You can feel it, the unshakable gaze of someone who finds themselves feeling as if they know you, looking at a shell of what you aren’t. I knew I couldn’t get better here, that I needed to sink away slowly. The expectation and the fear, that I would lose control, if I stopped taking medication was everywhere. My mom, my doctor … so many others I was afraid to converse with on this. But what if I didn’t take it? What if I stopped? I didn’t want to talk to the doctor because I knew he’d prescribe more and more, and I’d get sicker and sicker. Was it bipolar or an amphetamine induced psychosis? I knew I had to get off the stimulants first, they were the precursor to the disorganized thoughts, the hypersexuality, the mania. I knew without the downers, the uppers were dangerous. My body releasing and suppressing dopimine, had earlier fought to switch from an anti-psychotic (the most expensive one they could prescribe) to a different kind of mood stabilizer. However, on it’s own I discovered that epival had me exhausted and drifting between realms. I heard music, like an orchestra so faintly while I was sitting at my work desk. In the car, I sat with the rain pounding down all around me and I could feel my ghost, and I cried because we both knew we shouldn’t be in contact, this was too tangible. I skipped my appointment, I let the drugs sit untaken.
The biggest source of power in these situations is the fear of the unknown, and we’re so desperate and so afraid of ourselves that we’ll take a strangers wisdom over our own. The mental health care system can work, but not for me, not without my autonomy. I didn’t have the strength or the words to explain how or why, but I did the only thing I could for myself, and that was take control of what was happening to my body, to stop taking the pills. Multiple friends and colleagues recognized the path of self-pity and the fact that I was fairly well before all this. Maybe had a few depressed dips, but that was natural grief. Maybe I sniffed a few ghosts, but that wasn’t insanity.
The health care systems slurps you up like a statistic, robs you of all your humanity. Simple things, like being reduced to a series of small objects by which to care for yourself, if you had them at all. They were out of soap, out of toothbrushes, always something we needed and couldn’t have. I read at one point about how our wardrobes and our make-up and whatever it is we use in a day to get ourselves ready before we go out into the world is like an “identity kit”, we use it to craft ourselves, everyday, everyone does it, in some form or another. Stripped of access to these this, we’re stripped of our identities, we become a mess as every single insecurity is pulled out like an ingrown hair, infected and full of puss. You’re flipped inside out. My soul dancing over the skin of my body.
When I was in the first hospital they treated me like a liar. When I cried that I couldn’t sleep because the sound of the machine hooked up to the person beside me sounded like the ventilator I listened to my first boyfriend died to. I tried to act like it was ok, like I could handle it, but they touched and moved all my things into this room without talking about it to me first, tossed these objects of my identity around like they meant nothing. Did they oggle, at my notebooks or small stuffed animals? Did they read them? Did they laugh? It was humiliating, the fact that I’d been touched like that.
I’ve come to understand more of how my mind works. I rely heavily on external prompts and “thinking outside my head” – I used objects as a way to remind me of things, to help me sort my memories, my executive functioning had at one point been assessed to be in the thirtieth percentile and this is how I coped with that. I kind of vaguely knew that then, tried to ask for help because no one was addressing my ADHD, just telling me to take sedative after sedative, me, wanting to say no and afraid of what they’d do. They, in essence, touched and re-arranged the very insides of my mind. They let me leave to go visit my mom without telling me what they were going to do. They were just waiting for me to go, afraid to even talk to me. I was something to be feared, I was certainly not treated as human.
So to return to and depend on this system and these people scared me more than anything. I have not found a doctor who I can be honest my whole self with sense. Since these people would push through any identity or narrative I had for myself, I had to withdraw from treatment, function at a level lower than I was used to before my illness because treatment to most people meant getting rid of this experience and what it meant and why it happened. I knew why, even if I couldn’t put words to it, this happened.
I purged myself, of all that had been holding me in, the cages around my soul crumbled. When I stopped taking those pills, I waited for clarity and it came in so many ways, as I understood myself beyond the limitations of the sexuality and the gender which had been assigned to me. It would take a long time to find my words, to explain what happened. And in that time without words I suffered. While I sought understanding I stumbled into far too many unsafe spaces and was hurt, over and over again, reminding me of all that I had bottled away leading up to the break, the fracturing, the shattering of who I was.
I’ve finally come to a place where I am open to talking to doctors, that I might have the strength to defend and own my autonomy, but to find a doctor who will honour my gender, illness, disability, lifestyle, spirituality/religion, trauma and autonomy? I really don’t know how or if it’s possible.
I find it unfair that I needed to remove myself from systems of support in order to know myself, and that the path to treatment and assistance may be blocked by ignorance and bigotry. I rely heavily on my self-literacy and my constant awareness of my mental states, on my ability to catalogue my experiences online as a way to manage myself. I have overslept to avoid manic states, using teas and stimulants like coffee as a way to attempt to regulate my moods and deficits on my own terms. It is most certainly not ideal, but the choices should not between health care or respect; wellbeing or autonomy. And we live in a society so afraid that they’ll neglect to help you in any way or worse, hold you up for mockery. I didn’t even have to do or say anything before people who choose to target me online out of hatred were sending me death threats and hate mail. My mere existence and freedom was a threat, to what, I’m not exactly sure, unhealthy paradigms?
I, as an individual, have not failed. I have persevered and survived deep mental illness, multiple assaults, as well as general erasure and discrimination (getting turned away from physiotherapy, for example) in our society; my ability to work on creative projects hindered by a lack of access to mental health resources while I coped with untreated injuries from my assault and PTSD. What is unjust is our ignorance and fear and stigma that made me to afraid to access help, to know if I sought help, I might lose freedoms; to be physically and financially incapable of accessing the spaces and supports I needed to get better. What is unjust is the year I spent working a labor job in near constant pain when I should have been healing my body but was instead struggling with survival. I was bitter but also wanted constantly to deny the severity of it, to lie and say it was ok, to say it’s over, I’m better, etc.
It’s not over, and I continue to get better.