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On a September evening almost nine years ago, Susan and Jay Bigelow called 911, then sat down to dinner in their Toronto home, waiting for the police to come and take away the stranger at the dining-room table who was once their son.
For 19 years, they had raised a cheerful, outgoing boy named Jesse Bigelow, who had lots of friends, was chased by girls and sang in a rock band called, in an odd foreshadowing, Mental Distortion. Jay had coached his hockey teams and travelled with him to soccer tournaments. Jesse wasn't the perfect kid: He threw more tantrums than his older sister, Melissa, had. His marks were mediocre. And his parents knew that he smoked pot with his friends. But he was a typical, loud, athletic boy and, even as a teenager, he welcomed a hug from his mom.
Then, slowly, helplessly, they watched Jesse Bigelow vanish, as surely as if he had been kidnapped. They didn't recognize the shaggy, bearded intruder who now lay like a zombie in the bedroom upstairs and ranted at them about God.
In less than a year, it had come to this a police car in their driveway, the fear of a struggle. They weren't without resources. Jay is a successful architect and Susan, a lawyer, knew her way around the system. They were friends with several psychologists who offered help. Even then, it had taken one appointment after another and many hours at night composing an affidavit to get this far.
Now, sitting at the table, they worried whether their son would ever forgive them for making the call. When they watched the police snap handcuffs on his wrists and guide his head into the back of the cruiser, they had no idea whether they had saved him or condemned him.
What follows is told in their own words, reconstructed from interviews held on several occasions with different family members. It is the story of the beginning and of the end: How schizophrenia stole Jesse Bigelow away and how he managed, with luck and love, to find his way home again.
Jay The first thing you notice is that, all of a sudden, he is not associating with his friends as regularly as he had been. He became very withdrawn. And he was not having as much social contact.
Susan He was a little more volatile than usual, a little more angry sometimes.
Jesse I went from being very sociable to being weird and more reserved. And very moody. I became paranoid. If there was a group of people in the schoolyard talking and laughing, I started to believe they were laughing at me.
Susan Then one day, he came home and told me that he thought people on the subway had been talking about him.
Jay The first suspicion, of course, is that he's doing drugs. … But there were various incidents that seemed to be more than just someone who'd been doing drugs the night before. We went out to a Japanese restaurant with my in-laws and the whole family, and we were ordering our meal, and he just couldn't make up his mind. Literally, for 20 minutes, it was clear that he was really, really struggling just to comprehend the menu. That's a small thing, but it really stood out.
The Bigelows tried immediately to get help for Jesse when he began acting oddly in the fall of 1998. They were referred to a psychiatrist who told them that it was a drug problem. They knew he was wrong. They went to another doctor, bringing Jesse under the guise that the entire family needed counselling. Jesse wouldn't keep his appointments. As far as he was concerned, there was nothing wrong with him.
Jesse I was becoming less and less in touch with reality, and more and more in my own world. I grew my hair long and grew a long beard. I would lie on the couch for long periods of time and I would walk very slowly, and I wouldn't respond to people.
Susan His hygiene went totally down the tubes. He wasn't taking care of himself at all. He had several part-time jobs, but they lasted a day because as soon as he worked, they realized he couldn't function. He would go off wandering by himself all the time. For hours and hours and hours on end. I remember one day he came home he'd wandered around all night and he told us he'd been walking on the railroad tracks.
Jay It got to the point where there was really only one of his friends that would even talk to him. They all just deserted him pretty much.
Jesse It's kind of blocked in my memory. I look back and say, "Oh, that's why no one was around."
Susan They didn't want to be out in public with him because he was acting so bizarre. But, hey, they were young guys too. I can't really blame them. I didn't like being out with him in public, to be perfectly honest.
Jay I guess that's one of the things with serious mental illness. When you develop some other physical illness, like cancer or something, your friends will rally around you, send you get-well cards. When you develop a serious mental illness, they just disappear.
Susan The year 2000 was coming up, so his story was always, "Don't worry, I am just going through a bad patch everything will change in the millennium." That was his standard line.
Jesse is a textbook case. Schizophrenia usually strikes teenagers or people in their 20s, often without warning.
Roughly one in 100 people, across every race and culture, are diagnosed with the disease. Scientists aren't sure what causes it; as with most mental illnesses, inherited genes are believed to play a role, but in many cases of schizophrenia, like Jesse's, there is no known family history.
Jay admits that if he had been asked about schizophrenia before his son was diagnosed, he might have said it had something to do with split personalities, a false perception perpetuated in movies such as Jim Carrey's Me, Myself and Irene.
In fact, schizophrenia is defined as a "break with reality," and symptoms often progress as Jesse's did withdrawal from friends and family, then confusion, followed by delusions.
For several months, Jesse's parents hoped that it really was just "a bad patch." Melissa, occupied with university and spending most nights at her boyfriend's place, thought he was being deliberately "obnoxious." But by the late spring of 1999, Jesse was clearly psychotic.
It was devastating: Jay had always been close to Jesse, but now his son refused to speak to him and began to refer to his father as the Devil. The family, who'd never attended church, couldn't make sense of this newly found religious fervour. "It was very scary," his mother says, as Jesse's delusions intensified.
Jesse I started hearing voices. I would hear my own voice in my head as my regular thoughts, but then I had additional voices. On my left side, I heard a very disruptive commanding male voice that I thought was the Devil. On the right side, I would hear a very soothing, calming female voice that I thought was the Virgin Mary.
When I was watching TV, particularly the news, I would watch the journalist and it was if I could hear his thoughts in my mind, and I believed it was the Devil.
I started fixating on people's hands: I believed that the left hand represented the Devil and the right hand represented God. So I got this notion that when people were doing work with their hands, if they finished with their left hand, they were doing work for the Devil; if they finished on their right hand, they were doing work for God.
I would see a couple of crows in the trees in my backyard and I would believe they were the Devil's birds watching me.
Susan For a while, his pattern was that he would get up, have something to eat and then he would go off to the park. Sometimes he would run and other times, I don't know what he was doing, just lying around. … He would tell me about a fox he saw in the park who was talking to him.
Jay He became very obsessed with cleansing himself. He would drink gallons and gallons of water.
He would go out jogging for an hour and a half, and then he'd come back and hose himself down with all his clothes on. And then he'd strip down in his shorts and climb up in a tree and sit up there for hours in the backyard.
Jesse I would come home and hose myself off because it was hot.
Susan But with all your clothes on? And dripping through the house, with his running shoes, squish, squish.
Jesse I don't think that's weird.
Susan And then one day, he decided he was going to make crab-apple jelly. We have a crab-apple tree out front. I wasn't that keen on the idea. But I said, "Okay, well, fine, I'll tell you what to do." So he got all these crab apples, and then he went out to the kitchen, and he mashed crab apples. But he kept mashing them, for, like, two hours, until his knuckles were bleeding from hitting the pot. We never did get the crab-apple jelly, obviously.
Jay There'd be times when he'd go to his room and spend hours and hours on end lying in bed, doing nothing but basically staring at the ceiling. And every hour or so, you might hear maniacal laughter, or sometimes you'd hear talking. Of course, what he was really doing was interacting with the voices.
Jesse The voices are fairly random. … Originally I talked back. I fought back. Sometimes the voice would be evil or disgusting. I disagreed with the voice, sometimes in my own mind, sometimes out loud.
Susan He started to look like a biblical prophet. I had heard him a couple of times, on the street, start to preach, going on about, "Find God, or you're going to be damned." He came home and told me that he had been doing that on Yonge Street and the cops stopped him and fortunately just told him to move along.
Jesse I did a lot of walking up and down Yonge Street, preaching at the top of my lungs, saying, "Join the rich businessmen and wankers, or join Jesus and the people."
Jay At one point, when his delusional behaviour became very bad, he thought he was Jesus. So he certainly wasn't contemplating suicide. He thought he was the Saviour.
Jesse I was working at the Dominion on the graveyard shift stocking shelves, and as I was putting cans up on the shelf, I believed that I was blessing them. Then I thought, "Well, I can't bless all of them," so if I touched a can a second time I was un-blessing it.
But I really, really believed I was Jesus Christ at that time. Now I look back, no human being can be Jesus Christ. That's impossible.
Susan By summer, he was "clanging" it's a speech pattern which is total gibberish, rhyming gibberish essentially.
Jesse I though I was speaking Gaelic. I thought I had learned Gaelic through my communications with God.
Susan He sure hadn't.
Jay You attempt to try to talk to him in a rational way. But it's difficult.
It's not a good analogy, but it's a bit like trying to convince a drunk to do something. He's just not prepared to listen to reason.
Susan He could get pretty wired. I would never agree with his delusions [but] I would never say, "That's absolutely wrong." Because then he'd get pretty upset.
Jay One thing I noticed in his eyes when he looked at you in a very intense way, his pupils would get quite dilated. A lot of people who are confronted by someone who is looking this way will see it as threatening because it is very intense. He'd stare right at you, right in your eyes. Most people don't do that. … It's just his way of trying to focus on what's being said.
Jesse I didn't think this about my parents, but I believed that if I looked somebody intensely in their eyes as I was passing them on the street, I could blow up their brains.
Jay He became more and more alienated from me specifically. There was a period he wouldn't even speak to me at all. … It wasn't pleasant, but I didn't really take it personally. I knew it wasn't him it was the illness.
Jesse If I was with my parents, my dad would always be the Devil and my mom would be God. So I would only talk to my mom. ... If I woke up at night and I would look at my dad sleeping and his mouth was moving, I thought it was the Devil reciting Satanic verses through his mouth.
Jay As he became more and more ill, his behaviour became quite aggressive. Not so much in a physical way, but verbally aggressive. … He would never actually strike anybody.
There was a period of time when I would hide the big knives in the house and put something in front of our bedroom door. Because he was just acting so erratically. … He'd decided to "purify" himself I thought he might try and purify us as well.
Susan I never particularly felt threatened although occasionally he was scary just because of how delusional he was. Jay was in a different position than me because Jesse was overtly angry at him. And we also talked about putting a lock on our bedroom door because Jesse would occasionally get up wandering in the night.
Jay Now that didn't last very long. That was really at the end just before he was committed.
Jesse has never heard this part of the story before.
Jesse I didn't know you were that worried. And why specifically knives anyway?
Jay Well, because what other weapons are there around here? I wasn't worried about you hitting me with a pillow.
Jesse You were worried I was going to stab you guys or something?
Jay Well, we didn't know. And, at times, you were so angry. Who knew if that anger was going to manifest itself and in the middle of the night, you'd wake up suddenly and say, "These people sleeping in the next room don't go to church. I am going to go and kill them." Who knew?
Jesse I wish I knew: I could have reassured you that I wasn't thinking that.
Jay Are you kidding? If we had told you we were worried about that, we might have put the idea in your head. … I want to say something to Jesse: The fact that we were hiding the knives, don't take it personally. We were hiding them because at the time you were ill and irrational.
Jesse All is forgiven, I hope, both ways.
Jay Of course.
That spring, Susan took a leave of absence from work because someone needed to be home with Jesse. She later quit altogether.
Both parents stopped travelling, because they were afraid to leave him. At his grandparents' 50th wedding anniversary, Jesse sat on the couch in silence glaring at everyone. "I thought I was the life of the party," he says now.
Jay and Susan began to build their case to have him committed to the Centre for Addiction and Mental Health (CAMH) in Toronto. Legally, the bar was high: They had to prove that Jesse was a danger to himself or others.
In the end, instead of making them go to a justice of the peace with their affidavit, Jay's family doctor agreed to make a house call to complete the paperwork.
They called the police at supper time on Sept. 21, 1999, when they could be sure Jesse would be at home. The car arrived about an hour later.
Jay It didn't transpire the way I expected it to. Because he's quite a big and athletic guy, and he had bouts of being quite aggressive and angry, I expected there'd be a real struggle. In fact, I warned the police up front. I think they had one of the cops go and stand at the rear of the house because we were afraid he might bolt. And if we lost him then, we were afraid we'd never see him again. But as it happened, he was totally passive.
Susan I don't think Jesse really quite realized what was going on.
Jesse It's very hazy. I remember talking from the back of the cruiser as we were driving, and I was making friendly chit-chat. I didn't ask them where they were taking me or for what reason. I guess I was really out of it. I didn't put two and two together.
Susan At that point, he had no idea it was us, that we had called the cops.
Jay They handcuffed him. That was probably the worst part of the whole thing to see your son handcuffed and taken away in a cop car.
Susan And then Jay and I followed down to [CAMH].
Jesse The police brought me to the back door there and I was interviewed. And I said [to myself], "Okay, they are going to see I am okay and let me go." That wasn't the case.
Jay To his surprise, they took him to the 10th floor and he was basically I am sure he would call it incarcerated.
Jesse I was admitted to the CIU clinical investigation unit which is where they bring people suffering their first break, which is their first sign of experiencing psychosis.
Susan We'd already talked to the head of the first-episode program and I talked to a person there to make sure they had a bed for him.
Jay But, of course, at that point you don't know what's going to happen at all and you have no sense of where he's headed. You figure that's it he's institutionalized for life. That's pretty rough.
Susan It was awful. That was one of the huge issues, of course, that Jay and I wondered if he would ever forgive us.
Jesse But I did. When I first found out, I was very angry. But then when I thought about it, I realized it had to be done. I had to go through this to get better.
In the elevator after the first meeting with Jesse's doctor at CAMH, his parents were reeling from the diagnosis. Susan looked at Jay: "This is a death sentence," she said. Only about one-third of people diagnosed with schizophrenia make a full recovery and, even then, the disease is a chronic condition.
For four months, every day that he was in the CIU, Jesse and Susan played gin rummy, often in silence. Jesse doesn't remember his mother's daily visits very clearly. At first, there was no sign of change. Jesse still refused to admit that he was sick; the patients on the 10th floor, he says, inflamed each other's delusions.
"It was like one big summer camp," he recalls. "I got pretty good at Ping-Pong."
For four months, his doctors experimented with medications. He was released briefly at Christmas, but went off his pills and had to return. His parents finally took Jesse home for good in February, 2000, although he was only beginning to improve. Susan spent her days reading him the entire series of Harry Potter. At last he showed progress on a new antipsychotic called Clozapine.
Even so, it was a year before they began to see signs of the old Jesse. He could follow a conversation. He showered. He spoke less often about the voices. He began to talk about getting a job.
Jesse I was very lonely for a very long time. It was really tough. Because I had never been lonely like that before. There was nobody around except my folks. My parents became my best friends, pretty much.
Susan It was a very long, slow process. But he just started to be less delusional. He started to be more interested in doing a few things. … He was still not in great shape for quite a long time. But by a year, he was able to go to an interview and get a job at Burger King.
Jay We got to a point where we thought he was probably as good as he'd get, and then he would get better.
Jesse That's the thing about schizophrenia, about a brain disease. It's not like you had a fall, you broke a bone, and you put it back in place and it heals. It's like a work in progress, putting your life back together. You are constantly learning on the way. And you don't know exactly where it came from, so you don't know exactly how to fix it or cure it.
Jay When he started to experience the recovery, it was like having your long-lost son return from someplace, after he had been presumed missing.
If you met Jesse Bigelow today, more than eight years since his release from the hospital, it would never cross your mind that he had a mental illness. He's tall and clean-shaven; his handshake is friendly, his eyes warm. He makes jokes. He tells his story frankly and with an easy eloquence.
Out for a walk, he offers to help a elderly man cross the street and waves at his hairdresser through the window of his salon.
Over the years, he has reclaimed his life, piece by piece, and in many ways started fresh. He falls within the lucky percentage of people with schizophrenia who are able, though medication, to control the disease.
Now 29, he attends a United Church faithfully (something he never would have done before his diagnosis) and sings with a band in a local pub on Sunday nights.
He is working toward his black belt in karate.
For two years, he has been dating a woman he met during a poker tournament; she knows that he has schizophrenia. And after three years at Burger King, he is now a peer-support worker with the Canadian Mental Health Association, helping young people who are suffering their first psychotic incidents, and speaking publicly about his illness. He encourages people to seek treatment early, a key factor in better outcomes.
He feels a sense of purpose he did not have before. "I am trying to be a good man now," he says. "Someone I can be proud of."
Melissa, now 34, has a newfound respect for her brother. She works as a property manager, having decided after his illness not to pursue a career in psychology: "I decided I couldn't sit there every day talking to people with these issues and not be sure I could get them to come out on the other side."
Healthy as he is, Jesse is not cured. At times, he has experienced "breakthrough symptoms," times when his medication, which comes with a risk of serious side effects, must be increased.
He recognizes them now the sensation that his left arm feels detached from his body, or feeling overwhelmed and crowded by people on the street. And though his mother knows he can be trusted to take his medication, she still finds herself occasionally checking the pillbox in the morning.
She and Jay worry: Jesse may never have a full relapse, but what if some day it happens when they aren't around?
"That's the one lingering question mark," Jay says. "Can this last? Is this permanent?"
Three months ago, on the subway, Jesse heard the voice again. It was, he says, the scariest experience of his whole life, not because he would ever act on it, but because of what the voice was muttering to him: "Kill yourself. Kill others."
It felt so real when it happened that he still had to reason it through: "Logically, I know that I can't read people's minds. I am sure this is not what they are thinking. But I hear it nonetheless."
Susan The thing that bothers me is that there were so many times we could have said, "Just get out." And he would have been living on the street or dying on the street. I think that's the most frightening. There are so many people on the street with mental illness, and that's what happened. I understand. You just can't put up with them any more. But you have to.
Jay Don't give up hope. When it looks really bleak, there is room to get better.
Jesse Nowadays, we can talk about schizophrenia, we can talk about bipolar, and hopefully it doesn't send a shiver up people's spine. I like to say "schizophrenia" 10 times a day, so eventually people can say it without even thinking twice.