A tick bite, the Powassan virus, and MaryAnn’s struggle

It was Labour Day 2021 when MaryAnn Harris told her husband she was feeling tired and needed to go upstairs to lie down.

Overnight she got encephalitis, a swelling of her brain. By the next morning, MarryAnn was in the ICU on life support, breathing with a ventilator.

“They didn’t know what was wrong,” said Charles, a popular author of fantasy novels, a three-time Aurora Award winner, and a member of Canada’s Science Fiction Writers Hall of Fame. “They assumed it was a virus of some sort. It looked like they had 70 little machines feeding her different kinds of antibiotics.”

Today, more than a year and a half after falling ill, MaryAnn hasn’t been back home. She still breathes with a ventilator and remains nearly paralyzed.

“We were never aware of the bite. We never even saw the tick,” Charles said. MaryAnn fell ill during the lockdown and the couple hadn’t travelled anywhere.

They figure she picked up the tick bite either in the yard of their Alta Vista area home or during one of their frequent walks around the community gardens in Pleasant Park. And it’s hardly the only question that can never be answered.

“If she was going to get sick,” Charles asks, “why did it have to be something so rare?”

Powassan virus was first identified in 1958 when it infected and killed a young boy in Powassan, Ont., on the outskirts of North Bay, 200 km northwest of Ottawa. Until 1998, there had been only 27 cases in all of North America. Since then, the numbers have been rising: 5-10 cases a year in the U.S. from 2010 to 2015; and 25-30 a year since. Since 2017, there have been 21 cases in Canada. Most infections occur in the northeastern U.S., Eastern Canada and the Great Lakes region.

The virus is usually transmitted by Ixodes scapularis, commonly known as the deer or black-legged tick, the same vector for Lyme disease. While it takes 24 to 48 hours for a tick to transfer the bacteria that causes Lyme disease to its human host, a person can be infected with Powassan virus in as little as 15 minutes after the tick attaches.

Powassan symptoms appear between one and five weeks later. In most cases, the person doesn’t even know they’re infected, passing it off as a mild flu. But for an unfortunate few, the sickness can be severe. About half develop encephalitis or meningitis, leading to lifelong neurological disorders.

MaryAnn’s symptoms were classic Powassan: fever, headaches, vomiting, weakness, tremors, seizures and paralysis.

The disease is fatal in 10-15 per cent of cases. There is no cure, nor is there an established treatment beyond normal recuperative therapy.

Still, Charles doesn’t dwell on the disease or how MaryAnn caught it. He’s focused on the road ahead.

MaryAnn’s recovery now depends on physiotherapy, but that’s been hampered by fluids that build up and constantly have to be suctioned out of her throat. Even before she got Powassan virus, she had immune problems and suffered from a build-up of fluids.

“It’s constantly in her throat and esophagus. She’s stuck on a ventilator and she’s constantly in need of being suctioned,” Charles said. “It’s an exhausting process so we’re not making a whole lot of headway with other stuff. We do exercises every day and she’s really good about it. Even when she’s exhausted she’ll still do it. But it’s just not going very fast because of these secretions.”

Charles’s novels, many of them set in the fantasy city of Newford, have a worldwide following. MaryAnn is his business manager, editor and illustrator. Her illness has left Charles with little time to write since he now spends five hours a day at Saint-Vincent Hospital, six days a week. He pays for a caregiver on the seventh.

Friends, family and fans have rallied around the couple. Musicians have visited the hospital to play for MaryAnn. A GoFundMe started to help pay for the many expenses they now face has topped $90,000. Fans have also subscribed to Charles’s Patreon account to help support his writing.

“There was nothing in Orem but apple orchards and Mormons. You couldn’t even buy a coffee,” she said.

“I read Charles’s books all the way through high school. It’s not an exaggeration to say that they were a lifeline for me. That theme of estrangement — of being an outsider.”

Bartel met Charles and MaryAnn at a literary conference in Salt Lake City two decades ago and the fan turned into a friend. She’s visited them in Ottawa and together they’ve taken road trips across the U.S., guitars and banjos strapped to the roof, Charles dutifully writing on desert mornings.

With MaryAnn in hospital, Bartel has pitched in to help proofread some of Charles’s writing. She’s collecting “sweet thoughts” that fans email for Charles to share with MaryAnn.

“It’s hard being friends and being so far away. I’m so grateful that I can give back in some way,” said Bartel. “At least she’s able to talk now.”

She describes MaryAnn as “a rock star” who faithfully does her exercises every day, determined to get better even if her progress has been glacially slow. She marvels at Charles’s dedication and devotion to MaryAnn’s care.

“They really are the most wonderful people. It’s an amazing love story.”

Meanwhile, MaryAnn bides her time in hospital. Charles manages her care, carefully protecting her from stresses that might trigger anxiety. Unable to move herself, she uses Siri to do what she can on her iPhone.

“As helpful as those items are, they aren’t as handy as one might think. MaryAnn can use Siri on her phone to listen to music or start an audiobook, for example, but she can’t necessarily make it stop: Siri can’t hear her when the music is playing.”

Through a friend, the couple was put in touch with another woman who contracted Powassan virus four years before MaryAnn and has mostly recovered. It’s a glimmer of hope.

“She’s not fully recovered, but she walks around and she’s able to garden. She’s an artist — like MaryAnn — so she can paint again. She can play her piano again, at least to some degree,” Charles said.

“Ultimately, our hopes are for a full recovery — to get her moving and get her back home. With Powassan, there’s so little known about it, it’s hard to know what’s going to happen.”