There are days, and this is one of them, that Melanie Gaunt is in so much pain she loses her train of thought.
In her small, cluttered room at Northwood’s long-term-care facility in Bedford, the petite 46-year-old regularly repositions herself in her wheelchair, levering herself around on the armrests.
“MS goes down the side, right?” said Gaunt, who was diagnosed with multiple sclerosis three days after her 31st birthday in November 2002.
“You have a good side and evil side. My evil side is my left side so my pain is mostly in my hand and my wrist and my arm. Sometimes my shoulder. I’m having a lot more pain than I would normally and it’s very hard for me to concentrate on basically everything.”
Gaunt alternates between suppressing tears and cracking jokes when describing the suffering and isolation that comes with her disease, in which a person’s immune system attacks the central nervous system.
“I’ve spent the last couple of months basically in bed. Watching Netflix, I’ve gone through the English speaking movies — now it’s subtitles.”
While she sometimes struggles to find her words, Gaunt tells her story in frank and articulate terms. That’s not such a surprise given that she has a master’s degree in organizational communications — in fact, she was diagnosed with MS as a graduate student in North Carolina.
She returned to her native Halifax in 2006 to live with her mother (“She said of course I’ll be the one to take care of you. I’m your mother.”) But Gaunt’s condition worsened to the point where she needed
professional care and she’s lived at Northwood since 2010.
She’s one of 151 Nova Scotians with MS who live in long-termcare facilities, according to a Statistics Canada report released last week.
Nova Scotia has one of the highest rates of MS in the world, about 330 cases per 100,000 people.
“With MS . . . . it strikes you in your prime,” said Ben Davis, president of the the MS Society of Canada’s Atlantic Division. “You can be 40 years old in a longterm- care facility surrounded by people who are not your age and stage. That is absolutely a challenge across the country and we advocate for better long-term care and more home support for people with MS.”
Living in a long-term-care facility usually means being with people who have dementia and that can create uncomfortable situations.
Gaunt recounted being woken up by a resident, a former minister, who had come into her room when she was napping one afternoon. (Residents can lock their door from the inside but she had forgotten to do so that day.) “He’s getting to a point where his vision is going so he came up to me (she puts her face very close to the reporter’s) like that and . . .
I woke up. It was terrifying so I’m reacting but he has no clue what he’s doing, so I can get as mad as I want but it doesn’t do a load of good.”
Gaunt doesn’t downplay the challenges but she also points out the relationships she’s built at Northwood — particularly with the five or so people in the 155-bed residence who have MS.
An animal lover, she made the most of a brief visit on the day of the interview from a pet therapy dog, Max, a tiny and lovable Yorkie.
She also successfully lobbied for a residence feline, a large Norwegian Forest cat, whose unannounced visits she enjoys.
In fact, Gaunt has made it her mission to improve her quality of life and that of others with physical disabilities who live in longterm- care facilities. She’s a cofounder of a group called Independence Now NS. The group advocates for improvements in housing, transit and other issues crucial to the lives of the physically disabled.
For Gaunt, living with MS is akin to that family member you love but can make your life hell sometimes.
“I love my MS — I have to embrace it. . . . Sure, yeah, it has taken a lot of opportunities that I wanted or I could have had. But it’s given me wonderful opportunities and wonderful friendships and relationships.”