As someone living with terminal Motor Neurone Disease (MND) in rural Victoria, I want to share what accessing Voluntary Assisted Dying (VAD) actually looks like for someone in my position.
I have tried to pursue VAD, not because I want to die today, but because I want the reassurance that I will have a choice when my suffering becomes too much.
Unfortunately, my experience has been heartbreaking.
My current hospital is a Christian faith-based organisation, and I genuinely feel that the attitude towards me and the care I receive changed after I expressed my wishes regarding VAD. I respect everyone’s religious beliefs, but I do not believe those beliefs should interfere with my right to make decisions about my own life and death.
I have been told my life expectancy is less than 15 months, yet I cannot obtain the 12-month prognosis required to progress my VAD application.
But allied health say could be 6 months if not less. Meanwhile, this cruel disease continues to take more from me every day. My speech, swallowing, breathing, mobility and independence are deteriorating. I am now incontinent, cannot manage basic personal care independently and require assistance getting into bed.
But the barriers don’t stop with VAD.
Living in rural Victoria, I cannot even access an Occupational Therapist (OT) in a reasonable timeframe to obtain assessments for the essential equipment I desperately need.
I have been trying to obtain a suitable adjustable bed for months. Despite my progressive MND, significant spinal injuries, worsening mobility and increasing dependence on others, I am still without appropriate equipment.
I cannot get myself into bed independently. I struggle to sleep because the mattress provided is unsuitable for my physical needs. Something as basic as being able to sleep comfortably and safely beside my partner has become another exhausting battle.
How is it acceptable that someone with a terminal, rapidly progressing neurological disease cannot access the basic equipment needed to live with dignity?
Every week spent waiting is another week of lost independence. With MND, time is not something we can get back.
I watched my beautiful best friend die from MND. Before she passed, she whispered to me not to suffer as she had if I ever found myself in the same position.
I made a promise to myself and my family that I wanted to preserve as much of my dignity and independence as possible. I wanted my family to remember the person I was before this disease took everything.
I am not asking anyone to end my life today. I am asking for the opportunity to make an informed choice about my future while I can still communicate my wishes.
Instead, I feel as though I am being forced to wait until I deteriorate further, potentially losing the very abilities I need to navigate the VAD process.
And living in rural Victoria makes everything so much harder. Finding specialists, obtaining assessments, accessing allied health services and travelling while seriously unwell are enormous challenges.
We celebrate having VAD legislation in Victoria, but what good is a legal right if a terminally ill person cannot realistically access it?
Where is my dignity? Where is my peace of mind? Where is my autonomy?
I am mentally capable of making my own decisions. I understand my diagnosis, my prognosis and what lies ahead. Yet I feel that my wishes are being disregarded.
I have spent my life advocating for others. I never imagined I would spend what precious time I have left fighting so desperately to have my own voice heard.
Dying with dignity should not depend on your postcode, your hospital’s religious beliefs or your ability to fight a complicated medical system while your body is failing you.
And neither should living with dignity.
I should not have to beg for an OT assessment, suitable equipment, appropriate medical care or the opportunity to have my end-of-life wishes considered.
I support the work of Dying With Dignity Victoria, but I also want people to understand that having legislation and being able to access it are two very different things.
I have a terminal illness. I have made my wishes clear. I am asking for compassion, respect, appropriate care and the opportunity to be assessed fairly.
I am not asking for special treatment. I am asking for the dignity that every Australian deserves, regardless of where they live.
Please remember that behind every VAD discussion is a real person, a family and a life being affected by these barriers.
Surely we can do better than this. ❤️
My life. My dignity. My wishes. My voice. They should all matter.
