Published Date: 2012-07-10
Erin Hawkes remembers the voices. She started hearing them when she was about five, but they were nice to her then. By the time she was a teenager, though, the voices had grown more demanding and controlling, sometimes becoming downright nasty. “Die, bitch, die!” they yelled at her over and over and over again.
The Dartmouth, Nova Scotia, native had no way of knowing that the vicious commands she was hearing weren’t real. Finally, at 22, after years of being told she should end her supposedly worthless life by hanging, she tried.
Hawkes told a friend about what had happened that September 2001 evening and eventually went to the emergency department. Over the next few years, she’d be hospitalized involuntarily 11 times. It took countless days spent in solitary confinement, many talks with doctors, and several different courses of medication before Hawkes got the diagnosis that explained the relentlessly evil voices in her head: paranoid schizophrenia.
“It was a relief to have this term I could look up,” Hawkes says in an interview at a Commercial Drive coffee shop. “I went to the DSM [Diagnostic and Statistical Manual of Mental Disorders] and read all the symptoms and was just, ‘Oh, my God, this happens to me.’ It gave me a way of understanding all these things I didn’t connect before.”
In those years of turmoil, which included other suicide attempts, Hawkes managed to move to Vancouver and complete her master’s degree in neuroscience at UBC. Now 33, she’s been stable for the past five years and is engaged. She’s just landed her first full-time job: at a research lab, where she’ll be maintaining mouse colonies. And she’s written her first book, the just-published When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia. It’s a riveting account of what it’s like to listen to degrading, abusive voices and believe everything they say.
For someone who was told she’d never be a normally functioning human being or a contributing member of society, Hawkes’s accomplishments are nothing short of astonishing.
“I was told I’d never have a job, that I would never be that recovered,” says Hawkes, who smiles often. “I was described as refractory [resistant to treatment], which basically means there’s no hope. It feels good to prove them wrong.”
Schizophrenia, of which paranoid schizophrenia is a subtype, is a complex biological disorder of the brain that affects about one person in 100; its causes are unknown. It strikes most often in the 16-to-30 age group. The Canadian Mental Health Association calls the condition “youth’s greatest disabler”.
According to the CMHA, initial symptoms are more bewildering than debilitating. People can have trouble concentrating or sleeping, become socially withdrawn, have strange perceptions, and neglect their personal appearance. But as the condition progresses, its telltale signs take hold: disorganized thinking, delusions (false beliefs that can be terrifying to people experiencing them), and hallucinations. The hallucinations are sensory experiences, such as the auditory kind that tormented Hawkes, with voices constantly calling her stupid and repeating things like “You die, girl. Die! Let her hang!”
Hawkes had delusions, too. She was convinced that tiny rats were eating her brain and that the only way she could get rid of them was to “bleed them out”. She’d bang her head against cement walls until blood ran down onto the floor, and she cut her wrists with whatever sharp objects she could get her hands on.
Before she knew she was sick, though, she assumed that everyone heard voices and that others were just better at coping than she was.
“In common language, people talk about ‘the little voice in my head’, so I just took it as the same thing,” Hawkes says. “Even when I started to get help, I didn’t even mention the voices because I thought everyone had them.…I would get a lot of flak from the voices if I talked too much, so people just thought I was very shy and not very socially skilled.”
She was also certain that a man was tracking her every move. Again, she didn’t make the connection to mental illness, because the stories she’d heard of those with schizophrenia involved people thinking they were being followed by the CIA, the FBI, or big organizations, not lone strangers.
According to the CMHA, research into the causes of schizophrenia is looking at genetic factors, among other things. Computer images of brain activity show that the part of the brain that governs thought and higher mental functions behaves abnormally in those with the illness. Magnetic resonance imaging, meanwhile, has shown that the same area in the brain of some people with schizophrenia appears to have deteriorated or to have developed abnormally.
Scientists have also noticed a similarity between schizophrenia and autoimmune diseases, in that it tends to ebb and flow in cycles. As Hawkes can attest, its symptoms worsen with stress.
One way she managed to cope was to lose herself in her studies; as a result, she has always excelled academically.
With her background in neuroscience and her own history of psychosis, Hawkes has a unique take on schizophrenia. “As a neuroscientist, I know that without medication the activity in my brain is, to put it simply, characterized by too much dopaminergic activity,” she writes in her book. “Dopamine is a neurotransmitter, a molecule that sends information from neuron to neuron in certain circuits of the brain. Antipsychotics reduce the amount of dopaminergic activity, thus alleviating the symptoms of schizophrenia. However, there are also other circuits using different neurotransmitters such as serotonin and noradrenaline that are also affected in schizophrenia. The newer, second-generation antipsychotics influence these other neural systems.
“I understand it from both outside and within: the neuroscientist in me thinks of dopamine and pharmacology while I, the patient, long simply for the quietness of no Voices, delusions, paranoia.”
When Quietness Came began as journal entries a decade ago, when Hawkes began that intense period of repeated, involuntary hospitalizations, which included time at Riverview, with one stay lasting more than four months.
Though she hated them at the time, she says those forced psychiatric-ward admissions were vital.
“Once I started to take medication, the voices started to go away, the delusions started to go away, the paranoia started to go away,” she says. “For me, it saved my life. It gave me a life. It’s working for me, even though every time I was certified, I was antimedication and anti–forced hospitalization.
“They [psychiatric-ward staffers] definitely did give me too many injections and too many hours in restraints and too many days in solitary confinement,” she adds. “But the medications worked, and I would get stable and they would release me. From 2001 to 2006, I would stop my medication and be back in the hospital, and I fought it every time. But it’s comforting knowing if I do go psychotic again, there’s a system with people who will hold on to me and give me the treatment till I’m well enough myself to say, ‘I need treatment.’ ”
Although she has faith in the health-care system, she says she experienced discrimination and disrespect within it.
“I really want professionals to read my book, because I’ve come across a lot of nurses and a lot of psychiatrists who just don’t get it [paranoid schizophrenia] and who don’t really care that they don’t get it. They just have their agenda. They would read my diagnosis, then, without even looking at me, give me drugs.
“There’s definitely a lack of compassion,” she adds. “I remember this one time I was fighting off security guards who were tying me down in restraints, and the nurses were getting the needles ready when this med student came in and said, ‘Oh, boy, I’ve never seen one of these before. Can I watch?’ I just thought, ‘Are you kidding me?’ ”
When Quietness Came isn’t intended to inform only health-care professionals about the everyday, exasperating effects of schizophrenia but also those who know nothing about it. As well, Hawkes wanted to give hope to those struggling with the condition.
“I wanted to write this for the public, to educate them,” she says. “Schizophrenia affects one percent of the population, so you’re going to come in contact with it. This is what you’re dealing with.
“I want to reach other people with schizophrenia and say, ‘Look, I know what you’re going through.’ That empathy is so important. I want to give all those people hope. I went through eight medications before I found a mix that worked. People might have to try two or three or more. I know it’s discouraging, but it’s worth it to keep trying.”