“There is no such thing as paranoiaYour worst fears can come true at any moment.”— Hunter S. Thompson
“Where is the little boy?” I was five years old when I asked the neighbor this innocent question. She stood in her open doorway, a big woman who towered over me and made me feel quite small. My mother had told me that a boy lived next door and since I was looking for a playmate I went searching for a friend.
“He’s upstairs.” She said pointing towards a staircase and stepped aside to let me in. She and my mother had gotten acquainted when we moved in a month prior but I had never seen a child around. I ventured upstairs and went through the two rooms, deciding that the smaller one must be a kid’s room since there was a toy truck on the carpet. No one was inside but I sensed that I was not alone. I looked under the bed, behind the floor-length curtains thinking that he might be playing hide and seek.
Finally I heard a noise coming from the closet. I opened the door. It was empty except for a pile of boxes stacked on the floor. Then I heard a noise; a little whimper. Pushing aside the boxes I found a boy crouched down with his small hands over his eyes. He was thin, with dark hair that flopped over his forehead and he was dressed in a dirty shirt and torn shorts. There was a bad smell in the closet that almost made me gag.
“Come out and play with me,” I said.
“Can’t,” he said softly “Skeletons in the air.”
This was my first encounter with Mark, who at five was left alone to hide from the things that he was seeing in the air close to his pale face. He was terrified; even at five that was clear to me. I grabbed his hand and said “come to my house; there are no skeletons.” By sheer force I pulled him up and was able to push/pull him over to my house where I told my mother what he had said. She looked shocked and went over to speak with the neighbor.
This was the beginning of a long and beautiful friendship with a boy who was, by age 7, diagnosed with pediatric schizophrenia. Mark became attached to me from our first meeting; he ate at our house, we bathed together and walked to school hand in hand. He wouldn’t go anywhere without me, and I loved his sweet personality. With me he was generous and kind but with other kids and adults he was terrified and silent. My mother found a pediatric psychiatrist who engaged him in play therapy with me. The doctor didn’t believe in medication for children and all through elementary school he was able to attend school, to play with me, and to use the play therapy sessions to express his fears of his abusive father.
Mark’s distress and fears of men were displayed in aggressive behavior whenever he was suddenly approached by an older boy or a man. If I wasn’t with him and he couldn’t run away he would lash out with his fists to try and distance the man from him. Unfortunately, in the neighborhood he developed a reputation of being “that crazy kid who fights.” When I was at his side I could take his hand and get us out of the situation. He continued to see images of skeletons, robots and monsters when he was in his own home and he retreated to his closet at night. Mark’s parents were wealthy and influential, and despite my mother’s interventions the situation remained the same until his psychiatrist retired. Up until that time we were best friends; still doing everything together, and he had in his childish way told me that he “loved” me. In my presence he remained a loyal friend, generous with everything that he had and affectionate in his own way. I understood that he was in pain from the fear and the visions, but this didn’t affect our close bond.
Mark and I were 14 when his doctor retired and he was referred to another psychiatrist who began to medicate him with the older, more powerful anti-psychotic drugs; Thorazine, Navane and Mellaril. Mark became more and more of a stranger to me; he hid in his room, refusing to come out. He was angry and sometimes completely lethargic. Mark acted as if he didn’t even know me most of the time, and I was completely devastated. I had lost my best friend and couldn’t get him back. Mark was taken out of school and over the next few years he was hospitalized in one of the “asylum” institutions (Creedmore) that was eventually singled out for abuse, and closed.
By the age of 18, when I was beginning college, I only saw Mark occasionally. He looked terrible. He had gained about 100 pounds from the medication and he was sweating as he lumbered around. I could hear him panting and muttering to himself when he passed by me looking down instead of into my eyes. He said something that I didn’t hear because I was too upset by his physical condition.
Then, one day, I made a drastic effort to connect with him. I approached him in his room, dismissing the behavioral cues that he was communicating. He was sitting on his bed, staring down at his hands. They were tight fists. I was desperate to make a connection. I was very assertive in telling him that my feelings were hurt. He tried to get me to leave. I refused. I tried to reach out to him. He finally hit me with his fist to get me away. I realized that I had made him very afraid. He needed his space, and I had violated this at the wrong time. The blow to my arm was not a hard one; he just needed me to be away from him, but I was preoccupied with my own needs. Mark was never violent; he tried to defend himself and keep himself safe.
This was our last meeting. Mark died of liver failure when he was only 32. He died in a tiny, dirty apartment that his parents rented for him. He was alone having been discharged after another hospitalization.
My experiences with Mark were my inspiration to work in the mental health field, with individuals who are in extreme states and who have no families or resources available to them. I understand their fears, and I believe that they are capable of attachment and of responding to care and compassion.
Labels Change Perception
Diagnoses such as schizophrenia mask all of the strengths, feelings and talents that individuals possess, The labels can make people’s behavior appear aggressive, when in fact they are terrified. On the other hand, people in extreme states respond as all humans do to an approach that is calm, supportive, and allows them the space that they need at critical times.
As a clinical social worker I have endeavored to communicate my beliefs and my practice to others when I worked in the emergency rooms, in-patient units, and the jails of Los Angeles. I have seen that individuals who are diagnosed with Schizophrenia are usually treated medically, their feelings and thoughts rarely explored due to more easily diagnosable – and lucrative – “symptoms.” Their narratives and sometimes complex descriptions of life experiences are seldom heard and understood, so they exist in an emotional and social isolation as though they are untouchable and unreachable. After growing up with Mark — 35 years of working with these vulnerable and suffering people — my perspective usually differs from the professionals that I work with.
Labels Obscure What is Really Going On
I have found that many individuals who are diagnosed with Schizophrenia live in fear and that a great deal of their fears are based in reality. Mark was, in fact, terrified of his father. We learned much later that his father had terrorized Mark and his mother and he lost his license as a dentist when patients complained about the often unnecessary pain that they went through in his office.
Individuals who have been abused, neglected, or suffered from traumatic experiences communicate these fears to those who have the patience and willingness to listen to them. They are very aware that others fear them, and when they either reflect or try to deflect that fear their actions are misinterpreted as angry and violent. In confrontations, the fearful individual is often brutally managed and becomes more terrified and traumatized. People who are afraid become strident and bizarre in their increasingly frustrated efforts to be heard – to have their basic needs for safety, love, and meaning – met by those they depend on to care for them.
I am also afraid. My fears are based upon the increasing stigma that burdens vulnerable people, and the ongoing perception that the “mentally ill” are prone to violence. New legislation in New York is alarming for those who carry a mental health label. The NY Safe Act was enacted in the wake of the Sandy Hook shootings to curb access to firearms. This law takes us to a new and dangerous level for vulnerable individuals who, in seeking help and thought to be likely to engage in harmful conduct, may be placed on a list that is given to the Criminal Justice system.
We are aware, given that predicting harmful behavior has never been psychiatry’s strong point, that this law is more than problematic. A UK study commented on in The Lancet found rates of adverse outcomes – including premature death and violent crime in individuals who have Schizophrenia – increasing in comparison to the general population. It gives authority to individuals who label and list those deemed as potentially violent to virtually criminalize them as well. An article in the New York Times, Mental Health Issues Put 34,000 on New York’s No-Guns List, expresses concern that many individuals with mental health issues have been identified as dangerous. The data being collected is held by the state Division of Criminal Justice Services, and this law mandates licensed mental health professionals to report to the authorities a person who is “likely to engage in conduct that would result in serious harm to self or others.” The article explains that because the database is “confidential,” it is not possible to investigate or review the person’s dangerousness and that, given the sheer numbers of individuals who are being reported at any given time and the scarcity of staff to handle the data, there is the real probability of “rubber stamping” decisions regarding individuals’ dangerousness.
Labels Shut Communication Down
I would like to present in closing a case that troubled me deeply. I met Kim in the locked in-patient county hospital in Los Angeles. He was a 17-year-old Korean boy who was hospitalized many times and diagnosed with paranoid schizophrenia. In the Asian community “mental illness” is considered shameful for families. The family became socially isolated because of his condition. The father in this case was a prominent businessman who brought his family to Los Angeles when Kim was 12. The child was unable to make the adjustment to a new environment, and was bullied because of the language barrier and other cultural issues.
I was able to obtain only limited information from the father because he was embarrassed by his son’s failures; in school, with peers, and in the family. The shame that he felt was displayed clearly on his face, in his voice, and even in his posture when he came for short visits and to meet with me. I spent hours with Kim, who was a big youngster with a perpetual scowl on his face. His size and physical presentation made him look angry and formidable. He had episodes at home when he would of break objects and scream when his father forbade him going out of the house. He was labeled “aggressive” and “violent.” Staff and family were petrified of him, though he never attacked people.
Kim began to wait for me in the hallway of the locked unit, and to trust me. He was preoccupied with Korean myths about dead spirits coming back to get him for his sins, and about spirits who whip or flay their victims. He saw shadows of spirits and heard their voices; all of which were male, and who were degrading him and threatening to beat and drown him. When he talked for any length of time (in mixed Korean and English) it was a tangled monologue that had discernible threads running through it.
Put together it painted a picture of a terrified young man who was reflecting the shame, disappointment and anger of his father, whom he revered and feared. He never directly implicated his father in abusive behavior, but he cowered when his father visited and never spoke to him. Kim was very aware of being a disgrace to his family, and to the broader culture, and he reflected their disgust. He lived in a world of fear and humiliation due to the emotional – and possibly physical – abuse at home, the stigmatization that was ever-present, and because he reflected the fears of others who misinterpreted his terror as rage, and regarded him as potentially violent.
He was shunned on the locked unit, and often placed in isolation. Kim was placed in a state hospital where he will, quite possibly, languish and be medicated into compliance and lethargy. I could not influence Kim’s father, or educate him about his son’s emotional distress, and I was not able to get the staff to be more compassionate with him. This continues to sadden me and to drive my efforts to open minds to the lived experiences and needs of our vulnerable populations.