"Words - so innocent and powerless as they are, as standing in a dictionary, how potent for good and evil they become in the hands of one who knows how to combine them." - Nathaniel Hawthorne
THE EYES OF A CHILD
They tell me I'm strong. It takes three to hold me down.
I want to go home. I want to be a child again. I want to understand how she can sit there and let this happen to me.
Sitting Indian-style on the paper-covered, padded table--bent forward with my arms crossed in front of me, my chin tucked to my chest--I can't see the tears in her eyes. I can't see her hands gripping the arms of the chair, her heart breaking for me, wishing she could stop the pain.
But she knows more than I do. She knows that if they don't do this, I'll die.
She is my mom. And I'm three-and-a-half.
I can hear her voice waking me up, but I pretend I'm still sleeping. I try not to breathe, try not to move. Mom moves around the semi-dark room, packing our things again. And then she's back to make sure I'm out of bed, to get me dressed.
While we wait to catch the shuttle van, I remember yesterday. How Mom woke me and dressed me, just like today...but yesterday I was in my own bed. How she drove us to O'Hare airport in Chicago while we listened to Neil Diamond and Kenny Rogers. How I took my medicine crushed up in vanilla ice cream before we boarded the plane. And how we got off in Memphis where the air smells different, and the people have funny accents.
I shiver when I remember our destination. In the beginning, we would just pick up our meal tickets and hotel voucher on the first day. But now...now they want us to get the easy tests done first. I don't mind the room where they take your temperature and blood pressure, and they measure how tall you are and how much you weigh. What I hate is where I have to go after they snap the blue, plastic bracelet on my wrist.
Today, I'm tired. I'm grumpy. I'm fighting. Because somehow, I think that if I try hard enough to not cooperate, Mom will just give up and take me home. My plan never works, but I still try.
Once again, we're walking past the white statue out front. Signing in with the lady at the front desk in the first waiting room. Going through the door that blocks the sounds and the smells. Recalling with each step why I don't want to be here.
The bigger waiting room is full with children and parents. It's noisy from chatter, from crying, from disembodied voices calling on the intercom. I am reminded that I am not alone. This isn't just happening to me.
After we find a vacant couch, I have plenty of time to think about what had happened last night when we were here. Last night when it was empty and quiet and scary.
From the moment the plastic bracelet had been secured to my wrist, I had stopped imagining that I was on vacation. A trap had closed upon my mind, replaying every memory I've had here, keeping me captive until I can walk out the front doors. Until I'm on the plane heading back to Chicago tonight.
Last night, we had gone down a hallway and through a set of double doors. My heart began to beat faster, it was harder to breathe, and my legs felt rubbery. I recoiled as the smells hit me. I was alone except for Mom, but I could imagine them--the other children just like me. The scared ones, the brave ones, the ones who are scared but act brave.
When the lab techs smiled--when they tried to calm me--I could only whimper in response. Even though I tried to tell myself that I was a big girl and I could do this, something in my brain didn't cooperate. Instead, panic slithered through my body, and I was unable to stop the tears in my eyes.
One of the lab techs said that my veins liked to play hide-and-seek. The other said I have white-coat syndrome. I didn't know what that was, but I didn't care. I just wanted them to go away. I begged the lady holding my arm to just do a finger stick. I could be good for one of those; they're quick. But she kept pressing at my arm. I tried to look away, but I tensed up more at the sound of paper ripping and the feeling of two wet, cool brushes against my skin--a stinky, alcohol wipe followed by the icky, brown betadine.
I hated those words and clenched my eyes, gripping Mom's hand. There came a painful sting. I screamed. Voices murmured that I was brave. But I was still crying while the lab tech withdrew tubes of blood, pulled the needle out, and put a bandage on the spot.
Today, I panic again at the sound of my name on the intercom, scooting into the corner of the couch, remembering what happens next. We pass the IV room and I press against Mom. Being in there is worse than getting an arm stick. I used to have to sit in the IV room for a long time with a needle in my hand. Mom says that's how they would put the drugs into my blood to fight the disease.
A lady meets us in the hallway, and she squats down to say hello to me. I know her. I like her. She is my assigned nurse. For a moment, I forget that I don't like the people back here. I forget, and I hug her. She lifts me up and carries me as she walks and talks with Mom. That's when I realize my mistake. I had made friends with the enemy. I am past the point of no return.
The door shuts behind us after we enter an examining room. My nurse sets me on the paper-covered, padded table. They're still talking while she checks my heartbeat, my ears, and my eyes. And then she hands Mom a gown before she leaves with a smile.
Mom helps me change, and then I sit against the wall, my arms crossed, my lower lip stuck out, trying not to cry. Watching the clock. Listening to the sounds outside the door. Praying that a miracle will happen.
But the door opens eventually, and my assigned doctor comes in to talk to Mom. I keep my eye on the door, grunting answers when they ask me questions.
Maybe this time they're just going to talk. Maybe this time they'll say that I've been in remission long enough to go to the ACT (after complete therapy) clinic. Maybe they'll even say that this is the last time--I won't have to come back again. If only...
The door opens again and more nurses come in with a rolling tray. My muscles clamp down, and I refuse to move. But I'm a child. I'm no match for them. They gently turn me sideways and sit me Indian-style on the table so that my back is exposed.
The sounds are behind me now. I can't see anything, but I can still hear their voices, the rattling of instruments, the snap of latex gloves. Warm hands untie the gown at my waist and push it aside. I'm shaking when I hear the rip of paper, smell the alcohol, and feel the two cold swabs against my lower back.
They tell me I'm strong. It takes three to hold me down.
The tears are running down my face. I'm crying for my mommy. My neck hurts, my chin tucked to my chest, my head held still against one of the nurses. My arms hurt, crossed in front of me. My legs hurt, crossed underneath me.
I hear the dreaded words and clench my teeth and my eyes.
A sharp needle--like fire against my skin--pierces into my back. I scream. I cannot move. And the pain only increases. This is my "bow and arrow," as I call it, where they remove some of my bone marrow to test it.
I hate this test more than anything else in the world. This and the one that follows.
The needle is gone, and I have a moment to breathe. My body wants to relax. But I still have some fight left in me. Another rip of paper, another sniff of alcohol, another two brushes of cold wetness against my back. The arms holding me down tighten once more.
The fire returns, and I manage to scream between sobs. I know I can't give up, even though I stand no chance of winning. This is my "spinal tap," where they first remove a small amount of spinal fluid to test it. They then inject some of the medicine directly into my spinal fluid. It hurts just as much as the "bow and arrow." Sometimes even more so because I've already been stuck once. They have to hold me extra still so the needle doesn't slip and injure me.
Finally, they remove the needle and the pain recedes a little. The arms holding me loosen, and they gently lay me down on my side on the table.
Sore. Exhausted. Weeping.
The door opens one last time, and the rattle of the retreating cart drowns out the ambiguous hospital noises mingling outside. I curl into a ball as Mom tells me that I did a good job, that I was a brave girl. She slips a Tylenol into my mouth and helps me drink water from a paper cup. And then all is silent except for my ragged breathing and sniffles.
After I calm down, Mom helps me get dressed and then takes me back to a couch in the waiting room to take a nap.
There are other kids around us. Some are crying. Some don't look sick, just like I don't anymore. We're all young. Eventually, though, we all realize why we're here. They're trying to save our lives.
The war is not won once we've reached remission. They still have to treat us to make sure we don't get sick again. And in the process, they're trying to find a cure--a way to prevent other kids from getting sick like us.
Mom wakes me when they call my name again, and we go back to talk to the doctor. I don't know that Mom is still worried. I don't realize that my test results could come back bad. That we would have to start treatment over again after all these years.
I get bored easily when we're talking to the doctor, mostly because I don't understand what they're saying. But I do know what the smile on my doctor's face--and then Mom's--means. It means that my tests are okay this time. It means that I can go home. And hopefully, someday, it will mean that I won't have to come back.
Finally, we get to go back to the first waiting room with the chairs instead of couches, windows instead of walls, smiling kids instead of crying ones. And then we're walking out the front doors, past the tall white statue, and piling into the shuttle van that will take us to the airport. To the plane that will take us home.
I sit on Mom's lap, my back numb now, my tears dried. I wave out the side window as we pull away.
They tell me I'm strong. My strength makes me fight. My strength helps me survive. My strength gives me the courage to return. To return to St. Jude and live to tell about it.
The author has been in remission from Acute Lymphocytic Leukemia (A.L.L.) since she was diagnosed in 1980. She has also been an A.C.T. alumni of St. Jude Children's Research Hospital in Memphis, Tennessee, since 1995.