Roslyn Metcalfe keeps a constant tally of her diminishing life.
It hurts to spend more than a few seconds on her feet, so she manoeuvres on her knees. The purring kitchen fan sounds a piercing screech, so she wears earmuffs. Bright daylight sears the eyes, so dark sunglasses are needed.
Her precarious balancing act between an enjoyed life and degenerative pain is not the worst, however. What Metcalfe fears most is that she will continue to live longer than her tolerance for suffering permits.
Why would we keep a law that requires her to suffer?
Diagnosed with a rare connective tissue disorder that has taken her voice, but promises to take much more, she has made a desperate plea to politicians: let me die.
But will the End of Life Choice Bill, currently being considered by Parliament, pass into law and allow it? Or will she die as her sister did, at her own hands in an act of desperation?
For some poor people the choice is between suicide and assisted suicide.
Metcalfe has maybe a decade of decline ahead until she can’t see, hear, move, or eat without overwhelming pain.
And this won’t be something that palliative care can help with.
Metcalfe knows her future because she’s seen it in her sister, Gina, who was diagnosed in her 30s with the same rare, little-understood genetic condition.
“When Gina first showed symptoms, we had no idea what it was. Doctors said it was nothing to worry about. Then, treatment was to gently push through the pain and carry on. Which Gina did, but she deteriorated rapidly.
“Gina told me she won’t have a choice when she dies; pain will decide when she can’t bear another moment.”
For almost a decade, Gina was bedridden and wore an eye mask taped to her face to prevent the slightest light causing the sharpest pain. Tinnitus was a constant siren in her ears; she wore earplugs always to dampen all noise. She could swallow only thin liquids, and the pain of pressure caused by her protruding bones couldn’t be alleviated, even by morphine.
Yet there was no end to dream of. Doctors couldn’t help, and palliative care offered Gina hand massages, which were enjoyable but did little to erase the pain.
In a way, Gina has served as a scout for her sister, cutting a rough path through a wilderness of pain and deterioration that now helps preserve her from what Gina described as a “tortured existence”.
It’s the final part of her sister’s journey that Metcalfe so desperately doesn’t want to follow. Gina took her life earlier this year. No-one was told beforehand, for fear of implicating them in the death.
You can only imagine how terrible her suffering was.
This is where the End of Life Choice Bill would allow Metcalfe, facing decades of torment, to seek death.
Of illnesses likely to meet the “grievous and irremediable medical condition” threshold – Huntington’s, multiple sclerosis, motor neuron disease – her condition is seen by some as a pure example of where that choice over death would be valuable.
“If the bill passes … I can live my life without the stress of planning my own demise.
“Without the option … my choice will be to either endure extreme suffering for many decades until old age, or to end my life alone and in secret.”
How can we deny her a better choice?