Social IssuesMAY 10, 2022

My Journey Of Fighting For The Right To Pass Away Voluntarily

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My name is Holly Warland, I’m 30 years old, I have Limb-Girdle Muscular Dystrophy, and I have won the right to die. In 2021, my home state of Queensland (Australia) legalized Voluntary Assisted Dying – a process formerly known as euthanasia – for people suffering from terminal illnesses. I advocated and fought for this law so that I could control when and how I end my suffering.

If the name hasn’t clued you in already, Limb-Girdle Muscular Dystrophy (LGMD) is a genetic muscle-wasting disease that affects the body’s limbs and girdles (hips, shoulders). Basically, my entire body from the neck down. LGMD involves the deterioration of my muscles due to a protein deficiency. When I use my muscles, they don’t regenerate like they would for anyone else. Over the last thirty years, I have lost all ability to look after myself and function as a normal human being. I am bedbound and need help with toileting, feeding myself, showering, and preparing medication, and have essentially zero mobility. I even need help in my sleep! My husband has to roll me from side to side every hour or two so I don’t get sore in the same position all night.

Other people living with LGMD will have different experiences; some are even able to live mostly regular lives. However, due to a lack of experts or research, I can only assume that mine is a particularly aggressive case. There’s very little in the way of treatments or therapy that can help my diminishing strength.

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A little humour goes a long way (unlike me in my wheelchair)

My only means of mobility are a pair of wheelchairs – one for going outside and one for showering and toileting. My hospital bed, which I exist in for over 23 hours every day, uses an air compressor to maintain a cushion of air underneath me to help avoid bedsores. My days are mostly a balancing act of relieving my aches and pains with physical therapy (lots of stretching and massage), managing medications, and regulating my mood.

Sick with one of my kitties

I was diagnosed at 11, but I tried not to let it stop me from achieving goals, but I also had to stay realistic when setting them. Being the humble human in the world, I decided I would earn a doctorate by 25 years old. After high school, I went on to study psychology at university, later going on to teach others and study for my Ph.D. in autism neuropsychology. I would use an electric wheelchair to attend university via sometimes outright dangerous taxi rides. This proved to be doable for the majority of my university career throughout my early 20s. During this time, I was still reasonably mobile and could socialize with friends, go to concerts, and even dated around a little.

Lots of concentration needed to stay upright

I met my husband in 2015 online dating while I was still studying. We had a great 18 months together until my body began to betray me. My strength dipped – due to the nature of my condition my muscles had been atrophying and had gotten to the point where my autonomy was being strained. I could no longer attend university and my strength made my study and any type of work nearly impossible.

I found myself at home with vomiting spells, shaking, sweats, muscle contractions/spasms, episodes of breathlessness, heart palpitations, and muscular pain. My husband (then boyfriend) stayed home to care for me and became my official carer. This all led to me becoming severely depressed as I came to the realization that I would have to kill myself in order to avoid a slow, painful death.

There's no sugar-coating disability

Literally EVERYTHING hurts...

Dry heaving/vomiting because my muscles aren't strong enough to bring up stomach contents

Waking up to these dry heaves was a daily occurrence for a year

Medical cannabis changed my life

Dying With Dignity VAD rally, Brisbane QLD

I wanted to die as soon as possible and desperately began looking for options, but the only one available to me was DIGNITAS – a Swiss organization that helps terminally ill people to end life on their own terms. Unfortunately, I wasn’t up for the twenty-hour plane ride. My own country had no similar laws, but support was growing in another state for medically assisted suicide (now called Voluntary Assisted Dying). I felt helpless.

I was stuck in bed, sick every day and crying in pain thinking, “How could I escape this?” Even though everyone would love a peaceful death, no laws were in place to give me the right to one.

Despite living in a western modern country, the rights to a peaceful death were still far away. I felt frustrated.

I wish I could rewind to just a few years ago when I could go for walks around my neighborhood

In 2017 I started an Instagram and Facebook to document the ugly truth about disability in the hopes of raising awareness of my situation. I wanted to honestly depict how muscular dystrophy (and other similar disabilities) can affect your life. I put some graphic, uncomfortable stuff (my naked body, disability injuries) on there, but I managed to find an audience that was interested. People who are sick of disability being sugarcoated. As my followers started to grow, and my opinion was shared by many, I felt like I had the power behind me to do something.

In 2018 my story was published in a local newspaper. The story would go on to win a Walkley Award – sort of the Oscars for Australian journalism. This was a small, state-wide magazine, but had an impact nonetheless.

This launched my “online career” and would allow and encourage me to get involved with my state politics. I contributed to the Dying with Dignity campaign to legalize VAD in Queensland. I shot a video testimonial and wrote my story again to be heard before the state parliament. At this stage, my health was so bad that I couldn’t attend any rallies or hearings. This is why I relied on some #BadBacktivism.

Existence is pain for (me)eseeks!

The internet has made it possible for me to protest from my bed. If I was in this situation 20 years ago I would have been completely useless as a political force! I have managed to achieve change without leaving my house. I thought this was impossible, and that I was to remain forever depressed and feeling helpless regarding social issues that I wanted to help change. I wanted to go beyond slacktivism. Simply liking a Facebook post wasn’t enough for me anymore. I had to take control of my death. This could only be done by taking the right routes to change. I wrote letters to my parliamentary members, joined an established campaign group, and used my platform on Instagram to challenge antiquated (and often religious) views. Obviously, my passion for this campaign was self-serving to begin with as I was frantically looking for a way out. But it became more as I began to connect with fellow sufferers and was encouraged to make my own shit happen. I couldn’t rely on or wait for the world to catch up with me.

Nap buddies are good for helping you sleep the days away

I don’t want to be called inspirational because my original reasoning for change was selfish.

I was doing all this while taking several different medications, sick and in pain every day, while stuck in bed with a bad back!

Using an oxygen machine to help catch my breath

After years of campaigning, my state finally held a vote on a VAD bill that would allow terminally ill people to end their suffering. They voted YES to give dying people access to a pill that kills them peacefully. All authorized by medical professionals, with checks in place to ensure no one is being coerced, and no more than 12 months from the predicted time of death. Although this is a massive victory on the path to legalized VAD, my condition still would not qualify. This is a bittersweet victory. Although my muscles are deteriorating at a rapid pace, no doctor can predict when or how I will pass away. This doesn’t mean I don’t want control over my end of life.

Hot flushes, sweats, and painful muscle cramps

Obviously, I didn’t change the law by myself, but I like to think I encouraged others to join the fight – to go beyond liking a post, and actually get involved. It’s been these small steps that led to this victory, as well as an army of people with varying physical abilities and a unified need for a better death. This victory isn’t mine; it’s shared with the thousands of Australians who live with permanent pain and health issues, as my country begins to ask itself; what does the quality of death mean to them?