Doc battles demons, children’s health woes

Hey there, time traveller!
This article was published 08/07/2023 (873 days ago), so information in it may no longer be current.

Physician, poet and author Shane Neilson has a lot of saving to do, and it’s not just his children.

Neilson has bipolar disorder — as did his abusive, alcoholic father — and at age 27 attempted suicide by jumping off a balcony as his wife and daughter slept, only to fail and wind up in the emergency ward where he worked.

After spending six months in hospital, post-plummet as he calls it, he is too ill to finish his residency in emergency medicine in Halifax, and undertakes the role of caregiver to daughter Zee during her third year of life.

“Unable to work as a doctor or to take care of myself, I nevertheless was entrusted with the most important task of all: daily responsibility for my daughter,” he explains in his new book, Saving. Seeing to her needs and the joy she brought to life “really took care of me, kept me alive,” Neilson writes.

The family moved to Guelph so Janet, his wife, could study at the Ontario Veterinary College and because the city had a psychiatric hospital that specialized in treating physicians.

And Neilson was indeed a physician who needed help. He had a traumatic childhood of physical and psychological abuse from his father against himself and his mother. It was during that time that he conjured Burning Crown Jesus (BCJ), an idiosyncratic saviour that gave advice and watched over him well into adulthood.

Trying to keep an even keel and not succumb to suicidal thoughts was hard enough in an ordinary family situation, but when their son Kaz began having seizures at age two, it became more and more difficult.

Shane and Janet had to ensure one of them was with Kaz all the time as the seizures became more frequent and unpredictable. They took him to specialists, who said it would be a year before he could get an MRI, but that it “most likely is not a tumour.”

A few days later Kaz has 15 seizures in a day; Neilson takes him to the ER, where they’re told to wait, as it’s busy.

Neilson, a doctor, can’t make people listen, can’t get specialists to take his concerns seriously when he says there is more to his son’s medical problem. What chance would a civilian have?

And as Kaz worsens, older sister Zee is taken to a specialist after complaining of stomach aches. Tests come back negative, yet she continues to have serious abdominal pain. She stops getting invited to birthday parties, brings home uneaten lunches, stops reading in the evening and wants to sleep long before bedtime. “She lived in her room like a refugee,” her father writes.

She tells her parents: “I don’t want to be here anymore. I want to die.”

Attempts to get medical help for Zee are as frustrating as with Kaz. Throughout Neilson is contending with his own devils, and BCJ, as he fights the system to get help for his children.

Neilson’s tale is told in fairly short sections, jumping back and forth in time, and with many encounters with BCJ. It can be disconcerting at times, but it does put the reader in his position; dealing with real-world health concerns in a too-often indifferent system while struggling with his psychiatric problems is not a straight road. Once you accept the rhythm of Neilson’s telling, it is a hell of a story.

Kaz is finally diagnosed with a rare form of epilepsy, one that has caused some brain damage and kept him well behind others his age, and Zee is off to medical school in Toronto.

BCJ is cancelled and Neilson sees he’ll have to make it to the end on his own. Loving and caring for his family has to be enough to sustain him, he writes. Let’s hope so.

Chris Smith is a Winnipeg writer.