Real Life

Blindly in love

Greg Johnson lost his eyesight and the use of his arms to a rare condition, but with the support of his wife Kathryn, he's getting ready for the race of his life.
Blind foundation

While Kathryn Johnson gets ready for her busy day as a nurse practitioner at children’s hospital Starship, her husband Greg waits patiently in the living room of their Auckland home. Without her, a simple task like making a cup of coffee is next to impossible. He even has to rely on his wife to feed him his cereal and yoghurt, before she heads out the door to start her 10-hour working day.

“Showering I can get away with on my own, but it’s things like dressing myself and eating that I can’t,” Greg explains.

“And I’ve had to learn how to shave him!” Kathryn laughs.

Greg maintained his independence with the help of a guide dog, until he lost the sensation in his arms.

For this couple, maintaining a sense of humour has been an essential part of their 10-year marriage. Greg suffers from the hereditary disorder Von Hippel-Lindau syndrome (VHL) and has had to undergo countless operations. When he went blind seven years ago, he managed to stay relatively independent and, with the help of guide dog Jazz, continued working in customer services and studying. He represented New Zealand in blind cricket and won national titles in blind lawn bowls. But after two recent operations to remove tumours from his spine left Greg with no sensation in his arms, all that has changed.

What he can achieve on his own, though, is remarkable. Greg (40) uses his mouth to turn the key in the door lock, and his nose and teeth to scroll through emails. But he admits he hates relying on Kathryn (39) and his parents to help with many ordinary day tasks.

The couple are hoping to travel to the US in November so that Greg can run in the New York Marathon.

“Blindness is an inconvenience,” he tells, “but now I feel for the first time like I have a disability. I get frustrated because I know what I want to do, but I can’t get my body to do it.”

Kathryn nods in agreement. “You go through a grieving process when you lose your vision, but then you adjust. Then the hands go, and that’s fine. But when it’s the feet,” she jokes,”it’s the retirement village for you!”

When the couple met at a bar 18 years ago, Greg had already had one eye removed.  After experiencing vision problems as a teenager, an ophthalmologist confirmed one of his eyes was full of tumours. The discovery unlocked a medical mystery for Greg’s maternal family, who had been plagued by brain tumours and kidney cancer. It was DNA testing that finally revealed the disorder.

While VHL affects everyone differently and is manageable for many sufferers, there’s still no cure. The fact that it causes cancer in places like the kidneys and pancreas means it can also be fatal.

“My grandmother died when I was young, my mum experienced brain tumours, and my auntie and uncle both had kidney problems,” Greg recalls. “My sister doesn’t have it, but if Kathryn and I were to have kids, it would be a 50/50 chance – a coin toss.”

The couple (pictured on their wedding day) have decided not to have children due to the risk of passing the syndrome on.

Greg says the couple’s decision early on not to have children was a relief, especially as his health began deteriorating so quickly five years ago. He’s still living with non-cancerous brain and kidney tumours, which doctors will remove once they are big enough. With Greg’s tumours growing, the couple intend to make the most of this year.

Not only is Greg about to complete a certificate in Sport and Recreation at the Auckland University of Technology – with the hope of working as an adviser for the Blind Foundation – he’s gearing up for the New York Marathon.

Both Greg and Kathryn’s thoughts have turned to fundraising, so they can travel to the US with a group from Achilles International New Zealand – a charity that helps disabled people achieve their sporting dreams. Greg’s already started training with help from his physiotherapist and sighted guide Marcelle Dowd.

Greg ran the Auckland Half Marathon in 2013 with Kathryn and his sighted guide Marcelle (right).

He says competing with 50,000 people in the world’s largest sporting event will be a dream come true, especially as Kathryn will be by his side.

“She’ll probably duck off with Marcelle to do some shopping,” he jokes. “But seriously, it’s going to be noisy, it’s going to be stinky – it’s going to blow my senses away. Everything is going to hurt, but the reward of finishing will be worth it.”

To help Greg and Kathryn get to New York, visit givealittle.co.nz/fundraiser/gregjohnsonny2015.

The facts

Von Hippel-Lindau syndrome is a rare, usually genetic disorder affecting around one in 32,000 people worldwide. The VHL gene is normally responsible for making a tumour-suppressing protein. When the gene is mutated or inactive, multiple tumours can grow in the body’s organs. Most people with VHL will begin showing signs in their teens or twenties and the syndrome is different in every patient. Even within the same family, people’s symptoms will differ. While 10% of children with VHL have eye or adrenal problems before the age of 10, some people don’t develop problems until their eighties.

Words by: Anastasia Hedge

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