Michael Lee was diagnosed with motor neurone disease (MND) 10 years ago, when he was 35 years old.
Three years later he met his wife, Joanna, and they married in 2012.
Joanna is his primary carer, helped by a team of care workers.
She is determined that her husband will not choose to end his life because he thinks he has become too much of a burden.
Over the years the disease has taken its toll, causing Michael’s muscles to weaken and atrophy.
He lost the use of his hands, then his legs.
Now he cannot speak or swallow and needs pressurised air 19 hours a day to help him breathe.
During the recent Voluntary Assisted Dying debates in NSW and Victoria, Michael and Joanna contacted 7.30.
They wanted to tell their story, and explain that even with a terminal illness, with good support and care, life can be worth living.
Michael can still move his eyes and communicates through a computer, with a sensor using infrared light to pick up tiny movements.
Using this method it took Michael about an hour to answer each of 7.30’s questions.
You watch your body as a spectator and then gradually disassociate yourself from it.
I used to be a chiropractor, which literally means, use your hands. But now I don’t recognise my hands as being mine.
Curiously, I always dream of myself as whole and able!
There is a little-known cognitive symptom of MND called emotional lability; it is the loss of regulation of emotions.
So I will cry excessively during sad movies and laugh out loud if something is funny.
What message would you like to give about living with a terminal illness?
You can have quality of life with a terminal illness.
When I was diagnosed with motor neurone disease they gave me a standard prognosis, three to five years until you die. That was 10 years ago.
Since then I met and married my wife, got a new job, moved house twice and bought a car!
You can still love and laugh.
I will tell you my favourite joke:
Why did the raisin take a prune to the movies?
Because he couldn’t find a date.
What is your view of assisted dying, or voluntary euthanasia, should it be legal in Australia? Why?
Firstly, I would like to speak about the legal way of voluntary dying in Australia.
It’s called ceasing treatment. When you remove the machines that are artificially sustaining life and let nature take its course.
For me it would mean stopping using my PEG (percutaneous endoscopic gastrostomy) tube to give me food and water, and stopping my BiPAP (bilevel positive airway pressure) ventilator that I use 19 hours a day. For a person with kidney failure it would mean stopping dialysis.
This is the way I would prefer to go. The natural way.
And I think that given the right palliative care, that it would be a peaceful way to go. I think many people would choose it over euthanasia.
I’m still not sure about euthanasia, I think it’s really God’s decision when we leave the body, but I have not suffered much.
I don’t know what it’s like to be in excruciating pain, for example.
For those people who have already tried everything else, including good palliative care, maybe it should be legal.