“Monkey Ears” by Megan Ngo, 17
When I was a kid, I had little monkey ears. Perhaps it was because bananas were my favorite fruit and I’d eat one every morning for breakfast, or the fact that I was really into the cartoon Curious George. So obsessively immersed that I brought a stuffed animal, Curious George, for show and tell at school, when others brought memorabilia or their favorite Barbie doll. But in reality, it was my prominent uneven ears that sparked the comparison. Through my early years, I never noticed the difference until my siblings pointed it out in pictures. Or maybe it was when my classmate’s eyes would slowly gravitate towards my ear, and their eyebrows would start to scrunch in confusion. My left ear stubbornly protruded from my straight, black hair, capturing the attention of people’s eyes and piquing the innocent curiosity of educators and students.
From the moment I was born, I was different from the rest of my siblings. I was diagnosed with a rare birth defect: lymphatic malformation. My lymphatic vessels behind my left ear developed abnormally into benign clusters, which caused my left ear to protrude more out of my hair. These vessels are used to carry fluid, yet mine had blood seeping into them. Growing up, doctors always told my parents how “lucky” I was, as the majority of kids either had visible lumps on their necks or heads. The lump would swell frequently depending on my hormonal changes, potentially growing to the size of a golf ball. These flare-ups caused me to have migraines and even trouble sleeping, which disrupted my ability to function properly in school. Despite everything, I never recognized the various difficulties it would cause me when I grew up.
At 5 years old, I underwent anesthesia for the first time to reduce the lump’s size. I remember the decision being difficult for my family to make, as the surgery would only temporarily reduce the size. Doctors warned that it would most likely reappear with time, but despite that knowledge, my parents decided to go through with it. Eventually, trips to the doctor's office became a monthly part of my routine, which led to me missing school days. Kindergarten me was devastated as I had to miss my class’s Valentine's Day party due to a doctor’s appointment. I was only bummed out because I missed out on the humongous bag of candy from my classmates.
By the age of 10, MRIs were a familiar procedure to me, with their tunnel interior practically being my second home. In school, I started to subconsciously dislike having my hair in any updos, as people could potentially see the lump behind my ear. The thought of having people’s eyes on me drowned out every other rational reasoning in my head. I was paranoid that people would stare or point it out to me, questioning why my appearance was different from my peers. When the lump was worse than normal, I began to sit out from my favorite games in PE: dodgeball, capture the flag, and scatterball. The added weight from my ear made it difficult to do activities that included running because of headaches and the risk of it flaring up from being hit in the head.
At the age of 11, I found my passion for the sport of volleyball through the encouragement of my PE coach. Initially, my family was concerned for my well-being as a ball flying around at various speeds was not the ideal situation I should put myself in. Unfortunately, it was difficult to be careful in the beginning, as the lump could never be completely flat. The thought of minor hits to the head petrified me, as it could provoke a flare-up. Yet, with patience and much hesitation, I was happily able to earn a place on my school’s volleyball team. The understanding and patience of my community helped make my life a little easier every day. I began to learn not to hold myself back from activities under the guise of being cautious.
At 13 years old, the lump swelled to the largest it had ever been, exceeding the usual projected golf ball size. I vividly remember the unsleepable nights, the concerned looks on my family, and the horrid headaches that lasted almost 2 weeks. The stretching of the skin made it a purplish, bruised-like color. Ultimately, my parents took me to Texas Children’s Hospital to figure out more information on my condition, as my last major flare-up was in early elementary school. I ended up participating in the hospital’s study on lymphatic malformation, which I actually thought was super cool! I felt grateful and inspired that future generations with my condition will be able to benefit from the study I was a part of. Yet, what my family learned with lymphatic malformation is that it is constantly a waiting game; waiting for it to flare up and down. This has taught me to savor each moment and how to keep living, but it still reminds me to be cautious and attentive to my health. Additionally, it taught me an immense amount of patience with myself and with the world, as I can view this condition as something that makes me uniquely me, and I should not try to hide that. Fortunately, with lots of help and advice from my doctors, my family, and internet rabbit holes, I haven’t had a major flare-up in 4 years.
Lymphatic Malformations are considered rare, with 1 in 4,000 being diagnosed at birth or by the age of 2. To this day, I have never met someone with the same condition as me. Yet, this has never bothered me as my close friends and family never treated me any differently. They have offered me the best treatment I could ask for—the act of listening. They let me complain about the migraines and even the paranoia of it potentially flaring up again. This community of people ultimately contributed to my optimistic mindset by not downplaying my worries, which I believe is why a good support system is the most important aspect in a person with a chronic illness’s life. While I am still continuing to learn about lymphatic malformations, I hope anyone out there who has this condition knows that we’re all here for each other to learn, grow, and support each other from afar. I may have been born with a rare condition, but I’ve managed to make this life my own to enjoy wholeheartedly.