When I was a little girl, my parents worked a lot. They were never home to look after me. My dad was a self-employed electrician, and my mum was a building surveyor. After school almost every day, my nan and pop would pick me up, drive me back to their place and I would play with my Barbie dolls until it was dark, after which my mum would pick me up. The same would happen the next day. This was my life until the age of six.
When I was six, my sister was born. By that stage, my grandparents had moved to Merimbula, on the South Coast. I didn't see them too much, but they remained a huge part of my life. Every time we would visit, my nan would spend the day before our arrival getting my sister and I presents such as new Barbies, teddy bears and lollies. She would display our gifts on our pillows so when we ran to our bedroom to put our bags down, we would find them. She did all this because she truly loved us and couldn't think of anything better than to see us smile. Life was brilliant up until two-and-a-half years ago, when my nan and pop moved up to the Sunshine Coast for the warmer weather. Everything was all that they had hoped for and more, until my nan was diagnosed with motor neurone disease (MND) in October 2019.
More specifically, my nan was diagnosed with progressive bulbar palsy, which accounts for 20 per cent of all MND cases. "Bulbar" is used to describe the area at the base of the brainstem which is formally known as the medulla oblongata. Bulbar palsy degenerates the upper and lower motor neurons in the medulla oblongata region. These neurons control the muscles in the tongue, pharynx, and larynx. Muscle atrophy, weakness and stiffness are prominent symptoms of MND, and result in significant difficulties in swallowing, speaking, as well as increased thickness of saliva, all of which can lead to the victim choking to death.
Once the bulbar MND had taken over beyond the point of home care by my pop, my nan was sent to palliative care in an ambulance, and we knew that was it. She knew that was it too, but she wasn't scared. She was suffering so cruelly that she welcomed death. She tried overdosing on sleeping medication that her doctor prescribed her, which put her in hospital. Nan shocked all the doctors, as that dosage was supposed to have killed her. All she wanted was to end her unfathomable suffering.
My nan isn't the first person to suffer in this way, to the point where death seems to be the only solution. And yet despite all this, in 2017 a nationwide poll of 1032 people only came back with a 73 per cent affirmative response when participants were asked the question: "If someone with a terminal illness who is experiencing unrelievable suffering asks to die, should a doctor be allowed to assist them to die?"
Why wasn't it at least 90 per cent?
My mum was diagnosed with amyotrophic lateral sclerosis (ALS) in November last year, which encompasses approximately 60 per cent of all MND cases. ALS is known for the degeneration of the upper and lower motor neurons simultaneously. Like bulbar, muscle wasting and weakness occur - as well as stiffness, cramps and fasciculations (muscle contractions). As the condition worsens, the muscles in other parts of the body become affected, which inhibits speech, swallowing and breathing.
I sincerely hope, for the sake of my nan and my mum, that voluntary assisted dying someday becomes legalised in the ACT. No one, no matter how ill they are, should have to go through what my nan did. Trying to kill herself in such a way, just to end the suffering and to die of her own will, is terrible - but this will keep happening until voluntary assisted dying is legalised in all states and territories Australia-wide. It remains illegal in NSW, as well as the ACT and the Northern Territory, which are blocked from debating the issue by the federal government.
The importance of the legalisation of voluntary assisted dying can only truly be understood by those suffering or their loved ones. For the fates of those terminally ill patients to be decided by those who cannot and may never understand its importance is quite simply appalling.
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