One afternoon when Patrick was four years old his mother took a nap on the couch, and he, wanting to wake her up, pushed a pencil into her eye.
The glass eye she wears now is perfect, and most people never know, but when she smiles at me and invites me into the car, that eye, her left one, looks to me like a part of her that isn’t smiling, a part of her that is still stuck in another day of another year, clutching and gasping, not sure if the puncture is truth or dream, while her son, the boy she nearly died to bring into this world, stands at her feet holding a pencil wet with the fluid of her eye, wanting candy.
“I wanted some gummi fish,” Patrick told me. “Apparently,” he added. He doesn’t remember any of it, but he knows the story.
The rest of Mrs. Newman does smile at me, but it is that broad, dumb smile healthy people give to me and never to each other. They don’t seem to know I can tell the difference.
Freshman year a kid at my high school named Jeff Kirkman got himself killed. Kirkman was a dumb jock jerk, not to be mean, but he was. He was the kind of guy you regretted meeting because if he knew you, he might prank you, or punch you, which to him was the same thing. But then he tried to beat a train through a rail crossing, and now he’s been mangled into memory. And memory gave that craptastic idiot a sweet and moral surface, shiny and clean. At the school service for him, I whispered to Emjay, “I’d like to meet the Jeff they’re talking about. The one I knew was a jerk.” And Emjay, who I thought was a friend, who I thought I could talk to, froze her eyes and dropped her brow and said, “Clarissa. He’s dead.”
Which is the honorific they already half-apply to me: I am the sick and dying girl, and so I live in that state of twist, a slow-motion half-mangle, transforming before their eyes into memory—not quite real, I am better than I am. I am the me they wish I was, sweetness and light, innocence and acceptance, strength and forgiveness. I am “an angel on Earth,” they tell me, come to bless them with the short, precious time I have.
“Emjay, you make me feel like I’m already dead,” I said it once when she called me an angel.
Her face pinched with horror. “How could you say that?!”
Even I am not permitted to challenge the lie of my own memory. I’ve been through this routine with my mother and father, teachers, my parents’ friends, my own friends: they’re all the same. Their eyes don’t seem to make it all the way to my face: they stop a few inches short and see my ghostly gleaming memory, wiped clean of any trace of me, hovering there, pure. People say they wish they could be there for their funeral, to see how people talk about them—I don’t have to wonder.
Patrick and I are always together, and our parents, being good sex-fearing conservatives, should hate it—but they don’t see us as teens with hormones tempting us towards the sin of fornication, they see sweet, quiet Patrick and an angel, made of light; they see their pity. Mrs. Newman drops me off at home, watches my failing (and if I’m honest, flailing) body work its way to the front door, and she says to Patrick, “It really makes you appreciate all we have, you know?” And she feels righteous saying it, like a good person, a good mother, a good Christian. Like most good people, she believes I have been sent by God to remind her of her own happiness. Imagine that. The woman whose son punched out her eye with a pencil pities me.
I step in the doorway and see myself in the mirror hanging in the hall; it’s oval, a little hazy, and it frames my head like a cameo. My face is tight and serious, from the effort of walking up the drive. My skin is smooth and very pale and sticks close to my bones. My hair curls up from the sweat of effort. In the dim light I look like etched ivory on blue glass. All of my expressiveness, every bit of who I am, is in my eyes. My two, brown, beautiful, perfectly working eyes. Fuck you, Mrs. Newman, I think, and I decide to struggle on to my bed, rather than just falling onto the couch, because it will be a long time before I’m strong enough to walk again.
A day will come, and it will be soon, when I will not have the strength to stand and walk farther than the bed to the bathroom. Not long after that, I won’t be able to walk at all. My feet will be cold, soft wedges always pointing through air. My control of my hands is already crude, but by then, my hands will be useless paddles. My legs and arms will lose the strength they have left. My mother will have to feed me, like when I was a baby. After that comes the feeding tube. At some point I’ll wind up in diapers, then the colostomy bag. My doctor believes I “can” live a few years like that, but she has carefully avoided asking me if I want to.
It started at the end of the eighth grade. In hindsight there had been symptoms for years: I’d been getting clumsier, but at that age when you’re clumsy, people call it growing pains. I got worse on the violin every year instead of better, as my fingers grew weaker, less coordinated, but everyone thought I just wasn’t interested, or wasn’t musical. Then my legs went out from under me during gym class, and I hit my head. Coach Will, in a fit of precaution, called an ambulance. Coach was pretty sure it was just heat stroke. It wasn’t. It was the slow and unstoppable degradation of the nerves that carry messages between my body and my brain.
I was thirteen and adults would clutch me close and say, “everything happens for a reason.” My aunt would say, “God doesn’t give you anything you can’t handle.” Statements so sure, said in a tone that intended comfort. Again and again: God won’t give you what you can’t handle. So I concluded God had nothing to do with it—someone else must have given me a neurodegenerative disorder, because clearly I cannot handle this. I am sick for a reason, they told me. There’s truth in that. I carry two copies of a particularly unfortunate strand of DNA. My mother carries only one. My father carries only one. I carry two.
But that’s not the kind of reason they were talking about. They were talking about spiritual reasons, and, let’s be honest, they were talking about themselves: to them, the reason I am sick is to remind them how wonderful it is to walk with ease, play the violin, run track, and live past the age of twenty-three.
And there are other things.
I told my doctor that I’m horny. She looked at me over her glasses and smiled uncomfortably. Reconsidering, she said, “Do you believe that’s a symptom?”
“It’s an issue,” I said. “Right now I’m relatively normal, but pretty soon, dating and sex won’t be an option.”
“Only about half the people your age have even had sex, you know. You’re not behind or anything.”
“If you count years from birth, yeah. If you measure my life in years before death, though, I’m way behind. I want to have sex before I’m strapped to a colostomy bag.”
“I’m not sure what you want me to do for you.”
“Could I get pregnant?”
“Of course. Just like anyone else.”
“That’s what I want you to do for me.”
She told my mother she was prescribing them to regulate my periods. She’s a good doctor, and she knows she will treat me through the end of my life, which is not far off. She is the high priestess leading me through the rituals of my disease. Compared to these mysteries, my mother’s Christianity is bag of platitudes. Or hammers. Or maybe just an empty bag.
Our church hosts a summer carnival, and this year I’m going with Patrick’s family. It’s as good as announcing from the loudspeakers that we’re together now. We eat two cups of soft-serve ice cream too quickly, before they melt, then walk past the games. I lean on his arm like some old-fashioned portrait of the fairer sex relying on masculine gentility. Every now and then we stop and watch someone we know throw hoops over bottle-necks or toss baseballs at cardboard monkeys. “Nice one, Mr. Ruiz!” he calls, and claps with me still hooked in one arm, like I’m like a purse he’s carrying. His clapping shakes my whole body.
“Patrick, I’m kind of woozy,” I lie.
“You want to go sit down for a while?”
“In the a/c,” I say.
“In the car?”
I nod. “I think I’m over-heated.”
We pass his mom on the way to the car, and she unlocks it from where she stands, making a “baby so sad” face as she pushes the keychain fob, her glass eye glazing like a dead fish in a bucket. Then she hands Patrick the key. I know she will check up on us in about half an hour, if we don’t return. I’m hoping by then it will be too late.
We climb into the dark, cool cocoon of his parents’ car. It’s a huge minivan with dark tint and a bench seat at the back, perfect for my purpose. He starts the engine and blasts the air. He changes the radio station from his dad’s classic country station to my favorite, the oldies. I know he will change it back before we leave – that’s Patrick. He tries to move through the world without leaving a trace.
“You know what would be really cool?” I ask, grinning.
He grins back. “What?”
“We should have sex, right here, in your parents’ car.”
His grin falls. “I don’t think that’s a good idea.”
“No one will see—the windows are completely dark, no one can see anything. And you know it’ll be a while before your mom comes to check on us.”
“I’m not worried about being caught. I just I don’t think it’s a good idea.”
“You say you’re my boyfriend now. Don’t you like me?”
“Of course I like you. You’re awesome. You’re beautiful, and probably the smartest person I know.”
“So why don’t you want to?”
“I’m just not ready for that.”
“When will you be ready?”
He looks down. His eyes and mouth are starting and re-starting in silence. He picks up a handful of quarters from the cup holder and pinches them into a cylinder.
“By the time you are ready, Patrick, I might not be able anymore.”
He pinches harder.
“By the time you’re ready, Patrick, I might be dead.”
“Can’t we just pray or something?”
I’m pretty sure he’s joking—I hope he’s joking—but I don’t laugh. “Patrick, I’m serious. You see how serious? Patrick, I need this from you. I need it. This is big. Super mega life-defining big. I need you to help me. You said I’m the smartest person you know. Well, I haven’t got a doubt, not a single doubt. Please, Patrick. Time is running out for me.” I feel awful saying this. Patrick is the only one I know who even thinks of me as a person, and I’m squeezing him crassly, just trying to get the prize.
He takes a deep breath. He looks out the tinted windows. Even in bright South Florida summer mid-day sun the car is dark. We are invisible. I half-stand and pull him towards the back of the van. I reach over and touch him, moving my fingers quickly, relishing the little nimbleness I still possess. I kiss him, loose-lipped and hungry. He consents by not resisting, so I stretch my fingers wide and touch him more. Too quickly, he comes—his face the picture of surprise. And then, at once, he starts to cry.
And I, because it is so sad, just so fucking sad, I start to cry too.
He leans towards me and weeps on my shoulder. I bear it as long as I can. Then I punch him with my thin, weak arm. I growl and punch and punch, like little slaps. “Damn you, Patrick,” I say. “Damn you, damn you, damn you.”
“I’m sorry,” he says, still crying.
“For the love of… fuck, Patrick, I’m dying! You can wait until you’re thirty if you want to, but I’ll be dead by then. And it’s not like I’m going to have sex with some jerk I don’t know just to do it. I want to make love with someone I love, and who loves me.”
“I know,” he says. “I want to. I just don’t know if I can.”
I thought I’d been watching for her, but she surprises me: his mother slides the side door open, letting in a wave of light and heat. “You kids okay?”
“Yes, Mrs. Newman, we’re just talking about stuff.”
“You all right, Patrick?” she asks, her good eye drawing a bead on his face while her glass eye stares at me.
“Yeah, mom. We were just talking about stuff that’s sad.”
“Oh,” she says, then takes a step back. “You kids are so strong,” she says nodding, and she gives me a sad, sympathetic smile. “So strong,” she says again. “I know I wasn’t so strong when I was your age. Okay. You know where to find us.”
She closes the door and gives us back our darkness. The car is hotter now, but the air is blasting loud and cold on my ears.
After a long, quiet moment I say softly, sadly, in a voice calculated to collapse his resistance, “Right now I can. But in a month or a week I might not be able to, and when that happens, that’s it.” I grab his face in my hands and make him look me in the eyes. My hands are burning and tingling now from all the movement. “A gift to me. Please. The most precious gift of my life.”
“I will try.”
“Tell me it will be soon.”
“Soon,” he says. He takes my hands from his face and squeezes them over where our knees touch on the bench seat. “But it’s not a gift. I won’t be doing it just for you. I’m going to do it because I really do want to.”
Patrick and I met at school. We had the same freshman French class. The teacher asked him a question in French, and he mumbled his answer, embarrassed to speak. She thought he’d mumbled an insult and sent him to the dean. He took the slip and started out the door, without a word. I stood up. “Hold on,” I said.
She looked at me with eyes round and brows arched, uncomprehending.
“He answered your question correctly,” I said.
“I heard him, Clarissa. He used the same immature insult the other boys were using before.”
“He didn’t. You just thought he did. It’s probably on your mind.”
“Thank you, Clarissa. You can sit down now.”
“No,” I said. “I’m not going to sit down and shut up while you punish a kid for something he didn’t even do.”
“Clarissa Hall you will sit down right now.”
“Are you trying to be a bitch?” I said.
Her face turned red. “You two can walk to the dean’s office together, then.”
I stared at her defiantly and exaggerated my difficulty walking until I was standing in front of her face. I snatched the discipline slip out of her hands. “If you are trying to be a bitch, you’re doing a very good job of it,” I said. My heart was pounding, my skin was on fire, but I felt right and strong. I’d never felt so strong. “Must’ve gone to the Bitch School of Teaching. Learned the Bitch Method.” The class giggled.
“You’ve been dismissed!” She nearly screamed it.
And Patrick took my arm and helped me out of the classroom. When the door swung shut behind us he smiled at me and said, “That was awesome.” And it wasn’t the smile I usually get, it was a real smile, a friendly, admiring smile. He was smiling at me, not at the idea of me, not at my disease. The week before, I’d watched a nature special with my dad, and there was a clip in it of a desert artichoke pushing out its scales to catch the rain. When Patrick smiled at me, that artichoke was my heart. I could feel it expanding, filling my chest, I could feel its barbs pricking the insides of my ribcage. I could feel it gathering those precious drops.
My mother views my life as a book built of greeting cards, all floral sympathy and cheeky jokes, so she read this incident as brave nobility (me) squaring off against small-minded bureaucracy (teacher), then turned the page. It doesn’t occur to her that sometimes I can be a real jerk. That I’m arrogant. That I’m angry. She will bury me at 17 or 27 thinking the same of me she would have if I’d died at 7 or 7 months: I am her angel sent from God to bless her life. When my illness gets worse, and she is burdened by my care, she will glow with martyrdom and the admiration of her friends. When I am long dead, she will wear my memory over her thighs like Mary wears Jesus in those pieta statues, her face still young; sad, yes, but beautifully unbroken. She will never understand how nasty and bitter I can be, because to her I’m not a full person. I will never disappoint her like a real daughter would. I will never vex her and upset her. I have tried. Everything I do she translates into a cartoon.
My mother started calling Patrick my “boyfriend” as soon as we were friends because he was my only male friend. But the truth is, he was my only real friend. Once I knew what it was like to talk to Patrick, the girls who had always made up my “circle”—Megan, Holly, Emjay—came into clear contrast: they were friends with each other, and they let me tag along because it made them feel good about themselves. Lucky girls, they got to feel superior and moral all at once. I still went to parties with them, and movies, and things like that. But I saved my secrets and my stories for Patrick. We grew closer slowly, and I avoided talking about anything intimate, but in three years he’d never once mentioned another girl. I asked him at the end of junior year if he wanted to be my boyfriend.
“I am your boyfriend,” he said. He was on the phone, so I couldn’t see his face, but he sounded genuinely surprised.
“No, you’re not! We don’t do anything together.”
“We do everything together,” he said, sounding like a kicked hound dog.
“Patrick, we’ve never even been on a date.”
“We’ve eaten lunch in school together every day for two and a half years. In the summers we talk on the phone or see each other every single day.”
“Yeah, you and me and bunch of other people.”
“It’s different with you and me.”
Patrick has always seemed a little shell-shocked, and I wondered if he was still living through the trauma of stabbing his mom in the eye, even if he didn’t remember it. He is fragile, and I am pushy, and I always had to make sure not to push him too far. I said carefully, “Patrick, let’s make it official. Will you be my boyfriend?”
“I told you I am…”
“Okay, fine. Then when do we celebrate our anniversary?” I was smirking my sarcasm, so of course he couldn’t see it.
“We met on October tenth. That was the day you called Mrs. Yates a bitch,” he said.
And I don’t know why, but when he said that, tears filled my eyes. I shook it off, and doubled down on my distant, sarcastic tone: “Geez, Patrick, are you in love with me?”
“Of course I love you,” he said, as though it was so obvious, it did not need saying. Then the line went quiet. He was confused again: the boy who woke his mother with a pencil to the eye was cursed to be perpetually surprised.
He comes to visit me after my fall. I was at the grocery store with my mother, leaning against the shopping cart as we strolled through the aisles. My legs have given out from under me before, but this was the first time my arms and legs went at the same time. I smacked my face on the handle of the cart and hit the floor. My mother left the groceries and carried me out. A year ago she would have had to get help. But I’m small enough now for her carry. I’m shrinking.
I call Patrick as soon as I get home and tell him what happened. In a few minutes he is standing at my bedside, gently tracing with a finger my cheek’s blooming bruise.
“I think this is it,” I tell him. “The doctor’s going to want to put me on braces. After that, it’s the chair.” In my mind I picture Old Sparky, Florida’s mean old executioner, with wheels.
“I’m just glad you’re okay,” he says. He is quiet, stiff. He stares at my pillow. Finally he says, “I don’t know how I’d live without you.”
“You will have to live without me someday, Patrick.”
“Maybe I won’t though.”
I don’t ask what he means by that. I know life, for Patrick, has never felt like a precious gift. When it becomes unbearable, he will throw it off like a weight. Maybe this is why we fit: he doesn’t look forward to all those years of life I won’t have, so I don’t make him feel “appreciative.” I can’t resent him for living a lot longer than me, when I’m not sure he will.
“Patrick,” I whisper, though there’s no one in the house to hear, “lock my door.”
“She went back to the store to finish shopping, and my dad won’t be home for hours.”
“I don’t know if I’m ready.”
“God, you’ve got to be ready. I’m going to be in braces!”
“What if I’m never ready? What if it’s just something I can’t do?”
“Is this because of your mom’s eye? What if I can promise that you will not hurt me?”
He looks up at me suddenly, alarmed. He shakes his head. “I don’t remember any of it, you know that.”
“Maybe that’s the problem. Maybe you need to remember it so you can deal with it.”
“If I could remember it, I think I would be a terrible person.”
“Patrick, that doesn’t make any sense.”
“If I remembered it, then I’d have to live my life, every day, remembering it. I’d have to know what I did and still…brush my teeth, and—watch movies, and—fall in love. How does that make sense? How do I know I did that, and—do anything…?” His face, usually still as cold custard, grows wild-eyed, flushed, and desperate. “I would be the kind of person who could actually do a thing like that—to his own mother!”
“Patrick, you were a little kid. You didn’t know it would hurt her.”
“But what if I did? And if I remember, won’t I have to remember that, too? People talk about denial like it’s a bad thing. But maybe defense mechanisms are good. Maybe they defend you from things you couldn’t live with.”
“Patrick, I want you to make love to me.”
He’s shuddering, crying into his hands.
If I’m honest I want Patrick because he is wounded. I need to feel powerful, I need to feel control. If I’m honest there is a lot about me that is ugly. I want to use his body to give my body a triumph against Christian morality, against a secular world that sees me as sexless. And I’m not brave about it. I hide behind my illness, and I hide behind my sarcasm. I hide a lot. So it is justice, I suppose, that he will never be able to give me what I want. Is this even love, what I feel for him? I know I will stay with him to the end. Which is my end. Which is soon.
“I need you.” My voice has faded to a squeak.
But I know what he will say before he opens his mouth.