Liz Jackson was in her early 60s when she began to notice puzzling changes in herself. The Australian TV and radio reporter had been tirelessly reporting from the frontlines of conflict zones and politics for more than 20 years when she began to experience debilitating bouts of fatigue and stress, that were initially diagnosed as depression. With a focus on becoming well again, Jackson retired in 2013. But she found even in her life of reduced stress, her symptoms became worse. Eventually, 18 months later, a new diagnosis was offered — Parkinson’s disease.
“I knew virtually nothing about it,” Jackson, 66, writes in an essay for Medium. “To me, Parkinson’s meant a bad tremor, an awkward gait and difficulty with handling small change. I’ve since learned it’s a complicated disease of the brain that can have different effects on different people. For me, it’s meant pain and panic attacks.”
Together with her husband, filmmaker Martin Butler, and his colleague Bentley Dean, Jackson made the decision to create a documentary about her experience, called Sense of Self. (Watch via this link, or the one below.)
Ever the unflinching journalist, Jackson allowed herself to be filmed even as she was consumed by harrowing anxiety. “The first time I saw the rushes of my panic attack in the doctor’s surgery I was appalled,” Jackson reveals. “I had no idea I looked so bad and so mad, like a half-crazed, underfed animal in the presence of a malignant predator, with a long lonely drool of saliva falling from my lips into my lap.”
“You’re not the person you were before and you feel more vulnerable,” says Jackson. “And more open to people’s judgement. And pity. I don’t want pity and I don’t want judgement.”
With raw honesty, Jackson discloses how her toddler granddaughter initially became frightened of her; as well as her own fears of developing dementia and her occasional feelings Butler would give up on her as she pushed her “mad[ness], paranoia, weakness too far.” On reflection, she calls those suspicions of abandonment “completely crazy.”
Jackson’s grown children Rose and Joe also appear in the film, filling out the picture of how the neurological condition can impact family members. “I mean, the hardest things for me is being damaged in front of my children and not being the mother that they grew up with,” says Jackson. “I was becoming much more isolated and depressed and I didn’t want them to know any of it.
“I guess I’d hoped that somehow — I don’t know what I thought — that I could get better without them ever knowing.”
As well as an insight into a disease for which there is currently no cure, only palliation, the ultimately uplifting Sense of Self has been hailed as a powerful love story about the decades-long relationship between Jackson and Butler, who met in Oxford, England, in 1974. “That’s been my view from the very beginning, that Liz is the person I wanted to spend my life with, and I have done and it’s been truly fabulous,” says Butler. “I’m looking forward to years of continuing to enjoy this unique and fabulous personality. And that’s a fabulous life.”
“Phew,” says a tearful, funny Jackson, before the two embrace.
The film aired on national television in Australia on Monday night, and was immediately lauded by viewers for its courage.
You can watch the entire documentary below, starting from the 6:50 mark: