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Mike Barnes on living and writing with the beast of mental illness

It has taken me decades to learn how to align the desire to write with severe mental fluctuation


 

High-functioning. Very high-functioning. Even: Remarkably high-functioning.

When well-meaning and well-informed people call me these things, I’m often demoralized enough to feel consoled and even flattered. In stronger moments, however, I’m aware of the ambiguous connotations such epithets trail in their wake.

First, there are the wonky machine associations. “Functioning” calls to mind a damaged but intermittently usable device—a fritzy toaster or fan, say—which, when tilted just the right way or whacked in the right spot, can still brown bread or stir stagnant air. An almost- or soon-to-be dud, it alternates periods of utter uselessness with bursts of baffling competency.

More debilitating is the mentally audible qualifier that completes the phrase: high-functioning…considering.

Considering what you’re up against. Considering your illness.

However it’s meant, high-functioning conjures a grim, low-ceiling outlook.

An outlook that seems validated by recent CAMH statistics that tally the real-life costs of mental illness in terms of poor health, lost economic and social opportunities, and stigma.

Mental illness is the leading cause of disability in Canada. The mentally ill are more likely to die prematurely than those in the general population, their lives cut short by as much as 10-20 years. Nearly 4,000 Canadians commit suicide each year, almost 11 every day. In Ontario, the disease burden of mental illness and addiction, including years lived with less than full function and years lost to early death, is 1.5 times higher than that of all cancers put together and 7 times that of all infectious diseases.

The economic costs of mental illness, for afflicted individuals and for society, are just as dire. In a given week, 500,000 employed Canadians are unable to work due to a mental and/or behavioural disorder. Unemployment rates climb to 70-90 per cent for people with the most severe mental illnesses. The economic burden placed by mental illness on the whole of Canada is estimated to be $51 billion per year, including “health care costs, lost productivity, and reductions in health-related quality of life.”

Then there is stigma. Stubbornly devastating, despite the “conversation” about mental illness said to be and sometimes actually occurring. As a topic, mental illness may be out of the closet; as a lived reality, it is still mostly behind locked doors. According to a 2008 CAMH survey, just 50 per cent of Canadians would tell friends or co-workers they have a family member with mental illness. Forty-two per cent are unsure whether they would socialize with a friend who has a mental illness. (Not enter into a business partnership or set up house with; just socialize.) Twenty-seven per cent are fearful of even being around someone who suffers from serious mental illness (as if it might be communicable by air or spectral auras). Fifty-five per cent admit they would be unlikely to enter into a spousal relationship with someone with mental illness. Yet, flying in the face of the term “illness,” 46 per cent of respondents think “people use the term mental illness as an excuse for bad behaviour.” If only.

It’s no wonder, given this pervasive stigmatization and fear, that most mentally ill people hide their conditions as best they can. All of the mentally ill people I know fall somewhere on the spectrum from total secrecy to highly selective and partial disclosure. In fact, I know gays and lesbians who are out about their sexual orientation, and ex-cons who speak forthrightly of their prison time, all while keeping stumm about the mental illnesses they live with.

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Somewhat to my surprise, I found a noir novel to be the ideal vessel for the stew of rage, sadness and indignation stirred up by these realities—leaving, as an added bonus, lots of room for the black high spirits of revenge. The Adjustment League’s protagonist-narrator, known only as the Super, is intermittently high-functioning, but his sympathies abide with the chronically low-, among whom he has spent large swathes of his life: the homeless, the severely mentally ill, the locked-up, the beaten-down, fringe-dwellers of all kinds. The malefactors he uncovers and targets for “adjustment” are all, by definition, high-functioning: “successful” by all outward measures. Like most abusive and even lethal members of the elite (pick your own favourites), they would easily pass any common test of sanity.

The Adjustment League is not a roman à clef: no person or event in it maps directly onto my experience. But it is informed at every turn by a lifetime of passing in and out of non-functioning and low-functioning, and by the need, dictated by survival and self-respect, to find ways to pass as high-functioning at times when I am anything but. To be a spy in Normalcy: an operative working under deep cover, with a backstory and supporting documents and an array of gab and gimmicks that allow me to evade detection. A spy, though, serves a cause, and what is mine? The most fundamental cause of all: to lie low enough to live another day.

To survive each encounter with The Beast and to go on building and re-building a life around it.

Between the ages of 22 and 42, mental illness kept me out of the work force entirely for eight years. For another seven years I found work, often occasional, as a janitor, dishwasher and security guard. In a bright burst around age 30, I borrowed money and returned to school to finish my long-abandoned B.A. and add to it a B.Ed. The far-better-paying job of classroom teacher during the three years that followed—which allowed me to clear my debts, returning me to the economic starting line—was brought to an end by a worse-than-usual bout of mania culminating in a psychotic break. So much for upward mobility.

A math-minded friend once made a quick calculation that my forced exit from classroom teaching cost me, at a minimum, two million dollars in lost income, pension and benefits. But the chalkboard was never really for me. For the past 18 years I’ve been self-employed as an in-home tutor—a job which, while it involves an onerous amount of rush-hour driving and earns me less than $20,000 a year, suits me much better. At flexible times, I meet one-on-one with students of diverse backgrounds, ages and abilities; and I teach them what they need to know, free from a muddled and meddling bureaucracy. I feel far more consistently useful than I ever did in school.

Whatever else it is, mental illness in any form is a learning disability. It has made me a better teacher, since, if I have not faced the particular learning challenge my student is facing, I have faced analogous ones and have worked out, often by arduous trial-and-error, ways of coping with them. Getting my B.A., for example, was a 13 stumble, as recurrent mental eruptions—which I scarcely understood at the time—kept forcing me to start and quit, start and quit, then quit again, sometimes for years at a time.

When, in 2008, I published my memoir of mental illness, The Lily Pond, I feared it might cost me this job of tutoring that I love and have built from scratch. No matter how much they valued my teaching, would my clients still be willing to employ me once they knew of the severity of my illness? Fortunately, their disinclination to read came to my rescue, so that my question never had to be answered. Though a few bought the book out of loyalty, only one that I’m aware of dipped into it; she, a former nurse, expressed understanding and still employs me.

Writing has posed subtler, steeper challenges. It has taken me decades to learn how to align the desire to write with severe mental fluctuation: to sense when and how and what kind of writing might be attempted—and, just as importantly, to know when writing is impossible. I need to keep my ear constantly to the ground—ground being my own mind—to hear how much, and what kind of, meaningful traffic with words is possible. It seems deeply strange, even now, to be a writer who for long stretches cannot read or write or even think straight—like a competitive runner who, for weeks and months at a time, cannot walk across the room—yet, on the evidence of nine books and many shorter publications, it is a strangeness that is possible.

Compared to this daily negotiation between words and mental competence, my public outings as an author have been rare and brief. Yet I have dreaded them disproportionately. Typically they must be scheduled far in advance, and I never know whether I will be well or very unwell when the day arrives. Many events have gone off fine. But it is the ones that turned into ordeals that lodge in my memory as scars, fault lines that speak of having done real damage to myself. These were times when I felt the rupture between private and public selves almost as a physical fracture, as I fought through psychotic overlays to deliver the polished performance I was sure the audience insisted on. When you’re under the deepest cover and your disguise starts to slip, all eyes are those of the Psych-Stasi.

Amnesia? Aphasia? Fugue states? Hallucinations? Come with us, please.

Maybe I’ve just been too shy. Too decorous. Maybe it would have been a good thing to admit to that panel that I couldn’t remember the books under discussion, including my own, because my verbal circuits were being yanked out as I entered my amnesiac-aphasic phase. Maybe it would have been good to stop one of those readings and confess that I couldn’t continue for the perceptual riot making hash of the words on the page and the audience’s faces, forcing me to intone a mixture of memory and confabulation into the thickening chaos. Who knows but that something useful might have come from such a public breakdown of the art delivery system? Who knows but that some (well-hidden) members in the audience might have welcomed it?

Implicit in all these bio-snippets is the idea of repeated return. Not of recovery, or the process of recovery—terms which, though I’ve used them in previous talks and essays, now strike me as misleadingly assured. Bouncing back won’t do: alas, there’s less elastic each time round. Coming back from the very “away” place that is mental illness at its worst—climbing back: that sounds best. Like those slowly-ascending human ants, tamping in pitons, securing ropes, slinging nylon “homes” from sheer faces—always a pebble-shift away from the fall into oblivion.

Climbing back, for me, involves measures that grow more practical and deliberate by the year (in counterpoise, I suppose, to the surreality and randomness of the attacks that make them necessary). I could list a hundred: I’ll describe two. I locate absences, things I knew before the break that are now blanks, and try to reconstitute them; for example, I re-read, slowly and repeatedly, bits of texts I knew well, sometimes by heart, just weeks ago, before sickness blasted them away. A year from now, I might use the same procedure to fill the same gap (very likely not remembering, unless I wrote it down, that I did so last year). Also, by cross-referencing material evidence like daybooks and receipts and emails, and by posing questions ad nauseam to my patient wife, I try to reconstruct a basic timeline of the missing weeks or months or, in the worst cases, years (the past five years are particularly patchy): as I collect sequences that seem trustworthy, I write them down and study them. Telling myself back to myself.     

Let those two stand for the myriad wiles and protocols of reinvention I have amassed and hope to keep amassing. When the pace and scope of deconstruction is on the rise, you can never have too many tools and building materials. As the sociologists Steven J. Onken and Ellen Slaten observe, “the individual must redefine the self over and over in light of the ongoing and ever-changing nature of the mental illness condition itself and society’s response to it.”[6]

Assembling the ever-growing toolbox that allows me to live with the shape-shifting and shape-annulling Beast of mental illness has been, paradigmatically, the “craft so long to lerne”—in all ways, the most sustained and difficult creative act of my life, the one requiring by far the most prolonged and varied exercise of intelligence, study, diligence, experiment, analysis and imagination.

Living this long with this, as well as I’ve managed to, may be the title of no published book—but it is the book I am proudest of.

 

 

 


 
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Mike Barnes on living and writing with the beast of mental illness

  1. —Then there is stigma.

    There is the belief in stigma. Its power lies in believing it.

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