Miss Fickle’s Lupus Story

What Comes Next

 

My morning begins in the dark. I don’t know what time it is because I can’t see the clock on the wall. Not that I want to open my eyes—or, I should say, my good eye. I want to go back to sleep. But I’ve already heard the phlebotomist trundle up to my bed with her lab cart. I sense an electric throb that means the lamp over my pillow has been switched on. I know I’m about to be spoken to, so I crack open my left eye and let in the burning fluorescent light.

“Good morning, Ms. Frederick, I’m here to get a blood sample.” I feel my I.D. bracelet swivel around my wrist. All the hospital staff have to check bracelets before they can do anything to you. “Relax your arm. This’ll just take a minute.”

“That’s fine,” I mumble. I try to sound friendly, because this is Ames, Iowa, where friendly is the only polite emotion among strangers. To myself, I wonder why the lab people have to wake me up to tell me they’re taking my blood. They’ve been doing this every morning—always before dawn—for the past 9 days.

The phlebotomist chooses my right arm to take blood from. Inside the elbow. I can feel her swipe that patch of skin with an alcohol swab. There is an enormous pressure bandage wrapped around the right side of my head, covering my right eye. So I can’t see what she’s doing unless I strain, which, according to the nurses, is a big no-no for people with blood clots in their heads.

She rubs vigorously. “I see some bruises. Have they been doing you over here a whole lot?”

I nod. “But I think my left arm’s the better one.” My mind is too cloudy to form sentences for the details I’m supposed to tell her. Left arm better than right arm. Elbow doesn’t always work. Very small veins. Use butterfly needles. “Tell me when you’re about to stick me.” I manage to say.

“Sure.” I hear her snap on gloves, crumple a foil packet. My skin stretches under her fingers. “Here comes the pinch.” A quick stab of pain, and then nothing. The morning lab people can usually get blood from my arm on the first stick, and before 6:00 am, any lingering needle phobias have dissolved in my sleep.

Some glass tubes rattle against each other. “Be sure to hold still. I’ve got to fill five of these today.”

Sure lady, as if I want to jump up and start aerobicizing. The light is really starting to bother my eye now. I keep it closed.

“Okay, we’re all set,” says the phlebotomist, snapping the rubber tourniquet off my arm. Two seconds later, the needle comes out and a big hunk of gauze is crammed against the hole. “Put pressure on that for me.” She bends my arm.

Dutifully, automatically, I reach over and relieve her fingers from stopping up my wound. After she rattles some more lab paraphernalia against the cart, she unfolds my arm, tapes me, and trundles out.

“Thanks,” I say, smiling hazily.

“You bet,” she says as she switches off the light.

The room stays silent for a moment. Then my mother, who’s sleeping in a cot in the corner, starts snoring. The phlebotomist’s pre-dawn arrival never seems to wake Mom up.

 

So how did I wind up in an Iowa hospital with a choked-shut vein in my head? Good question. A better one is: what the hell am I doing in Iowa?

The practical answer, of course, is that I came out here for grad school. A creative writing Master’s program, to be specific. Ever since eighth grade, I’ve had it ingrained in my psyche that Iowa’s the place to be if you want to be a writer. I even remember the moment when, lying on the floor in my bedroom as I pored over the latest Writer’s Digest, I first heard about the Iowa Writers’ Workshop. The first, oldest, and most respected program of it’s kind, the article said. Only the best of the best get in. The article was printed in black and white, but my overblown imagination got out its fantasy box of Crayolas and colored between the lines: the University of Iowa, circled by a halo of golden sunlight under a jewel-blue sky, its academic spires rising over the midwest’s amber waves of grain like Emerald City over Oz. After I read the article, I had to lie on my back and breathe deeply, magazine draped over my chest. At that moment, I didn’t just want to go to Iowa—I knew I would go. I was destined. Even though I was a geeky teenager stranded in the middle of Pennsylvania, I’d make it my life’s mission to be among the divinely chosen.

So my girlhood dreams came true…sort of. In one of those nasty twists of irony that usually accompany tales of genies and wish-granting, I made it to Iowa, but not the Iowa. The writing program that accepted me was Iowa State University. The other Iowa.

That would be the straightforward answer to why I’m living here. The deeper reason for my being stuck in a land-locked state 1500 miles away from anywhere I’ve ever lived is: I have no clue. I’ve asked myself that many times, especially when I’m in my car, crossing and recrossing these narrow midwestern streets like a sewing needle. What the hell am I, a Pennsylvania girl, raised in the mountains, schooled in the east-coast urban sprawl, doing driving around a claustrophobic burg in the middle of pig country? Iowa City—or should I say Emerald City?—is still closed to me. And the rest of Iowa is about as far from Over the Rainbow as you can get.

Before I moved, I talked to some students in my program so I’d know what I was in for. Ames: population 50,000. A city by Iowa’s standards. Thirty miles due north of Des Moines, home of an international airport the size of an ambitious high school football field. 25,000 students also live in Ames. Most are science and agriculture majors who are not in the least bit interested in writing. A trip on Lincoln Drive, one of the main traffic arteries in Ames, will take you in and out of the city in a little under 15 minutes. A huge portion of Ames is occupied by Iowa State, the town’s painfully obvious reason for being. The red brick campus is the anchor around which, barnacle-like, clusters of residential areas grow.

Unlike suburban Philadelphia, where you can travel through nine consecutive towns without noticing a break in the flow of civilization, roads in Ames tend to stop after a few hundred feet. We’re not talking attractive, teardrop-shaped, we-meant-to-do-this cul de sacs. The roads just end. As if, when the pavers hit the city limits, they gave up and went home. This makes Ames an extremely navigable city. In fact, I’ve seen so many Ames maps by now that I can crowd the whole town into one universal mental diagram. Sometimes I like to picture this map-town at midnight: amber lights wavering peacefullly in the muggy summer air or flickering under frigid blasts from the Rockies. My mind holds the irregular shape like a jellyfish, with a tentacle gripping the blunt end of every street. But Ames is something that tentacles can’t yank away. The town is obdurate. Its geologic roots run deep.

Surrounding this indigestible stone are fields on fields of corn. Corn, corn, and nothing but. The crop is so ubiquitous it creates its own weather systems. In late May or early June, hundreds of thousands of stiff, green stalks release humidity into the air, making Iowa summers stickier and more fly-heavy than you would expect them to be. Cloud cover is virtually nonexistent. On most days in deepest summer, the sun is bare and throbbing, its heat bleaching the broad sky until horizon lines fade to white.

The sight of the corn also makes it clear you have nowhere to go. Endless, silent rows barricade and smother at every turn. Nature takes center stage here; humankind and civilization are trivialities. That’s what makes me wonder why people settled Iowa in the first place. To me, the message this land conveys is, if you’re not planted in the ground, you don’t belong.

 

Dr. Ajax comes at 6:00 am sharp. My second wake-up call of the day. After opening the blinds so I can’t drift off to sleep on him, he runs through some basic neurological checks, all delivered in a gentle, hushed voice. He’s a young doctor. Dark hair, big blue eyes. Wide mid-western grin. “I just want to do a couple of tests, now.” His stick-thin flashlight sweeps over my eye two or three times to check my pupil. “Great! Okay. Now keep your eye on my fingers as I move them around. Great! Now move your finger back and forth between my fingers and your nose. Great! Left hand. Great!”

I push down with my hands, up with my feet. Once he decides all is well, he flashes me one last Big Sky smile, says good morning to my mother, and leaves.

My mother is a morning person. Her usual wake-up time happens to be 6:00 am. So no more sleep for me today. She stretches to stand up and peeks out the window. “Still lot of snow out there,” she says through a yawn.

I yawn in sympathy. “I am so very glad I’m not out in that.” Amazingly, the day after I was admitted to the hospital, Ames got hit by a tremendous blizzard that left about three extra feet of snow on the ground. To my knowledge, snowfall in an Iowa winter is about as common as corn fields are during the rest of the year. But getting so much at once knocked the entire state off-kilter. My mom managed to fly in from Pennsylvania ahead of the blizzard. My dad got stranded on the east coast for 24 hours and then had to drive up from the airport in West Des Moines. The highway, he said, was barely passable, and there were abandoned cars strewn all over both sides of the road. Like driving through Beirut, he said.

Mom pulls on sweats and staggers stiffly toward the door. “Should I bring up something from the cafeteria, honey?”

I nod. “Donuts, if they have them. Chocolate.” My stomach has finally woken up, and it is empty. Black-hole empty—a pinhole singularity, burning with the need to suck in food. The hunger has been there for days, ever since I got hooked up to a steady IV drip of corticosteroids. The biggest problem with getting woken up at 6:00 am here at Mary Greely Hospital is that breakfast isn’t served till 9:30. When you’re on steroids, you need food to be there as soon as you’re conscious.

“I’ll be back,” Mom says, hesitating, reaching down to squeeze my arm on the way out. She’s already nervous. I should be nervous, too. At this very moment, my posse of doctors—two internists, a neurologist, an infectious diseases specialist, a hematologist, and an ear, nose, and throat doctor—might have an explanation as to why a blood clot has blossomed in my head. They’re pretty sure I have this rare blood disorder called antiphospholipid antibody syndrome. It basically means my blood clots too much—more of a description than a diagnosis. Dr. Graves, one of my internists, also mentioned that the syndrome can be linked to lupus. But my parents and I shouldn’t worry about lupus yet, he said.

I know I should be preparing myself right now. This is the one time of day when I can count on being alone, which is what I usually need to figure out what I’m feeling. But even on this morning, in the final few hours before the verdict descends, the event horizon in my gut is sucking up all my attention. I don’t want to think. I lie very still and wait.

 

I’m not really that upset about being hungry all the time. It feels good to be able to eat. When I first got sick and could barely get out of bed for two weeks, nothing but oreos and occasional spoonfuls of applesauce would stay down. This was when the doctors at the Iowa State Student Health Center were telling me I had a “persistent virus.” Translated, it meant they weren’t going to do anything. Except maybe force me to drink water and call campus security to get me a ride home.

Once, after I’d drunk about a dozen glasses of water and taken some Zantac (to calm my virus-afflicted stomach), I only rode a block in the security guy’s car before I made him pull over so I could get out and vomit. Since I was a certifiable geek girl and never partied in high school or college, I’d never puked on the side of the road before. I’d never puked up so much liquid, either, but this one time, a block from the health center, torrents of water were gushing from my mouth. All I could think about was what I might look like to the people walking by and what the security guy thought of a college girl throwing up in public. Also, I remembered a comedy routine of Tom Arnold’s—I can’t remember what it was about, but in it he had some sage advice for the drunk frat boy: remember to spread your legs wide so you don’t puke on your shoes.

When the river finally ended and I could stand up, I got back into the security car and was driven home without a word. Immediately, I headed for my bed. (I couldn’t stay vertical for very long at that point. Something in my body wouldn’t allow it.) As soon as I was as comfortable as I was going to get, I called the health center and told the nurse I’d thrown up my Zantac already. Sounding annoyed, she told me to go take some more and hung up.

 

After breakfast, I get a phone call from Dad. The rental car he’s been rattling around in for a week has serious braking issues. He tells me he’s going back to the dealer this morning to get something a little less potentially lethal. Mom wants to go back to my place so she can shower and take my month-old mountain of dirty clothes to the laundromat.

“I’ll only be gone for an hour or so,” she tells me, packing up her bathroom things, “This is the best time to go, don’t you think? Dr. Graves won’t be coming any time soon, right?”

“Nah, not this early in the morning.” I’ve memorized the visiting rituals of each of my doctors. Dr. Graves is an afternoon man, without a doubt.

“Well, all right.” Again, she hesitates by my bed. “I’ll be back in a while. Remember to keep the head of your bed up, like Dr. Ajax said.”

“It’s up, don’t worry.” I smile at her. “See ya later.”

This time I get a pat on the forehead before she goes.

 

It’s strange how illness creeps up on you. One Thursday afternoon, I’m a teaching assistant taking attendance in one of my two Freshman comp classes, my mind fixed solely on the frozen margarita I’ll be guzzling by the end of the day. (My geek-girl prudishness about alcohol is long gone.) The next morning, I can’t get out of bed. I don’t want to wake up. It’s February; I assume I have the flu. That’s how it started—easy and mundane.

The next thing I know, I’m confined to horizontal surfaces: my bed, an examination table, a bench in the Health Center when the doctors are too busy to see me, or the living room floor of the house I’m sharing with two fellow English majors. To them, I’m unclean; it’s thesis season, and neither housemate wants my germs. While I’m lying in bed, in my room on the first floor, I hear a bottle of Lysol being sprayed over household objects I’ve touched. Gradually, I become an inanimate fixture. People walk over me while I watch t.v. with my eyes shut. My roommates crack open my door every couple of days to make sure I’m still breathing. I can’t eat. I vomit what I force myself to eat. Another Tuesday or Thursday morning will arrive, and I’ll have to call the English office to tell them I can’t make it to yet another of the classes I’m supposed to be teaching. Mainly, I lie in bed. I sleep for 20-hour stretches. At night, when the road in front of our house is quiet, I hear an endless volley of explosions, some far away, some close to my ear. The sounds never stop. I feel like I’ll go crazy from the noise.

Then one night, I walk out of the bathroom and notice that everything I look at has a double stacked on top of it. Like casino cards. It hurts to keep my right eye open, so I walk around like Popeye with one set of eyelids screwed shut.

The double-vision leads to a referral to an ophthalmologist. I take a bus to the Wolfe Eye Clinic because my housemates aren’t around to drive me. I worry about my jeans, which are so baggy they might slip off my hips in a stiff wind.

At the clinic, as the receptionist waits for me to dig up my insurance card, I slowly manage to dump the entire contents of my purse onto the floor. I have to scramble around on my hands and knees to pick everything up. My eyes are so bad I can’t see where my credit cards and ATM receipts and all the little scraps of paper stuck together with gum have landed. The floor rocks and twists with mirror images. Sadly, I realize how pathetic I look to the other patients in the waiting room. Me, my squinty eye and sagging pants, lurching toward the nearest seat. I feel like I’m a hundred years old. I can even sense the old guy in the wheelchair pitying me from across the room.

I wait in the waiting room, then they call my name and lead me to an exam room where I do some more waiting. A typical doctor’s visit. The room is dim, and I don’t enjoy having to sit in the big leather exam chair with all its spidery, mechanical arms. I’ve been sitting up for an hour and a half. I’m hurting for any horizontal I can lie on. The tile floor begins to look cool and tempting.

Before I get desperate and make myself into a human throw rug, the ophthalmologist walks in. A white-haired white guy, heavy set. Balding, I think. I can’t quite see in this light. Very no-nonsense, he starts in with the eye exam right away. He shines a light in my eyes, and for the first time in two weeks, I hear the voice of a medical authority express concern.

“Your optic nerves are really inflamed,” he tells me. “I think you should see an internist.”

Oh, God, another doctor. Another ride on the bus. Another afternoon of away from my big, flat bed. The ophthalmologist leaves the room again, and I wait for what I guess is half an hour, if I’m reading what it says on my watch. Then he comes back with my chart under his arm.

“Here, take this.” He hands me the folder. “I’ve made you an appointment with Dr. Yoder, one of the internists at McFarlaine.” The clinic across the street, right next to the hospital. “You have five minutes to get there.”

As I waddle up the sidewalk to my internist’s appointment, I can’t stop myself from smiling. Something tells me a Persistent Virus is no longer my problem.

Dr. Yoder’s office has a nice, level exam table, where I can lie with my eyes shut while he asks me questions. “So why can’t you sit up? Does it hurt?”

“No.”

“Do you feel nauseated when you sit up?”

“Not really. I just feel…wrong, that’s all. Whenever I’m up, I need to lie down.”

Dr. Yoder says nothing. I hear his pen scratching across my chart. “I’m going to have one of our neurologists look at you. Just relax. I’ll be back soon.”

Relax? I think as the door swishes shut. Of course I’m relaxed. I’m in paradise! I’m lying on a sanitary, paper-lined surface. It’s quiet. There’s nothing to look at and nowhere I need to be. My legs dangle over the edge of the table, and I swing them back and forth as if I’m a five-year-old again. I could lie like this till the day I die.

Time passes. The neurologist comes in and introduces himself as Dr. Ajax. I lift my arm long enough to shake his hand. While he examines me, I keep my hands on my stomach, one on top of the other. I am peaceful. Like a field full of grass or an iced-over pond.

Dr. Ajax leaves the room again, to talk to Dr. Yoder who’s waiting in the hall. More time passes. He is gone and back again. This time, he wants me to sit up. He takes a seat in a chair by the wall so he can look up at my face.

“Melissa, we don’t know yet, but we’re pretty sure you have a blood clot in your right sigmoid vein. That’s the vein that passes by your ear and carries blood to the brain. It’s a very low-risk situation.” He says quickly, anticipating my response before I have one. “We caught it just in time. We do want to get an MRI of that area so we can see exactly what’s going on.”

“All right,” I say pleasantly. “When should we schedule it?” I think I can probably skip out on another Tuesday class.

“Oh, no.” He smiles and shakes his head. “We’re admitting you to the hospital right now. You’re just waiting here until we find you a free bed.”

That makes my eyebrows dart up. “The hospital?”

He nods. “I’m sorry you’ve had to wait in here for so long. It shouldn’t be long now.” He stands up to leave. “When we find space for you, we’ll send a nurse by with a wheelchair.” Another handshake, another smile. “Don’t worry, you’ll be just fine.”

The door floats shut yet again. I lie back down as soon as I’m alone. Dr. Ajax didn’t have to console me. All I want to do right now is laugh. I have a blood clot! What wonderful news! Boy, does God know how to throw a curveball. And finally someone believes I’m sick and they can do something. Finally, I’ll get to be taken care of.

 

I’m wrong about Dr. Graves. About twenty minutes after Mom leaves, he strolls in, gives me a handshake and a smile before I can open my mouth.

“Good morning, Melissa.” His face is sharp and cuts across my field of vision. His eyes are calm and blue. “How’re you feeling today?”

“Oh, I’m fine.” My stomach starts to go cold. I feel exposed, like I’m standing on a battlefield with nothing but the push of the wind behind me. “So, are you here to talk to me about…”

“Yes, absolutely.” He pulls a chair closer to my bed. The room is shadowy again. One of the nurses must have closed the blinds while I was dozing. Dr. Graves brushes a finger over his bristle-brush mustache as he flips through my chart. “All the bloodwork is back from the Mayo Clinic. I’ll go over the results with you in a minute, but first I want to see…” His voice trails off, then: “Oh, and feel free to ask me questions any time while I’m telling you this. It’s going to be a lot of information all at once.”

I pull the pink hospital blankets closer to my chin. “But my parents are supposed to be here…”

“Oh, yes. Don’t worry, I can answer any questions they may have, too. I’ll leave my pager number before I go.” He’s not looking at me when he says this. Instead, he’s running his fingers down the multicolored pages of my chart. It has a red plastic cover and is now about as thick as a Stephen King novel. “Right. So, just to go over this with you one more time, you were admitted to Mary Greely on March third for a venous thrombosis in the right sigmoid vein. You were having headaches, nausea, vomiting, developed some diplopia, and Dr. Thomas did a mastoidectomy on…Tuesday of last week?”

I nod at every fact he lists. “Originally, Dr. Ajax and Dr. Yoder thought I had some sort of infection in my mastoid bone. Because something showed up there when they took the MRI.” It’s pretty obvious that I’ve had my head operated on, what with half my face covered with a pressure bandage. But it seems like all there is to do is nod.

Dr. Graves is nodding with me, eyes locked on my chart. “But when they opened you up, all they found was blood, which they determined was secondary to the formation of the blood clot.” That meant the blood clot came first. Dr. Graves taps his pen on the page. “Yes, okay, I think we’re all up-to-date here. Now, what we got back from Mayo…” More page flipping. “…was pretty much what we expected. Your ANA turned out to be positive, and your sedimentation rate…is fairly high. But the rest of the bloodwork looks pretty good. There’s no sign of any kidney or liver dysfunction.”

“That’s good to hear.” I giggle politely. All of these words are soaring over my head. I feel like I’m playing the happy hostess to a foreign exchange student. Talk slow. Smile wide. Nod at everything he says to you.

“They did detect some anti-DNA antibodies as well as the lupus anticoagulant…”

A little stab of fear hits me. I heard him say the word.

“…and with your history of pleuritic chest pain and photosensitivity, we’ve been able to diagnose antiphospholipid antibody syndrome along with lupus.”

He still sounds calm. His voice never waivers. He looks up at me, a smile still on his face. A waiting smile. A quick, heavy panic drops through me. A coin into a dark well.

“Aaagh! That’s not good,” I say.

I don’t know what kind of a look I have on my face. As soon as I react, though, he pulls his chair closer and begins talking more quickly. “Really, I wouldn’t worry too much about the lupus. You seem to have a very mild case. Your blood is the only thing that’s seriously affected.”

I look into Dr. Graves’s face, a flinty arrowhead pointing at my throat, while my mind rifles through every scrap on information I’ve ever heard about lupus. Lupus, the wolf disease. Richard Dreyfus’s wife has lupus. Ex-wife now. That was something I heard on a Barbara Walters special. When I was a teenager, my mother and I had a subscription to Discover magazine. One of their regular on-call columns told a story about a woman whose brain was affected by lupus. For five years, she could barely move, not even to speak. When she recovered enough to talk again, all she said was, Change the channel. Or, What’s for dinner? Something ordinary like that. Her first words in five years, and after she said them, she went right back to the way she was: mute and motionless.

I swallow. “Well…what should I expect from this?” I know I should be asking specific questions, gathering as much information about my diagnosis as I can. I know my mother would have taken care of the questions if she were here.

“I’d say your prognosis is good.” This time, some gentle concern shows in his smile. “Of course, lupus is a very unpredictable disease. And it can affect every system in your body, usually the kidneys and liver, sometimes the heart and brain and nervous system. But every person’s symptoms are different. That’s why researchers have made so little progress in trying to find out what causes lupus.”

My mind chews the information slowly: a disease that can hit me with a brand-new catastrophe at any moment, anywhere in my body, without warning. And no one knows why.

“But really, your lupus seems to be quite mild. The only symptoms you have are from the anticoagulants, and those can easily be regulated with coumadin. You’ll have to take it daily, though. And you’ll have to monitor your blood carefully. Maybe get it tested once a month. You won’t be able to get private health insurance, either, now that you’ve been diagnosed with a chronic illness.”

I’m silent through most of the discussion. Still processing and interpreting. I’m usually quiet when bad things land in my lap. Dr. Graves probably thinks I’m being stoic. He doesn’t try to take my hand, though. And I don’t want him to touch me.

“Well, I hope I’ve answered all your questions for the time being…” He closes my chart and starts getting up.

“Wait a minute.” My parents are supposed to be here for this. They’ll want to know all the details. That’s the doctor’s job. But now I’ll be the one relaying the message, in whatever scrambled, vague way I remember it. I have no way of reaching my dad, but Mom, at least, is at my place. “Could you stay for a few more minutes while I call my mother? I think she’d want to talk to you…”

“Absolutely.” He hovers patiently over my bed.

Quickly, I grab the phone and dial. One ring, two rings, three rings…

“My mom’s supposed to be at my house sorting my laundry,” I explain, trying to sound chatty. “I don’t know why she’s not answering.”

Four rings. My own voice on the answering machine kicks in.

“I’m really sorry about this.” I smile weakly as I listen to the scratchy recording.

Dr. Graves shakes his head. “Perfectly all right.”

Finally, the beep sounds. “Mom, Mom, if you can hear me, please pick up the phone.” Pause. “Mom, I’m with Dr. Graves. He’ll be leaving soon, and he wants to talk to you.” Pause. “I don’t know why you’re not picking up, but if you can hear me, please come to the phone right now. Please? Mom?”

She never answers. I have to hang up, shake the doctor’s hand, and send him on his way. Grinning, he waves at me from the doorway, as if he just handed me a lollypop.

 

Dinner comes at 6:00 pm. So far, most of my hospital meals have consisted of meat and starch, gravy, boiled vegetables, and goo. Nothing fresh. A standard, all-American meal. Last night, I decided to be bold and wrote “cheeseburger” on my ordering menu. I even circled what I wrote, as if that made my choice more official. Now, my cheeseburger is wheeled in by the nurse, who sets up my dinner tray on my moveable bedside table. I sit up to eat. The perfectly circular bun sits in the middle of a pink plate, empty except for a leaf of iceberg lettuce, and a slice of unripe tomato. The burger is flat and gray and bland—didn’t think to ask for ketchup—but at least I don’t have to suck it off a spoon.

I devour my cheeseburger three bites at a time. “So what’s the verdict, Mom?” I ask between mouthfuls.

Mom sighs over the hospital pamphlet she’s looking at. Mom, Dad, and I are all trying to figure out what exactly lupus is. It’s not an easy thing. Lupus seems to work on a cellular level and causes so many syndromes they all blend together into pathological mush.

“Well,” Mom says carefully, “as far as I can tell, having lupus means you have an overactive immune system. Your body makes too many cells to fight off infections, and then those cells start attacking body tissue.”

“Oh. Sort of like the opposite of AIDS,” I say. At the same time, I’m thinking, Perfect. I’m 24, I drink one margarita a week, never smoke, study constantly, don’t even have a boyfriend I’m humping, and now I have reverse AIDS.

Dad won’t stay in his chair. He jumps up for the nineteenth time and starts pacing the room. “I don’t buy it,” he says, shaking his head, arms crossed in front of him. “I don’t care what these doctors say. It’s too easy to misdiagnose something like this.”

“Bob, please.” Mom rolls her eyes. She’s tolerating Dad, but just barely. Both of them have been good about sitting in the same room for hours on end, which they haven’t really done since they split up nine years ago.

But now Dad’s not hiding his antsiness. “I’m sorry, I’ve heard too many stories about people getting told they have lupus and then finding out they don’t.”

“Well, Dad, I do have this blood clot in my head, don’t I? I mean, how can that not be a serious illness?” Dad’s putting me in a seriously crappy mood. I’m glad I ordered hot chocolate with my dinner.

Dad shrugs. “What can I say? Doctors have been known to be wrong.”

“Yeah, tell me about it,” I say with a snort. By now, I know all about doctors being wrong. But even though this diagnosis dooms me to an uncertain future, and the potential to wind up back in the hospital, I want the lupus label to stick. No more Persistent Viruses. Now, if I have weird chest pains, or if I want to sleep 17 hours a day, I can point to something: that little tatoo of a wolf on my arm. It’s an elite club. Special privileges come with the lifetime membership.

“I gotta go to the bathroom.” I hoist myself off my bed. Immediately, Mom and Dad are hovering around me, grabbing cords, rearranging tubes so I can lug my IV unit with me to the toilet. As I’m walking, I catch a glimpse of my face in a mirror. I stare at myself for a while before I realize I don’t recognize what I’m looking at. My face is thicker somehow, with no defining bone structure, and my nose has become long and pencil-thin. I stare into my left eye, which I can see is still blue, but I have a hard time keeping it in focus because my head is bobbing back and forth.

“My face isn’t right,” I say.

Mom comes up behind me, IV tube in hand. “That’s just the steroids, dear. They make your face puff up.”

Sweet Jesus, I think as I watch the huge head twitch in the mirror. How do you keep track of who you are if you don’t even know your own face?

 

The day ends with Mom about to go to sleep in her cot and me watching T.V. news magazines. Tonight, the second of three 20/20 segments is about a four-year-old girl who needs a five-organ transplant. Barbara Walters explains that this girl has a rare disease that has made her digestive system go south, and after the first 15 minutes of the show, her liver is failing, too. Her tiny body, tucked into pure white hospital sheets, is bright yellow. She doesn’t seem to mind this, and her mother, who’s sitting at her bedside, is smiling too much. I guess she’s trying to keep down the urge to shriek in horror.

This personal-tragedy segment has a happy ending, as many of them do. After getting registered on organ transplant lists in 3 states, a team of doctors finds a match and replaces her four-year-old, already worn-out organs. The donor was a little boy who drowned in the backyard swimming pool. I’ve never quite been able to feel completely happy about medical victories like these. An organ donation always hints at the donor who’s not with us anymore.

I switch the t.v. off early because I’ve had all the heart-wrenching I can take for one night. Mom has already dozed off, so I have to get out of bed and turn off the lights myself. When the room is dark, my new face falls on my pillow. I shut my eye and wait for what comes next.

 

 

3 responses to “Miss Fickle’s Lupus Story

  1. Pingback: My Life on Lupus: I Fear | Miss Fickle Reader's Backwater Domain

    • Thanks, Dave. I appreciate the support. Our student health center at that school I was attending long ago was particularly bad. Another woman in my program had a ruptured appendix, and she had to argue with the nurse on the phone to get them to send her to the hospital. I’m hoping in the past 20 years, student health has gotten better.

      But I’ve also been an instructor at various colleges and universities, and I can imagine students lining up around the block to get a doctor’s note so they can drop a class or miss a final. The whole secondary education system is something of a mess these days. Stay strong, my friend.

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