B grade horror movie from the 1950s.

In my nearly 50 years on this planet, I am completely used to this kind of reaction by now, however, I don’t think I’ve ever encountered people who seemed so horrified before.

There was a time when this sort of behaviour would irk me to no end. There are lots of things that I find hard to accept about society and the treatment of others with differences, but the one thing I have learned is that if you let something upset you that someone else has said about you, then you let that person and whatever they’ve said hold power over you. This wasn’t an easy lesson to learn, and in fact I probably only learned this in my late teens. I was fortunate enough not to have experienced a lot of bullying / name calling as a child.

I have come to believe that Moebius syndrome has affected me two-fold. In the early phase of my life it was my hands, more than the inability to show facial expression that got me noticed. I wasn’t bullied as such or called names – not to my face at least – but the neighbourhood kids would often ask me about my hands and why they were the way they were.

To a 7-year-old boy who just wants to make friends and fit in, this is rather an awkward situation. The last thing I wanted to do was draw attention to my difference, but unless I put my hands in my pockets, they would of course notice it anyway.

They would ask, “Why are your hands like that?” – I was stumped, but I answered, “Because I was born that way.” It seemed a no-brainer to me, being born and how I was born was something I had absolutely no control over. None of us do, of course. Then some clever dick would take it one step further and ask; “But WHY were you born that way?” I had no answer – and still don’t. Medical science is still out to lunch on that one. All this questioning meant that in their eyes I was automatically excluded from being one of their friends.

I have never been ashamed or embarrassed of my hands. I grew up believing that they were unique to me and in a way they have come to define me. I’ve cut many an awkward silence with a joke about my hands. The only time I’ve ever hidden them in my pockets was when I caught people staring at them. They came in handy (if you’ll excuse the pun) as a child when we were learning the difference between left and right by using our hands in preschool. Since my left hand doesn’t remotely resemble my right hand, it was a cinch for me, whereas all the other kids with regular hands struggled to tell the difference. Someone asked me many years ago, before there was such a thing, if they could do a hand transplant- would I go in for something like that? I shuddered at the thought and said no. You never know where those hands may have been, I quipped. But in all seriousness, they are too much a part of me now, we’ve come a long way together. They’ve taught me to think out of the box, and they have taught this naturally impatient person to have patience. I have grown to be perfectly happy with my imperfections.

Using my hands I have taught myself how to do many things over the years that the experts, and even I, believe I wouldn’t be able to do. As I love music, the only thing that I would like to be able to do well is play a guitar or play the piano properly. But as I see it, there is already an Elton John and a Brian May (lead guitarist for Queen, whose playing I love and often play air guitar to) in the world. Those vacancies have already been filled, so best I move along and get my own gig.

The first time I was bullied was by a group of boys during the school holidays at an aftercare centre my mom worked at. They started calling me Two Fingers. If it was one boy, it wouldn’t have been so bad; I would’ve just told him to sod off, but it was a group of boys, including one who I believed to be a friend, but who obviously wasn’t.

You would think I would’ve told my mom about this, but I never did. I think it was because I was much too proud and embarrassed to do so. I also thought that what they’d said about me would hurt and upset her, and I didn’t want to do that to her. It was a case of wanting to fight my own battles.

And that is exactly what I did, but instead of putting on armour and a shield, I sharpened the blade of my wit and used it as a weapon against them. When they called me Two Fingers and went on about my hands, I would say that to me they looked like octopi, and what exactly did they do with all those fingers anyway?

It worked like the proverbial charm and some of the boys really liked my humour and my spirit, in fact one or two of them wanted to befriend me, but I was having none of that.

After that incident I asked my mom if I could rather stay at home with my older brother. It meant that in the days of video remote controls which still were connected to the video machine via a cord, I became the Chief Video Remote Controller, Captain of Video Cassette Changing and Apprentice Coffee Maker for my older brother while we sat in the darkened lounge with all the curtains drawn, drinking copious amounts of coffee – all made by yours truly – and watched video after video during the school holidays. Watching Mary Poppins, The Apple Dumpling Gang, Old Yeller and The Cat From Outer Space were all more preferable than being Two Fingers.

Apart from my friends at school, and two cousins of mine who I regularly hung out with, I began to be wary of kids, especially if I didn’t know them based on my previous experiences. This continued up until early adulthood. Just as I had grown up and changed, so had my relationship with Moebius syndrome grown and changed. At first, when I was a child, I tried my best to just ignore it. If anybody asked me about it, I would make a humorous quip – I once told some kids that my hands are the way they are as the crocodiles in our swimming pool had bitten my fingers off – finger snacks, you see - and that would get me out of having to talk about it. To my fellow 7-year-olds that was far easier to understand anyway.

As I approached adulthood though it became important to tell the truth about Moebius. As a boy I couldn’t even pronounce the Moebius of Moebius syndrome properly, but as an adult I was determined to be honest, even if it meant that some people may think that I have Needless syndrome. And needless it certainly is.

On becoming an uncle to my nieces and nephew I especially wanted to be truthful about Moebius, and to let them know that I am much more than some of my parts.

One day I arrived at my sister’s house for a visit. She took me aside and said; “I hope you don’t mind, but Jenna wants to ask you about your hands.” Jenna is my niece who was about five or six at the time. Every Christmas I used to write a letter to her from Father Christmas – aka me. One year I snuck into her room and placed an envelope containing the Father Christmas letter on her pillow. She found it and implored her parents to read it to her at the family gathering. The expression of utter amazement and wonder on her face was the greatest reward I’ve ever received for anything I have ever written.

I approached little Jenna. To my surprise she didn’t ask the same question I had been asked for most of my life “Why are your hands like that?” (To me, it’s a bit like When are the Beatles getting back together, was for John, Paul, George and Ringo in the 1970s) She asked me if my hands were sore, seeing as how they looked, and if I was in pain because of them. Her genuine concern melted my heart. No-one had ever cared to ask me that before. For the next few minutes, I went through great pains – pardon the pun – to explain what it was like to have my hands and the things I could do with them, including one- or two-party tricks that I’d learned along the way involving my hands, and that I wasn’t in any pain whatsoever. It was very important to me be truthful to her and not deflect it with a joke like I had done in days past. I didn’t want her to worry about me, hence I did my best to reassure her.

Upon a visit to my brother in Johannesburg, his daughter -my niece and goddaughter- Natascha pointed out to me one day as we were drawing pictures around the dining room table, that it was actually good that my left hand is the way it is, as I can use the first finger on that hand to make a thumbs up sign. I hadn’t done this for her before, and she was only six years old, so I’m not sure how she had worked that out. I only figured it out in my late teens. For her I would draw Handyman – a tracing of my right hand which I would then draw eyes, a big nose and a smiling face on, to amuse her and also to put her at ease.

Together my nieces and nephew taught me that kids were no longer the enemy that I had once believed them to be.

Yet after the incident with the schoolboys, I was unwillingly and rather unwittingly transported back to the days of being Two Fingers and being made fun of. I was only there for a short while though as whenever I am down due to things like this, something inexplicably pulls me back up; and like some Marty McFly of Moebius, I travel back to the present, back to being positive in no time; dust myself off, and resolve to chalk it up as being ‘just one of those things.’

The following evening after working late, I decided to go to a nearby restaurant for dinner before going home. Let somebody else do the dishes for a change, I decided. After I sat down, I was approached by a waitress who I knew from being a regular customer, and a young boy. She told me that he was shadowing her that evening. He was about year or two younger than the boys I had encountered the previous day. Oh great, I thought, being instantly catapulted back to the incident, that’s just the last thing I need. Putting the thought aside I ordered a chicken schnitzel and, as it was cold, a pot of tea. “I’ll have a pot of tea and be jolly English tonight.” I quipped, mustering my best British accent. The waitress, used to my sense of humour by now, smiled. The boy next to her laughed.

While I waited for my food to arrive, I whittled away the time on my cellphone. The job shadowing young boy came back to bring me a place mat and some cutlery. I said thank you, young man, and he smiled. Even if you have a disability and are in a setting like a restaurant and being serviced it is still possible, even if the waiter is being perfectly polite, to feel offish by the vibe they give out. This was not the case here. He came back along with the waitress to bring the meal and told me to enjoy it. He was a very well-mannered lad, I had to admit. Very unlike the schoolboys from the day before.

At the end of the evening, I gave him a tip as well as the waitress, as I also happen to know a thing or two about dealing with customers, and I thought even though he didn’t do very much, he had a very good attitude. I felt as if something inside of me, residue from the incident the day before which I didn’t know was there, had been washed away by this encounter and I was somehow healed, and my faith in humanity -and kids- had been restored.

If I think of the incident now, I think the part of it that I was most offended by was the second boy saying, “Oh God, oh God, oh God.” Not only because it sounded as if he had just encountered some grotesquely unhuman creature, but also because I'm a Christian and did not appreciate the blasphemy involving myself. Perhaps I was meant to have that encounter at the restaurant. It was almost like a balm for what had happened the day before.

So, what can be done about things like this? I think as well as Maths, History and Science in schools we need to teach kids how the world really is and works. We need to teach them that not everybody is necessarily like them, and that diversity – and being able to respect people and their differences - makes for a more whole, more complete world.