On Friday afternoon, via a status published on the Love Your Sister Facebook page, we learned that Connie Johnson had died.
Connie Johnson was good at proving doctors wrong.
At the age of 11 a tumour in her leg should have felled her; it didn’t. At the age of 22, she developed a tumour in her uterus, but still she went on to give birth to two healthy boys. At the age of 33, on her eldest’s fourth birthday, she was told to get her affairs in order. It was breast cancer this time; she had just months to live, a year at best.
Yet seven years passed since that day. And in that time Connie, with the help of her actor brother Samuel Johnson, became one of Australia’s most recognised, respected voices in the push for breast cancer awareness. Through her Love Your Sister charity, or ‘village’ as it has become known, she inspired countless women to “check their boobs” and raised over $4 million for medical research.
A phenomenal achievement, one that today has become her legacy.
In an announcement via social media, it was announced that Connie Johnson passed away at Clare Holland House hospice in Canberra on Friday afternoon.
"We lost Connie today. Or, as she asked me to say, she died of cancer today. It was so beautiful. We laughed, we cried, we sang stupid songs from our childhood to her, which she loved (mostly!)," the post read, "She went so richly, and with such grace. Trust me, she was genuinely cushioned by your love, till the end."
She was 40 years old.
Born Constance Johnson, Connie grew up alongside Samuel and their sister Hilde in Daylesford, Victoria, a spa town in the foothills of the Great Diving Range. The trio's mother took her own life when Connie was just a toddler, leaving them to be raised by their father, a writer and renovator.
He was, she once told The Weekly Review, the best role model she could ask for, especially during her chemotherapy: “I’d say, ‘I don’t want to have this needle’, and he’d say, ‘Well, Con, sometimes in life you’ve got to be strong and do something you don’t want to do, and now is one of those moments’. He was a very good teacher like that.”
The foursome moved around a lot as kids. But in 2002, Connie found a stable hometown in Canberra. There she worked in disability services and later bought and ran two successful bookshops with her husband, Mike.
There in a small, two-bedroom apartment in the inner city suburb of Kingston - "just an ordinary Australian home, in an ordinary Australian suburb" - she lived with him and her boys; Willoughby, now 11, and Hamilton, 10.
How Samuel lives with so much sadness and spends his time being there for others dealing with cancer. Post continues below.
As well as being her home, this unit was the beating heart of Love Your Sister. The place where the ideas were hatched, social media was managed, from where she tracked her brother on his record-breaking 12-month, 15,995km unicycle fundraising ride around Australia in 2013, where she planned this year's Big Heart Project.
The latter was a "last hurrah" of sorts for Connie, one that broke the world record for the longest line of coins and raised $2.2 million for breast cancer research at the Garvan Institute in the process.
After spending 10 years of her life being treated for various cancers, Connie ultimately stopped chemotherapy in April. Her organs were taking too much of a battering, the cancer was "everywhere" and her body was struggling to cope.
As was her desperate hope, she had lived long enough that her boys would be old enough to remember her, that she could to create more with them.
Connie was told her death would be peaceful, that she would go into liver failure and simply slip away. But she was still terrified.
"I have this thought that comes into my head all the time, where one day I'll be holding the children's hands, then I'll be gone," she told The Project in May. "My pain will be over, and theirs will just be beginning."
Our thoughts are with Willoughby, Hamilton, Mike, Samuel and all of Connie's friends and loved ones.
While Connie Johnson's spirit and strength of purpose was rare, breast cancer is not. To help further her cause, please donate to Love My Sister here.