On a recent Sunday afternoon, as I pushed a cart in the aisle between the checkout counters and the racks of men’s shirts at Walmart, the song that went though my head was Brian Eno’s “Here Come the Warm Jets.” Even though I was in Walmart—a store that Heather and I usually try to avoid at all costs (i.e., despite whatever savings may be available there)—that moment of rolling the shopping cart through the gauntlet of cashiers and racks of men’s casual wear was nothing short of beautiful. That I would feel so calm at the Front Royal Walmart—which to me normally felt like some strange planet where at any moment I might find myself surrounded by hideous lizard-like creatures who want to eat me (or, worse, mate with me)—was, somehow, moving. And as I calmly pushed the cart through the store while trying to find where Heather and Maggie had gone—a task which would usually make me quite tense and agitated—I felt what can only be described as a sense of triumph. The song, of course, had a lot to do with it.
Something I’ve discovered is that some of the most annoying, unpleasant, and sometimes even horrible moments of one’s life—or at any rate, my life—can be transformed by the soundtrack I have playing in my head. Just a day earlier I was driving on Commerce Avenue, on the way home after dropping Maggie and Heather off at a birthday party at the city pool. In the distance I noticed a crowd of people had gathered outside the town’s government center, a dreary box of a building around which I never seemed to see much of anything going on. As I drove closer I saw that it was a demonstration by the Front Royal Tea Party. Reading their signs—with messages like No Amnesty for Illegal Immigrants and, simply, Stop Illegals, I found myself, all of a sudden, surprised. And what surprised me was that, when I was close enough to read their signs and for them to see me, I did not give them the finger.
I am not the most polite person in the world—I gladly give in to the urge to say things that are overly blunt, inappropriate or which simply cross the line from tongue-biting politeness into overt hostility. What’s more, I enjoy it. This time, upon seeing the Tea Party in person after having only seen them on television or on clips from YouTube, I was very much in the midst of a situation where my gut reaction would have been to give them the finger. But at that moment I was playing Parliament’s “Bop Gun (Endangered Species)”—a song which always makes me feel empowered, alert, and less vulnerable:
Turn me loose
We shall overcome
Where did you get that funk from, huh?
With P-Funk playing in my car I also felt, despite the presence of the Tea Party goons, as if I were somewhere other than Front Royal. And, whenever I’m somewhere other than Front Royal, I usually feel pretty good.
But music, for me, isn’t just something that heightens my mood. Music is also something that, when it engages me to a sufficient degree, keeps away those urges that are part of my Tourette’s syndrome—the urge to grimace as if I’m about to scream, to make grunting or squealing noises with my throat, or to hit my leg with my hand or with my elbow. It’s a way of existing that might be described as dreamlike—in particular, those dreams where you’re trying to get away from some bad guy, or trying to lock the door, but you can’t, because your movement has been slowed down and your legs and arms, even though they’re moving, aren’t moving you ahead or pushing the door shut. With Tourette’s, what slows you down is that there are so many movements that you feel compelled or forced to make before you’re able to make the movement you want to make. And with me, it’s always the more mundane activities that get interrupted by a series of Tourette’s tics—brushing my teeth, washing the dishes after dinner, and cleaning the cat’s litter box are invariably interrupted by the urge to bang my elbow against my side or to grunt several times in a row or to look up at the ceiling and make the face of someone screaming at the absurdity of the cosmos. Sometimes even walking up the stairs gets interrupted by Tourette’s, with me having to repeat those first few steps—until it feels right, until I’ve got the right thoughts in my head—before I can proceed all the way to the top of the stairs.
Compared to some people with Tourette’s, though, my tics are nothing spectacular. Certainly I’m not in the league of a surgeon Oliver Sacks wrote about in the New Yorker a number of years ago whose Tourette’s drove him to, among other things, regularly lunge at the ground or touch people with the heel of his foot. When the surgeon was overcome by moments of rage (another common symptom of Tourette’s) he’d throw pots and pans in his kitchen or throw punches—the many dents in his refrigerator and holes in the walls of his house were reminders of those episodes. Luckily, for me, those moments of rage don’t carry with them the urge to fling objects or hit walls, and are expressed in a relatively polite fashion by simply screaming FUCK so loudly it feels like my throat is being ripped apart.
As for other common vocal manifestations of Tourette’s, I don’t exhibit echolalia (the automatic repeating of another person’s words) or coprolalia (the frequent and involuntary use of swear words or other obscene language) which are perhaps the most well known symptoms of Tourette’s syndrome. Or, at any rate, they happen with me very rarely. In the last five years the only thing I remember doing is when a man at the subway station in Alexandria was carrying several bags of groceries as he rushed to catch his connecting bus. When he said, “Excuse me,” as he tried to get around me to make a path to his bus I said in response, without anger or irritation—and, certainly, without any reason—“Fuck you.”
He was, as one might expect, furious, and began screaming at me. If he hadn’t been in a hurry with his groceries, he may very well have tried to punch me. (It always amuses me to consider that if something like this had happened in my wilder days, when I had been, say, incredibly drunk or tripping on acid, I probably would have thought, “Oh, wow, he’s got Tourette’s too.”) This sort of thing happens rarely with me—I’m just about always able to keep the inappropriate words that pop into my head in my head, without them being spoken. Still, I am disturbed that one day, here in the valley, that control may slip, however briefly, and I may find myself crossing paths with a man getting out of his pickup truck on which he proudly displays the Confederate flag and a half dozen pro-gun bumper stickers. Invariably, on seeing one of these gun-loving supporters of the Lost Cause of the Confederacy, one obscenity or another will be going through my head (though in cases like this it isn’t necessarily Tourette’s that’s bringing these words to mind). And though the chances are small, there still is a chance, that one day my control will slip at exactly the wrong moment and, as I’m passing by this man I’ll declare, “The Confederacy lost, bitch” or “I fucked your mother yesterday” or “Nice tits!”
And it could happen, because since moving here to the Valley, away from the city in a place where the pace of life is slower, my Tourette’s symptoms have gotten markedly worse.
As with most Touretters, my symptoms first started when I was around nine or ten. What was probably my first real Tourette’s incident of note—of course I didn’t realize this until decades later—occurred when I was sitting with my mother outside church one pleasant autumn evening as we waited for my older brother, Tony, who was at choir practice. My mother had been speaking to one of the other parents—an older woman, Mrs. Blaine—whose son was also at choir practice. She was a nice woman, but also perhaps one of the parents I saw as being vulnerable or weak. Mrs. Blaine and my mother were casually making small talk when I suddenly, for no apparent reason, spat on Mrs. Blaine.
Needless to say, I was in trouble, and in those days when spanking was still the norm, spitting on another parent in your mother’s presence was definitely the sort of transgression that would get you spanked. My mother and father had no idea what was going on with me—and, of course, neither did I. Mrs. Blaine was an unassuming, unthreatening person who, as far as I knew, had never done anything that would make her worthy of being on the receiving end of my apparent expression of contempt. I wondered if, maybe, I was just a little bit nuts—“nuts” being the sort of word I used back then, whereas, if I were going through this for the first time today, the words that would be going through my head would be, “Man, I must be fucked up.”
That what was going on with me was either a disease or a disorder was beyond me—and pretty much everyone else as well. Back then, in the sixties and seventies, there weren’t even many doctors who knew anything about it. At home, my parents and my brothers just thought of it as my generic nerve disorder—and, luckily, spitting on people didn’t become a regular tic (or at any rate, it was a tic I was able to control).
When my Tourette’s first developed, the tics I exhibited most often were a widening of my eyes (the sort of expression one makes when one is incredulous or thinking what the fuck?), frequent blinking, and the incessant shrugging of my shoulders. Up until seventh grade, my tics didn’t really create any problems for me in school. One friend of mine simply wondered, “Why are you doing that with your eyes? It makes you look like a retard.” But when the school I’d been attending closed and I had to switch to another one for eighth grade, it was a different story. Because at my old school my symptoms appeared gradually, getting slightly more pronounced over the course of a few years, they weren’t shocked or surprised by them. At my new school, with me being the weird new kid who’d just transferred there, I soon found myself being mocked by about half of class. Whenever Sister Conrad had her back to the class while she wrote on the blackboard, one or another of my classmates would look at me and start blinking and rapidly shrugging their shoulders. Not surprisingly, I was a lot different then from the way I am now, and instead of smacking them or telling them to fuck off as I would today in response to some sort of affront, I just remained quiet or looked away, feeling pretty much helpless.
What helped me get through this was that it didn’t take me long to demonstrate that I was smarter than any of the goons who were making fun of me. And back then—or, at any rate, in that particular classroom—you could still gain the respect of the goons when you showed them that you knew your shit (I’m not so sure that this is still the case in many places in America today). Which meant that knowing all the answers to the questions my teacher would ask in class and subsequently winning an academic scholarship to high school helped. But still, in those days, I wouldn’t have minded being just a normal fucking kid. In fact, I probably wouldn’t have minded if I were just a regular fucking goon, because when you’re a kid perhaps the most realistic dream you can have is for things to become just a little bit easier. And, as is usually the case with these things, it wasn’t until I was much older that I learned to appreciate being a misfit weirdo.
So I moved ahead, with my Tourette’s, shrugging my shoulders and blinking my way through the first few years of high school. Then, after my junior year, I won a National Science Foundation grant for a summer program studying chemistry at the University of Georgia. It was there in Athens, Georgia, where one night the girl I’d started hanging out with introduced me—after we’d gone to a showing of Citizen Kane on campus (she was obsessed with Orson Welles)—to cigarettes.
For me, at least for a little while, smoking was good. Because for people with Tourette’s, one thing that often seems to help (and doesn’t turn you into a zombie like the drugs doctors prescribe) are cigarettes. Smoking cigarettes, I felt pretty fucking good—and not because I suddenly felt I was cool. I didn’t know it at the time, but smoking helped me feel a little more stable, like someone who could get shit done.
Even though I don’t smoke anymore and can’t stand to be around them now, I can’t imagine what my life would have been like without cigarettes. Obviously, I’d be healthier now than if I’d never smoked, but there was something about cigarettes—about nicotine, about breathing smoke in and out and watching it disappear like a ghost into the far corners of a room—that helped me focus and give shape to what was going on in my head.
Indeed, when I had my first cigarette was when, for all purposes, I became a writer. Up until then everything I was studying was leading me toward some sort of career in the sciences. Well, okay, there was also time spent reading, on my own, everything from James Joyce’s Ulysses to Jack Kerouac’s On the Road. But until my first cigarette, working in the sciences was the only thing that seemed practical—which isn’t to say that I thought becoming a writer was practical. Still, during my senior year in high school I applied to go to college at Cal Tech, which accepted me and offered me a full scholarship. But, since I had resolved to pursue the less practical course, I turned Cal Tech—and the full scholarship—down.
As if it weren’t enough to turn down Cal Tech—and the power a degree from there might have to make my resume rise like smoke to the top of a pile—the kind of writer I wanted to be was the kind that had the least potential for making money. Yeah, I wanted to write poetry. “Christ,” I thought after writing Cal Tech to turn down their offer, “I must be crazy. Or an asshole.”
Since I didn’t want to teach, being a poet meant that I’d have to find another way to make a living. I didn’t have too hard a time finding a job, and eventually ended up at the Library of Congress, where one supervisor admitted that when he interviewed me, he noticed my tics, and thought I was fucked up. Somehow, I still ended up with the job.
And so I wrote my poems. And eventually started to get my work published. And eventually started doing readings. And eventually came to be known—because of the way I presented my poems at a reading—as aperformer. And all it took for me to be labeled a “performance poet” was to be totally drunk when I read. So, while some poets memorized their poems, rehearsed, and experimented with different ways of reading their lines, I wasn’t about to do any of that shit. Instead, before any reading, I saw to it that I had more than a decent number of drinks in me. And, for me, it worked.
And all that time, through the rest of the 80s and all through the 90s, I continued to smoke. And drink, which, very conveniently, also seemed to help with my Tourette’s. I smoked and drank at a pretty high level for a little over a quarter of a century. But when it was time for Heather and me to start getting ready to have kids, smoking seemed like something that I had to, at last, be done with, and in October of 2000 I went cold turkey and quit. As for the heavy drinking and hanging out at bars and all that, I just slowly lost interest in it.
Heather and I had moved to Old Town Alexandria by then and, after several years without steady work, I now had a full time job. By then, I’d also pretty much stopped writing poetry, as I was now mostly working on a novel I’d started when I was living in New York (and which I still haven’t finished). I was living, more or less, a pretty typical existence.
It didn’t happen right away—I must have had spare nicotine stored away somewhere in my body—but my Tourette’s tics gradually became harder for me to control again. For twenty-five years I didn’t really have to think about it much. But now it was starting to bother me again. I was finding it harder and harder to be in public and control my tics. Just sitting down at a goddamn Starbucks, I’d look like someone who’d had way too much coffee even before I’d had my first sip; and going to the movies while trying but failing to completely suppress my tics just wasn’t the most relaxing way to spend a Friday evening anymore.
So, for the second time in my life, I went to see a neurologist about my Tourette’s. The first time had been some twenty years ago. My symptoms weren’t that bad at that point, but I was curious about what was going on with me. This first doctor was young—he was also, I thought, kind of a pompous dick. He performed a number of expensive tests on me, after which he said, sitting smugly on the other side of his massive desk, “I don’t see anything wrong with you.” When I asked for him to consider that I may have Tourette’s, he simply said that there were “other symptoms.” As it turned out, I knew more about Tourette’s than he did, that the battery of tics and twitches varies from person to person, that not all Tourette’s suffers present coprolalia or echolalia.
The second time I saw a doctor about my Tourette’s went much better. This doctor was an expert on Tourette’s—plus, he suffered from it himself. He was kind of blunt and when he spoke he mumbled; now and then he’d simply grunt in response to something I was saying. But he really knew his shit—and right away, he was able to confirm that, yes, I did indeed have Tourette’s. And, since my symptoms had become much more pronounced again, I was ready to try whatever he could prescribe that might help suppress my tics. But the first thing he prescribed didn’t seem to have any affect at all and the second medicine he tried almost made me feel like I was tripping, and, after trying to drive one time while on this medication, I decided that this wasn’t going to work either. When I asked him what else might work, he said that unfortunately that was it. There was one group of medications that was usually more effective, but I would probably feel even more whacked out on them. Then the other group of meds he could try would be dangerous to use because of my heart condition. Which meant that, like a lot of other Tourette’s patients, I would just have to live with it.
So I did, and as it got worse since moving here to the valley, I stopped fighting it to a certain extent. Because although I prefer making a spectacle of myself by reading my work to an audience rather than by sitting at a coffee shop and making weird jerking movements and odd noises, there was one good thing about Tourette’s—and that’s what it does to my mind. I’m not talking about those moments of rage, of course—those aren’t pleasant for me or for anyone else. That Heather and Maggie are able to live with it—early on Maggie discovered, as she put it, that “Daddy is noisy”—is something for which I’m infinitely thankful.
No, what I’m positive Tourette’s has done for my mind is to free it. Because since it’s gotten worse, I’ve found it easier for me to write, and one of the reasons that it’s become easier to write is that there really isn’t much stopping my thoughts from going in any number of directions. And a lot of times the thoughts that come to mind are completely inappropriate for the situation or else are totally unrelated to whatever I’m doing at the time. For me, as a writer and as a poet, that’s a good thing.
An example of this occurred when Heather, Maggie, and I made our first trip up the valley to Berkeley Springs, West Virginia. I was middle of my first big bout of depression here, and making trips out of Front Royal, I discovered, helped immeasurably in lifting myself out of my depression. After walking around Berkeley Springs for a bit we found the Ice House arts center there, and, while looking at an exhibit of some beautifully handcrafted papers, these words popped into my head:
“When I moved to New York I got a job with Nice Titties/Show Us Your Cockmagazine.”
I had, of course, lived in New York, and I did actually have a few paying jobs there. But, there never was—as far as I know—a magazine called Nice Titties/Show Your Cock, and I certainly never worked for such a magazine.
But that’s the way my mind works at times, and I’ve always taken this to be some kind of internalized coprolalia—which is to say that while the inappropriate, obscene words do unexpectedly go through my mind, they aren’t often accompanied by the uncontrollable urge to say them out loud. I may, at the very least, have what one might describe as a coprolaic mind. And, if this is indeed part of my Tourette’s, it’s the part I wouldn’t want to do without.
So, as we walked through the exhibit, and looked at the post cards and trinkets at the Ice House gift shop, I continued to go with my odd thoughts to compose a poem in my head. Except for an actual quote that I dug up later from the New York Times, I composed the entire poem in my head in about ten minutes:
Flesh and Memory
When I moved to New York I got a job with Nice Titties/Show
Us Your Cock magazine. We were the competition and I wrote
the captions. Whenever the Village Voice used the phrase “post-
modern urban griot deconstruction” I added the words “Nice titties!”
beneath the photo of a b-movie actress wearing a low-cut blouse.
Whenever the New York Times said “Mr. Pynchon improvises
like a jazz musician” I typed in “Show us your cock!” beneath the
shot of a man wearing tight boxer briefs. Life was good. But when
the 21st Century arrived things changed. “Dick” was the new “cock”
and “titties” could never be referred to by the same word twice in an
issue. It was too much to take, so I left the magazine, which folded
three years later, and finally I left town. Whenever someone asks
me what it was like I tell them that it’s something I’ll never forget.
And whenever they show me photographs of their kids I just nod.
But it’s not always dirty words that pop into my head. Another time Heather and I were putting Maggie to bed when the words “When I was a kiss and the world was an elephant I didn’t want to touch because if it didn’t like me it might crush me, I’d bend over forwards or backwards and twist as if I were dancing but I wasn’t dancing.”
After Maggie fell asleep I walked down the hall to our office and finished the poem in another ten minutes:
When I Was a Kiss
When I was a kiss and the world was an
elephant I didn’t want to touch because
if it didn’t like me it might crush me,
I’d bend over forwards or backwards and
twist as if I were dancing but I wasn’t
dancing: I was stepping away from the
flames and jumping over sinkholes that
opened in the street or just listening to
Side B of a 45 before Side A because
one way to do battle when I was young
was to know what other people didn’t know
was right under their noses. Sometimes that
meant knowing something they’d never know,
which was sort of like tying the elephant’s trunk
in a knot and laughing, then walking away
until the elephant starts to miss you.
When I lived in the city, usurped by the
dulled sheen of a road that’s been stepped
upon too many times, I still knew which way
to go, and I went there to follow, only, you.
Since coming to the valley I’ve written enough to fill three books of poetry. I’ve been sending out two of the manuscripts I’ve compiled and have been a finalist or runner-up for several decent poetry awards. I suppose there are things I could do to my work to up my chances, to make my work a little less idiosyncratic so that it will appeal to a wider range of judges, but I’m not about to do that. I’m not interested in widening my audience. I don’t want to be liked by everyone. Growing up with Tourette’s, you get over the desire to please everyone pretty fucking early in life.
And so in the course of three years here in the valley I’ve followed these odd paths my thoughts have taken. And between the episodes of rage and those moments when my mind is overcome with irrational terror—those times when I’m sure some horrible thing can or will happen to me or my family—between those times I find some odd sort of coherence or wisdom, even. It’s not easy, because it feels, sometimes, like I’m repeatedly having to tear down then rebuild my concept of the world and how it works and where I fit into all of it.
But then, since I was very young, I’ve felt that life and existence were Sisyphean in nature, that you could never actually be something. And so, as far as being normal or stable or even just calm goes, I’ve resigned myself to the fact that those are things I can only approach, because once I think I’ve gotten there I have to start all over again.
As for those moments of rage, it’s hard to know how much is simply disposition or attitude, or where actual anger ends and physical disorder begins. There are times, as far as I’m concerned, where it is appropriate to insult someone. There are a lot of people who need to have the words Fuck You directed toward them on a regular basis. In fact, there seem to be more and more of them every day. And I see them, in the distance, as I approach them, unable to do anything but approach them as my mind fills with words I can’t control. Because, in the end, I really have no say in the matter—and I have no choice. It’s what I have to do.
— by Jose Padua