My mother struggled to hold back tears as she spoke these words to me on the morning of March 28, 1988. I remember this morning more vividly than any other memory I have from my early childhood: I was sitting on my parents’ bed preparing myself for the school day when mom opened the door and told me the news. I did not understand why she was crying, or what “died” meant. Days later my brother and I were sent home early from his funeral with some family friends because we kept attempting to rouse my father from his casket. “Why won’t daddy wake up?” my brother asked.
I’ve heard my mother recount my life story many times and she always begins in the same place — when I was four my father went to work in the morning and never came home. He was very depressed, had been abusing narcotics and had threatened suicide on multiple occasions. He never left a note, and my mother still insists it was not a suicide. “He’d been taking a new anti-depressant and was feeling better, he didn’t kill himself.” I tell her that these periods of enhanced mood after lengthy bouts of profound, debilitating depression are the exact circumstances in which many suicides occur.
I was always a very quiet, introverted child, easily frightened and incredibly anxious. I remember having OCD symptoms at a very young age: a vague and overpowering fear would grip me to the point I was afraid to go out in public. Later I learned that these episodes were called “panic attacks,” and they became more frequent as I grew older. When I was around 9, I became so anxious that I would literally regurgitate after I ate. I would have panic attacks and have to leave class. The bullying I’d always experienced because of my gender non-normativity intensified, and I stopped going to school. When I was 6 my mother met the man who would eventually become my stepfather, and he was physically and emotionally abusive toward my two siblings and me. Eventually I began self-injuring.
My mother took me to see a psychiatrist who put me on an antidepressant medication, during which time I attempted suicide at age 11. Soon after, my mother learned of Dr. Joseph Biederman who was the chief of child psychiatry at Massachusetts General Hospital. She took me to see him for the first time when I was 12. She recounted my troubles, beginning with my father’s death, and he made a hasty diagnosis of bipolar disorder — a diagnosis he used for the basis of his “treatment” of me over the next six years. He told my mother that she should come to terms with the fact that children like me “rarely lived to see 18.”
I strongly distrusted Biederman — he was cold and blamed me for my problems; on the one hand I was being told that I was very sick, that there was something terribly wrong with my brain, but at the same time I was being held responsible for the fact that I couldn’t function like other children my age.
Looking back, it was becoming clear to all that I might not grow up to be an economically productive member of society like my white, upper middle class background demanded; I needed to be “fixed.” The problem, according to the adults in my life, was not my unhappiness but my inability to attend school. It was around this time that I was sent to a “therapeutic” school where they mixed kids with emotional difficulties with other kids who were violent. I witnessed classmates’ psychotic episodes, watched as staff members physically restrained them, heard them screaming in agony on a nearly daily basis, and watched their constant comings and goings as they were taken from school and placed on psychiatric wards. It was here, at age 13, that I met the man with whom I had my first sexual experience; he was 19, and I later found out had also raped a classmate’s 12-year old cousin a couple of years prior. Every day I would cry hysterically and plead with my mother to not make me go to this school but her answer was always the same: if I didn’t go to school, I would end up in the hospital or in a residential program.
I have Biederman’s clinical notes from when I was 12 until I was 16. Within those four years alone he had me on varying combinations of 16 different medications including mood stabilizers, anti-anxiety medications, tranquilizers, anti-depressants, an anti-epileptic medication that he believed could treat bipolar, anti-psychotics, and stimulants to counteract the fatigue I experienced from the other medications. When I was 12, I experienced lithium toxicity at a dose of 1050mg per day, so he switched me to Neurontin, a drug that has since been found to halt the formation of new synapses in the brain. He prescribed Luvox, Klonopin, Tofranil, Paxil, Risperdal, Concerta, Elavil, Anafranil, Adderall, and Celexa. He had me on Serzone, a drug that was never approved for pediatric use and was eventually taken off the market for causing liver failure in a number of patients. The manufacturer’s recommended highest dose for adults was 600mg per day, yet Biederman had me on 750mg per day when I was 13 and weighed 110 lbs.
It was when I was 12 that I was hospitalized in a psychiatric ward for the first time. I remember being strip-searched and I remember crying to my mother at the door, “Please don’t let them take me.” She left looking forlorn and unsure, but soon the heavy door to the ward locked behind her and I wailed. “If you don’t stop crying,” warned the nurse, “you’ll have to go in the quiet room.” I could not stop crying. She escorted me by the arm down the narrow, dimly lit hallway, at the end of which was an even more dimly lit room. It was too small to lie down in, and completely barren except the bench that was built into the wall. “I will come and get you when you stop crying,” the nurse said as she locked the door behind me. I don’t remember how long I cried for, or exactly how many times I was locked in solitary confinement in this tiny, barren room during my hospitalization. I still suffer from post-traumatic stress disorder from this experience, which manifests as hypervigilance and a constant, urgent sense of needing to flee wherever I am. That which was supposed to “help” me in fact only served to debilitate me; the label of “mentally ill” was used to justify a paradox in which my accounts of depression and anxiety were believed, yet my accounts of what was contributing to my suffering were not. Although my sense of reality was never compromised, I was deemed incapable of knowing what was best for me and what was traumatic and ineffective.
I was made to see many child psychotherapists and social workers. When I was 19 I went to a neurology clinic where doctors administered transcranial magnetic shocks to my brain. None of this ever helped alleviate my depression or anxiety.
In 2008, Biederman was charged with conflict of interest when it came to light that he’d been taking millions of dollars — the vast majority of which he failed to disclose — from pharmaceutical companies with promises of favorable research results. It wasn’t until my mid-20s that I came to the realization that the way I’d been treated was wrong, and it wasn’t until Biederman was indicted and a Frontline documentary was made about him, that my mother apologized for what I’d gone through. Since Biederman, I’ve seen 4 different psychiatrists, all of whom agree I do not have and never had bipolar, and that the doses of medications he had me on were enormous, especially for a child. He attempted to change the diagnostic criteria for childhood bipolar (which, with the publication of the DSM-5, has been radically revised, and the diagnosis of children with bipolar disorder remains controversial), likely so that he could diagnose more children and turn to the drug companies for funding to research this epidemic he created.
When I reached adulthood, I began to navigate ways to support my mental wellbeing that allow me to more easily live in a society that was not designed for people with neurology that is considered “atypical.” It took a great many years to accept that there is nothing inherently wrong with me, or with people deemed mentally ill. People are sometimes surprised to learn that despite my history, I am not categorically anti-psychiatry. I am adamantly opposed to prescribers having business relationships with drug companies, and I am opposed to the use of psychotropic medications for young children whose brains are not yet fully developed. Finding a medication regimen that addresses my actual symptoms — as opposed to the misdiagnosis and subsequent medical abuse I was subject to by Biederman — has been a key component of the fact that now, in my mid thirties, I feel like I am finally living. However, it is impossible to say whether I have an organic chemical imbalance that predated my “treatment,” or if my brain has become so accustomed to the presence of psychotropics that I now find it difficult to function without them (empirical research in this area has found that long-term use of psychotropics does indeed alter one’s ability to produce certain neurotransmitters). My history isn’t one about a happy, healthy child who was indiscriminately subjected to psychiatric treatment; it is one about a child who could not function according to the standards their society had set and was met with severe and irreversible measures to make them conform. I’m still someone who struggles with anxiety and OCD, a condition grossly distorted by the media, which is in reality characterized by intense fear as opposed to arbitrary compulsive behaviors. I consider myself incredibly lucky to have access to the resources I need and at the same time I feel guilt for the fact that I was allowed to survive largely because of my economic privilege. Often I think about my classmates at the therapeutic school, and the kids I was hospitalized with, and wonder how many of them are no longer with us because of a woefully unjust healthcare system.
I don’t know what my life would have been like if I hadn’t been medicated as a child. One thing I can be sure of is that my brain wasn’t allowed to develop as it should have; the reason psychiatrists are allowed to medicate young children is because it is impossible to prove damage in a brain that wasn’t fully developed prior to treatment. The thought that I will never know that most vital part of me, and that I can’t get back what I never was allowed to have, is never far from my mind. If anything has ever made me feel like life is not worth living it is the knowledge that my body and brain were profoundly and irreversibly violated, and that not only will there never be any accountability, but that the burden of proof is on me, the adult who was once a child who was, in a very real way, punished for my hardships. “What did this do to me?” is not a question that anyone should have to answer.
Up until very recently, fear of judgment kept me from sharing my history with others. I wanted to maintain a façade of normalcy and was afraid I would be regarded as too damaged to relate to if I were to divulge my past. I worried that the people I told might tell others, and that my story would precede me. I have found, however, that stories of survival — survival of all kinds — are not uncommon, particularly in the queer community. There is strength in our narratives, and I have come to a place where I am willing to tell those who are willing to listen.
Note: This article has been corrected to clarify that the criteria to diagnose bipolar disorder in the DSM-5 have been radically revised, even though it remains controversial, rather than that the diagnostic criteria for childhood bipolar no longer exist according to the DSM-V.