My fingers have been hovering over the keyboard for months.  Sometimes the pencil in my hand attempted to write anything at all regarding my experience but I was unable to. I did not feel ready and did not feel that my ability to write was adequate to fully express what was going on inside my head. What was it that I wanted to write? What was there to say? Does anyone even want to know? I am unsure if I know the answer to any of these questions, but I know I have to start somewhere. Even if saying the l-word in front of people makes me cry without warning and in turn makes me want to become one with the deepest part of the ocean along with the humpback anglerfish…maybe I’ll at least be able to write about it without shedding reckless tears.

End of June 2013

The bronze passages of Petra, molded into mysterious curves and sculptures with such graceful shades of creamy taupe to flaming crimson, painted over my wonder-filled eyes. I walked along the dusty path with my camera on my shoulders—it weighed heavily on me and my heartbeat pulsated at my temples, but I tried hard to ignore it—I could not let such things distract me from this magnificent view. A few Tylenols should do. I shook it off and marched ahead. I held my camera and looked into my viewfinder, I saw the faces of my friends who laughed and made silly poses, contrasting with the grave beauty of the scenery. I snapped away as the designated photographer of the high school graduation trip. The ironic thing about being a photographer is that there are hardly any photos of you despite the intimacy you have with the camera.

I do not know how I looked that day. I know what I was wearing—a pair of old black skinny jeans, a shirt with blue-and-white stripes with some white sneakers—all covered in dust. But I am not talking about my clothes at all. I frequently think about how my face would’ve looked that day. My endeavor to take in all the beauty of nature in my limited heart, to pick up on the wondrous expressions of my friends, and to let myself be completely enclosed in the film like moment—all jumbled up with the extreme headache and shortness of breath. What expression would I have worn to embrace that multitude of emotions?

A few hours after walking the seemingly endless path of repetitive wonder, I stood in front of a rocky mountain. It was the same color as the structures I saw before but the majesty of the height and the cluttered gravel on the steps was on a whole different dimension. In all honesty, the mountain seemed daunting. I stood like a fearful child in front of a murky and foreign cave. I wanted to take a breather at the vendor where they sold chilled sodas and peanuts. But my friends urged me to go on and, unknowingly, even I pushed myself. “When will I ever come back to Jordan to see the Petra? Am I not incredibly blessed for this opportunity? I have to go on, I have to.”

Every step lies vividly in my memory. Every single step took the densest of struggle. The lightness in my head, the heavy beating of my heart, the profuse sweating, and shooting stars in my eyes. Even though my friends helped me carry my camera, I was the last to reach the top. I do not remember much of the scenery at the peak of the mountain. I was too out of breath and too dizzy to see anything. But one of my friends told me later on that it was the most brilliantly lonesome place she had ever seen and that it almost made her cry.

The journey back to the hotel room is a hazy dream. I used all my strength to walk back as quickly as possible. All I thought about was how I wanted to lie on the cool sheets of the bed; I just wanted to take some Tylenol and go to sleep.

When I finally reached the hotel room, I threw off my shoes and I stripped off my black pants off along with my blue-and-white striped shirt. It was drowned with cold, dusty sweat and I quickly stepped into the shower. Even in the shower I kept having flashes in my eyes but thought nothing of it. Then I noticed the bruises on my body.

Mostly on my legs and arms, but some even on my back and stomach. How strange it was for bruises to appear in such places in my body. How truly strange and worrisome it was.

I. Beginning of July 2013

The bruises did not occupy my thoughts for long after that trip. I was busy getting ready for a family vacation to Italy where my sister was studying at the Bocconi University as a junior transfer student. However, my mother was concerned and decided that it would be prudent to visit a clinic before traveling to see if I was completely healthy. There is something about going to the clinic or the hospital that makes most people skittish. It might be the uncomfortably sanitized and methodical atmosphere that makes you feel like a sloppy outsider. It might be the fear of being examined so meticulously and finding things out about your body that you don’t necessarily want to know. Heck, it might be seeing other patients who make you feel uncomfortable because you do not want to be part of that community.

Whatever the reason was, I was nervous. You know when some random part of your body hurts and you search Google for some answers? Although the answers are mostly “go to the doctors,” you usually receive ridiculously extreme and unrealistic responses written by god-knows-who. I searched on Google: “I get random bruises on my body and have an extreme headache”. It gave me a myriad of search results such as aging, reduced body fat, vitamin deficiency and even diabetes. But one word stood out like a red balloon on a field of freshly fallen snow. Leukemia.

II. Beginning of July 2013

Ever held a gong right after hitting it with a mallet? My whole world shook in such a way—everything in front of my computer screen blurred—my entire focus was on that word.

I prayed to God that it would be anything but leukemia. I cried and cried which in turn made my headache unbearable, but my instinct was so strong.  Now I know exactly where this fear stemmed from, besides the fact that leukemia was known as a terminal disease (not true). When I was just a child, maybe around seven or eight, I used to watch these Korean dramas with my family. The plot always revolved around a star-crossed lover, and without fail, the frail and sickly girl protagonist died from leukemia. It was like the producers only knew about leukemia and no other illness. From being exposed to such scenarios, I was frightened. I did not want to die right after my high school graduation.

“You cannot travel.” That is what the doctor told me after looking at my blood test results at the clinic. My white blood cell count was 20 times the normal range and it was multiplying by the minute. Although no one said it out loud, my diagnosis was clear.

III. Beginning of July 2013 

Bellagio in Lombardy, Italy was the exact place that our family was about to go to. If I were healthy, we would’ve been surrounded by Lake Como, glistening in the most brilliant sapphire hue, each bounce of water shining like pearls. But the reality was far from such radiance. It was 2 am by the time I was lying on a hospital bed next to a snoring Arab woman who shared a room with me.

Two nurses came into the room and poked a needle through my arms and attached some strange-colored liquids. One of the nurses asked the other very softly what I was diagnosed with. The other nurse shot me a hasty glance and softly mouthed “leukemia”—as if she was sorry to even say it in actual words. Somehow, she made me feel worse, like it really was terminal.

My mother. My father. Their composure made my heart ache. They had to pick some necessities up from our house—like a toothbrush and some underwear. It is funny how such mundane things are still needed in bizarre, life-changing situations. I urged them to go on and as soon as they left, I started crying and begged God to not let me die so soon (I did not cry very often about this, sometimes you have to be stronger to protect the ones around you). What would they have talked about in the car? Would they have cried too? Or were they too shocked to even show emotion? Did they just scramble around the house to pick up my necessities? How would they have felt? I often feel like a criminal for causing this agony that they do not, in the least, deserve.

In the summer of 2012, I donated some blood at a blood drive. In the summer of 2013, the same doctor who took my blood gave new blood. He smiled at me and simply said, “I’ll see you again.” I nodded and smiled back on my wheelchair. I lay down on the cool vinyl of the surgery bed and I watched the red drops temporarily fixing the poison in my body. My eyelids shut tight and I got ready. I got ready for the long year I had to endure and hoped, hoped, that I would stay alive.

Mid-March 2015 

One part of my bucket list: grow old.

I never grudged anyone and asked “Why me?” with my fist up in the air. This is not because I am noble or kindhearted. It is just that it made sense in my head. Now really, think about it. Who else would it be? My hardworking sister who had one year of university left until graduation? My dad who worked non-stop for everyone in my family? My mother who created the pillars for my own existence? I was glad it was I—the only one with high pain tolerance. I was taking a gap year. A slow and painful year, sure, but there was a full stop where I was standing. It was right after graduation, right? I had a clean slate, and I was about to become a new person—quite literally.

So leukemia. That is my l-word. What is your l-word, your d-word, or your c-word? What is so crucially beautiful and excruciatingly frightening to you?

Joeun Lee’s “The L Word” won second prize in the Third Annual School of Visual Arts Writing Program Contest. Joeun is a Korean who was raised in Kuwait. She is majoring in Photography at SVA. “Photography & writing make me feel alive,” Joeun says.