Resilient Johanna Garvin talks to Sarah Harris about how the CPA and its Steptember Campaign helped her achieve such incredible feats in her life.
Any 27-year-old with a CV like Johanna Garvin’s would have reason to be proud but her life could have been very different without some important support… here she shares her moving story.
Growing up, I was the kid with no confidence. I was born 11 weeks premature, suffered a stroke when only a few days old and was diagnosed with cerebral palsy (CP) which eventually left me in a wheelchair.
With support, I managed well – until I hit my teens. At a private all-girls school, I not only had to deal with the usual angst of puberty, I found myself struggling to make friends, to learn and then to deal with the death of my father.
He had a rare cancer and died within a year of diagnosis. I was 13.
The more my confidence dwindled, the harder life became until I reached a place where I was so miserable I really didn’t want to go to school any more.
The Cerebral Palsy Alliance (CPA) had always been there to help develop my physical skills, now they stepped up to boost my confidence as well.
They told Mum about counselling services at the Sydney Children’s Hospital and this not only helped me cope with my grief at losing Dad but to get my life organised and to make plans. I also joined a mentoring group where I met other teenagers with cerebral palsy. Discovering I wasn’t the only one having a hard time was a great help.
I became happier and braver (I even went skiing, flying down the slopes on a sit-ski) and realised I had support to navigate my way through life. When CPA helped me get a power-assisted chair – an $80,000 purchase I could never have afforded otherwise – life became better still as I revelled in my new independence.
School was less supportive in fact my principal called Mum in to tell her they wanted me to leave. They thought the HSC would be too hard for me but Mum was having none of it. She told them I would do what subjects I could at school then finish the rest at TAFE through Pathways.
This enabled me to go to University to study communications and media and from there I applied to do an overseas exchange at a college in Minnesota that had a great film studies program.
I’d never been overseas alone before and the Minnesota college had never had a student with a disability either. I’m sure many people thought I had enough challenges without adding to them but, at 23, I wanted to get out of my comfort zone – to travel, live on campus and meet new people.
Mum was as supportive as ever but even she was worried. “You don’t have to prove anything to anyone, she told me.
She and my stepdad travelled over to help me settle. When they left, I cried for a week. The homesickness was terrible. My chair couldn’t cope with the snow and I had to hire an electric one from a nearby nursing home. But once the homesickness eased, I had a wonderful time and returned to Sydney with ambitions to be Baz Luhrmann.
After a six month diploma in screen and media, I went on to work for Create NSW (formerly Screen NSW) and to direct and co-write The Milky Pop Kid, a mockumentary about authentic casting of people with disabilities. It was shown at the 2017 Sydney Film Festival.
I felt I’d come a long way from the girl with no confidence and then I got a call from Gabriel Maciel at CPA who presented me with my biggest challenge of all.
Two marathon runners, Steve Birnie and James Alderson wanted to take someone in a wheelchair to compete in a seven marathons across seven continents in seven days event. It would involve flying to Antarctica, Cape Town in South Africa, Perth, Dubai, Lisbon in Portugal, Cartagena in Colombia and Miami in America, running a marathon in each one.
CPA knew I took care of my fitness and had a can-do attitude so Gabriel asked if I was interested. It would be a great fund-raiser.
It was my most daunting challenge yet but I really wanted to thank the CPA for a lifetime of support so I said yes – and proceeded to spend the next six months feeling incredibly anxious.
My GP was worried about the risk of Deep Vein Thrombosis because of all the flying. I was worried about lack of sleep, handing my independence and mobility over to virtual strangers and the fact no-one in a wheelchair had ever done anything like this before.
I prepared as best I could, training harder than ever in the gym and as our departure date arrived and our plane took off from Sydney, I looked down and told myself: “OK there’s no turning back now.”
In Antarctica, the steep slippery stairs from the plane meant I had to ask for help to be carried. The cold was incredible. I didn’t have the right clothes and I had to speak up and ask for more layers but it was fantastic. Gazing across the expanse of white ice I literally had to pinch myself. I’d never thought it possible I would see such a thing.
In Cape Town I got horribly sunburned and as my chair bumped across the cobblestones of hilly Lisbon and kept getting stuck, we eventually had to stop to change the wheels.
Colombia presented yet more adventures. I had to be transferred from the plane in a catering truck and, fortunately, no-one told me til later that the holes in the side had been made from bullets. Colombia too was the only race that was on the road rather than a track and we were running at night so it was stressful trying to give directions and call out to people to move out of our way when my body was craving sleep.
Each race took five or six hours, we’d go back to a hotel for a couple of hours, nap and shower, then catch a plane to the next location.
By the finish I was physically and emotionally spent. I’d said I’d come back to work but managed only two days before admitting I needed time off. That was good, however. It gave me time to think about what we’d achieved. I reflected on how many people had voiced their apprehension and although I’d been scared too, I’d insisted: “This is my decision.”
I know now it was the right decision. When opportunities like that arise you have to take them and it had provided yet another boost to my confidence. I’d adapted to all kinds of situations I’d been fearful about.
Best of all, I was able to enjoy thinking about the $70,000 we’d raised with our efforts and all the ways it would enable others to participate in life and take on new challenges just as I have.
As you read this, I’ll be working on my next films – one about applying for work when disabled plus a web series about dating with a disability.
Like every new goal, I’m approaching that the way the CPA taught me: “OK you want to do this? Let’s find a way to do it.”
To register your company’s support, and for more details on this worthy cause, visit www.steptember.org.au.
Your Steptember kit, consisting of a pedometer, lanyard and booklet, will be delivered right to your doorstep.
Every dollar you, or our company raises, will provide vital equipment, therapy and services to children and adults living with cerebral palsy. Or, you can choose to raise funds for ground-breaking research into the prevention and maybe even one day a cure.