“I have a date tonight,” I wrote in my journal during the winter of 2004. “Can’t wait to dance.”
Twenty minutes before he’s scheduled to knock on my door, I click the wheel of my iPod, press play on George Michael, and swallow half of a Xanax to relax—along with a gray cylindrical pill for narcolepsy to keep me from getting too relaxed. I want a glass of wine, but I can’t have alcohol, so I opt instead for a St. Pauli Girl near-beer from the fridge. Without thinking, I twist off the cap and gasp as the grooved metal teeth tear into the meaty shank of my thumb.
“That’s never going to stop bleeding,” I think. “You keep forgetting that you don’t have any platelets.”
Blood drips between my knuckles and splatters on to my swollen feet. I wrap paper towels around my hand, ignoring the primary red turning the turquoise Easter bunnies on the Bounty extra-absorbents into muddy Rothkos. I snatch the bandana off my bald head and knot it around the wad of paper towels in my fist. My new club of a hand matches my clubbed feet. Glimpsing at my distended silhouette in the oven door, I wince and quickly look away, a new allergic reaction to mirrors and plate-glass windows. I try to find a safe place to rest my eyes in my temporary apartment in Houston. Temporary has become three years.
Just outside my patio doors, I hear the gurgling fountain in the man-made duck pond slow down and turn off, like it does every night at nine. There aren’t many ducks left out there. My neighbors say there’s something wrong with the water.
I stare at my fridge door. The People magazine Sexiest Man Alive cover with Jude Law. My mom used to say I looked like him. There’s a bright yellow Lance Armstrong card for my 30th birthday. A laminated “pain scale”—five hand-drawn smiley faces graduating from what looks like “no worries, brah” to “CIA black site interrogation.” There’s my dry-erase calendar, filled with Magic-Markered numbers reporting daily blood counts and smudgy guest registries, most erased and rewritten. (Or just erased.) A diminishing return of ex-boyfriends, caregivers, Wiccans, and Hail Mary experts found during late-night Google searches and waiting-room magazines. Appointments with Native-American potion makers, a Buddhist monk meditation teacher, platelet specialists from Kiev, pain management doctors from New York, bone marrow scientists from Buenos Aires.
On the freezer door hangs the only art in the apartment, which was drawn by kids in my dad’s congregation, signed with hearts, xoxos, a “get well soon” or “Jesus saves!” The newest arrived today; my mother taped it up before she went back to Arkansas. Some kid named Nathan drew a muscular, bearded angel flying above a darkened and post-apocalyptic skyline, his wings pointed toward a distant church steeple on a bright pink hill. He signed it with an all-caps bubble-letter caption: “WHAT ARE YOU WAITING FOR?”
I look at the clock. My date will be here in 10 minutes. I hope he looks like the angel.
I have cancer. Had. I had cancer. After three rounds of unsuccessful chemotherapy, I received a bone marrow transplant just before my 29th birthday and immediately hit remission. My boyfriend and I celebrated. We packed up the apartment and laid down our Livestrong bracelets. Then things got worse: I contracted a rare condition where my platelets disappear. Not long after, my boyfriend did, too.
“It is as if your platelets stood you up!” my relentlessly upbeat and up-speaking Swedish doctor told me the day after my body started rejecting transfusions. This was his attempt to put perpetual bleeding into relatable dating terms. “But they will return! I know it! You know, as in, what is that movie? Where he disappears but comes back? In the rain!”
I blinked at him without eyelashes.
Blink. Blink. “The Notebook?” I guessed.
A year later, my count hovered around 10,000 every day. Sometimes it was zero. While my doctor, parents, and I had long stopped discussing “normal,” the “desirable” number to have “show up” in one’s bloodstream for hemostasis and clotting is 300,000. I had become one of those chronically ill people at the roots of prayer trees, a bold-faced name in church newsletters, and, I feared, the forthcoming star of donation jars at Mid-South gas stations.
“A new normal,” is what the desperate say in hospital waiting rooms. Every morning I swallowed 17 pills before cabbing it down the block to Houston’s MD Anderson Cancer Center, where I got propped up on Prednisone and experimental drugs and day drunk on IV painkillers. In the afternoon during a six-hour infusion, I mouth-breathed at a muted Oprah and TRL and read my stack of Us Weeklys and Cosmo Girls. As they hung the last bag around five or so, I put my earbuds in and clicked the wheel to my favorite song. Staring at the empty fish tank next to my bed, I followed the monk’s explicit directions: Visualize every single squid-like platelet in my body and command them to come together. I closed my eyes and breathed deeply, in and out, and found myself soaked up by the urgent bassline, the untz-untz-untz of George Michael’s “Fast Love.”
I imagined the starfish-like cells hitting the dance floor. They wiggled around and reached out to each other, linking tentacles as I cheered them on, hoping they’ll find each other in the smoky darkness and pile together, becoming one big grooving mass, moving in unison to the beat of the music and strobe light. At the bridge, the music got faster. I saw them moving. Spinning, grinding, twirling under a giant disco ball. As the music faded off, they started to disperse. I yelled at them. I pleaded. Get back out there. Dance, cuddle, coagulate, and clot. As the song repeated, I started counting them, one by one, trying to get to 300,000. That’s when they could scab my entire body over from the inside out so I could heal; so I could be touched.
When I woke up, I counted other things. The minutes, hours, or days since I’d worn jeans or held hands, eaten chips or toast—or anything with sharp corners. How long it had been since I was a little spoon, kissed a guy, had eyebrows, or mindlessly swayed in the middle of a crowded dance floor.
I ended up in the ICU every other week, always with a new, Dickensian ailment. One of the medications burned off the nerve endings in my feet the previous month. Then, I started bleeding in my brain. These dovetailed one day at the mall: While at the Gap, I suddenly saw a burst of stars, lost my balance, and buckled to the floor like a forgotten marionette; my sweat-panted ass, do-ragged head, and Birkenstock-wearing feet tangled in the middle of a sale rounder. I awoke to two 15-year-old sales associates peering through a rainbow curtain of discounted pocket tees, screaming, “Ma’am? Oh, my lord! Somebody call 911! Are you okay, ma’am? Ma’am!”
I stabilized yesterday. I lived so close to the hospital, I was allowed to go home. “We know where to find you,” my nurse told me. I flinched as she patted my back with her latex-covered hand.
My body—now further stretched, bruised, and bloated—was officially beyond recognition. I shuffled along the hospital hallway carrying a People magazine with all the details of Kenny Chesney and Renee Zellweger’s wedding, an increased prescription for Lexapro, $500 in cash, and a plan. I hadn’t danced with a man in 14,892 hours. That, at least, I decided I could change. For the first time in three years, I was in control. For the first time in three years, I felt alive. For the first time in three years, I was going to be in a dark room with a stranger who wasn’t a phlebotomist. I got in the cab and visualized the distant pink hill with the steeple.
A car pulls up outside. Sounds like a big truck. I feel the tingle of impending naughtiness, of carrying a secret. There is a dignity to secrets. Everything there is to know about me is connected to a bar code on a wristband I’ve worn for three years. Number 529902. Every place I check in, from getting my counts to the clinic where my blood is cleaned for five hours a day to getting a platelet transfusion then back to the clinic to the eye doctor, because “we need to clog your tear ducts,” to the ER, because “now you have an infection, likely picked up at the clinic.” At every check in, they scan my wristband, and there it all is. Everything about me, right there on a screen. Then, they look from the screen to me. I get the same lopsided “hang in there” Katie Couric smile.
A knock on the door. I pause the iPod. I don’t look in the mirror, I know what I look like. My cap slides over my patchy, downy head of baby hair, and I smooth out my Swedish maternity wrap pants. Size 14 Nike Dunks decorated with Marc by Marc Jacobs enamel letters conceal my previously size 11 feet. At the last minute, I slide on enormous plastic Prada sunglasses. I look as if Paris and Nicole had styled Madeleine Albright for a guest appearance on The Simple Life. I turn the door knob, realizing it’s too late to take off my Joan Rivers bee pin.
His name, he tells me, is Cliff. He asks for his money, but has the generosity not to ask what’s wrong with me. He shoves his shaved, meaty forearms into his boot-cut Abercrombie jeans and shifts his body weight from one flip-flop to another. We exchange a laugh because we’re wearing the same Von Dutch trucker hat. Disarmed, I take off my sunglasses.
“Where do you want me to dance?” he asks.
“Not for me,” I say. “Dance with me.” I press play.
“I like George Michael,” he says.
Almost 15 years later, a cache of journals pour out of a ripped box and on to the floor of my new house in San Francisco. My boyfriend of two years picks up the one labeled “2004.” When he opens it, I gasp. My plastic hospital bracelet falls out. “Oh, wow,” he says, picking it up and sliding it back in to the middle. “You definitely need to hold on to this.”
He scoops up all the journals and carefully places them on a book shelf. “I know you don’t like to talk about that, but one day you’ll have to tell me what all happened back then.” He gets back to hooking up the speakers in the living room. A few minutes later, he calls down the hall. “What should we play first?”
I think about it for a second. “Something George Michael!” I yell from the hallway. I hear him talking to the smart speaker, saying something to Alexa. “Faith” comes roaring out of the living room. I walk in to the room and, as he does anytime any song comes on, Ramon pulls me into his arms to dance.
Love Stories is a series about love in all its forms, with one new essay appearing each day until Valentine’s Day.