SA Weekend cover story, May 9, 2015.
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EVERY DAY, for hours on end, Amelia Hill sits inside her plain 4m x 4m room, its large galvanised-iron door closed against the outside world, and quietly plans her escape.
She has no television, no radio, no computer, no books or magazines. She sleeps on a metal cot. Her only interaction with visitors — the few she gets — is through the single glass sliding door that last slid open many years ago, and which has long since been permanently shut.
But for the large windows overlooking the lush Adelaide Hills cottage garden outside, her room would resemble a prison cell. But she is not a prisoner, not in the conventional sense anyway.
For the past six years, Amelia Hill has been held captive in her own home, and her jailer is one of the world’s strangest, least understood medical conditions.
Amelia Hill is allergic to modern life.
Look around you. Everything you see — your clothing, the chair you’re sitting on, even this magazine — are, in Amelia’s world, sources of unimaginable pain.
Yet this isn’t the tragic story of someone beaten by a disease the doctors can’t figure out. It’s about one woman’s inner strength and persistence in the face of overwhelming adversity. And how her determinedly positive outlook has helped get her to a place where she might, just might, be able to see a glimmer of light at the end of a very dark tunnel.
Amelia had always been a bright, happy child. Intelligent and pretty, with delicate features and long brunette hair. An Annesley College girl, she’d had plenty of friends, and dreamed of a career in fashion. Then when she was 14 her family moved house and her life began to turn upside down.
“That year we moved in there I was sick all the time, and by the end of that year I couldn’t move, couldn’t walk, couldn’t do anything,” she says.
“Basic tasks were suddenly a struggle. Walking, talking, eating, even breathing. I had low energy, couldn’t do things.
“I went to the doctor and they said ‘oh maybe you have a bit of asthma’, but I just never got better. I got progressively worse. No one could work out why these symptoms were there.”
As her friends discovered boys and dating, partied and planned for formals, Amelia slipped into social isolation, incapacitated by a mystery illness. Plagued by constant energy slumps, migraine headaches and breathlessness, she dropped out of school to study part-time. Her work fell behind, her friends withdrew.
Doctors were baffled. Test results and scans came back negative. According to all medical advice, she was a healthy girl — a healthy girl who sometimes couldn’t stand or get out of bed.
With no diagnosis, and therefore no treatment or cure, Amelia fought through her teens and twenties. She scored her dream job as a freelance stylist and magazine journalist, collaborating on fashion campaigns for clients such as Country Road and even started her own fashion label, Envious.
But sickness hung over her like a pall. She always felt tired. She endured nausea, fainting and splitting headaches, seemingly brought on by nothing. A normal life seemed more and more unattainable.
Then one night in 2008, on the eve of her 33rd birthday, everything came crashing down. “My body gave out, virtually overnight. That was it,” she says.
The rising young fashion designer was suddenly bedridden, too weak to sit up, wash, dress herself or even speak. Everything became a source of pain — her food, clothes, bed and beloved fashion magazines all started to make her inexplicably sick.
Smells would set her off — the scent of her neighbour’s cleaning products drifting in through the window would cause her throat to close up and leave her shaking in the corner of the room, drifting in and out of consciousness.
Even tap water became like poison, making showers an excruciating ordeal. Sleeping in a newly vacuumed house was enough to send her to the emergency room.
And then she became allergic to electricity. Most of us don’t register the constant buzz of electricity around us, radiating from our appliances, light bulbs and the wiring in our walls, but for Amelia it suddenly became a toxic force.
“I couldn’t even have the lights on, so I would just sit in the dark. I had a torch for emergencies, and that was how I lived every day. I had no contact with anyone, no one visited me, my parents just kept me alive, basically.”
Her mother Danija and stepfather David came by daily to care for her, washing her with purified water from a bucket, trying to feed her something, anything that wouldn’t make her sick.
“My airways burned all of the time. I was miserable, barely able to talk. My weight plummeted. I survived on just a handful of foods. I struggled to hold my body upright in a chair,” Amelia says.
“Even after years of fluctuating fatigue, I had never known weakness like this. Crippling. Honestly, I felt I would die.”
At just 33, Amelia was facing death from an illness she couldn’t even name. Then one night, in a bout of desperate loneliness, she turned on the television despite the pain it would cause her, and a reality show saved her life.
“It was The Bachelorette,” she laughs.
“Literally the moment I flicked it on, this guy was having a conversation and sharing his health journey. He was being treated for environmental illness, and part of it was all these symptoms that I just totally related with. There was some kind of ‘aha’ moment ... and I just knew that I had to pursue it.”
With help from her mum, Amelia found the man through Facebook and got a number for his US doctor.
“He was like, ‘Well you’ve had Multiple Chemical Sensitivity for ages. When did that begin for you?’,” she says.
“I was like, ‘What?’ I had never heard those words before, and it was this revelation. It all made sense. From there everything became clear.”
This is an extract from the full article. CLICK HERE to read the full story online
First published in SA Weekend, May 9, 2015.