In 2013, Angelina Jolie tested positive for BRCA1. She removed her breasts. In 2015, she removed her ovaries. For $199, 23andMe offers an Ancestry and Health genetic test that tests for, among genes, BRCA1 and BRCA2.
They said that the test cost 20 dollars. They were wrong. It cost me 30,000 dollars. They never gave me that back. My fingers flutter over where my chest should be. They never gave me that back either.
The government recommends a genetic test when you turn seven, scanning for all of the hereditary diseases known to humankind. Why wait for sickle cell anemia to develop or Huntington’s? Why wait for a child to begin to wither before they begin to administer life-saving medicines when they can take a vial of blood and a tube of spit and know?
I remember when they took mine. The nurse, face full of Botox, hair crunchy, dry and yellow at the ends, sat me down on a white bed, covered in a white sheet. When she rolled up my sleeve and pressed the needle into my skin, I felt my arm going numb.
I began to wail.
The nurse frowned, pressing her stiff eyebrows together, but continued pulling the plunger. My mother patted my head and talked to me in soothing tones. I would not soothe, I remember that. Looking back, I realize my foolishness. I didn’t cry because I was scared, I didn’t cry because I knew the implications; I cried because I didn’t like the light and the pinch of the needle.
Slowly, slowly, the bag filled up with maroon blood until finally the nurse undid her eyebrows and pulled the needle out.
A tiny pearl of blood ballooned out.
The nurse couldn’t get me to spit in a tube; I was hysterical, flailing my small chubby fists. She stared at me, no doubt perplexed, as she changed her gloves and jerked at her pale white dress.
Finally, she grabbed my face and squeezed my cheeks, forcing my jaws apart. My mother started forward but apparently thought better of it. It took forever for her to harvest the saliva; I can still taste the bitterness of whatever they put in my mouth. I could feel the sharp edges of her nails. They were going to leave marks.
Being seven, I forgot about the experience within a few days.
So when my mother and I were called to the geneticist’s office, I thought nothing of it.
The same nurse stood in the waiting room; her scarlet lips were a thin line and her tight face was as pressed together as it could be. My fingers clutched my mother’s hand tighter.
As we got closer to her, we could see the ridges of bone in her hand; her skin was so pale it seemed faintly translucent; her blonde hair had turned a shade of nauseous green at the tips. She was sinking. I didn’t know why.
The doctor called my mother in first; her heels clicked down the white hallway. They talked for a long time, their voices echoing distortedly. I swung my legs, too petite to reach the floor.
The nurse was glancing at me, a small ridge between her brows. I studied the ground; something about her scared me. I was relieved to hear the click-click-click of my mother walking back until I saw her.
She was holding a yellow, folded sheet of paper; her knuckles were white. Her back was stiff. I pulled the sheet from her and opened it. A line of red down the page.
I tested positive for BRCA1 and BRCA2 mutations.
“They’re cancer genes, sweetie,” the doctor said to me, clicking her nails on the table.
“What does that mean?”
“If you don’t get treated, you could die.” With that, she stood up and shooed me out, closing the heavy metal doors behind me. As I walked out in a daze, I heard her turn to my mother. “Let’s discuss her treatment options.”
My mother scheduled two surgeries.
“A double mastectomy and an oophorectomy,” she said.
“What does that mean?” I said. The words sounded big and scary.
“The doctors need to remove… parts of you so that you’ll be healthy,” she said.
“Are they going to hurt me? I don’t want them to hurt me. I don’t want to get parts of me removed!” I said.
Tears popped into my eyes.
“It’s alright, sweetheart,” she said. “I won’t make you do anything you don’t want to do.”
I remember walking into the surgery room and lying down on one of those beds that the nurses wheel around. The man smiled tightly and fit a mask over my mouth and nose. I was scared.
“Just breathe,” he said.
“It’s alright,” he said.
The blaring surgery lights flared up.
I remember waking up from the surgeries, my body throbbing. When I opened one of my eyes, the lights glared down at me. I felt bandages wrapped around my body.
They had taken away my breast tissue, not yet fully developed, and my ovaries.
I started to cry.
The tears soaked into the bandages and then the man who had put me to sleep walked over to push me gently back onto the bed.
So I cried lying down, the tears slipping through my hair and soaking into the pale white sheets.
The call came when I was doing my physical therapy in the living room. My mother was sitting on the couch, scrolling through her phone when it light up with a FaceTime call.
I paused; calls interested me, but I wish I had tuned it out.
I could hear a stretched voice, speaking quickly.
“Good morning. As you know, your daughter recently tested positive for the BRCA cancer genes,” the caller said.
I set down my weights, feeling something that wasn’t my bandages or my sutures twist in my chest. I clambered onto the couch, wincing, so that I could see the caller’s face. It was a woman that I didn’t know. Something about her worried me; I had gotten good at reading faces. She was terrified.
“You must understand, the tests are not 100% accurate. There are always mistakes, every year there are mistakes,” she said, her voice rising in pitch and speed.
“What do you mean,” my mother said, her voice a whisper.
My chest felt tight and I noticed a pain that I had never really felt spreading throughout my body.
The woman reached up with one ruby-nailed finger and pushed a curl of hair away from her face. “We ran a second set of tests, a more accurate set,” she said. Deep breath. “Your daughter was not positive for either.”
“What?” my mother said. Her voice was quiet. I clutched on to her.
“The tests are not 100 percent accurate!” The woman said.
She took a deep breath and her voice grew more modulated and calm.
“Have a nice day. I hope you didn’t do anything too drastic,” she said. She reached out with a long finger. Then the green call button flashed over the screen and she was gone.
I reached up to my eyes and my fingers came away wet. I hadn’t realized I was crying. I felt numb, and then I felt something spreading through me, rage.
“Mom, they can undo it, right?” I said quietly. “They can give me back the things that they took away?”
“Sweetie,” she said. I pushed away from her, scuttling to the corner of the couch where I could sit alone.
“Sweetie,” she said again. I felt her arm around me and I tried to pull away. My fists clenched.
“Sweetie, it’s just not possible,” she said.
“You’re lying! You always lie,” I screamed. I pushed her arm away from me and I ran upstairs, slamming the door, crying.