Am I “Crazy” Too? My Glorious Weekend With People Dubbed “Insane”
Part 1: Introduction
A few weeks ago, a friend — one of those online buddies I’d bonded with but never met in person — tagged me in a Facebook post about a conference here in Boston: Alternatives 2017, happening from August 18-21. She said she was tagging her “mental health advocate” friends, in case they wanted to attend. The conference’s focus was peer counseling for people with serious mental health struggles: people who, typically, had landed for at least brief periods in psychiatric hospitals or prisons. “Peer counseling” meaning advice/support/discussion with others who have battled mental health issues: an alternative to the usual assumption that effective counseling comes only from standardly trained professionals who often have no personal experience coping with the issues at hand. I was intrigued. But.
There’s usually a “but” with me, and it often involves not identifying with whatever group is involved in the activity under discussion. It felt odd to be considered a “mental health advocate” when I’d never thought to see myself that way. True, I’m very open about my various anxieties, to the point of publishing an essay about trying and then abandoning Klonopin, a controversial anti-anxiety drug. My published writing and social media posts create an image of a highly nervous, obsessive, death-fearing soul. Far from hiding it, I lean into it, reveling in its juiciness and the aspects that might make people laugh. Calm people are a little bit boring, right? I make no effort to seem like one of them.
And yet… maybe there are limits. I’d never been in a psychiatric hospital or prison, and I wasn’t sure I wanted to spend a whole weekend with people who had. Or… let me reframe that. I was extremely happy and even intrigued to spend time with them. I just wanted everyone I met to realize one thing: I was not one of them. I was just hanging out, exploring the atmosphere. This movement of peer counseling for severe psychiatric issues had its own buzzwords and insider jargon, and, when I heard an unfamiliar term, I wasted no time before asking what it meant, explaining that I was just dropping into the conference because I lived in the area, a friend had told me about it, and I decided to check it out because I’m a curious person. I realized eventually that I was far from the only participant who’d never experienced psychiatric hospitalization or a diagnosis of severe psychological difficulty, but my overall impression was that most shared those experiences in one way or another.
Part 2: Conference
I arrived at the conference on Friday evening, August 18. When my friend had invited me on Facebook, I had said that the conference sounded interesting… to the point where I might check it out if it were free. I said it in a lighthearted way, never expecting an offer to attend the conference for free. But someone from “Healing Voices,” a film that aims to elucidate and de-stigmatize serious mental illness, invited me to do just that in a Facebook comment. Not exactly a formal fellowship offer, but I was curious enough about the event to stop by and see if the invitation was serious.
After some discussion at the registration desk, the Healing Voices people confirmed their invitation, and I was told I could participate in all conference activities except meals. I’m usually that schmo who gets stuck paying full price while everyone around me figured out how to score a huge discount… so I was excited. Maybe I was meant to hang out at Boston’s upscale Park Plaza Hotel, right near the flowers and ducks of the Public Garden, and learn about severe mental illness. I’d explore psychiatric issues much more serious than my comparatively minor turmoil about death’s inevitability and anxiety over life’s daily challenges.
It all began Friday evening with an orientation for newcomers. I arrived at this event late since securing my spot in the conference took a while of asking questions and showing my Facebook invitation to various people, but I caught a sharing activity at the end. A long line of people waited for the microphone at the front of the room so they could share a bit about themselves and their hopes for the conference. The most common word that struck me was “recovery.” Addictions to hard drugs and alcohol, debilitating conditions that landed people in psychiatric hospitals, potentially fatal eating disorders… people shared their hopes for recovery.
A pair of women struck me deeply. They walked slowly to the microphone towards the end of the event, holding onto each other’s arms. It was hard to say how old they were: they could have been in their 30s, 40s, or 50s. I have a hunch that they were youngish but weathered, but I’m not at all sure. One was extremely obese and had trouble moving forward, but she took her friend’s lead. The other seemed to have vision problems when she walked, but when she spoke to the crowd, I wondered if that was a false impression.
She told everyone that she and her friend were living in a psychiatric hospital, but they managed to get leave to attend the conference. They hoped to leave permanently and move to Massachusetts, and this conference was a way of testing possibilities. “I want to look into ways we could thrive here,” she said. I was amazed at the clarity of her expression, given her hesitancy in moving up to the podium. She kept gesturing to her friend, who did not discuss her own thoughts, though she kept nodding supportively. At gatherings like this, seemingly small but memorable details are what stay with me. I continue to wonder about those two.
A tone of questioning the standard mental health system pervaded the comments. “We can help ourselves by counseling each other; standard mental health professionals are overrated and often cause more damage than good,” was a message I heard, over and over, expressed in various ways. Many markedly distrusted the medications they were prescribed: they often produced debilitating side effects that ruined their health and functioning.
They were angry at being stigmatized by the mainstream medical model, and they greatly preferred seeking help from others who shared their lived experience with severe mental illness. “Lived experience” was a kind of buzz phrase here. Many seemed to resent getting forced “help” from professionals who had no personal experience navigating psychosis, bipolar disorder, etc.
It was understandable, but the other side is also understandable at times. Throughout the conference’s many workshops and informal chats, many spoke about hearing voices — perhaps from outside of their own consciousness. Some saw some of these voices as coming from a spiritual realm; others sensed that fellow humans were speaking to them through radio waves, internet signals, or other technology. Of course, some assumed the voices came from their own minds. I am open to everything — including possibilities that go far beyond the hypothesis that the voices originate in the hearers’ own consciousness.
I believe in all manner of self-expression — and, for that matter, allowing external voices to express themselves through you, if that’s your interpretation. I see no problem with hearing or communicating with voices that do not originate from humans whose existence can be empirically proven. But. And it’s a huge “but.” Some heard voices that encouraged violence. More than one person discussed persistent voices urging them to kill their mothers. In cases like this, I would indeed advocate forced contact with mental health professionals. I support radical freedom until and only until it begins to infringe on others’ rights and safety.
For a while, I assumed that this gathering represented a complete rebellion against the mainstream mental health system: psychiatrists, psychologists, social workers, and the like… advocating a total shift towards seeking help from trained peer counselors with struggles similar to yours. But then I met many who loved their psychotherapists. And, though most seemed to recommend taking as few psychoactive drugs as possible, many were taking something because they found it necessary. As one woman explained to me, “This conference is about alternatives, but we’re not saying that no one can benefit from the standard stuff.”
It was a diverse group by most appearance measures, with some looking a bit messy but many others professionally dressed. Most seemed completely sharp, but a small minority kind of sat with vacant stares in the various talks. Amazingly, I didn’t see anyone get obstreperous or hard to handle… and I have seen this occasionally at other conferences that had nothing to do with mental health. The group was mostly white, but there seemed to be substantial black and Latino representation as well, and noticeable South and East Asian contingents. Tattoos were extremely common in both expected and unexpected places: on necks, legs, arms, and hands. I was told that around 600 people participated; they came from all over the country and also included many international travelers.
The activities I attended often had many from the Netherlands. They seemed unusually self-possessed and in control of their lives, but I’m guessing that stemmed from the simple fact that international travel selects for people who can plan for it, afford it, and handle the logistics. Much more difficult than popping over from nearby Cambridge, or even California.
Throughout the weekend, I caught several of the conference’s talks and activities. My Saturday started with a riveting presentation by a researcher/writer named Darby Penney, who pieced together several fascinating lives of people who had spent considerable time in a U.S. state psychiatric hospital, based on the contents of the suitcases they kept in their rooms. Penney’s subjects were complex, bright, feisty, intriguing, and, in all too many cases, held in the hospital unnecessarily, against their will, often for decades. In one case that particularly struck me, a spirited immigrant from France made the mistake of sharing with the wrong person that she believed she could read minds… and off she went, for several decades, despite her pleas to be released.
Next I attended a fascinating presentation by two engaging souls who hear voices that seem to originate outside of their minds. They both struggled mightily with the phenomenon for many years, and then, with the help of counseling and support from peers who have had similar experiences, they developed confidence and the ability to enjoy life and accomplish goals. One fascinating theme in their talks: they haven’t always told professional counselors and medical people the full truth about these voices, because they don’t want to be slapped with medications and restrictions that they know would only harm them.
Later that afternoon, I chose a group presentation by several people who had found themselves in prison but then found their way out. They were white and black, male and female, though they all seemed to struggle with traumatic pasts, and most mentioned addictions of one kind or another. Their goal was “recovery”: from physical addictions and from other behaviors that were landing them in prison. The audience — a large group who somehow managed to be a bit rowdy yet deeply supportive of the speakers — was ebullient. From discussions I overheard, it seemed that many surrounding me had also been in prison. One of the speakers mentioned several incarcerations in his past, and the thought of it all stunned me, to the point where my mouth opened and I said: “Wow,” quite loudly. No one else seemed surprised at all; they were nodding and calling out supportive words throughout the talks.
The message seemed to be that, once you find yourself in the prison system, it’s very hard to work your way out in a permanent way. Pretty much everyone in the room seemed to advocate possibilities other than imprisonment wherever possible — support and intensive discussion led by peers: others with similar experiences and legal infractions. Many spoke proudly of their years being “clean and sober” and received claps and cheers in response. I felt a bit like I had landed in a 12-step meeting: something I had long been curious to witness.
The people around me could tell I was shocked by all the stories, and several reached out, laughing, to slap my hand or wink at me. It was wonderful. I was an outsider, yes. For all my deep-seated mishegoss and internal hysteria, I’ve never come remotely close to landing in prison, and my main addictions involve horrifying thought processes, not substances. I’m guessing I looked like a wimpy little innocent white woman to many of my fellow audience members. But they got a kick out of me, and seemed to enjoy my interest. I feel like that’s one key to successful communing with people whose circumstances differ from ours: that they get a kick out of us when we reach out, and appreciate our desire to connect.
Sunday morning brought a workshop tailor-made for me: a woman named Emma Bragdon discussed her work with people whose mental health crises seem to coincide with true spiritual experience. Bragdon certainly doesn’t believe that all mysterious voices we can’t ascribe to a verifiable human being have spiritual origins, or that all psychotic episodes are glimpses into a mystical realm. She thinks we need to examine all possibilities very carefully, along with a team of other people who help us understand what’s going on. But I was thrilled to be in a setting where spiritual explanations were seen as a sane and even likely possibility, depending on the situation.
Think about it. If you’re open to potential spiritual realms and truths, it would be odd not to consider the possibility that real people roaming this earth might have direct access to them. And if some people do have this kind of access, it makes sense that their perception of reality might differ from those with no access to these realms. And… if you’re walking around with a sense of basic reality that differs from almost everyone around you, difficulty adjusting and functioning in the world seems highly likely, perhaps almost inevitable. Meaning… some instances of diagnosed psychosis, hearing voices, etc. might stem from spiritual sensitivity, not standard mental illness. This was my kind of presentation, open to all kinds of possibilities that I love to consider.
My next workshop shocked me simply because it wasn’t a disaster. It was billed as a class on stress management, but it turned out to be… yoga and Tai Chi. Oy vey iz mir: if I had known, I would have chosen something else. Pretty much every time I’ve attempted a class on movement or exercise, the instructor has gone ballistic, thinking that no one could possibly be as bad as me: as unable to follow directions, to raise my legs, or whatever. “Would you like me to leave?” I wind up asking. “Yes! Please do!” is by far the most common reply.
Sure enough, I didn’t really understand the instructors’ directions. There was one man and one woman, and they looked like the graceful, athletic types who normally shame me into the ground during exercises like theirs. You know what I always wish in these classes? That I could just stick around and try my best, with no nasty comments or attempts to get me to follow directions that are beyond me. And that’s just what happened! At various points, both instructors said that it didn’t really matter whether we were following their lead exactly: the key was to be in touch with our bodies, which could reduce stress and boost contentment. Yes! That’s always what I shoot for in a movement class, before I’m screamed at and ejected. This conference offered trainings on “neurodiversity,” and the gathering’s most central message was acceptance of all neurological and psychological types. Apparently that included even me and my weird coordination issues during a group athletic activity!
My sense of belonging continued during nightly hang-out sessions. Both nights I attended the conference, I hung out with groups of people I’d met there: the woman who had invited me (who I finally got to meet in person) and a few others. We explored our psyches, discussing our various odd perceptions and variances from typical ways of thinking and behaving. And we laughed and shared a bit about our lives, like new friends usually do. As always, I didn’t completely fit in. I’ve never been hospitalized for psychiatric trauma or asked to leave a school (banishment from exercise classes as an adult didn’t seem to count, though it certainly represented movement along a similar path). But I had deep, true fun, and what more could I ask from an evening, or any piece of my life?
Part 3: I Implode, And Share The Secret Of How I Feel
The real drama happened at the last formal conference event I attended, on “multiplicity and dissociative identity disorder”: in less formal parlance, multiple personalities residing in one body. I’d been excited about this event all day since I’d never met anyone who fell into this category… or at least who admitted to it. I’ve always felt certain that my body houses me and only me: one independent psyche. I couldn’t imagine what anything else might be like.
The session leaders explained that they are several personalities, all female, residing in one genetically male body, and that all the personalities consider themselves transgender. The various personalities have one overarching name that they use when one identity is necessary, but they are always aware of each other and never merge into one person. They were soft-spoken yet confident, sporting a funky dress on a lean, relatively tall body that most would code as male. They spoke in a clear thought stream, with no jockeying for dominance among the personalities, though they did announce once that a new personality was coming to the fore. They didn’t think multiple personalities living in one body necessarily represented a problem: this was simply one way of being in the world: a potentially rich, gratifying, and satisfying experience.
They divided the audience — a mix of curious “singles” like me and fellow multiples, maybe 10-12 bodies total — into a few different groups, depending on our interests. My group, which included me and several women who reside in one genetically male body (a similar situation to the session leaders, who bounced around among the different discussions) brainstormed about research possibilities in this area. Another group discussed potential social action to boost acceptance of this variation on human experience, and others bonded over their own particular interests.
The others in my group were genial and warm, vacillating between a kind of British-tinged American accent and a strong, cockney-sounding British one. In fact, they told me they had grown up in the U.S. They wore casual, masculine-seeming clothing and a short haircut, but said that their mother presented herself that way, and they all considered themselves female. I commented: “I’m sure you know that most would see you as one male at first glance,” and they laughed and said: “Male privilege. Gotta love it.”
Like the session leaders, they were bright and articulate, and were able to speak in a clear, easily flowing train of thought despite the different personalities involved. They also used one overarching name when it was necessary despite their multiple identity, which they described as several people interacting within one “system.”
We came up with several research possibilities. I shared that I thought qualitative research would be a great technique here: allowing researchers to plunge themselves into the daily lives of affected people and encourage deep, personal conversation that would elicit much more complexity and true emotion than short survey questions. My colleagues made the excellent point that past research often found subjects through outpatient therapists, meaning that reports tended to over-generalize based on a particular level of distress. Those who see outpatient therapists are unsettled enough to seek professional assistance. Multiples who feel they’re thriving on their own and don’t need help are not represented. On the other hand, neither are multiples in residential psychiatric hospitals. So… research has tended to overlook both the least and the most troubled cases.
We got along well, and I felt happy and pleasantly challenged when we ended the intimate conversations and returned to the large group. I was learning, growing, and expanding my sense of what might be possible for one body, one brain, one physical history. Me being me, I found myself wondering whether it’s possible for more than one soul to inhabit one body… and for all of those souls to achieve their own unique immortality and enlightenment after death. When I mentioned this question to my colleagues, they smiled and said they were very open to my speculations.
The workshop leaders asked each group to present their most important ideas. The group who had discussed activism nominated a genial, well-spoken guy to present (at least he struck me as one guy: I didn’t get to know him well enough to see through that veneer if the truth was more complex).
Then it was my group’s turn, and my colleagues suggested that I start off. I began sharing our ideas, but quickly became extremely nervous. I tried to power through it — I speak publicly quite often, and, though I occasionally have reactions like this, I hide them, and have been told by very honest friends and relatives that they didn’t realize I was anxious, let alone half hysterical. But this was bad, bad, bad. I felt just a few short steps away from crying… and crying while I’m on display giving a public talk is one of my largest phobias.
I could feel my body shaking. It felt inevitable that others were noticing my distress. I said: “Wow, I am so nervous. It’s not like me.” Ha, of course it was like me, but normally, I conceal it.
“Why do you think you’re nervous?” a classmate (and new friend from the previous evening) asked me. She spoke in the perfect tone to elicit an open response: friendly, genuinely curious.
So I found myself being 100% honest. “I think maybe I felt a certain pressure, taking a role at this conference as the visitor, the one who didn’t actually have psychiatric problems. I told everyone who would listen that I was only here because I lived nearby and a friend had aroused my curiosity. But, you know, I’m actually half-hysterical most of the time.”
Several people laughed. Now that I had admitted how nervous I had been, I no longer felt so nervous. The key was wanting to hide my true feelings, and, since that had become impossible, I had little else to fear. I shared a bit more about our group’s discussion, and then my colleagues shared their take.
I was mortified, and yet, I had a pretty good time throughout the rest of the session. My collaborators from the research discussion were extremely friendly, and we decided to stay in touch. I still seize up when I think about what happened, but here I am writing about it, so clearly I’m not that ashamed. Another conference participant suggested that I had divulged my feelings because the whole event encouraged it: many people were being open about just this sort of thing. And that made sense. I found myself wishing much more of life could be that way, allowing us to share how we feel and not hide behind a veneer of polish.
The questions remain: Did I belong at that conference, or was I an outsider looking in? It’s hard to say that I’m measurably better adjusted, whatever that might mean, than the other people in my final session, many of whom have struggled with some pretty serious diagnoses. Only one of us flipped out during our discussion. The one whose past psychotherapists always told me that they would report the most innocuous diagnosis they could find, so I could receive insurance support but not face any stigma if my records ever became public.
The professionals always seemed to be on my side. The psychologist I saw in graduate school even came to one of my talks, and wrote me a congratulatory note when she found a review of my book in the local paper. This was long after I had stopped seeing her: she worked with students at my school, and I had graduated years before.
It’s been years since I’ve had a therapist, but when I did, I told them I felt like a maniac, that I was nearly always worked up, that I couldn’t imagine what “calm” even meant. I admitted that I was hysterical, gesticulating wildly as I spoke. They laughed. They honestly found it funny. No one ever suggested I enter a psychiatric facility, despite my frequent jokes about the possibility. Many at the conference hid certain symptoms from the professionals because they didn’t want to get slapped with unwanted medications or commitments. I eked as much drama and excitement as I could out of my craziness, and was always deemed benign, though very strange.
I guess I’ve generally functioned, at school and at work. I’ve never stolen or been violent, and I have never expressed desires along those lines. OK, you know what, I have a distinct memory of telling one therapist that I would love to kill a certain person… and would probably do it if I could be 100% certain I’d never have any repercussion, in this life, or on any possible metaphysical plane. I thought I would shock her. Instead, she smiled. Maybe a truly insane person loses fear of repercussion. Maybe fear of repercussion is part of what grounds people like me.
So did I belong at that conference? Yes and no. But mostly yes, for the simple reason that I enjoyed it. What better measure is there? What better goal can any of us have as we move through this wondrous and horrifying world, trying our best to survive?
March 14, 2019
February 26, 2019