My Journey Of Fighting For The Right To Pass Away Voluntarily
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?
A moment’s rest in my shower chair. Haven’t had a shower by myself in years
My husband and I got married in early 2021 while trying our hardest not to catch COVID
Smooch!
Not enough sassy t-shirts in the world – so I started making my own!
My story published in a local magazine
#SlothLife
Close shaves are the easiest to manage when you spend all day stuck in bed
I like to play with wigs
The fluffiest cuddle buddy
My wedding day!
So lucky to have found the love of my life
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Anyone who does not approve of assisted death has never been close to someone forced to die a slow painful death. Wishing you the best and hope you find comfort when it becomes available!
I am a Hospice nurse in the USA. Those states that have DWD laws, have a long tedious process that pts often don't have time to complete. Very unfair. This process should be faster. So sick of a nation that doesn't let adults make their own decisions. Religion destroys rights.
In the Apology, Socrates says that death can't be avoided, only delayed. Death is not a tragedy, living your life in an unvirtuous manner is. I think society is coming around to realizing that death is not something that needs to be avoided at all costs - even if it means horrendous suffering - but societal change is very slow. Thanks for doing your part, and I hope your laws come to encompass your condition when you are ready to make that decision.
Sometimes she looks like Lady Mary in Downton Abbey. So beautiful. This story is so heartbreaking, like Caro Caro said in the comments before me. I wish her the best too
Religon sticks its nose in health care far too often. No doubt there are other reasons people oppose but allegiance to the folk tales of stone age goatherders is top of the list.
I'm sorry that you're still suffering, but you have alleviated the suffering of many others with your action, and your sense of humor is fantastic
I remember when my mother was dying of cancer. She was in so much pain and eventually the meds didn't cut it anymore. One of her sisters came to visit her a few weeks before she died and said, "This is barbaric. We give our pets more dignified deaths." I know if assisted death had been an option my mother would have taken it, and the family would have supported her.
Having had to sign paperwork to take my mom off life support even though her living will asked for no mechanical assistance. then spending 14.5 hours watching her struggling to breathe while being in pain is something every person who disagrees with passing DwD laws should have to watch every hour of.
You are absolutely amazing, and I support your choice. My dad was diagnosed with idiopathic pulmonary fibrosis, an incurable disease in which the lungs gradually scarify, preventing you from breathing. He died 3 years after diagnosis, and 2 of those years were abject suffering. Had he been able to choose a dignified death, I would have supported him too. I've been disabled with multiple chronic pain disorders for the past 23 years. Most are not degenerative, and I can still manage to care for myself, thankfully. If it gets to the point that I can't because of degeneration, I would hope to have the option to choose a dignified death rather than suffer needlessly for years. Wishing you happiness and peace.
well done for the activism and writing about this.... VAD is a given in a rational, compassionate society.... but not ours unfortunately.
You are beautiful, and I hope you find peace when you are finally finished. Wherever you will go, I hope you will be happy
This is something that should be accepted universally...I know that if I ever became terminally ill and couldn't take care of myself at all I wouldn't want to be a burden. Or to even suffer the pain and sometimes the humility that goes with having to be cared for 24/7. As long as the person has a legitimate diagnosis, is in the right state of mind and not being coerced it should be legal
A close friend of mine was one of the first people in California to use our state's compassionate death statute. Her final words were, "Isn't it funny how everybody gets their perfect dog?"
As Holly is experiencing this, there are people around the world, rushing around trying not to be late, being stressed out at people for not being 'woke', others are quite literally sitting in traffic jams, cursing, blasting their horns because they just want to get somewhere. It puts it into perspective how much we think is necessary to our lives all this rushing around, when the reality is so much different. Her body maybe weakend, but she is so much stronger than she realises.
Thank you for sharing your story. People need to realize life isn't a fairy tale where everybody lives happily forever. No, people get sick in the most brutal ways, suffer and die. When that happens, we should have the power to decide our fate.
After being present during a medically assisted (overdose of morphine) death of a dear friend with AIDS in the early 80s, and having another dear friend choose to die of an overdose (without medical assist), I became clear that we can all have control over the time of our death.
You are an Amazing person. My wish is that your wish comes true for you. So happy to have met you in this format. A happy Journey. xo babystella...91af02.jpg 
Life is not fair, but death should at least be given a chance to be. Making a really impactful change, thank you.
Reading this made me realize...I have no problems today. I take my health for granted far too much, and I'm grateful and privileged to have it. Also, I'd be proud to have half the courage of this woman.
Love the pics with the kitty - and the distrophy wife t-shirt made me snort tea through my nose :D The right to end your life should be a basic human right - nobody should be forced to live in agony. I'm glad you got the law changed, it will help prevent terminal suffering for thousands.
Each person's body belongs to THEM, and no one else. If she can't decide - on her own, for her own reasons - what to do with it, then WHO DOES IT BELONG TO? If nobody else has ownership, then nobody else has any say in what she does/doesn't do with it. If "society" just *has* to get involved by making sure she's sane (she shows that a desire to self-terminate CAN be sane) and not being coerced/forced/enticed is the limit. Officialdom can _approve_, but may not *prevent*.
You are an incredibly brave, powerful, and special woman to advocate for yourself like you are. You deserve the life and death you want. My heart goes to you and your husband
God, being stuck in my body. A prisoner, it almost seems like, would hurt my soul. I don’t know if your still alive, or reading this, but I’m sorry. I don’t know if your illness gets better or not, I have never heard of it. But I’m sorry life is not fair. The kindest hearts are those that are taken first.
As someone with chronic illness long term, this post really touched me... my country is still a long way off, but I'm so glad other Countries are slowly realizing that this is the most dignified death that many would choose if possible
Thank you for sharing your journey! You truly are a beautiful person in heart and soul. Prayers going up for you to soon have blessed peaceful relief.
You are such an awesome advocate for VAD. Thanks for raising your voice even though it's exhausting. I hope your pain is better today than yesterday. Regards to nap-cat and your husband 🐾🕺 Wishing you the best sunset, Holly
2 questions. 1) what is the clavicle tattoo? 2)name of fancy lilac lipstick??
The musculardysTROPHY wife is awesomely brilliant. Sometimes the best ideas come from the worst of situations. If that is an example of your mind, the world will suffer a great loss when you're gone. You're both beautiful and brilliant and my utmost respect to your husband. I'm sure the final chapter will be quite bittersweet.
Anyone who does not approve of assisted death has never been close to someone forced to die a slow painful death. Wishing you the best and hope you find comfort when it becomes available!
I am a Hospice nurse in the USA. Those states that have DWD laws, have a long tedious process that pts often don't have time to complete. Very unfair. This process should be faster. So sick of a nation that doesn't let adults make their own decisions. Religion destroys rights.
In the Apology, Socrates says that death can't be avoided, only delayed. Death is not a tragedy, living your life in an unvirtuous manner is. I think society is coming around to realizing that death is not something that needs to be avoided at all costs - even if it means horrendous suffering - but societal change is very slow. Thanks for doing your part, and I hope your laws come to encompass your condition when you are ready to make that decision.
Sometimes she looks like Lady Mary in Downton Abbey. So beautiful. This story is so heartbreaking, like Caro Caro said in the comments before me. I wish her the best too
Religon sticks its nose in health care far too often. No doubt there are other reasons people oppose but allegiance to the folk tales of stone age goatherders is top of the list.
I'm sorry that you're still suffering, but you have alleviated the suffering of many others with your action, and your sense of humor is fantastic
I remember when my mother was dying of cancer. She was in so much pain and eventually the meds didn't cut it anymore. One of her sisters came to visit her a few weeks before she died and said, "This is barbaric. We give our pets more dignified deaths." I know if assisted death had been an option my mother would have taken it, and the family would have supported her.
Having had to sign paperwork to take my mom off life support even though her living will asked for no mechanical assistance. then spending 14.5 hours watching her struggling to breathe while being in pain is something every person who disagrees with passing DwD laws should have to watch every hour of.
You are absolutely amazing, and I support your choice. My dad was diagnosed with idiopathic pulmonary fibrosis, an incurable disease in which the lungs gradually scarify, preventing you from breathing. He died 3 years after diagnosis, and 2 of those years were abject suffering. Had he been able to choose a dignified death, I would have supported him too. I've been disabled with multiple chronic pain disorders for the past 23 years. Most are not degenerative, and I can still manage to care for myself, thankfully. If it gets to the point that I can't because of degeneration, I would hope to have the option to choose a dignified death rather than suffer needlessly for years. Wishing you happiness and peace.
well done for the activism and writing about this.... VAD is a given in a rational, compassionate society.... but not ours unfortunately.
You are beautiful, and I hope you find peace when you are finally finished. Wherever you will go, I hope you will be happy
This is something that should be accepted universally...I know that if I ever became terminally ill and couldn't take care of myself at all I wouldn't want to be a burden. Or to even suffer the pain and sometimes the humility that goes with having to be cared for 24/7. As long as the person has a legitimate diagnosis, is in the right state of mind and not being coerced it should be legal
A close friend of mine was one of the first people in California to use our state's compassionate death statute. Her final words were, "Isn't it funny how everybody gets their perfect dog?"
As Holly is experiencing this, there are people around the world, rushing around trying not to be late, being stressed out at people for not being 'woke', others are quite literally sitting in traffic jams, cursing, blasting their horns because they just want to get somewhere. It puts it into perspective how much we think is necessary to our lives all this rushing around, when the reality is so much different. Her body maybe weakend, but she is so much stronger than she realises.
Thank you for sharing your story. People need to realize life isn't a fairy tale where everybody lives happily forever. No, people get sick in the most brutal ways, suffer and die. When that happens, we should have the power to decide our fate.
After being present during a medically assisted (overdose of morphine) death of a dear friend with AIDS in the early 80s, and having another dear friend choose to die of an overdose (without medical assist), I became clear that we can all have control over the time of our death.
You are an Amazing person. My wish is that your wish comes true for you. So happy to have met you in this format. A happy Journey. xo babystella...91af02.jpg
Life is not fair, but death should at least be given a chance to be. Making a really impactful change, thank you.
Reading this made me realize...I have no problems today. I take my health for granted far too much, and I'm grateful and privileged to have it. Also, I'd be proud to have half the courage of this woman.
Love the pics with the kitty - and the distrophy wife t-shirt made me snort tea through my nose :D The right to end your life should be a basic human right - nobody should be forced to live in agony. I'm glad you got the law changed, it will help prevent terminal suffering for thousands.
Each person's body belongs to THEM, and no one else. If she can't decide - on her own, for her own reasons - what to do with it, then WHO DOES IT BELONG TO? If nobody else has ownership, then nobody else has any say in what she does/doesn't do with it. If "society" just *has* to get involved by making sure she's sane (she shows that a desire to self-terminate CAN be sane) and not being coerced/forced/enticed is the limit. Officialdom can _approve_, but may not *prevent*.
You are an incredibly brave, powerful, and special woman to advocate for yourself like you are. You deserve the life and death you want. My heart goes to you and your husband
God, being stuck in my body. A prisoner, it almost seems like, would hurt my soul. I don’t know if your still alive, or reading this, but I’m sorry. I don’t know if your illness gets better or not, I have never heard of it. But I’m sorry life is not fair. The kindest hearts are those that are taken first.
As someone with chronic illness long term, this post really touched me... my country is still a long way off, but I'm so glad other Countries are slowly realizing that this is the most dignified death that many would choose if possible
Thank you for sharing your journey! You truly are a beautiful person in heart and soul. Prayers going up for you to soon have blessed peaceful relief.
You are such an awesome advocate for VAD. Thanks for raising your voice even though it's exhausting. I hope your pain is better today than yesterday. Regards to nap-cat and your husband 🐾🕺 Wishing you the best sunset, Holly
2 questions. 1) what is the clavicle tattoo? 2)name of fancy lilac lipstick??
The musculardysTROPHY wife is awesomely brilliant. Sometimes the best ideas come from the worst of situations. If that is an example of your mind, the world will suffer a great loss when you're gone. You're both beautiful and brilliant and my utmost respect to your husband. I'm sure the final chapter will be quite bittersweet.
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