Arts society formed for camera operator who lost his life to ALS
Published Saturday, November 3, 2018 12:53PM ADT
HALIFAX -- Justin Grant had been a camera operator for more than 20 years when he met Rachel Bower on a documentary film shoot in 2012.
“I feel like what attracted me to him immediately was his sense of humour,” said Bower.
Two years later, in March of 2014 Grant was diagnosed with ALS – the same disease he had lost his father to when he was just 16-years-old.
But Grant was determined to not let the disease take over his life, and he continued to fuel his love of music by attending regular shows that the Carleton in downtown Halifax.
“A part of him could have let this destroy him, but what he always said was ‘I know ALS is going to take my life, but it will never take my love of life’,” said Bower.
So Bower decided to embrace technology, and began using a piece of equipment called an Eye Gaze, which would allow him to communicate by picking letters off a computer screen using his eyes.
“He flourished -- so suddenly he would be able to go online. He would be able to go on Facebook. He would be able to talk to his friends. And I to be honest didn't even know how he was doing it,” said Bower.
Bower lived with Grant throughout his last year, and the two travelled, went to concerts, lived life to the fullest and faced the daunting challenges together.
“I didn’t actually think about it, I just felt it,” said Bower when asked about making such a big commitment to a friend.
“I just went with what my gut wanted and my gut wanted whatever time he had left, I wanted to spend it with him,” she said.
Grant passed away from the disease in 2015, and Bower said it took her two years to find a way to alleviate the pain and grief she felt from the loss.
Bower decided she wanted to share Grant’s passion for life with other artists and give them a way to tell their stories, so she started the JRG Society for the Arts in his memory.
Next week, the society will award its first grant from a list of 30 Canadian applicants – all emerging artists, under the age of 30 living with a disability.
“I think what Justin left me with was this unbreakable and everlasting love of happiness,” said Bower.
“It made me realize what’s important in life right now – he gave me love.”
With files from CTV Atlantic's Jayson Baxter