2013-05-25T12:37:00-04:00 Erin Hawkes http://www.huffingtonpost.ca/author/index.php?author=erin-hawkes Copyright 2008, HuffingtonPost.com, Inc. HuffingtonPost Blogger Feed for Erin Hawkes Good old fashioned elbow grease. tag:www.huffingtonpost.com,2013:/theblog//3.3220006 2013-05-15T12:31:07-04:00 2013-05-15T12:31:14-04:00

Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/
Given that logic, I did not consider myself to have schizophrenia. When mental health professionals labelled some of my beliefs as delusions, I was not convinced. I was worried, though: microscopic rats were eating my brain. "That's the schizophrenia talking," the hospital staff would say to me. "It is not real; it is a delusion." But I was terrified of these brain-eating rodents, especially as they flooded my system via the countess forced injections I endured while certified -- over 10 hospitalizations in five years.

"Erin, rats cannot even fit inside your head," they'd all say. Furthermore, they'd expect me to use my understanding of neuroscience (I have a Master's degree in the field) that felt like as a slap in the face. Did they not understand that the rats' existence and constant consummation of my brain transcended science? It was of the Deep Meaning.

This "Deep Meaning" was to me the ultimate reality, while again doctors and nurses spoke of delusion. How could I expect them to understand, anyway? I reasoned. After all, this Deep Meaning was revealed only to me, the Chosen One. I had great responsibility: I was chosen to have my brain regenerate after being eaten by the rats, in order for there to be scientific study of this phenomenon. Regeneration in the brain is limited and its widespread occurrence in my brain would be an amazing breakthrough for neuroscience. Since this was, in my mind, based in science, it was obviously not a delusion.

Another delusion (labelled as such by psychiatrists, but I knew better) was that there was a homicidal man tracking my every move. "The Tracker" was a no-name stranger with no claims to fame, working only to effect the Deep Meaning of killing me for research. I wavered from delight that he was acting from the Deep Meaning to terror that he would succeed. However, because this Tracker was not a great, important, and publicly known individual, I assumed he could not be a schizophrenic delusion.

So despite the rats and Tracker and the whole elaborate system of the Deep Meaning, I still thought that I was in no way delusional. What the doctors called my delusions just didn't fit with what schizophrenic delusions were "supposed" to be like. As I said, it was not the CIA.

Looking more closely, though, my delusions did not deviate very much from those "standard" beliefs of people suffering from schizophrenic. The Deep Meaning had free rein to indoctrinate me, coddling me into its "group" (read: as with the CIA, FBI, etc.). Within that system, I was, as it were, a greatly important person -- the Chosen One. But was not, according to Christianity, Jesus the Chosen One? The Prime Minister or the President is certainly "Chosen" by the nation's votes. Despite superficial differences, my schizophrenic reality did not fundamentally differ from those so-called typical delusions.

I think that these shallow nuances of delusion kept me in my illness and away from probing psychiatrists. I did not believe I was delusional, let alone psychotic. I did not talk of the Deep Meaning's rats and Tracker -- no one else did, so why should I? It would take years and an almost-successful attempted suicide by hanging before I would begin to realize medication took the Deep Meaning, rats, and Tracker away. I struggled to believe that these uncharacteristic delusions were due to schizophrenia. Such anosognosia -- the physiological inability to have insight that one is ill -- is very common in schizophrenia and in large part drives the urge to not employ appropriate management of the illness.

I wonder, considering my own journey, how many others may be suffering alone with "atypical" delusions. Do they receive the wrong diagnosis because they fail to report red-flag symptoms -- because they believe their delusions are not "schizophrenic" enough to talk about? I was first given a label of dysthymia and told to take an antidepressant, which delayed proper diagnosis and treatment. I fear this is too common a mistake and, given the evidence that early intervention for psychosis is key to a better outcome for the patient, perhaps a dangerous one.

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Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/
I had little choice. My schizophrenia came with a heavy dose of social deficits, including those that detect discrimination. When asked about being stigmatized, I was often at a loss of what to say. I didn't see subtle unfairness. I couldn't put together a prejudiced tone of voice, a biased body language, an intolerant reception. I was almost childlike and took everything at face value.

When ill, I feel persecuted everywhere, by everyone. That stems from my schizophrenia's paranoia; everyone is against me. My status as the Chosen One in my delusional world of the Deep Meaning tells me that anyone could be in league with the Enemy. But I do not see this as discrimination. I see it as part of the Deep Meaning, a destiny offered to me. I feel like a martyr; misunderstood, but treated in a way that feels like ignorance, not bias.

As I learn to recognize discrimination, I ironically see it most often, and most powerful, in the hospitals in which I have been certified. In there, in the "system," I am summed up in my charts, which are reviewed before the nurses and psychiatrists actually see me. My diagnosis goes both before me and remains a trail behind.

Once, as I was being forcefully restrained by security at the hospital, being readied for needles full of antipsychotics and sedatives, I was as usual hysterical and fighting. Screaming, I felt such terror that the medication they injected in my thigh contained microscopic rats that would then eat my brain (a schizophrenic delusion of mine). A student happened by, stopped, stared, and said, "Oh, can I watch? I've never seen one of these before."

"One of these."? Even socially challenged, terrified me could hear the blatant stigma. Am I a show, a case, a showcase: This is how to deal with an aggressive, psychotic patient?

"One of these."?

Simply one example in the world of mental health care in which as much as nearly one in three workers discriminate on hospital wards, as recently reported by The Guardian (UK edition) . This is almost twice that of the general population (16.1 per cent). I guess my social deficits are receding if I can see those statistics in action (that is, greater stigma in hospital).

Then, due to my budding social senses and the obtaining of a job, I wonder about discrimination that can masquerade as a "poor fit" for a job. In my case, my memory can fail me at times, and I was working in a science lab for only two months before my supervisor said that she was "letting me go" because of this. Was it simply the need for a more competent technician, or was it a good way to get rid of me? We go out of our way to accommodate those with physical disabilities. Why then an unwillingness to accommodate mental disabilities?

To its credit, my employer put me on medical leave for the remainder of our contract (one year) and Human Resources was to assist me in finding another job in the institution (a university). My psychiatrist was consulted and a memo of my deficits and needs were decided. For example, it was written that I cannot work full-time and need extra training. Now, I have found my ideal job advertised -- full-time. But a full-time job is not allowed, now, according to HR. I had to plead my case with my psychiatrist, who finally wrote that I could, in fact, work full-time. Still, I hear doubt from HR that I, with a Master's degree in Neuroscience, should not aspire to a job in my field other than a reduced-hours job of washing cages.

When I send out resumes or go to interviews, I wonder whether I should include what is possibly one of my greatest strengths: I have written, and been involved in the editing of, my memoir. "When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia" was published last year, showing my skills in writing and ability to see a complex, demanding project from infancy to completion. I have decided to go with it.

So do I remain in childlike ignorance or try to join the fight against discrimination of people who live with mental illness? Do I really want to see those one-in-three professionals, the one-in-six public? I am not always sure.

*

Interested in more of my story? My memoir "When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia" is available on Amazon.]]> tag:www.huffingtonpost.com,2013:/theblog//3.3022802 2013-04-08T12:24:51-04:00 2013-04-08T12:10:19-04:00

Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/
The bulimia began, as most things do, after a heart-wrenching break-up, a time when my schizophrenia was taking an even stronger hold on my life. My body, my brain, responded with a fairly normal desire to consume comfort food. Fairly not normal were the voices of my schizophrenia telling me I needed to be punished by an eating disorder.

That first day, it was ice cream. I was past my second litre, trying to somehow ingest the third, when my stomach had not one bit of space left. Dimly, yet enticingly, I recalled tales of the vomitoriums of ancient Rome, remembered girl secrets of high school. I walked calmly to my bathroom, hunched myself over the toilet, and slipped my clumsy fingers down the back of my throat. Heave, heave: it worked! Ice cream up, stomach back to empty.

"Yes, you stupid girl! You throw up, we celebrate! Again, again, again. Look at her, going back to that tub of ice cream. Loser! Pig! Disgusting girl. Fat, fat, fat!"

Those shouted taunts were my voices, auditory hallucinations of my schizophrenia. They wanted me dead ("Die, girl, die!") and now that the relationship drama of the past year had been left behind they hoped that I would hear their loud, continuous jabs and obey. As yet, I was resisting their death wishes, but I had to instead hurt myself another way. Bulimia -- "Mia" -- was the choice.

I wonder now how many people turn to an eating disorder as a result, in part because of their psychosis (Note: eating disorders are not caused by any one thing; I simplify here). Do others try and escape their voices with self-harming behaviors such as bulimia, like I did? Do their voices also spur them on, barking commands to binge, demands to purge, and judgments when they obey? Then there is the control issue: eating disorders are often born out of the desire for the control of something, anything, when severely stressed by life's difficult experiences. Certainly being involuntarily hospitalized repeatedly and at length would constitute stress. That was my experience and Mia thrived under the schizophrenic duress.

In the hospital, where I was diagnosed with paranoid schizophrenia, I was put on an antipsychotic medication (risperidone) and left to heal for four and a half months. Mia snuck leftovers from meal trays and vomited in the shower. I was not a quick learner of purging, though, and my weight went up. I had been weighed me on admission: 118 pounds, clothed, on my five-foot-five frame. Disgusting, I thought: I had been 106 pounds that first night of ice cream purging.

That first night. A dozen years of bulimia began that night. Like a drug, it hooked me my very first time. Then, after risperidone brought tremors and rigidity (like Parkinson's disease) I was put on olanzapine. Terrible mistake: I was, within two months, 137 pounds of (in my opinion) fat. My purging went wild, but was imperfect still, and my binges lingered on my fleshly body.

Olanzapine gave me a ravenous appetite hardly silenced by leftover rice puddings and unwanted Ensure, twinned with a decrease in metabolism. Thus, purging became all-important as my weight ballooned. Another link Mia owed to my schizophrenia and its treatment.

A move across the country from Halifax to Vancouver left neither my schizophrenia nor my bulimia behind, but at least afforded a change to the antipsychotic clozapine. Then quetiapine. In between, I relapsed (I had stopped taking my medication) and my schizophrenia found new ways to dictate my diet. So, a "Deep Meaning Diet" was adopted: carrots, because a "car" "rots" the environment, cereal, because I could "see" what was "real," and fruit juice front concentrate (it is a good thing to be able to concentrate). Also, I ate cookies from coffee shops where the cookies were alternatively called "Morning madness" or "Morning glory" -- meaning, what others called my "madness" I called my "glory." Thus Mia was there, too, ever offering enticingly to slip me into a delusion of comfort and control.

Several years later now, I don't see my psychosis (I take pills) and am free of Mia. I was hospitalized a dozen times for the former and in residential treatment for the latter. Now, life is easier, quieter without them. There is such shame around eating disorders and such stigma around schizophrenia that I wonder how many others experience similar ties between the two -- secretly suffering. I hope that by speaking my story others will be more empowered to find the help they need.

Interested in more of my story? My memoir "When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia" is available on Amazon.

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Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/
An irony: an effect of antipsychotics is that less dopamine (a neurotransmitter whose work is affected in schizophrenia) is sent as a message to the next neuron, but in fact, this may actually cause a "supersensitivity" to dopamine. In "The Scientific Case Against Forced Drug Treatment" presented by Robert Whitaker in February, Whitaker runs with this, blaming antipsychotics for causing psychosis.

There is some evidence of dopaminergic supersensitivity in medicated patients but, again ironically, it is time-limited and seen most in the patients with schizophrenia that have the best prognosis. Perhaps that is occurring in my own medicated brain. Would Whitaker recommend (strongly) that I stop taking the medication?

However, when my brain is unmedicated, my schizophrenia runs rampant. I am psychotic, hallucinating, and awash in paranoid delusion. I do not go to work, I do not answer my phone; I flee to the streets lest the police come to my home and collect me for yet another hospitalization. I live in constant terror because microscopic rats are eating my brain and a homicidal man is tracking me down to shoot me. I am not on medication. That is my right. But have I chosen to be med-free of my own volition?

How do you choose for or against psychosis when psychotic? By very definition, you are of "unsound mind" when making that choice, the criteria accepted by most mental health care professionals (along with being a danger to yourself or others) as the green light to provide medication without your consent.

Personally, I have been on the receiving end of forced medication. Throughout my 11 certifications (forced hospitalizations), I was repeatedly injected with drugs without consent. More specifically, against my consent, I was screaming and crying for them to not inject me. I never won. But now, I take medication for my schizophrenia voluntarily every day. Why? I learned from those forced injections that meds made things easier: voices are quieter, delusions and paranoia smaller.

I would never have consented on my own, preferring to exercise a "right to be unmedicated" over a "right to life-saving treatment." While I do not believe that every forced intervention was warranted, I do believe that without some involuntary treatment I would be at best psychotic and, at worst, dead. Oh, did my voices ever want me to kill myself. I count myself lucky that some medication ordered by some doctor brought me out of that state.

Now, is life without schizophrenia and without medication a possibility? I know from experience that every relapse followed a decrease (or cessation) of my meds. Round and round that revolving door. Isn't that the definition of "insanity:" to repeat a behavior expecting a different response? I kept stopping the medication, only to wind up on the hospital psych ward again. Finally, I understood: take meds and stay sane and free.

Or am I a deluded victim of the "drug era" I am in?

Robert Whitaker's presentation ("The Scientific Case Against Forced Treatment") to the Mental Health Legal Advisors Committee, astonished me at the absurd simplification regarding that "pre-drug and drug era" (1947 and 1967): who can enumerate the countless other factors between these two "eras"? What about the start of an "era" of having more and differing social facilities to support those with mental health become not only available, but also coming with progressively less stigma.

Across Whitaker's "eras," successful "living in the community" has a multitude of possible interpretations (which he fails to note). This includes how long people with schizophrenia live at home as (mentally ill) adults versus in some form of "group home" or supported housing.

In our society decades ago, and across a variety of cultures, many people with mental illness would have been more often cared for among relatives. There are vast differences regarding mental illness acceptance and support across both time and space; differing world-views and beliefs systems must be taken into account when defining such things as "living in the community."

Finally, where in his presentation does Whitaker acknowledge that those most likely to be medicated are those most adversely affected by a psychotic disorder such as schizophrenia? And that this population will show less improvement, regardless of whether they are being medicated. I count myself fortunate in that I do respond to the antipsychotics I am now taking, despite being labeled "severe," "refractory," and "chronic" in the past. It would be great if I could go without meds, but I have learned all too painfully that I get my life back when I am taking those little pills.



Would you like to hear more of my story? My memoir, When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia, is available on Amazon.]]> tag:www.huffingtonpost.com,2013:/theblog//3.2775469 2013-03-18T08:39:44-04:00 2013-05-18T05:12:01-04:00

Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/
When I stop taking those medications I lose my grip on reality, but I don't know this. They, my psychiatrist, a security guard, the police, bring me to the hospital (again) and I am told (again) that I have schizophrenia.

No, I don't. People with schizophrenia don't have a Master's degree in Neuroscience. I'm simply too intelligent to have schizophrenia, right?

Then why do rats eat my brain, why do voices yell at me, and why am I being stalked by a homicidal man with a sniper gun (I've got proof)? I assume it is normal. I don't have any friends and I have withdrawn from my family so no one but Them (doctors, nurses -- everyone in league with the enemy) diagnose me, treat me. So here are your pills.

I remember my first antipsychotic. I was in the psychiatric hospital after a failed suicide attempt and, after drawing me out, my psychiatrist decided to start me on Risperidone. She did not tell me what it would do. Soon, my Voices were quieter, quieter, quieter. Rats stopped chewing and the sniper stopped tracking me. Wow, I thought. Those were symptoms? That was schizophrenia? The scientist in me knew it wasn't a simple placebo effect, since I had had no idea what those little pills were going to do. I became open to the idea that I might have schizophrenia.

Yet repeatedly, over the next half-dozen years, I would leave the hospital quietly, only to be forcibly returned after "decompensation due to medical noncompliance." That is, I fell into the oh-so-common trap of thinking: "I am doing well. I don't need these pills any more. I'm cured." Round and round the revolving door.

You would think that after all of this, I would surely realize that I had schizophrenia. I didn't, though. I was under the heavy spell of anosognosia: the physiological inability to recognize that one has an illness. It is common, and strong, in schizophrenia. But in me, equally strong was a scientist. So, experiment number one: recall that first antipsychotic? Well, it did strange things, things I was not expecting.

My second hypothesis: maybe I was just in it for the attention. When psychotic and certified in the hospital, I would bash my head against the concrete wall until both it and I were bloody; that bled the brain-eating rats out. It also earned me restraints, physical and chemical, which I raged against. I screamed and kicked and cried but the strong security guards tying me up and the nurses with injections (rat-laden!) for me always won. That was attention, I reasoned. So I decided to do it. Bang head, fight restraints, scream over injections... it was a good show, but it felt foreign. I was an actor, not a true patient, that time, making me realize that all the other times had actually felt real.

Then there were the Voices that harassed me continually. They yelled at me to kill myself, forbade me to buy even a coffee, and hissed at me if I dared talk to anyone. When these receded with medication, I later -- when everything schizophrenic seemed out of focus -- attempted a third experiment: I tried to create Voices. I thought really hard but to no avail. All I could generate was the "little voice in my head" that everyone experiences from time to time.

Finally, convinced I was too smart to have schizophrenia (an idea of mine echoed by an arrogant psychiatrist), I fought to keep an A+ average at university. I earned prestigious scholarships (two NSERCs, a Michael Smith scholarship, and various others). That's not something someone with schizophrenia does, right? No; there are other people with schizophrenia who attain graduate-level education. It is very hard, but it can be done, particularly when the person is stable on medication.

So a neuroscientist with schizophrenia. I tried so hard to prove I was immune to schizophrenia, but because of my experiments, I am convinced. It was a relief of sorts: an explanation, a treatment, a hope. It came to prove not that I didn't have the disorder, but that I can live beyond it. For me, medication is key; taking it reliably, the master key. And I become a person with schizophrenia who is well.

Interested in my story? My memoir, When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia, is available on Amazon.

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Erin Hawkes http://www.huffingtonpost.com/erin-hawkes/ I was not surprised at the majority of the content (e.g., forced sterilization) but then I came to this on page 14: "absolute ban on restraints and seclusion."

What would they do with me now, were I re-hospitalized?

Over a period of six years (when I was in my early to mid-20s) whenever I was hospitalized for my schizophrenia, restraints and seclusion were used repeatedly, readily, and beyond necessity. Also, I was over-medicated, probably not for my own sake, but to make me a more manageable patient. I was lost in my psychotic world, to the point of bashing my head on the concrete walls on the psych ward. For this, I understand the use of restraints. However, they, along with seclusion, were over-used, to the point of being a punishment rather than for my safety.

By my 12th certification (forced hospitalization) for schizophrenia they would outfit a stretcher with restraints while I was still waiting in Emergency. As soon as I was admitted, they would call a Code White -- aggression -- and within seconds, it seemed, a group of four to five Security officers was there, holding me down as I flailed and kicked and screamed with rage as they restrained me. Wrists, ankles, chest; I couldn't even wipe my falling tears away.

I wept not only because of being tied up; I cried for the high doses of sedatives and anti-psychotics the nurses injected into me, for the strip-search, for the forced changing from street clothes into hospital pajamas in front of all those (mostly male) Security guards.

Then, the stretcher-bound, pajama-clad, medicated me was placed in solitary confinement.

This did not happen just once. Or twice. Try over dozens of incidents. Restraints would last hours, hours, hours; later, when untied, I would be locked in a seclusion cell for as long as a week at a time. Cell, not room: a thin mattress on a concrete "frame," silver toilet in the corner, camera, and a door with no knob on the inside reminds one of a jail cell.

They did all this because I was bashing my forehead bloody on the concrete walls. See, in my schizophrenia, I strongly believed that miniscule rats were eating my brain and, reminiscent of leeching, bleeding them out was most effective.

What else could they do?

Restraint and seclusion: banned?

What would they do with me now?

A short series of electroshock. They did try to get informed consent, but because I agreed to it on the basis of it electrocuting those brain-eating rats, they determined I was unable to make medical decisions for myself. So off to "treatment," their signature on the papers waiving my rights.

And then there are the forced injections. These terrified me, as I delusionally believed that they had more rats in them, enough to eat my entire brain. Nevertheless, amid my screaming cries, pleadings, and sheer panic, in went the needles. That absolute terror certainly falls within the guidelines that "fear and anxiety produced by indefinite detention, the infliction of forced medication or electroshock, the use of restraints and seclusion, and the segregation from family and community, etc., should be taken into account" (pg 16).

Much of what happened to me while held involuntarily could have been averted. For example, when well and on the "outside" I walk everywhere. Confined, I pace. This calms me, and lulls those rats to sleep, further decreasing my anxiety. The nurses, however, see it differently. They call it agitation, and agitation means you must take their PRN pills. Rat-filled pills.

So I decline; they insist.

But there are rats in them! I protest.

Erin, there are NO RATS in this medication. Now take it orally, or we will have to restrain you and inject.

No! No! No!

Look, see how agitated you are!

They win, with the help of security.

What trickle-down effects will banning such practices have? How enforced, and with what consequences? And how will they deal with acutely psychotic and delusional patients such as I have been?

What would they do with me now?

They are still allowed to declare me of "unsound mind" and a "danger to self," the exception to the ban. I will certainly admit that I was of unsound mind (rats?) and a danger to myself (bashing my head). They may detain me ("deprivation of liberty") but where does the line between sound and unsound fall?

What is abusive and what is humane? In the moment, I cannot tell; I am delusional. Somebody has to decide for me, and for many others, that forced treatment is more compassionate than neglect of persons with severe mental illness, neglect that leads many such people to live disconnected lives on the street or in jail.

The UN is, at a certain level, one such somebody.

Interested in my experience with schizophrenia? My memoir, When Quietness Came: A Neuroscientist's Personal Journey With Schizophrenia, is available from Amazon.

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