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.
What is it like as MND gradually affects your physical abilities while your mind remains sharp?
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.
If legal, would it provide an option for you?
I think I would use it as a back-up option.
My doctor said it can take a couple of days after ceasing treatment to pass; but it could be a few weeks.
I think this would be distressing for me and my family.
It would be a comfort to know that I could choose euthanasia if it was too much. I don’t know for sure.
And the process that they use to see if you qualify for euthanasia might be useful to see if I really want to cease treatment too.
How important is good care in making you want to keep going?
The main reason I am thinking of ceasing treatment is that it is such a great burden of care on my wife.
I burnt out my parents from the first three years.
Joanna has had the toughest years, and she’s burnt out many times, but she keeps on getting up each day, God bless her.
She is the real hero of this story.
Why do you keep going and how will you know when it’s time?
I would love to pass naturally.
Most people with MND pass because their breathing gets too weak, then they get a chest infection and pneumonia finishes them off.
But my breathing is relatively strong and I have not had a cold for nine years.
Joanna jokes about me being the most healthy terminally ill person on the planet.
So I don’t feel like I am holding on at all.
I am still waiting for the intuition to go using the ceasing treatment option, but I think I would live for many weeks without any food, water or BiPAP.
I’m waiting for my body to let me know when it’s ready.
You seem happy and positive – how do you do it?
I can’t take all the credit for my positivity. There are a lot of people praying for me.
This gives a felling of wellbeing and strength; as well as a host of other blessings.
I think you can find the joy in any situation if you focus on the positive.
You have a choice and I choose happiness.
It’s like standing on the deck of the Titanic after the last lifeboat has gone.
You can look down at the freezing water or up at the magnificent stars.
I could dwell on all the things I cannot do, like walk or talk or hug my wife.
But I focus on what I can do; and that is the most important stuff.
I can love and be loved, meditate, enjoy the beauty of nature.