"These movements can be distracting, irritating, and even painful at times, especially if he isn't feeling well or is under a lot of stress. They play in the background as he rings up sales, chats with customers, enters orders, and shuffles money, a seamless blending of tics and tasks very typical of a life with Tourette."
"Equally typical is the fact that very few people notice it [...] Like most people with Tourette, Paul is extraordinarily good at managing his tics, controlling their timing and expression to keep others from noticing them. The process is a conscious one, and it involves a variety of movements and strategies that evolve along with his shifting panoply of motions [...] It takes effort, however, and it forms a constant background to his life at work..."
"TS is a disease defined in large part by its visibility and the stigma attached to it; the twitches, jerks, barks, and curses associated with Tourette can produce profound social difficulties, and indeed the primary burden of the syndrome is a social one"
"Given limited and unsatisfactory medical options, as well as the intense reactions of others to their symptoms, people with TS are forced into an active symbolic engagement - they must find ways to control the public face and social meanings of their disease."
"In reality, only a minority of people with TS suffer from audible vocal tics [...] In most cases, the primary manifestation of TS is physical movement, the need to make a variety of quick repetitive gestures that have no semantic content at all. The most common tics are facial [...] Rotating or clenching movements of the shoulders and neck are also common..."
"Indeed, virtually everything about TS is subject to variation. Individuals, to begin with, vary not only in the severity of their affliction, but in the particular tics they experience."
"A person's repertoire of tics, moreover, changes over the course of a lifetime. Some remain fairly constant; a man may begin a particular kind of eyeblink as a small child, and continue doing it through advanced age. Others change, coming and going over a course of months for no apparent reason."
"Stress, discomfort, and lack of sleep tend to make tics more frequent and severe, whereas a sense of security or intense concentation seem to relieve them [...] During extreme phases, tics can become extremely annoying, and at times painful or physical debilitating."
"Tics also pose a problem in schools and homes, where undiagnosed TS can be interpreted as willful misbehavior and punished accordingly. Diagnosis offers no sure solution -- teachers and even parents sometimes resist a medical characterization of what they see as deliberate disobedience."
"Tics draw attention, especially vocal ones; people with Tourette find themselves stared at on the street, in classrooms, in buses, in theatres, in all of the places where other people can move about unnoticed. The stares may be curious, hostile, or even frightened. In a sense, Tourette removes the easy anonymity of urban life, exposing the individual to a world of inquiring faces rather than Gorer's "lonely crowd"."
"Although its symptoms do not determine how its sufferers see themselves, TS can easily dominate how others see them."
"Physicians focus on medicating tics, not managing them, and no peer group exists with whom to discuss strategies. None of the people whom I interviewed had learned their own methods from someone else."
"Tourettic movements are seldom uncontrolled. They are, in fact, quite elegant. [...] Not all tics require such dexterity, but all require movement in a very controlled way. Indeed, people with TS often repeat a tic over and over, not as a rhythmic pattern but in an effort to get the movement exactly right. What is uncontrolled about a tic is not the movement itself, but the need to move, the urge to make a very specific gesture or sound. Observers often compare the experience to a sneeze, something that can be briefly suppressed but that must eventually come out."
"By constantly looking for such unobserved spaces -- empty rooms, darkened theatres, the back row of lecture halls and church services -- people with TS can remove themselves from public view long enough to release many tics."
"Spaces of invisibility exist within any social interaction, even close conversation, and they often leave enough room to manifest tics. [...] One of my first informants, when I asked how he covered his tics, gave as his most important method what he called "watching eyes". In a conversation, he said, he always closely watched the eyes of the person he was speaking to; he would hold his tics until the eyes looked away for a moment, and in that second he could move unseen. [...] By paying careful attention to sight lines, conversation patterns, and the eye movements of others, people with Tourette can find unobserved space into which tics can be displaced."
"Tics are very suggestible; thinking or talking about a movement will often bring forth the urge to perform it."
"This sort of agency, therefore, involves not merely a particular kind of action, but a particular kind of disposition, a willingness to rethin and adjust strategies endlessly in the face of a fluctuating social environment."
"For people with Tourette, the process of misattribution -- assigning movements to socially insignificant categories -- allows even many physically noticeable tics to disappear.
One such category is physical irritation, a handy box into which many minor tics can be dropped. [...] Such misattributions do not work with close acquaintances, who will over time notice the repetitive patterns in the movements, but they work well for the casual interaction involved in most social encounters."
"If one cannot control whether tics are seen, however, one can still influence how they are seen."
"Defined medically, TS calls for the particular type of sympathy and patience associated with illness in US culture."
"Contextualization also involves a loss of privacy, informing others of neurological issues that many people prefer to keep to themselves. A medical explanation, for example, removes certain kinds of blame and stigma, but it can also impose an obligation to seek medical help -- an obligation that many people with TS don't like."
"After the diagnosis, however, he says that her views changed; if the tics represented an illness, and treatments for the illness existed, then surely he ought to be treated. [...] the tics came to represent what she saw as his irrational stubborness."
"As people with TS shape the way that their tics are perceived, they mitigate the disease's effects in a way every bit as significant as medication."
"Similar observations emerge from studies of chronic pain and chronic fatigue. Like Tourette, each of these illnesses presents sufferers with an urgent need to manage the ways that their symptoms are seen and understood. Each also involves a distinctive set of physical challenges and a distinctive set of cultural classifications, which together open a particular set of avenues for individual action."
"As people like Paul Anderson go through the daily task of managing their tics -- watching others' eyes, scheduling secret moments alone, lining up unseen spaces in conversations, planning out cover stories for movements -- do they develop a distinct sort of distance between themselves and others, or between their volitional selves and their bodies?"