Life With Tourette's Syndrome
Adam Ward Seligman likes to tell the story about the guy who hears about a mystic who can walk on water. "So the guy goes to the mystic and says, 'I want to walk on water, too.' The mystic says, 'It's really easy. You eat these foods, you say these prayers, and then you can walk on water.' Guy says, 'Great.' Then the mystic says, 'Oh, one other thing: Don't think about monkeys.'"Seligman smiles. The irony, of course, is that if you warn someone not to think about something, he won't be able to help thinking about it. It's a catch Seligman, who's 35, and his wife, Julie Ann Furger, 30, understand well, which is why Don't Think About Monkeys is the name Adam gave to a book he co-wrote and to his and Julie's online magazine (www.sonic.net/echolaliapress). Echolalia Press is the publishing company they run from their Santa Rosa, Calif. apartment, and both publications are written primarily for people with Tourette's Syndrome, a disease Adam and Julie both have.We're sitting on the grass on a nice fall day and Adam is explaining the "monkey" irony. "For somebody with Tourette, if you don't think about your tics, you don't do them as much. The 'psychic Tourette thing,' we call it." But not thinking about Tourette isn't easy. "I irritate myself with my vocal tics," Julie says. "Sometimes I say inside myself, Can't you just shut up? And Adam gets irritable with the really loud shouts." Adam and Julie both have involuntary motor and vocal tics, including coprolalia, or shouting obscenities, but Julie's symptoms currently are worse.Still, being home together with their cats, dog and snake mitigates their symptoms. "When I lie on the green lawn and watch my cat hunt, I'm totally quiet and tranquil," Julie says. Predictably, it's going out into the world with its stresses, its strangers, and their rude stares, that makes life difficult for Adam and Julie, although their skins are a lot thicker now than when they were younger. "I used to be really scared of people, and I was terrified to go to school," Julie recalls of her teenage years, before she was formally diagnosed, but after the first symptoms appeared. "I didn't want to draw attention to myself, so I made damned sure that people didn't hear me. I can hold in a tic for a period of time."They're in Berkeley for the day, at the downtown main library, where they're guest speakers at a Tourette's support group, held in a meeting room off the children's section. Tots are running around with Dr. Seuss books, and older kids are reading at little tables just outside the room. "I was terrified to come in here," Julie says, glancing at the kids. She was afraid some scatological words might come bursting out of her mouth on their own accord in public. Adam just chuckles and says, "I think it's hilarious that they're having this in the library." The support group members who show up include five mothers and a dad of Tourette children, and one TS kid, a bright-eyed, happy boy who seems to be about 11 years old. Most of the parents have never met Adam or Julie, and are here not only to ask them questions, but, it seems to me, to scrutinize them for clues as to what kind of people their children might grow up to be -- surely a matter of no small concern to them.The two-hour discussion revolves around the minutae of the Tourette community. Any Touretter, or any parent of a Touretter, will have a vast knowledge of pharmaceuticals, of SSRIs and other anti-depressants, of Moban and Haldol and Deprenyl and dosages and side effects. Another inevitable part of any Tourette discussion centers around doctors. Things can get downright gossipy. Even in a region as large as the San Francisco Bay Area, the physicians who specialize in Tourette and associated illnesses are few in number, and older Touretters like Julie and Adam, who have been in and out of their offices for years, have definite opinions. When one mom says she's been bringing her Tourette daughter to a Dr. L., Julie grimaces comically and makes a thumbs-down motion. "Misogynist," Adam cries out. Another mom calls Dr. L. "a lost cause." Everyone laughs; here, they're family. One young couple, whose teenaged child was just recently diagnosed, and whose faces and body language betray sleepless nights and anxiety-filled days, wonder how to find the right physician. The more experienced moms, and Adam and Julie (who are trying to have their own first child), agree that the two fragmented ways many doctors view Tourette -- what Adam calls the "crazy parent" theory vs. the "you need drugs" approach -- both are inferior to "the holistic view," which sees the Touretter as more than just his disease.Later, after the meeting, this point comes up again. I had been asking Adam and Julie about their medications -- how much they spend on drugs, how often they take them -- when Adam, normally the friendliest of people, becomes irritated. "I mean, no matter when I'm interviewed, it always comes down to, 'He swears and spits and takes a lot of drugs,' and it never gets down to the fact that I've been a professional writer half my life, that I've published 300 non-Tourette articles, and written for 40 different publications.""WE ARE NOT OUR MEDICATIONS!" Julie says, in what I take to be a deliberate rephrasing of the Elephant Man's, "I am not an animal!" Then she reproaches me with a question. "Why are you talking about our medication and how many pills? It's like, that's not what we're about.""Now you're making me feel defensive," I say, asking if I might explain myself."Okay, please do," Julie says. If anything, she's friendlier, more accommodating than her husband. "If you guys didn't have Tourette," I say, "if you were just two regular people working in a bank, you wouldn't be here being interviewed by me or anyone else. The reason you're being interviewed is because you have Tourette, and people have some interest in that. It's my obligation to tell them about what your life is like, and part of that is the pills and the health insurance and the money. You have to be fair.""That's true," Julie muses. Then Adam says, "But part of what triggered your interest in this article was, 'Married couple with Tourette have publishing house that only publishes people with Tourette.' In my eyes, this is an affirmative action story about writing; not a medical story.""Okay," I say, "let's talk about your business." The couple started Echolalia Press so Adam could have more control over his books. His first, Echolalia, which was published by another company, "was severely edited, the marketing was a disaster, and my royalties suffered," Adam says. (Echolalia is another Tourette symptom. It means repeating someone else's last words.) The company has now expanded to include the writings of others, including the young Lesbian writer from Northampton, Emma Morgan, who also has Tourette. Julie, too, has started to publish, not the writings from her private journal but poetry. Her poems, which are mainly about herself and her marriage, have as their subtext womanhood, a source of power that, as a Wiccan, Julie is very much in touch with. In A Woman Takes a Lover, she writes: "Woman takes a lover to her Head, / There, her mind alights with Fire; / Friendship and Intellect align in mutual Respect: / Communication, her natural Power./ But when the same woman takes a lover to her bed, / Her Sexuality finally Unleashed, / She'll forge great Rivers of energetic Lust: / Sensualness, her natural Expression."Julie is clearly the more Dionysian of the two, Adam, the more cerebral. Both are very bright. They tend to finish each other's sentences, Julie more so than Adam, which must have been a problem at first, because now they have developed protocols and rituals of courtesy and apology when one cuts the other off. "I'm sorry," one will say, or, "No, you go first." "If someone starts a sentence, I know what they're going to say most of the time," Julie says. She is aware of this habit, and will frequently ask the voluble Adam for permission to interrupt him in order to say something. But Adam will just as frequently allow as to how Julie is a better, more natural poet than he, and can express subtler thoughts -- a frank admission from a man who admits to desiring to write The Great American Novel.I ask if having Tourette can be a blessing, and it's like hitting the jackpot. "Yes!" Julie proclaims. "I like to describe it as the sacred and the profane," she says, her words punctuated by scatologies. In fact, Julie believes Touretters tend to be more intelligent than average people, although Adam has his doubts about that. "A lot of parents think that just because their child has Tourette, they're gifted as well, but it's not a straight trade," he says. Julie holds her ground. "They do tend to be extra-intelligent. And very creative. Touretters think fast, and move fast."They both agree the disease has its advantages. "Tourette is not a deficit. It's an additive disorder. We have an extra thing," Adam says. "Pure energy," Julie interjects. When they get excited, the tics increase. Now, they're both excited. "We do more than the average person," Adam says, ticking and spraying. "Because of the obsessive-compulsiveness, the drive, the fascination with tactile objects, it's an extra." Glancing at his wife, he says, "We sometimes jokingly call it 'Tourette sapiens.' Maybe we're the next stage in human evolution. Julie thinks we are." "That's not very flattering to the rest of us," I say, smiling."You've got to understand, we've been put down for having this, stigmatized, shunned, rejected, ridiculed," Julie says, with intensity. Adam jumps in. "White American, white bread male Republican Christians have been the dominant culture in this country for years, but maybe..." Now Julie is cutting him off. "Did you know that refined white bread takes all the nutrients, the fiber, the substance, the goodness out of it, and makes it weaker?" She's speaking very rapidly now, the ideas are flying. Adam, too. There are references to Malraux, to Einstein. "Cunt, cunt!" Julie coprolaliates. "Satan! Fuck!" Adam is involuntarily spitting so profusely, the grass at our feet is covered with a white matting of foam. "This is," Julie says, finally, "an opportunity for all society to learn that a disease does not cancel out a person or their expression!"Adam calls Tourette "a neurological, genetically-based disorder with psychiatric symptoms." He, like most Touretters, flatly rules out a purely psychiatric explanation for Tourette, or for any mental illness for that matter, and subscribes instead to the theory that all are caused by mutations of our genes. Freud and psychoanalysis, Adam says, are "dangerous."But the odd, often bizarre behaviors that people with Tourette display, can make others feel it is not so much physically-based as a mental abnormality. Some even refuse to recognize Tourette as a disease, as such, and think Touretters are simply acting out -- deliberately choosing to be shocking, offensive or provocative. Adam recalls a time he went into a Berkeley bookstore that was selling one of his books. He began ticking; the manager tried to throw him out. Adam showed her the book and explained the situation, "but she said she didn't believe the disease existed," he says. He had to leave the store.The syndrome was named for a French physician, Georges Gilles de la Tourette, who described it in 1885 (and who, ironically, worked for a time with Sigmund Freud). It usually manifests early. Julie can recall symptoms in herself before the age of 1, but typically, it strikes children at around age seven. It crosses racial and ethnic lines with impunity, although it does affect three times as many males as females. The Tourette child will develop an eye blink or a head tic, or insist on touching objects in ritualistic ways. Vocal tics, like barking, throat clearing and sniffing or the spitting that Adam calls "non-verbal coprolalia," may also be symptoms. Actual coprolalia occurs later, when the child has internalized "taboo" words. Many things about Tourette are puzzling, but one of the most mystifying is the range of symptoms scientists currently classify within the disease.In addition to coprolalia, echolalia and motor tics, they include palilalia (repeating one's own last words), and echokinesis (repeating the movements of others). Obsessive thoughts also occur in some individuals. In recent years, researchers have also come to believe that other behavioral disorders such as obsessive-compulsive disorder, attention deficit disorder, hyperactivity, and even some learning disabilities may be related to, or symptomatic of, Tourette. Like AIDS, Tourette is a syndrome -- an official classification of disorders, and not a distinct disease with picture-perfect clinical manifestations. And, as with AIDS, the list of related disorders can, in the words of one researcher, "spontaneously grow, recede and change over time." A very mysterious illness, indeed.Because of the difficulties in obtaining firm diagnoses, estimates of the number of Touretters in the United States vary, from a low of 100,000 to a high of 3.5 million. The shift in thinking away from psychological causes to physical ones -- not just among Touretters themselves, but also the scientific community -- has come about because of an increasingly persuasive body of evidence. Touretters show abnormal electroencephalograms. Most also have a family history of Tourette, suggesting something genetic; an exciting field of research that is bearing increasingly fruitful results is the search for Tourette's candidate mutated genes. Both Adam and Julie have relatives who had Tourette, or something that looked a lot like it, and it runs in Adam's family on both his parents' sides. That makes Adam what Touretters call "fully loaded" for the disease -- he had to come down with it. It also means that if Adam and Julie ever have a child, the baby will be fully loaded, too.Treatment for Tourette, like that for other forms of mental illness, for a long time consisted of psychological interventions: psychotherapy, behavior modification, hypnosis, even exorcism. Julie's parents, who were Roman Catholic, for a time thought she might be possessed. She remembers, with distaste, an episode. "They took me to a parapsychologist -- as you can tell, I'm still very angry about this -- and he was sort of a quack. He tested me, and I'm surpressing, I'm not ticking in the room with him, and he says, 'You shouldn't wear red or dark colors.' Something like that, I don't know." Such was the ignorance that surrounded Tourette. But the discovery of the antipsychotic drug haloperidol in 1961, which had a dramatically successful effect in treating Touretters, turned the psychological model on its ear.Haloperidol (brand name Haldol) is a curious and amazing drug. It was one of the first of a generation of antipsychotics that appeared in the '60s, and which were so effective at ameliorating the symptoms of mental illnesses like schizophrenia and hallucinations that they forced scientists to consider the notion that such disorders were based on physical, not mental, abnormalities; the term "organic mental disorder" was invented to express this very concept. How haloperidol works is unknown; it seems to impair the production of dopamine, a neurotransmitter chemically related to "speed" that helps transmit messages in the central nervous system. But that haloperidol works is unquestioned. It is, to use an unscientific word, a downer. If you are displaying psychotic behaviors -- if you are manic, aggressive, agitated, hyperactive, compulsive, hallucinating -- Haldol usually will relieve your jitteriness. If you are a Touretter, it similarly runs interference on the tics and shouting -- it tamps down the "pure energy" Julie speaks of, like cutting off oxygen from a fire. Haloperidol is, more accurately, a neuroleptic. Like barbituates, anesthetics and other central nervous system depressants, it makes people who take it feel as if they were underwater. For this reason, many individuals for whom it is indicated shy away from Haldol and related drugs, including Julie, because it can make them feel sluggish and leaden. "I'm resistant to taking my medicine because it makes me really sleepy and I can't accomplish as much. So I try to put it off," she says. Of course, when Julie puts off taking her medication, which can cost both her and Adam up to $600 a month beyond what their health insurance pays for, her symptoms get worse, and Adam becomes more irritated with the shouting. It's a vicious cycle. The cost of their medications also means that money is tight in the Seligman-Furger household. The phone is often disconnected because Adam and Julie can't afford to pay their bill; as Adam says, "We make choices that medication and rent come before communication." That makes succeeding at the family business, Echolalia Press, all the more urgent, which is why Adam and Julie feel the need to market it whenever they can. When they speak at Tourette support groups or conventions, they bring their current publications with them and sell them, as Adam points out, "at full retail," rather than the discount prices his former publisher sold them for. The desire to succeed at their chosen career is also a reflection of their determination to work for themselves, to never again have to work for someone else. Both have been there, done that, with painful results. Julie, who used to work at a cafe in Petaluma, tells the following typical story, which occurred shortly before she was diagnosed, at the age of twenty-four. "I had to have a job to earn money. So I'm going about my work, trying to keep it in, and not tic. But one day my Tourette wanted out, and my co-workers started hearing me using swear words" -- Here Adam humorously interpolates, "At the lettuce! Satan and the lettuce!"Julie continues. "So they got upset, and people in the cafe complained, and it was very traumatic. When I got diagnosed, I brought in the information in the [Tourette] pamphlet to my manager, and she looked at it and said, 'I just don't believe this exists.' And it was in black and white print." Adam's own experience working in offices -- he was publicity director for a Santa Monica record company, among other things -- also was so stressful that, at one low point in his life, he became an alcoholic, a condition he has now left behind as a member of a recovery program. Now, "I never want to work an office job again," he declares. He receives some money from a trust fund which his father, a television producer responsible for such TV shows as Combatand Shindig," set up. Julie is on Social Security disability, but their combined income is nowhere near enough to support themselves, and so there is that added urgency to make the business succeed. Adam now is branching out, and Echolalia is publishing non-Tourette-related books, particularly in the field of music, especially jazz. Adam is a long-time fan, and is, in fact, rather well known as a jazz reporter. His latest book, just out in December, is entitled Requiem for Orpheus, and is what he calls "an extended jazz elegy" or "jazz poem" for the murdered musician Jaco Pastorius, of the group Weather Report.They will also need more money to raise the baby they hope to have. The subject of parenthood is one that elicits mixed, strong emotions in both Adam and Julie. Like any young couple, they long to start a family, and have a perhaps idealized notion of the role a child will play in their marriage. But some members of their own families are violently opposed to the idea since it is virtually 100 percent certain that any child they produce will have Tourette. I asked Adam and Julie how they felt about bringing a Tourette baby into the world and Adam exploded in uncharacteristic bitterness and anger."Do you find us that defective and repulsive that you're advocating eugenics?" he asked, spitting. He and Julie had had a long, hard day, I knew -- before speaking to the Berkeley group, they'd been at a similar meeting in Stockton, and still had to make the long drive back up to Santa Rosa. They were tired and irritable. But before I could answer, Julie told her husband, "He's playing Devil's advocate!"I replied that I did not necessarily object to their having children, but that, as a writer, it was my obligation to ask the question -- and as a journalist himself, Adam should know that. "Yeah, I understand," Julie said. "The readers are gonna..." But before she could finish her sentence, Adam said, "Well, I think it has to do with the right to choose, and we choose to have children, and no one can tell us not to, not my mother, or my brother, or my sister, or a doctor." Adam is also the more politicized of the two. I could imagine all the people he had mentioned imploring him, in a reasoned, earnest way, not to have a child. And Adam had simply decided to tell them all to kiss off.For all the tales they have to tell, the one Adam and Julie most enjoy relating is a love story: their own. They told me, in rather explicit detail, about their meeting, courtship, dating and first sex. More touching were their mutual fears that long-term romantic love (as opposed to occasional promiscuity) was out of reach for people like them. Listening to Adam and Julie talk about love, and then reading their poetry, gives a palpable sense of the relief that comes with the discovery that love can be real and reciprocated. Many of the poems in The Marriage Vow, their book celebrating the joys of wedded bliss, are, truth to tell, a little saccharine for my tastes:"Love / So simple a word, / Just one syllable / Ah! The married life!" writes Julie, while Adam writes, "My dear... / When you're ready you'll reap / The heady grapes that are caught / in my glass of wine." But it is refreshing, nonetheless, to think that someone, someplace, in a deconstructed and cynical world (and Adam and Julie have as much of a right as anyone to be deconstructed and cynical) still believes enough in love to write poems praising its virtues.