Battle with ALS brought overwhelming struggle for supports

Sathya Kovac, 44, chose medical assistance in dying

By: Janine LeGal

Sathya Dhara Kovac knew when she was going to die.

She knew the date, time and place, and who’d be around her. She had meaningful items meticulously placed nearby and had chosen the spot from which she’d gaze out of her sun room window as she took her last breath.

She made a lot of decisions about those final moments and ultimately chose medical assistance in dying (MAID). Kovac died Oct. 3, at age 44.

But Kovac didn’t choose the struggles and challenges she encountered with accessing the care she needed to live in her home. Diagnosed with amyotrophic lateral sclerosis in 2006 — the same disease that took her mother, grandmother and uncle — Kovac had over the last few years experienced one obstacle after another. She’d grown tired of asking for health-care services so she could do basic things.

“I needed someone to help me get up in the morning, to get to bed, go to the washroom, wash up, make breakfast, clean up,” Kovac wrote in the notes she left behind in hopes they would inspire change so others wouldn’t have to struggle.

“But no one wanted these short shifts, really, when they can get eight-hour shifts elsewhere for better pay. A big problem is finding people willing to come over for only an hour or so and then come back two or three hours later. Ultimately, it was not a genetic disease that took me out, it was a system.”

Kovac grew up in Transcona, and earned a bachelor of arts from the University of Winnipeg. She enjoyed her work in a daycare until her illness made it too difficult to keep up with the physical demands of the job.

She studied Reiki, loved photo-editing, adored her dog Shanti, was an avid reader who appreciated healthy plant-based food, and loved drinking tea in her backyard.

She was central to the Chalk for Peace movement in the city, creating colourful messages of love and joy for passersby. During the last few years, Kovac had also been actively involved in online community groups, helping connect people with resources in Riverview, the cherished neighbourhood she called home.

Caregiver and friend Shayla Brantnall spent the last year-and-a-half looking after Kovac, and came to know her as a hilarious, loving, resilient woman, with a do no harm but take no guff attitude.

“I appreciated her willingness to find light and love in everything, even at the really dark times,” Brantnall says. “She was also a great listener and great at giving advice.

“Sathya was always vocal about the rights of disabled people and how the world was not made for disabled people. The systems that are supposed to support our most vulnerable are so flawed and severely underfunded. She was not the first person to resort to ending her life due to lack of support and she won’t be the last, if nothing changes.

“I really hope the government takes a serious look at things. Everyone deserves to live a quality life,” Brantnall says.

“Her impact on me as a person was so incredibly profound. Being able to provide love and support to someone who really needs it was such an honour… I will forever miss her.”

Kovac worried about the lack of supports and services promoting quality of life and independence for those who are not healthy and able-bodied.

“Look to unhealthy societal structures and government,” she wrote. “There is desperate need for change. That is the sickness that causes so much suffering. Vulnerable people need help to survive. I could have had more time if I had more help.

“I get kind of mad when people think this is a decision and that it has everything to do with my body and decline. That’s not really it for me. I don’t feel like I have choices. I could be around a long time and I could be happy. Yeah, my body isn’t working great but that’s not a huge problem for me. I don’t have enough help and that is the reason, period,” Kovac wrote.

“Life doesn’t end with less physical ability. It ends with less support.”

Garth Johnston, a longtime friend, says: “Sometimes, you could really feel her struggle with assistants. Some people weren’t reliable and that would really screw her up. I know COVID made things difficult for her, and trying to find someone who was willing to work for basically less than minimum wage.”

Johnston would do odd jobs in Kovac’s home when needed. He will remember her quirky sense of humour.

“She always looked for the truth, and no matter the repercussions, she always spoke the truth,” he adds.

“She was non-judgmental, caring, considerate. She loved to give gifts… I actually just had a delivery the other day from her. She had warned me about getting gifts from the grave… Before she left, she gifted me with a very nice telescope. It was her ‘deathsgiving present,’ as she put it. I’m a huge space nerd and I got her interested in it as well.

“It was very thoughtful. Our last conversation, I told her I’d be watching for her through my telescope, to shine bright.”

The impact of Kovac’s life, and her death, has been felt far and wide, with many concerned about others rushing to sign on with MAID when advocacy for better services seems futile.

Kovac will be remembered for sharing her story. She wanted to help people.

She wanted the world to be kinder, signing off her obituary with: “Do something nice.”

passages@freepress.mb.ca