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See who I am – part one

1 September 2011

Seventeen-year-old Alys Wall from a small village on the outskirts of Cardiff has a rare condition that has left her partially sighted.  Over the next two days she will describe what it has been like growing up with the condition, her hopes and fears for the future and the impact the Big Lottery Fund will make on disabled young people through the new £12 million Bright New Futures programme that she helped launch.

When you first meet me or happen to pass me in the street, you wouldn’t think that there was anything different about me to the next girl that you meet.  I appear to be the same as everyone else – there’s nothing to hint that I have a disability that’s changed both mine and my family’s life to the extreme.

On paper I’m registered partially sighted and disabled, but I’d rather not be defined by that.  I’d much rather think of myself as being ‘exactly like everyone else but somewhat more challenged’ rather than disabled.  I think that defines me much better.

The doctors say I have bilateral optic nerve atrophy.  To try and explain it to you simply, the optic nerve, which is at the back of the eye, carries images of what you see to your brain.  The optic nerve is just like a cable filled with millions of tiny electrical fibres, each carrying information on what you’re seeing.

The brain then turns all of this information into images.  In my case, the fibres have become, and are continuing to be damaged so my vision is badly affected and blurred.

I describe what I can see like looking through a fogged up car window.  You’re perfectly fine to drive, but you’d rather get rid of the mist. Well, it’s exactly the same with my vision, I’m alright getting around, but I’d much prefer if I didn’t have it – but I unfortunately I’m stuck with it!

This disease is caused by a defect in either of two genes, OPA1 or OPA3, but being the awkward girl that I am, neither of mine are defective so the doctors at the hospital are baffled by me.

To make me even more a one of a kind, this disease mostly affects males, and, well, I’m a female and I was diagnosed with this condition just after my 11th birthday.

Are you still with me? It’s fine, I can hardly get my head around it myself and I’m the one with it!

I’m also completely colour blind.  This doesn’t mean that I can only see black and white, which most people assume. Explaining my colour blindness is difficult.  I can see colours, but in different shades to what you would see, and I find it hard to define colours when they’re in a group and some colours – well I just can’t see them at all!

When I tell people they become fascinated with me and put me through an intense quiz on what colours I can and can’t see. “So what’s colour is this? …OK then, well what colour is this then?” So now, I usually leave that detail out.

As if I didn’t have enough on my plate already, to top it all off I’m also sensitive to light and I suffer from daily migraine headaches.  The light, whether it be dull lighting in shops or hospitals, trigger migraines easily for me.

My more severe migraines make me feel as if my brain is going to fall out of my head and can last from half an hour to a few days where I have to retreat to sleeping it off.

So, just after my 11th birthday I happened to have an eye test appointment at my regular opticians coming up, but my mum thought she would kill two birds with one stone, by getting some food shopping in at Tesco’s and getting me tested there at the same time. She’s good like that.

Well, we both didn’t know that we would be living in that opticians for the next week did we!  After seeing numerous opticians, I was sent to the hospital as an ‘emergency’ because they were stumped.  My poor mum. All she wanted was some bread and milk and ended up coming out with a disabled child.

It was there in the hospital after months and months of tests (you name it I’ve done it) that I was diagnosed with bilateral optic nerve atrophy, and was told that there’s nothing that they can do to cure it and that they don’t even know what the diagnosis will be like in the long run for me, whether it be that I have sight, or I lose it all together.

Since being diagnosed and being told that one of the diagnoses might be blindness not once have I cried for myself.  I’ve never known anything else but to get on with it and don’t dwell on what’s happened.  When I wake up, that’s what I see for the day – and if the next day I see differently, well there we go.

In my opinion, when having a disability you can’t be soft and sensitive about it.  If anything you need to grow a tough skin because you’re going to be faced with a rollercoaster ride of challenges, disappointments, and emotions throughout your life.

Read the second part of Alys’ blog tomorrow

To find out more about the Big Lottery Fund’s Bright New Futures visit http://www.biglotteryfund.org.uk/brightnewfutures

Podcast

Listen to an interview Alys did with the south Wales-based charity The Green Valley Centre while she was on work experience at the Big Lottery Fund. It is a four-and-a-half-acre community green space in Bryncynon offering lifelong learning and recreational facilities to do with nature, conservation, environmental awareness and sustainable living. A two-acre horticultural area has also been developed to provide healthy, affordable and locally grown food to people on low incomes, and acts as a training facility. The project received £266,541 from the Big Lottery Fund.

One Comment leave one →
  1. angharad permalink
    5 September 2011 4:36 pm

    we love you alys (why didn’tyou tell us you were writing a blog?) angharad xx

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