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Real life: “I lost my sight overnight!”

Take 5 logo Take 5 13/2/2018 Lauren Irvine
When Ben Pettingill was in year 12, he lost 98% of his sight overnight from a condition called Leber's hereditary optic neuropathy. © Provided by Bauer Media Pty Ltd Ben Pettingill

Ben Pettingill, 22, shares his true life story:

I squinted, trying to focus on the whiteboard at the front of the classroom.

Sitting up the back, I struggled to make out the diagram our science teacher was drawing.

"Is that blurry to you?" I asked my mate Stuart.

"Seems fine to me," he said with a shrug.

For some reason, I could barely read the words in my text book, either.

It was as though I'd looked directly at the sun and my eyes were adjusting.

It had come on suddenly and I also had a throbbing headache.

After class, I called my dad and he drove me to hospital. There, doctors gave me special eye drops and did tests.

"You've got an inflamed optic nerve," a specialist said, explaining I'd need to stay in hospital overnight for observation.

He reckoned a month of steroid medication would fix it.

Waking the next morning, I went to check the time on my phone.

But glancing at the bedside table, I could barely see.

Everything in front of me was blurry black and white shapes. I rubbed my eyes and tried again. Still blurry.

a person that is standing in the water: Ben loved water skiing as a child. © Provided by Bauer Media Pty Ltd Ben loved water skiing as a child.

When the specialist came in, I was sick with worry.

I spent the next two weeks in a terrible dark world having scans and tests to try to find the cause.

Eventually, a specialist came to speak with Mum, Dad and me.

He said I had a rare genetic disorder called Leber's hereditary optic neuropathy which had wiped out 98 per cent of my vision pretty much overnight.

"I'm afraid there's no cure," he said.

I heard Mum burst into tears as I struggled to process that I was going to be blind for the rest of my life.

I'd never play basketball, go water skiing, see a film. Nothing.

What did I have left to live for?

Doctors gave me a cane to guide me, but I tried to convince myself I didn't need it.

I refused to take it to school and tried to get around just using my slight peripheral vision.

I couldn't see anything in front of me, just a few shapes and colours at the side.

"My sight's not as bad as my parents make out," I lied to my teachers.

For weeks, I hoped against hope to wake with restored vision, but every morning brought the crushing reality.

a man holding a basketball: He lived a very active life style. © Provided by Bauer Media Pty Ltd He lived a very active life style.

Two months later, I was walking through the school gates when I walked head-first into a pole and was sent crashing to the ground. 

Blood was trickling from my eyebrow.

It was mortifying, but made me realise I needed to accept that I really was blind forever.

It helped me to stop feeling sorry for myself, and I decided to get on with life.

My teachers helped me make a plan so I could still graduate Year 12 with my mates, and I reluctantly started using the stick to get around.

At home, I used my memory to find my way around, and my parents and little sister, Carly, kept everything organised so I knew where things were.

When I told Dad how much I missed waterskiing, he said he'd see if there was any way I could do it again.

He found a helmet with a radio inside so he could give me instructions from the boat.

Out on the water, everything felt the same, only now I had to rely on Dad to be my eyes as I felt the water under my ski.

It felt amazing.

a man carrying a surf board: Being back on the water felt amazing. © Provided by Bauer Media Pty Ltd Being back on the water felt amazing.

After I finished school, I really wasn't sure what I could do. 

One idea I had was to speak to other youngsters going through problems.

I was nervous about getting up in front of a lot of people so I signed up for a course in public speaking.

I practised with my coach, Amy, 23, each fortnight over the phone.

She lived in Sydney but when I travelled from Melbourne to meet her, I found her really kind and encouraging.

It was strange getting to know someone when I didn't even know what she looked like.

But I looked forward to our sessions together and found my confidence returning.

In fact I couldn't help but feel there was a bit of chemistry between us, but I worried I was misreading the situation as I had no visual cues.

We continued chatting on the phone for hours, but the calls were becoming more personal.

One night, Amy paused. "I have feelings for you," she said.

I was stunned and told her I felt the same. I admitted I hadn't asked her out as I worried she'd only agree to it out of pity.

a person posing for the camera: With Amy - she's beautiful inside and out! © Provided by Bauer Media Pty Ltd With Amy - she's beautiful inside and out!

"Your sight doesn't matter to me, Ben," she said.

We started dating and I moved to Sydney to be with her.

Eventually, we moved to Melbourne where she helped me start giving speeches.

My first talk was at my old high school where I told the kids that I wasn't going to let my blindness dictate my life.

And I haven't.

Last year, Amy and I walked the Kokoda Trail.

The terrain was incredibly rough and I couldn't rush it, even though I desperately wanted to get to the end.

It took a week of walking up to 11 hours a day and everyone took turns guiding me.

They had to walk right in front of me, and I listened to their footsteps.

When I crossed the finish line, I was exhausted but bursting with adrenalin.

I turned to Amy and told her that after a day of rest, I could probably walk all the way back!

"You're incredible," she said, wrapping me in a hug.

a group of people in a forest: With help from my guides I was determined to complete the trail. © Provided by Bauer Media Pty Ltd With help from my guides I was determined to complete the trail. She's been amazing in encouraging me to achieve my dreams.

People tell me she's beautiful on the outside and I tell them it just matches the stunning soul on the inside.

We've been together for three years now and want to spend the rest of our lives together.

I hope sharing my story will prove that nothing is impossible, no matter what life throws at you.

You just need to learn to embrace it.

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