Here is what I do each morning. As soon as I wake up, barefoot and still in my nightgown, as though I’m 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 in 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 it I take out a chilled golden globe, the size of a small orange. It’s made of firm and springy plastic-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 not be 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 a person like that, someone who does
have to think about her body. It is a luxury, not having to think about your body, but since you have always possessed 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 in that other place, beyond a mysterious divide. They have become different from you, 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 first introduced into my vein. I lay on a narrow examining table at the doctor’s office, waiting while the nurse laid out her instruments. She was pleasant and perky, rather glamorous, with long blond 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 on the inside of my elbow, the sacrificial site. She cleaned it and laid it down, bare, before the row of instruments. She took
a length of tubing, like a long transparent snake. Casually measured this against me-from elbow to shoulder, across top of my chest, and then down to just above my heart. The mouth of the snake will dangle for six weeks.
When the nurse was ready to begin, she paused and 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 watched the square white tiles in the ceiling while she worked, piercing my skin, violating 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 was what would save me. I watched the grid of cross-hatching on the tiles while she slid the snake into the 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, deep in its hidden fastness, now invaded and violated. I said nothing. This would save me.
Taking pills three times a day means nothing. Anyone can do it, people do it all the time. There are no implications. It means only that you are correcting something, an aberration. Having a plastic tube inserted into your bloodstream, dangling over your heart, is different. This is a violation of your deepest recesses. This moves you into a darker place, more dangerous. This means you are ill, and helpless.
After three months, the oral antibiotics stopped working, and I went back to my doctor. We sat in his office, which is pleasantly cluttered in a domestic way. There’s a bright hooked rug on the floor, a tall standing bookshelf, and a big ficus tree with glossy leaves in front of the window. There is no desk; Doctor Kennicott sits in a brown plaid wing chair. When he wants to write a prescription, he sets a polished wooden board across his lap.
Doctor 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 and black leather running shoes. That day he sat in the chair, and I sat in a smaller chair across from him.
“My neck is stiff again,” I said. “I can’t turn my head further than this.” And there was more. As I talked, Dr. Kennicott frowned sympathetically, his mournful eyes attentive. His elbows were set on the arms of the chair, his fingers steepled just under his chin. When I finished, Doctor Kennicott nodded slowly.
“That often happens,” he announced.
This puzzled and disappointed me: then why had we had that treatment? I’d never been to a doctor who had prescribed something which often, he knew, 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 the intravenous treatment, 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, and 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: there is 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 of little use.
There’s reason to think the spirochetes have been m my bloodstream for ten years, for who knows how long. They have set up their malign outposts throughout my body. They’re in the nervous system, the 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 it feels as though I am struggling against an invisible network of tightening bonds. The spirochetes may, too, have infiltrated my deepest and most interior spaces, the tender private whorls inside my cranial basin. This idea, though, is so frightening 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 also frightens me, 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’m now spending 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 antimicrobial soap, a surgical scrub. It has a thin acrid smell, and afterward my skin feels raw and scraped. This is proper, this is part of the ritual: I am preparing myself for the ceremonial chamber. My gestures now are careful and precise. From my big box of medical supplies, from my ziplock plastic bags, I take out three blunt-nosed syringes. The two white-capped ones hold saline solution, which will be injected first and last, to clean the tubing. The yellow-capped syringe holds heparin, a mild anticoagulant. This goes in after the Rocephin, 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 my elbow is a white elastic fishnet sleeve, open-ended, 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-wrapped 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 encounter at this moment will be transported directly to my heart.
Carefully I swab off the flat metal surface of the clave. Holding it aloft, sterile, in one hand, with the other I unscrew a white-capped syringe. I push its threaded nose into the clave,
forcing the surface downward. Inside the clave are matching grooves, and the threaded syringe screws neatly, perfectly, into, the protected tunnel within the clave. On the line of tubing is a triangular cock, and I slide the line from the narrow vise end, where it has been clamped shut, to the wide end. The line to 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 transparent presence creep down the coil until the tube vanishes within the
surface of my skin, and the liquid enters my body. I can feel its’ cold arrival in my vein, Slowly I depress the plunger 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 angel-winged cap on the Rocephin line and set its transparent nose into the opening of the clave. Like the syringe, it fits neatly into its tunneled grooves. This connection feels smooth and satisfying, and I am gratified by this, as though technical perfection means the treatment will work like this, 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, and 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, deep in the interior. Calm water on pale sand. The movement is visible, a low relentless surge. Along the irregular shore a long ripple breaks in a narrow line of foam. There is 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 tinily, 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 is the result of the
spirochetes dying off. I believe this is true. The infusions are the 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 though I’m 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 felt suddenly the delicate tangling grope of the snake inside my chest, a faint dry grappling sensation, just above my heart. When it happened my heart began to pound, panicky, shrinking from this dangerous alien presence. There was nowhere for me to go for help. It was I who gave permission for this. My brain believes it’s good; it’s my body that fears it. I tried to calm my
heart: I refuse panic. Above me, the tops of the trees moved slowly, swaying against the gray sky.
This morning, 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 laid out on the kitchen counter, but he keeps his eyes away from it, 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 accusatory, as though I’ve contaminated the kitchen.
“Thanks,” I say, conciliatory.
He ducks 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 the sight of them fills me with dread. They look diabolical, like something from a horror movie.
When I’m ready, I tell myself that Mark was just uncomfortable, not horrified. Or 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?” I ask hopefully. 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 in 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 should he not? 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 my back. “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 beside the clock.
“That’s it for me,” he said. He took off his glasses and rubbed fiercely at the bridge of his nose. He put his glasses on top of his book and turned off his light. When he turned 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 into his chest, surrounded by his comfort, his healthy body. 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’s away at a conference, but a visiting nurse, Ginger, is coming. It’s her second visit, she came once before, early on, to change the bandages. Now she’s going to change the tubes. I’m uneasy about this, as I don’t know what it means. Will she pull out the whole long snake that has burrowed its way so deep into my interior? Drag it from its
nest above my heart? It’s frightening to have it in there, but it would be frightening, too, 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 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, connecting the tiny spiral chambers, screwing them into the closed valves, unlocking the entrance to my veins, plugging myself into the heavy golden globe, I feel the elixir rush silently into my bloodstream and I feel charged with victory. I feel the spirochetes failing against this magnificent onslaught: they are 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, boisterously good-natured. The dogs sniff her, wagging their tails politely. “Good dog,” she says crooningly, leaning unctuously over them and patting their heads too hard, “good dog.” Ginger is in her early thirties, thickset, with bushy brown in a wild shoulder-length aura. She’s wearing a knitted wool dress, a heavy sweater, and dark clunky shoes. She’s somehow 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 chattily. “It was so fun.”
“Great,” I say. “Did you get anything?”
“A rocker,” she says emphatically, pausing to look up at me, 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, 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. She spreads it open on the kitchen table-it is full of small intricate objects. I sit down. Outside it is turning dark, and we lean together under the hanging lamp. I lay my arm out on the table and roll up my sleeve. Ginger now takes off her big sweater and tosses back her heavy mass of hair. There is a lot of her at that table, breathy, fleshy, bulky. I wish her hair were in a bun. I wish she were lean and smooth, clipped and sterile, in a white uniform.
“So, how have you been?” she asks bumptiously.
“Fine,” I say with pride. “Some aches and pains in my joints, but that doesn’t bother me.”
Ginger shakes her head fondly. “My patients who have this love feeling achy,” she says, as though this were 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, anxious about the hidden snake, fearful of what she is about to do. Ginger yanks off the bandage over the plastic shunt 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 tube,” she says indulgently. “We’re taught as rookies always 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 perilous 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 before 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 task, 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 again. Her heavy hair falls over her shoulder, hanging in a bristly thicket over the instruments. I can smell it. “In fact I have
patient who lives right near you. He’s been on intravenous treatment for two years.”
“Two years?” I say. I’ve been told my treatment 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 say nothing. I wish she weren’t bending so closely over my arm, which lies bare and vulnerable beneath her fleshy face. The transparent tube doubles down beneath my skin and disappears. The whole region of my arm twitches with alarm, with the extremity of its exposure. If she were to do anything now, just jostle the tube accidentally, the possibilities of pain are horrifying. The possibilities are ones I cannot permit myself to think of: infection, the lethal transmission of things directly to my heart, my poor vulnerable heart, with the snake dangling its toxic head directly over its chambers. I feel as though everything now is dangerous, that our passage together through this process has become perilous. Each step is crucial.
Ginger shakes her head again. “No, this is really a terrible disease,” she says.
I cannot bear to hear what she is saying, it is dangerous for me to hear this. I say rudely, “Don’t you have any better stories?” My arm, in her hands, feels exposed 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 body, spiraling deeper and deeper into my defenseless system, 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 and victory, are downward, 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, want to take everything she has touched and throw it from me 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 upset. “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 again over the tubing. She is touching the long snake, as it turns out. She’s replacing only the outer section of it, the bit 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 a curse on me. I imagine tearing everything out of my arm, flinging the transparent coils away from me onto the floor.
She works for a few seconds in silence, 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 again.
I am now swollen, huge with wrath and despair and grief. I am outraged that she should choose to use her power over me in this way, that she should have come to me disguised as a healer and have revealed herself instead as a black curse, 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, finishing up, throwing things away. Her head is down, her face averted, she is clearly upset. 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.