Why Me?

This is a question which has many answers when it comes to why individual people are given suffering of any sort to undergo. One answer is that it’s random. Another is that it’s a test of fortitude and endurance. Yet one more answer is that it is a punishment from an angry god for past sins so it’s Karmic law. The Biblical answer is that Eve ate the apple of the Tree of knowledge which I take to mean that she seduced Adam and the tree of knowledge of good and evil refers to sex.

On a collective level we just don’t know unless we except that in Greek mythology, Pandora opened a box containing all the troubles of the world and they bit and scratched her and I think only hope was left if I remember my education properly.
I know full well why I am blind. Being ten weeks prem I was placed in too much oxygen which ruined the optic nerves and retinas and that, as they say, was that and the rest, history. That happened to loads of people with whom I went to school and was still happening long afterwards and one girl’s mum, whose name I know but won’t reveal, fought for over twenty years for compensation for her daughter and eventually got enough to enable her to have twenty-four-hour care and to buy a house of her own. My mum wouldn’t fight since she didn’t want it to come out that she was living over the brush as they used to say, with my father. That was naughty for good Catholic girls and women or “bad” ones who wanted to pretend to be good and here am I blowing the gaff and causing Mum to spin in her grave. Well it wasn’t my doing, I just came along for or after the ride was it.

Now here’s the thing. Lately there has been all this talk about those unfortunate and deeply wronged people, given infected blood products having to wait so long for compo. Awful! Be in no doubt I agree absolutely but what stuck in my craw the other day was hearing the scandal described as: “The worst disaster that has happened in the history of the NHS”. Well thanks very much. The Thalidomide victims received compensation and publicity as they should have done but all the blind people left with other disabilities such as epilepsy (for which I take medication) and in some cases severe brain damage as a result of being exposed to these high oxygen levels received neither publicity nor compensation which of course doesn’t go anywhere near to making up for anything lost, be it limbs, sight or a life free of the misery caused by infected blood products being pumped into your system.

What it would have done though would have been to acknowledged a serious blunder with life altering consequences which has meant higher levels of anxiety as we struggle for adequate help and cope with diminishing services as well as paying huge amounts of money for specialist equipment such as the speech software on the computer, reduced job opportunities and even the ability in some cases the mental wherewithal to tell your story as would be the case with a boy I knew at school and saw once as a man and it was awful. He still had the mentality of a child. I doubt he knew why and I only knew after whinging about my lot as a teenager and being hauled off by a teacher who asked me if I knew why he was blind and I said “no”. She then enlightened me and I was shocked.

Just one doctor said he was sorry it ever happened to me and should not have done. He was my former GP, Doctor Stephen Deas who was the best and most wonderful doctor ever. I thanked him and smiled, saying: “It wasn’t your fault” but in the light of all the people who have paraded their apologies for World War Two atrocities this was welcome and showed at least that someone cared enough to acknowledge the wrong, albeit perhaps an accidental wrong, done. As far as I know, it was since 1946, when a doctor realised that these high levels of oxygen resulted in blindness of children exposed to it in incubators so why it persisted so long is unknown. Of course prem babies have under-developed lungs so need help to breathe but not those high oxygen levels without ordinary air going in.

My former home help who has since died was also a prem baby. He was short-sighted so he told me but not enough to be visually impaired and did not go into these high levels of oxygen in an incubator and neither did my mum’s cousin, Roy. He was kept in a shoebox in front of the fire, wrapped in cottonwool and olive oil and grew up with his sight but was asthmatic as are a lot of people in Gloucestershire so I hear. In his case though it could have been the fact that he was premature.

As for the Asperger’s, I don’t know why I have that. As far as I know there has, as yet been no genetic cause for it but there is a heritability factor because it does run in families. Mum and my uncle Les were strange. He was described as “simple” though he had an accident on a Witches’ hat in the park when he fell off. My aunt on my dad’s side was diagnosed schizophrenic but then many women who actually have Asperger’s are labelled thus. My brother had no or few friends and used to sit in the house as a teenager and others criticised this, telling Mum it wasn’t normal for him to do this. She just said that while he was at home he wasn’t out drinking and drug taking. The drink came later and he died because of it.

Am I bitter about all this? I’d be a liar if I said I wasn’t sometimes. What angers me most is that absolutely no acknowledgement of what happened to loads of us throughout the 1950’s and the decades beyond has never been mentioned. It is as though we don’t matter, are invisible, haven’t had altered lives, don’t continue to cope with serious changes in our collective fate and as if blindness is no big deal. In fact people are described as “blind and disabled”. What is this if not a serious disability? Why! Most sighted people cannot navigate their own homes in the dark for god’s sake!

Of course we can rise to the challenge, work and live alone and some even have children and have married as I have done and also worked as I did before retirement age both paid and voluntary when I could get it but that’s not the point. We should be recognised, too though it’s a bit late for compo unless you watch “Last of the Summer Wine”. However, there have been serious cuts in service provision and the best thing about RNIB is the talking book service and they, too, fall very short in adequate service provision though they did save me from homelessness once and helped me get a job many years ago so they have their good points and should be recognised as having done good but all we have comes via charity – Dogs, books to read, places to live in unless you are housed by the council or have been left a home, white canes and loads else besides and how many others can say that? Guide Dogs gets no state aid and I don’t think RNIB does either, to be fair. All that and when the NHS has failed some of us, we don’t even get recognised as casualties of that failure. As for why me, well it’s because I was there at the right place but at the wrong time and someone twiddled a knob or two and set the oxygen levels too high for my liking.

You may draw your own conclusions as to whether it’s a test, punishment for Karma, random or whatever. Meanwhile I will carry on doing the best I can in the circumstances, same as always because it isn’t over till the portly woman sings. I do wonder what life would have been like had things been different but realise it would have brought its particular set of joys and misery with it but if children are still being blinded in this way, they shouldn’t be and it needs to stop and it certainly needs to be acknowledged because it’s up there with the blood products scandal and the Thalidomide scandal as one of the NHS’s blunders and should be recognised as such and not swept under a bloody big carpet so if you want to know, it’s that bit that makes me cross, even more than living like this has ever done.