PIP’S STORY

pip_e1_lightwriterMay 24th 1996 was a day that changed my life. Practically all plans, hopes and dreams for the future were suddenly snatched from my capability. Now I am disabled. Disabled… not sure I have come to terms with it, even after so long. I don’t fall into the stereotypical picture of disability, I am not in a wheelchair, I am not deaf and although my vision isn’t as good as it was, I am not blind. Except for some difficulties in coordination, trouble with swallowing, controlling my mouth and palsy of my right eye, I am able bodied. Oh yeah and I can’t talk, well, I’m dysarthric…Okay, so I have some problems, but I have had to cope. Actually, I don’t think of myself as disabled, I feel like I’m cheating when I’m around other disabled people.

I look “normal” at a glance and it’s hard seeing the change in people’s faces when they realise I’m not “normal”. It isn’t something I can avoid really, with my lack of speech, slight facial differences and my little dribbling problem.

Before that date I was a lively, loud, 18 year old girl. My friend Katy and I were inseparable, always joking around and often compared to Patsy and Edina of “Absolutely Fabulous” fame.

To cut the long story short, I was on study leave from school, preparing for my A level exams. I’d been allowed to drive my step father’s Citroen Xantia – I was most amazed by this show of trust and faith. Katy was also in school that day and we had a plan…it involved both of us driving back to my place in separate cars where I would return the Xantia and then Katy would give me a ride back to her place and then we’d hit the town.

We were driving down the lane to my village, Katy was in front at first, but then I had the idea that I would show off some…I overtook her and sped off. I used to fancy myself as a pretty good driver so I was fairly speeding along, it was all going fine, I must have felt good, I was going fast…. I’d been told “never brake on a bend”, yet something must have gone wrong and I must have done just that, judging from the skid marks on the road. I then went off into a field, hit a tree, spun and hit another tree, then the car rolled over.

The police were able to tell roughly what speed I had been driving, from the tyre marks on the road. They calculated that I was travelling at just over a hundred miles per hour. (This was fairly stupid seeing it was on a rural village road) I don’t remember anything about the accident, this is just what Katy and my mum have told me.

I was taken to the casualty department at York hospital first, where the doctors told my mum I would die. Then I had to go to Leeds casualty as the CAT scan at York wasn’t working. Everyone said the same thing, that I would die.

Later, (when, surprisingly enough… I hadn’t actually died) there was a little problem, my Mum and Richard (step father) had bought a house in Herefordshire, the plan had been to move the next week, after my A levels, but I then had the accident before said exams – thus didn’t sit them and of course couldn’t very well move the next week. However, as goes with buying and selling houses, we were contracted to leave Yorkshire…Mum stayed with me while Richard moved and readied our new home, and after a while I was moved (still in coma) to Hereford County Hospital.

Finally, I went to the Head Injury Unit in Bath, where I stayed until 22nd November 1996. I can only remember Bath Hospital, I had been coming out of my 7 week coma at Hereford, but can only remember waking up one day in hospital, in the city of Bath. I couldn’t speak, wasn’t safe to walk, so had to stay in bed all day, plus I was hitched up to a feeding pump, which restricted me a lot. It was quite depressing, having a plastic tube sticking into my tummy, not tasting anything…

I remained “Nil by mouth” until Easter of ’97’, when I cheated one day and had tiny mouthfuls of mashed up food, and hurrah, that September I had my PEG (gastrostomy) removed.

Now I have my own flat in Hereford city centre, am enjoying it too…. Mostly. I know I am very lucky, surviving a serious road traffic accident, living independently, still all here ….. the list goes on, and yet, I can’t change what happened/who I am/ what I have become …. In fact, I sometimes forget… A lot of people know me (a few of them well enough to see past my disability – I hope!) But it gets….. tiring (for want of better word) I mean, people always tell me: “you are so strong and tenacious” People see me as “Pip, the girl who can’t talk, but she’ s always smiling and happy, she manages just fine with that wonderful Lightwriter…… what a godsend that machine is” – Yeah, it is good… I’d never manage without, but you try hauling that thing round everywhere with you…Gets to be a bit of a pain really.

Often patronised, but I realise with the best intentions, by some who don’t know better… I can’t tell them any different, people rarely have much time or patience so I can get misinterpreted or seen as a fool, thus treated like one. Isn’t it commonly known to never judge a book by its’ cover? Get hyper sensitive to what others think of me when out, trying to eat or drink, some days are crap, I have times when I would just love to give up. But that’s just not possible, I never give up.

Hurrah! I got a job at ARCOS!!! It confirmed my independence, there ain’t many places that would employ someone who can’t talk, but everyone here is way cool, and I seriously doubt many others could or want to accept/relate to how your life changes after brain injury.

People don’t seem to accept that we are all different, different personalities, different thoughts etc. So then why should we all be categorised as “weirdo’s” with brain damage, when all brain injuries affect different people in different ways, in fact some of us still possess the same cognitive powers we had before we became head injured, even being more clever than some?! But there is a Stigma attached to being brain injured, It doesn’t matter how badly affected or not, you are still one of those people who aren’t quite right, the stereotypical view of which being you’re infected somehow and therefore to be avoided.

So, the future… I am 24 now, and next May it will be 6 years since my accident. I am still trying to recover, It’s extremely frustrating knowing I will never recover fully – I often despair. I’ve had to give up so much. There are so many things I wish I could still do, I have this dream where people could cure me, and hang on to the hope I’ll be able to talk again someday….But with or without my voice, I just want to be treated like a normal person, I have just lost my voice, not my mind.

PIP DOES OZ!! (Well… sort of… not very well actually…)

It started out as a kind of joke, when a good friend who was travelling round the world invited me to go stay with her while she was in Australia. I had failed miserably to pluck up the courage to go and visit Libby when she lived a few miles away in Aylesbury! Before I realised it, I was on my way to Melbourne. I was sooo nervous, I mean, I have a dodgy swallow, which made drinking water difficult and embarrassing, I was surrounded by people, strangers who couldn’t be expected to have met many people like me before, but I really had a cool flight. I flew with Quantas, the attendants were all so helpful and pretty cool, like they found me a row of empty seats that I could take over and sleep on… And they would take the time to chat with me and were patient while I talked to them on my Lightwriter.

2006

Hello hello! Sorry about the gap, but a lot has been happening. not sure I can get it all down is a sensical fashion actually. while I was working at ARCOS I became good friends with a couple who had a holistic therapy shop down my street in Hereford. (Healing Earth has now moved across town a bit) Anyway, it began with Pete and Nicky taking me out to Bristol to parties put on by Tribe of Frog, Amazing nights of UV décor and fab music. This became a fairly regular thing (except for the months when TOF went partying to Ibiza) Until one night a couple of years later, Nov 31st 02 I met John. It so nearly didn’t happen, he thought I was ignoring him! But later on we were dancing again and he signalled did I want a drink so we found space to rest and then I went and got my lightwriter from Nicky. Walking back to him I felt awful, just before a boy had showed interest, but as soon as it became apparent I had something wrong with me he scarpered, (thank goodness he did in hindsight!) Anyway, I told John I couldn’t talk and why, expecting him to be off, but he just carried on talking to me! I couldn’t quite take it in, we spent the rest of the night sat in a corner of the chill out, talking. After that night, we spent most weekends together, but the distance was a pain, he worked in Reading, but had a place in Bristol to escape to. It took a month but on new years eve John told me he had fallen in love with me. He sold his place in Bristol to pay his mortgage in Reading and after ages of complaining to anyone who would listen about how far away he was, I moved in with him, sadly leaving ARCOS though.

pip_marriage

We were married on September 18th ’04, oh I missed something, I was going nuts at our home in Reading while John worked all week, so I started going to Temple Décor which was a co. owned by John’s friend and helped to make an ice palace (not from ice though, they were icicles made from net and rings of wire) then john began encouraging me to study art again, and I enrolled at Reading Tech on an access to art course, applying to Bristol UWE as we sold up in Reading and moved back to Bristol. So we were married on the 18th Sept 2004, Being unconventional though, we had our honeymoon first, as I started Uni on the 20th. We had a registry office do, and then wanting a bit of ceremony, Pete did a handfasting for us. PLUS I said my vows.. not a dry eye in the room, especially my mum. Now about to start my final year at Uni, studying Drawing and Applied Arts, in 1st year we were given the project title “communication” for this I drew myself! People have said how I speak volumes through expression, so I tried to capture one that said it all about my not being able to talk. (I did feel a bit silly holding a mirror up and putting on that face as I drew).

But anyway, that seems ages ago now, more than a year of study and progressing my drawing, I am etching now, a very long process that can become maddening. During term especially I live with black fingers and smell of white spirit! Life is pretty good now, (apart from worrying about the dissertation I have to write!) Yes I still get down at times, but John is amazing, even when I get angry and throw things. I love him so much. 10 years have come and gone, here I am a married woman. I never imagined I’d say that. Probably left loads of stuff out but that’s the past.

I stayed in Oz for 4 weeks, But I must admit, I didn’t end up seeing/doing that much, which I regret now. My nerves got in the way, it was the first time I had been on holiday alone, and half way round the world too… However, I did a bit, had amazing experiences and despite a few little personality clashes/tantrums and tears, I returned home (Plane full, no chance of my own row of seats) with good memories of a fab adventure.