Accepting the unacceptable

“It was like someone had dropped a black cage over me and all I could see was darkness”. That was the recollection of a war veteran at a fundraising event myself and my hubby attended for Blind Veterans UK. He was in a building on duty for his boss when the explosion happened. He lost half of his right arm, some of his finger on his left-hand, most of his hearing and virtually all of his sight. The guy next to him died.

Because of this incident he didn’t get to see his 2 children when they were born and watch them grow up as his wife was four months pregnant when the explosion happened. Everything after that changed his life and he had to learn to live in darkness and rely on people, devices and guide dogs to move around. On occasions when he tried to assert independence, humiliating things would happen, like walking in to a river or ending up in someone’s back garden.

His carer said “life is like that, you either sink or swim”.

Blind Veterans UK sweeps up those who have found their life transformed by blindness and gives the support they need to live in their new reality. One of the biggest challenges  in having a disability is to accept it when life seems completely unacceptable.

For more information on Blind Veterans UK click here.

This blog is for Unicef.

Thanks for reading.

 

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Happiness is perfect yet perfect isnt happy

I read an article by actress and stand-up comedian Francesca Martinez. It was brilliant and inspired me to order her book ‘What the f*** is normal?’ It also made me re-evaluate some of my views, particularly relating to parenting disabled children. I had always thought that parenting a disabled child overwhelming, although I could never have brought myself to abort a baby based on a predicted disability forecast by health professionals – a predicament that would have no doubt finished our marriage. My husband’s views on bringing up a disabled child are in contrary to his own childhood, which was marred by severe hearing loss due to brain damage.

Francesca looks at it from a different angle, ‘Most parents-to-be still fear that their beloved Newborn will turn out to be -oh, the horror – disabled. My personal fear is that my future child will turn out to be unhappy. I don’t care what he or she can or can’t do, how they talk or walk or how many fingers and toes they have. Because I don’t think that is a good indicator of happiness. Forget aborting babies because of the suffering they might endure. What about the suffering they will create? Wouldn’t it make sense to develop a test to check for the arms-dealer gene, the advertising executive gene, the corporate-overlord gene, or the gossip-magazine editor gene? That would eliminate quite a lot of suffering.’

I wish I had read Francesca’s article in The Guardian before I passed judgement on my daughter’s maths test mark. She described the scale of marks to me with 6 being the top score. I cant pretend that I was disappointed she had got a 3, they then get a sub mark in the form of letters, with A being the lowest and D being the top. Her total mark was 3B. I couldn’t hold back this disappointment and said that I didn’t  think her mark was ‘that good’ and that if she wanted to get into boarding school (her wish not mine) she was going to need to get a 5 or 6. What made me suddenly turn into a mother with the support and encouragement skills of an amoeba? Why did I turn into one of those pushy mothers who focus so much on grades they don’t recognise their daughter’s anorexia and anxiety attacks because of this unnecessary pressure to perform. Most parents say they just want their child to be happy, but also gets lots of qualifications and a high-earning job, the stress of which will put them into an early grave? I managed to halt the destructive path I was proceeding down when she explained to me that she had done her best and I later described it to Daddy in front of her as a ‘good’ mark, to which he said, ‘well that’s OK, it’s average’ gah! So I quickly added that no doubt Mummy and Daddy would have scored a 0 or a 1 if we had taken the same test at her age. Then I thought about the research that found those  who doubt their own maths abilities pass this down to their children. A fine case of how not to support the school life of an 8 year old. Next time I will apply duck tape to our mouths.

So tests are meant to give the teachers a steer on how the child is progressing and what additional support the child needs. I just wish teachers would give parents a steer  as to how we handle the news of the scores and whether we do nothing, praise regardless or encourage to try harder.

I agree with Francesca that kids and adults should just aim to be happy, so why as parents are we so f***in obsessed with perfection, when we are anything but.

I am blogging for Unicef.

Thanks for reading.

 

Arrogance and other mistaken characteristics of the hard of hearing

So today I’m going to talk about the negatives of hearing loss.

First is how the hell it happened in the first place – it is annoying not knowing. I didnt discover I had hearing loss until I was 10 years old. I was on a school trip in Germany and I was staying in a hotel. My friend and I were un-packing in our room and the telephone started to ring. I answered it and put it to my left ear like I always had done. After the call, my friend said “why do you put the phone to your left ear when you are right-handed?” I replied “because I can’t hear them speaking if I put it on my right ear”. I had thought (like most children do) that because I couldnt hear in my right ear everyone else had the same problem. My friend’s puzzled face prompted me to tell my Mum about it when I got back home. She took me straight to the Docs and then a few referalls later and a couple of trips to ENT in London (ear, nose and throat) and I was classified as hard of hearing.

There were lots of theories as to why it had happened. The main one being that an illness when I was very young affected the cilia (tiny hairs) along my inner ear that are essential to help noise vibrate around the ear drum and that will explain why I can’t hear despite having a perfectly formed inner ear. It also could have been a bad reaction to an innoculation. No-one really knows why my husband is hard of hearing either and his theory is oxygen starvation when he was born. We will never really know. His was much worse though because it affected his speech and school was very hard for him. With me, because of the innoculation theory, I have serious reservations about the MMR jab in children and I am doing research in to it at the moment to establish how to protect my baby son – but this is a huuuge topic – so will do a separate post on this in the New Year.

Perhaps the biggest down-side to hearing loss is socially. I find it very hard to hear everyone in a party situation or when we are sitting down at dinner. I have to make sure that I am on the end of the table with my right ear facing the end so that I am able to hear people. I have lost count of the number of times I have turned to my right to find a person standing next to me with a puzzled and expectant expression. They have obviously asked me a question or spoken to me and expected a response despite the fact that I haven’t heard them – but they aren’t to know so what do I do – wear a badge? I could wear my hearing aid but i don’t for reasons discussed in my previous post. Over the years I must have unwittingly insulted quite a few people who may have thought I was ignoring them because I didn’t hear them.

Another big down-side is crossing the road. If you cover one eye and then try to touch something it is very difficult to judge how close it is to you and you end up thinking you have touched it when you still have a way to go – try it now. This is the same when one ear doesn’t work as well as the other – although you can hear the sound, you can’t judge where it is coming from until you actually see the source of the sound. This means I am rubbish at telling which direction a car is coming from if I hear an engine when about to cross a road. I also don’t think I would make a very good paratrooper or spy….oh well.

However i like being slightly wonky – its boring being perfect. I often joke that I should have a right body transplant because it isn’t just the ear that doesn’t work. My right shoulder is shorter than the other because of a riding accident and my right leg is full of varicose veins (sorry I know that isn’t pleasant) due to bursting a blood vessel during childbirth. The right side of my pelvis is a bit stiff too because i carry my baby boy on my left-side.

There have been some comical moments because of my wonky ear, which I will mention every now and then in future blog posts. Tomorrow will be my last blog post of 2012 as we will be leaving to spend Christmas on a snowy welsh mountain and i am not sure about the wi fi up there. So tomorrow i will do a little summary of the best bits of 2012 and wish you all a very happy christmas and new year.

Unicef will benefit from my down-time fee over the next two weeks, which will boost the coffers of my fundraising campaign – the reason why i blog every day. If you are able to support my efforts, please visit my page on the Unicef site.

Thanks for reading.