Publications
Partners
Her Instagram feed was filled with pictures of disabled social media personalities who shared vibrant images of how great life was despite their physical impairment.
“It seemed like every social media personality with a disability fell into the category of ‘inspirational’,” Holly Warland writes in a piece for Bored Panda.
“Worse still, the fitness blogs posting inspo-porn memes of amputees with captions like ‘GET AFTER IT!’ and ‘WHAT’S YOUR EXCUSE?’ Gross.”
And so the 27-year-old PhD candidate decided to document the reality of her struggle with limb girdle muscular dystrophy (LGMD)?.
“My partner and I have been documenting daily life with a disability through Instagram without the filters and mushy inspo-porn,” Holly, from Queensland, Australia, writes on the site.
“I’m brutally honest and open with my photos, revealing aspects of disabled life that you don’t often hear about.”
But there’s more to Holly’s poignant posts than simply documenting her disease. She’s “documenting her death” in a bid to legalise euthanasia in Australia, Metro.co.uk reports.
“There are so many laws and ways to control life, but so little to control how and when we die,” she says.
“We shouldn’t treat disabled people as though they all have a death wish, but we should at least let them have that choice.”
Holly had a normal and happy childhood before her diagnosis, making memories with her siblings Adam (25), Ben (23) and Mia (18).
But she always struggled to keep up with other kids in her physical education class. She’d be so exhausted after a school day that often she’d crash out when she got home, unable to move.
Despite her achieving straight As, Holly’s parents at first thought she was lazy for hiding in the school bathroom, pretending to be sick, when she should’ve been out on the sport field – until a cold forced her to see a doctor.
“I thought I’d just be prescribed antibiotics but the doctor saw there was something else wrong with me.
“She noticed how slowly I moved, referred me to a specialist and within a year of monitoring and testing, I was diagnosed with LGMD.”
The news devastated her dad Tony (49) and mom Teel (58).
Even though Holly knew her condition would increasingly worsen, she continued living her life in as normal a way as she could.
At the age of 17 she started studying psychology at Queensland’s University of the Sunshine Coast, with the aim to get her doctorate in neuroscience by the age of 25.
But by 2016 she had to pull out of her PhD studies due to her condition, Independent reports.
“Every day I began waking up to waves of nausea, a racing pulse, sore muscles, hyperventilation and uncontrollable shaking.
“I became depressed and suicidal but, ironically, I was so weak I couldn’t physically have killed myself even if I’d tried. I needed someone to unwrap a chocolate bar for me most of the time.”
It was during this difficult time that she realised she wanted to be able to take her own life one day.
“As an atheist, I know once it’s done I’ll be extremely relieved to know there’s nothing afterwards.
“I’m not scared, death is only hard for the people you leave behind.”
Her boyfriend, part-time photographer and videographer Luke Amos (29), is now her full-time carer.
The two met on an online dating site and even though things do get hard, the couple “have never had a single fight”.
Holly doesn’t know what the future holds but for now she’s dedicating her time to sharing her journey with her 23 000 Instagram followers.
“I use my Instagram to show the truth of what it’s like, living with a condition like this. It’s a means for me to vent online and document my disease as it changes.”
SOURCES: METRO.CO.UK, BOREDPANDA.COM, INDY100.COM
