So Much Soup and Garbage Can
Medicine tells us as much about the meaningful performance of healing, suffering, and dying as chemical analysis tells us about the aesthetic value of pottery.
IVAN ILLICH, Limits to Medicine
Until four years ago, I understood attention deficit disorder about as well as the average North American doctor, which is to say hardly at all. I came to learn more through one of those accidents of fate that are no accidents. As medical columnist for The Globe and Mail, I decided to write an article about this strange condition after a social worker acquaintance, recently diagnosed, invited me to hear her story. She had thought I would be interestedor more likely she sensed it, with a gut-level affinity. The planned column became a series of four.
To dip my toe in was to know that, unawares, I had been immersed in it all my life, up to my neck. This realization may be called the stage of ADD epiphany, the annunciation, characterized by elation, insight, enthusiasm and hope. It seemed to me that I had found the passage to those dark recesses of my mind from which chaos issues without warning, hurling thoughts, plans, emotions and intentions in all directions. I felt I had discovered what it was that had always kept me from attaining psychological integrity: wholeness, the reconciliation and joining together of the disharmonious fragments of my mind.
Never at rest, the mind of the ADD adult flits about like some deranged bird thatcan light here or there for a while but is perched nowhere long enough to make a home. The British psychiatrist R. D. Laing wrote somewhere that there are three things human beings are afraid of: death, other people and their own minds. Terrified of my mind, I had always dreaded spending a moment alone with it. There always had to be a book in my pocket as an emergency kit in case I was ever trapped waiting anywhere, even for one minute, be it a bank lineup or supermarket checkout counter. I was forever throwing my mind scraps to feed on, as if to a ferocious and malevolent beast that would devour me the moment it was not chewing on something else. All my life I had known no other way to be.
The shock of self-recognition many adults experience on learning about ADD is both exhilarating and painful. It gives coherence, for the first time, to humiliations and failures, to plans unfulfilled and promises unkept, to gusts of manic enthusiasm that consume themselves in their own mad dance, leaving emotional debris in their wake, to the seemingly limitless disorganization of activities, of brain, car, desk, room.
ADD seemed to explain many of my behavior patterns, thought processes, childish emotional reactions, my workaholism and other addictive tendencies, the sudden eruptions of bad temper and complete irrationality, the conflicts in my marriage and my Jekyll and Hyde ways of relating to my children. And, too, my humor, which can break from any odd angle and leave people laughing or leave them cold, my joke bouncing back at me, as the Hungarians say, like "peas thrown at a wall." It also explained my propensity to bump into doorways, hit my head on shelves, drop objects and brush close to people before I notice they are there. No longer mysterious was my ineptness following directions or even remembering them, or my paralytic rage when confronted by a sheet of instructions telling me how to use even the simplest of appliances. Beyond everything, recognition revealed the reason for my lifelong sense of somehow never approaching my potential in terms of self-expression and self-definitionthe ADD adult's awareness that he has talents or insights or some undefinable positive quality he could perhaps connect with if the wires weren't crossed. "I can do this with half my brain tied behind my back," I used to joke. No joke, that. It's precisely how I have done many things.
My path to diagnosis was similar to that of many other adults with ADD. I found out about the condition almost inadvertently, researched it and sought professional confirmation that my intuitions about myself were reliable. So few doctors or psychologists are familiar with attention deficit disorder that people are forced to become self-cultivated experts by the time they find someone who can make a competent assessment. I was fortunate. As a physician, I could negotiate the medical labyrinth and seek the best sources of help. Within weeks of having written my columns on ADD, I was assessed by an excellent child psychiatrist who also sees adults with the disorder. She corroborated my self-diagnosis and began treatment, at first by prescribing Ritalin. She also spoke with me about how some of the choices I was making in life reinforced my ADD tendencies.
My life, like that of many an adult with ADD, resembled a juggling act from the old Ed Sullivan show: a man spins plates, each balanced on a stick. He keeps adding more and more sticks and plates, running back and forth frantically between them as each stick, increasingly unsteady, threatens to topple over. He could keep this up only for so long before the sticks tottered and the plates began to shatter, or he himself collapsed. Something has to give, but the ADD personality has trouble letting go of anything. Unlike the juggler, he cannot stop the performance.
With an impatience and lack of judgment characteristic of ADD, I had already begun to self-medicate, even before the formal diagnosis. A sense of urgency typifies attention deficit disorder, a desperation to have immediately whatever it is that one may desire at the moment, be it an object, an activity or a relationship. And there was something else here too, well expressed by a woman who some months later came for help. "It would be nice to get a break from myself at least for a little while," she said, a sentiment I fully understood. One longs to escape the fatiguing, ever-spinning, ever-churning mind. I took Ritalin in a higher than recommended initial dose on the very day I first heard about attention deficit disorder. Within minutes, I felt euphoric and present, experienced myself as full of insight and love. My wife thought I was acting weird. "You look stoned" was her immediate comment.
I was not an undereducated teenager eager for kicks when I self-administered the Ritalin. Already in my fifties, I was a successful and respected family doctor whose columns of medical opinion were praised for their thoughtfulness. I practice medicine with a high value on avoiding pharmacology unless absolutely necessary, and needless to say, I have always advised patients against self-medicating. Such striking imbalance between intellectual awareness on the one hand and emotional and behavioral self-control on the other is characteristic of people with attention deficit disorder.
This plunge into impulsiveness notwithstanding, I believed there was light at the end of the tunnel. The problem was clear, the remedy elegantly simple: certain parts of my brain were dormant half the time; all that needed to be done was to rouse them from slumber. The "good" parts of my brain would then take control, the calm, sane, mature, vigilant parts. It did not work out that way. Nothing much seemed to change in my life. There were new insights, but what had been good stayed good and what had been bad stayed bad. The Ritalin soon made me depressed. Dexedrine, the stimulant I was next prescribed, made me more alert and helped me become a more efficient workaholic.
Since being diagnosed myself, I have seen hundreds of adults and children with attention deficit disorder. I now think that physicians and prescriptions for drugs have come to play a lopsidedly exaggerated role in the treatment of ADD. What begins as a problem of society and human development has become almost exclusively defined as a medical ailment. Even if in many cases medications do help, the healing ADD calls for is not a process of recovery from some illness. It is a process of becoming wholewhich, it so happens, is the original sense of the word healing.
There is no disputing the malfunctioning neurophysiology in what we call attention deficit disorder. It does not follow, however, that we can explain all the problems of the ADD mind simply by referring to the biology of out-of-balance neurochemicals and short-circuited neurological pathways. A patient and compassionate inquiry is needed if we are to identify the deeper meanings manifested in the crossed neural signals, troubled behaviors and psychological tumult that together have been named ADD.
My three children also have attention deficit disordernot diagnosed by me but according to evaluations at a hospital-based clinic. One has taken medication, with clear benefit, but none do so at the present time. In light of such a strong family history, it may seem surprising that I do not believe ADD is the almost purely genetic condition many people assume it to be. I do not see it as a fixed, inherited brain disorder but as a physiological consequence of life in a particular environment, in a particular culture. In many ways one can grow out of it, at any age. The first step is to discard the illness model, along with any notion that medications can offer more than a partial, stopgap response.
A certain mystique has recently evolved around ADD, butdespite what many people thinkit is not a recent discovery. In one form or another, it has been recognized in North America since 1902; its present pharmacologic treatment with psychostimulants was pioneered more than six decades ago. The names given to it and its exact descriptions have gone through several mutations. Its current definition is given in the fourth edition of the Diagnostic and Statistical Manual, scripture and encyclopedia of the American Psychiatric Association. The DSM IV defines attention deficit disorder by its external features, not by its emotional meaning in the lives of individual human beings. It commits the faux pas of calling these external observations symptoms, whereas that word in medical language denotes a patient's own felt experience. External observations, no matter how acute, are signs. A headache is a symptom. A chest sound registered by the doctor's stethoscope is a sign. A cough is both a symptom and a sign. The DSM speaks the language of signs because the worldview of conventional medicine is unfamiliar with the language of the heart. As the UCLA child psychiatrist Daniel J. Siegel has said, "The DSM is concerned with categories, not with pain."
ADD has much to do with pain, present in every one of the adults and children who have come to me for assessment. The deep emotional hurt they carry is telegraphed by the downcast, averted eyes, the rapid, discontinuous flow of speech, the tense body postures, the tapping feet and fidgety hands and by the nervous, self-deprecating humor. "Every aspect of my life hurts," a thirty-seven-year-old man told me during his second visit to my office. People express surprise when after a brief exchange I seem to be able to sense their pain and grasp their confused and conflicted history of emotions. "I'm speaking about myself," I tell them.
At times I have wished that the "experts" and media pundits who deny the existence of attention deficit disorder could meet only a few of the severely affected adults who have sought my help. These men and women, in their thirties, forties and fifties, have never been able to maintain any sort of a long-term job or profession. They cannot easily enter meaningful, committed relationships, let alone stay in one. Some have never been able to read a book from cover to cover, some cannot even sit through a movie. Their moods fly back and forth from lethargy and dejection to agitation. The creative talents they have been blessed with have not been pursued. They are intensely frustrated at what they perceive as their failures. Their self-esteem is lost in some deep well. Most often they are firm in the conviction that their problems are the result of a basic, incorrigible flaw in their personalities.
I would want any doubting Thomases to read and consider the autobiographical sketch submitted to me by John, a fifty-one-year-old unemployed single man. With his permission, I quote it exactly as written:
Had Jobs work Do my Best I could never good enough, when people Talk to me they ask me if I Listening or I seem Bored. Shown emotion or I drift off or when I get to do Something can't finish it or start doing Something then eye start Something else. when I sometimes most of the time wait till Last minite To do things. Get a anxous feeling got to do it or else. feel pressured. Seem to mindwonder or daydream. for ever misplacing, loosing things, can't remember where I put Something away. "forgetful" confused, jumbled thinking. get mad about nothing people ask me whats wrong I say nothing. I can't seem to get what people want from me can't understand. when I was a kid. couldnt sit still figety. Report cards in school would always have something like doesn't pay Attention in class, doesn't sit still took me longer to Learn or understand. Always was in trouble was stuck sitting in front of class or in back of class or principal's office (strapped) been tied down in chair, always seeing counsellors, teachers always saying sit still be quiet. Sent to sit out in hall my dad was always telling me to sit still what lazy bum I am my room. was always yelling at me.
John's speech is far more articulate than his writing but no less poignant. "My dad," he said, "always rubbed my nose in it, that I should have been a doctor or a lawyer, or else I wouldn't amount to anything. After my parents divorced, the only time they would talk to each other was when my mother called my dad to say `give him heck.' ... I saw a video last week," he added. "Its title expressed how I feel: I Am Sick and Tired of Being Sick and Tired."
Patients are graphic about their feeling states, often almost lyrical. "Ah," a forty-seven-year-old man said with a discouraged wave of the hand and a smile that was resigned and mischievous at the same time, "my life is just so much soup and garbage can." What those words mean exactly, I could not say. Like poetry, they convey their meaning through the feelings and word associations they evoke. "Landed in the soup." "Fog as thick as soup." "Soup kitchen." "Treated like a piece of garbage." "I feel like garbage." Images of distress, loneliness and confusion, presented with a tinge of humor. The strangely dissonant imagery tells also of a troubled soul who found reality harshso harsh that the mind had to be fragmented in order to fragment the pain.