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https://www.theguardian.com/artanddesign/article/2024/aug/20/emily-lahey-time-to-live-project-terminal-cancer>
"It’s sunny on Saturday morning when I enter Carriageworks in the Sydney suburb
of Eveleigh, and the farmers’ market is in full throttle outside. But I bypass
the stalls and crowds: I’m here to spend some time with a young woman named
Emily Lahey. Three minutes, to be precise.
Entering the darkness of one of the venue’s concrete performance bays, I sit on
a spotlit bench and watch a brief video narrated by Emily. Then she joins me,
and we sit side by side as a massive digital clock projected on to the wall in
front of us counts down from 3:00 to 0:00. When my time is up, I must leave.
Over the course of the day, about 30 people sat with Emily. Some used their
three minutes for quiet reflection. Others wanted conversation, asking her
questions or sharing why they had come to see her. Usually you’d describe a
project like this as performance art, but Emily isn’t an artist: she’s a
terminally ill 32-year-old who doesn’t know how much time she has left. Her
performance is part of a project titled
Time to Live, designed by the
Australian Cancer Research Foundation (ACRF) to raise awareness and funds. Each
participant has effectively “bought” a slice of Emily’s time. Some were
complete strangers, others were family and friends; either way, the experience
provoked strong emotions. In the foyer afterwards, I meet another participant,
Helen, who is visibly moved. It has raised a lot for both of us: we speak about
the grief of losing our mums to cancer, the anxiety of living with a genetic
predisposition.
Meeting Emily for the first time, you wouldn’t know she was sick, let alone
that she had undergone successive rounds of chemo, radiotherapy and
immunotherapy. “People don’t believe it when I tell them that I have terminal
cancer,” she says when we talk over Zoom a few days before her performance.
In 2019, when she was just 27, doctors discovered a tumour the size of a
cricket ball in her sinus and skull bone. Just a few months earlier she’d felt
healthy and fit, and was running 5-10km a day, as a member of the Australian
defence force. When she developed headaches and symptoms consistent with
sinusitis, doctors initially dismissed it as such, and it was only when she
began to lose vision in her left eye that scans revealed the tumour.
Chemotherapy proved unsuccessful; the cancer had metastasised. Genomic testing
revealed it was NUT carcinoma, a rare and aggressive mutation with few
treatment options and a typical prognosis of six to nine months.
That Emily is still alive four years later is in large part due to a cutting
edge treatment that is not yet available in Australia, that she was able to
access from the US as part of a “compassionate” government scheme – but only
once her condition had deteriorated sufficiently, and the more common
treatments had proven ineffective. “[At the time] knowing that there was a
proven treatment option with demonstrated efficacy overseas was really
frustrating. I was like, ‘Why can’t I access it now?’” Emily says.
This aspect of Emily’s experience embodies the raison d’etre of ACRF, “to fund
world-class research into the prevention, diagnosis and treatment of [cancer]”.
Founded in 1984, the charity has distributed more than $184m to research
institutions across Australia – and ahead of its 40th anniversary, it engaged
David Gibson and Nathan Lennon, former creative directors at New York ad agency
Droga5 (and best known in Sydney as co-founders of Hawke’s Brewing in
Marrickville) to devise a campaign calling attention to the life-changing
potential of its work."
Cheers,
*** Xanni ***
--
mailto:xanni@xanadu.net Andrew Pam
http://xanadu.com.au/ Chief Scientist, Xanadu
https://glasswings.com.au/ Partner, Glass Wings
https://sericyb.com.au/ Manager, Serious Cybernetics
