A Day, A Night, A Week, A Month (A Lupus Diagnosis Story)

A Day, A Night, A Week, A Month

By Elise Huther

 

It is very blue here; blue paintings on blue walls, blue cushions on the chairs, cheap, blue-flecked carpet. Even the young man next to me is wearing a blue t-shirt. He is fat and his hair is oily. He looks at me too long; I want to change seats. I chew my lip distractedly, pausing when the metallic taste of blood washes over my tongue. For maybe ten minutes I try to make myself stop, but before I realize it I am biting again, about to make the other side bleed, too.

I don’t want to be in the doctor’s office again, to explain and answer questions; to ask them as well, when I am so tired. It is a tedious process to begin with, and I don’t have the patience for it now. I am preoccupied; I’m supposed to find out today. I tap my foot; remember to breathe you have to breathe just breathe. I do. I breathe. I don’t want an answer, and yet I don’t want to walk away without one.

“Elsie?” The nurse mispronounces my name, like they all do. I barely notice; I just stand and follow her. Following nurses is second nature to me now. Anyone wearing scrubs could questioningly call out any name beginning with “El”, and I would probably follow them into a windowless van before I realized what was happening.

The doctor meets my mother and me in his office. It’s so white in here, I observe. I miss the pediatrics offices. My headache sprouts fifteen minutes into the appointment. I need to pee. The faux-leather chair is sticky, and I want to go home.

Dr. Jones settles into his rolling chair. I keep breathing, on the edge of the conversation I have been waiting for. Hand shakes, hi-how-are-you’s, How-are-your-symptoms-They’re-the-same-Well-we-need-to-talk-about-that. It all ran together in my mind, only certain phrases catching in the wrinkles of my brain. Chronic autoimmune disease, potential risk of organ damage, So-she’ll-always-be-sick-Yes-she’ll-always-be-sick-but-we-caught-it-earlysowithmedicationandlifestylechangesweshouldbeabletocontrolthe…lupus.

A heavy curtain is falling over my mind; it is thick and cold and all I can hear is a voice, the processed, perfectly-shaped tone of a spokesman from a commercial I heard as a child: “Lupus ruined my daughter’s life. Get information. Get in the loop. Visit the Lupus Foundation of America website and get the facts.” I see the TV screen, too; the young woman is frozen in time, scrambling for apples she has dropped. I drop things, too.

“Lupus ruined my daughter’s life.”

Yesterday I dropped my hairbrush. I couldn’t finish; my hair is still knotted in the back. This morning I fell down, walking from my bedroom to the bathroom. Last week I passed out, briefly, stepping out of the shower. These things have happened; they have been happening. They will continue? Chronic auto-immune disease. Apparently. “Lupus ruined my daughter’s life.” Yes. The curtain is heavy over my mind; it is cold and thick and white.

Dialogue continued. Information, questions, answers, brochures, prescriptions. Arthritis, fatigue, cognitive degeneration, sunlight sensitivity, thinning hair, poor circulation, chronic pain, etcetera, etcetera, whatever. I know.

I tune in and out of the conversation happening mostly between my mother and Dr. Jones, interjecting mechanically when it seems like I should. Soon I lose myself in the white of the walls, white of sterile gauze and cotton balls, the doctor’s white lab coat, the floor and the ceiling and the cupboards all white white white; so white I can almost hear it.

“Have you read that book?” Dr. Jones’ question makes its way through the static. Mom puts the brochures in her purse; her keys jingle. We’re nearly done here.

“Oh, um, what was the title again?” I mumble. When was the last time I used my tongue? Last week? Last month? Only minutes ago, though it doesn’t feel like it. He repeats the title.

“You’re interested in criminal psychology?” He asks. Apparently this had been discussed while I was lost in the white. I nod. “You might like that book, then. It’s all the rage now.”

“Oh, I haven’t heard of it.” I say. “I’ll look it up.”

“It’s Swedish.”

“Ah.”

Silence.

“But I don’t remember the author’s name.” Dr. Jones considers this with a deep frown.

“Oh. Well. I bet I can find it if I Google the title.” I assure him, because he seems genuinely concerned that this lack of information may devastate me.

“I’ll write it down.” My mother says, and does so.

More silence.

“Yes, you should look it up.” The doctor nods, as if deciding for sure that this would be a good and proper course of action.

“I will.” I lie.

Silence again, brief but long enough to make me feel awkward.

“I’m sorry.” Dr. Jones says. “If you like, we have resources for counseling and chronic illness support groups in the area.”

“Um. No thanks; maybe later.” My reply is tentative as I glance back and forth between my mother and the doctor.

“Well, alright.” He reaches for his clipboard. “Now that we know what we’re dealing with, there are a few prescription treatment options…”

I leave the office with two refill scripts, two new prescriptions, some samples, and a follow-up appointment. And The Diagnosis. An answer, but no cure.

“How do you feel?” Mom asks quietly. Her hand is poised to start the van but she waits intently for me to speak.

“Well, we knew it was a possibility.” I know that isn’t an answer to her question, but I’m not sure I have one anyway. I’m officially diagnosed; so what? I have a specific target for blame, but it is not as satisfying as I’d hoped it would be. I feel blank; a heavy, sort of gray indifference that leaves my mind clear. Not ‘clear’ as in ‘clean’, or as if it has been de-cluttered. More like a wide space from which everything has been emptied out, leaving me only with a vague sense of awareness that anything was ever there at all; like the faint cutouts left behind by boxes moved from a dusty floor.

I am not dying, I think to myself. I’m just sixteen and past my prime. That’s all. I think of wheelchairs and poverty and loved ones dying. There are worse things. I’m fine.

~*~

Tonight there is crying. Maybe the TV; maybe not. I can hear it echoing, some faceless mourning thrumming in the air. Maybe Mom on the phone with Aunt Janice, telling her about the Diagnosis. Maybe not. I know she wishes I would come downstairs.

When I went to sleep last night, my room was my own cozy nook in the hall. But not now, as I perch on the corner of my bed in the darkness. Now the room is part of a heavy beast, heaving great breaths through windowpane teeth. I can hear the whole house—the beast—creaking. I don’t like this sound, it’s old bones readjusting. I am in its belly and I can feel it roiling, threatening to expel me; to vomit me up, exposed into the city to be assaulted by great chunks of sight and sound and light and smells and the shadows with the lurking things. I wish it would. Those things I could run from.

I see the night outside my open window. The sky wears the Milky Way like a flimsy blouse, insufficient to completely obscure its velvet-blue breast. Stars peek out from between the gauzy folds and I don’t care. It’s not like it’s going anywhere; it’s not like it will change. I’ve marveled before; do I have to do that every time I look up? Still I feel obligated, and try to muster up some wonder. Not tonight. I try not to feel guilty.

~*~

It has been a week since The Diagnosis. I feel so dirty; so cluttered and like my insides are crusted with some sort of grime. I have been thinking this, knowing for the last seven days it is only my imagination, but I am so tired and stiff that I can’t help feeling like a rusty machine. Maybe if I drank bleach. I think. Maybe if I turned inside-out and scrubbed my veins out with soap, drained and then replaced the blood inside; put my liver in the wash on “delicates”. Surely after all sanitation measures, the disease would be eradicated. But they tell me that bleach would do more harm than good, and that bloodletting is a primitive and medically flawed procedure. So I continue to swallow the pills they give me, knowing that they will never wash it all away. It’s the weirdest thing, I observe, to feel claustrophobic because of something inside of you instead of because you are inside something. There must be something I can do. There is always something to be done. Doing fixes things, right? Three action-steps, or five, or twelve?

A hot shower has to suffice for now; has to leave me clean enough to function another day. Not just warm water; not just steaming. Hot, to a degree just before the point of unbearable.

I stand directly beneath the showerhead, fifty thin jets of water stabbing into my scalp. I can almost feel blood rushing in to flush my cheeks as I scrunch my eyelids shut tight. Focus. The lava spreads through my hair, fills up every tangle until it spills down my forehead and my neck and over my ears, burning burning burning and I can feel every place it touches as it rushes down my length from head to toe.

Streams run continually down through my bangs. They grow heavy, feathered smooth against my face from the water pulling them down. I cringe as I wait for my sensitive skin to grow numb to the heat engraving rivers around my eyes, dripping from the tip of my nose, rolling over my cheek bones and between my swollen, parted lips.

I imagine the water burning every germ from the surface of my skin as it flows down, then the steam penetrating through pores to flush out the impurities inside. Purging I imagine being all clean.

Snatches of Mother Goose songs are stuck in my head. I don’t know why they are there, but I don’t fight them; they are a distracting contrast. I play the music forcefully in my mind, filling it up until there is room for nothing but all the king’s horses and all the king’s men, sewing Humpty-Dumpty’s wounds shut again.

Why does everyone assume that Humpty Dumpty is an egg? I wonder for the thousandth time, running through the lyrics in my mind. The rhyme never specifies. I know that even the seemingly innocent assumptions of childhood were never actually simple; I was just too young to question them. A child isn’t capable of theorizing; of tracing the origins of Humpty Dumpty back to the bloody dismemberment of King Richard III, or the destructive fall of a massive European cannon.

All these false assumptions—the unanticipated complexity of every little thing—makes me feel as if everything is wearing a disguise and I can’t even trust myself anymore, with how distorted everything seems. Every unidentifiable emotion feels inexplicably fraudulent.

Of course he wasn’t an egg. My lip rises in a cynical smirk. And he was probably pushed.

I lose all sense of time in my nursery-rhyme hypnosis. I am hoping that by the time the hot water runs out and Humpty’s bleeding has stopped, I’ll feel like I can step out again, leaving my demons to run down the drain.

This time it isn’t enough, though. This time something in me needs to scream; alarm bells need to sound and say Do something Anything just Do something.

I plug up the drain, lie down in the tub and submerge myself. The showerhead continues to spray down and liquid fills every hollow—air is pushed from my ears and nostrils; water weaves itself between my eyelashes and threatens to sting. There is a rush as it fills my ears, but then…

Hush.

Muffled vibrations from water pounding water engulf my head and pulse rapidly over the surface of my skin. Quiet reigns for moments, the silence working with the feeling of floating suspension and it is timeless. I am timeless.

Grandpa had a swimming pool in the back yard, and as a child I spent most summer afternoons there. It was so blue and clear and clean–it even smelled clean and I liked the way the scent of chlorine would linger in my hair all day, if Mom didn’t make me shower right after a swim. I loved the feeling of myself in the water; it was suspension, the only time I felt graceful. Like I was covered in cool glass, the old-fashioned kind–the hand-blown glass with ripples and dimples that they show you on field trips in second grade–but better because it was so pure and bright. Nothing makes a little girl feel beautiful like being covered in things that glint in the sunlight, and nothing made me feel beautiful like watching my limbs glide under that liquid crystal. They were distorted though, and strange, so it was easy to pretend that I was no longer human. That I was something else; anything else. I’d be Something Else underwater for a while, then run inside to be a little girl again, dripping water on the carpet and getting chocolate everywhere after Grandpa gave me Butterfingers.

My lungs scream for air—air and there are the bells in my brain screeching and after a few seconds of endurance the water rolls back in a single wave from my face and down through my hair and with a gasp of oxygen I am satisfied.

I step out and my skin is bright red. Red and raw, as if I’ve passed through fire and left my old skin behind, blistered and melted away so I can feel fresh and be clean again. The red makes scars stand out. A few are darker but mostly they are pale lines and once again I wonder fleetingly if they’ll fade as the years pass; how much have they already faded since I sustained them? Some of them still sting when I’m cold. Those are the ones I know will still stand out too red red red after a hot shower when I’m forty.

Three square cages, each about five by five inches, stuck out from the gallery wall. The bars formed from frosted glass, and a strange smell hung about them. Should art have an odor? It is subjective, I supposed. I came closer to see what the frosty cages held, and when I saw it the feeling never quite left me; it stuck in the back of my mind for years, like a barbed fishhook in my brain. I could not stop wondering, who’s dried blood crusted the pieces of gauze behind the bars and how were they hurt, and what became of them? Had they died? Was that real flesh, those red chunks stuck between the folds and please please take the bloody red red red and rust and the smell away because it stirs some primal instinct of wrongness inside me; a disturbed and filthy sense of dread.

A reminder of burning submersion remains with me: the sting in my eyes, red-rimmed and blood-shot. It gives me the feeling of having had a good cry, the kind I crave but cannot seem to accomplish.

I’m full of so many screams, but I’ve forgotten how to go about releasing them.

I want so much to feel clean and fresh again—without blemish.

Purification. Refinement by fire.

I haven’t achieved it yet.

~*~

For a month I’ve been writhing inside; needing to run or scream or both and crack somehow, or shave my head. It’s time to give my hands a break. They hurt, my hands do, and my wrists—they crackle when I move them—but I can’t stop twisting my hair. I just keep curling sections round and round my fingers until they’re wound tight up against my scalp. It’s time to give my hands a break but the second my hands have nothing else to do they’re up there again, wrapped in the long dreadlocks that hang to my shoulders.

The locks are woven through with mismatched strings of colored thread, yarn, and ribbons. The colors don’t go very well together; there are too many and they don’t go with any of my clothes. I used to love it, the whimsy of those colors peeking through one another. I used to appreciate the obscurity of the compact, nappy texture of the back-combed sections of hair that hold a rainbow so tightly. But now, it is just disorganized; cluttered. Red blue brown yellow pink green black orange andeveryeveryeveryothercolorthereis. It makes me dizzy; it hurts my eyes. And the tangles; suddenly I cannot stand them.

The dreadlocks seem to mock me as I look in the mirror—a physical representation of my heart’s knotted state—and so full of the cluttering color. Other things are in them too; bad things, caught up in the tangles: memories, feelings, conversations, regrets. They whisper in my ear when I turn my head, reminding me; they are heavy and everywhere. I hate them.

I fumble for a pair of scissors, start some music. At first I am careful, making sure to cut only what I need to, to make those long ropes go away. But soon my fingers are stiff and sore, and my cuts grow faster, choppy and approximate. Sad songs mostly—snip snip—upbeat makes me angry—snip—but I can’t stand silence—snip snip snip—so I am working ripping teasing out the tangles singing hoarsely along. I am pulling out the yarn and strings, dropping the rainbow on the floor where it seems to belong. With gradual relief I unravel the psychedelic mess.

I lose myself in the music, keeping time with that sssclk sound that the scissors make, slicing through my hair. Ssssclk, sssclk, ssssssssclk….it is soothing, it is hypnotizing; it is a smooth sort of destruction. I think of nothing. There is only ssssssssclk and the music, and then the fft fft fft of the comb and the occasional snap of a hair breaking as I work the remainder of the dreads apart.

I don’t know how many numb, methodic hours passed. Enough to play through eight full albums: two Sufjan Stevens, four Decemberists, two Iron and Wine. I think the sun set about halfway through Castaways and Cutouts. But finally my hair is short, the dreadlocks combed out and all of it is once again brown, all brown with comforting consistency.

My head throbs, balanced on neck muscles so tired they can barely hold it up anymore. The muscles in my back burn, too, and my hands twitch, cramping painfully. The repetitive action was too much for them. Three fingernails are broken, left thumb bleeding from a scissor-wound. The dark circles under my eyes are deep—deeper than usual. My hair sticks out unevenly in all directions, its texture a strange combination of stick-straight and frizzy.

I look how I feel: tired, wrung-out, bitter, and slightly manic. Diseased.

I look like Raggedy Ann with a harrowing meth addiction–complete with flat, plastic eyes. Broken.

I look how I will feel for the rest of my life. Sick.

There are worse things.

I stare at my reflection, for the moment indifferent, then curl up on my bedroom floor and fall asleep.