Erin Hawkes finds her own voice in When Quietness Came: A Neuroscientist’s Personal Journey With Schizophrenia

As both a neuroscientist and a person with schizophrenia, Erin Hawkes hopes to help others understand the condition

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      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.”

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      9 Comments

      Normal Like You

      Jul 5, 2012 at 11:07am

      Kudos to Erin for sharing her story. It's these sorts of life experiences that hopefully can help change society's perception of what people who happen to have schizophrenia or any other mental illness are capable of.

      As another person who happens to have paranoid schizophrenia, I can tell a similar tale, though I was lucky to never been hospitalized. I was told I could not get an undergraduate degree by my psychiatrist and that I should concentrate on going to a local college to learn computer repair.

      I disagreed with him. I stumbled at first. I'll readily admit that. But I went back to school six years ago. Two years ago I graduated with a B.Sc. in mathematics with first class standing. I have now almost completed my M.Sc. in mathematics and recently have been awarded the Joseph-Armand Bombardier Canada Graduate Scholarship for Doctoral Studies.

      I can identify with many things in Erin's story such as thinking my voices were normal, I experienced delusions too, thinking that I was going to die very suddenly very soon. The thing that Erin's story (and I hope my own) gives is the idea that there is hope even with a serious mental illness and that we can be "normal" productive members of society.

      I applaud her choice to be public with a very private and personal illness and it is my sincere hope that her story reaches those like myself who have schizophrenia, those who have family members who do, those with other mental illness and their families and the public at large.

      Shepsil

      Jul 5, 2012 at 1:21pm

      Excellent article and comment. Understanding one's own situation is just as, if not more, important than being understood. We all need to know why we are the way we are, it gives us some comfort that there is hope. The article and comment above are proof of that. Educating ourselves and society as a whole should be the goal, which will save countless amounts of despair and pain.

      Susan Inman

      Jul 6, 2012 at 11:59am

      Many thanks to Erin for sharing her powerful story.

      It's very important for those of us who are parents of someone with schizophrenia to understand that the search for the right dose of the right anti-psychotic medication can take a long time. Because we believed in a science informed perspective in responding to our daughter's illness, she, too, is now stable and able to enjoy her life.

      It's trendy now for 'human rights' advocates to tell us that everyone should always be free to "choose" whether or not they want treatment. At the same time, these groups ignore research about people like Erin who, when psychotic, have a neurobiologically based inability to understand that they are ill. New research has identified the part of the brain involved in this lack of awareness:
      http://www.ncbi.nlm.nih.gov/pubmed/22498076

      I don't think it is respectful of someone's human rights to allow them to deteriorate in an untreated psychosis. Too many with psychotic disorders end up homeless, in prison, or dead from suicide.

      Erin's story helps the public better understand the 1% of the population who live with schizophrenia.

      Terry Lynn

      Jul 6, 2012 at 1:37pm

      Thank you Erin for your candidness in sharing your story. As a parent of someone with bi-polar or schizophrenia- your story has given me hope that there is a future for my adult child. Thank you for that. Warm heartfelt congratulations to you for all your hard work and successes. Blessings to you.

      Sonya Wachowski

      Jul 6, 2012 at 2:14pm

      Awesome, Erin! It is empowering to hear that you have overcome what I call 'the glass ceiling of mental illness'. That is, the lowered expectations society, and many in the mental health professions, have for people with diagnoses like paranoid schizophrenia.

      Although medications are key to Erin's success, there is also research from Finland that a very specific type of family therapy can be successful in treating people with schizophrenia. In that program, only 20% of people with schizophrenia actually require long-term maintenance on anti-psychotics. (see Robert Whitaker's latest book entitled 'The Rise of an Epidemic for the specifics on this). In that area of Finland, the incidence of hospitalizations and functional impairment from schizophrenia is far less than areas that rely only on pharmacotherapy.

      Also, strangely it might seem, in non-industrialized countries, where they do not have access to pharmacotherapy, people with schizophrenia have better outcomes than in North America and Europe. (ie A higher percentage return to full levels of social functioning, employment etc.) This data came out of a WHO study.

      So, there is more to recovery from mental illness than drug therapy. There is plenty of 'science informed evidence' to support other methods of addressing mental illness, as well as to question the efficacy of pharmacotherapy.

      It is time we widened the horizons of our thinking about what treatment for mental illness could look like... Please be a 'critical' reader of science, and be aware of all the agendas at play...

      Susan Inman

      Jul 6, 2012 at 2:45pm

      I agree that it's important to be a critical reader.

      Ms. Wachowski might find it useful to read Dr. E Fuller Torrey's refutation of the Robert Whitaker's findings. It's available at:

      http://www.treatmentadvocacycenter.org/home-page/71-featured-articles/20...

      The Finland community would assume that Erin's difficulties arose from flawed human relationships. It's a psychoanalytically oriented belief system. These are not the beliefs that Erin espouses.

      People who are interested in the latest in neuroscience based ways of understanding psychosis can find useful material on the website (no connection to Big Pharma) of the US National Institute of Mental Health. www.nimh.nih.gov

      Sonya Wachowski

      Jul 7, 2012 at 8:49am

      If people are interested in the latest neuroscience, I encourage them to also read 'The Myth of the Chemical Cure' by Dr. Joanna Moncrieff.
      Or they could read 'The Emperor's New Drugs' by Irving Kirch.
      They could also follow research articles and books by Sami Timmimi, a child and adolescent psychiatrist.

      I am encouraging the readers to find out about treatments that work. I think we can do better than 11 hospitalizations, with only roughly 30% of people with severe and persistent mental illness returning to full social functioning. And, in other places in the world, they are having success. More success than we are having here. I am saying we should be interested in how they are accomplishing this.

      The Finland community would not assume that her difficulties arose out of flawed relationships. It would assume that respectful listening and empowering the person with schizophrena plays a role in their getting better and not having multiple life disrupting psychotic episodes. We (the researchers and helping professionals) should be interested in that...

      I am not saying medication doesn't play a role (short-term, when people are in the acute phases of their illness). I am saying medications are not the complete answer. People should be taught to understand and manage their symptoms. People can be taught how to manage their stress, develop a support network, etc.

      I think Erin's experience reflects this:

      'I think that 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.'

      nmar

      Jul 8, 2012 at 6:01pm

      Thanks Erin for your story, I will order a copy. I look forward to reading it!

      You show that anything is possible. I, like you showed symptoms early in my life and didn't get help until I was 16. I had a hallucination here, a voice there but it started getting bad when I was a junior in high school. Where every hallucination and voice were persistent. I'm still young, I will be 20 in September so it's only been about 3 and a half years, I have my medication under control since this past June. I was never hospitalized.

      Knowing that you have accomplished something as great as a neuroscience degree, just gives me hope. We have a lot in common. That is. I love the sciences, and am going to school for that when I get all my core classes out of the way. The cognitive symptoms of schizophrenia really effect me. I am now on a combination of meds that have been really good though, and working with the symptoms. I had a good past two weeks, and can't wait to start school again in the fall. I have a good support system, and everyone has confidence in me. I just have to make it happen like you did.

      You have given me hope, and I didn't even read your book yet lol. You showed me that you can get out of these low days and fullfill your dreams. You have a lot of experience with meds and doctors so you know what it's like to be on the wrong medication at the wrong times in your life. That is great that your studies didn't get in the way of your illness. I need to really learn from you! I think writing a book is a great therapy, it's almost like a journal, except complete strangers read it. It takes a lot to go and share your story!

      Thanks!

      Nicole

      Mom

      Jun 16, 2013 at 10:35am

      Erin, I have spent countless hours searching for ... in essence, "hope". I am a mother of a sweet innocent child experiencing some, if not more than I am even aware, of these exact symptoms. I spend many days fighting back my own fears, tears and helplessness of losing my baby. I am not ready to completely accept schizophrenia as the ultimate condition, however I recognize and validate a serious condition evolving. Finding your story has given me the hope and belief desperately needed and a new found strength to fight this now while it is in beginning stages rather than deny the "what if" and use the "it will pass" method. I will not allow my sweet child to endure years of unnessary anguish and torture if I can do something now. Thank you Erin.