The Boy in the Closet — How I Lost my Best Friend to a Label

Margaret Altman, MSW
25
188
There is no such thing as paranoia 
                                  
 Your 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. 

Hes 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 kids 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.  

Cant, 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 wouldnt 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 didnt 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. 

Marks distress and fears of men were displayed in aggressive behavior whenever he was suddenly approached by an older boy or a man. If I wasnt with him and he couldnt 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. Marks parents were wealthy and influential, and despite my mothers 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 didnt 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 didnt even know me most of the time, and I was completely devastated. I had lost my best friend and couldnt 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 didnt 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 sons 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 Kims father, or educate him about his sons 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.

25 COMMENTS

  1. Thank you for sharing these stories exemplifying the harm of psychiatric labels and drugs. The quote you started with, “There is no such thing as paranoia … You’re worst fears can come true at any moment,” reminded me of my second appointment with the therapist who ended up misdiagnosing the common withdrawal symptoms of Wellbutrin, worsened by prescriptions of Ultram and Votaren, as “bipolar” in me.

    She asked if I had any worries that someone would harm me. I told her no, I had no such concerns. Little did I know, until I later read her medical records, that this therapist had run off like a manic lunatic and gotten a list of lies and gossip from some people who had sexually and spiritually harmed my children. I was also unaware of the fact my new PCP had given me mind altering drugs because she was paranoid of a malpractice suit since her husband had been the “attending physician” at a “bad fix” on a broken bone of mine.

    I should have been paranoid that child abusers and incompetent and unethical doctors would try to harm me. But I was in denial of the abuse at the time, and I used to believe pastors were trustworthy humans, and doctors were ethical and respectable human beings who take a Hippocratic Oath promising to first and foremost do no harm. These same doctors oversaw, for 3 1/2 years, as I was poisoned via anticholinergic toxidrome with three distinctly different combinations of drugs, all the while, they were all swearing up and down that the “mad as a hatter” illness could not possibly be caused by their drugs.

    Dealing with doctors and a pastor who barely knew me, but wanted to murder me to cover up the abuse of my children and proactively prevent a non-existent malpractice suit was far beyond my “worst fears.” I’ve since learned such a medical / religious cover up of child abuse and easily recognized iatrogenesis is “the dirty little secret of the two original educated professions.”

    “Labels obscure what’s really going on” and the “gold standard” treatment for “bipolar” – poly pharmacy with neuroleptics, “mood stabilizers,” “antidepressants,” benzotropine, etc. can very definately cause anticholinergic toxidrome, which emulates the positive symptoms of ‘schizophrenia.’

    I hope some day the religions and medical communities will get out of the business of profiting off of psychiatrists gaslighting people to cover up child abuse and easily recognized medical mistakes. “Dirty little secrets” are called such because they are unacceptable human behavior. It’s rather sad to live in a world where one can no longer respect the clergy, the medical community, the bankers, or even the psychiatrist believing legal and judicial communities.

    I’m hoping for that happy ending, but I don’t know how we get there without exposing the real criminals within humanity, in the hopes these hypocritical “professionals” will change their ways. Our too paternalistic, greed only inspired, never ending warring, male chavanistic pig society is a not the answer. Our society needs to evolve.

    • Margaret:’From 1989-1990 I spent 4-5 months of my life in two state hospitals,’a private
      Psychiatric hospital, and a crisis unit. Many auxilary personnel for genuinely decent
      people,’and this greatly softened the blow on institutionalization and stigma.

    • Excellent and heart wrenching reply to too very sad stories.

      This is a note I emailed to my sister, like the rest of my family, very skeptical about anything other than the medical model. I live alone and continue to suffer the consequences of my association with this fundamentally evil, loathsome, and self-promoting profession:

      STOP THE LIES

      Hi (Blank),

      You have no idea how much all of this has ruined my life and continues to ruin my life. My association with this horrible, false, and self-perpetuating profession will haunt me until I am dead, but hopefully not hooked up to a constant stream of ‘meds’, before then, which would be worse.

      I’m a “talented,” intelligent, good-looking, kind, and caring gentleman, probably have been for the vast majority of my life. My hope for a “normal” life, according to them, was lost when I became a “patient.”

      I wish it would just all go away, but I have to live with this and I’m going to be 56 next month. A psych label and its consequences, especially my old one, is a condemnation worse than death.

      Love,
      Dave

      • Please no, do not think you have been lost to what may be considered a “normal” life. But, who wants “normal” anyway? There is a soul, a spirit, a unique person still inside you with specific intelligences, personality characteristics, way of thinking and learning. You are a very special person. You just need to “re-learn” yourself without the horror of the “mental illness label” and all the abuse and terror it included. It takes time, patience, hope, prayer, and willingness to trust yourself again. You must also be willing to take risks that only you might understand; not your friends, family, ill-informed and selfish professionals and others might not understand or might criticize you about. You will make mistakes; but you will learn more than you will ever know about yourself and the world. At times; you will go so lonely; you may not even be able to cry; but it is so worth it. I am on this journey now. And there are people who have got your back; as my pastor would say. You just got to find them. Don’t give up. Just because of what happened to you does not mean your life is over and done with. You are not six feet under yet. You are alive and you have a lot to give. Be strong. Be courageous. Take a risk. Get to know and relearn yourself again. It is God’s pleasure to restore and resurrect yourself to who you are truly meant to be. You have so much to give the world. Don’t give up now; Please! Thank you.

    • “Our too paternalistic, greed only inspired, never ending warring, male chavanistic pig society is a not the answer. Our society needs to evolve.”
      You’re exactly right. And sadly nothing covers up the crimes while blaming the victim as well as psychiatry.

  2. Margaret,
    It’s so sad to read about Mark’s suffering and death. He sounds like a sweet person who was overwhelmed by family abuse that was then compounded by the medicating and illness-labeling of the system, such a common story. It’s a moral crime and a tragedy that he wasn’t offered more understanding and whatever form of social help could have benefitted him – peer support, counseling, meaningful part-time work, whatever he would have wanted and been able to make use of.

    Too bad Kim cannot go to see Dr. Lawrence Hedges, my favorite psychologist in the Los Angeles area. He is great at understanding and helping “schizophrenic” people like Kim work out their delusions and fears – if the family and surrounding system allow it.

    • Thank you for your comment. Do you know that most of the people who were labeled “Schizophrenic” in the in patient units, the ER and the jails were some of the nicest, most frightened people that I have ever come into contact with. When I was out sick for a day, they were the ones who asked how I was feeling and said that they “missed” me.

      • I’ve been doing research into psychotherapy of “schizophrenia” over the last two years. I’ve found anecdotal and clinical outcomes reports for about 800 total severely psychotic “schizophrenic” people, in psychotherapies usually ranging from 2-5 years.

        Some of the data sources are papers and books by Gaetano Benedetti, Lewis Madrona, Vamik Volkan, Ira Steinman, David Garfield, Murray Jackson, Paris Williams, Bert Karon, Harold Searles, the 388 program from Quebec, and interviews I’ve had with about 30 currently practicing therapists from ISPS (www.isps.org), including many people who’ve done intensive psychotherapy with schizophrenics for 20-30 years. All of these people use no medication or very limited short-term medication approaches to psychotherapy of schizophrenia.

        What I’ve researched indicates that, if a secure place to live and access to long-term psychotherapy are available, about 80-90% of people with schizophrenia can and do recover to become functional, able to have good relationships, and totally or mostly free of psychotic symptoms. It’s a continuum of outcomes but the average outcomes are WAY better than with medication and no long-term psychotherapy.

        Lest I make cure of schizophrenia sound too easy, it’s very challenging work and involves dealing with strong feelings of terror and rage and learning to trust someone else in depth. But with a sufficiently supportive environment good outcomes can often happen. Coincidentally these outcome levels are similar to Open Dialogue in which 80-85% of clients return to work and functionality within 2-5 years.

        Unfortunately, long-term medication precludes these outcomes because it damages the capacity to think, reflect, and process emotions. Secondly, there are not enough therapists offering this type of therapy at an affordable cost, and not enough safe housing / other supportive low-stress environments for people labeled schizophrenic, as you well know because of your work in jails and institutions.

        It’s sobering to think of what sort of transformative help could be offered to the several million people in the US labeled “schizophrenic”, and the type of “help” that is actually offered. In other words, psychiatrists are responsible for the soul murders of millions of “schizophrenics” who could be redeemed but never get that chance.

  3. Thank you for this. I had tears in my eyes reading about your friend. I am so sorry for your loss and so grateful that your experience inspired you to do the work you have done and are doing.

    Psychiatric labels absolutely do change perceptions in a negative way, obscure what is really going on, and shut down communication. We as a society can do better than that and we as individuals deserve better than that. The current paradigm of “care” is inexcusable. Often, it is murderous.

  4. Please let me thank all of the thoughtful and compassionate people who respond to my post. I have not, in the past shared my personal stories….but I feel safe here to share and to promote alternative ways of helping individuals through their terrible periods of distress. As a therapist and a survivor I did use non-medical and non traditional ways of helping people trapped in the locked wards and jails but here I have found new ways of thinking about what I was doing and how it helped. This forum is amazing and stimulates me to reach out with renewed energy and with your support.

  5. There really is too much murder and rape going on in the mental illness conspiracy and no one is willing to admit to their sins or any wrongdoing. Evil begats evil. Tragedy begats tragedy. Yet, we should never give up. We should keep fighting as if our life depended on it; because it does; all our lives; every single worthwhile person on this planet is affected by this. So, let’s keep fighting; because it is so worth the fight and for all those we have lost let us honor them with the integrity, goodness, and righteous of our fight. We are on the side of right. We shall win. For each step forward; we may go two or ten steps back; but we will win. It is our destiny. Good always defeats evil’ always!

  6. Thank you so much for these heart breaking stories. It sounds like you were an amazing child – I hope sometimes you are able to sit and think about about your wonderful friendship with Mark, and about the joy you must have brought him – without all the sadness and heartbreak taking over.

  7. The power of labels needs to end.

    “When mom was frantically trying to convince the ministry that the sexual abuse allegations were real, they basically labelled her as crazy. And the more she protested, the more she was labelled as being crazy,” Hittrich told CBC.

    The wrongful conduct “ranges from intentional misconduct, bad faith, reckless disregard for their obligation to protect children … to unreasonably supporting the … the children’s father even if it meant he sexually abused them,” he wrote.

    Thanks in no small part to the mother, in her distress, being labelled mentally ill by the abusive father.

    http://www.cbc.ca/news/canada/british-columbia/ministry-abused-authority-in-case-of-b-c-father-sexually-abusing-his-children-judge-1.3152309

    • This is terribly disturbing and it probably is not the only case of it’s kind. Money cannot make up for the tragedy in the children’s and mother’s life. Yes, labels have to be thrown out with the garbage. We refuse to acknowledge them, we write about how damaging they are, we can use new language but many have suffered and are still being oppressed.
      Thank you for the comment and the link

  8. Thank you for writing this. You were able to help others because of your friend’s lost life.
    When I was working in the psych unit I would ask about childhood history and found what you have found. I think Alice Miller discovered this truth as well.Your story reminds me of the story of “Sybil.” I don’t think she ever was able to live a full and integrated life that she could have if the abuse did not take place or if family members and community members were able to speak their suspicions out aloud in the air and sunlight.

    In my life, even though I was more informed than most professionals, I had the hardest time verbalizing and telling my close encounters with emotional abuse. I still observe it in some of the extended family and it can’t be changed. So hard to first see, then understand the game plan for life is way off kilter, and then tell and be able to tell a safe and knowing person who has the time and I mean time to sort the whole story out. Then the decision to act how to act and to be able to stand the consequences when you do act. The word “trapped” comes to mind.
    I feel so much for your friend’s mother. The tales she was never able to tell and she is so not alone in her silenced life journey.

    I would really like for Trauma to come front and center in all treatment.
    I really believe it can be generational and the levels we see it in human society are all encompassing.
    Not that everything is trauma. I would allow other factors in, but in my eyes if you dig deep enough it will be there in some way, shape, or form. I would posit the Armenian Holocaust that is so very problematic seeded some very serious personal and family issues for the survivors down through the years. Not to mention slavery of all kinds, famine, other kinds of genocide, and the soldiers of all countries and their families after their return.