Welcome Silence – My Triumph over Schizophrenia

Abstract

Welcome Silence - My Triumph over Schizophrenia, published in 1987, is the true story of Carol S. North’s battle with schizophrenia and her subsequent recovery due to dialysis. Her final victory over schizophrenia led her to become a psychiatrist herself because she wanted to help those affected by the same mental illness. She especially wants to make sure that patients are diagnosed properly since she knows from her own experience how painful and stigmatizing the label of being a schizophrenic can be.

Welcome Silence – My triumph over schizophrenia

Keywords: Schizophrenia; Silence

General Description of Schizophrenia

Symptoms of schizophrenia involve delusions, hallucinations, disorganized speech, grossly disorganized or catatonic behavior. The disorder has to significantly impact the patient’s life and symptoms have to be present for at least six months. Furthermore, the clinician has to make sure that the manifested symptoms are not due to another cause such as substance abuse or organic factors. Mood disorders or schizoaffective disorders will have to be excluded before a definite diagnosis of schizophrenia can be established. Then, if at least two of the symptoms mentioned above are present and last at least one month, the person will be diagnosed as having the disorder (adapted from the DSM-IV-TR) [1,2].

Symptoms Carol Manifested

From early childhood on, Carol already exhibited classic symptoms of the disorder, such as hearing voices. However, at that time, in her childish naïveté, she simply assumed that other people were having exactly the same experiences but would just not talk about it because it was so trivial. When the family home went up in flames and her symptoms – due to this traumatic event – severely worsened, her family simply dismissed those symptoms as being a sign of her fear and of the impact of this traumatic event. She started to develop intense fear of being alone in her room and imagined things such as bugs on her pillow even though it was only the flowery pattern of her pillowcase (North, 1987, p. 18).

At that time, not even her parents and their efforts to calm her down, seemed to comfort her. In fact, the only comfort she could find was in religion. She notes about Sundays and attending services together with her parents that these were the times when she “felt secure. To have my world threatened by the ravages of fire was a concept too horrible for my little brain to deal with” (North, 1987, p. 19).

The effects of her severe anxiety also manifested themselves at school. For example, one day at school she was too afraid to ask the teacher to use the bathroom which ultimately resulted in an “accident”. Consequently, she became paranoid and was absolutely convinced that all the other children were laughing and talking about her behind her back due to this incident. Carol further notes about this time in her life: “I was six years old and afraid of everything, day and night. Getting to and from school was a major task. It wasn’t easy dodging killer birds and escaping murderers and kidnappers every day. At night, I continued to be tortured by voices, fires, ghosts and bugs. I started sleeping in Mom and Dad’s bed regularly” (North, 1987, p. 20).

The doctor who was consulted also remembered that, in the past, Carol had already exhibited unusual symptoms such as a very high fever at age four that just disappeared without any treatment or the stomach problems that kept reoccurring with no apparent cause.

Emotionally as well she was having some difficulties since that time, as she explains herself in her autobiography: “Emotionally, I was far behind. I was still battling against the lingering image of ‘baby’. Hence, I could never tell that I still saw ghosts and heard voices offering me cigars” (North, 1987, p. 27).

She also exhibited constant feelings of inadequacy around her peers and moreover she thought that other people could read her thoughts up to the point that she believed she could influence others’ behavior by “telepathic power” (North, 1987, p. 29).

Types of Treatment Tried and Rate of Success of Each One

The first time a physician looked at her symptoms and developed a strategy to help her was around age six. However, at that time, the professional contacted was not a mental health specialist but simply the family doctor who dismissed her feelings of fear and just instituted a system of rewards for every day she would not display any symptoms of fear. This treatment did not correct the problem at all. Carol simply became better at lying or hiding her fears because she did not want to disappoint her family. This behavior of pretending to be absolutely “normal” went on until her symptoms became so severe that they made immediate hospitalization absolutely necessary during her college years.

Then, every time Carol was hospitalized, she was put on some type of medication. These included the antianxiety drug Valium and the antipsychotics Stelazine, Haldol and Mellaril. However, Carol developed severe reactions (spasms and muscle tensions) while taking Stelazine and Haldol.

The psychiatrist in another state where her parents had taken her to try out a different form of treatment suggested putting her on megavitamins (North, 1987, p. 89) which he believed could be effective in her case as it had been in so many other cases before hers.

Another drug that was tried was Navane, again a major antipsychotic tranquilizer, based on Dr. Hemingway’s assumption that “the possibility of a manic-depressive illness cannot be ruled out” (North, 1987, p. 140). Later, the same psychiatrist advised her to double her doses of Haldol and Cogentin (for her dyskinesia) (North, 1987, p. 167) which, however, still seemed not to effectively help with the symptoms she was experiencing.

At the suggestion of Dr. Hemingway, Carol tried the megavitamin therapy once again, although her psychiatrist knew that during the first try this form of treatment had not succeeded at all. This time, however, Carol had to take both Haldol and the megavitamins. The latter caused her nausea and face flushing but seemed to alleviate her symptoms a bit so that she could leave the hospital and continue her studies at medical school (North, 1987, p. 180).

The next drug that was tried to help her manage her condition was lithium. In the words of the author herself: Dr. Hemingway was aware that my mental condition was not improving significantly. He discontinued my megavitamins. He had tried me on almost every antipsychotic medication ever invented, but I couldn’t tolerate any of them in therapeutic doses because of the severe side effects. He even tried me on lithium, an antimanic medication, on the chance it might help; I was able to tolerate the side effects, but it didn’t improve my condition at all” (North, 1987, p. 193).

Then, Mellaril was tried again but at a lower dose in order to avoid the severe side effects which had caused Carol such severe problems in the past (North, 1987, p. 209). When this medication made her dizzy and her blood pressure drop to a critical level, it was discontinued again and she was told to see if small doses of Haldol might help.

The breakthrough came when Dr. Hemingway informed her about dialysis as the new form of treatment for schizophrenia and asked her whether she would be willing to serve as the “guinea pig” for the medical school’s clinical trial. At that point, Carol was severely suicidal and her psychiatrist realized that no hospitalization or medication seemed to help to improve her condition. She agreed to be the “guinea pig”. The first dialysis treatment already significantly improved her condition and after the second one she was virtually symptom-free.

Effects of Schizophrenia on Carol’s Life

During childhood, Carol’s symptoms and intense fear not only disturbed her but also deeply concerned her parents who were worried about what was happening to their child. The first psychiatrist at the local mental health center, however, dismissed every mentioning of Carol’s symptoms as simply being her way of asking for attention in order not to be forgotten due to the three other children in the family. The psychiatrist guilt-tripped Carol’s mother by saying that she, in fact, was causing the problem by “feeding right into the problem by paying her the attention she craves every time” (North, 1987, p. 22).

Later, Carol started to feel more and more uncomfortable around others, especially her own mother, due to the fact that she believed others could read her thoughts. Thus she withdrew more and more from others, made frequent trips to the cemetery and relied more on “the spiritual connection between myself and the dead” (North, 1987, 30) – a behavior which caused a lot of tension between her and her worried mother.

In tenth grade, Carol joined a religious youth group and it appears that some of its members also had a significant impact on the further development of her illness. On the one hand, for the first time in her life, she felt accepted by her peers, but, on the other hand, at least some of them also seemed to plant thoughts in her head suggesting that it was normal to hear voices or see certain things nobody else saw, that this would, in fact, be a sign of a high level of spirituality. At that point in time she not only had the sensation that her thoughts were escaping her brain but that she could see colored patterns in the air – another true sign for her special gift from the Holy Spirit. She continued to place more and more emphasis on religion so that she “would seek to live every moment as a prayer, full of pureness and holiness. That way, no evil forces could possibly penetrate my life” (North, 1987, 39).

Carol then also experimented with drugs following the suggestion of a friend and soon she “discovered Meanings beyond Meanings, all pointing to a cosmic dual reality” (North, 1987, 41). The voices, however, continued to torment her so much that at age 17, she almost committed suicide because she “needed relief from the weight of cosmic significance swirling through [her] brain” (North, 1987, 43).

As she was so distraught, she decided to contact her school counselor who immediately referred her to a psychiatrist. However, the doctor could not help her since she refused to allow him to inform her parents that she was seeing a psychiatrist. Thus her doctor was unable to prescribe her any medication. At that point, she was already diagnosed with schizoid personality disorder.

Carol then was glad to graduate from high school and excited to start college away from home, which meant that her mother would not be there constantly reading her thoughts. However, problems in college continued at a steady pace. She busied herself in school work due to her perfectionist tendencies, but the voices were still there, sometimes more, sometimes less interfering with her functioning. One evening, she became so frightened of the TV; its “evil forces” that she needed constant support of her boyfriend to make it through the next weeks of school. He then suggested seeing a psychiatrist at the university mental health center. The medical student there only prescribed her Valium which did not change anything about her situation.

She soon lapsed into a catatonic state during which she could not leave her bed anymore. At that point, her boyfriend had her committed to a psychiatric hospital. There, the doctors tried different medications which did not improve anything. The only effect of the hospitalization was that she became more and more distraught since she wanted to leave as quickly as possible so that she would be able to continue her studies. Apparently, she did not realize the full impact the illness was having on her life. All she could think of was finishing college. She did not even want her parents to take any part in her treatment because she believed that “they were undoubtedly linked up with the Evil Forces” (North, 1987, p. 76). Her parents subsequently accused Steve, her boyfriend, of having contributed to their daughter’s illness, thus putting even more strain on the already strained parent-daughter relationship.

Carol was then discharged from the hospital but the fact that she was unable to continue her schooling had a tremendous effect on her self-esteem and left her feeling totally helpless, as if she had ruined her entire life herself. At the beginning of the fall semester, she went back to college, but soon exhibited even new sensations, helicopters in the air, which might be sending her certain messages. However, when those helicopters made her run out of her dorm one night, and police found her wandering around barefoot in the snow, she soon was committed to the hospital again – this time to the psychiatric locked ward. This time, the responsible psychiatrist even blamed the mother for causing Carol’s problems - that her being critical and only wanting her daughter to be the best at everything was really causing Carol’s illness. Contrary to what was known from scientific research, he denied any genetic component of schizophrenia.

Carol then could attend classes again and thought she could suppress her feelings of inadequacy by studying extra hard. However, when she took a chemistry exam and failed it, her self-esteem once again was shattered and Hal, the most prominent voice she had been hearing during the past couple of years, told her once again to kill herself. This second suicide attempt failed just as the first one had years ago (North, 1987, p. 104).

Although the voices continued to torment her, she managed to have enough energy to make it through her undergraduate studies and to get accepted into medical school. While succeeding academically, her relationship with Steve suffered more and more resulting in a break-up even before her graduate studies commenced. There, she soon found another friend on whom she continued to rely: “I needed Bruce. At first I needed his help to catch up on my basic biology; later I needed his emotional support and reality orientation. I depended on Bruce to help me sort out what was really going on” (North, 1987, p. 121). Although, they had first planned to get married, much to her parents’ disapproval, this relationship, however, soon deteriorated as well because her illness was placing a disproportionate strain on it.

Later, she again experienced Hal telling her about the Parallel Dimension in which she might have to cross at some point in time. Her condition, while in medical school, only improved when the psychiatrist at the school referred her to another, a certain Dr. Hemingway. He was the first and only psychiatrist who showed genuine interest in her condition and really wanted to help her and not just to subject her to various medications as “standard procedure” required. Her condition did not worsen until it was time to take her final exams. She felt restless constantly, a common side effect of the antipsychotic Haldol she was taking at that point in time (North, 1987, p. 155). Although it would have been best to hospitalize her again this time, Dr. Hemingway trusted her in as much as an increase in the medication in combination with Cogentin would be sufficient in her special case.

Carol then was stable enough to successfully complete her summer externship even though the Haldol’s side effects were still bothering her and she continued to exhibit delusions. At her next appointment with Dr. Hemingway, he then concluded that it would be in her best interest to have her hospitalized again. Carol, however, only stayed in the hospital for one week.

When she did not receive the honor grade on one of the exams she had to take, the voices again suggested that killing herself would be the best solution: “I did not want to die, but I wanted to succeed more than anything else. Death appeared to be the only way” (North, 1987, 194). This third suicide attempt failed again. When she told Dr. Hemingway, he immediately had her committed again.

The last phase of Carol’s illness then involved a concept she used to call “The Change”, according to her psychiatrist “a belief that she will be told a time and place when she is to jump off a building, land in a certain fashion, and ‘free her spirit’” (North, 1987, 213). At that point in time, she was not attending regular classes anymore, but had become the “lecture note service” for her former classmates. Dr. Hemingway then believed that the only way to help her and stop her from trying to commit suicide again was to take advantage of the new treatment, dialysis. She trusted him since she had relied on him as her emotional support system for quite some time and thus she was willing to participate in this clinical trial although she was well aware of the risks. This procedure subsequently cured her.

My Reaction to the Book

This book left me with mixed emotions. On the one hand, I believe it is quite an amazing story if it really happened that way and I am sure it serves as a wake-up call for many patients suffering from schizophrenia and their loved ones who worry about them that – yes, there is indeed a cure. Before reading this book I myself had never heard of the link between schizophrenia and toxins in the blood which could be “flushed out” by simple dialysis. I had always thought that the only way to help patients with schizophrenia was to prescribe them some medication which would make their symptoms more manageable but would never cure them.

On the other hand, however, I was somewhat puzzled after finishing the book since the process of dialysis as “the cure” for schizophrenia sounds like pseudoscience to me. It is also interesting to note that Dr. North states that “[t]he research studies that have been done during the ten years since I recovered from my illness have not shown dialysis to be of benefit to schizophrenics in general. Dialysis is not an accepted method of treatment for schizophrenia, and I have never recommended it for any of my own patients with schizophrenia” (North, 1987, p. 226). But still, she wrote the book and thus might have given others some false hopes. Also, I hope that her main motive for writing her story was not monetary gain.

Other points I found striking involve her diagnosis and treatment. Of course, I am not a professional in the field but, based on the description of her symptoms, I do not even believe that she was really schizophrenic. It seems to me that she has been misdiagnosed quite a few times and that even the diagnosis of schizophrenia was not the correct one. When I look at her symptoms and especially consider the fact that they were at their worst when she was facing intense pressure at home and/or school or later at college or medical school, I come to the conclusion that she really had anxiety disorder or later was manicdepressive. She still had a lot of energy to get her through school and she could take the exams and pass them with flying colors – all which would not have been possible if she were a “real” schizophrenic. In my opinion, the voices she (supposedly) heard could have been an extreme response to all the stress and pressure in which she found herself. At least, I know some people who have had those sensations when they were feeling overwhelmed by school, work and family and they definitely are not schizophrenics!

Furthermore, it did not seem plausible to me that she knew so much about her own illness. Had she really been a chronic schizophrenic, she would not have had a clue about symptoms, diagnosis, medications, let alone be able to function on the most basic level.

Lastly, concerning the medications she received, it seemed odd to me that the psychiatrists not only prescribed her the classic antipsychotic drugs but also antimanics and Lithium. Why would any psychiatrist put a patient on these drugs if it was so clear that she was a chronic schizophrenic?? That just supports my theory that she was not even schizophrenic.

References

1. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4^th edn. Text revision. Washington, DC: Author. 2000.
2. North CS. Welcome silence: My triumph over schizophrenia. NY: Simon & Schuster. 1987.