Rachel Rypma celebrated her 40th birthday last August, but is adamant she does not want a 41st.
At 24, the Christchurch woman discovered she had the neurodegenerative genetic disorder Huntington’s Disease.
At the time, she lived in Sydney with her partner, Gabe Rypma, pregnant and full of hope.
Today, she lives alone in a care home in Christchurch and wants to die.
She wants people to know what it is like for her, and hear her plea.
As Rypma makes her way to a small living room she clutches her walking frame and struggles to keep her body on task.
Some people argue the alternative to euthanasia is palliative care. But not everyone is dying of terminal cancer.
Huntington’s destroys the brain and the body. It is sadly a sentence of hell on earth where you could spend many years physically unable to even feed yourself, and also with no mental ability.
Under the current law the only way to avoid this is to commit suicide with no help. But this means killing yourself possibly years before you have to, rather than the alternative of being able to have assistance to do so once your disease gets to a certain point.
Her limbs, torso and head are in constant motion, wildly flailing in different directions.
The disease has taken control of Rypma’s body and speech, but her mind has so far stayed intact.
Eventually, she will probably slide into dementia.
With her mother, Denise Forbes, by her side, Rypma concentrates to string the words together.
“I’m not happy, and I want to die.”
And for the sake of humanity she should be allowed to.
Most of her food has to be pureed and fed to her by carers, but eating is still hazardous. She often chokes or vomits at meal times.
Tall and willowy, Rypma recently opted to shave her light brown hair. A large gold and orange medallion hangs around her neck. Throughout the interview she pauses to smile for the camera.
It is a reminder of her former vitality.
After the diagnosis, Rypma and her then partner, Gabe, made the painful decision to terminate the pregnancy.
Gabe Rypma said his former wife was an advocate for euthanasia from the time she was diagnosed.
“She said, ‘let’s go and have an amazing life’, but when the dignity is gone and I can’t walk, then I want the choice to end my life.”
Yet our law denies her such a choice.
In 2007 Rypma returned to Christchurch on her own.
She had reached a low point and suffered from depression, Forbes said.
After moving in to the care home three years ago she tried to run away and tried to take her life twice, Forbes said.
She supported her daughter’s position on euthanasia.
“I believe someone in Rachel’s situation should have the right to choose.”
Forbes knew of another woman with Huntington’s Disease who starved herself to death, an agonising process that took nine weeks.
Rypma had a “living will” that specified she would not take medication if she was to fall ill. Forbes said it was likely she would succumb to an infection this winter.
The disease was progressing rapidly. She had lost 14 kilograms over the past six months because of her constant movement.
Huntington’s Disease nurse Jeanette Wiggins said 80 per cent of patients died when they accidentally inhaled food or drink and it lead to pneumonia.
So our compassionate society means we have to leave them to choke to death or hope they get pneumonia.