Louis Bernard's parents said their son was magnanimous as a child. Submitted photo
It's not often that an obituary is as frank and honest as the one that Andy Jones and Mary-Lynn Bernard penned when their son Louis died in February.
"Passed away by his own hand after a lengthy and brave battle with mental illness, Louis Elphage Wynn Jones Bernard, age 28 years."
Jones and Bernard, both well-known for decades of involvement in Newfoundland and Labrador's arts community, felt compelled to come forward and bring the discussion of mental illness and suicide out of the dark shadows. They told their story to Ted Blades, host of On The Go on CBC Radio in Newfoundland and Labrador.
"I guess it was just the truth. He did commit suicide ... and he did have a very long and difficult battle with mental illness, and he was very brave during it. We hoped that we could shed a little bit of light on the whole world of mental illness for the general public," Jones said.
"I didn't necessarily want to come on the radio and talk about this, but I don't care ... because who cares? I just think, is there something [that] can happen ... can everybody, this whole society, or everybody who is listening could say a) I've got to change my attitude toward mental illness and realize that everyone is family; and b) I've got to do something specific," he said.
"We've had so many people come up to us and thank us for putting that in the newspaper and saying how very brave we are — but we have to honour what he did, and why he did it."
Bernard remembers her son as a kind soul who spoke to everyone and always gave of his energies, despite his tremendous suffering.
'Always on the edge'
"He was a bit of a live wire. He was wonderful, [had] great energy. You know, he walked into the room and sort of took over. He was physically very active at a very young age. Great fun to be around," she said.
"I guess he was always on the edge, very extreme. It feels now, in retrospect, this edge he had was probably partially the seeds of his mental illness because he was quite extreme. He had a great sense of humour. He was very funny, and very physically funny. And it's interesting, that's one thing that he never lost ... even at the sickest time he was, in the last days of of his life," Jones said.
"When he was just a tiny guy, he got MVP at the [hockey] game. He skated across the ice and gave it [the award] to the kid who he thought really deserved it. That's the stuff he did ... grand gestures."
His parents noticed a change when Louis turned 12, and began to get into trouble at school.
"Because he was so extreme, because he had obsessive-compulsive disorder (OCD) — and a lot of it is still a mystery to us still, and a mystery to the medical profession as far as I can see — he would never bring anything to school that he needed," said Jones.
"I can remember begging him to take a pencil, holding a pencil in my hand and saying, 'Just take this pencil to school,' and he wouldn't do it. I constantly got things from school, 'He doesn't have anything.' They [school officials] would assume we were being neglectful. He would never want to go to school at a certain point. There were these major fights and arguments, a screaming match every morning and a wrestle to get him in the car to go to school," he said.
Louis was finally diagnosed with Pure O, a form of OCD. His father said the intrusive thoughts were the "pain of his life."
"The compassion just isn't there for these people who are really sick. Wonderful people in the system who work with the mentally ill, they're very good, and kind, but there's not that same compassion," said Bernard. "If someone breaks their leg, and they're at home and you're coming in to see them, you wash their dishes, you clean their house, you help them. There's someone in a bed very sick who can't get on with his life because of a mental illness."
"If you have a non-compliant patient, who is non-compliant because of his mental illness, they don't get the kind of help that everybody needs," said Jones.
"If you know someone who goes into the hospital because of a mental illness, do you send them flowers, do you send them chocolates? Not likely. But you do when you hear of almost every other kind of illness."
Jones and Bernard said their son's illness consumed more than half of his life.
Even during countless confrontations and sleepless nights, they said Louis "was still in there."
"I think he was always there. He was 100 per cent there, but there was a loud noise in the room. I think he did make the decision to take his own life quite rationally, in a way. I think he felt he could not go on for one more day with this condition. I think he stopped himself, because he knew it would have a bad effect on everybody," Jones said.
Out on his own
In the fall of 2005, Louis visited his aunt in Halifax and told his parents he wanted to stay there.
"We thought this was great. We said, we'll let him fly now. And so I went up and helped him get his own apartment. He did a couple of courses at NSCAD [Nova Scotia College of Art and Design] and was going to settle in. He got a couple of jobs at restaurants, washing dishes and so on — but he really didn't make it," Jones said.
"He could fake it with the family, in between, or if he was visiting. My brother in Dartmouth said Louis was in 'great shape,' he was funny, he was fine. Mark didn't see that things were falling apart in different jobs, with his apartment and who he was living with," Bernard said.
"We went to visit him during that period, and we could see he wasn't doing well ... but we kept hoping, hoping he would get it together, and that he would be OK, and on his own in the world, that's what we hoped for," said Jones.
"And so much so, I think we were almost fooling ourselves."
Louis came back at Christmas, just a few months after the move to Halifax. Jones describes it as "the end of Louis out in the world."
"He came home to stay with us, and he did nothing basically except be with us — and that is a good life, to be alive and to be with people who love you. My ideas of what life is, and what's important in life, has changed so much because of Louis. But then in the fall of 2006, he went into the Waterford [Hospital], and that was the beginning."
Bernard said 15 days before her son died, doctors changed one of his heavy medications for another.
"They did it sort of slowly. It took about three weeks to change from one to the other. One of those [medications] gave him some relief from his thoughts, he didn't have dreams, and it really knocked him out. That was one of the reasons they took him off it, because he was sleeping too much."
"Ten days before he died, Louis and I went to a movie, and we had a really good day. And [I thought], 'OK, this is another good change, something's going to happen here,' " she said.
"If we had any advice for the medical profession, it's that if someone is changing their medication, then they should go in hospital for a month while that's happening. That would be a recommendation. I feel, personally, Louis would have eventually committed suicide, I just don't think he could have lived unless there was some new [medication], Jones said.
Jones, who helped the Codco troupe to international fame, has often dealt with mental health issues in his comedy.
"There are so many inconsistencies and facets to all of this, the whole idea of the stigma of mental illness. So that's one of those things, we all have to do something about that. I know in Codco we did Marg at the Mental, Out of the Bin ... and so many things I wrote were unfortunately prescient of what Louis went through. In Faustus Bidgood, he definitely has hideous death fantasies," said Jones.
At the Waterford
"When I first went into the Waterford Hospital with Louis that first time in 2006, I thought, 'This is the most horrible place in the world.' By the time we left, I thought, 'this is one of the most wonderful places in the world,' " he said.
Jones credits the staff there with giving patients a sense of safety.
"I know people say the Waterford should be blown up and rebuilt, and maybe that is the case, I don't know. But there's a lot of good stuff that happens inside that hospital, and we experienced that. I think the word 'Waterford' should be stricken off the joke list and put on any other ward of the hospital."
Jones said Louis was very aware of the fact that he was loved.
"I'm sure he thanked me 50 times in the past few years, and said, 'Don't give up on me, Dad.' I think that's a very important thing, that people who are mentally ill are 100 per cent there and are able to take your love and give it back."
"Louis had a very complex and very difficult mental illness where he was tortured for many years. And we acknowledged and respected his decision, for what he did. But we in no way condone it — and we wanted to say that," Bernard said.
"What he did was a devastating thing for so many of us, but I just can't begin ever to feel sorry for myself. I just don't feel like that at all. He said he was 'being raped' by his own thoughts. He cried that night, that last night we were talking to him, and he said his thoughts were driving him crazy, and he couldn't get away from them. So you know, no matter how much pain we were in, it's nothing compared to what he put up with," said Jones.
"Society has got to say — it [mental health] has to catch up with the other medical disciplines to get enough money and moral support to get some positive research. Compared to people who do heart surgery, the mental health field is still in the 17th century."