One per cent vision, and a lot to get done
Adelaide man Josh Murphy has a degenerative disease that’s left him with one per cent of his sight — so he’s gone shark-diving, race-car driving and bridge climbing to make the most of the vision he has left.
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Josh Murphy only caught fleeting glimpses of the big grey nurse sharks circling him in the Sea Life Sydney Aquarium, but he could sense their presence.
Every time they passed him he felt their vibrations through the water as the curious creatures came closer and closer.
It would be a brave encounter for any diver, but a degenerative disease has robbed Josh of 99 per cent of his vision.
The shark dive is now one experience that the 29-year-old Wynn Vale man can cross off the long bucket list he’s determined to finish before he loses the very last of his vision.
“My condition is called retinitis pigmentosa,” Josh says.
“It’s a degenerative condition, meaning that it gets progressively worse over time and will eventually lead to total blindness.”
Josh’s brother Kieran, younger by two years, also has RP and currently has five per cent of his vision left.
“RP causes tunnel vision, and I have no peripheral vision,” Josh says.
“If something’s not directly in front of me I’m not going to see it. On top of that I have some blurred vision and light sensitivity, so if I’m going from outside to inside or vice versa it takes a long time for me to adjust. At night I basically don’t see anything other than streetlights, which can make navigating through the city a bit tough. I guess I missed out on the nightlife there.”
Josh stared compiling his bucket list around three years ago when he noticed that the little remaining sight he had was rapidly fading.
“Until then my RP was tracking a pretty steady rate,” he says.
“Now my vision has really started to deteriorate. Five or six years ago I was still able to pick up a book and read it. It would be slow going, but I could do it. I just can’t do that now.
“It could be that I’m still fine for another five years, or it could be that in six months’ time I’ll be totally blind. I’ve accepted that it’s going to happen.”
Apart from diving with sharks and walking over the Sydney Harbour Bridge, both experiences which Josh accomplished last weekend, the ticked items on the bucket list include skydiving and taking a hot lap in a V8.
On the “to do” list is visiting Uluru, attending a Dawn Service at Gallipoli, walking the Kokoda Trail, following an Ashes tour in England, travelling to Japan during cherry blossom festival season, and visiting historic sites in Italy, Greece and Spain.
“At the end of the day I guess it’s all about what I can afford,” Josh laughs.
Josh’s mum Zoe says she first noticed that there were issues with her son’s vision when he was just a year old, putting her on a roundabout of GPs and specialists while she searched for answers.
“When it’s your first child, people say you’re being overprotective, you’re being paranoid,” Zoe says.
“But I persevered and eventually Dr Michael Lane at the Women’s and Children’s Hospital diagnosed Josh with RP.”
By this stage, however, Zoe was already pregnant with her second son Kieran.
In most cases, RP skips every second sibling, meaning Kieran should have been spared the disease. Unfortunately it wasn’t the case this time, and Josh’s younger brother was also diagnosed with RP.
Now 27, Kieran has lost 95 per cent of his vision but it hasn’t stopped him from pursuing both swimming and cycling at a high level.
He’s currently working towards selection for the 2020 Tokyo Paralympics.
Growing up, Josh says it took him a while to come to term with the fact that he didn’t see like the other kids in primary school. In high school, as his vision worsened, it became more difficult to deal with and he was excluded from some of the rites of passage available to other kids.
“In my teens it was much harder to accept, especially when all of my friends were out getting their drivers’ licences,” he says. “But at least I was never the designated driver.”
Josh’s shark dive came about from an email inquiry to Sea Life Sydney Aquarium to check if it would even be possible.
To the Murphy family’s surprise they made it happen straight away and didn’t charge Josh for the experience.
There were, however, some logistical problems to overcome first.
“We had a whole heap of touch signals worked out,” Josh says.
“If he (the dive guide) grabbed and squeezed my arm that was to check I was OK, so I had to give the OK signal.
“If he touched my nose that was to tell me to equalise the pressure, if he touched the top of my mask that was the signal to clear the water out. The sharks were grey nurses, wobbegongs and Port Jackson sharks, so nothing too dangerous. Grey nurses look really mean, but they can’t hurt you. It was fantastic.
“My eyes never really adjusted to the dark lighting, but I could still catch glimpses of the sharks. Some got very, very close, and I could feel that they were around me.”
For Zoe, watching on from the other side of the glass, it was a proud moment.
“There I am on the video waving away to a person who cannot see me,” she laughs.
“I have four boys and they all have different challenges but they’re always making me proud.
“One thing they’ve been taught is that if you won’t the achieve something then you have to work hard and nothing is impossible.”