Love Your Sister
It’s a beautiful country, and you don’t miss a thing at 15 km an hour!
What’s the craziest thing you’ve ever been dared to do? Maybe it was eating something gross on a trip to Thailand or walking up to complete stranger and making a fool of yourself. It could have involved an element of danger like abseiling or skydiving or even trying to outrun an out-of-shape security guard at a prominent sporting location – he probably just wanted to know what happened to your clothes.
What compels us to do this stuff and what’s the payoff? The rush of adrenaline? That killer Instagram post? The ever-so-manly scars we can tell our grandkids about: “Seriously kids, the shark was this big!”
What would motivate you to do something really ‘out there’: something that’s never been done before; something that cost you deeply?
Separated in age by just one year, Samuel and Connie were close as kids, weathering the normal bouts of sibling rivalry, occasional spats and shoe-throwing injuries (according to a forgiving – yet wisely wary – adult Sam).
Everything changed when at age 11 Connie was diagnosed with a rare tumour on her left leg and prescribed an aggressive treatment program. Reflecting on this difficult time Sam, now a successful and prominent actor and TV personality known for his roles on shows like The Secret Life of Us and Rush says:
“As a single dad, it was a very difficult time for our father. Having one child at home and another in the Royal Children’s Hospital was incredibly tough.”
At 22, having beaten cancer as a child, Connie was preparing to become a mother with all the joy and sweet anticipation that goes along with this happy time. Overnight, jubilant expectation turned to devastation as she was diagnosed with a molar pregnancy, a condition where tissue that normally becomes a foetus instead becomes an abnormal growth in the uterus. Again with the support and love of her family and early detection, she overcame.
On Connie’s eldest son’s birthday 11 years later she was diagnosed with breast cancer: “They ‘treated to cure’, unsuccessfully, and around six months later she was diagnosed as terminal,” Sam told us. “When she was initially diagnosed it never occurred to me that she would not beat the cancer this time, just like the other times. I didn’t want her to go through treatment again, but I was confident of a good outcome. I had a sense that she could beat anything.”
So in the aftermath of this news, in a kitchen in Canberra, Sam asked his sister, “What do you want your legacy to be?” Expecting that maybe Connie might want to go skydiving or something, Sam muses “I really should have known better”. For Connie has a plan: a plan to save as many women as she can and maybe to change the life of a certain sibling. It was perfect … a DARE. A great big, crazy, impossible dare that became a promise:
“I dare you Sam, to set a Guinness World Record for most distance travelled on a unicycle AND raise a million dollars for breast cancer awareness.”
Ride a unicycle how far exactly? Well the current record holder at the time was a man by the name of Lars who managed 14,686.82 km across 48 states of America. 14,686.82 kilometres!
‘Love your Sister’ was born and so began two years of preparation for this awesome endeavour. With a determination that every cent raised would go to the Garvan Institute, Sam, Connie and a small group of volunteers began to plot a route that would see Sam and his unicycle traverse the vast nation of Australia in a over the course of twelve months raising money and awareness. They would need to recruit a support crew who would give a year of their life for no pay: a rag-tag bunch of slightly unhinged (in that good way) and exceedingly gifted men and women. There were relatives, mechanics, journalists, web designers, photographers – and of course Connie would be there in Sam’s heart.
For these two years Sam knocked on doors, made phone calls, raised enough money for food and fuel and sourced loans and donations of equipment for the trek.
When asked about the route Sam said:
“We were aiming for a figure eight around the mainland, followed by a lap of Tasmania. I wanted to do the easternmost and westernmost points, as well as highest and lowest. The Oodnadatta Track and going up through the middle of the country were personal goals for me as well. Those factors ultimately contributed to the route planning, along with factors like distance between towns (because you can only get so far on a unicycle in one day)!”
Then came the gruelling physical training and media spruiking that is so necessarily part of the endeavour to raise awareness.
So on a sunny February morning in 2013 Connie and Sam finished some early media commitments and with the ‘Boobmobile’ and support crew in tow, headed off to Federation Square in the heart of Melbourne for the big launch. Both are feeling a curious mixture of excitement, nerves and even sadness at the impending separation before them. After a blur of heartfelt speeches, drum bands and human tunnels the journey began with a drop down a ramp from the media stage to the road that stretched 15,000 km in front of Sam and the team he would rely on for the next 12 months.
Wasting no time the team headed northwest through the heart of Victoria at the stately pace of a single-wheeled, human-powered vehicle.
One month, some saddle sores and more than 1,500 km into the journey, the team arrived at the town of Marree in South Australia, the start of a gruelling stretch of road called the Oodnadatta Track. According to some prominent 4WD guides, over the ensuing 617 km you can expect corrugations, potholes, loose stones, sand patches and occasional bulldust. And the track is ‘probably only suitable for four wheel drives’. The track passes through a mixture of plains and undulating countryside, skirting at its southeastern end the vast expanse of Lake Eyre, largely following the route of explorer John McDouall Stuart and, later, the Old Ghan railway. For Sam this was one of the most physically demanding parts of the ride. He described this leg as a “sandy, corrugated, fly-blown nightmare, not suitable for unicyclists at all”.
Heading due north, the team made for Alice Springs and Uluru, a place with which Sam had unfinished business. “Visiting Uluru was on Connie’s list (of important places to visit on the trip) and mine. I needed to return the small rock I’d pinched on Grade 6 school camp. I didn’t know any better back then!”
Far from being just physically tough, Sam explains that beating the mental barriers was a daily task:
“It doesn’t matter what is wrong with me or how many kilometres I’ve unicycled today – whatever pain I’m in does not compare to Connie’s. It toughens you up a bit. Positive visualisations (like meeting Connie at the finish line) helped, but sometimes you’ve just got to get the goals down to the smallest thing you can to keep going. Things like, ‘I just have to get to that curve in the road, or the next rock, or whatever’.”
For the next eleven months and 13,500 kilometres, Sam and the LYS team would traverse the length and breadth of this vast and diverse continent stopping at countless townships to ‘do a dare’, raise some funds and spread their simple message: “Don’t fall into the booby-trap, be breast aware!” There would be rodeos, primary school fundraisers, and radio and television interviews, and for Sam each day, there was the road.
Now, more than a year after the team first set out, more than $1.5 million has been raised for breast cancer research.
When we asked Sam to share his personal highlight for the journey it was “… Uluru, swimming with dolphins, seeing the outback and meeting as many amazing Australians as I could. It’s a beautiful country, and you don’t miss a thing at 15 km an hour!”
But for Sam and Connie what started as a kitchen dare on steroids has became more than raising money, and so much more than a really long ride. It goes far deeper than just a brother’s love for his sister. There is a whole community of women suffering from breast cancer, who, with their families, daily struggle with pain, disappointment, invasive and costly treatment and in many cases dreadful loss. This epic journey, while being deeply personal for two siblings going through a terrible tragedy, is about the fight they all share.
“I hope they know that they’re not fighting this on their own, and that I’m fighting for them. Too many families have been devastated by this disease; it has to stop, and I won’t stop until there’s a cure.”
So what will Connie’s legacy be? Maybe daring: daring to look beyond the quagmire of a monumental personal loss, to live bigger than the problem and see to the possibility of making life better for someone else.
Daring to dream big – crazy big.
I am reminded of one of my favourite lyrics from Brooke Fraser’s Saving the World:
But while we’re waiting we could try saving the world,
or are we storing that up for a rainy day?
I’m anticipating the time when it’ll be my turn.
It could be fun to try.
I think that I’ll save the world …
Find out how you can get behind Love Your Sister.
Photos: © Love Your Sister
On Thursday, 8 September 2017, Connie Johnson died of cancer, just one day after she was awarded a Medal of the Order of Australia in recognition of her work with cancer patients.