My Short-Lived Life as an LEE

A few years back I joined a Hearing Voices group.  I had been dealing with hostile, angry and often-relentless voices in my head for years.  I had been plagued with humans ranting in my head or shouting from behind bushes, or dishwashers and fridges talking at me, or birds squawking meaningfully. And I had also had visual hallucinations, awake and as I fell asleep, that defied physics, and finally it came to a point where it was disrupting my ordinary concentration, as well as my ability to focus hard on synthetic and analytic tasks and, as a result, I had to suspend my pursuit of a PhD in creative writing.

I had had brief episodes of such experiences from childhood onward, but it was after I moved to Australia in 1997 to begin a family with Kerry, my Aussie wife, in Melbourne that the hallucinatory instances increased in frequency and intensity.  People seemed meaner, uglier and more withholding than ever before. I chalked it up at the time to the conservative nature of the dominant white culture providing limited ‘breathing space’ for an American male lefty — meaning vocally supportive of a progressively political agenda. But I knew it was more than that, as I became increasingly wary of my surroundings, until I could no longer work and was diagnosed as a paranoid schizophrenic. Suddenly, I had gone from healthy and alert to disabled liability.

Kerry and I had met in Istanbul, English teachers in Turkish high schools. We lived in an apartment building full of Yabanci Ogretmen (foreign teachers) working for Istek, a private school system. I was an isolated American male among Brits and Aussies, and often the focus of their jibes by that virtue alone. I’d quit a job with the Social Security Administration to come overseas for the first time and both the Islamic Turkish culture and the expat frisson were entirely new and mind-blowing experiences for me. Kerry and I met at one of the many weekend parties, early on, before we all settled in for the gruel of teaching EFL in large (50 students), noisy classrooms.  We hit it off, after she dressed me down, needlessly, and without stimulus, as an Ugly American. Somehow, after that, we ended up together, waking to the ululations of the call to prayer, exchanging glances over a goat’s throat cut at Eid, fighting our way through the Grand Bazaar in search of a cheap air cleaner to keep our lungs alive that winter filled with soft coal smog.

A deficit in my teacher training program was classroom management, and that wanting showed up daily in my dealings with the teenaged emotional firecrackers keen to have fun with the strange American whose one suit that fit was a dark blue wool pinstripe that was a hat and tommy gun away from saying gangster loud and clear. I was traumatized by the noise that echoed against granite walls. And I weakly punished them back by including viciously-intended and totally useless vocabulary words to learn for quizzes — like conestoga and crackdown (American style). It didn’t quiet them down much, but gave me a way to vent the growing steam.

Anyway, Kerry and I stayed together. We traveled all over the place — Ireland (sullen and filthy at the time, but I’ve heard it’s improved now that the Troubles are over), Prague (home of Kafka and the Good Soldier Svejk and defenestrations), Munich (where a putsch became shove the Jews on the cattle cars  — remember?), disputed Cyprus (“Johnny Turk,” as one Brit teacher referred to the locals, facing off against the Greeks across the DMZ), Troy (where the “replica” horse looks like an AirBnB suite on wheels, shellacked and with a poop chute you could see boffo odyssey riders coming down, but not a buff Achilles). Then we got jobs in South Korea. Then Papua New Guinea. Then the United Arab Emirates. Then, wham! bam! damn! I’m a daddy in Australia.  A stranger in a strange land. Multicultures spinning in my head.

So after a while the Hearing Voices group became an opportunity to understand what was happening to me that I could not pass up.  Part of the motivation for attending the group was having listened to world-renowned voice hearer, Eleanor Longden, by then, a long-established Lived Experience Expert (LEE), who had been on the Stand-Up-and-Deliver mental health circuit for years, for a handsome fee, telling the story of her mortal battles with voices so vicious and inescapable that at times they had her wanting to drill a hole in her head to get the voices out. But Longden had learned over time to accept and even befriend her voices, and her circuit speeches, which included a TED stint, were an excellent way to exorcise her demons, while telling her story of resilience and recovery from schizophrenia to halls full of mental health professionals and recovering “clients.”

There was another guy, a Scottish fellow, named Ron Coleman, who was doing a similar stint, going around the world trashing the global mental health apparatus totally reliant on psychotropic medications, with hellish side effects, and seemingly incapable of addressing the narrative that comes with mental illness.  Like Scotty off Star Trek, Coleman was endlessly angry, and somehow convinced the overflowing crowds who came to hear him that he had been buggered not only by a priest in his youth but by the system, repeatedly, as an adult. Standing ovations after his firebrand speeches. I met up with Ron and his partner, Karen, who also delivered speeches from a nursing point-of-view, and eventually, after hearing my tale of the horrid voices in my head and my estimation that being incapable of adapting to Aussie culture, invited me to stay at a cottage they owned in the Outer Hebrides. I said, Aye, and went.

Fuck, it was cold! And to top it off, they had me paying off my stay there by caring for their pigs, which had to be fed twice a day down a long croft, blizzards and cold that made you want to cry.  And I no sooner bonded with the head cheese, Rosie, when Karen and Ron came by one morning and lured Rosie up a ramp onto a trailer, and the next time I saw Rosie she was on a plate before me at my last dinner on the island.  And Karen used to call out to her so sweetly, I thought, fork and knife in hand. I took her smile, waving goodbye to me at the airport, making my way back to Oz, with a grain of proverbial salt.

Not long after returning home, I found myself invited, as an LEE, to participate in an academic project at Curtin University in Perth called the Valuing Lived Experience Project (VLEP). Because I had resilience, as well as a masters degree in education, I was placed on a sub-committee with university teaching staff as a “co-producer.” We read a paper that discussed the project as “Transforming Teaching and Learning in Health Sciences.”  An abstract from the paper that guided our committee work read:

Education delivered by health consumers or service users, known as learning from lived experience, is widely acknowledged as good practice in the education of budding professionals. Research has demonstrated a positive impact on student attitudes, knowledge and skills when they learn in this way, and innovative approaches to engaging people with lived experience (PLE) are gaining momentum.

Who could doubt that we might understand something valuable by giving an ear to people who have valuable experience and information to share about their suffering and pain and resilience.  The education course described above would see, for instance, social work and nursing educators, employ LEEs to help their mostly young students start out with an attentive and empathetic ear with their clients.  The LEE might come to a class and make a presentation or deliver a lecture or simply tell their story and allow students to ask questions afterward.

I didn’t offer a whole heck of a lot toward the design of the curriculum. It was more like it had already been developed and I was given an opportunity to review and provide “valued” feedback.  Which I did. I have no idea if anything I ever said in a committee meeting ever actually translated into actionable classroom activities.  However, I did get offered another opportunity to stand up and deliver before a class of nursing students.  I was asked to simply tell my story of the trauma that had knocked me down and the resilience that had picked me up and dusted me off.  Ready for more. I agreed, reluctantly. I was paranoid, not nervous.

I can’t recall now the lesson plan I developed.  But essentially it involved telling a bit about a trauma I had experienced as a young child  — watching my younger brother get run over by an oil truck. I recounted as best as I could remember after 55 years.  But I had written a poem about the event some 35 years before and that became the central focus of the remembered experience, and of the lesson.  Getting hold of the nexus emotions involved to merely tell about the experience was just about impossible.  But the poem helped get the reader there. And even though I don’t regard myself in any way as a confessional poet, this particular poem, which had undergone some reiterations over the years, allowed me to get back in touch with the confusion of feelings I had felt after the experience in a way that mere memory could not any longer.  Here is the poem:

Dorchester Street 1962

I remember laughing real hard
when my brother died in front of my eyes
swept under a big black dragon of a tractor
trailer screeching WHITE FUEL painted
on its sides and just just not braking in time
gobbling him up who’d been chased by
the angry grocer with a broom for stealing
some ice cream into the middle of the wide
wide street shouting and the wagon and the driver
and the screeching and the faces swarming in
the ambulance whooping it up and the white sheet
and the morgue and my mother shrieking
the burial and hysterical madness
my god my god I laughed and laughed
after all these years I laugh so funny
so exquisitely funny the way pain is
as it tickles your insides to death

I thought the students — all of them women — followed with rapt attention.  I got a polite clap.  However, only a few asked any probing or follow-up questions, about the same ratio you’d get in any class, I decided.  Thirty students present, two or three keyed into the topic, either, in this case, truly empathetic, or else playing out their future professional role as an active learner asking appropriate diagnostic questions. As with the co-production of the syllabus for the teaching of LEE inclusion in the classroom, there was no follow-up, so I don’t know if my poem and answers had any consequence at all.  Probably not. Probably my poem and feelings and story of resilience came at them like — conestoga.  Awww, they might have been thinking, is empathy going to be on the quiz? I won’t presume to know.

I dunno.  I might have made it on the circuit as an LEE speaker, telling my story over and over again, for a fee. I don’t think there’s anything necessarily wrong with it. It’s a chance to meet new people, travel, enjoy halfway decent food and wine, and come to feel wanted as a professional speaker and co-producer of, ultimately, a brave new reality.  I’ve been on this side of it, waiting for the conference to come to town, chatting with other recoverers about the speakers coming. Oh, is Eleanor comin? I’d hear someone say among the crowd I was in with. Isn’t she the one that tried to drill the demons out of her head? Imagine being known that way, I thought. Like a horror movie trailer, almost. Folks munching popcorn while you related the grizzlies of your molestation to your global klatches of sympaticos who gather for the ‘concert’.

I guess the question for such a lifestyle is whether it did any good, in the end, for the community at large.  Did the tales of Enlightenment lead to new progressive legislation — anywhere? The other question would be: Would it have done me any good, describing the trauma over and over, to help pay off my home loan? Given that so many of these former “nutters” (some wear tee-shirts openly proclaiming their madness) lost so much after their traumas, including the ability to hold a job, maybe they say Yes, it did them some good. I never asked.

We entered the era of Recovery models in psychiatric circles a while back. It’s rather retro. Back in the 60s, in the generation I grew up in, such experiments in patient-centered therapy were far more common, folks were at communes, halfway houses, part of some kind of Upward, Onward or Outward Bound movement — that some argue led to deinstitutionalization, the defunding of the mental illness factories.  Before Ron Coleman and Rufus May and Dirk Costens, there was R.D. Laing (The Divided Self) and Augustus Boal (Theatre of the Oppressed) and primal screaming (see Yoko Ono). Moses brought us the Decalogue, Jesus the Golden Rule, and here we are waiting again for Word from the Wilderness. You can call it eternal recurrence, if you’re the amor fati type, but me, I’m almost out of here, and I ain’t planning to come back for more.

And that’s my story.  Thanks for coming.

John Kendall Hawkins is an American ex-pat freelancer based in Australia.  He is a former reporter for The New Bedford Standard-Times.