Interview
As the showjumper prepares to launch her new movie, The Dark Horse, her family lives with the harrowing reality of having to measure her vital life signs on a regular basis. She tells Julie Harding about living with the rare Ehlers-danlos syndrome
Ashleigh Harley talks about the trauma and triumphs of managing her showjumping career with debilitating Ehlers-danlos syndrome
ASHLEIGH HARLEY AND her family frequently measure important life events in excessively long or remarkably brief periods of time. A lifetime is how long the showjumper, novelist and award-winning filmmaker will be afflicted with the nightmare Ehlers-danlos syndrome (EDS), a rare, multi-systemic genetic tissue disorder that makes the binding collagen in her body behave more like a Pritt Stick than other people’s Superglue.
Eighteen long years is the period it took to diagnose EDS, despite numerous and invariably fruitless trips to the GP, hospitals and surgeons, a not uncommon story among other sufferers of the condition. Seven years was the time Ashleigh spent at school. She was forced to leave aged 12 partly due to being bullied mercilessly for being different because the days she spent at school were usually exceeded by the days she was absent; too poorly to leave her bed with every day punctuated by episodic unconsciousness and paralysis in her arms and legs.
Her debilitating illness was invisible to all, but was betrayed to anyone who cared to look by her model-thin figure (digestive issues and nausea often made eating impossible) and big brown eyes accentuated by a porcelain-pale face.
Planck’s time (the smallest unit of time known to mankind) is the period it took for Ashleigh’s semi-normal life (she was born with EDS and had undergone two operations by the age of four to correct deafness) to take a catastrophically wrong turn one scorching August day when she was at the local livery yard tending to her jumping pony.
“The day it happened was the perfect day, but my whole life changed in less than a second. Suddenly I could no longer feel my arms and legs,” recalls Ashleigh. “I couldn’t see and my speech was affected. It was like I’d had a stroke.
“I was taken straight to A&E. From that moment on my whole life was different and I could no longer visit the stables alone. They found nothing wrong via blood tests and I was then on a roller coaster until I received a diagnosis years later.”
From almost limitless hours spent in the saddle, jumping her way from novice level to young rider handicaps on her 14.2hh pony Misty and 16.2hh showjumper Ellie, nowadays 15-30 minutes is generally Ashleigh’s maximum ride time. In what most would regard as a brief interlude, maybe just enough time to complete grooming tasks before a blissful hour or two of proper equitation, this is the miserly duration her illness allows before her functionality dwindles. But during those 900 seconds, Ashleigh will soar over as many coloured poles as her limited stamina permits. “Sometimes someone warms up the horse for me because my energy levels only last for a short time and I save them for the jumping,” says the girl who admits to having been born horse mad. “It takes me
“During the last two or three years I’ve got worse. EDS doesn’t go away. It’s always painful. The leg pain is by far the worst”