“Missing Out”

Hi, my name is Ron. I will not qualify for a Voluntary Assisted Death under the Victorian legislation. This is a huge shortfall in the legislation.  I have a disease called Inclusion Body Myositis or IBM. It is a muscle-wasting disease that is slow in progression but never-the-less it never stops marching and devouring muscle like Pacman.

I have had it for close to 30 years but was only diagnosed in 2013. It is not a terminal disease but if I see it to the bitter end, I will not be able to communicate move in any way nor even open and close my own eyes.

Otherwise, I am an extremely healthy almost 69-year-old. My father is a healthy 95-year-old, so I could live that long, as longevity is on all sides of my family. Here lies my dilemma. I have worked and played most of my life outdoors and have been a very capable person in my endeavours. I could well be laid up for a couple of decades in a nursing home or who knows where. I spend about 15 hours a day in a power wheelchair chair and have limited use of my hands and my right arm.

Four years ago, I could walk 100 metres, stand for 30 minutes, make minor meals, and drive my van which I stopped doing back then. Now I could end up as vegetable soup for many years and won’t qualify for VAD. Therefore, suicide is my only option, and I must be able to do this otherwise I am stuck and will most likely have to die before I am ready or have the choice of when.

When I hear someone has cancer, I think “you lucky person, you have an end to prepare for”. At the moment I am happy enough with my life and my hobby of model trains. As I said to the Victorian VAD parliamentary committee, to which I provided my story, I shouldn’t have to be contemplating my demise on a daily basis. This disease is a thief. It robs you of everything including your dignity so people in my situation are the square pegs and the VAD process is a round hole or as I say we come under the “who cares about them” rule.

This is just a small window but a very real one for many thousands of Victorians/Australians.