Written by a model from the transcript; not yet reviewed.
This concluding episode of the Promise Me series chronicles the final months and voluntary assisted dying of Nia Sims, a woman who lived for fifteen years with severe scleroderma. Her friend and choir leader Jenny Swain documents Nia's preparations, including her advocacy work to legalise voluntary assisted dying in Victoria following her father's traumatic death, and their shared music sessions with musician Rebecca Barnard. The narrative details how having the medication, Nembutal, stored at home provided Nia with profound psychological relief from her deep-seated fear of a painful death from lung failure. Ultimately, when her heart began failing, Nia chose the time of her death, passing away peacefully surrounded by her mother, sister Bella, and family.
Jenny introduces her promise to record Nia’s story before it’s too late.
Nia explains her autoimmune disease and its impact on her life and music.
Jenny and Nia mobilize to push for voluntary assisted dying legislation in Victoria.
Music, choir, and dance become lifelines for Nia and the narrator during illness.
The narrator and Nia discuss the logistics and emotional weight of the VAD drug box.
Nia’s last moments are described, including the quiet, loving support of family and friends.
Jenny reflects on recording Nia’s story and the creation of the final song.
Living with Sclerodermainsight
Nia describes her physical condition, explaining that she lives inside skin that feels like a wetsuit two sizes too small, restricting her movement and causing her skin to break down over bony areas.
Traumatic Early Diagnosisstory
Nia reflects on being diagnosed with scleroderma in her early twenties while working as a nurse, which led to severe fatigue, breathlessness, and her partner withdrawing emotionally.
Singing as Lung Therapystrategy
Nia explains that joining a choir served as the best physical therapy for her lung health while allowing her to connect with others through sound vibrations.
Fear of a Bad Deathinsight
Nia shares that a 25-year fear of dying from lung or gut failure drove her to excessive drinking and two suicide attempts out of terror of her future.
Nia details her efforts during the Victorian parliamentary debate on voluntary assisted dying, where she stayed late and live-tweeted politicians to make her presence felt as a dying person.
Managing Morning Anxietystrategy
Nia explains how she uses music every morning to combat severe anxiety and physical distress before starting her day.
Honest End-of-Life Friendshipsinsight
Musician Rebecca Barnard discusses how Nia's terminal illness stripped away small talk, creating a uniquely pure, honest, and direct friendship.
The Final Momentstory
Bella describes the peaceful moments before Nia drank the medication in under four seconds, joyfully remarking it was the last time she would walk on her legs, followed by a quick and painless death.
If a friend sent you a farewell text, saying she was planning to end her life, what would you do? Jennie’s response was to go and sing with Nia and promise to tell her story. Nia has scleroderma, her skin and lungs have hardened over the last 20 years, the pain and discomfort has now become unbearable. But thanks to the Voluntary Assisted Dying laws that Nia helped establish she will have the death she hopes for.
3,708 words · 5 speakers
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