So how exactly does Erb's Palsy affect my life?
I have to think carefully about this because my first reply is that it doesn't, that I never notice it because I have had an impairment in my arm all my life and have learned to live with it: as I have learned any skill it is by incorporating the needs of my Erb's arm into it. There has never been a time - at least since birth - when I had the full use of my left arm so, unlike people who have sustained an injury in an accident for example, I know no different.
But of course the impairment in my arm has affected my life and the way I live it day to day.
I can remember in my early childhood being encourged to exercise my arm and being stubbornly resistant. None of my friends had to do exercises, so why should I? Why indeed, my mother probably thought, and let me be.
One of the first occasions on which I remember my arm being a problem was learning to play tennis. Although not a great sportswoman - as much due to my build and personality as to my arm - I had coped happily with rounders (the bat is held in both hands) table tennis (bat held in right hand and left hand simply has to hold the ping pong ball) and hockey. Tennis was fine until I learned to serve. The motion of throwing the tennis ball into the air ready to strike with the racket was impossible for me, since my Erb's hand refuses to rotate any further than a vertical plane, with the palm facing inwards. Throwing the ball up demands a palm-upwards posture.
So I developed my own style of serve, in which I held the ball with my hand facing downwards, and then flicked the hand back so the the ball was propelled in an upwards direction. Not as powerful as the correct movement, but it got the ball more or less where I wanted it to go. I have no memory of speaking to anyone about this - the teacher either failed to notice that I was doing it differently or - more likely - left me to find my own way through the challenge.
The next problem wa drying my hair - I could hold the hairdryer in my right hand or I could brush my hair with my right hanbd - neither was possible with a left arm which refused to move above shoulder height under its own steam.
I got round it by positioning the brush with my right hand, transferring it to my left and then picking up the dryer. Until my mother bought me a hair dryer with a brush attachment - it was, typically, her who felt upset by my inability to manipulate brush and dryer properly rather than me.
At no point do I ever remember being bullied about my arm. Yes, there were bullies in school and like many children I was picked on at times, but it was for completely other things. Very few people ever mentioned my impaired movement and when I spoke to close friends most said they had never noticed it - they may have thought I approached some tasks rather awkwardly but they thought that was just me. One boyfriend, when I shared the story of my birth, remarked: 'I did notice that your arm was a bit awkward when you do certain things, but I thought it was because you have big boobs and you have had to work round them!'
I know there are a whole range of severities of injury that come under the Erb's umbrella, and many sufferers will be more or less affected than me, but I have never really thought of myself as disabled in any way, and maybe this in itself has helped me cope.
As I have recounted above, I was taken for physiotherapy for the first two years of my life and my parents spent many distressing hours manipulating my arm to try to encourage the greatest movement and flexibility possble, and they did a brilliant job.
I understand that nowadays surgery is often performed to release the joint and aid movement: this was never an option offered to my parents, and I can't say whether I would have been a good candidate for a surgical procedure and what the outcome might have been. At least the parents of today seem to have access to better information about the range of options open to them, although of course this brings with it the responsibility to choose the way forward for their own child and the pressure of wondering whether the path they choose is really the best possible option for their little one.
Any childhood trauma is always going to impact just as much as, if not more on the parents than the child as I know from the time when my own son broke his ankle. It was him who had to undergo an operation to pin the broken bone, but it was me who bore the anxiety and hurt of seeing my baby - I use the term loosely as he was a strapping six foot tall fifteen year old at the time - suffer. When they had to inject him, knowing how scared he is of needles, I could have wept, and more than once I wished fervently that it could have been me rather than him going through the pain and trauma of an operation. In comparison, having a major operation myself was a breeze.
So I fully understand any parent who decides not to put their child through surgery, either because of the temporary suffering it will cause, or so that they can feel as normal as possible. Equally, I admire those who choose this route because they believe and hope it will give their child the best possible quality of life, whatever trauma that path may involve.
In some ways though, I am relieved that my parents did not have to make such choices, even though it is tempting to wonder what the outcomes would have been.
After the programme referred to in the last post, I was moved to look on the internet for information about Erb's Palsy, whiich led me to a brilliant support group, whose website can be found here:
http://www.erbspalsygroup.co.uk
It was through reading about the experiences of members of this group that I learned that my experience is nowhere near as unusual as I had supposed; that the birth injury that causes Erb's Palsy is recognised and sadly is still happening today. There are mothers and fathers with young children and tiny babies having to come to terms with the heartbreak that my own parents faced fifty five years ago.
Wouldn't you think that the condition could be avoided nowadays with education, care and awareness raising?
No comments:
Post a Comment