LONGER THAT EXPECTED: ADULTHOOD AFTER LIFE-THREATENING CHILDHOOD ILLNESS
A Wising Up Anthology
I. I KNOW WHAT STORY I'M LIVING
WHY I HATE BANANAS
I hardly ever think about the cancer anymore. Sometimes I dream about my bare scalp and wake up convinced that I smell latex gloves and rubbing alcohol, but then I realize it was just a dream and fall back asleep.
Every year I return to the Hematology Clinic at Children’s Hospital of Michigan in midtown Detroit. This annual pilgrimage feels like visiting a museum. It certainly doesn't feel like coming back to a place where I spent years of my childhood.
I’m classified as a “survivor,” but I find that word disputable. It’s past-tense, but I carry this experience in the present. “Surviving.”
Two months ago, I went for my tenth survivor checkup. On that day, my mom and I sat in the waiting room for four hours. My leg oscillated.
Four hours? It takes them four hours? I was frustrated until I realized my wait is better than the alternative. I was not a “patient of priority,” as I had been in the past. I guess I should feel relieved. Still, my leg kept moving.
I rolled my eyes to the right and saw a toddler in a polka-dot dress buried in her mother’s bosom. The baby’s head was lined with skimpy corn rows and dotted with patches of bare scalp. I watched her head ride the rise and fall of her mother’s breath, resembling the undulation of calm water. The girl pinched her mother’s shirt and kneaded at the fabric like a cat, drifting into sleep.
Then the mother looked at me. Our eyes met. Although I should have smiled, I averted my eyes and grabbed a random pamphlet to read.
I scanned the pamphlet and turned to the second page that read, “Survivor Statistics,” in bold letters. It was about a different kind of cancer than I had had. It narrated that people have relatively low survival chances if diagnosed before the age of one year, higher chances of survival if diagnosed between two and seven years of age, and back to low chances for the preteen and pubescent years. The statistics were represented by colored silhouettes of people, like strings of paper dolls. To represent a fraction, the last figurine had part of her face, her left shoulder, and the hem of her dress lopped off.
Just clean off. A fraction of a person.
I put the pamphlet down and returned to watching the room, taking careful note of the juxtaposition between movement and stillness. White walls and linoleum floors versus motion.
The center of action was at the far back corner of the room around the door that led into the examination and treatment facilities. A youthful nurse in pink scrubs spread her legs to shoulder width and steadied herself before she muscled it open in order to escort a grandmother and little boy inside. The door was heavy. Each entrance and exit was accompanied by a soft swishing sound, a sort of sound one releases during meditation.
“Ppshhhh,” the door whispered as a boy of around eight came through. He walked topsy-turvy and had an ethereal gaze. He almost rammed into another person, but his father gently steered him in the correct direction. He swayed back and forth. I blinked and imagined that I knew exactly what had happened to the boy. A spinal tap. Intrathecal chemotherapy.
I unconsciously started to mouth the words “morphine” and “versed”—two words I thought were one when I was a little girl, “Morphineanversed.” I jumped rope to the rhythm of that word. Morphine relaxes you, and disconnects you from the fear and pain. Versed makes you forget the procedure so you won’t dread it so much next time.
A spinal tap, or lumbar puncture, is one of the most painful procedures a patient may endure awake. It starts when you curl into a fetal position on your side. It took three people for me: a nurse, and two others to hold me down. They held me because being immobile is imperative; if a child moves too much during the procedure, the needle can damage the spine and potentially cause paralysis.
In this procedure, which I endured every other week for three years, a nurse carefully inserts a hollow needle between the vertebrae in order to suck out a carefully measured quantity of spinal fluid to be biopsied. Then she takes an identical amount of “medicine” - chemotherapy fluid - and injects it through the same needle into the spinal column.
They try to keep the volume of fluid in the spinal column constant. Doctors say patients are less likely to experience cripplingly painful headaches afterward if they keep the volume the same.
Luckily for me, every test showed the cancer had not relapsed in the brain or spine. But I still had to go through the procedure so they could insert chemo drugs. Acute Lymphocytic Leukemia patients must undergo this every two to three weeks. For me, that meant 75 times.
I was little when they started, so my mom held me down. She said it was the most primal thing she’d ever seen. She felt ripples shoot through my muscles as the needle punctured; I shivered like a dog on the table, curled up and scared.
Mama insisted every time that she be the one holding me in place. Even as I grew, she knew, given the choice, I’d rather my mother hold me than a stranger. That’s one of the greatest gifts she could give me.
I don’t remember the spinal taps; I just remember what people said about them. Benzodiazepines like Versed erase the memory of pain. They don’t give Versed to my parents, though. My mom remembers every time. Some scars don’t heal.
That eight-year-old boy had just endured the same process, I was sure of it. The boy was high on morphine, experiencing come-down, and, ironically, enjoying himself, spinning in happy and carefree circles.
The father was checking out. I took careful note of the father’s appearance that day. It’s funny, I don’t remember every feature of the boy, but the father may as well be standing before me as I write. His body was hardened by physical labor. He was white, half-bald, half-blonde and wore a leather coat with the coiled snake that symbolizes libertarianism embroidered on the back. He was a thick man.
At first I could only see his back, and I made assumptions about who he was, but when the burly workman turned around to leave I saw him hold his son’s hand and wipe a tear from the corner of his eye; and I remember that well.
Further back in the waiting room, near the box of toys for kids, there was a family of four Arab boys and their mother. They shouted to each other in a pidgin of Arabic and English. Three of the boys were circling their mother like electrons, but one lay limp, pocked up the leg from myeloid bruising. Myeloid bruising is indicative of a chronic blood cancer and is one of the last symptoms to manifest before death. It’s where the blood cells go on self-destruct.
I didn’t want to look more at that family, so I closed my eyes and waited until they called my name.
# # #
I stood. Good, I thought. I can get away from here. I can move.
A curvaceous nurse escorted my mom and me through the door into the hallway for treatment. We were given a small room with a painted mural of a blue-haired mermaid to wait in. I sat in the room for three minutes until my antsiness consumed me and I fidgeted my way to the restroom, because that was the only place I could go.
The bathroom reeked of regurgitated gastric acid. I could hear the girl hurling. The girl was a chemo patient. I could see the base of the I.V. stand in the gap between the stall door and the floor.
I listened, saddened. Her stomach must be hurting. She had probably puked up her previous couple of meals and would probably regurgitate her lunches afterward.
I didn’t need to use the bathroom. I just stood out of line looking at myself in the mirror.
I looked at my hair. It was my best feature. Tight ringlets of shimmering gold. My Aunt Nancy told me the universe gave me that color hair because I won it. I took my victory and my hair grew back the color of champions.
My eyes traveled down my body to my midriff. I observed my abdomen expand and contract, just like the chest of the mother in the waiting room. I inhaled deeply as the strong putrid smell wafted around me like an aura. Amidst the smell of vomit, I felt sick myself.
My gaze traveled down to my hips, which were strong and wide and built to bear babies, just like my mother’s and her mother’s before her. I sighed. Leukemia can be hereditary. I refuse to bear the weight my mother bore alongside me.
I was now staring at my legs. When I was in the third grade I skinned my knee while playing four square. The abrasion leached blood down my leg and made small pools on the concrete. My reaction to the wound was not to scream, nor was it to run to the nurse. My reaction was to sit there and impassively examine my injury as if it were an interesting artifact, because having cancer teaches you to be separate from your body.
The smell of vomit was beginning to make feel sick, so I started to think of bananas.
Bananas. Chemo patients have long-lasting aversions to food for years after the chemo is over. For some reason, bananas are the worst for me. Maybe it was because I ate a banana before I took my first dose of chemo, and my body associated the fruit with the gut wrenching nausea? More than six years after remission, at the smell of the fruit, I would instantaneously vomit. One time a girl named Courtney didn’t believe that I was “allergic” to bananas in fourth grade, so she chased me around with an open banana, and I puked all over her front, ha!
Really, the hair, the banana, and the unwillingness to pass on my genes are trivial complaints. None of them mean anything. Not having hair taught me that beauty comes from within. Not having babies reinforces that families come from love, not blood. With a sovereign mind I have time to nurture the academic and spiritual aspects of my being. And, almost ironically, as a cancer survivor I have more control over my own body than most.
If someone were to ask me to identify the most challenging aspect of leukemia, I would respond with the word “isolation.” Leukemia is fundamentally a cancer of the white blood cells, the key cells in the immune system, so all the time one goes through treatment the chemotherapy weakens and destroys the very cells meant to protect body from disease and infection. While the immune system is compromised, the victim can’t go to public places that pose a high risk of spreading germs—places like schools and parks and birthday parties and ball pits inside arcades.
Being separate from other kids made me introverted and, to a degree, intolerant of others. But, again, I’ve accepted it, because that time alone allowed me to feed my innate qualities without peer pressure. I learned to talk to myself and to adults, which led to my writing, which led to this story—a story about a girl who is surviving. Present tense.
I blinked and discovered that I had at some point started crying. The vomiting girl emerged from the stall. Was she ten? She cupped her hands under the faucet and rinsed out her mouth. The water in my ocular area started to recede. The girl noticed me. She stared at me with her bulbous, azure eyes. She looked away, looked back, looked away, and touched my hand.
I smiled softly and the tears came back.
I grabbed her wrist, careful to avoid the intravenous needle inserted in her cephalic vein. I felt our energy unite. Us together. It was beautiful. The fluorescent lights of where we stood faded into a pastel ether. We felt warm.
We just stared at each others hands. Hers were white and so gaunt one could see every tendon. Mine were tan and vibrant and grown. She stared at my hands in absolute awe, and I sensed she was wondering if hers would ever look like mine. She gently rubbed my knuckles and turned my hand over to examine my palm.
I knew she would survive, because she was full of life. She was so radiant she was channeling compassion and spirit and strength into me. She was projecting light like a star—as if fusion was happening in her bones. She gently rubbed my hands and turned them over like she could read my palm.
With her wrist movement, her I.V. fell out, and her puncture wound started to discharge a stream of blood. It wasn’t an emergency, it was just a puncture wound. She jerked her hands away from me so she could apply pressure. She grabbed her I.V. stand and hurried out. I again felt alone.
I was standing in a hospital bathroom, my clothes permeated with the smell of rubbing alcohol and vomit, and all I could think of was how that beautiful girl was not standing next to me anymore. Two months after this checkup, I’d find an article online about that very girl.
May she rest in peace.
# # #
I was standing in a hospital bathroom, my clothes permeated with the smell of rubbing alcohol and vomit. I grabbed the sleeve of my shirt and started to knead the fabric like a cat. I watched my abdomen move in and out. Good! I was still breathing.
I took a deep breath, past my diaphragm and into my solar plexus chakra. In and out. In and out. In and out.
I went back to the hospital room with the blue-haired mermaid. When Dr. Savason entered, he marveled at how grown I was, because he knew me personally, just like all his patients. He was stocky, hairy, and thick. When I was little and met him for the first time I said, “You’re the hairiest man I’ve ever seen.”
His Turkish accent proclaimed, “You’re all straight” and he asked me about my college experience. Our meeting lasted less than seven minutes. I was done, until next year. My mom and I got up to walk out.
“That was nice,” my mom said, “We didn’t have to stay long at all—once we got in.”
“No, we didn’t.” I agreed.
“Are you okay?”
“Mmm-hmm, just thinking,” I responded, standing at the threshold between the examination rooms and everything else.
The only thing between me and the rest of my life was that heavy metal door. I felt strong, almost warrior-like, as I pushed that barricade open and stepped outside.
I looked around the waiting room once again. Still there was the black woman and her baby in the polka-dot dress sitting in the same seat as when I had left. The girl was awake now. I made eye contact with her mother again, and this time I smiled and walked over.
“Are you in remission?” the mother asked.
“I’m past five years in remission, so I’m cured.”
The mother tucked her chin and kissed the toddler on her head. She whispered to her daughter, “You hear that, baby girl? That’s what you’ll be when you’re her age, too.”
That’s right, I thought, that’s what she’ll be.
I felt whole and complete and confident. I left the hospital grateful to be alive and proud of who I am.
And very alert for bananas.
JAMER is a sophomore at Emory University. She is double-majoring in Economics and the Arabic language.
What is one thing people misunderstand about your own experince of illness?
I didn't fully comprehend I was in danger of dying as a child, maybe because I didn’t fully understand death. My mother and father had to bear the imminence of my situation, however, and they endured life in that cloud. When people say to me, “Goodness, I’m so sorry that happened,” I feel it’s out of place. I don’t feel bad for myself because I don’t carry the burden of almost dying. I do carry the burden of being sick, and being different, but not being close to death, and that’s what I think people are expressing condolences for. If anyone deserves condolences, it’s my mother; but for me, I’m at peace with this experience.
What is a question you would like people to ask you that they rarely do?
In editing, I cut out a significant portion of my essay that had to do with the more awkward aspects of my illness.
As I said, adults around me felt a sense of imminence with my life, and therefore I was treated differently than my cousins. As I didn’t have hair, adults would affirm my beauty constantly, doted on me, spent hours telling me stories, and bought me gifts upon gifts; and my cousins did not get that. While my cousins were made to sit at the table until their plates were clean, I could say, “I don’t like salad” and the bowl would be removed because of fear of upsetting my nausea. And people hesitate to punish kids with cancer.
I tried to express this in my first draft but it broke the flow of the essay and had to be deleted. But I cut out a crucial aspect: the experience of the other children watching. My cousins felt it was unfair. One time when we were lying in bed together in the dark, Elaine, only eight, turned to me and whispered, “I wish I could have cancer like you.”
A question I would like people to ask is how cancer affected those outside myself.
What kind of misperceptions do people have about the kind of illness you had?
Leukemia is not a country on the Ivory Coast of Africa. May Tommy-from-third-grade always be remembered.
How has your understanding of your illness matured as you grew?
When I was a child I didn’t understand that I was in danger of dying, so when I reached an age where I could more aptly understand death, a wave crashed and I realized how narrowly I escaped being ripped out to sea.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
The experience of having cancer reaffirms physical forms do not define people. The aspirations, intellectuality, and dreams that come from the physically crippled aptly symbolize and challenge what it is to be human. To be human is to be free of mind. Cancer gave me one guiding principle: life is experienced in the soul.