Masks reveal the story within
Those with brain injuries share hope and pain through their creative works
Those suffering from brain injury know it as an invisible affliction.
For brain injury awareness month, the masks are off and on display. At Ottawa’s city hall on Friday, some 45 masks, colourfully painted by individuals suffering from brain trauma were shown by the Brain Injury Association of the Ottawa Valley. Personal written details were attached to each mask.
“It’s enlightening to see the stories behind the face,” said Wendy Charbonneau, president of the BIAOV. “Sometimes even families can’t see what they are going through.”
Charbonneau got involved with the association more than 20 years ago after her husband, Robert, suffered a brain injury. She has been volunteering five days a week for two-plus decades.
The brain injury association, one of 19 in the province, relies on community support and membership fees to survive. For the “Unmasking Brain Injury ” project, the BIAOV partnered with Pathways to Independence and Vista Brain Injury Services.
“The majority of people walking around with brain injuries don’t have physical injuries, so it is invisible,” Charbonneau said. “We’re trying to increase awareness, to put a face on the person and their feelings.
KATELYN-MARIE IRVINE, 21
Irvine was a typical, healthy girl growing up in Smiths Falls when her life took a turn at age 10. Her right side grew numb — partial paralysis, first in the arm, then down the leg.
Eleven years later, she finally received a correct diagnosis: Rasmussen’s encephalitis, a rare inflammatory neurological disease associated with severe seizures, loss of motor skills and speech, brain inflammation and dementia.
Irvine has had complications from a shrinking of the left side of the brain.
Nevertheless, she graduated high school and was part way through a college semester when her seizures became too much for her to continue. Irvine moved to Ottawa to be closer to her doctors.
“It’s been rough at times but … I’m just living my life with the change I want to see in other people,” she said. “Now I volunteer at a hospital (Ottawa General) helping other patients because it was the volunteers who helped me stay positive when I was sick. I want to give back any way I can.”
HER MASK: Irvine’s mask has two faces, a dark side marked by large tears, the other a radiant sky-blue, Irvine’s favourite colour. “It brings out the passion I have,” she said.
The mask features a mirror, to reflect support of family and friends, a shining star (“because nobody can make you happy but yourself, be your own shining star”), and a flower pot to symbolize the importance of enjoying small moments in life every day.
“You never know when your time is up,” said this wise young woman. “At age 10, my injury opened up my eyes to not take anything for granted.”
Irvine works at the brain injury association office three days a week.
MURRAY MACDONALD, 39
MacDonald came to Ottawa for a career in radio broadcasting but on Good Friday in 2006 was struck down by a virus, herpes simplex encephalitis.
MacDonald went back to school to study travel and tourism, and was working until the virus came back in 2016, causing him to go blind.
“The initial brain injury attacked my right eye, causing the retina to detach, MacDonald said. “Ten years later, it attacked the left eye. But the retina is not detached. It is improving. My eye surgeon (Dr. Bernard Hurley) thinks I should have enough vision to be independent again.”
HIS MASK: Illustrates an insect, a bug, for the virus that could have been caused by a bite when he was young. There is also a large brick wall representing his own stubbornness when people in hospital suggested he would never be able to do much.
A rainbow is for the brain injury association, which helped foster his new-found love of arts and crafts.
“It’s been a gift to work with others who understand, and build new skills,” he said.
Despite his vision challenges, MacDonald answers phones at the association and volunteers at an assisted living home, helping patients suffering from dementia and Alzheimer’s disease.
JACK BERRY, 50
Five years ago, Berry was walking his dog, Marley, in Ottawa’s east end when he was attacked for no reason by a man wielding an iron rod. He was struck on the head several times and left to die. Berry was in hospital for six months before he could go home.
“It nearly killed me but it didn’t,” Berry said. “I’m doing pretty good. I can’t walk that great, but I use my cane. I am grateful to be alive because I was near death.”
HIS MASK: Images celebrate Berry’s life as a political activist. He takes pride in photos showing him protesting against free trade with the U.S. (how that topic has turned lately). He also played a role in getting children free letters to Santa at a time when the post office was in the business of charging for stamps to the North Pole.
The other side of the mask shows Berry taking part in the Step Up program, which allows brain-injured individuals to regain their self-esteem by working in the community.
“I still have my dog, Marley, but I miss walking him, because of my balance,” Berry said.