Full capacity SPARKLE

By Sarah Butland

Spring brings light into our lives like no other season. Flowers blossom, green returns to the earth, the sun shines bright and warm again and yet, this spring three Atlantic Canadian authors prove we do not need the seasons to change to shine; the sparkle and light come from within.

“Don’t wait for the ‘right time,’ as that right time may never come. You make now the ‘right time.’ You choose gratitude and live your happy right now,” says Angela Parker-Brown, author of Writing With My Eyes: Staying Alive While Dying. In her book, she urges people to “sparkle at full capacity.”

Parker-Brown writes with such grace that her determination and spirit sparkle even during her darkest times. Parker-Brown was living her busy life in Truro, N.S., as a mother of twin girls, with work, friends and family, when she took her troublesome right foot to the doctor in 2016.

“I’m sure he didn’t think this young beautiful Black woman sitting in front of him had ALS. Who would, for crying out loud?” she writes.

She takes readers on her journey as her body progressively loses its mobility, ultimately putting her in a situation where if she wanted to write her book, she’d have to do it with her eyes and a high-tech computer. She faces her own mortality, always looking for chances to sparkle. Her diagnosis is not her, but it increasingly shapes her life. Her physical woes highlight her mental strength and powerful spirit.

“When I picture myself (and everyone), I picture a person with a million little pinholes. Those pinholes are our happiness, our hope, our spirituality, every good thing about us, our love,” she writes. “Those pinholes radiate light. Those lights make us sparkle. Can you picture this? Aren’t we beautiful?”

Jen Powley was 37 when she first checked out a seniors’ home. It didn’t strike her as beautiful, but it was how the province of Nova Scotia was offering to help her live with multiple sclerosis.

“Though it is meant to be a home, it does not smell like a home — either in a good way or a bad way. Maybe it was the hour at which I arrived, but it smelled neither like freshly baked cookies nor like mouldy damp towels. It smelled like nothing except cleaning chemicals,” she writes.

In Making a Home: Assisted Living in the Community for Young Disabled People, Powley reveals the blueprint for how she challenged the government on that housing decision — and won. Through first-hand experiences and wellresearched evidence, Powley shares her story of slow progress that led to success.

Powley was diagnosed with multiple sclerosis as a teenager and now relies on personal assistants and a wheelchair to navigate the world in Halifax. Her voice is loud and clear on the page, though she confides that her physical voice is so soft now that her boyfriend must lean in and listen carefully before amplifying her message to others. In 2022, Nova Scotia announced it had heard her loud and clear, and 25 young adults living in nursing homes would be given a chance to live in the community.

Powley wrote her first book, Just Jen, as a celebration of her life with multiple sclerosis. Making a Home looks at the wider issues people face when living with a disability, including seeking fulfilment sexually and emotionally, as well as the need to pay assistants better to reflect the importance of their work.

A central point in her book is that being human goes well beyond being a body, and that maximizing autonomy and independence for people with disabilities should guide every other decision. She compares how different provinces support people with disabilities, and what they can learn from the new push for more thoughtful housing options for young people with disabilities.

“I think that able-body people need to understand that all types of people are part of the community. This means having people who are differently abled living in the same building as them,” she told Atlantic Books Today. “They need to understand people with disabilities as their equals. I don’t think I’ll live long enough to see equality.”

While Parker-Brown and Powley offer first-person accounts of life with a disability, author Marla Lesage explores the impact of parental disabilities on children. Her graphic novel AWOL takes place in Oromocto, N.B., and stars a young girl growing up in “armyville.” Her father returns from deployment with unstable moods driven by his post-traumatic stress disorder.

By showing the problems that come from ignoring your mental health, Lesage tells a beautiful story to young readers about the importance of transparency when dealing with disabilities that are not easily seen.

Lesage used a limited number of muted colours to reflect the sombre mood, but to keep a hopeful tone. Dandelions feature prominently.

“Dandelions have so many benefits. I’ve always loved them and I don’t really understand why some people go to such great efforts to remove all traces of them! I love the way a field looks when it’s dotted with yellow,” she told ABT.

“I think the dandelion is such a great representative of the military child. The mature flower is frequently picked by children to gift to loved ones. Who hasn’t enjoyed blowing the seeds from the mature flower? I especially like seeing images of those seeds floating through the air as a representation of the military child. Like those seeds, the military child finds themselves in new settings that aren’t always ideal, yet they find a way to grow and thrive.”

A central phrase in the story is “apc-oc-knomiyul,” which means “I will see you again” in Wolastoqey, as it captures the coming-and-going nature of a military childhood where “hello” and “goodbye” often don’t cut it.

“I’d decided very early on to set the story in Oromocto — a real life armyville — and had wanted to reflect the community, so it made sense to put a bit of both French and Wolastoqey in the story,” says Lesage, a registered nurse who lives in Fredericton.

Oromocto is home to Canadian Forces Base Gagetown and near the Wolastoqey community of Welamukotuk.

Parker-Brown, Powley and Lesage show people can “sparkle at full capacity,” no matter how the world tries to cover their lights.

Parker-Brown died in February, as this magazine was being edited. She spoke to ABT shortly before her death. She said, “Happiness is attainable at any stage of life. Why wait? Claim your happy!” ■

SARAH BUTLAND remembers her school days of announcing her aspirations of being a writer and the naysayers’ reaction, to which she replied “watch me.” Now, with this article in Atlantic Books Today, she only hopes they are. She lives in Pictou County, N.S., and previously spent many years exploring the streets of Moncton, N.B., collecting stories, memories and meeting interesting people. She’s the author of Losing It At 40 and Gaining It At 41