06 November 2014 "Ken Steele and Schizophrenia in The Day the Voices Stopped"
Written for a Psychopathology course taken at Loyola University Maryland.
The DSM-5 criteria requires that two or
more specific symptoms must be present for at least one month in order for a
person to receive the diagnosis of schizophrenia. These symptoms include
delusions, hallucinations, disorganized speech, disorganized behavior, and
diminished motivation or emotional expression. When Ken Steele was fourteen
years old, he was sitting in his house listening to the radio, and one of these
symptoms hit him unexpectedly and with full force: all of a sudden, Ken began
to hear voices commanding him to kill himself. They provided several different
methods for him to do so, and were cruel and unrelenting. (Steele and Berman,
2001).
At the age
of fourteen, Ken had seemingly been a perfectly normal boy. He enjoyed reading,
writing, going to school, and was closest with his grandmother. However, after
the first incident with the voices, things quickly went downhill. Ken had more
and more difficulty separating his hallucinations from reality, as the omnipresent
voices were able to draw from his own experience and gain credibility. For
example, when his mother became pregnant and his parents found out the baby would
be a boy, the voices used Ken’s own insecurity about his father to convince him
the new baby would be the type of son his father had always wanted. The voices
were so berating that eventually Ken found himself responding to them and obeying
their commands. He gathered the materials requested, and prepared for the
suicide his hallucinations wanted. When he was overheard by his parents responding,
“Okay, I’ll kill myself.” in a desperate attempt to appease the voices, Ken felt
no choice but to run away from home, though he soon returned after a failed
suicide attempt (Steele and Berman, 2001).
In less
than one year, Ken was suffering severely from three main symptoms of
schizophrenia: hallucinations, delusions, and disorganized speech and behavior.
He was also quickly losing touch with reality, unable to function properly in
school and was no longer able to keep up friendships or a good relationship
with his family. In addition, he was quickly beginning to feel paranoid,
fearing that everyone was angry and hated him. It was a textbook case of
schizophrenia. In fact, after one particular episode, his parents received a diagnosis
from the family doctor, but Ken was the only one to take it seriously. He
researched the disorder, and was terrified to learn that the words “insanity”,
“incurable” and “lifelong” were all associated with a schizophrenia diagnosis
(Steele and Berman, 2001).
Ken’s
schizophrenia took hold of him extremely quickly, and had almost complete
control of him for most of his life. In line with the genetic etiology of
schizophrenia, Ken had a distant family member who also had schizophrenia,
though this family member’s situation was something Ken’s family kept brushed
under the rug. The disorder emerged when he was a younger adolescent, but other
than his genetics it is difficult to pinpoint additional specific aspects that
may have caused Ken’s schizophrenia to emerge. However, there are several
crucial aspects that may have contributed to the amount of struggle that Ken
faced with his disorder, the first being his familial relationship, the second
being his experiences with the mental health system, and last the feelings of
hopelessness which tended to push him more toward his hallucinations and
suicide.
Ken had a
complicated relationship with his parents, one that was strained even more so
by the presence of his disease. Ken’s father was especially detrimental to the
development of Ken’s mental health because he refused to even consider that his
son was truly sick and needed help. He refused care for his son when it was
offered, and his distant attitude made it easy for the voices to convince Ken
that his father was completely against him. By the time he was seventeen, Ken
decided to leave home and attend a writing school in New York City. His family
eagerly agreed, sending him away with monthly allowances as their last tangible
connection (Steele and Berman, 2001).
While
it may have seemed like a good decision at first, Ken soon became overwhelmed
in such a large city. The writing school was a sham, and as the voices took a
stronger and stronger hold, Ken was unable to maintain a job or pay his rent.
He became involved in prostitution, a world that he described as similar to the
world of the schizophrenic because “the bizarre becomes normal.” (Steele and
Berman, 2001, p. 44). As Ken became more deeply involved in prostitution and
formed unhealthy relationships with men, he developed the idea that his
situation was hopeless. At eighteen, he no longer had familial ties, not even
legally. He once again contemplated suicide, almost completing the act before
he was caught and taken to a hospital (Steele and Berman, 2001).
Feelings of hopelessness are an enormous
contributor to suicide or suicide attempts, and Ken was no exception to this.
When he felt hope, he was more likely to listen to people on the outside world
and fight against his voices and what they told him to do. However, when he
felt hopeless, such as he did trapped in his situation in New York City, he was
more apt to listen to his voices and appease them with promises of suicide. As
explained about hope from a recent study involving a hope scale measuring
schizophrenic patients in South Korea, “hope has been shown to facilitate
recovery from mental illness,” (Kwisoon, C., 2014). When Ken felt there was no
reason to have hope, he became more immersed in his illness and more likely to
begin listening to his voices (Steele
and Berman, 2001).
Ken’s
experience in mental hospitals was another big contributor to the development
of his disorder. The cruelty of the staff and the extreme over-prescription of medication
caused him both physical and mental confusion and suffering. After a
traumatizing experience in which Ken was the victim of a gang rape in one of
the hospitals, he lost trust with the outside world completely. He appeased the
voices with promise of suicide because he truly believed at the time that death
would bring a great release from the suffering of life. Developing techniques
of fooling doctors and “tonguing” pills became his method to escape those whom
he truly believed were trying to hurt him: the doctors, nurses and medication
(Steele and Berman, 2001).
This stigmatization of those with
schizophrenia has been quite prevalent in mental health institutions. In fact,
in one recent cross-sectional survey across twenty-seven countries, results
showed that more than 38% of schizophrenic participants felt disrespected by mental
health staff members (Harangozo,
J., Reneses, B., Brohan, E., Sebes, J., Csukly, G., López-Ibor, J., &
Thornicroft, G., 2014). This
stigmatization is key, as in Ken’s case, because it often leads to extreme generalization
and extreme mistrust between those with mental illness and mental health
professionals. In another way it makes treatment much more difficult; the
patient might tend to group all medication as something harmful, and therefore exhibit
avoidance of medication altogether in order to avoid what they believe causes
them suffering. The idea of medical nonadherence is discussed in an article
written by Kimberly Shuler. Shuler concludes that finding the best medication
possible for the patient and good involvement with caregivers are both essential
to promoting adherence to medication. (Shuler K. M., 2014). Ken experienced
many years both in and out of hospitals, both on and off medications, and in
many situations he was forcibly given medication to calm his psychosis and make
him more easily dealt with. Because he was not given optimal medication and
because he did not initially have a good caregiver to help him, when it
eventually came time for him to make his own decision about recovery, he had
trouble establishing trust with a clinician and opening up to the idea of
regularly taking a medication for his illness (Steele and Berman, 2001).
Schizophrenia is an all-encompassing disease,
and for Ken it was no exception. What the disease took from him, recovery could
only partially retrieve. Most extremely, the disorder stole years of Ken’s life
away from him. As aforementioned, Ken Steele suffered from auditory
hallucinations for more than three decades, from that fateful day when he was
fourteen all the way until another fateful day thirty-two years later, May 3rd,
1995, when the voices finally stopped completely (Steele and Berman, 2001).
Ken suffered what totals to years of his life
in mental health institutions. Many of this time he spent dealing with
inappropriate dosages of medication that caused miserable side effects. Aside
from his time in hospitals, he spent time involved in prostitution, the
wandering life of homelessness, and terrifying isolation. Ken found himself in
these situations simply because he believed he did not have any other option.
Jobs that required too much concentration were almost impossible for him to
retain, and the intense stigma associated with his illness made acceptance and
assistance seemingly even more unattainable. (Steele and Berman, 2001).
However, the years when his illness had
the most control of him were not the only years the illness stole away from
Ken. At one point during his life, Ken discovered that alcohol was a major
deterrent for the voices. The more alcohol he drank, the quieter the voices
became until eventually they were drowned out almost completely. On several
different occasions, Ken attempted to commit suicide by combining drugs with
alcohol. Though these suicide attempts failed, Ken did manage to shorten his
life significantly thanks to his bouts with substance abuse. In addition, malnutrition
thanks to homelessness, physical complications from the rape in the hospital,
and sustained injuries from extremely physical fistfights pushed Ken’s already damaged
body to the brink. In the last years of his life, he was mostly restricted to
his apartment, and had to use a respirator every night in order to maintain his
breathing. On October 7th, 2000, Ken passed away peacefully, just
short of his fifty-second birthday (Steele and Berman, 2001).
Aside from time, Ken lost all
relationship with his brother, who was so immersed in the stigma of
schizophrenia he refused to see or speak to Ken ever again. Even his
relationship with his parents was strained, as their beliefs about the disease
paralleled Ken’s brother’s. Ken’s grandmother, the member of his family to whom
he was most closely attached, passed away during a time when Ken was far away
from home, leaving him devastated and without closure when he finally received
the news (Steele and Berman, 2001).
Schizophrenia is an extremely cruel
disease, and it was no different for Ken Steele. However, though schizophrenia
stole a lot of things from him, Ken was able to reclaim his life in its last
few years thanks to several important things: therapy, advocacy, medication,
and education.
When Ken finally discovered Dr. Rita
Seiden, it took him two tries to get serious about working with her to conquer
his disease. However, once he got on the right medication and began to
understand how the therapy was helping him, Ken was able to pave out his own
successful path to recovery. He had become involved in advocacy for those with
mental illness previously, but with the help of Dr. Seiden he was able to get
even more involved and help many families with members suffering from
schizophrenia. It was through this advocacy that Ken helped lighten the stigma
associated with schizophrenia as well as other mental illnesses, become
independent and, along with the help of Risperdal, was able to conquer his
disorder (Steele and Berman, 2001).
Not all cases of schizophrenia are so
easily distinguished as the case of Kenneth Steele. However, all cases of
schizophrenia are characterized by extreme symptoms and difficulty functioning
in normal situations. It took Ken a very long time to discover a medication,
therapist, and healthy activities that helped him gain control of his illness
and build a path to recovery. The most important thing to do in order to avoid
more situations like Ken’s is to work to reduce stigma, and to be supportive
towards those suffering from mental illness. Schizophrenia is as real and as
damaging as any disease of the body, and it is extremely important to have a
good understanding of this in order to move forward.
References
Harangozo,
J., Reneses, B., Brohan, E., Sebes, J., Csukly, G., López-Ibor, J., & ...
Thornicroft, G. (2014). Stigma and discrimination against
people with schizophrenia related to medical services. International
Journal Of Social Psychiatry, 60(4), 359-366.
doi:10.1177/0020764013490263
Kwisoon,
C. (2014). Development and preliminary testing of the Schizophrenia Hope
Scale, a brief scale to measure hope in people with
schizophrenia. International Journal Of Nursing Studies, 51(6),
927-933. doi:10.1016/j.ijnurstu.2013.10.018
Shuler,
K. M. (2014). Approaches to improve adherence to pharmacotherapy in patients
with schizophrenia. Patient Preference &
Adherence, 8701-714. doi:10.2147/PPA.S59371
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