Here is what I do each morning. As soon as I wake up, barefoot and still in my nightgown, as though I were on the way to my lover, I go downstairs to the darkened kitchen. I'm alone in the house: my husband leaves early, my daughter is away at college. I don't bother to turn on the lights. I go straight to the refrigerator and open the door to its icy glare. From the refrigerator I take a chilled golden globe, the size of a small orange. It's made of firm and springy plastic, and it's solid, with some heft. The pearly outer sheathing is translucent, obscuring the glowing interior and giving it a muffled shimmer. I set the globe, with its neat coil of attached tubing, on the kitchen counter. For the next three hours it will lie there, slowly warming, so that when the fluid inside enters my vein, it will be not cold and torpid but swift and potent. What's inside the radiant globe is Rocephin, a powerful antibiotic, which will cure me.
When you are not ill, when you are well, you think about yourself in a particular way. You take being well for granted: that is who you are. You are someone who does not have to think about her body. Not having to think about your body is a luxury, but since you have always had it, you aren't aware that it's a luxury. When you think about sick people, you think of them as different from you, set apart in some unspecified way: they are Other. They are beyond a mysterious divide. They are branded somehow, in a way you don't consider much. Even if you do consider it, you can't get very far. Why are other people sick? Why are you not? There are no reasons; there is no logic. Things are the way they are. In some interior, subliminal place you believe that you deserve your health. The person you are, it seems, deserves to be healthy, just as the person you are seems to deserve two legs, a nose. I had two legs, a nose, my health.
Ten days ago the line was introduced into my vein. I lay on a narrow examining table at the doctor's office, waiting while the nurse assembled her instruments. She was pleasant and perky, rather glamorous, with long blonde hair and gleaming red fingernails. I lay perfectly still. I was prepared for everything, anything; nothing she did would distress me. This was the initiation ceremony, the start of the healing. It was frightening, but I welcomed it, whatever terror it held. I was embracing the source of my fear. The treatment would be my salvation.
The nurse pulled up my sleeve and exposed the white skin on the inside of my left elbow, the sacrificial site. She cleaned it and laid it down, bare, beside the row of instruments. She took up a length of tubing, like a long, transparent snake. Casually she measured this against me—from elbow to shoulder, across under my collarbone, and then down to just above my heart. Here the mouth of the snake would dangle for six weeks.
When the nurse was ready to begin, she paused and looked up at my face. "You're going to feel a pinch," she warned.
I nodded. I knew that "pinch" was code for pain. The nurse looked back down, and I turned my head away. I stared at the square white tiles in the ceiling while she worked, piercing my skin, invading my body. I could feel her movements. I didn't look.
"I hate when it spurts," I heard her say crossly. "Now it's all over the rug."
I said nothing. I didn't turn to look. No part of the treatment would trouble me; this is what would save me. I stared at the cross-hatching on the tiles while she slid the snake into my vein and sent it up the length of my upper arm, through the widening veins across the top of my chest, and down to the great thunderous vessel directly above my poor heart. I said nothing. This would save me.
Taking pills three times a day is meaningless. Anyone can do it; people do it all the time. The act has no implications. You are simply correcting something, an aberration. Having a plastic tube inserted into your bloodstream, dangling over your heart, is different. It is a violation of your deepest recesses. It moves you into a darker, more dangerous place. It means you are ill, and helpless.
After three months the oral antibiotics had stopped working, and I went back to my doctor. We sat in his office, which is pleasantly cluttered in a domestic way. It has a bright hooked rug on the floor, a tall standing bookshelf, and a big ficus tree with glossy leaves in front of the window. Dr. Kennicott has no desk; he sits in a brown-plaid wing chair. When he wants to write a prescription, he sets a polished wooden board across his lap.
Dr. Kennicott is a quiet man with a kindly manner, slightly bohemian. He has mournful brown eyes and shaggy graying hair and sideburns. He wears a white lab coat, khaki pants, and black-leather running shoes. He sat in the wing chair, and I sat in a smaller chair across from him.
"My neck is stiff again," I said. "I can't turn my head any further than this." I had more to report: the symptoms were back. As I talked, Dr. Kennicott frowned sympathetically, his sad eyes attentive. His elbows were set on the arms of the chair, his fingers steepled just under his chin. When I finished, he nodded slowly. "That often happens," he announced.
This puzzled and disappointed me: then why had we used that treatment? I'd never before been to a doctor who prescribed something that he knew often didn't work. I'd never been to a doctor who didn't just fix what was wrong.
"Then what do we do now?" I asked.
Dr. Kennicott pushed out his lips thoughtfully. "I'd suggest moving on to intravenous antibiotics."
"No," I said at once.
I knew about intravenous—he'd mentioned it before. I didn't want it. It was too serious, too alarming. I told him it wasn't justified: I wasn't that ill. I was basically healthy, I told him. Other people have this disease and are treated for it and recover completely. That happened to my daughter: she was treated for it at once, and now she seems fine. I am basically fine, I told him.
The doctor said nothing while I explained this. He said nothing when I stopped. He sat in the wing chair, his hands steepled under his chin. He watched me quietly, waiting for me to understand. Finally I stopped and looked at him, alarm dawning.
To understand that you are seriously ill is to cross over into a different country. You are apart from other people now. Something separates you from them, something you cannot change. The realization is like a fall from a great height. You are silenced. You have no recourse. You cannot help yourself. Your body has failed you, and you are helpless. You must change your expectations of all things. You must put yourself in the hands of the healers. They may fail.
When I understood this, I fell silent. I was in a new place. Things were not as I had thought; arguing with the doctor was useless.
This disease, like syphilis, is carried by spirochetes. We have reason to think that the spirochetes have been in my bloodstream for a decade, for who knows how long. Now, apparently, these spirochetes have set up their malign outposts all through my body. They're in my nervous system, my muscles, the connective tissue inside my joints, my spinal cord. They have stiffened my neck and my shoulders. They have turned my muscles leaden and my limbs resistant, so that when I move, I feel as if I were struggling against an invisible network of tightening bonds. The spirochetes may even have infiltrated the tender, private whorls inside my cranial basin. This idea is so frightening, though, that I don't allow myself to think about it. I don't permit myself to slide into that well of terror. I can't afford to.
The treatment frightens me too, but I can't afford that fear either. I've given myself up to this, like a postulant giving up her soul to God. I'm allying myself with this larger power. The treatment will be my salvation. I can't afford to believe otherwise.
This morning, when the moment for the infusion arrives, I go back to the kitchen from my study. I'm dressed now, in jeans and a sweater. I work at home, getting my doctorate in early childhood development. I've finished the coursework and am writing my dissertation, which means that I don't have to explain to anyone why I now spend every morning at home, unavailable to the world, engaged in a private and fearsome activity.
At the sink I wash my hands with a liquid anti-microbial soap, a surgical scrub. It has a thin, acrid smell, and afterward my skin feels raw. This is proper; this is part of the ritual. I am preparing myself for the secret chamber. My movements now are precise. From my big box of medical supplies, from my zip-locked plastic bags, I take three blunt-nosed syringes. The two white-capped ones hold saline solution, which will be injected before and after the Rocephin, to clean the tubing. The yellow-capped syringe holds heparin, a mild anti-coagulant. This goes in last, so that the blood idling in the tubing between treatments will not form clots. I lay all these things out beside the globe. The instruments are ready.
I pull up the sweater on my left arm. Clasped along the inside of my elbow is a white elastic fishnet sleeve that holds the apparatus tight against my skin. I slide this off, letting a translucent line of tubing uncoil downward into the air. One end of this is taped flat to my skin in a serpentine loop before it disappears into my flesh. The other end, interrupted by a small, transparent junction box, ends in a blue valve. This is called a Clave, and it is shaped like the head of a lizard, narrowing and blunt-nosed. I open a foil packet holding an antiseptic swab, and its sharp alcohol odor blooms in the air, powerful and sobering. With a little bad luck any germ I carry at this moment will be transported directly to my heart.
Carefully I swab the surface of the Clave. Holding it aloft, sterile, with one hand, I unscrew a white-capped syringe with the other. I screw the threaded nose of the syringe into the Clave. On the line of tubing is a triangular cock, and I slide the tubing free of it. The line into my vein is now open.
I press down on the plunger. The loaded syringe holds two and a half milliliters of saline solution. I watch the solution creep down the coil to where the tube vanishes under the surface of my skin, and the liquid enters my body. I can feel its cold arrival in my vein. I press the plunger slowly down until I reach the flattened air bubble at the bottom of the shaft. I unscrew the syringe and set it down. Still holding the Clave in the air, I unscrew the small cap on the Rocephin line and set its transparent nose into the opening of the Clave. Like the syringe, it screws neatly in. This connection feels smooth and satisfying, and I am gratified by it, as though such technical perfection means that the treatment will work in just this beautifully engineered way.
I sit down and lean back. Now I'm connected. The valves are open, the liquid has begun its journey into my body. The golden globe is pressurized; for the next forty minutes it will slowly contract, forcing the Rocephin steadily into my bloodstream.
I close my eyes. My part in this is like prayer: I concentrate on what is taking place inside me; I visualize it. I see the golden tide beginning its silent warrior's surge, past the heart and through the wide channels of the great arteries, the smaller ones of the arterioles, moving deep into the interior, into the narrow waterways of the capillaries. I see the golden tide moving into a still lagoon. Calm water on pale sand. The movement is visible, a low, relentless surge. Along the irregular shore a ripple breaks in a narrow line of foam. I hear a sighing hiss, a small, seething commotion: the spirochetes, the tiny corkscrews of the disease, are sizzling in a frenzy of death. I hear them thrashing; I see the surface of the water along the shore boil and churn as they jitter. They twist and sputter as it hits them. They are dying, dying in droves, dying by the millions, at the touch of the smooth golden surge.
During my first week of the treatment I had the predicted reactions: high fever; chills and headaches; brief, wild, stabbing pains in all my joints. I'm told that all of this results from the spirochetes' dying off. I believe this is true. The infusions are Asian hordes sweeping across the wide plains, overwhelming our enemy. I lay in bed, sick with fever, feebly triumphant.
Now the fever has stopped, and I'm better but not well. I know I am ill. I feel as if I were walking carefully on some unreliable surface, not knowing what movement might cause a sudden terrifying crack and plunge. Yesterday I took the dogs out for a walk through the woods, down to the winter-dark pond and past it, up the hillside beyond. The woods are brown and mysterious now; the trees creak ponderously in the wind, and their gray filigree tops sway silently. The narrow path was soft underfoot. Walking along it, climbing the steep slope of the hill, I suddenly felt the delicate, tangling grope of the snake inside my chest, a dry, grappling sensation just above my heart. When it happened, my heart began to pound, panicky, shrinking from this alien presence. I had nowhere to go for help. I was the one who gave permission for this. My brain believes it's good; my body fears it. I stood still, on the soft path. I tried to calm my heart. Above me the tops of the trees moved slowly, swaying against the gray sky.
On a Saturday my husband, Mark, comes into the kitchen when I'm getting ready to infuse. He's been out in the village doing errands, and now he stands just inside the door, setting down packages. I know he sees my equipment on the kitchen counter, but he keeps his eyes away from it, as though it were a naked body.
"I couldn't find the coffee you like," he says, unzipping his parka. His voice seems loud and artificial.
"That's all right," I say. "They have it at Sgaglio's. I'll get it tomorrow."
"I got everything else," he says. His eyes now fix on mine, faintly accusing, as though I've contaminated the kitchen.
"Thanks," I say, conciliatory.
He ducks back out into the mudroom, to hang up his coat. When he comes back in, he shuts the heavy kitchen door hard.
"You're welcome," he says. Still without looking at my syringes, his dark gaze fixed on mine until it shifts to the door, he heads for his study. Mark is a philosophy professor, and his mind moves either in great wheeling arcs or in little tiny circles, depending on your point of view. I hear him sit down in his study. Alone in the kitchen, I turn back to my instruments, but now the sight of them fills me with dread. They look diabolical, like something from a horror movie.
When they are ready, I tell myself that Mark was just uncomfortable, not horrified. Or he was abstracted, as he often is. I call in to him in his study, my voice playful. "I'm about to shoot up. Want to watch?" If he'll be part of this, it will be less frightening; it will seem more normal. But he doesn't want to watch.
"No thanks," he calls from his study. His voice is not playful, and after a moment I hear his door close quietly. I know he finds all this repugnant—and why shouldn't he? Why should he have to share it with me?
He's not the only one. My friend Sarah came over one morning, and when she saw my syringes in their bags on the counter, she jumped nervously behind me. "I don't want to look at them," she explained.
I begin to wonder if I should wear a bell, to warn normal people of my approach. I feel frightened and isolated. I can see I am alone here.
Last night, in bed, when Mark was ready to go to sleep, he closed his Kierkegaard and set it on his bedside table next to the clock. "That's it for me," he said. He took off his glasses and rubbed fiercely at the bridge of his nose, which glistened. He folded his glasses, set them on top of his book, and turned off the light. When he rolled over on his side, toward me, I was waiting for him.
"Put your arms around me," I said, and my husband did this at once, gathering me wholly against him. My face pressed close to his chest. Surrounded by his comfort, I said, "Tell me I'm going to get well." I needed to hear the words.
I felt Mark's hand on the back of my head, stroking my hair. "You're going to get well," he said.
"Say it again," I said, pressing my face against his chest.
Tonight I'm alone. Mark is away at a conference, but a visiting nurse, Ginger, is coming. It's her second visit. She came early on to change the bandages around the tube after it was first put in. Now she's going to change the tube. I'm uneasy about this, because I don't know what it means. Will she pull out the whole long snake that has burrowed its way so deep inside me? Drag it out from its secret nest above my heart? I'm frightened to have it in there, but I'm also frightened to have it moved.
Still, I'm looking forward to seeing Ginger. I know I've done well, and I'm proud of myself. I'm looking forward to her praise: I'm a good patient. The pains are mostly gone, and both their arrival and their departure are proof of my prowess. The opening where the line enters my skin is pale and healthy, not inflamed. Each morning I have performed the infusion successfully, sending the golden tide deep into my interior. Each day, screwing the tiny threads into the Clave, unlocking the entrance to my veins, plugging myself into the heavy golden globe, I feel the Rocephin rush silently into my bloodstream and I feel charged with victory. I feel the spirochetes failing against this magnificent onslaught, overwhelmed, undone. I know we'll be victorious, and my nurse knows it too. She is the agent of my healing. Her presence plays a part. It will make this real. She'll infuse me with hope and conviction.
Around eight o'clock Ginger arrives. She opens the back door and bustles cheerfully into the kitchen. "Hi there," she says, boisterous and good-natured. The dogs sniff her, wagging their tails. "Good dog," she says in a croon, leaning unctuously over them and patting their heads too hard, "good dog." Ginger is in her early thirties and thickset, with bushy brown hair in a wild, shoulder-length aura. She's wearing a knitted wool dress, a heavy sweater, and dark, clunky shoes. She's powerful and clumsy, like a shaggy little bull.
Ginger sets down her bag and takes off her padded jacket, already talking. "I just came from an auction in Poughkeepsie," she says. "It was fun."
"Great," I say. "Did you get anything?"
"A rocker," she says emphatically, delighted I've asked. "A porch rocker. It's real old and funky. I really love it."
"Great," I say again.
I don't care what she bought, but I'm so pleased to see her that she could read aloud from the telephone book. I listen happily as she gabs, watching her take out a big plastic packet, sealed and sterile, full of small, intricate objects in their own antiseptic packets. She spreads them on the kitchen table, and I sit down. Outside, the darkness is thickening, and we lean together under the hanging lamp. I lay my arm on the table and roll up my sleeve. Ginger takes off her sweater and tosses back her heavy mass of hair. She is large at that table, breathy, fleshy, bulky. I wish her hair were in a bun. I wish she were lean and smooth, clipped and austere, in a white uniform.
"So, how have you been?" she asks.
"Fine," I say with pride. "Some aches and pains in my joints, but that doesn't bother me."
Ginger nods. "My patients who have this love feeling achy," she says, as though this is an endearingly foolish trait. "They think it means they're getting better."
I smile with her; I know they're right.
Ginger opens her sterile packets, ripping back adhesive strips, putting on thin gloves. I am nervous about this procedure, the hidden snake, fearful of what she is about to do. She yanks off the bandage holding the plastic shunt flat against my arm, to where it enters my skin. As her hands near the opening, I turn rigid. She stops. "Where does it hurt?" she asks.
"It doesn't," I say. "I'm just wary." In fact I am terrified.
"You think I'm going to pull the adhesive back against the tube," she says indulgently. "We're taught as rookies always to pull with the tube. You pull against it"—she makes a sudden ripping gesture, as though she is about to jerk the unprotected tube from where it snakes into my skin—"and you'd pull the shunt right out of your arm. Like, that is not therapeutic."
I say nothing, trying to calm my heartbeat. My whole system is running on alarm. My heart is pounding. That dangerous gesture, the mimicking of violence, has shocked me. She now begins to do delicate things to the tube. I don't want to watch, and to distract myself I look at her face.
"Do you do this a lot?" I ask.
She told me last time how grateful her patients are, and I want to hear stories of her successes. I want to hear how this disease is vanquished, how good she is at her work, how powerful and inexorable this treatment is. I am greedy for these stories. I want to count myself among this healing crowd.
Ginger looks up. "Oh, yes," she says. "I do chemotherapy all day long."
I frown; this isn't a word I want to hear. This is not a group I want to belong to. "No," I say. "I mean do you do this—treatment for my disease—often?"
"Oh, yes," Ginger says again. She bends over the tube. Her heavy hair falls over her shoulder, hanging in a thicket above the instruments. "In fact I have one patient who lives right near you. He's been on intravenous treatment for two years."
"Two years?" I say. I've been told mine will last six weeks.
"Yes," she says, shaking her head. "He's in terrible shape. He's had your disease for years, and it wasn't treated right away. He's nearly paralyzed. He's trying oxygen-chamber treatments now. Nothing really seems to help him."
I don't speak. I wish she weren't bending so close to my arm, which now lies bare and vulnerable beneath her fleshy face. The transparent tube curves down beneath my skin and disappears. The whole region of my arm twitches with alarm, with the extremity of its exposure. If she just jostles the tube accidentally now, the possibilities of pain will be horrifying. I cannot permit myself to think of the possibilities: infection, the lethal transmission of things directly to my heart, my poor vulnerable heart, its chambers directly under the snake's dangling toxic head. I feel that everything is dangerous now, that our passage together through this process has become perilous. Each step is crucial.
Ginger shakes her head again. "This is really a terrible disease," she says.
I cannot bear to hear what she is saying. I say rudely, "Don't you have any better stories?" My arm, in her hands, feels bare and frightened.
She looks up. "About this disease? No. If it isn't treated right away, it's really terrible. You see, it mutates in your system." I stare at her, appalled, willing her to stop telling me these things. She looks earnestly at me, her huge, bristling hair surrounding her face. "What happens is that the spirochetes, if they aren't treated right away, change form, so that the treatment can never catch up with the disease. Each time the doctor tries something new, the form is different. The disease goes deeper and deeper into your system. This man has it in his spinal cord, and it's gone into his brain; he has neurological symptoms. Now he's going to doctors who have it themselves, to see how they're treating their own diseases."
I stare down at my arm, mesmerized with horror. As she talks, against my will I am picturing the spirochetes in my own system, spiraling deeper and deeper, burrowing their way into my spinal fluid, sliding unstoppably into the crevices of my brain. Each word she speaks makes this real, inevitable, incontrovertible.
All my feelings of triumph, of power, of victory, are ebbing, cascading toward ruin. She is destroying everything I have accomplished. I hate the words she is saying. I hate what she is doing to me. I want to rip the tubing out of my arm. I want to tear out everything she has touched and throw it aside and order her from my house. She is casting a spell. She is cursing my body. She is destroying the health and vigor of my flesh. She is shattering my hope. She is declaring the futility of everything I am struggling to achieve. She is showing me a future of misery and despair. She is deriding my belief in the golden tide. I hate her more than I could have imagined possible.
Looking down at my arm, I say in a strained voice, "I don't think you should talk this way to your patients."
Alarmed, she looks up. "What does your doctor tell you?"
"He doesn't talk to me like this," I say, my voice choking. "And you should never talk like this to a patient."
"I'm sorry," Ginger says. She is clearly unsettled. "I'm a very sensitive person. I wouldn't have upset you if I had known."
"I've had this disease for ten years, and it hasn't been treated," I say. I am struggling. I am desperate to keep from crying. "I don't want to hear about this."
Shaken, Ginger bends over the tubing again. She is not changing the long snake, I discover. She is replacing only the outer section of it, the part that goes from the Clave to the junction, but I now hate having her touch me. She is contaminating me; her touch is dangerous, poison to my body. Her touch is lethal to me. I imagine ripping everything out of my arm, flinging the transparent coils away from me onto the floor.
She works for a few seconds in silence, and then starts up again. "Last time I came," she says carefully, "we talked about your daughter, remember? Who has this too, right? And was treated for it?"
How can she not have understood me? Does she imagine I want to hear this about my daughter? "I said I don't want to talk about this," I say.
I am now swollen, huge with wrath and despair and grief. I am outraged that she would choose to use her power over me in this way, that she would come to me disguised as a healer, and reveal herself instead as a black demon, an agent of doom and anguish. I want her to get out of my kitchen, out of my house, off my property. I want to sic the dogs on her. I sit in raging silence while she finishes. She pads heavily back and forth, cleaning up, throwing things away. Her head is down, her face averted. I think she's crying. I don't care.
I want only to control my tears, to keep from breaking down in her presence, to achieve merely that. And in that one small thing I am victorious.
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