The girl with the glass eye collection

IT’S the day before Jessica Clark’s school formal and she can barely contain her excitement.

The bubbly teenager holds her red gown against herself, twirling gently from side to side while explaining the various design elements in great detail.

The neckline is “a bit Audrey Hepburn” and the skirt is full and poufy, but not too much so.

“It has a lace-up back, which is so pretty, and look at all this (lace) on the front,” the 17-year-old gasps, running her hands gently over the frock. “I loved it the moment I found it online.”

For all her glee, Jessica admits she’s a little nervous about wearing super high heels for the first time, a black patent pair that makes the dress pop.

“I’ve been practising walking in them, so I reckon I’ll be fine,” she says.

Although there’ll be some ballet flats in her clutch, she whispers — just in case.

It was November last year when we met and the teenager was like any other in Sydney at that time of year. Post HSC and pre-university results, and absolutely obsessed with the one night that’s been on her mind since grade 12 started.

Where Jessica differs is driven home when she lines up her collection of glass eyes on the kitchen table, from lightest brown to darkest.

“This one is my favourite,” the Pride of Australia finalist says. “I had it for like eight years. And this one, you can see it’s a lot lighter. My eyes are quite dark so it doesn’t work anymore. I got a new one earlier this year that I quite like.”Her long-time eye maker retired a few months ago, mum Rebekah explains, so they placed a bulk order.

Jessica was two-and-a-half when doctors removed her left eyeball, following a gruelling battle with a rare but aggressive cancer.

“I thought there was something wrong from the time she was about six months,” Rebekah recalls.

“She had a slightly turned eye but the doctor kept saying it was fine, that babies have weak eye muscles, so I listened to them. But when she was 10 months old, we were in Melbourne visiting my dad for a holiday. I was changing her nappy and suddenly I noticed that I could see through her eye to the veins behind.

“I went back to Sydney and took her to the GP. We were at a specialist an hour later, it was the Friday afternoon, and Monday she was admitted to The Children’s Hospital at Westmead.”

Jessica was diagnosed with bilateral retinoblastoma. Plainly speaking, it means cancer in the retinas of both eyes. What Rebekah had seen a few days earlier — that terrifying vastness where the pupil should’ve been — was a result of Jessica’s retina completely detaching.

“We were told she’d have six to nine cycles of chemotherapy,” Rebekah recalls.

At this mention, Jessica laughs. It was 19 rounds in the end, she says, by which point her little body was battered, her hearing was impacted and doctors were worried about her kidneys failing.

“I relapsed three times in 18 months,” Jessica explains matter-of-factly.

Each cycle involved laser and cryotherapy treatments under general anaesthetic on a Monday, followed by chemo on Tuesdays, Wednesdays and Thursdays, with a five-week break in between.

Her right eye went into remission but tumours kept growing in the left, until it was beyond saving.

“They removed it and she went into remission. From there, it was an examination every month until she was five, then we went two-monthly and eventually six-monthly,” Rebekah says.

The devoted mum shuffles through photos of Jessica during those dark cancer days. There’s her very first bout of chemo, her tiny face framed with a thick mop of gorgeous, shiny brown hair.

In the next image, the toddler is bald with “a head like a boiled egg”. And there’s a picture of her the day after her eye surgery, a patch covering the left side of her face.

“All the initial things, they made me sick, which sounds terrible,” Rebekah admits.

“When they first taught me how to clean out her eye socket, I needed to go and sit down after. Same with the central line — the tube coming out of her chest, for the chemo to go in.

“I was traumatised by that period. She never had a problem though — she doesn’t remember it, thank God. She loved going to see Chrissy, her oncology nurse, and visiting the Starlight room.”

Because of the tumours and laser treatment, Jessica has minimal vision in her remaining eye and is legally blind. Her peripheral is shot, distance is barely there and the rest is obscured by massive blind spots.

“There’s a big blind spot right above my central vision,” she explains.

“If I look at your chin right now, I can’t see the rest of your head — all I see is the chin. The outside is a bit blurry and my good sight isn’t very much.

“The blind spots, they’re not black, there’s just nothing there. It’s hard to explain. Everything just disappears.”

Jessica was bullied in primary school, by cruel children who didn’t understand her impairment and the battle she’d endured. In early high school, she struggled to find her place.

“I was this scrawny little shy girl. It was hard to make friends, and find people who’d stick around. I didn’t know who my real friends were.”

While on an excursion in mid-2011, she found herself at a demonstration of the game Goalball.

“It’s a sport for vision impaired people,” Jessica explains.

“Players wear blacked-out masks, to make it an equal playing field as people have different levels of vision. The ball has bells in it. There are three people on a side at a time — a centre and two wingers.

“One side bowls the ball under arm, the other blocks it by diving on your side. You defend the goal with your body. And the width of the court is nine metres, so you really have to dive.”

Jessica tried it out and loved it instantly. At the end of that day, one of the coaching staff approached her and asked for her details. Within a few days she was at her first training session, and within a month represented New South Wales’ junior team at the national championships.

“Not only do I love the sport, but I’ve realised how many other people there are like me. They’re going through the same things.”

Goalball has taken her to Colorado, where she was the youngest player to represent Australia at the World Youth Championships. She’s travelled Australia competing, making a stack of good friends from here to Perth and in between.

And while her formal dress is beautiful, the outfit she’s most keen to show off on the afternoon we meet is her Australia jersey from the latest tournament in Singapore, from which she returned the day prior. There’s also a new gold medal to add to her growing collection.

“We played three games over three days, one of them the final,” Jessica beams, holding up the medal. “It was the best.”

That she so quickly had a go at something totally foreign, without question, isn’t terribly surprising. It’s been her approach to life since she was a child, her mum says. Rebekah encouraged her to try whatever she liked — gymnastics, swimming, horse riding, ballet and even soccer.

“I treated her as though she could do whatever she wanted, because she could, and so she’s grown up thinking that anything is possible,” she says.

At that moment the family cat Monty timidly creeps into the kitchen. He’s an oversized tabby with one eye and isn’t normally fond of visitors. He was a kitten when found outside a school, in a bad way after a brawl with a gang of feral felines.

“We saw him advertised in the local paper and he was perfect,” Jessica says.

“He doesn’t go outside. He’s a bit clumsy and he can’t judge height. His depth perception is a bit off too, like mine. When he tries to hop on my bed he misses a lot of the time.”

Despite her own fair share of challenges, Jessica has embraced a community minded spirit. Between study and elite-level sport, she’s thrown herself into charity projects over the past few years.

In 2015 she clippered her head in the World’s Greatest Shave and raised $2,000 for the Leukaemia Foundation.

And last year, she single-handedly organised See Like Me day at school, sourcing 900 eye patches so her peers could spend a moment in her shoes. She organised guest speakers to educate students about vision impairment and raised more than $3000 for Guide Dogs New South Wales.

“I just want to be an advocate for people like me, and disabled people in general,” Jessica says. “I empathise because I’ve been there. I want to try to fix some of the difficulties people live with.”

Her hope is to represent Australia at the next Paralympics in Tokyo in 2020, but in the shorter term there’s a competition in Canada this month and the World Championships in Hungary in June to focus on.

“I’ve got to get myself a part time job,” Jessica says.

Apart from some modest scholarships, the enormous cost of travel is covered by Rebekah, who works as a school administration officer.

It’s going to be a busy 2017, with the youngster starting university this month. She’ll study occupational therapy so she can help others on a fulltime basis.

But late last year, all she could think about was her formal.

“I’m going with a big group of my friends — all girls, which is fun. It’s a fancy dinner at Doltone House in Hyde Park, with dancing after. I love dancing. I’m really bad at it though, I just jump up and down, maybe whip out some disco moves, but I don’t mind. I have fun doing it and that’s all that matters.”

Story originally appeared on dailytelegraph.com.au in January 2017.

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