Daphne_A Novel Page 3
If anything, the condition is closest to narcolepsy. You know: People fall asleep right in the middle of the day. Their brain commands them to nap—they nap. The cop who thought I was sleeping on that bus bench, who poked me like I was just another sack of human misery, he was far from the first to make that mistake. I used to have a little speech: “I might look like I’m dozing or passed out drunk. But I’m awake. I can hear everything happening around me, everything you’re saying. When it’s really bad, I can hardly move a muscle. But I’m awake. I’m not here, but I’m here.” A warning—a plea—to new friends, roommates, professors, potential employers. Before I learned to corral my feelings, I had to make that speech all the time.
So, narcoleptics sleep during their episodes. I, on the other hand, am simply paralyzed. Most narcoleptics feel their naps arriving and know to get ready. I get less notice. If I can sense a particular feeling shoving its way in, I’ll kneel or sit down, get myself into a safe position. In a pinch, I’ll lean against a wall. This sometimes works for joy or sadness or fear—emotions that can emerge slowly, from a generally brightening or darkening mood. But anger? Laughter? Surprise? Those usually burst on us too quickly. Anger is too volatile and sudden. Laugher is spontaneous. And how—Jesus, how—do you prepare yourself to be surprised?
Somewhere in the tangle of the brain’s wiring, there’s a connection between the two syndromes: In narcolepsy, deep REM sleep suddenly clamps down on the waking day. Have you ever woken from a dream and found yourself unable to move? That’s REM sleep shutting down your body—everything but the vital systems—so you don’t act out a dream, don’t thrash around or hurl yourself out of bed or punch your bedmate in the face. It’s thought, with my condition, that the brain somehow confuses strong emotion with that trigger for deep sleep, that sudden command to switch off the muscles. It’s thought, with my condition, that this has to do with the absence of a certain neurotransmitter in the hypothalamus. It’s thought that this is caused by an autoimmune disorder, that around puberty my body launched an all-out attack on that part of my brain and wiped out this rather key mechanism.
It’s thought.
Because, in the hierarchy of human frailties, there is so much other research to pursue. And so much of it is sexier/more lucrative. Dr. Bell and a handful of other specialists published a new study or paper every few years, attacks on each other’s work, theories that were never verified, seeming breakthroughs that could never be repeated. For a time, I tried to educate myself, tried to keep up with the literature, the impenetrable discourses on “excitatory neuropeptide hormones” and the “homology of hemagglutinin epitopes.” In college, I thought I was going to be an English and bio double major, a neurology researcher who understood the entire human animal. I kept at it, B minuses right through junior year, when I finally dropped both and switched to com-sci. But I tried so hard. I was going to educate them all.
In the end, I just didn’t have the head for it.
I WOKE LATE the Saturday after the Pit Stop, muzzy, wrung out, trying to swallow down a coppery burr in my throat. The outlines of a dream—two men sitting on a raft on a river like diamonds—dissolved into the sunlight blitzing through my windows. I rolled heavily out of bed, creaked down from the loft, tried to slot myself into my Saturday routine:
Pack my Bialetti, fill it with Volvic. High heat with the top open, just till it starts to boil, then very low heat, get some crema in the espresso. Squeeze the oranges for juice, Cara Caras or blood. Omelet, nothing complicated, I want to taste each ingredient: a soft cheese, a cured meat, whatever vegetable curiosity comes in the CSA box each week. Micro-green salad, oil, balsamic, sprig of thyme, one twist Himalayan pink, one twist Indian black. Set the table, wake up the apartment a little, TV on mute, NPR aw-shucks-ing over some almost-funny quiz show, fork in one hand, phone in other, thumbing through new apartment tours on Interior Life. Little hits of admiration and irritation—I’d been submitting my own apartment photos for years and still nothing—keep thumbing anyway. Pattern, repetition, small, comforting tasks—with the constant low buzz of stimuli, there just isn’t time or space enough to really feel.
I sent an exploratory text Brook’s way. Sorry to run out on you just couldn’t deal with crowd text me okay? But Brook wouldn’t be up for hours. And, truly, did I want to hear about the club or SoMa penthouse where she’d ended the night, partying to get more business throwing parties? I tossed my phone aside, went over to my bookshelf, reclaimed pine dredged up from the wreck of a Lake Superior steamboat, ran my finger along the spines of my books—Koolhaas, Hadid, Smithson, Serra—flopped on the couch, and read Le Corbusier saying something about space and light and order.
At two-thirty, I started pacing. I didn’t need to go. What was the point in going? No one ever made any progress. There was no progress to even be made. I flipped channels on TV, skirted pat the news. Aerial shots of writhing public squares. Shaky footage of young men in stiff-fitting jeans shouting, waving flags, hurling bottles and stones at riot squads. Bloodied faces. Police dragging a beaten woman by her coat, her clothes torn open, one of them with his boot poised above her, about to—
I turned the TV off and called my car service. “371 Capp,” the dispatcher said brightly, “thought maybe you wouldn’t be needing us today!”
The car arrived. I tried to do my hair and makeup on the way. In my compact, my face bobbed up and down with the car’s suspension. Classical, slightly humped nose, broken from a fall junior year and set as well as the campus ER cared to do. Full, rosy cheeks that taper into a pointed chin—my mother’s. My eyes are my dad’s, an icy, riverine blue that people often call “disarming.” “Inscrutable,” that’s another I get.
Outside the side entrance to the church, men were blowing over cups of coffee and smoking. A few were broken down and frazzled, but others were tanned and muscular, V-necked tees showing off biceps and chests, smiles weary but gleaming white. An all-gay AA group. “Late again to the temple of penance,” I said as an action-figure-handsome guy held the door. “We forgive you,” he whispered. “It’s in our contract.”
The church was Korean Methodist. I’d never actually seen the church proper, only the rented basement meeting rooms. The bulletin board in the stairwell was a catalog of vice and frailty: Pills Anonymous, Gamblers Anonymous, debt management, video game and internet addiction, another group for gamblers who only did scratch-offs. Half of human life seemed to be backsliding, compulsions, near-automatic behavior—people flailing against the frantic imperatives of their addled minds. The hallway stank of the vinegar they used to flush out the big coffee urn in the kitchen. Nose wrinkled, mood contorted, I eased open the second-to-last door.
The group, seven of them that day, all turned to watch me come in. Sherman’s eyes fluttered, his head dipped. I’d taken him, very mildly, by surprise. Sherman, our organizer, our beacon of optimism. He wore white linen trousers and a pressed checkered shirt, and his brogues were buffed to a high shine. He always dressed up for meetings. As his head bobbed back up, he lit up to see me. “Daphne, so glad you could make it!”
“Sorry, everyone, sorry.”
I dragged a desk over to the circle. To those who didn’t know I was habitually late, when I came at all, I mugged a presidential level of contrition. Many in our group had been coming for years, though it wasn’t uncommon for someone to drop out for months at a time, only to return looking even more desperate. In this metropolitan area, our numbers might well have been larger. The condition isn’t so astoundingly rare, one in ten thousand (it’s thought). But getting a diagnosis remains a total crapshoot. It’s a half-paragraph in a med school textbook, a quirky human-interest piece that crops up maybe a couple of times a decade. Most of our group, it had taken them years to find out what the hell was wrong with them, why they kept falling down when someone told a good joke, or wilted like a drunk if something blindsided them or pissed them off. A lot of people with the condition may never even make that connection. Emotion, after all
, suffuses and influences everything we do, everything we think, everything we are. We’re absolutely pickled in it. Who would guess it could, quite literally, paralyze you?
I looked around. There was Russell, a jumpy young guy with his arm in a sling and a livid scar across his forehead. Driving can be so rhythmic and calming. But Russell is a case in point why so few of us actually get behind the wheel; a couple of months ago a jag of road rage landed him in SF General. Worse, he kite-surfed, mountain-biked, free-climbed, did other lunatic things. He’d only recently been diagnosed. The limitations hadn’t sunk in yet. He didn’t seem to realize just how easily they could get him killed.
Then there was Miranda. She taught poli-sci down at SF State. A sharp one, Miranda, hard to bullshit. And so depressed that, as a bonus curse, she’d eaten herself into type 2 diabetes. She worried constantly about switching off in front of her students. We were always telling her just to come clean with them. But she couldn’t, she said, not when she had to command a lecture hall full of squirrely undergrads. I agreed with her. A woman just couldn’t relinquish that control.
Next to her sat Teshawn, who came over from the East Bay. He did shift work at a cold-storage warehouse, picking orders and loading trucks. It was the kind of work, people and forklifts flying around, where a slip-up meant getting yourself or someone else hurt or worse. So Teshawn medicated himself, hard. There is no cure for the condition, and the cocktail of pharmaceuticals that seems to suppress attacks dulls everything, turns you vacant, affectless. The world dims to a shadow play. All of us had tried the drugs at one point or another and found that no amount of coffee or pep pills brightened the picture. Teshawn had no choice but to take them. Now and then we glimpsed his charm, his true playful, funny, outgoing self. But only in glimmers.
The rest of the circle were part-timers, faces that came and went. Only Sherman showed up every single week, devoted as he was to organizing our little group of headbobbers. Almost anything could trigger him: the dumbest little joke, a weepy song on the radio, sunlight playing prettily on the floor. His bonus curse: an exquisitely sensitive soul.
“I’ll catch Daphne up on business at the end,” Sherman was saying. “Bill, you were talking about your son’s birthday party?”
How could I forget Bill? Tanned, crew cut, early forties, polo and khakis, acting the part of the FiDi trader with a fat watch around his wrist and the world by its neck. But we all knew who drove him to every meeting. Bill depended on his overburdened wife for everything, yet cast himself as both the hero and victim of every story.
“Well, it started out so perfect,” Bill said with a tight smile. “Danny’s at that age when everything’s a discovery. He’s just perfect to me, like his mother. But seeing him with all his friends, all those cute little five-year-olds, I just couldn’t take it. My heart was practically bursting. And that’s when I started to worry.”
Murmurs of recognition and concern flitted around the circle. My phone vibrated in my bag. Brook. Hey, lady, don’t blame the crowd. I saw you walk out with that young fella. Holding my phone under the swing-top of the desk, I tapped out a reply.
He just walked me home no big deal how’d it go with Halloween?
“For the first half hour, I was good,” Bill said. “Just a few funny faces.” Funny faces, our shorthand for fluttering eyelids or a sagging jaw, minor attacks. “Then Carianne brings out the cake. You should’ve seen Danny’s face. Plus, all the kids have kazoos—Carianne bought a bunch of them somewhere—and they’re all playing ‘Happy Birthday.’ What a sound! Me, I’m hanging back, working the camcorder, videoing it all. For some reason, it helps. Maybe I’m like the observer, not the participant?”
“Interesting.” Sherman made a note of this, as if it were useful advice: You could self-treat by carrying a goddamn camcorder around the rest of your life.
Halloween, yeah, maybe something there. He dragged me to this thing. Everyone was on DMT. Sort of fun. You see elves.
Jesus Brook . . .
But, come on, who was your guy? Bass player? Academy of Art student? Rainbow Grocery bulk foods guy? At least he was cute.
“But the kids, Danny, the kazoos, it’s all too much,” Bill was saying. “I’m videoing away, but I feel the joyousness welling up in me. It’s going to break loose any minute, and I’m going to face-plant right into the cake or something. So I put the camcorder down, leave it recording. I run for the bedroom, flop down on the bed, and just have to lie there, listening to them all singing and kazoo-ing.”
Sure he was okay—I hesitated to tell Brook about the kiss—I gave him fake number would’ve been shit show anyway.
“I let myself go, just let the damn episode happen. I’m sprawled on the bed, I don’t know how long, and all I can do is listen, just listen while they’re all having a blast out there. Christ, the kid only turns six once, and I only get to fucking listen to it!”
Bill was getting worked up. No self-control. A wonder he didn’t slide right out of his desk. I could hear the despair in his voice, and the resentment, not just of the condition, but of his wife, his son, all of his son’s little friends, everyone who didn’t have to worry about face-planting in the cake.
Brush it off, lady. Mezzanine, this Thursday. We’ll go early, get set up with a booth. I know a couple really sweet guys who DJ there. It’ll be chill, really.
“Carianne said Danny didn’t even ask where I went off to. He knew I was having ‘daddy time.’ Normally, we would’ve watched the video later on. We would’ve at least had that to share. But I left the goddamn thing pointing the wrong way.”
More sympathetic murmurs from the circle. I cringed at the sound. The vinegar from the hallway had drifted into the room, curdling my stomach again. My thumbs flew. B that’s YOUR life what the hell am I supposed to say to a DJ or do at a club especially if you’re working again I mean Christ I WANT to but really—
“What do you think, Daphne?” Sherman said. “How do you respond to Bill’s experience?”
“Sad,” I said, dropping my phone into my bag. “Very sad. It’s like you’re not even there for your own life. You’re there, but you’re not there, you know?”
Bill gave me a sour look; he’d seen me on my phone. But the others nodded. The ones like Bill, with spouses and families to look after them, they did all right. The others had to get by with help from friends or neighbors. Some of them got disability, checks from the government, assistance from hired carers. A lot of them—including Sherman, who did web design—worked from home. Telecommuting and the internet had been a godsend for them. My company offered me at-home days a few years ago. But I wouldn’t be shuffled into a corner. I wouldn’t let the condition run my entire life.
“Come on, Daphne,” Miranda broke in. “That’s easy enough to say. Let’s talk about strategizing. You should’ve discussed with Carianne before the party,” she said to Bill, “come up with a real plan.”
“God, I don’t even pick Danny up anymore!” Bill said. “I’m too afraid I’m going to drop him!”
The emotions of others affect us unpredictably. Sometimes they resonate like a struck bell. Just as often they clank and mean nothing at all. Bill’s story was sad, yet, today, it couldn’t reach me. His mouth was gaping. The snack tray was just behind me; I could’ve reached over and popped in a cookie.
“Bill, sorry to cut you short,” Sherman was saying, “but we’ll have to continue this next session.” I’d come so late the meeting was already over. “Anything before we go?” Sherman said. “Anyone?” He always got an eye-fluttering thrill from what he said next. “Until next time, everybody, stay safe, stay open.”
As I got up to leave, Sherman called to me, “Daphne, I’ll give you that info I mentioned.” The rest of the group trickled out, chatting and checking in with one another as they went down the hall of frailties.
“What info?” Then I got it. “Ah, another study.”
Sherman pushed a hand through his shaggy, rather beautiful brown hair. He adjusted
his shirt, smoothed out a wrinkle. “Yeah, a new one down at Stanford.”
“The pay good?” I asked to be polite.
Sherman had made the condition his crusade. He wrote letters—to politicians, drug companies, universities, research centers—laying out the case for more funding, more awareness, more everything. He truly believed something could be done. “The pay?” he said. “Better than usual. And the guy running it worked with your Dr. Bell.”
“No kidding.” Dr. Bell, now that was some recommendation. “Well, wish I could. I’m just so busy right now.”
“Yeah, wasn’t sure you were going to show today.”
Sometimes I thought I came for a little boost in self-esteem. Comparing my own life to theirs made me feel better, made me feel like I actually had some control. But, really, these people were my weird little family. Not even Brook, not even my mother knew what it was to live with the condition. I often hated the group wallowing, the automatic sympathy. But maybe I needed to share in a little blind, dumb hope, too.
“Things have been crazy lately,” I said lamely. “Work and everything.”
“You don’t let it affect your career. We all admire that.” We started stacking desks. “And thanks for your contribution today,” Sherman said, an uncharacteristic wrinkle of sarcasm in his voice.
“I was moved by Bill’s experience, and I wanted to—”
“You know”—Sherman cut me off, very unlike him—“you could be an inspiration to them. The way you hold it all together on your own. They all think you know the secret or something.” He stood for a moment, letting his head bob. A desk started to slip from his fingers. I grabbed it. “Sorry,” he said, “it’s just, watching you disappear into your phone in the middle of a meeting . . .”
“The lab,” I lied, “they find me wherever I go.”