Ah, what then?

The last hospital I spent time inpatient at treated all of their patients with significantly more dignity, allowing us to shower in our own bathrooms, for example. The biggest difference for me is that the other hospitals used eating with the group as a privilege, and if you didn’t attend therapy or misbehaved you’d have to eat in your room. The last hospital did not use food or social interaction as a reward or punishment in any way. The therapists also just spent time with the patients, instead of interacting with the patients solely in therapy settings. When we’d be between therapies, we would all be in the group area, and there would be two or three therapists in there interacting with us and treating us like human beings. That never happened at the other hospitals. These are all important factors in making patients feel that they are valued, and that they have agency in their recovery.

In a treatment style that, quite honestly, has very little to do with what the patient wants, as psychiatry often does – especially for patients who are ill enough to need to be inpatient – the most important factor in making sure that patients recover is to teach them how to have agency in their recovery. Psychiatry often takes away a patient’s agency, but that is the opposite of helpful. Yes, sometimes people go kicking and screaming inpatient, but once they’re there, they should have a say in how they’re treated. They should not be manipulated or forced into treatments they do not understand or want unless there is absolute necessity, and what goes behind that judgment call that is far too poorly developed.

Patients are often called on to make medical decisions for themselves while they are heavily medicated and unable to understand what they are being told; it’s happened to me. I’ve been given PRNs when I wasn’t asked for consent until the medication had already been drawn into the needle and they were prepping my arm – and when I said no, I was treated as if I had done something wrong. I’ve consented to an injection of Haldol that resulted in horrific side effects for five days afterwards – because I was explicitly told it would not cause side effects.

In my various other treatments, I’ve generally been presented with at least two different treatment options, given the pros and cons of each, given general advice, and then I was called upon to make the final decision. I have never experienced such a phenomenon in psychiatry. With psychiatry, I am evaluated, given a prescription for a medication that is often not explained to me at all, and sent on my way. The only discussion is of symptoms, not of solutions. I am deemed incapable of making such a determination myself, but why is that? It is because I have been intentionally under-educated on the topic of medication management, in a way that is simply not standard in any other field. Whenever I have wanted to even find out about the intended effects of a medication I am on, I have generally been forced to seek out answers on the internet, not from my doctors.

Giving patients agency and treating their decisions with respect is a basic human right. Beyond that, it is good treatment policy. It will help patients recover. Patients that take an active part in their recovery are more likely to stay recovered. Patients who feel that they have a responsibility to care for their own well-being, that what happens to them is a direct result of how they behave, will make more healthy choices.

I do not trust the psychiatric community as a whole because I do not believe that the general psychiatric community has the understanding or the desire (or both) to effectively treat patients who are viewed as having severe mental health problems. I believe that these patients are viewed as hopeless cases and are often viewed as incapable of caring for themselves. But the truth is that they have been taught not to care or themselves by the very culture of the psychiatric community that is supposed to be helping them. They have been taught that they are not responsible for their behaviors. They have been taught that they have no control over themselves. They have been taught that they are powerless. Because the system makes them powerless, over and over again, and tells them it’s what’s best.

Mara Passio

Although we’re apart, you’re a part of my heart

Long after he left me for good, I’ve spoken with him. I’ve cried on his shoulder, long after I knew that would never happen again. I’ve lain in bed with him in a home he never entered.

These visions became a torment I did not understand. I called them flashbacks. But I was not reliving traumas, not exactly. I was living new traumas, or new versions of old traumas, and I didn’t understand how it could be possible.

I began to fear the space between sleep and wake. A space I didn’t realize not everyone even experienced. Before and after sleep I’d lay my head on his shoulder again and listen to the horrible things he thought of me. As I’d slowly fade into full sleep, I’d absorb his words and feel his chest rising and falling under my cheek.

Sometimes even I wouldn’t realize I was in the space between. I’d have terror-filled visions on my commute home of him getting on the train and casually standing beside me, ignoring me but invading my safety nonetheless.

When I consider my recovery from the gaslighting I experienced at his hands, I think – I know – that these unwelcome visions just furthered the gaslighting for me. The purpose of gaslighting is to convince the victim that they are insane, and I truly believed that, if I hadn’t been insane before I met him, I was absolutely insane after. I believed he had caused me to detach from reality.

Thinking about these times makes me so angry. I think about how, if I had only known that I had narcolepsy, if Ihad only known, I might have been able to make peace with these horrific visions. At least I would have known that he had not succeeded in driving me mad. It would have helped to know that what I was experiencing was not a result of anything he’d done to me, but a result of a neurological condition. Sure, I was probably hallucinating him in particular due to PTSD from the abuse at his hands, but the hallucinations themselves were not caused by his torment.

I fear constantly, though, to this day, that I will be visited by him again. I still see him, on occasion. I still fall asleep sometimes convinced I am wrapped in his arms. Sometimes I myself can’t tell the difference between a flashback and a hallucination, because sometimes I can’t remember if something had happened before or not. Narcolepsy has blurred the lines of reality in my post-traumatic stress disorder, and that is a terrifying fact to behold.

I don’t know if I’ll ever have a life where I know I’ll never see him again, even in my dreams. On a level I am resigned to it, and on another level, I am angry, incredibly angry, and afraid. I feel helpless against the half-sleeping dreams that plague me, and I do not know if I will ever be free.

Mara Passio