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The Name
This one Korean proverb “When dead, tiger leaves its skin while man leaves his name,” has been my motto and lifetime goal as long as I can remember. My childhood obsession with gaining international fame was so fiery and colossal that my parents dedicated me a room for history books and memoirs of great figures. Among those was my personal hero, Napoleon Bonaparte, a man with wits and mindset that threatened the world, although he did not own “hero” physiques. I revered him so much that “Becoming the next Napoleon,” was my goal in the naïve and ambitious kindergarten days: I wore those tight and uncomfortable eighteenth century French general uniform like clothes even on the hot and humid, 100 degrees days; in hopes of looking like him, I also slept in “Napoleon pose,” my right hand put in between pajama jacket buttons; I used to declare that I would conquer the world, even while I peed on my pants in fear of kids aiming dodge balls at me. Recently, I gained an once-in-a-lifetime opportunity to leave my name for the future and become immortal like him: I defeated something that thousands since the mankind had failed and lost their lives in their attempts. Ironically, now that such heaven bestowed opportunity is within my grasp, the only emotion that engulfs my body is nothing of gratification or exhilaration, but rather bitter discomfort.
If Confucius was still alive to this day, he would nonhesitantly entitle me “world’s worst son.” He taught this particular filial duty as supreme priority amongst all other civil obligations: ‘best way to love parents is to maintain health at all times.’ Many consider Confucius a great didact for his application of his words. Old fable accounts of his bawling and pleading his mother for forgiveness for damaging his hair and nails, act that betrayed his mother’s love. Such man would definitely consider a boy with extremely rare and mortal health conditions and inherently feeble body as nothing but “a reprobate and a miscreant.” Fostered in family deeply devoted to Confucian teachings, I can only conceive my battle against leukemia as the failure as proper son, not as my friends describe, “herculean and dauntless achievement.” Persisting, was my last means to recuperate my wounded reputation as “good son”; it was the least I could do hinder my parents’ already severely afflicted heart from scarring even more. No matter how mortal and aggressive an illness may be, situation does not allow an option to give up when one knows about parents’ secretly shedded tears in the corner of the room.
Despite how bad of a son I may be, my battle against leukemia resembles ancient epopees of heroes. My recent two and a half years was an agonizing and extremely hazardous enterprise to achieve “impossible,” beguiling the death. It was a wager on my life to alleviate the imminent death. My expected remaining life expectancy in the late 2012: seven and half months. Certainty of death: 100%. Number of doctors I met during one year period from November 2012 to September 2013: 142. Chemotherapy medications, including clinical trials, tested on my body: 21. Daily radiation sessions: 15. Daily medication pill count: 65. Six times my heart stopped and seven times I revived. Number of seizures: 7. Personal record for narcotic painkiller intake: 1600mg (25 shots through IV line). Personal record for suicidal thoughts in a day: once every twenty minutes. Number of sleepless hours due to pain: 116. I am the world’s first survivor of “death-guaranteed” blood cancer; the world’s first teenage T-cell Pro Lymphatic Leukemia (T-PLL) patient and also the very first successful bone marrow transplant patient for this illness. I am so called, “living miracle.” My sole existence is beacon of hope and antithesis of death warrant.
In recognition and celebration of my victory, the oncology community dedicated me a very special number: 204.81. Starting April 2015, any doctor would be able to identify me using this newly arriving International Statistical Classification of Diseases code (ICD 10). They are also “considering” separate classifications for pediatrics T-PLL, possibly naming it after my name, if I allow them to release my medical information. Physicians too are humans; they too are manipulated by their personal desires to acquire fame. What clinician would not want to report the first survivor of morbidity rate 100% of this rare illness that not only represents less than 2% of all leukemia patients and observed once in every decade? As an ambitious teenager myself, I understand their reasons for obsessions with my blood samples and different lab studies and their direct and blunts words of persuasions to release my medical information for the benefits of medical world. Sometimes their fetish for my treatment records is so burdensome and abominable to the point that I feel as if I am Bilbo Baggins with the ring and these America’s most prospering and renowned physicians are possessed by spirits of Gollum. Imagine rejecting offerings of ten doctors then replying back same words of refusals to twenty some more emails. Among all those other honorable and stupendous that could be named after people, who would want to have an illness named after him? Imagine how hard my hero would laugh at me from the underworld; an arrogant kid, who claimed to become the next Napoleon Bonaparte, has an ailment, not a land or even a city, named after him! He would definitely be ashamed, not gratified, of weakling of my sort to say his name as life’s mentor.
Although I was not able to dominate half the world like my hero, I met few qualities to be on the same stage with Napoleon Bonaparte. First of all, I defeated leukemia, blood cancer. Cancer may seem too infinitesimal and pygmish in comparison to the world, but it defeated the Napoleon, who almost conquered the world. If his enemy, gastrointestinal cancer, is goomba of the cancer family, T-PLL is like King Bowser in Super Mario World; it had incredible several decades long undefeated career until I. Not only cancer defeated him, but he was subdued under its strength and let it accelerate his fall after 100 days campaign. Secondly, my accomplishment would never elicit two contrasting opinions like his. My existence will be a symbol of hope and bravery to groups of all age and ethnicity, especially among the cancer society; my story will motivate and encourage other patients and families to fight back, and no one would curse or mock my efforts to get back to my beloved family again. Unlike me, opinions on Napoleon still clash violently throughout the world; two centuries since his death and critics argue over the categorization of Napoleon: Ambitious dreamer or brutal murderer? Even in his motherland, France, many demonize him as an uncivil dictator who appropriated freedom and liberty away from his citizens. In these aspects, I might be better than him.
With such possibility of medical field using my name fast approaching, I now spend time wondering about the possible emotions that Lou Gehrig and Alois Alzheimer might have felt, after their names no longer represented their accomplishments and skills, but only diseases. What thoughts did they have witnessing the misery and pains of people suffering ailments named after them? In the future, if pediatrics T-PLL does receive new name after me and I happen to meet the patient with this illness, what would be their reactions upon seeing me? Would I be able to burden the possible grief and miseries that my name will symbolize? With such sardonic questions and thoughts in my mind, I close my eyes and sincerely pray to God that such circumstances would never happen.
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