Life With Poland’s Syndrome
Most people who know me will have, by now, realised that there’s something a bit different about me – I have one and a half hands. As much as I like to joke and attribute this to being the survivor of a shark attack, or having an accident with a washing machine, or even that I resorted to autocannibalism whilst stranded on a desert island, the reality is not quite so dramatic.
I was born with a condition called Poland’s Syndrome which is pretty rare, affecting roughly one in 100,000 children (don’t worry I don’t expect anybody to have heard of it). It’s basically when the pectoral muscle in the chest is either underdeveloped or fully absent in a person which consequently causes an underdeveloped arm and hand. The severity varies from case to case and the cause of it is still ambiguous. But all in all, there are no known major risks of it, it just causes you to look a bit different from the norm. In my case, I have a shorter right arm and underdeveloped right hand.
Naturally, I would have been born right handed, as was realised when, as a baby, I was inclined to reach for everything with my right hand, but as it is not fully formed, I managed to adapt to function as a left hander. People are always shocked by this, particularly in regard to how neat my hand writing is but it’s not that big a deal. Lacking muscle has also caused my body to adapt accordingly and various tests involving large needles being stuck into my arm have revealed that my muscles function in a different way to how they should, in order to compensate – the body is quite amazing after all.
Now this isn’t by any means a sob story, nor anything I believe people should feel sorry for me about. When I’m asked the question “How badly has it affected your life?” I usually laugh because it honestly hasn’t.
I have never considered myself to be disabled in any way and neither has my family. We just view it as a difference, as a quirk, and no more than that. Everybody is born with things that make them individual and, of course, some differences will be starker than other’s. But this is all I’ve ever experienced and known, so to say it has made me unable to do anything would be completely untrue.
I can’t actually think of any situation where it has hindered me; I play the guitar, I tie my shoelaces, I rock climb, I do photography and can paint my own nails. All of which I can do well, even if I have a slightly unusual technique to do so.
If anything, I feel that I have gained more in my life as a result of having “less” physically.
Some of the best friends I have made have been through a charity called Reach for individuals with upper limb deficiencies and together we have done amazing things like windsurfing, abseiling off of 80 ft. cliffs and archery, to name a few. Whilst we have been brought together because of our deficiencies, everything we’ve done together has been in spite of them; we’ve never used equipment with any special adjustments, just the stuff any ordinary person would use.
Yes, I have experienced the brunt of some not-so-accepting people, particularly when I was younger. The majority of people I have met in recent years don’t even mention it to me or only do so to comment on how cool they think it is. Perhaps some don’t speak of it in fear of offending or embarrassing me but more often than not, because after initially registering it, they soon forget it’s even there, that is, until I utilise it for a cheap and easy Halloween costume.
I can’t speak for everyone with similar conditions because I think I am quite lucky to be content with it. It’s a part of who I am – albeit not something that has majorly impacted my life – but it is not something I would want to disguise with a prosthetic limb or even make an effort to hide (which can lead to some funny handshaking situations when people try to go for my right hand and realise it isn’t all there).
The main impact it has had on me is one that is positive. It’s allowed me to be an accepting and non-judgemental person across most aspects of my life due to my experience and knowing how little differences impact individuals as a person.
I know what it’s like to be stared at, to receive ignorant comments, to be ridiculed, but I also know that I have and will never be held back by Poland’s Syndrome.
If somebody offered me a chance to have two fully formed hands for any reason, aesthetic or pragmatic, I would turn it down in an instant.
If you take nothing else away from this, at least I hope it demonstrates that no matter what individual differences – physical or mental – people may have, it makes them no less human than anybody else. We all have our quirks and we all have our insecurities, ‘disabled’ or not, just be kind and don’t draw attention to them in a negative way. Each person is so much more than that and deserves to be treated as such.