Desperate to be allowed to die
Knowing her future of unfathomable torment, Roslyn Metcalfe is desperate to be allowed to die, reports Thomas Manch.
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.
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?
Metcalfe, 52, spent her childhood in Lower Hutt, climbing the eastern hills for a beloved view of the valley. As a young woman, she lived in Auckland for three years in the 90s – ‘‘when yuppies were a thing’’, she says, waving her hands to convey a heady time. She returned to Wellington, and worked in IT.
Life remains good. She continues to wring every possible moment of joy, love and laughter from it, from her marriage and four sons, from her close friendship with hairdresser Eleanor Julius, who cracks a rude joke about reading her smutty books once it hurts to see the words.
Metcalfe throws her head back in a silent laugh.
It began at 42, when her voice began to feel rough and then disappeared seven months later. It took seven years of resting her larynx before she could mouth words.
This is how it is now: as her body wastes, any damage only ever partially recovers with rest.
‘‘I have had the most deterioration resulting from when I have been distracted, enjoying myself socialising or doing activities I enjoy. I have to be constantly cautious.’’
And this is how it will be: Metcalfe has maybe a decade of decline ahead until she can’t see, hear, move, or eat without overwhelming pain.
But her heart will remain strong – she taps her chest then motions to a raised bicep – even if all that holds together her moving parts won’t.
Metcalfe knows what her future holds 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. Noone was told beforehand, for fear of implicating them in the death.
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 – hers 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.’’
Her brother John, further down the disease’s path and already confined to a darkened room, also wants the bill to pass.
‘‘I’d like people to try and put themselves in our shoes. How would they feel facing many years of suffering as they slowly and painfully waste away?
‘‘We were perfectly healthy, until we weren’t. We had no idea we would develop this illness.’’
GINA’s VIEW ‘‘Denying people an end to their suffering is inhumane, especially when they are trapped in a lifetime of severe disability, pain and distress. Every day I get through is a day closer to freedom via death.’’