In the summer of 2008, I spent two months teaching at a school just outside Arusha in Tanzania. It was a volunteer position, of course – a chance to share the knowledge I had accumulated in my 20 years and in turn, to experience life in a culture vastly different from what I was used to. What I learned in those brief two months is that the connections you cultivate with people are at the heart of a life that is successfully lived – much more than any financial or academic achievement.
Everyone wants to feel appreciation for the work that they do – and volunteering your time to others, though it can at times be thankless, is a task full of meaning. The cultural exchange that took place between the students, staff, their families and myself during that summer was very rewarding.
Returning to Canada, I knew I wanted to be more involved in my community – so I volunteered through a few organizations, one of which involved being a visiting buddy to an elderly couple in the downtown core. I was there as that couple, who have since become my friends, moved from independent living to a nursing home. I saw the importance of freedom, interaction and activity in a demographic that is so quickly ignored and dismissed.
These friends of mine struggled through many things before they finally found a care situation that gave them that sense of personhood – that feeling that they weren’t simply confined to a room in a ward to wait for the inevitable. Their story has been all the more inspirational, because they are both also legally blind.
I thought of them today after reading Andre Picard’s piece on palliative care in The Globe and Mail.
Even as our bodies age on the outside, our insides remain the same chaos of memories, thoughts, feelings and experiences. People nearing the end of their lives still long for interaction, company, and mental stimulation – something that the care home in Picard’s article is able to provide even to an elderly man with terminal stomach cancer. No one should be made to feel cast aside and unimportant at the end of their lives – a time when you should have more support than ever as you look back over the whirlwind of life and make your peace. This is the time when people look for friends with whom they can share their experiences, their wisdom, and their lives.
I was happy to delve into the story of my blind friends for a piece that was published during my education, in my program’s Pundit Magazine. I hope it shares how truly full of hope and life the elderly are, and how much they deserve proper care and treatment.
Denis wasn’t born blind.
He spent long childhood days in Moncton, digging his way through eastern Canadian snowstorms and watching the clouds move across the sky.
As he turns his head toward the conversation- blinking slowly, smiling gently – it’s hard to believe his eyesight is gone.
But the fact remains – Denis hasn’t had sight since 1985.
“It’s habit,” he says, with remnants of a French accent. The light blue rings around his irises attest to that.
He sits on the edge of his single bed in a room he shares with Diane, his wife of forty years. Perched in her own single bed, she tilts her head in his direction, listening for his voice.
Diane has been blind since birth.
“Qu’est-ce-qu’on fait?” she asks – What do we do next?
Denis turns toward her, reminding her gently that they have a visitor. She nods– a gesture that goes unnoticed.
The muffled sounds of metal carts and nurses’ voices cover the hum of fluorescent lights. Soon, a nurse will knock on the door to offer a glass of juice.
Denis reaches for the handle of his bedside drawer in a confident, well-rehearsed movement. He pulls out a printed letter he wants read, but he has already memorized every word of it.
The letter lays out the brand new retirement facility he and Diane will be moved to. The setting is idyllic, surrounded by acres of green land.
But to Denis, it just means further isolation.
“People can’t jump in your shoes if you’re blind,” he says.
He misses the freedom to leave his room and step outside into fresh air, but he knows he can no longer care for Diane on his own. Long-term care has become a necessity.
Denis fiddles with the volume on his hearing aid and sighs.
“All you can do is think all the time.”
“Seniors account for 70 to 80 percent of the blind population,” says Charles Bailey, who worked through the Canadian National Institute for the Blind for 23 years. He explains that those who end up in seniors’ residences must often learn to navigate buildings that aren’t designed for the blind.
“Builders go more for what it looks like aesthetically for someone who is sighted,” he said. The tougher the navigation, the more time is required to teach someone how to get around – an exercise that might be too time-consuming for overburdened staff.
Maria Kovacs is a blind deacon who advocates for blind rights.
“There’s a lack of opportunity to mingle with others,” she says. “The blind aren’t included in social life, you have to push to be talked to. Seniors are even worse off – they kind of get placed at the side of the room and forgotten.”
One of the biggest hurdles for blind seniors in overcoming physical isolation is access to information. They must have mail, calendars or schedules read to them because the vast majority do not know braille.
“Most people in their old age aren’t going to set out to learn an entire new language,” said Bailey, “especially when most people go blind after 60.”
Denis grew up as the youngest of his family, caring for his mother after his siblings moved away.
“She never fully recovered her health after having me,” he said. He was just nine years old when doctors diagnosed him with retinitis pigmentosa, a disease that harms the retina.
By 14, he had already dropped out of school to work at the sawmill. He became the sole breadwinner after his father returned from war with tuberculosis.
The Canadian National Institute for the Blind trained and employed Denis as he continued to lose his sight. He moved to Halifax, then to Toronto before finally settling in Hamilton. These cities were much better-equipped than Moncton for independent blind residents.
While working in Toronto, Denis lost his peripheral sight. Still, he lived a regular life while he worked at a canteen run by the CNIB.
“My friend said ‘I got a girl for you – you’ll be married in sixth months,” he says. “And that’s what happened. We met in October and got married in April.”
Denis, more than six feet in height, towered over his wife Diane, but what she didn’t have in height, she had in humour. When police sirens screeched past, she would smile and say, “uh oh… what’d you do?”
Forty years later, Denis still calls “bye, sweetheart!” when he leaves their shared room in long-term care.
“Because I’m blind, if she gets lost or forgets where she is, I can’t find her,” said Denis. “We’re here because of her illness.”
Two and a half years ago, Diane began showing symptoms of dementia.
Denis, standing resiliently as the pillar of his family for decades, felt his foundations begin to crumble.
Kazimierz Chrapka, Denis and Diane’s former music teacher and owner of The Music Stand, recalls their transition to long-term care.
“Denis told me they lost all their music tapes,” he says . Denis’ collection of cassette tapes chronicled years of violin lessons, with Chrapka’s voice guiding his hands during home practice. Chrapka had made similar tapes for Diane.
“Denis likes Scottish-style jigs,” he says , smiling. “Maybe it has something to do with growing up in New Brunswick.”
Denis’ violin and Diane’s keyboard made it into long-term care, but neither receives much attention now. The braille stickers have begun to peel off the instruments.
Diane read often, learning braille from the grey nuns at Toronto’s Nazareth Institute for the Blind. Denis conceded that his own reading was poor, having lost the sensitivity in his fingertips to years of rough work.
“Diane loved to read the Bible out loud at church. She was very serious about it, practicing all the time,” said Chrapka. She was also serious about piano, practicing diligently.
“What did I get today… an A or an A-minus?” she would ask softly after a lesson.
Denis was less of a perfectionist, happy with the mere opportunity to play his favourite instrument.
“They maybe missed one concert in thirteen years – people admired them,” said Chrapka.
“One of the things I used to do is get called into retirement homes to give workshops to the staff,” says Bailey. “I’m not sure how much time is spent learning to deal with the visually impaired in formal training.”
The number of people with vision loss is expected to increase from 2.5 to 4 per cent of the population by 2032 according to the CNIB.
Only 23 per cent of funds for rehabilitation and library services are provided by the government. The rest is donations from the public.
As the number of Canadians with vision loss grows, the lack of government support for programs to improve their quality of life will hurt blind seniors. Without rehabilitation and public advocacy, more of the blind, particularly seniors, face isolation.
“I think CNIB should be more of an advocacy group,” said Kovacs. “We need one strong advocacy group to represent us and investigate all the issues.”
Canadians experiencing vision loss are already dealing with huge life changes. Their perception of the environment, their social interactions and their communication tools are being turned upside down, according to research published in “On the Special Needs of Blind and Low Vision Seniors”.
Self-advocacy can be difficult.
Especially in a society still influenced by what the research refers to as the “folklore of blindness” – the image of the helpless blind beggar.
“It’s just gonna take time,” Denis says one afternoon. “The service is good, they just need to understand that I can do things myself.” His hands clasp brochures of alternate care facilities that will keep him in the city he calls home.
His face breaks into a smile when he mentions his last doctor’s visit. After nearly 30 years of darkness, Denis may have some of his sight surgically restored.
“I’m not going to get my hopes up,” he says with a sly grin. But the possibilities and freedoms that would once again be open to him are hard to ignore.
He hasn’t seen his own face, let alone his wife’s, for the majority of their marriage.
“I know what she looks like,” he says, and Diane giggles from the other side of the room. “I had sight when we met … I could see the colour of her clothes, the stars in the sky, the cars going by…”
For now, the pair remains without sight and without the freedom to wander outside alone. But the thoughts of restored vision and a more accessible place to live have visibly lifted Denis’ spirits.
“Will you take me to look at some of these homes?”