What You Don’t “Get” about Mental Illness

My friend’s simple but brilliant device for communicating his current state to those around him. He has many more ideas that could transform the mental health system, if only people would see beyond his symptoms and be willing to listen.

Disclaimer: I’m tired of putting disclaimers on my stories but this one needs one.

First, and most importantly, after my friend read this, they made two requests: 1, to be identified publicly as Tim Clemans, and 2, to be referred to not as “he/him/his,” but as “they/them/theirs.” I pledged to rewrite this piece with the proper pronouns even though a printed copy has already been circulating Fairfax and I can’t remove the mistake as easily.

I thought I would also take the opportunity to rewrite the piece itself so that it’s clearer, easier to understand, and less “crazy,” perhaps putting some of the parts I am more afraid of back into the box. I cannot do this. I am sure I will write another piece someday, but I lack the capacity to do this now. But my fear of being judged for this piece is still present.

It is terrifying to put something out into the world publicly that speaks to mental illness. It is a deeply stigmatized experience. When I went through it last year, I had hoped for a clean recovery story that could reassure everyone in my life that it was a one-time thing. This experience, however, sent me to a place of significant instability that I have been struggling to come back from.

Even writing this disclaimer is hard. I feel compelled to “explain” my mental illness, to take responsibility for it, to promise that I will “recover” from my traumas “so that they are not so easily triggered.” But then my brain reminds me that the only thing that makes my state an “illness” is the fact that it has been defined as such.

A trigger is like an allergy: Plenty of people can’t eat peanuts, but we’ve stopped stigmatizing that; instead, airlines stopped handing out peanuts on airplanes. Most people bleed when they are knifed, but we don’t give this a label or blame stabbing victims for being weak; instead, we make it a crime to do this to another person. While the fact that my experience is a minority one means that it’s on me to communicate my needs to people who don’t share them— a skill Tim is teaching me — it is just as critical that people listen. We have choices as a community: to adjust our ways of being so that everyone can thrive or to decide that the lives of those who aren’t thriving simply don’t matter. I can’t make this choice for others, only to acknowledge the limitations of my capacity as a human to change myself to fit what others have decided we all should be.

So, therefore, I’ve changed Tim’s pronouns but almost nothing else. What’s new is in italics. I can’t control how anyone will react to this piece. In the broad scheme of things, after all, it’s a peanut.

Yesterday I visited a friend in the psych ER at Harborview. They were in the same room I was put in for a few brief hours last February when I had what is politely termed a “nervous breakdown,” which was coded formally as as brief reactive psychosis with marked stressor, and which manifested as me babbling rapidly about robots and aliens and angels and voices until I finally got to a place where I was seen.

What was that marked stressor? What was the thing so impossible for me to confront that I created an entire delusional world in my mind, vivid in both my nightmares and hallucinations in waking life, that I could not let go of until I sat in the waiting room of the ER waiting for a triage nurse to pay attention to me, until my flesh-and-blood brother sat down and put his arms around me?

“She doesn’t believe me,” I sobbed, not knowing where the words came from, unable to stop them from flowing out of my mouth along with a wet river of snot and tears. “My mom doesn’t believe me.”

I believe this was about the fact that I had just come out of the closet as gay at age 33 only to find that a number of people would refuse to believe it is true — most essentially, my own mother. I believe this was about the fact that there is perhaps nothing more painful than choosing to leave the reality you can share with the human who brought you into the world, and nothing more impossible than staying in a reality that labels your experience as unreal.

To stay in a belief system that denies your reality is to lose your grip on reality altogether. It was not my experience that needed to be changed; it couldn’t change; facts are stubborn things. It was a belief system based on the delusion that anything but straightness is a disorder. What does this say about mental illness? What is this classifier marked primarily by pseudoscience, supported with pharmaceuticals that often do more harm than good, surrounded by “professionals” who feel helpless to treat what they cannot understand?

Psychosis is defined, simply, as not participating in consensus reality. It is when you perceive the world in a way others do not, have not agreed to.

Psychosis, therefore, has been used as a political weapon throughout history. People who tell truths we don’t like can be put away as “crazy.” Trans kids have “gender dysmorphia.” Gay people are “confused.” Government employees who dare to speak up about the dissonance between what their bosses are saying to the public and what they are doing behind closed doors are just, mm, you know, nuts. Mental hospitals serve as sanctioned concentration camps that have the added benefit of making you actually insane even if, when you arrived, you were simply holding stubbornly to a truth that others dismissed, like my great-aunt whose family tried to put her away for saying “things” about her husband instead of allowing her to get divorced.

Power holds tightly to its version of reality, even when it is wrong.

Given how distressed people on the internet have been about whether a dress is white-and-gold or black-and-blue, or hearing Yanny vs Laurel, and how much culture we’ve put around the stress of political conversations at Thanksgiving dinner, it seems safe to say that we humans are consensus-seekers. Sharing a view of the world, whether it’s religious, political, rooted in identities such as race and sexual orientation, or cultural and linguistic, is a deep bond — so deep, in fact, that many cultures have made it a capital crime to depart from the collective beliefs (apostasy).

But I hope this definition is also troubling, given that we live in a world where some perspectives are deemed credible and others not. Parents happily cheer on the “crushes” their hetero toddlers have on one another and brag about how their child “knew” from age four that they wanted to dance. They turn their lives upside-down to support those children’s dreams, and we approve, but parents and the magazine columnists they seek advice from wring their hands over whether kids who state unequivocally that they are gay or trans or have some other “invisible” difference really know their own realities well enough to say so, or if perhaps they should not be permitted to say such life-altering things at a tender age.

The fact that the dress “is” black-and-blue still does not allow me to see the image of it as such, in any light. I have done everything in my power to see it differently. I have landed in acceptance of the fact that my perception of the photograph is different from that dress in real life. But no one can tell me what I see. Or who I am.

But this essay isn’t meant to be about me. It’s meant to be about the people I met yesterday in the psych ward, the people whose stories I’ve met in books like A Kind of Mirraculas Paradise, the people from oppressed communities of all kinds who are speaking up, claiming authority over their own experiences, for example: He raped me. It wasn’t, in his words, “a night of drunken sex.” On my end, it was rape. If it was rape for either person, it is rape.

We are all connected, and our greatest responsibility to one another is to see and believe others when they tell us what they are experiencing, whether we experience it the same way or not.

“I don’t perceive it that way” is not a trump card. Men don’t get to tell women that behavior isn’t sexist, and white people like me don’t get to tell people of color that our behavior isn’t racist. We of course know our intentions, which may be kind and humane, but if our intentions are really so and it is simply a matter of not-knowing how our behavior lands on others, then we will be willing to accept their truth.

My friend who I visited is just beginning to wake up to this. They have spent much of their life fighting to be seen and heard and to have their basic needs met. They’re only able to get stable housing and mental health treatment when they’re in crisis, so, off to crisis they go, again and again, demanding something better and not getting it. They are still fighting, and they still get angry enough to become a threat to themself or others sometimes.

But this person, with the few resources they have, is doing something so many people are unwilling to: leaving the prison of their own perception and actively learning how to listen to and communicate with others. They have devised a brilliant system for helping people who don’t know their triggers, or how to help them when they do get triggered, to notice and to make informed choices so that they can stay okay. It’s a lot of work for other people, but it’s also a lot of work for them. They are doing the parts that only they can do, and I’m so thankful that there are people who are willing to do their part to help them out.

Even though I am 15 months out of my own hospital visit and many months healthy, there are moments when someone does a thing that wouldn’t trigger someone else and I find myself disappearing further and further from their reality because mine will not let go of me.

A few nights ago, I got into a car with a driver who turned around and offered me a drink from an open beer bottle. I began to panic––I’ve been in extreme danger before due to being in cars with drunk drivers, and someone close to me had a DUI so bad a few years ago that it’s a miracle she’s alive. The first time that I woke up in a passenger seat next to someone slurping from a champagne bottle, I screamed, fell back asleep, and woke up later that night to my body being sexually assaulted. The second time, the driver — my then-fiance — literally passed out at the wheel as we were rounding a cliff, almost killing us, then laughing at my terror. In my last car accident, I was sober as the light of the desert day, and it didn’t stop me from rolling over and coming to upside-down in the middle of nowhere, unsure of whether anyone would find me.

But the people around me acted like it should be no big deal; he was sober, they promised; this is normal; why are you freaking out; get back in the car. He came at me angrily, as men with bruised egos often do, not content to let me simply take a Lyft, needing me to see the world as he did, see himself as he did, as sober, ok to drive. The more they denied my own fear, the deeper into it I went, until finally I was breathless in a panic attack on the sidewalk, sobbing and shouting, reliving every one of those fears and traumas at once, with just as much intensity as I had the first time.

I didn’t start to come back until a friend bothered to believe me and explain to the others what was happening. “This is real for her,” she said. They didn’t have to share my fear for my fear to be what I was experiencing. As soon as she heard me, I could breathe again. I started to come back. I finally got to where I could say: I am not getting in the car. I am not stating whether he is too drunk to drive or not. I am stating that I am not getting in the car because I am afraid. You may make your own choices. I assert no authority over your reality. I give you no authority over mine.

That was all I needed: To be believed.

I am still, deep down, terrified that people will not believe me, that they’ll decide I’m crazy and abandon me. We are social creatures; we cannot survive alone; we either hold each other through it, or we perish.

Yesterday in the ER, another patient came to say hello. I do not know what my friend and I did to trigger him, but suddenly he began to back away, waving his hands in front of his face. He said “pleasedon’tsmileatmedon’tsmileatmedon’tsmileatme.” For some reason, my first instinct was to smile at this person in crisis — I guess it’s how I normally try to communicate that I am a safe person — so I had to force the smile off my face and turn away. He turned to face the wall. “I’m sorry,” he said. “This is real for me.”

And I believe him.

It is not easy to show up for people who are experiencing mental illness. But it is worthwhile. As I see others cope, I gain greater awareness of my own disorders. I can see my PTSD on the face of it: an action that might set off a single fear on its own becomes a spiral that draws a person deeper and deeper into fear until they are re-living their nightmares. I can see how this can spread into something deeper, an exhaustion from always having to hold the borders of the self and its truths against a world that denies them, manifesting in a weakness that turns minor injuries into gaping wounds. I think about a reaction I had mere nights ago to seeing a photo on someone’s Instagram feed; it should have caused a tiny flinch, if anything, and instead I had to unfollow the person, sit in the car, hold my heart, and breathe love into its pain.

I am thinking about what my close friend said to me, later that night, when the panic had dissipated and she was helping to rub its leftover tension from my jaw: “It is real. You deserve to be seen. You also get to heal.”

The healing starts from being seen.

The healing from psychosis — from being alone in one’s own mind — begins with having someone be willing to walk right up to the edge of it with you and say, “I believe you.”

Their faith is the bridge that connects my reality to a larger whole, one that they, at that moment, have more access to than I do.

That is all it takes.

It should not be that hard for us to offer this gift to each other. Every person is the sole and ultimate authority on their own experience. You are not living in their bodies, seeing the world through their eyes. At best, all you can say is that you do not share their experience. You do not share their perception. This does not make yours authoritative and theirs faulty. It makes them different. It should not be more difficult to accept this about gender, sexuality, or emotions than it is to accept that someone is allergic to something you are not, or that you prefer different flavors of ice cream. It is the most human thing there is.

Reality is nothing more and nothing less than the sum total of all our experiences. Which means that it isn’t merely the majority, or “consensus,” that counts. If a single person is left out, there’s no consensus at all.

I don’t know why it is so difficult. I think it might be because we’ve all been taught, to one degree or another, to shave off our identities in favor of compliance with consensus. I notice that this challenge of accepting others’ realities comes not only in confronting extreme cases with people who we say are mentally ill. It also applies to the realities of people whose experiences have been marginalized.

I am angry right now with a friend who considers herself very wise and believes that she knows that the cause of her sister’s suffering is that her sister is gay and closeted. She is for some reason impervious to my pleas that she not claim authority over her sister’s life. Her sister is suffering and appears to be hiding something — that you could say. But to claim that you know another person’s innermost desires? Not cool. Most of us do not know them ourselves, until we are brave enough to open that box.

This is a plea for us to honor one another in spirit and in language, to leave space for the journey each of us is on.

I think about the word “transgender.” “Trans+gender.” It seems more inclusive than the old words, like “female-to-male,” that I understand, because trans people have told me, are faulty for assuming that they ever “were” the gender they were assigned. It’s a word that bridges perceptions.But this word is now falling apart, too, just as did the ones that came before. Trans women are women. Trans men can be mothers who give birth through their own male wombs. Who is the “trans” part for, if the people we label as such don’t see them as changing at all?

Consensus reality continues to evolve as we restore our own capacity to recognize the realities that have always been here. Our perceptions, and our language, evolve along with it. It wasn’t “gay-related immune deficiency,” it’s AIDS, and anyone can get it. I’m not “struggling with same-sex attraction,” as the faith I was raised in defines it, I am exuberantly gay. I’m not “psychotic,” I am real in worlds that say I am impossible.

That felt good to say, so I’m going to say it again.

I am real in a world that says I am impossible.

I am struggling to communicate to you what it is really like and I am afraid you will not hear me unless I am a mess, but this is not my fault, it is yours — it is the fact that you wait until I am breathless and heaving on the side of the street, doubled over in pain, making a scene, to acknowledge that what I am telling you is my truth. You must stop and listen. We all must stop and listen before it gets this bad, or it will continue to get this bad.

I am a gay, femme woman with a powerful mind and heart. I am fiercely creative and have a capacity to see the invisible that few people share. I perceive systems as wholes and parts simultaneously; I see patterns of emotions and behavior; I can create spaces that allow more of reality to emerge and give it language that allows reality to be shared among people who might otherwise have different perspectives. I can zoom in and out, mapping workflows from beginning to end and surgically removing the blockers we didn’t notice from far away. I learned to read before I turned two and was removed from a classroom in second grade for completing my homework too quickly.

Not crazy enough? Okay, try this on: I have died and come back to this world many times, and I remember and can describe what I experienced when I was gone. I recognize these experiences as individual spiritual truths that are part of a larger whole but give me zero authority to speak to what is life after death for other people. I am able to hold my boundaries because I am able to hold yours; I am confident because I am humble. I am only confident when I am humble. I still have to work to be humble sometimes.

I do not need your pity, which is nothing more than a self-righteous form of judgment. I never have. I needed to be heard and believed. I do not need you to tell my story for me, filling in the gaps of your own misunderstanding with assumptions that fit your world view to-date. I do not need your help to become more like you, which is a thing I do not wish for. I do not wish to compete with you or to win; I recognize your truths to be equally valid and important as mine. I wish only to understand you and to be understood by you across the vast canyon of our different experiences.

I will ask you a question in the language my friend uses right now in his negotiations with caretakers: Is it ridiculous to ask that you simply listen?

I am real. Every thing I have seen and heard is real, whether you share that experience or not. And because I know this, I can hold the hand of a person who was once my enemy as they walk, shaking, down the halls of an emergency room, experiencing things I do not understand. We can laugh about the time when they made my life a living hell.

They ask me gently to Tweet for him. I tell them, gently, that I can’t right now; I need to take a little time; yesterday was harder than I expected and I woke up at 3 am with a fear in the pit of my stomach I haven’t felt since the morning I ended up in that ER myself, staring up at a fluorescent light covered with blue-and-white plastic to make it look like clouds.

“People don’t know what it’s like,” they say, describing the nightmare that is Harborview. “It’s scary in there.”

By contrast, they can’t say enough good things about Fairfax, where the staff are paying attention to the laminated Crisis Profile they’ve attached to his belt loops (later to a more accessible place on their torso), a system they’ve created that they plans to digitize when they getout so that all patients can communicate better with their providers and people like them can end up in crisis care less often. They’re doing group work. People interact, just like they did at the Tent City where they briefly stayed, supporting each other.

“I started shaking violently,” they tell me, a symptom I’ve witnessed before that indicates some emergence of deeply buried anger and trauma, a symptom easily treated by going for a walk instead of being trapped in a room, allowing things to begin working themselves out, “so I turned my card to red. The other patients noticed first, and they advocated for me. They went to the nurses and told them my card was on red, so I got the treatment I needed.”

They wonder aloud. “It’s a shame this place wasn’t around for Timothy McVeigh. If he’d had this treatment, he wouldn’t have done what he did.”

I resist this idea. We don’t know what would have happened. But I think my friend is probably right.

“The patients here are brilliant,” they tell me. “I love how we are all helping each other. There’s a guy who went to Stanford. Another who’s in a six-figure job, but he has so many great ideas.”

I say to him, “Mental illness is a part of who we are. It’s not all of who we are. And in some ways, it’s a gift.”

“You have to write that,” they say. “Please publish it on Medium today.”

At first, I say no. I tell them I’m working on something bigger. A book, written from a place of sanity, in a language people can understand and might be more willing to read. I describe this state of being as “raw data,” which few people can understand. “I want to make a data visualization instead, you know? So that people can get it.”

They swiftly let it go. Unlike most people in my life, they make their demands very clear and then let them go the moment I say no. There is no tug-of-war of persuasion or negotiation. They states their needs clearly and let me state mine and we both move on with no connection lost, only gained.

They sign off on our phone call with the words, “I love you.” I say, “I love you, too,” and I mean it.

This is meandering; this essay will not be my best work. I am scared, knowing that I’m writing it from a place of slight instability and could be judged for it, knowing that it is essential that this instability be seen, witnessed, held, and that I have no control over whether people choose to do that or instead see only my mental illness and not what I have to offer.

I am publishing it anyway, and now, because my friend asked me to, and because I realize that his needs are my needs, and that sometimes I cannot be the bridge to your reality; sometimes, I do need to release my raw data so that it can find someone who’s able to translate it further, even if that person is simply my future self.

They are still in there, fighting to be seen for who they are: A person whose experience is not like ours. A person whose experience is 100 percent real for them. A person whose experience must be treated as valid on its own and integrated into the reality we share, not merely imprisoned in hospitals or jails or religions or belief systems that label him as disposable and decide, if passively, that a coffin is the only place he belongs. A person who has immense talents to offer the world. A person with a beautiful mind, a hacker extraordinaire, and a beautiful heart. A person who is actively listening to women and coming to terms with their own participation in rape culture, they tell me, because of the article I posted on Medium, while also thanking me for, at their prompting, moving a trigger warning and explanation to the top. A person who is helping me become a better person every day that we interact, less than three years since I nearly took out a restraining order on them at the urging of the police department that is now also on their side. A most surprising and unexpected friend, a most inspiring and beautiful turn of events.

This person, once my enemy, now my friend, is a person who, in their humanity, in the sanctity of their own experience, in their desire for dignity, i their need to be seen, is just like the rest of us.

They will not get “better” and rejoin us in this reality we share, where their gifts and talents and heart are so desperately needed, until we choose to see them and believe that they, too, are real.

We all are real. We all are needed. It’s time for all of us to adjust our perception of reality: Not just those we’ve deemed “ill” because their realities reside outside our own. We must all expand our perception — especially those of us who have the privilege of being seen and held in the stability of social consensus and therefore can expand our worldview with the knowledge that we will survive the shift, a knowledge that I did not have when I came out, a knowledge that my friend is still seeking with every pay phone call to the outside world.

We can heal our reality. All we have to do is believe each other. All we have to do is respect the authority of each person over their own experience. That is all it’s going to take.

Please believe me.