For five long years, Toa Fraser kept it to himself. At 46, the acclaimed Kiwi director has Parkinson’s – a disease normally associated with the elderly.
“I just felt like it's nobody else’s business at this point. I felt like it was my thing to hold,” he said.
It was a big secret with more questions than answers.
“How do I be big when the disease is conspiring to make me small?”
Fraser relies on a machine which administers a medicine called apomorphine 24 hours a day.
“How do I find stillness when my body is making me shake all the time? How do I feel calm when I feel so constantly unsettled? How do I lead when my body language and my face is trying to make me look meek? How do I love when I feel so ashamed?”
One of Aotearoa’s great storytellers is ready to tell his own.
“By expressing my vulnerability, maybe that opens the opportunity for other Pasifika people and people in general too, to talk about their vulnerability,” he said.
“You have to tell your story or somebody else will tell it for you.”
Sunday first met Fraser 15 years ago at Sundance, Robert Redford’s world-famous film festival in Utah, where people can literally bump into celebrities on the street.
He wrote and directed No.2, a semi-autobiographical movie based around a Fijian matriarch in Auckland’s Mount Roskill.
With him at Sundance was one of the film’s lead actors, Mia Blake.
“He's like a brother to me,” Blake said.
“We were the dynamic duo. What did we used to say? Vote No.1 for No.2.”
It worked, and No.2 won the audience award at Sundance.
“I just want to humbly say to you all, thank you very much for coming to our movie and hope you enjoy it,” he told the audience at the festival.
He was one of the festival’s youngest ever winners.
“My life went on a completely different tangent after that.”
Fraser was on his way. His next film, Dean Spanley, starred Sam Neil and the legendary Peter O’Toole.
“We talked about rugby. I remember him kicking the ball and he kinda came up to me and whispered in my ear, I've just done one thing that my doctor told me never to do,” he said.
“'Cause he’d had a hip replacement, so,” Fraser laughed.
Fraser didn’t know it at the time but his own health battle was starting to brew, with the signs of Parkinson’s sometimes appearing long before it’s diagnosed.
“Parkinson’s is a degenerative neurological condition or disease where neurons in the brain start to die,” Parkinson’s NZ CEO Andrew Bell said.
“You develop symptoms like the shakes, like rigidity, facial masking, you're struggling to swallow. Your voice gets lower.”
Fraser first noticed the signs almost a decade ago.
“I first noticed the symptoms when I was on stage with the Royal New Zealand Ballet in Wellington in 2012,” he said.
He was filming an award-winning documentary, Giselle.
“I wanted to show everybody something on my iPad and I pointed to the picture and I noticed my finger had a tremor. I hid that as quickly as I could and I guess I just put it down to stress,” he said.
He put it to one side and kept working and started working out.
He buffed up when he made The Deadlands – an action movie in te reo Māori.
Movies, TV - Fraser was working all over the world.
“After I made Six Days I transitioned into a whole bunch of really premium high-end TV shows starting with Penny Dreadful in Ireland,” Fraser said.
Staying fit helped him cope but there was a tremor he couldn’t quite shake.
“This benign essential tremor, and, you know at one point I got my liver checked and that was really good. Somebody mentioned gallstones,” he said.
On a trip home to New Zealand he went to see his GP.
“I was there to talk about a skin infection. I always remember he kinda had like ghosts in his eyes when he said, 'I don’t think we need to talk about your skin, I think we need to talk about Parkinson's'."
A neurologist confirmed the GP’s hunch that Fraser had early onset Parkinson’s disease.
Bell knows how that feels.
“I'm monitoring about 19 different symptoms, the worst one is my right hand doesn't work as well as what it used to,” Bell said.
He was 56 when he was diagnosed with Parkinson’s.
“It takes time to admit it to yourself. I mean it took me a year just to kind of like accept that 'all right, so this is the deal'. You wake up thinking, 'Surely not me, they must have made a mistake, it can’t be me'. It’s an old man’s disease, it’s not my disease,” he said.
Blake was one of the few people who Fraser told about the diagnosis.
“I was driving from the supermarket and I pulled over and he told me and I didn't know what to say.
“I went home and had a cry because his life has changed instantly.”
Fraser was determined that it wouldn’t, but the diagnosis wasn't hopeful.
“I kept it a secret when I got diagnosed. It was just my first instinct to not wanna tell people,” he said.
“The neurologist said 'You're not gonna be making movies when you're 70'. And of all the things that he said that day, that was kinda the thing that hit me the hardest.”
In the five years that Fraser kept the diagnosis secret, Blake was starting to hear from people who’d seen him and were worried.
“They didn't really specify but a couple rang and said he didn't look so good and it was really difficult because I wanted to honour his privacy,” she said.
“The side effects of the medication that I had been on for the last five years were beginning to be very obvious. I was clenching my muscles all day from the moment that I woke up, to the moment, you know, getting home.”
He continued to work overseas, directing big US TV shows like The Rookie and The Affair, working with neuro physiotherapist Gilly Davy helped to control the symptoms.
“One of the things that Parkinson’s tries to do to you if you're not careful is make you very small. And you end up shrinking, you know, you do this thing where you walk around and you sort of shuffle,” he said.
As time went on it became harder to hide the signs.
“Big sort of flailing movements, and those sort of things were, at the time, really difficult to keep down. And, you know just the effort of doing that was causing me a lot of pain.”
His career was flourishing but it was taking a toll, then came 2020 and with it Covid-19.
Netflix chose a largely Covid-free New Zealand as the location for Sweet Tooth, a post-apocalyptic drama.
Jim Mickel is the showrunner - Sweet Tooth is his creation and he’s the boss.
“Everyone I worked with and respected told me, 'Oh, you got to meet this guy, you got to see this guy's work,'” Mickel said.
He wanted Fraser to direct.
“I expected it to be a support role with Toa and I found it to be just the opposite. I felt like I came out of knowing much more about directing and what I could be doing better - it was a wonderful experience,” he said.
“It felt like a very significant, almost spiritual opportunity.”
'It feels like things take a lot of time'
The disease makes day-to-day domestic chores like cutting up fruit for his children challenging.
“Doing the dishes, preparing food, staying on top of housework, looking after my kids - for me, it feels like things take a lot of time,” he said.
“The idea of feeling judged and feeling inadequate is very difficult.”
The question of how his children are dealing with the diagnosis is challenging to answer.
“On the surface, I feel like they handle it pretty well ... I'm always asking the question of myself and them.
“The moments when I feel like I'm not giving them what other parents would be able to give them is -- I find that very challenging.
“Acceptance is hard, it’s something that I feel good at, but it’s not just something that you get on one day and you've got it forever.”
Parkinson’s is the fastest growing neurological condition in the world but nobody knows why.
“We don’t know much despite millions, probably billions of dollars being spent on research,” Bell said.
Bell is one of around 12,000 Kiwis who are living with the disease.
“It could be environmental, so pesticides are starting to get blamed a lot; it could have something to do with genetics,” Bell said.
“It could also be something like stress or work-related conditions, so it’s probably a cluster of things that causes the condition to develop.”
Fraser was back in New Zealand directing Netflix’s multimillion-dollar drama Sweet Tooth.
About a month before its release, it was time to come clean.
“It just felt I was hiding too much,” he said.
Fraser sat down and composed a tweet.
“People used to say I look cool. These days, people ask me why I look so serious. Mine is one of the many faces of young onset Parkinson’s, an (as yet) incurable brain disease. I was diagnosed five years ago. I’ve kept it quiet until today,” the tweet read.
“The response was incredible. People of clout in Hollywood that I've worked with got in touch almost immediately to say 'heard your story.'”
'I don’t want to hide anymore'
Sweet Tooth was one of Netflix’s biggest hits of the year, with the second season to be shot in New Zealand in 2022.
Mickel wouldn’t hesitate to bring Fraser on again.
“Absolutely - not just employ him but probably rely on him even more.
Fraser thinks continuing to work will help his condition.
“The particular stress that comes with that job is stress that is beneficial for my Parkinson’s, I know that my brain works better when I'm working in the job that I'm born to do,” he said.
“I really don’t want Parkinson’s to define me. I'm not gonna let fear run my life. I don’t want to hide anymore.”
It’s also no longer a secret Blake has to keep.
Blake said: “The best thing I can be is his friend and focus on Toa and giving him as much crap as possible and making him laugh and listening to him as opposed to worrying about all that.”
There is no cure for Parkinson’s disease as yet, but Fraser will continue to do the hard mahi to learn how to live with it.
“The best way to resist, to push back against the development of the disease, is exercise. Staying active, eating well - that’s really what we’ve got in the armoury,” Bell said.
It’s not how Fraser saw his life playing out but he’s still in the game.
“I definitely would tell my 20-year-old self, 'I know you're not going to listen, but it would be really great if you took better care of yourself,'” he said.
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