Holly Warland is 30 years old and she has won the right to die. Voluntary assisted dying was legalized in my home state of Australia in 2021. I fought for this law so that I could end my suffering.
If you haven’t heard of the disease, it’s a genetic muscle-wasting disease that affects the body’s limbs and shoulders. My entire body is from the neck down. My muscles are damaged due to a deficiency. I use my muscles differently than anyone else and I have lost my ability to look after myself and function as a normal human being over the last thirty years. I am bedbound and need help with everything from showering to feeding myself. Also, I need help sleeping. I don’t get sore in the same position all night because my husband has to roll me from side to side every hour or two.
Some people are able to live mostly regular lives while others have different experiences. I can only assume that mine is a particularly aggressive case because of the lack of experts or research. There isn’t much in the way of treatments or therapy that can help me.
A little humor goes a long way.
My only other means of mobility are a pair of wheelchairs and my hospital bed uses an air compressor to maintain a cushion of air underneath me in order to avoid bedsores. My days are mostly a balancing act of taking care of my body and mind.
Sick with one of my kitties.
I tried not to let the diagnosis stop me from achieving my goals, but I had to stay realistic when setting them. I decided to get a doctorate when I was 25 years old. After graduating from high school, I went on to study psychology at the university and teach others. I would use an electric wheelchair to get to school. This was doable for most of my university career. I was still mobile, I could go to concerts, and I dated a little.
Concentration is needed to stay upright.
I met my husband while I was still studying. My body began to betray me after 18 months. Due to the nature of my condition, my muscles had been atrophying and had gotten to the point where my autonomy was being strained. My strength made it nearly impossible for me to do any type of work.
I had spells of vomiting, shaking, sweats, muscle contraction/spasms, episodes of breathlessness, and muscular pain at home. My husband stayed home to care for me. I came to the realization that I would have to kill myself in order to avoid a painful death.
There’s no sugar-coating disability.
Literally, EVERYTHING hurts…
My muscles are not strong enough to bring up my stomach contents.
Awakening to these dry hurls was a day to day event 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 I could find was DIGNITAS, a Swiss organization that helps dying people end their lives on their own terms, was the only one available to me. I was not up for the plane ride. There were no similar laws in my country, but support for medically assisted suicide was growing in other states. I felt powerless.
Even though everyone would love a peaceful death, no laws were in place to give me the right to one.
Living in a modern country, the right to a peaceful death was still far away. I was frustrated.
When I was younger, I could go for walks around my neighborhood.
In order to raise awareness of my situation, I started using social media to document the ugly truth about disability. I wanted to show how muscular dystrophy can affect your life. I put some graphic, uncomfortable stuff on there, but I was able to find an audience that was interested. People with disabilities are being sugarcoated. As my followers grew and my opinion was shared, I felt like I had the power to do something.
In 2018 my story was distributed in a nearby paper. The story would proceed to win a Walkley Award – kind of the Oscars for Australian reporting. This was a little, state-wide magazine, however, had an effect regardless.
This launched my career and encouraged me to get involved with politics in my state. I was a part of the Dying with Dignity campaign. I filmed a video and wrote a new story for the state parliament. My health was so bad that I couldn’t attend hearings or rallies. This is why I relied on some #BadBacktivism.
Existence is a pain for (me)eseeks!
I was able to protest from my bed thanks to the internet. I would have been useless as a political force if I had been in this situation 20 years ago and I was able to achieve change without leaving my house. Also, I thought it would be impossible for me to help change social issues that I wanted to help change. I wanted to do more than slacktivism. It wasn’t enough to like a post on Facebook. I had to take control of my death. Taking the right routes could be used to change.
I joined an established campaign group, wrote letters to my parliamentary members, and used my platform on social media to challenge old views. As I was frantically looking for a way out, my passion for this campaign was self-serving. As I began to connect with other sufferers, I was encouraged to make my own shit happen. I couldn’t depend on the world to catch up with me.
My husband and I got married in early 2021.
My story was published in a local magazine.
It’s easy to manage close shaves when you’re stuck in bed.