‘Schizophrenia is really challenging, but I can live my life’
Nicola Wall and Brian Scallan share their experiences of a widely misunderstood disorder
Living with schizophrenia: Nicola Wall with her husband, Kieran. Photograph: Keith Sullivan
As I’m saying goodbye to Brian Scallan, in a hotel foyer in Wexford, I wish him the best of luck. He flinches. “That annoys me,” he says, looking irritated and upset.
Before we met I had made a list of the words and phrases that the 25-year-old, who has paranoid schizophrenia, finds very difficult to hear. I have managed to avoid most of them – “perfect”, “sure”, “exactly”, “absolutely”, “excellent”, “of course” – but then unthinkingly use one. I apologise.
“It’s okay, because I can tell you to your face I’m annoyed,” Scallan says. “It’s much worse when I hear it on television, or people are just saying it around me. I used to tell strangers to their face that they were annoying me. I used to get visibly angry, but I don’t do that now. The medication has helped.”
At his home, in a rural part of the county, Scallan watches television by himself, because he invariably ends up shouting at it, as someone will use a word that triggers his anger or annoyance.
When I push a stray hair behind my ear Scallan tells me how frustrated that gesture makes him. ‘I think you did it on purpose, just to annoy me’
Scallan was diagnosed with paranoid schizophrenia at 18, and is one of six people profiled in a powerful, thought-provoking new documentary, Schizophrenia: The Voices in My Head, made for RTÉ by Aoife Kavanagh and Kim Bartley of Frontline Films.
Since they filmed it Scallan has added three more words and phrases to his list: “definitely”, “sorted” and “spot-on”. He just woke up one day and realised he could no longer bear them.
Scallan believes the words are targeted at him, to annoy him. He knows this is irrational, but this is the way his brain works. The words are so common that each day involves many challenges for Scallan.
Wishing him the best of luck is not the only time I unwittingly jangle his nerves. After we meet I also push a stray hair behind my ear. He tells me how inexplicably frustrated that gesture always makes him. “I think you did it on purpose, just to annoy me,” he says. Sometimes he believes people are reading his mind.
Scallan agreed to take part in the documentary because he hopes it will help people understand more about living with schizophrenia. “You might still have a lot of questions at the end of the documentary, but you will know more than you knew at the beginning,” he says.
Seven years ago, at college, Scallan experienced a traumatic event and had to drop out. At one point he attempted suicide. He started to hear voices. “Vicious voices.”
Some were telling him to kill himself. “It’s a man’s voice, but the voice varies. I can’t concentrate when I hear voices. I forget what I’m reading or doing or thinking. I’m always giving out to myself, and cursing at myself when it happens.”
He also had hallucinations. “Shadows in the windows. Imaginary people who weren’t there.”
At this very minute I feel okay, but I could end up in hospital tomorrow. You just don’t know. Schizophrenia is a very unpredictable illness
During sessions with a psychiatrist he talked to the imaginary person he thought was also in the room and found it difficult to believe the psychiatrist when he told Scallan that nobody else was with them.
Scallan has had periods of hospitalisation. He works most mornings, in a deli, with supportive and understanding colleagues. As he is only ever able to sleep for between two and four hours a night a full-time job would be impossible at present.
Several evenings he plays soccer with the local GAA club, which knows about his condition.
How does he feel about the future? “At this very minute now I feel okay, but I could end up in hospital tomorrow or next week. You just don’t know. Schizophrenia is a very unpredictable illness.”
“It’s still a taboo”
Nicola Wall also hears voices. They have been in her head all her life, so incessantly that the 28-year-old can identify the single time they went quiet, and for how long. “I only stopped hearing voices once ever, for 17 minutes, in October 2015, in Australia,” she says.
Wall, who is from Dungarvan, was diagnosed with schizophrenia at 22. She agreed to take part in the documentary because she wants people to “realise what schizophrenia really is, not the sensationalised drama version of it. Schizophrenia is really, really challenging, but you can still live your life.
It’s not like you are dangerous or unpredictable, in the way it is portrayed in films. I am Nicola and have a whole personality, and I am more important than my illness
“It’s not like you get diagnosed and your life is over. It’s not like you are dangerous or violent or unpredictable, in the way it is portrayed in fictional shows or films. I just want people to see we are people too. I am Nicola and have a whole personality, and I am more important than the illness I have.”
We are talking in a public space in Waterford city. If I did not know of her diagnosis I would never guess that she is hearing voices all the time. The only sign of anything slightly awry are the hollows under her eyes, which suggest she did not get much sleep last night. Like Scallan, Wall finds it very difficult to fall asleep, and usually manages only three hours, between 5am and 8am.
“I think the language we use around our mental health could be improved a lot,” she says. “For example, ‘psychotic’. It’s become a normal word to use to describe something that is sinister or evil or bad. That’s not what it literally means. I am psychotic right now because I can hear voices in my head. That’s what psychotic is.”
People can be ignorant, but it is usually not meant in a malicious way. They genuinely don’t understand
Wall has heard all the cliches about her mental illness. “The reaction I get sometimes when someone hears I have schizophrenia is: ‘Is that what a psychopath is? Is that like Me, Myself & Irene? Do you have loads of personalities?’ ” she says, referring to the Farrelly brothers comedy in which Jim Carrey plays a policeman with dissociative identity disorder, as multiple-personality disorder is now known. “People can be ignorant, but it is usually not meant in a malicious way. They genuinely don’t understand.”
She thinks some of this misinformation has come from film and soap opera. “A lot of the time, the way it is portrayed, you go off your medication and then madness happens. You’re always just one pill away from a meltdown in a soap. It’s not the truth. It doesn’t work like that in the real world. Unlike depression, or anxiety, schizophrenia suffers from so much stigma. It’s still a taboo subject. I think people think it is a lot more rare than it is.”
“It’s recovery and relapse”
Wall explains what it is like to live with her illness. “It’s recovery and relapse. It’s an endless cycle, but it’s worth it for when you’re doing well. But the media in general, when they cover schizophrenia, they are looking for a success story all the time, as in ‘When did you recover?’ The reality is not like that.”
As a child she thought that hearing voices was normal. As a teenager she self-harmed. “I always had to carry a sharp object around with me.”
She took an overdose before sitting her Leaving Certificate exams. “I ended up in a psychiatric hospital,” she says. It took time for her diagnosis to be reached. Her mother, who died of breast cancer two years ago, was always by her side, advocating on her behalf.
Being open and public with my diagnosis has only been a positive for me. I hated when it was a secret. I feel I have more of a voice now
“When I got the diagnosis it felt scary and lonely at the same time. It was positive, in that this thing I had had a name, and when you don’t have a name the mystery of what you have is worse. At the same time it is a very severe name, with a bad reputation, and so I thought my life was over at that time.”
Wall has had suicidal thoughts. She has tried many medicines. She is not currently on medication, as that works best for her at the moment, and is in her second year studying journalism.
“Being open and public with my diagnosis has only been a positive for me. I hated when it was a secret. I feel I have more of a voice now. I try to be positive. I think we have only one crack at life. My mam told me it is no way to live your life, focusing on the bad.”
When I got engaged people were saying all sorts of things, how most men would run a mile. My mam just said to them, ‘He’s very lucky, too, to have Nicola’
Her mother also told everyone, when Wall got engaged, that her daughter’s husband-to-be was a very lucky man. “People were saying all sorts of things – ‘Oh, isn’t he so good to stay with her, even though she’s so sick?’ – how most men would run a mile. My mam just said to them, ‘He’s very lucky, too, to have Nicola.’ ”
They married this summer. “My husband is not my carer,” she says. “No one of us is the minder of the other.”
She has had to cope with well-intentioned people asking about her relationship and her parenting plans – “not can I, but am I allowed to, have children”.
When Aoife Kavanagh, the producer of the documentary, asked if she knew anyone else with schizophrenia who might consider participating, Wall asked on Facebook for interested people to contact her.
“I got loads of messages,” Wall says. “Including eight from the same small town. None of them went ahead with participating in the end. They didn’t even want to speak to the producer. It’s not their fault. It was just complete fear over the reaction, and about being publicly identified, and they worried about their employers knowing. It’s because schizophrenia is still a taboo subject.”
Schizophrenia: The Voices in My Head is on RTÉ2 on Tuesday, September 19th, at 10pm