The day after they buried their younger son's ashes, Lesley and David Skelly sat in the sunny family room of their comfortable home in the affluent Leaside neighbourhood of Toronto and talked about the nightmare of schizophrenia. Mr. Skelly had just returned from delivering some of the many floral arrangements sent by friends and family to the hospital ward where their son Christopher (Kit), 23, had been hospitalized frequently over the last four years. Ms. Skelly arrived back from walking the dog, a black English cocker spaniel named Sena. Before retreating to her room, their teenaged daughter Robyn, who was on March break, explained that she was dreading discussing the suicide theme in Hamlet's soliloquy, "To Be or Not to Be," when classes resume next week.
The phone rang frequently, several friends and relatives dropped in to bring food and say hello, and Roxy, a grey cat with bright green eyes, sauntered through the room on an inspection tour before leaping up to the kitchen island for a snack. It was an ordinary late winter morning, except for the grief permeating the house like a vapour.
At the funeral the day before, eulogists had described the playful, slightly obsessive Kit, paid tribute to him as a musician, a friend and a spellbinding writer. A video showed him shinnying up a flagpole, splashing in pools, playing the piano, and grinning at the camera from gaggles of cousins on family holidays. His mother spoke of her "gentle and pensive" little boy who loved Game Boy, sang along to Freddie Mercury's Bohemian Rhapsody every time it came on the radio and read Enders Game by Orson Scott Card more than 20 times. But she also spoke of the voices that never stopped tormenting him and how the world the rest of us accept as real was a virtual matrix to him.
With a mixture of compassion, tough love and vigilance, the Skellys had hoped to keep Kit safe until he could "get some insight" into his schizophrenia, the severe mental illness which affects 1 per cent of the Canadian population. Diagnosed late in 2008, as a 19-year-old biology student at the University of Guelph, Kit Skelly often refused to take his brain-numbing medication. Prey to paranoia, delusions and serious anti-social behaviours, he was in and out of psychiatric wards and often living on the streets or in shelters. Last Saturday the torment overpowered him and he killed himself. Now, his parents are "on a mission" to pull the shroud off schizophrenia and destroy the stigma that afflicts people with the disease.
"I never thought he would do it," says Ms. Skelly. She speaks quickly and in detail, as though she is rewinding a video in her mind. Her husband is slight, a listener and a hugger rather than a talker, although he occasionally interjects to correct dates or amplify incidents.
She can't forget seeing their teenage son in four-point restraints in a hospital emergency ward after his first psychotic break. The diagnosis was like "being hit over the head with a baseball bat." In her shock she equated schizophrenia with dissociative identity disorder. "I thought he was like Sybil [the psychiatric patient with multiple personalities whose treatment was the subject of a bestselling book in the 1970s]."
That's when the couple began educating themselves and speaking publicly about schizophrenia. Quoting the research that schizophrenics generally get better as they age, Ms. Skelly says of her son: "His brain was still developing. We thought that maybe when he got older he would become compliant" and take his medication like other more mature schizophrenics they have come to know.
Kit had more tricks than a wizard when it came to concealing his pills or vomiting them up after swallowing them. "How can you expect somebody with a brain disease who can't tell the difference between fantasy and reality to take his drugs, especially when they make you feel like shit?" his mother asks. In January, 2010, on psychiatric advice, they called the police to remove him from their home. He was extremely disruptive and consuming so much psychic and emotional space that the rest of the family, especially their daughter, was suffering. His parents paid for a phone so they could be in touch and regularly met him for lunch – he rarely lost his appetite. "It's hard to sit there with a kid who doesn't think you are real," says his mother. Even the food wasn't real to him sometimes.
After more hospitalizations and more time on the streets, he moved in January, 2012, into the basement of the house his older brother Adam, 25, had rented in another part of the neighbourhood. About the same time, he was put on a slow-release injectable drug. "He was getting better this past year so we began to hope again," according to his mother.
His parents began planning a "retirement" project. Mr. Skelly put his plumbing business up for sale – the deal closed this week – so that they could spend the next five years investigating treatment programs in other countries. They promised themselves that "if Kit isn't showing signs of improvement by the time he is 30, then we can say we have done everything we can."
That dream was shattered a week ago today when Kit left his brother's house and walked a couple of blocks to the Leaside Bridge over the Don Valley and jumped. The news was delivered by a police team at their front door. "Apparently, I screamed and cried and fell on the floor," says Ms. Skelly. Robyn came running, and then police contacted Mr. Skelly and Adam. After the tsunami of shock subsided, the police took the Skellys downtown to the coroner's office to identify their son's body. In a horrific irony, the driver went the wrong way and drove them over the very bridge from which he had leaped a few hours earlier.
How do they put their lives back together? "Therapy," Mr. Skelly says bluntly. "When it is really hard it is breath by breath, and when you can see some light it is day by day."
Ms. Skelly thinks for a moment and then says: "The diagnosis was a bigger shock. I didn't feel this week as though I had been hit with a baseball bat." That's because people came rushing with open arms as soon as they heard of the Skellys' loss.
"I have a freezer full of lasagna, now that Kit is dead," says Ms. Skelly. But where, she asks rhetorically, were the casseroles or the flowers or the visitors when he was in the psychiatric ward, or living on the streets or being taken away from their home in handcuffs in the back of a police car?
1. Don't keep schizophrenia a secret. That only compounds the stigma.
At her son's funeral, Lesley Skelly pleaded: "Help us get our society to accept people with these devastating mental illnesses. … Don't be afraid of visiting someone in the psych ward. "
2. Hospitals and psychiatric organizations should co-ordinate care and support families.
"You are in a lather," David Skelly says about when you first hear the diagnosis. "You'd think there would be a response team that could come to you after that first episode," so you wouldn't have to go searching for help. Their son was assigned a psychiatrist at the hospital where he was first treated for what his parents thought was anxiety. They have nothing but praise for that psychiatrist, but continuing with him meant they couldn't easily avail themselves of programs and services at other facilities.
3. Accept that delusions are reality to a schizophrenic.
"We thought we could convince him that his delusions were fake," says Mr. Skelly, "and this led to hours and hours of arguments to the point of screaming." After two years, they learned to "go with him" and empathize with the fear the voices and visions generated, saying, for example, that it must be "tough" to see a pterodactyl flying towards the window. "Never validate the delusion," adds Ms. Skelly, "but validate the emotions."
4. Privacy protections are too stringent.
Kit Skelly didn't attend any classes in second-year university, but nobody told his parents because, at 19, he was technically an adult. So they missed a warning sign that he was slipping into psychosis. The same privacy guarantees applied to shelter managers, so they often couldn't find out if their son was "alive or dead." The Skellys learned to beg and manipulate officials into giving them information.
5. Reach out if you know or hear about somebody who has a family member diagnosed with schizophrenia.
"Schizophrenia is everywhere," Ms. Skelly says. "People need your support."