Vanessa Baxter Jones aka Nessa

Ven has left us now but we will keep her voice going as best as we can. Ven died of liver cancer in 2006….. her space here remains and things she wrote about her life will be posted, when we finally sort it all out.

VEN’S VOICE:

Life as I knew it ended forever in early hours of march 16, 2000 in Tirrana, the capital of Albania. CRASH! In an instant everything changed for ever. I was doing voluntary work with kosovan refugees and helping school children to make anti gun video films. It was my idel type of work and I was very happy, then, I fell 60 ft out of a window, how is not known as it was 3 am I sustained traumatic head ingury

Everything that happened from that moment has brought me here to this moment. That was three years ago, I spent almost two years in rookwood hospital, a rehabilitation centre for head and spinal injuries in Cardiff, then to moved into my own flat. The “where will I live” question hung over me for quite some time in hospital. I couldn’t live with my mum, as she lives is a second floor flat. I was on a housing waiting list forever and my mum decided to buy a flat for me. I could more or less choose, instead of having to accept some awful council flat on an out of the.

When I was first in hospital, emerging from a coma, I couldn’t sit up talk, I didn’t have any bladder or bowel function, I couldn’t even eat or do anything at all for myself. Now I can do everything but cook, clean and walk. I am able to walk about 20 meters but with help. I have two carers though I call them PA personal assistants as they don’t have to care for me, just assist me to do things. My time in hospital was like existing in an institution, each day felt like a thousand years but I have adapted now to the fact that time is made from different fibre now. Slowness is the name of the game!

my flat has become my sanctuary. I have just had some grant work done to the flat to adapt it more to my needs. I have become extremely house proud, not that I am merticlouse about cleaning, just that I want my things to look nice

I am still quite new to suddenly being a disable person. I know from personal experience what it feel like to be viewed and treated like a disabled person, it’s a distant memory just being invisible. But the difficulties encountered daily, whatever degree of disability you have are things I encounter each day.

Taking my dog for a walk involves negociating pavements, people, cars, rain then trying to catch your dog when shes run off! Not so straight forward if you have to do it from a wheel chair! I have a bent calified left elbow, and a spastic uncoordinated hand. Therefore I have an electric wheel chair which I control from my not much more coordinated right hand.

Getting a pint of milk from the courner shop. I cant get inside so I have to ask someone to get it, they usually don’t understand me so I have to repeat it “would you mind getting me some milk” in have got disarthur, making my speech slow and slurred and difficult to understand. Most people have to say “pardon” or “what” several times to me. I think people who know me realize I don’t have any mental proplems but all those people who I ask for milk or catch my dog, now that’s a different story. Not only are they faced with a wheelchair but a speech problem!! I get spoken to as if I haven’t got a brain. This has been one of the hardest aspects of my disability to deal with. Then I wait outside the shop for my milk!

I recently went away to Thailand for seven weeks. It originated because I needed to be out of the property when the grant work was going on. There is an article about my adventur away to forign lands.MAKE A LINK.

Now I live on my own with my little dog. I do as much physical activity as possible, going to the gym, swimming, a pillates course, and a yoga class at home. I spend the rest of my time reading and writing on my computor. I don’t have any friends close by, but most of them are on email, so we stay in touch. Life as I knew it has changed for me beyond recognition, but ive got to keep thinking I am now on a different path, but this is all part of the adventure called life.

Written in 2003 by Vanessa Baxter Jones