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Saturday, October 18, 2008, 08:00
"This," she says, fiddling with the straps of one of the splints supporting her wrists, "is my party trick".
The splint comes off, and Jessica's wrist flops down like a broken twig, leaving her hand resting flat against her lower arm. It is an extraordinary sight. I try to do the same, but it is impossible.
"As you can see, my splints mean a lot to me," says Jessica, as she carefully fixes the splint back in to place.
It is an understatement typical of 19-year-old Jessica, who suffers from a progressive genetic condition called Hereditary Neuropathy with liability to Pressure Palsies (HNPP), which causes nerve damage and has already paralysed both her wrists, and left her blind and deaf on her left side.
A knock or strain can result in loss of movement for an indeterminate length of time. Jessica spent nine months in a wheelchair last year, after her left leg became paralysed following a night out, and she still needs a wheelchair for occasions involving a lot of standing or walking. Her wrists are paralysed now, but at one stage she had no movement in her arms from the shoulders down.
"I think I leant awkwardly on my elbow," says Jessica, who is studying for A-levels at City of Bristol College. "I'm not supposed to cross my legs or sit in one position for too long. Fortunately, I have a tendency to toss and turn in my sleep.
"The problem with nerve damage is it's such an unknown. I can do something like being out all night dancing and I'll be fine, but then I can get injured from something like sleeping in a bad position. No matter how much I try to take care of myself, there's no guarantee."
However, Jessica does not just have to face the challenges of the physical limitations resulting from her condition. She also has to cope with the unsympathetic attitudes of others to the fact that her disabilities are not easily visible. This problem even occurred when she took part in the TV series Britain's Missing Top Model that was screened on BBC3 in the summer, to find the nation's most promising disabled model.
"A lot of people who don't know me very well say I completely give in to disability," says Jessica, gazing at me with huge brown eyes, one of which is sightless. "When I went on the show, I thought we'd sort of bond as girls together in a similar situation but it wasn't like that. I did have a few issues with some of the others. One girl refused to open a bottle of water for me until she'd seen me try, but I wouldn't because I knew I'd hurt myself if I tried.
"I just asked one of the other girls to help me. It wasn't worth getting in to a row over when we were having to work and live together, 24 hours a day for three weeks.
"In fact, it was living together like that which was the hardest thing, rather than the modelling."
Jessica reached third place in the series, but was eliminated because judges were concerned that she would not have the stamina to cope with demanding professional photo shoots. Nevertheless, Jessica has since gone on to appear in the Make Your Mark show in London Fashion Week. She has also been booked to model for the Wheelie Chicks fashion range for women in wheelchairs, and will soon be appearing in a short film.
Her ambition is still to go to Durham University to do a combined honours arts degree, and then to become a film director. But for the moment, she is enjoying doing modelling work as well as studying for A-levels.
She is also pleased to be proving the judges wrong. "What about those anorexic models? I doubt they've got much stamina," she retorts. "Anyway, even though I might take a long time to produce something, and I might need some help, it's what you produce in the end that matters."
Jessica believes there are parallels between being disabled and being a supermodel. She explains: "Being disabled is like being very famous, as you need that same kind of care. If Naomi Campbell wants to sit down then they let her sit down. It's like that when you're disabled."
We are talking in the upstairs restaurant at Goldbrick House on Park Street, which I had booked because it is close to City of Bristol College. After making the reservation, I almost cancelled because I was worried about Jessica managing the stairs. However, she was adamant that she would cope – and indeed she does. But our lunch provides an insight into how Jessica spends her life trying to cope with everyday situations that most people barely have to think about. It turns out that Jessica has bronchitis, and although she manages to get up the stairs, she has to use an inhaler the moment she sits down.
"I'm very susceptible to infection as the intercostal muscles in my chest have wasted, so I can't breathe properly into my lungs. I just take shallow breaths. My brother will have a cold for three days, and I'll go down with bronchitis," says Jessica, who lives in a 300-year-old house in Kingsweston with her parents – Derek, a film producer, and Lee a print maker – and her younger brother Jonas, aged 14.
Jessica speaks of her condition in a matter-of-fact way, without self pity. She has her knife and fork balanced between her fingers, as she cannot use her thumbs to hold the cutlery.
"I just have to work around everything," she says. That is why we are sitting opposite each other, so Jessica can lip read if she cannot hear what I am saying. Not only is she deaf and blind on her left side, but she also has no sensation in her face.
"The summer before last I had an awful migraine all day. It got worse and worse and went on into the night," she recalls. "It was a searing pain – like someone jabbing a hot poker into my eye – and my vision fizzled out. It was so incredibly painful, I was writhing around and my dad had to hold me down. It was one of those things. They can't explain why. There's nothing wrong with my eyes, it's as if there has been some sort of odd short circuit in my brain."
Jessica recalls how she was always being ill and getting injured as a child. Her mother believed something was wrong, but doctors could never give an explanation.
The diagnosis of HNPP was made about two years ago, after Jessica's left arm became inexplicably paralysed.
"I was doing my A/S maths exam, and my hand started to tingle," says Jessica. "The following day my entire left arm was paralysed. Having had so many injuries before, we weren't too worried and left it four or five days before going to hospital. The doctors were clearly concerned it could be something serious and did blood tests.
"Five weeks later, they said I had this genetic condition. I'm one of the most extreme cases ever recorded, and my condition is early onset. In a way, it was a relief to know what was wrong. But it's hard knowing you can never achieve your full potential. It's a progressive condition, and there's nothing they can really do.
"My doctors have been really helpful since I was diagnosed, but there's no miracle drug."
The pink make-up bag in which Jessica keeps her inhaler also contains various tablets, instead of just make-up.
Jessica says: "I have to take a lot of tablets for the pain, about six or seven a day. Plus, at the moment, I'm on antibiotics for bronchitis, and having to use an inhaler. I've always got a dry mouth, which I think is because of all the tablets."
As a former pupil of the Quaker boarding school Sidcot, in Somerset, Jessica is a devout Quaker.
Not only has her faith helped to sustain her following her diagnosis, but her Quaker friends have been very supportive.
"When I got ill a lot of people didn't know how to be around me, and so they kind of avoided me," says Jessica, "but my Quaker friends have really been there for me.
"It's quite hard for people to grasp at first what is wrong with me. I get asked about my splints all the time – everyone seems to assume I've had some sort of injury. It's hard for people, as disability is something people tend to shy away from, but it isn't catching."
Yet Jessica believes that far from blighting her life, her disability has been surprisingly empowering in some ways.
"The things I achieve now mean more to me than things I achieved before," she says. "I used to worry about getting a bad grade. Anything below an A wasn't good enough – now it's just good to be able to sit the exam. Even going to lessons is special to me. When you've been very ill and have been denied things it makes you want them all the more, and being close to losing something makes you realise how important it is.
"It is hard. Everyone wants to be able to plan their future, and I can't do that. But even though I don't have health, I have happiness, and amazing friends who look after me, and my wonderful family who do so much for me and mean everything to me. I'm not going to give up on my dreams. I always wanted to go to Durham University, and I think I'm still going to do it.
"I'm just going to need a little bit of help getting there."
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