Actor and cancer campaigner Samuel Johnson talked to CHARMAYNE ALLISON about the personal tragedy that made him all but give up his acting career so he could focus on the legacy of his late sister in raising funds for, and awareness of, cancer prevention and treatment.
A heartbreaking and uplifting story he will share with the twin towns at the Murray Business Network dinner on Wednesday.
A DOUBLE mastectomy; radiation, chemotherapy, drugs and more drugs, pain that could be tolerated and pain indescribable.
Death comes to us all but for Connie Johnson; after all the suffering, well according to her brother Sam “her death was as perfect as it could be”.
As Samuel Johnson, actor, he can deliver a line.
As Sam, brother, he still can’t pull this one off.
Because it is a line laced with his own pain, his own loss and clearly it still hurts.
Early last year his sister Connie gave up, her besieged body could take no more and she declined to have any further treatment.
On September 7 she received the Medal of the Order of Australia for services to people with breast cancer.
The next day, after her long and courageous fight, she died at age 40 surrounded by family and loved ones.
“We got to say everything we needed to say, which was a gift,” Sam reflected.
“Before Connie went, I thought you had to die alone in this world. But now I see that’s not the case.”
And Connie’s vision, now her legacy, did not die with her.
Sam has taken on the role of chief custodian, pledging to make it to the $10 million fundraising goal he and Connie initially set when they launched Love Your Sister.
And he’ll be bringing their story to Echuca-Moama on Wednesday when he speaks at the Murray Business Network dinner at Rich River Golf Club Resort.
Today Sam Johnson refuses to be another hard luck story.
He stubbornly denies he’s ‘quote, unquote’ an inspirational keynote speaker.
He doesn't even think his story is that special compared to anyone else’s.
But it’s a story the Gold Logie-winning actor will continue to tell for as long as it sustains the beauty of his sister, her story and her determination to help others with cancer.
As long as it encourages even one woman to go home and check for lumps.
As long as it continues to save lives.
In his 40 years Sam has seen more grief than most of us could ever, would ever, imagine.
Despite a glittering career the actor-turned-philanthropist’s life has been haunted by tragic loss.
And far too many loved ones taken too soon.
Born and raised in Daylesford, Sam was just a toddler when first confronted by the shocking finality of death – his mother took her own life.
Sam and his older sisters Connie and Hilde were suddenly left to be raised by their father in what Sam said was still a loving, happy home.
At age 14 he took to the stage in his first school play – and it would prove to be right place, right time.
In the audience that night was Rhonda Schepisi – the wife of Australian director Fred Schepisi – and he caught her eye.
From there, it was onward and ever upward for the fledgling thespian.
Scoring small roles in Home and Away and Blue Heelers, he got his big break as a main character in The Secret Life of Us.
But his paramount performance was as music legend Molly Meldrum in the miniseries Molly, which earned him rave reviews and that coveted Gold Logie.
Yet even this 21-year acting career was, like his childhood, marred by tragedy.
In 2006, his girlfriend Lainie Woodlands also took her own life.
Heartbroken and traumatised, Sam took an extended sabbatical to recover, retreating to his quiet country roots in Daylesford before eventually returning to the screen.
But tragedy struck again in 2010 when Sam’s sister Connie, 33, after being misdiagnosed by three doctors, was told she had breast cancer.
The cancer had spread to her lungs, liver, spine, pelvis and knee.
She was given six to 12 months to live.
It was a crushing final blow for a courageous woman who had already battled bone cancer at 11 and uterine cancer at 22.
As Connie would later say (with a touch of beautiful, defiant humour), she had a love-hate relationship with cancer – ‘I hate cancer, but cancer loves me’.
Although he was devastated by his sister’s prognosis, Sam wasn’t about to sit idly by.
On New Year’s Day 2012, he and Connie launched Love Your Sister, a charity supporting the Garvan Institute of Medical Research – the Sydney-based biomedical research unit working out of St Vincent’s Hospital.
In 2013, Sam jumped on a unicycle and rode almost 16,000km around Australia, breaking the world record for the longest unicycle journey, raising $1.5 million for Love Your Sister and reminding millions of Australian women to be more breast aware.
In 2016, he was awarded the Medal of the Order of Australia for his service to cancer research.
But, despite tireless campaigning by the siblings, they knew nothing could stop the insidious onslaught of Connie’s cancer.
Now Sam’s mission is telling Connie’s story and ramming home the message of prevention, of early detection, of having a shot at life.
But don’t be mistaken – he said Wednesday is not going to be a sob-fest (although bring the tissues just in case).
“I’m looking forward to having a laugh as well. I refuse to be another hard luck story,” he said.
“I’ll be celebrating my extraordinary, courageous sister and talking about her legacy – and I’ll be dropping a few show business yarns.
“I offer a raw, unpolished story that people can take or leave.
“I’m not full of shitty advice and dodgy intentions. I don’t have a 10-step plan on anything. I’m just a storyteller.
“But my sister’s and my story is my favourite one to tell.”
With Sam, it’s obvious what you see is what you get.
He hates false earnestness, he loves honesty and authenticity.
And despite a life riddled with heartache, he insisted it wasn’t hard to keep going.
“How does anyone keep going?” he said.
“It’s pretty easy to get up in the morning, I’m doing something I love and I’m supported by far too many people.”
If anything, his experiences have helped him shed the weight of irrelevant worries from his life.
Focusing instead on what really matters.
“I hate fake passion and misplaced passion – they make me sick. Passion is a magic elixir, but if you’re passionate about the wrong things it can become toxic,” he said.
“I’ve had to work hard on where I place my passion. I deliberately choose not to care about 99 per cent of stuff.
“I do the five-year test for everything. Will it matter in five years? Ninety-nine per cent of the time, the answer is no.
“How many times have we had a fight with a partner or had someone cut us off in traffic and thought it was the end of the world?
“I’ve only found one thing that really matters – how well you’re loved and how well you love others. Did I love people well enough in my life? And did I show them, not just tell them?”
Sam retired from acting last year, choosing to focus on Love Your Sister instead.
A decision he hasn’t regretted once.
“It was a no-brainer, I was ready to finish whether Connie was sick or not. Quitting after Molly seemed like the right time to hang up my hat. It was like retiring after winning a Brownlow,” he said.
Sam has done more than 2000 media calls and 700 talks since Connie died.
And he admitted it was tough every time he shared.
“It’s not uncommon for me to weep or vomit before I take to the stage. I go through a hell of a lot before I get up there,” he said.
“I’m not overly comfortable speaking in public, much less airing my dirty laundry. But it’s worth every tear it takes. The benefits outweigh the downsides.”
Despite his discomfort with public speaking, he said he has zero discomfort living in the public eye.
“It’s a privilege. I’ve scolded many a person for their attitude towards the public eye. Be a sander or a tiler if you can’t handle it,” he said.
“In the past 12 months, I’ve gone to pay for petrol countless times and found out it’s already been paid for. I’ve cuddled and cried with strangers on the street. It truly is a privilege.”
So what does the future hold for Sam?
Right now, his focus is reaching the $10 million goal for Love Your Sister.
Beyond that, he said, who knows.
“My ultimate aim is to achieve a world where we don’t lose our family members to cancer,” he said.
“I hope when I speak, it causes at least one mum in the room to go home and find irregularities.
“I hope we can prevent my sister’s pain for at least one young mum in the region.”
Love Your Sister delivers 100 per cent of donations to cancer research.
For more information and to give, visit loveyoursister.org and thestick.org.au