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Trapped in her room for over 1000 days
Monday 6 February 2012
From South Australia's Sunday Mail:
Trapped in her room for over 1000 days
MINUTE after minute, hour after hour, for more than 1000 interminable days, Amelia Hill has watched the world go by from behind a plate of glass.
The 36-year-old's life has narrowed to this tiny space, a room that could be crossed in five long strides - if she could manage them.
A day bed sits in front of the couch, for the days when she is just too weak to sit.
A kitchenette lies at the other end; on a good day, she can cut carrots at the small bench. On a bad day, she can barely draw breath.
The shelves are empty of books, the kitchen doesn't hold any of her favourite foods, the television is almost always off.
Some people have accused her of faking an illness, of being crazy, and have told her to pull herself together.
Others assume she is "allergic to the 21st century", and wonder why she doesn't just leave her granny flat in Stirling and move to Kangaroo Island or some other rural idyll.
If only it were that simple.
Just over three years ago, while working as a magazine stylist and writer for titles such as Australian House & Garden, Amelia's health crashed. She tried to soldier on. She had plans. She was going to head to New York. She had her own fashion label, Envious, an irony not lost on her now.
She was also going to have a family one day. Now she can't even breathe the air outside.
Amelia has reactive airway disease and multiple chemical sensitivity, environmental sicknesses which cause her to have extreme reactions to almost everything we take for granted.
Gone are the books she used to love - the smell of print triggers a terrible respiratory reaction.
Gone are the visits from friends - the smallest amount of fragrance or washing liquid can affect her. More than half an hour of TV a day can cause a health crisis.
Most foods can't be tolerated, she can't speak on the phone, can't turn on a heater when she is cold, can't visit the hospital because of all the different chemicals in use.
She can't even hug her mum.
While not a lot is known in Australia about these symptoms, overseas research suggests they can be caused by a "chemical injury", such as breathing in toxic fumes, and blood tests point to a genetic marker in Amelia's blood which shows her body is unable to process toxins like other people.
Unable to speak face-to-face, Amelia answers emailed questions read to her by mum Danija Hill-Houston with a pencil and piece of paper. She can't use a pen because the fumes make her sick.
"A year ago, I was able to use my computer, read books, wash my own hair, chop vegies for dinner and sit outside and breathe the air," she said.
"A good day for me now is I can dress myself, walk to the bathroom, watch an hour of TV, turn on my iPhone for literally 30 seconds to check for any messages.
"Usually, I spend half the day lying in bed and half sitting in a chair.
"On a bad day, I'm totally bed-bound, struggling to breathe, talk, move, no TV, no phone, intensive care needed from carers just to survive."
While many suffer from relatively mild symptoms such as headaches, fatigue and nausea, others like Amelia have respiratory issues, asthma, anaphylactic events, seizures. Some die. And that is what her mother fears more than anything.
The family now feels that Amelia's only hope is to move to a "safe house", a place free from chemicals and toxins, household cleaners and mould spores, a place where her body can try to recover.
For more than eight months they have searched for a suitable home; Mrs Hill-Houston calls it her "impossible quest".
"Most places are too expensive or, more importantly, environmentally unhealthy," she said.
"I'm heartbroken that my beautiful, talented daughter is struggling to stay alive and I'm terrified she is going to die because no one can help her.
"A mother should be able to fix the problem and I can't."
But even now, Amelia counts herself luckier than some. She knows a girl overseas who can't tolerate any fabrics and has slept on a fold-out lounge with no blankets for years.
Another cannot tolerate any electricity - so lives by torchlight - while another has seizures every time they are exposed to the slightest hint of washing powder. A sufferer in Canberra recently took her own life.
"I want to bring publicity to those people who can't speak for themselves," she said. "Who are in their room alone, isolated, who can't see anyone."
For her 35th birthday last year, Amelia's mum baked her a flour-free cupcake with a candle on top. It couldn't be lit but they could pretend.
She turned 36 last month. This year, her body couldn't even tolerate that.
More than anything, she wants to see 37.
"I miss things like going out to visit with your girlfriends, running on the beach, and books - as a writer and art lover, I desperately miss books of every kind," she said.
"But at the end of the day, what I really miss is human contact. Long talks, smiles on faces, hugs.
"I miss not being able to pursue any of the dreams I had for my life, and I long for the day when my every minute is not about survival and staying alive. To just live simply and enjoy life again."
Learn more about Amelia's story on Today Tonight at 6.30pm tomorrow [Monday 6 February 2012]. The Sunday Mail and Today Tonight are seeking anyone who thinks they can help Amelia find a suitable place to live. Go to Facebook and search for the group "Heal Amelia's Life".
The above originally appeared here.
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