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Andy and Mary-Lynn on starting a new conversation

Their obituary for son Louis has broken a barrier and started a whole new conversation about suicide and mental illness.

But that wasn’t their original intent, when Andy Jones and Mary-Lynn wrote that Louis had “passed away by his own hand.” The wave of media coverage, water cooler talk and blogs like this one were not in the plan at all.

“I think we did it for a reason other than (breaking down barriers),” Andy said, in an interview at their cozy home on Gower Street. “We both felt that Louis had suffered so much that we didn’t want to suddenly pretend that it had never happened. In a sense, we wanted to draw attention to that.”

“Also, we were quite amazed that he had taken things into his own hands in such a very strong and final kind of a way,” Mary-Lynn said. “And we did want to honour that… along with the suffering that he had gone through.”

Prior to Louis’s passing, Andy and Mary-Lynn had to respect his privacy and needed to be somewhat guarded when talking about his condition.

“I could never explain to people how much Louis was suffering while he was still alive. Sometimes I just avoided it, like while I was at the supermarket or something and someone would ask ‘how’s Louis’? Eventually I couldn’t just say ‘he’s troubled’ or ‘he’s finding himself.’ If they pushed me long enough and I just couldn’t get out of the supermarket, eventually I would say ‘Louis has a very serious, debilitating mental illness that is stopping him from going out his front door.’ That’s basically as far as I could get. But then, when he committed suicide, people said ‘on my god, he really was suffering, wasn’t he?’”

“It was very early days after the obit came out that we started getting really strong reactions from people thanking us for that obituary,” Mary-Lynn added. “And there was that line ‘You’re so courageous to say that,’ but courage was never something we thought about when we said it. We saw it as telling the truth and in some way we thought we have to do this for Louis – we have to say it the way it is.”

Andy and Mary-Lynn’s desire to talk openly about Louis’s condition was reinforced last week when the couple visited a support group for parents of children with obsessive compulsive disorder.

“These parents were saying that it’s hard for you to talk about your children sometimes but the sad fact is, Louis is dead and in a sense we are now free to say things we couldn’t before (while he was alive) because it was his story to tell at that time,” Andy said. “They were encouraging us to carry on because… they can’t talk. Their children are still alive. They don’t want their parents saying anything to anybody.”

“They can’t get on the news to talk about it,” Mary-Lynn said. “The stigma is alive and well.”

I asked the couple if they’ve seen some good coming from the discussion that was prompted by their death notice.

“We’ve had, I would say, maybe 10 people who have responded to us and said that there was suicide in their family and that it was hidden. In one case, the person said that person was never talked about again; that someone was in her seventies before it was admitted that her father had committed suicide. So many people said that they were able to discuss it now because we had said that. So it’s a very good thing to tell the truth in that particular case.”

So in cases of suicide, should people go ahead and acknowledge cause of death in the obituary?

“Yes, but it’s a personal thing,” Andy said. “And if they don’t, I understand that too. There is that official fear that’s been laid on the table that people may have committed suicide because they heard someone else did it, the copycat thing. Whether that’s true or not, I don’t know. There is research that supports it, and others who dispute that research. I tend to side with the latter. There is an excellent essay by Maria Bradshaw that I recommend to anyone interested in the subject.”

Andy noted that much good can come from the disclosure of suicide and this must be weighed against negative outcomes, whether real or perceived.

“I guess you have to weigh the risk of copycat behaviour against the potential for good, such as people realizing how much people with mental illness suffer, and that they are not the cause of their own disease. That attitude is in many people… that feeling that the clients are in the way, an unnecessary difficulty in this world. There is a lack of respect in the mental health world and the world in general for people who have mental illness, and that is getting in the way of people getting better or getting properly treated during their lifetime.”

This point was driven home during last week’s meeting with parents of children with OCD, Andy added.

“If you could heard all their experiences – it’s every story in the whole world of mental illness. They have some version of that. And they had problems and difficulties that we didn’t have. It’s the luck of the draw sometimes. If you get the right psychiatrist, or the right ward at the hospital, you’re luckier than others who didn’t. Some of the things they went through are just so shocking. One parent said it feels like someday this will all come out the same way it all came out with Mount Cashel… because it’s being suppressed.”

Mary-Lynn added: “We did speak quite glowingly (in the On the Go interview) about the Waterford because we did see Louis get better in there, and we did have some wonderful caregivers and nurses as well, as many of those in the group did, too. But they also had many not-so-great and sometimes horrible experiences in the Waterford and in different psychiatric situations with doctors who just weren’t seeing what was wrong with the child.”

“A psychiatrist told Louis that there was nothing wrong with him, that he was doing this to upset his parents,” Andy said. “This was five days before he went in for an almost two month stint for the first time in his life at the Waterford.”

Andy made it clear that he is not an expert on the topic of suicide or mental illness.

“Someone asked us to speak at a conference about suicide but I said ‘I can’t do that.’ I’ve never spent any amount of time studying suicide. I’ve only got one story to tell. But I can tell that with a bunch of other people telling similar stories.”

“But the story that we can tell,” Mary-Lynn added, “that is a good thing to tell, is how just saying it aloud in the newspaper and having it out there – that he took his life by his own hand – has been in some way a release for people. People needed to hear it. The minister and the funeral director thanked us profusely for it. I had no idea that we were breaking a taboo… Maybe there’s been research done that we don’t know about and we’re not saying that we have any answers for anybody. But we just know what happened to us, why we did what we did, and what the response has been from other people who have had suicides in their family. I’ve heard people say that we shouldn’t say how people died it because it may give people ideas, and I don’t know if that’s accurate either. But I think it has to be talked about and brought out into the open and acknowledged that suicide is alive and well.”

“We’re only reacting to other people’s questions,” Andy said. “We haven’t figured anything out really. We’re still in great confusion in our own lives.”

Did they find the interview experience exhausting or cathartic… or both?

“I thought it was cathartic at first,” Mary-Lynn said. “We were really busy and in shock back then… On the Go was our first interview and we just went in wanting to answer the questions as truthfully as we can. Which is all you can do. And then when we came out of there we were very emotional – even though we felt great doing it – because he asked us some very tough questions. We felt like we were all over the map. But the story is all over the map. It’s a messy kind of story.”

Andy added: “I don’t know much about the grieving process though I’ve been reading about it, but we’ve been having a much harder time in the last couple of weeks than we had at first. At the beginning you’re dealing with everyone else’s grief too. So you have all your relatives and cousins and brothers and sisters, and in a way you’ve got to reassure them in a kind of a way, at least partly. And there’s all the funeral stuff. We’re still doing stuff now to straighten out Louis’s affairs. And there is just that feeling that you can’t believe it still. We both feel the same these last few weeks…

“And by now, we would have liked to stop doing interviews, in a way, but all our friends from the OCD parents support group were encouraging us to continue because they can’t speak about their children. So we said ‘okay we will carry on doing this.’”

This is the conclusion – for now, at least – of this series on suicide and mental illness. However, many families have experienced crises of their own with mental illness. Everyone has a story to tell. I have attempted to keep the conversation going by creating the #NoMoreStigma hashtag and posting the following status on social media:

Has your family been afflicted by mental illness? Please share your stories. Let’s end the stigma. #NoMoreStigma

To get the ball rolling, I then posted about my own family’s experience (my father, Ken, wrestled with clinical depression for 10 years).

Andy and Mary-Lynn’s story – and that of Riley Anderson-Fowlow, who died tragically in 2012 – have inspired a benefit concert for Saturday, April 26 at Gower Street United Church Lecture Hall. Performers will include Joel Thomas Hynes, Dave Sullivan, Liz Solo, Sherry Ryan, Dale Drew, Calvin Powell, Kat McLevey and Eastern Owl Drum Group. As well, Andy Jones will read from his forthcoming book, “Jack, The King of Ashes”. The benefit is raising seed funds to create community-based educational scholarships in Louis and Riley's memory. Tickets are $25 each and must be purchased in advance by calling 576-0541.

After our interview and some follow-up questions via email, Andy sent a message that further encapsulated what he and Mary-Lynn are trying to achieve. It is fitting then, that we close out this series with Andy’s own words:

“We are just trying to make sure we are not making categorical statements; the more research we do the more we see how absolutely complex all these situations are. Our consistent message is that we have got to ‘normalize’ mental illness, that we have got to get together to find cures while treating people with respect and empathy, giving them the best life possible with as much support as possible – just like we do for people who have, say, multiple sclerosis.

Imagine a world in which mental illness was treated the same as MS! As soon as the first sign was detected the whole family would be alerted and everyone would be expected to help out as much as possible. The medical professionals would be trained to be sympathetic – there would never be a hint that the patient was responsible for their illness, that they were ‘slackers’ or a nuisance. Aware that the disease has a whole lot of manifestations and levels of seriousness, plans would be put in place for home-care workers, housing and, in the most serious cases, complete financial support.

Of course, the truth is that things are probably not that good for people with MS, but there’s no one who’d think they don’t deserve it; no one who’d think that every effort should not be made on their behalf. We don’t seem to feel that way about those who are stricken with mental illness. Surely that attitude gets in the way of their recovery, their quality of life, and the quality of life of their family and friends.

We are not condemning the mental  health system – like any other human endeavor, it has its competent and less competent practitioners, its selfless tireless workers and those less engaged. The point we keep hoping to make is that the whole society has to undergo a sea change, a deep alteration in attitude. Hopefully, the results will be proper resources, money, moral support and goodwill given to the appropriate institutions and individuals to move forward in looking for cures and pain management, as well as social and financial support for people with mental illness.

Finally, we have met so many wonderful, supportive, kind and generous people on every level at the Waterford, the Health Sciences Centre, the ACTT team, Stella’s Circle, Choices for Youth, CONA Campus School at the Waterford, youth services social workers, Aspens and Oaks, our GP's office, the Early Psychosis Unit, some psychiatrists' offices, and others.

But there is still room for improvement. It’s time that mental health care, research and knowledge caught up with the rest of our medical system.

It has a long way to go.”

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