Dr. Emily greets me and leads me to a large exam room, where two other doctors are waiting for us. She points me to a chair and makes the introductions, and then I wait, unsure of how to perform for my audience. I reflexively want to be my trying-not-to-be-in-pain self, so as to impress the doctors with my competence, my seriousness, my reliability, the way I try to with my teachers at school. But I know this may work against me.
Also, I am afraid. After holding back the pain for so long, working so hard to appear as though it doesn’t affect me, if I actually relax my guard, start to let it in—I’m afraid I won’t be strong enough to fight it again when I need to, when I leave this room and go back to my world.
“Can you just walk us through the timeline?” asks one of the doctors, a youngish guy with glasses and a receding hairline.
“The timeline,” I repeat.
“Yes, when this all first started, everything you can remember.”
June 28, 1990, 3:27 P.M. That’s when the pain started. I know, because I wrote it down. But I can’t tell them that. It’s too absurdly precise. Suspiciously precise.
“Well, the pain first started around late June of this year,” I say.
They all make note of that and return their gazes to me, expectantly.
“I had been practicing piano for about an hour—”
“She’s a classical pianist,” Dr. Emily interjects. Some murmurs of approval, more sounds of pens on paper. Dr. Emily nods at me to continue.
“Normally I practice for three or four hours before my hands get tired, or before I take a break. But I’d only been practicing for an hour, and I noticed my hands feeling really achy. So I massaged them for a few minutes and went back to practicing.”
It was impossible to explain to them the slow creep of that first sensation of pain, the feeling of something being wrong but not knowing how wrong it would be, the retroactive sense of foreboding that accompanies the memory, knowing now that that unassuming moment—a random ache, a pause—was the start of something endless. I’ve retraced my steps hundreds of times, thinking back to how I could have possibly willed it on myself, that dawning moment of pain.
“But soon I noticed the aching feeling spreading up my arms and all the way to my elbows.”
“So, both hands? Both arms?” This question from the older doctor. “The pain was symmetrical?”
“Not exactly,” I say. “I mean, yes, both arms were affected. But it wasn’t like they were mirror images of each other. They both hurt, but . . . maybe not necessarily in exactly the same specific spots. I don’t know. It was kind of just all over. It’s hard to remember.”
I don’t want to remember. But I keep remembering, hunting through the memories for clues, even when I don’t want to, even when doctors aren’t asking me to. It’s difficult to think back further than that day in June, so that’s where I start, each time, with the pain blooming from my hands. I limit my scope. It becomes a refrain in my head, a place I visit, a sequence of events I can understand because I’ve retold it to myself so many times.
“So the pain was in your arms,” Dr. Emily prompted.
“Yes, up to my elbows. So I stopped practicing and lay in bed writing a letter, hoping the pain would stop. But instead it began spreading even more: up my arms, over my shoulders, and down my back, even to my legs and feet.”
I don’t tell them how I read his letter over and over, this kind-of-but-maybe-not boyfriend’s letter, his words seeming like boyfriend words—“I’m sorry, I love you, I swear I do, I’ll be different, I’ll be better, I swear”—crying while the pain stole over me, how the pain seemed to spread like ink from the pen in my hand to the rest of my body as I wrote my response to him.
“I tried to sleep, but I felt the pain moving all over my body, until my whole body was encased in pain. My face, the top of my head, my neck. All the way to my feet. It felt like shin splints, but all over. Like I could feel my bones, but it wasn’t only in my bones. Just this kind of bone-deep pain.”
The doctors nod. “And then?”
“Somehow I managed to fall asleep, and when I woke up, it was a day and a half later.”
“So you slept for more than 24 hours,” the older doctor says.
“Yes.”
“And were you still in pain when you woke up?” the younger doctor asks.
I remember the confusion as the pain dawned on me again, after all that blissful pain-free time asleep, the way my father looked at me quizzically when I emerged from my room, the way I held out my hands wordlessly and began to cry, unable to explain what was happening.
“When I first woke up, for a few minutes I didn’t feel any pain at all, and I thought I must have dreamed everything. But within five minutes of waking up, the pain was back. And it’s been here ever since.”
The doctors exchange some glances, scribble some more notes.
“Okay,” Dr. Emily says, nodding and smiling at me.
“So, can you remember, was there anything unusual that happened, health-wise, preceding this pain?” the younger doctor asks.
“What do you mean?”
“Like, had you been sick recently, before you noticed the pain starting? Had you been under a lot of stress?”
A nervous feeling settles in my stomach, and I recross my legs. I will not tell them, they cannot blame this on stress, on my being young, on my being female, on my being stupid.
“Well, I mean, before I left school I had a pretty bad flu or something.”
It was the day of my sophomore recital, I was so feverish I couldn’t function. A friend brought me Tylenol Cold, cough drops, nylons, helped me get dressed.
“And did you see a doctor for that?”
I shrug. “I mean, no. I had a fever, sore throat, swollen glands. It just seemed like a usual thing. Except it took forever to go away.”
“What do you mean by that?” asks Dr. Emily. This may be the first time I’ve revealed this detail to her, the weird flu that never ended.
“Just that, I mean, even after my throat wasn’t sore anymore, I still kind of felt like my glands were swollen all the time, and I kind of just always had a low-grade fever.”
Frowning, scribbling.
“And when did that start?”
May 14, 1990. Four days before I turned nineteen. A week before the end of school.
“I don’t remember,” I say. “Sometime around the end of the semester. Right before I went home.”
I will not tell them, I cannot tell them, about my not-boyfriend, about the games, about his cruelty, about the fight. About that night before I left for the summer. I trust Dr. Emily, but I can’t shake the suspicion that these doctors are here to doubt me, probe me, to dissect me, to take me apart until I am too small to feel anything else but pain anymore. To blame me. But I won’t confess. I will not be blamed. I will not reveal my secrets.
The doctors confer among themselves for a moment, and then Dr. Emily says, “Excuse us for a moment, please,” and they leave the room.
I bring my knees up to my chest and hug them to me. It feels good to move. My shins ache, my arms ache, and when I rest my head on my knees I have to fight the urge to sleep. But I close my eyes for a moment, feel my chest rise and fall with my breath.
Dr. Emily pokes her head in the door and comes back into the room, and I unwind myself back into a normal sitting position. “So, we’re going to get that blood draw today,” she says. Hands in her pockets. White coat floating around her, looking too large for her.
“Do you really think I’m sick?” I ask.
A look of surprise flits across her face, but then she is back to her Dr. Emily countenance, centered and friendly and professional.
“We’re all taking this seriously. Of course. You’re in good hands, don’t worry.”
I’m grateful for her reassurance. But mostly I’m glad.
I passed.
It is winter 1990 and no one knows what’s wrong with me.
Dr. Emily leans in to listen to my
heart and her white coat falls open a little. Her dress is flowery, but still professional—she still seems like a doctor—and yet seeing it is startling. Proof of her humanity, her existence outside the exam room, outside the confines of her role as my doctor. She adjusts the stethoscope and moves a little closer to me, leaning even more, and I feel her belly brush my knee.
“Sorry,” she says, laughing a little, gesturing to her stomach. “I keep forgetting about this thing.”
I am confused for a moment, and then she stands back, her hands cradling her stomach in a suddenly familiar way, and I realize: She is pregnant. My shame is twofold: How have I not noticed this until now? And: How soon will she be leaving me, fleeing with relief from my case to care for her own, far-more-straightforward patient?
I stammer my way through the things I know people are supposed to say upon learning of someone’s pregnancy, the congratulations, the due date question, but my heart is racing, the blood rushing in my ears. In a few months, she will be gone, and then who will see me? Who will see the proof of my humanity?
Who will believe me?
She is talking, I realize, and so I do my best to stay present, pay attention somehow, even though it feels like she has opened up a chasm beneath the exam table and I am falling through the floor.
“. . . maternity leave, but as I said, that won’t start until mid-January. And don’t worry, I’ve been meeting with the whole team to make sure everyone’s on the same page. I actually presented you at grand rounds last week. You’re quite the conundrum. I also had a nice talk with the rheumatologist. He had a few thoughts about what might be going on with you, even though the blood work didn’t pan out. You’re still taking the medication he prescribed?”
“Yes,” I say, “though mostly all I can feel are side effects. It hasn’t helped with the pain or anything.” Drowsiness, as he predicted. And an added layer of fog during the daytime. A kind of numbness. But not enough.
“Hmm,” she says. “And by this point it really should be working, if it was going to work for you at all.”
I see a flash of his kindly face, a lurch of my stomach as I remember his words. My dear. It simply means we haven’t found the right medicine yet.
She sighs as she closes my file and sits back on the round rolling exam-room chair. “I’ll be honest. This is a mystery. I don’t want to say we’re hitting a dead end, but. We’re getting close.”
I’m the dead end. I am dead. No: This is my life, this pain, this fog, this endless aching, this endless exhaustion. It would be better if I were dead. Dr. Emily wouldn’t be here looking so sad, cradling her baby belly, shaking her head over me, wasting her time. I’m sure she’d much rather be home, decorating a nursery, folding tiny clothes into drawers, focusing on the life she will be birthing, not this dead end, not me.
“So that’s it? There’s no answer? We’re just done?” I try but it’s impossible not to cry, not to have my stupid ineffectual tears leaking down to my nose, my lips.
She rolls closer to the exam table and puts a hand on my knee. “Of course not. We’re going to keep looking. We’re going get to the bottom of this. Or do our best to try to, anyway.”
I bet she will be a good mother. I can see her, in her Dr. Emily clothes, her white coat and stethoscope, holding a tiny baby, soothing it with quiet sounds and gentle rocking. Putting a Band-Aid on a skinned knee. Reading a bedtime story while idly caressing a toddler’s hair as they lie in bed together. But just imagining this opens up a yawing need, a clawing at a tender place, that makes me feel like I might cry forever, so I squeeze the flesh of my right hand between my thumb and finger with my left hand and try to push it down, all of it, everything.
“So. Moving forward,” she says. “When you come next week, I’ll introduce you to the doctor who will be taking over for me while I’m on maternity leave. And I’d also like you to start seeing Dr. Cohen.”
“Who’s that? Another specialist?”
She hesitates, and then says, gently. “He’s a psychiatrist.”
I look up at the ceiling. Maybe gravity will keep the tears inside my eyes. “So you’re giving up on me.”
“No, I am most definitely not,” she says, standing. I feel her hands on my shoulders, her belly grazing my knees. “I promise you I’m not. Dr. Cohen is merely one part of the team, one part of the overall treatment plan we’re putting together here.”
I wipe my eyes, head down now, forcing her hands off my shoulders.
“Look, there’s no reason why you shouldn’t get some support while you’re going through all this,” she says. “It’s got to be stressful for you, feeling so sick, being so worried about what might be wrong with you while also dealing with the symptoms you have. Doesn’t it make sense to talk to someone about it? And possibly be treated with medication that might help you cope? That’s all Dr. Cohen is here, another piece of the puzzle, to support you while we figure out what’s wrong.”
“It sounds like,” I say, and now I don’t even bother trying to keep it together, appear sane, be the good patient. I am crying the kind of embarrassing, heaving sobs that make it impossible to talk. There is snot running down my face, my eyes hurt from crying. But I don’t care. Everything hurts, everything is pain, I don’t have the energy to pretend like I’m okay anymore. “It sounds like you just think I’m crazy. Like that’s why I’m sick. I’m just crazy. That’s what you want me to admit, right? That I’m crazy? And then I can just go away and stop bothering everybody. Is that it?”
I wipe my nose with my sleeve and look up to see Dr. Emily’s eyes bright with her own tears. But she blinks quickly, pulls it together.
“No,” she says, her voice quiet but steady. “That’s not it.”
For a moment the only sounds in the room are my sniffing, my breath catching on dying sobs as I try to calm myself down.
“I don’t think you’re crazy. I think you’re in pain. And I don’t know why. And, while we try to figure it out, I want you to have someone to talk to about the pain you’re in. Maybe that’s all you’ll do with Dr. Cohen is talk. Or maybe he’ll prescribe you something that might help you cope with your pain level. That’s for the two of you to figure out together.”
I nod my head. It feels like we’re done here. Like everything is done.
“Oh!” She exclaims. I glance up and see her looking at me apologetically, a hand on her belly. “I’m sorry—the baby just kicked. It surprised me. I don’t know that I’ll ever get used to it.”
“The kicking?”
“The idea that there’s actually a person in there.” She turns back to the rolling chair, picks up my file. “So amazing, the secret things bodies can do.”
“Yes,” I say. But I’m not thinking about the baby blindly moving and turning inside her. I’m thinking about my pain, the deep, black ache of it, how I picture it like tentacles, inexorably squeezing my body, wrapping itself around my bones, choking me, relentlessly growing inside me, with a consciousness all its own, a biological imperative to exist that is directly at odds with my own existence. How I am its host, how somehow I have nurtured this, willed it into being, allowed it to flourish inside me, given it life.
It’s late winter 1990 and no one knows what’s wrong with me.
The room is dark and chilly, and I’m dismayed when the tech tosses me a hospital gown and yanks the privacy curtain around me so that I can change. I’m already so freezing.
I gown up, leaving my socks on, and push back the curtain.
“Just a few more minutes,” he says, squinting at his computer monitor, adjusting a piece of machinery.
I wrap the hospital gown tighter around me.
“You okay?” he asks. He’s frowning at me as though I’ve done something wrong.
“Just cold,” I say.
“No, I mean, what are you in for?”
I don’t understand, and he looks exasperated before turning back to the monitor.
“Why are you having this done, what are you sick with,” he
says, as if that makes it easier for me.
“I—” I begin. “I don’t know. That’s why we’re doing it.”
“You don’t know?” Now he seems outright disgusted. He mutters something under his breath and says, “This is a very expensive test, you know? It’s not just a thing you do to rule stuff out.”
I can feel my throat constricting, my eyes burning with the beginnings of tears. I focus on the ground, on my feet in their whitish-pinkish socks, survivors of some long-ago laundry incident, on the coldness of the cement floor beneath them.
“I’m here because my doctor ordered it. That’s all I know.”
He mutters something under his breath again, but louder this time, loud enough for me to almost hear it. Fucking waste of my time.
“Excuse me?” I look up at him, staring at him directly, daring him to repeat himself.
“It’s just, you look fine to me,” he says. “The people that usually get sent down here?” He shakes his head. “It’s no joke.”
“Yeah, well,” I say. “I’m not laughing.”
Finally he guides me to the platform, another cold place, where I am to waste his time by lying on a wide table, which turns out to be even harder and colder than I anticipated, even with the thin blanket he provided as cushion. My teeth are chattering and my tears are running down the side of my face as I look up. Above me is a light so bright it obscures everything. The tech is now a dark shape who busily moves things above me, beside me. I hear the whir and clank of machines, but everything is that bright light, and the sound of my own teeth hitting together.
“It’s very important that you don’t move.” His head butts in front of the light as he leans over the table, and now he is a dark-green human-shaped thing looming above me, a corona of spotlight shimmering around him. “No teeth chattering. No more crying.”
“Okay,” I say, but it makes my teeth chatter more, my nose run.
I close my eyes as the machine above me comes to life, a camera scanning me for abnormalities, hunting for information. A fucking waste of time.
The Beginning of Everything Page 7
