Medicine

They Tried to Tie My Brain Down. My story of being ‘Mad in America’ | by Tyler A. Selsor | Nov, 2021

Tyler A. Selsor

My story of being ‘Mad in America’

The author with his dog Otto shortly after coming out of the hospital (2011)

Content Warnings: psychiatric violence, psychotic thoughts, sexual violence, racism, queerphobia, fatphobia

I didn’t remember not having imaginary ‘friends’ until the day I took my first atypical antipsychotic.

No, I couldn’t see them. But I talked to them at night, losing hours of sleep. There was always a hero and always a villain, and I was always the victim. The hero would save me, but the violence was recurring. I was trapped in my violence bubble, playing out my past traumas, but in a different, distorted way, usually attached to the media I was consuming at the time.

The beginning of freshman year of high school it got worse than ever before. I knew something had to change.

I had spent the whole summer in my room with my imaginary people, pretending I was reading. I was almost addicted to it. I began to ‘talk’ to them when other people were in earshot. I would mouth words and make facial expressions. I couldn’t help myself.

It was a big secret I had spent my whole life with and it was bursting at the seams.

Things finally came to a head with my foray into the dark world that was MySpace.

Being a former fourteen year old girl I wanted nothing more than for boys to call me pretty, sexy, hot, beautiful, whatever, you get it. What I got was a barrage of horny requests for sexting and nudes from boys — no men — much older than me. This is a very familiar story for many young women and queer folks now, but it was totally alien to me.

It was like once I sexted with one guy, somehow they were communicating and all knew they should target me. I started to feel weird. I was sexting three guys at a time. It wasn’t even pleasurable anymore.

The tipping point came when one of them asked if I ever changed my little sister’s diapers. I full on lost it. Crying and shaking I deleted every trace of myself on the website. I curled up in my bed and that’s when it started…

I perceived a new voice. A strange one that was part of me but also wasn’t me. It began to make threats on my life first.

“Kill yourself.”

And then a variety of ways in which I could do it. It was beckoning me. Calling me to the edge. When I resisted, it made threats on my family.

“If you don’t kill yourself, I’ll murder your mother first!”

I lay there, immobile, in shock and terror. Maybe if I just didn’t move it would go away.

But it persisted, and eventually it deformed, twisting within me, stretching like clay, and plunging lower and lower into bassy octaves.

“Kill your mother or kill yourself!” began to jump into the thoughts along with other disturbing graphic images of death and torture.

Of course, I resisted. I wasn’t going to kill anybody: not me, not my mother. Not anyone! But I was terrified. I was just 14.

Finally, I mustered the strength to overcome my immobility. I ran as fast as I ever have to my parent’s room. It was night by now. Of course it was night. That’s when teenagers get up to things they shouldn’t.

I woke my mom by patting her arm urgently, but I couldn’t get the words out about what was happening. Never in my life had I told anyone about the voices or the delusions despite years of therapy for depression, anxiety and a suicide attempt.

After what seemed like hours of muteness I whispered in her ear, “There’s a voice in my head, and it’s telling me to kill you.”

I wanted to go to the hospital. I thought it would keep my family safe. I thought they would keep me safe. I thought I would learn how to help myself with whatever was wrong with me.

I was wrong. Not only was I not safe and did I not learn about my illness, I did not even learn what it was called.

The night I went to the hospital was very blurry. They didn’t have enough room so they stashed me in a room with two other girls on a makeshift bed. I took a pill and I woke up at 1 P.M. the next day, barely able to move my body. I now know that this is called chemical restraint. It is supposed to be used to sedate the most violent patients so that they don’t harm themselves or anyone else.

But I wasn’t violent. I was assumed to be violent because of the symptoms I was experiencing.

In my seven days of chemical restraint at the hospital the dose of what I learned was an atypical antipsychotic medication called Invega was lowered somewhat so that I could walk around and follow basic instructions from the staff.

I was not well though. I was not calm. On the outside I projected the docileness of a domesticated animal, but on the inside I was frozen in terror. All I could think about was how my immobility could lead to my destruction through violence — sexual or physical. It didn’t, but it had before.

Going on antipsychotics completely eliminated my imaginary people, but it has not stopped the voice I heard on that fateful night. After ten years of working together my psychiatrist, who is not the doctor who ‘treated’ (or failed to treat) me at the hospital, admitted to me that this voice might be a PTSD hallucination rather than a tried and true schizophrenic thing.

I now take a much lower dose (much lower dose being the key here) of a different antipsychotic, which does not affect me as strongly as the first, but antipsychotics are not without their risks. Antipsychotics can put someone at the risk of motor disorders including tardive dyskinesia and Parkinson’s, dementia, akathisia, and chemical dependency on the drugs among other side effects and comorbidities (Whitaker, 2019).

I often wonder if I had been given competent therapy focused on deescalating my brain or if one of my family members had been trained to sit with me through the episodes, whether I’d be on antipsychotics at all. I’m not anti-medication, but I do think something huge is missing in the way that the American psychiatric system treats people who hear voices, especially people with first time psychotic breaks, as they are more likely to recover without medication (Whitaker, 2019, p. 298).

Furthermore, it is gravely inhumane to chemically restrain someone, as I was, without first going through the proper deeescalation techniques and evaluations. Chemical restraint should only be a last resort because to take away someone’s bodily autonomy is to put them through a special kind of hell that requires the utmost justified of reasons.

I also can’t help but think about the role that sexual violence plays in my story.

Many years later I have discovered, my violence bubble that played out over and over with my imaginary friends through the years was a rape trauma borne of my childhood sexual abuse. The catalyst for my hospitalization was also a sort of sexual violence that reproduced my trauma.

In the hospital, I was conscious that I was a frozen target. That place also reproduced my trauma in ways I’ll never forget.

The antipsychotics did pop my violence bubble, but there was no reason my experience at the hospital should have been as violent and distressing as it was. It added to the harm. It was unsafe and only strengthened my belief that doctors did not truly care about me. It solidified my very reasonable distrust in the medical system.

Ten years later, I can say that I firmly distrust the medical system. Every doctor’s appointment is like preparing for battle. Sure I’ve met some good doctors, but even those failed to see the connections between my symptoms and my life experiences, especially with sexual violence. I had to make those connections for myself through my own understanding of my psyche and my body.

I am my own advocate, my own researcher, and frankly, sometimes my own doctor. I acknowledge that this is dangerous. I don’t have the medical training and I’m sure sometimes I’m wrong, but what am I to do when my doctors won’t step up and critically analyze my situation? What am I to do when most doctors deny my experiences? Why should I have to go from doctor to doctor, seeking just a little bit of validation that I’m human? Why is this system so fucked up that I have to suggest medications, therapies and specialists to them?

And it’s not just me. There are thousands, maybe millions of Americans not receiving proper health care because of systemic societal oppressions.

People exhibiting symptoms of mental illness are held in psychiatric hospitals against their will until they can ‘prove’ they are sane. Of course, now labeled mentally ill it’s difficult to prove that you are sane again when you exist in a limbo period where other people make the decision of your release based on their perception of your psyche, where you denied your human rights.

Upon release, people can be administered long acting antipsychotics which last for three months. After those three months are up however, there is no plan to get that person another dose, which results in an excruciating physical and mental withdrawal period (believe me I’ve been through it) and can actually worsen psychotic symptoms (Whitaker, 2019, pp. 270, 302).

Black women have the highest maternal death rate because doctors don’t believe them or don’t pay attention to symptoms of very treatable conditions such as preeclampsia (Working Together to Reduce Black Maternal Mortality, 2021). There is a widespread belief that Black people don’t feel as much pain, which leads to them not getting as much anesthesia, among another variety of horrors (Hoffman et al., 2016).

LGBTQIA people have born the brunt of medical malpractice and outright murder through neglect. An obvious example of this is the AIDS crisis where the government and the medical system was more than slow to act and let tens of thousands of gay people die before trying to find a cure for HIV (CDC, 2016). A lesser known example, which is just now coming to the forefront through activists like Pidgeon Pagonis is the unlawful, horrifying, and completely unnecessary surgeries being performed on intersex kids in order to make their bodies more ‘normal.’

Fat people also experience discrimination at the doctor. Fat activist Aubrey Gordon recounts a visit to the doctor’s office for an ear infection where the doctor felt the need to tell her that she needed to lose weight. This is insulting and a frustrating microaggression that I constantly deal with as well, but there also can be dire health consequences to focusing on a person’s weight at all costs.

In Gordon’s podcast “Maintenance Phase”, which she cohosts with Michael Hobbs, she talks about how one has to have a BMI (Body Mass Index), which is the standard way of measure how fat someone is, of 17 or below to be diagnosed with a mild eating disorder per the DSM-V (Cost & Mehler, n.d.).

These oppressions compound when one has a multiplicity of these identities. I’m a fat mad trans man for example. At the same time, I have a lot of privileges. I’m white and insured. Still, it is not easy for me — it’s exhausting.

It makes me think then, that this system is probably not easy and not good for most of us. It only benefits the super rich, who have access to whatever medical care they need and profit off of the system through investing in pharmaceutical and insurance companies.

It’s time to take it down for the benefit of all of us. Even if you don’t go to the doctor regularly now, illness may strike you, you might get into an accident and certainly you will get old. You’re going to want competent medical care then. It’s life or death — which we all fear equally.

References

CDC. (2016). CDC FACT SHEET: Today’s HIV/AIDS Epidemic.

https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/todaysepidemic-508.pdf

Cost, J. J., & Mehler, P. S. (n.d.). Level of Care Considerations for Severe and Extreme Eating

Disorders. Eating Disorders Review, 30(1). https://eatingdisordersreview.com/level-of-care-considerations-for-severe-and-extreme-eating-disorders/

Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment

and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113

Whitaker, R. (2019). MAD IN AMERICA : bad science, bad medicine, and the enduring

mistreatment of the mentally ill. Basic Books.

Working Together to Reduce Black Maternal Mortality. (2021, April 9).

https://www.cdc.gov/healthequity/features/maternal-mortality/index.html


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