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Your are not alone in this fight

Spread the word! “You are not alone in this fight” when it comes to mental illness.

Our goal is to raise $300,000 by Dec. 31, 2012. Your donations help NAMI provide free education and support programs, publish reports and provide resources for people in need.

This year we’re asking you to share your story to inspire hope and break down stigma everywhere.

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Erin's Story

Before I began hearing voices (auditory hallucinations that people with schizophrenia often experience), I heard music. It was classical and soft; very calming to my 5-year-old self. Later, the voices would complement me, call me good things and encourage me. I never spoke of them to anyone else—why would I, since no one else spoke of theirs? I thought everyone had voices. After all, don’t we say in casual conversation, “Oh, the little voice in my head said this or that.” It was not until the crisis of an almost-successful suicide attempt and my subsequent hospitalization that I began to learn that my voices, which were now hateful and mean or talking about me, were not voices, but rather a disease called schizophrenia, which also explained my other symptoms (paranoia, delusions, flat affect). Diagnosis: done. Treatment: drugs. However, that would not be my last hospitalization. There were 11 more to come.

Nor would it be my last medication trial. There were seven more to come, multiplied by roller-coaster dosing rides.

My hospitalizations were not quiet. Usually, they stemmed from “decompensation due to medication noncompliance.” That is, I would stop taking my medications. It took me such a long time to really believe that I needed these medications, that I had a severe mental illness. Or, if I were going through a stressful time, my symptoms would start to take over, to the point where the voices would instruct me not to take the pills. So somehow, I would end up in hospital, whether brought in by my psychiatrist, hospital security officers or the police.

However, that would not be my last hospitalization. There were 11 more to come.

However, I could be relieved that the CIA was not spying on me. Nor were FBI agents looking to bring me down. On the other hand, I did not belong to either of these groups and wasn’t the president, Jesus Christ or Cleopatra. These, I had heard, are the content of delusions that characterize schizophrenia; its delusions are grandiose, and based (albeit flimsily) on the culture we see in the media. Naïvely, I thought that if you were not pulled into these “standard” delusions—and I wasn’t—you could not have schizophrenia.

To further that idea, one of my (many) psychiatrists scoffed, “You’re too intelligent to have schizophrenia.” He pointed out that my speech and thought process were not as disorganized as in the classical way for schizophrenia. Years later, I came across a theory that seemed to fit me perfectly: in lieu of the disorganized processes, mine were regressed; I became child-like. It was a relief to find that out. For indeed, I carried my Care Bear stuffed animals with me to every hospitalization and fell asleep hugging them at night. I talked to my bears, played with them.
They helped me cope with my other symptoms and were a welcome comfort to the at-times harsh tones in the psych ward.

Because of some of my “typical” delusions, I earned restraints, chemical and physical. I’d be out of control, psychotic and resistant, and it often took several security officers to pin me down and tie me up, giving the nurses easy access for injections of sedatives and antipsychotics. Unfortunately, I strongly believed that the injected drugs had rats in them, and I was terrified by this. I, a quiet, compliant woman became unrecognizable. They restrained and injected me regularly, throughout each of my twelve hospitalizations. I’ve been kept in solitary confinement for as long as a week and strip-searched.

This disturbs me even now, years later. However, I am fortunate to respond well to my current medications with minimal side effects. It took me many years to finally believe that I needed these medicines, but I have been very diligent in taking them for the past six years, and have remained well. I still sometimes hear voices, or have the gut-reaction of paranoia or delusion, but I can dismiss it or reason myself out of it. They do not interfere with my life.

After my second hospitalization—four months in Nova Scotia’s provincial psychiatric hospital 11 years ago—I felt the need to express and make sense of my experiences. Beginning then, and after each of my subsequent hospitalizations (about three or four per year, for a month or two each, over the next five years) I wrote. I did so very soon after being discharged, when what I went through, and how I responded, was fresh in my mind. I could remember my symptoms, but was distanced from them thanks to antipsychotic medication. Years later, I accessed and read my charts, and some of its perspective is included in the book that came of it all: When Quietness Came: A Neuroscientist’s Personal Journey with Schizophrenia.

It took me many years to finally believe that I needed these medicines, but I have been very diligent in taking them for the past six years, and have remained well.

I hoped that this memoir would reach out to other people with schizophrenia, offering empathy and hope; to family and friends and the general public to give understanding and thus compassion; and to professionals, who desperately need to better understand and therefore treat with more effectiveness and humanity those of us who suffer from this illness.

It has been about six years since my last major hospitalization. I am determined to take my medication, lest I fall back into the psychiatric hell of both symptoms and treatment. Instead, I have earned a master’s degree in neuroscience. I think that I am ready for full-time lab work – I am actively looking for employment and am confident in my abilities. By taking my meds, I refuse to let schizophrenia dictate my life.

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