Holly go lightly
As muscular dystrophy takes hold of the bright and beautiful Holly Warland, she’s using her remaining strength to lobby for the right to die and to celebrate life. She tells Genevieve Gannon about her final fight.
Pinned to the dressing table opposite the bed where the irreverent Holly Warland lives her life is a piece of paper that reminds her to breathe. Her bed is the adjustable type you’d see in a hospice but otherwise we could be in the room of any young cat-loving Queensland woman. The almost-doctor and one-time aspiring dancer had the potential to achieve anything. But her childhood dreams were snatched away when a letter congratulating her for being accepted into the Australian Academy of Dance arrived around the same time as a diagnosis that would rob her of everything. That determined 11-yearold girl, whose family nickname was tripsy-wigglebottom, interpreted the “muscular” in her muscular dystrophy (MD) as meaning she simply wouldn’t be as strong as everyone else.
“I wanted to be a make-up artist and an archaeologist and all these jobs that I just couldn’t do,” she says. Then she started high school and became increasingly reliant on her wheelchair. “I thought, ‘Oh this is going quicker than I thought. Okay, what else am I interested in?’”
She set a new course and doggedly pursued a psychology doctorate, but she had to withdraw months before finishing. “I didn’t realise that MD would come with pain and sickness,” she says of the rare condition that is wasting her muscles.
Now bedridden, simple tasks are becoming harder with each passing day, and so the 28-year-old has turned her vibrant mind to advocacy. She uses the one asset the disease hasn’t stolen – her intellect – to change hearts, minds and hopefully laws. With the help of her “cameraman”, carer and love-of-her-life Luke Amos, 30, she employs humour to fight stereotypes, lobby and raise money for muscular dystrophy charities. Luke stays by her side as we chat, occasionally tending to Holly’s needs or chiming in to agree as she speaks passionately about life and death.
“Don’t call me brave for sitting here and taking medication all day. I didn’t choose this,” Holly says. “Call actual brave people brave – firefighters, or people who actually have bad lives.”
This comment arises as we’re discussing ‘inspiration porn’, the invidious practice that turns disabled people into tools to shame or motivate. It usually takes the form of a photo
of a disabled person achieving a physical feat, with a slogan like, “What’s your excuse?” Inspiration porn is part of the reason Holly began sharing an intimate diary to counter the “romanticising” of chronic illness as some sort of noble test of fortitude.
To Holly, the faux reverence is insulting. “If you say to me, ‘Holly you’re so brave,’ and I say, ‘Nah, I’m not actually,’ people don’t want to hear about it.” But she found that when she vented her frustration – which she did with humour and humanity – there were thousands of people who felt the same way.
“I wanted to show that the sugarcoated stuff is bullshit. I was getting really angry and I didn’t know how to express it,” she says. “Quite a lot of people responded saying, ‘Yes, I hate this thing too’.”
Holly wrote a blog post entitled,
I’m Documenting Myself Slowly
Dying from a Rare Disease to Show Why Euthanasia should be Legalised, and was swamped with tearful messages from others who walked the hard path of chronic illness – be it their own or a loved one’s – and had felt alone before Holly found the courage to bare all.
She created T-shirts with slogans like ‘Not your inspiration’ and ‘Thoughts and prayers won’t help me up the stairs’ that have been a hit online. Holly believes censoring the tough reality of conditions like hers warps the discussion of disability-related issues, like Voluntary Assisted Dying, so she is smashing through niceties with wit.
Holly has a lot of love for the online community she has found. A recent post signed off: “I’m very humbled that you all follow and read my posts and I hope something great happens to you today.” But a lot of her content is about chronic pain, depression and anxiety. She frequently talks about how important it is for people like her to have the right to die when their suffering outweighs the things they love in life.
“I don’t actually want to die. I would choose an average life if I could,” she said in a submission to a Dying with Dignity forum.
Luke holds a cup to Holly’s lips so she can drink as we take a break from an almost two-hour interview about body shaming, the singer Lizzo, The Simpsons and death. The room falls silent while Holly drinks. The air is thick in her Sunshine Coast room on this stiflingly hot day, and her beloved cats, Ragnor and Whiskey, are skulking around, displeased by the intrusion of The Weekly’s crew. She credits them with saving her life as she struggles against dark thoughts. On a bookshelf is a print of a grumpy looking woman reclining with her cat. When Luke stumbled across the image online, they laughed at how much it looked like Holly. Then he tracked it down and surprised her with a copy for Christmas. Holly chides him:
“We promised we weren’t going to get each other presents.”
Luke gives an exaggerated shrug, pleased to have got one over his girlfriend. He strokes her arm. For all that MD has taken from Holly, the disease couldn’t rob her of love. As a student, she had a one-track mind. Romance was a side of life Holly hardly dared to hope for. She did, however, have an online dating profile, just in case. Five years ago a young contractor, wrapping up a long stint on the German Creek Mine in central Queensland, spotted her photo and her quirky bio, and it made him smile.
“It was funny in the right places, informative in the right places,” Luke says. Like Holly’s growing audience, he was attracted to her forthright manner.
He decided to send this funny woman an email. He was driving home from the mine when a “p-ting” sounded from his phone. He knew it was a response from the pretty girl in the wheelchair, but he was only two hours into a nine-hour commute. He had trouble keeping his mind on the road, knowing the intriguing email was waiting for him. After a few shy Skype sessions, Luke and Holly went on a date. They shared a lot of the same interests and values, and loved the same pop culture and comedy. “Once we started talking, we just didn’t stop,” Luke says.
He had never known anybody with a disability, but once he got to know Holly it faded into the background.
“We just kind of got wrapped up with each other,” he says. “The third time I went to her place, she wore a T-shirt with her old cat’s face on it. As she tells it, she thought, ‘if he’s not going to be scared of me like this, he’s probably going to stick around for a while’,” he laughs. “I thought, this is someone I could see myself spending some lovely, quality time with.”
They moved in together, and as Holly’s disease continued its dark work on her body, Luke stepped up to become her full-time carer. He helps her with dressing and showering, he holds her close and rubs her back when she’s suffering, he keeps her company, shares every meal and lies beside her at night.
When Luke’s 30th birthday was approaching, Holly used her platform to crowdfund a holiday for him, with a campaign entitled ‘Give Luke A Break’.
“This man gave up a normal young life to help me live and die in happiness and deeply in love,” she wrote. “I think we need to reward people like this in such a dog-eat-dog, rat-race world.”
Using the money she raised, she arranged for Luke to spend a weekend at a hotel, where he ate steaks and drank beer with his best mate. He got a massage, played video games and then returned to his partner’s side.
“This man gave up a normal life to help me live and die in happiness and deeply in love.”
Holly’s loving gratitude for her partner has generated a lot of praise from their online community. People call Luke a saint, which he shrugs off. “It wouldn’t matter to me if people were saying I was abusive or the world’s best provider. I know what I’m doing and – more important than anyone else’s opinion – Holly knows what I’m doing. That’s enough for me. As long as Holly still wants me around and still loves me, that’s really all that matters.”
In truth they’re just two people who fell in love, and are still very much in love. She’s cool and clever and Luke is chatty, hospitable and helpful. He has an interest in photography and discusses lenses with The Weekly’s photographer, Will. Theirs is a pleasant home to visit. They’re a couple you hope will like you because they are fun to hang out with.
“For months I was convinced my Dad was paying him,” Holly says, a wry smile on her lips.
“Of course,” he quips, “that’s how we have this palatial home.” He gestures to the bedroom in the house that is funded by the National Rental Affordability Scheme.
“My main goal is to spend as much time with Holly as I can before the disease eventually wins,” Luke says. “That’s certainly what’s going to happen. I’m under no illusions about that. That’s always been my goal since the moment I realised I was in love with her.”
Online, Holly talks a lot about the extreme pain that’s the reality of life with MD, but she’s also full of appreciation for the things she treasures in life. “I won the lottery in one way, but literally lost the lottery in another way,” she says. “I feel so – and I hate to use the word blessed or any of that social media bullshit – but I genuinely feel so grateful. I have an amazing family. I have all the love I could ever have in the world. Hardly anyone has that.”
Love doesn’t cure a disease nor does it take away the pain of frustration or the sheer, boring hard graft of living with a degenerative condition. They joke for a moment about pop culture’s tendency to make books and films about love’s curative powers. They smile at each other and a shared understanding passes between them.
“How are your energy levels?”
I ask Holly after a moment. “I feel
like we have been working for a long time.”
“I’m good,” she says, from the bed where she spends approximately 23 hours a day. “Ask me anything.”
We go back to the beginning, when dreams of performing make-up artistry while on an archaeological dig were unspoiled by disease. Holly is the oldest of four children to Teel and Tony Warland who, without realising it, were both carrying a rare genetic mutation that lay dormant in their DNA. There was a one in a million chance that two people carrying the gene would meet and fall in love, but once that happened the odds of calamity narrowed significantly.
“Every time they make a baby, there’s a one in four chance of that baby having muscular dystrophy,” Holly says. “There’s none of it in either family. My parents had no idea that every kid they had they were rolling the dice.”
For the first few years of her life, there were no signs there was anything amiss.
“When I was eight or nine, I was running funny. Kids were teasing me. I’d come last in races and be breathless by 25 metres,” she says.
The walk home from school was full of pain and would leave her “absolutely knackered”. She started tripping over a lot, which is when she earned the nickname “tripsy-wigglebottom”.
“It wasn’t malicious or anything. They just thought it was who I was. I was clumsy,” Holly says.
On school sports days, she’d get her name signed off the roll and go and hide in a toilet cubicle. “I was so scared of doing anything physical because I couldn’t do it and I’d be bullied, so I’d just stay in the cubicle and read a book all day.”
Her family was on holiday when they went to see a GP who just happened to know a boy who had muscular dystrophy. She pulled Holly’s mother aside and said, “I don’t want to scare you but you should probably take Holly to be seen.”
Specialist appointments, a muscular biopsy, various tests and Holly was diagnosed with Limb-Girdle Muscular Dystrophy. Her body wasn’t producing a crucial protein that enables it to build muscle.
At this point in the story Holly stops to take a breath. “I was only 11 at the time so it didn’t mean much to me – the gravitas of the fact that this would ruin my life didn’t hit me. I thought, ‘Oh, I’ll have a normal life. I’ll just be a bit weaker’.”
“Mum and Dad had to sit me down and say, ‘Holly, this is a disease that’s going to get worse as you get older’.”
They weren’t trying to discourage her, she says, but they did want to protect her from the frustration and disappointment that would come when her body started to fail her.
When Holly finished school, her studies in psychology gave her a life-saving goal. “It was just study-study-study,” she says. All the while she thought,
“If I get [my PhD], it will somehow make everything okay.”
She was convinced that if she could get a “Dr” in front of her name by the time she was 25, it would mean something. She was just short of her goal when her deteriorating health forced her to quit. It was devastating, but now that a few years have passed, Holly is more sanguine about the whole experience.
“I enjoyed my time at uni and all the information and learning I got,” she says. Besides, it gave her a purpose. “Because what does a cripple do?” she asks. “I wasn’t climbing out my window to party.”
Go to YouTube, type in Holly Warland and you’ll see her in her wheelchair presenting her research with confidence.
It’s clear from her face that she relished the work. That YouTube search will also unearth a video she made to call for Queensland to introduce Voluntary Assisted Dying (VAD) legislation. In it, she pleas with lawmakers to allow her the chance to stop fighting when she’s ready, and to take comfort in the prospect of a good death. She is not going to get better, she tells them: “This isn’t a pity party, it’s my real life.”
Lobbying for VAD is her latest, most personal goal. “I’m already in palliative care,” she says. “Obviously I’ll get a lot worse and they’ll have to give me stronger stuff but there’s pain you can’t treat. There has to be a solution at the end for when things don’t go well. I don’t know where I’ll be in how many years, but what is living if you need a machine to breathe for you?”
She speaks about it unflinchingly, because she wants action. “Let’s get the law through first and then we can get emotional about it. Then we can have our cries and goodbyes and stuff, but let’s just get this done.” Luke, of course, supports her in this.
At first it’s hard to reconcile this campaign to die with the sardonic, articulate, pretty woman lying on the bed. But then, it begins to make perfect sense. Of course this brilliant and determined young feminist would want agency over her own body right to the very end. Her world may have shrunk to the confines of her house, but that hasn’t stopped Holly trying to shake up what lies beyond her gate. AWW