real life

"I am not breakable": When Steph realised she was going blind, she also realised her dream.

 

When Steph was just 19, a doctor told her she was gradually going blind.

She was diagnosed with cone rod dystrophy, a degenerative condition of the eyes that leads to gradual blindness.

“I think I kind of knew,” Steph, 31, tells Mamamia over the phone from her Melbourne home. There’s no sense of flatness in her voice or drama in her story. It was what it was, it is what it is.

“My mum got diagnosed before I did, because it’s a genetic condition.

“I remember after that being really conscious of my vision, but everyone told me I was being paranoid because of my mum. I knew my night vision wasn’t what it should be and that’s what starts going first. I had to go to Sydney and get heaps of tests.

“Then they told me.”

At the beginning, Steph says, she was fine. She expected it. Then reality came thick, fast and furiously.

“I went through a really big bout of anger, like I was really angry at my mum in particular. My mum and I are so close, and I didn’t really speak to her for 12 months. And when I did, I wasn’t very nice. I just played the blame game.

Image: Supplied.
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"In my head, there was no way I was going blind. I told myself it's not going to happen, they are going to find a cure. That was the only way I could deal with it. I was in denial for so many years.

"It wasn't until 18 months to two years ago where I really accepted it."

Now, Steph and her mother are each other's biggest champions. But before she reached a point where she was at peace with her diagnosis and excited for the future, Steph had a lot to navigate first.

At 23, she lost her driver's licence. After spending her time out of school working in real estate, her "passion", it became increasingly difficult to do what she loved. She couldn't drive to properties, and in her industry, that was one of the most important parts of the job. So, just before she lost her sight entirely, she tried desperately to see the world before it faded into her memory.

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"I sold my car, went travelling for a while and then starting working on Daydream Island for a year. My dad was at me saying I needed to settle down and buy a house, and I thought no way, I am going to travel as much as I can while I can see.

"I ended up travelling into Darwin - only because a friend made me and I was only meant to be there for a week. I left four years later. I just fell in love with it."

In Darwin, Steph was able to do some work in real estate once again, managing the administration of a branch, with a workplace totally supportive of the fact her ability to work well and her ability to see weren't working in opposition with one another. She could do her job, she knew, and she could do it well. Sight or no sight.

Eventually, though, the pull of home called her back. She made her way back to Armidale in New South Wales and, once again, worked in real estate.

However, the more sight she lost, the more exhausted she became. She would come home and sleep. Eat dinner and sleep. Wake up and want to go to sleep.

Steph and her fiance Rob. Image: Supplied.
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It wasn't until a friend recommended superfood supplements that she found her entire world became more manageable again. She could live without constant cravings for sleep.

"After studying it for a while and taking it and seeing the results, I thought, I want to help other people with this. For the last few years, I've wanted to do a bit of charity work but obviously being blind is hard. I can't go and work in a soup kitchen or volunteer at Salvos and I was really frustrated with that," Steph said in a recent Facebook video.

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"I just wanted to help people. I decided to sign up and become a distributer. I thought, if I can't help the disadvantaged, I can certainly help people with their health or their sleep or certain medical conditions."

And so, Definitive Wellness was born.

Together with a massage course she undertook in Darwin - knowing soon after she left she'd need a career back up plan - Steph began selling supplements and giving massages.

The only road block is those who think her sight is a barrier to business.

"People think I am not capable, they think I am going to hurt myself. That's why I want to get out there and do some public speaking. Even though I don't have sight, I can do everything someone with sight can do.

"The biggest thing is, a lot of people look at me and almost discriminate. I have to be careful using that word, but a lot of people look at me and think I am faking it. That's made me want to succeed even more. I think they think I don't look the part - I don't know what they think a normal blind person looks like -  but when I go out with my guide dog, people ask me if I am training the dog.

Listen: Rebecca Sparrow and Robin Bailey speak about those moments it feels like everything’s against you - losing a job, going through loss, or having to start a new career. (Post continues after audio...)

"The other side of things is that people are very hesitant in employing me. I never had this issue until probably my last workplace in real estate, but people get scared when things change. The way I use a computer now is with a screen reader and I have a lot of apps of my phone. Some people get really put off by that. I can still do my job just as well as anyone else, I just do it differently. People's perceptions are very mixed."

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As well as getting engaged on Christmas day (yes, she jokes, wedding planning is just as fun as you might imagine with no sight), Steph has big dreams and big ideas for the business she's only just created.

She puts it simply, with optimism and drive in spades: "I have so many plans it's ridiculous." More than that, Steph has a few messages. Firstly, for those who may be in a dark space - an angry space, perhaps - much like the space she found herself in in the years before she went blind:

"You've just got to keep put one foot in front of the other," she says. There is no other option, she believes.

For those who underestimate her, or for those who think her blindness will be a hurdle to her success, she is "not made of glass", she tells me.

"I am not breakable."

At 31, more than 12 years after that initial diagnosis, Steph has never wanted to be known as "that blind girl".

But with big ideas, a big heart and a big future, there's little doubt that's all she be.