I have been inspired to write by Nick whatzisname and his Stumble upon YouTube video. What an amazing bloke. What a totally refreshing attitude to life. What an approach to being different. I bet he doesn’t moan about coughs and colds and feeling aches, or blisters, or another trivial stuff about his wellbeing. How lovely his appreciation what he can do, and his self-slapping when he finds himself “what if-ing” about having arms and legs. So, to explain, Nick was born with no arms and no legs, just a “chicken drumstick” as he describes his left leg. I presume that he is a thalidomide baby, and he looks as if he has been around about as long as me. He has a trunk and a head, both perfectly normal, and an extraordinary sense of humour. Nick was born, and has grown up, albeit to the height of not much more than a few feet, disabled. From day one, he has been different. He has likely either had to get used to explaining the truth, or he has been able to use his imagination and humour, to come up with extraordinary stories of how aliens took his limbs, or how they rotted away, or they were eaten by spiders, or whatever… to entertain himself and scare and shock his audience. So, Nick has grown up learning to adapt what his friends do, to what he can do, and no doubt, to lead the way too. He has amazing foot-balling header skills, but he is quite useless in goal. He demonstrates amazing confidence from a high diving board.
Nick has come into my life virtually, through the medium of YouTube, and he has reminded me of how lucky I am: I have both my arms, and legs, and I am still useless in goal, and probably, given my craniotomy, I should not try to do headers with a football either. Nick has reminded me about the appreciation of the present tense, of what I can do, and who I have close to me.
Nick has made me think and compare the relative (mis)fortunes of disability from birth, and disability in later life. I am not saying either is easier, or worse, or better. I am just thinking that the are similarities and differences, meaning that my family of disabled siblings probably extends to hundreds of thousands of people in this country alone, and millions globally. I suppose the key difference to those labelled disabled at birth, and those like me, who are labelled disable later inline, is change management, and expectation setting, and social fitting and adjusting. For those born with disabilities, their “normal” may not be the societal norm, but it is theirs. The challenge is self acceptance, realisation of the differences and similarities, and helping others with their acceptance of their “normal”. There is no doubt the need to grow some thick skin, and developing resilience to del with the judgmental and cruel comments that come from those who know no better. For those who become disabled in later life, by whatever means, be it trauma, accidental or self-imposed, or disease, their journey is different, the change from able to disable. It is, or it has been for me, been about accepting the “new me”, as it is, as I am. I have been forced to redefine myself, whether I wanted to or not. I have been forced to change my expectations of myself, and of others. I won’t say I have had to lower my expectations, but in some ways it sometimes it feels like that, when I can’t stay up late, can only manage four pints of beer, and am no way near as fit as I was. I won’t say lowering my expectations of myself though, as that might make me feel like I am a failure, and I am not very good with failure. The reality is, I think I often expect a lot more of myself now than before my diagnosis: I want more contentment, more time spent on purposeful stuff, and less time on wasted dross.
My sense of purpose has been magnified by a shite prognosis. As Christopher Hamilton said “a condensed life”. What happens if there isn’t time for delayed apologies and making up? Well, we either live with the potential regret, or we make a bigger effort to ensure that there is less need for apologies, and those that are needed are done toute de suite. Having been on the periphery to the suicide of a friend’s father in law in the last week or so, it has been a timely reminder to make sure that rifts are resolved.
Vicky Galbraith April 2011