Lessons from my brother’s smile
by Ian Chen
It’s 3 a.m. A sudden, sharp noise wakes me up. It’s the squeak of the oxygen tank rolling on the hardwood floor toward my brother Ty’s pitch-black room. The whole house instantly wakes up. I hear what I’ve been anticipating—the intense cry of Ty yelling from the pain of the seizure. I can hear him gasping for air. The oxygen tank arrives, and Ty is instantly hooked up to it. By this time, Ty is still spasming up, every few seconds. It’s as if he’s possessed. His whole body stiffens and tenses up. I can see that my parents’ faces become less contorted the moment Ty stops spasming up. I go back to my dark room and sit there for what feels like an eternity. Sitting criss crossed on my bed, I try making sense of the thoughts racing around my brain. I eventually drift off to sleep and in an hour or so, the whole experience replays itself again at 4:00 a.m.
“This is what a typical night would be like, repetitive seizures that puts fear and worry into everyone’s mind. But if Ty can put a smile on his face after seizures, then why shouldn’t I?”
My big brother Ty, who is 16-years-old, has a severe epilepsy disorder called Lennox Gastaut Syndrome (LGS). This disorder affects the functionality of his whole body. Ty can’t speak or write. Ty can’t do the simplest tasks, such as eating and walking by himself. A caretaker always has to be on standby in case he falls. Ty’s seizures can also vary in strength and form. Ty can have an atypical absence, where he stares off into the distance forgetting about everything in that moment. Or Ty can have a generalized tonic-clonic seizure where his whole body freezes up and abruptly moves back and forth like he is being electrocuted. These different seizure types can happen up to 25 times a day and usually show up at night. Additionally, Ty’s seizures cause him to have behavioral issues such as slapping and headbutting people. As you can imagine, taking care of him can be like taking care of a ferocious tiger. However, Ty has taught me a variety of lessons that a tiger could never teach.
Ever since I was little, I could always hear his violent screams through our walls and doors. I felt his agony and suffering all the time, and I can only imagine what it feels like to have a seizure. Because of these experiences, I’m able to empathize with other people, such as my friends and family members. I’m able to feel the distress of my friends and be there for them.
Whenever my brother has a temper tantrum, I would always feel his anger and frustration. So, to quell his burning anger, I would sit next to him to hold his hand to let him know that I’m there for him. I would feel the warmth of his fingertips the moment I reached for his hand. The warmth emulated through our hands like a small bond between us, and in that moment, he would stare into my eyes. He would stare into my brown colored eyes like he was searching for some kind of meaning behind this action. I would reciprocate that by looking back into his hazel brown eyes searching for the source of his anger. Every time we had that moment, it would be like the universe stopped for this one bit of brotherly bonding. This would calm him down and put a smile on his face.
“This smile taught me that there will always be a sunny day after a rainy day. If Ty is able to put a smile on his face after being enraged, then I can find positivity in anything in life.”
I still have a clear image like a printed polaroid of the last time I saw Ty’s vivid smile before leaving for boarding school. It was when I tucked him into his cozy sheets. I was just about to finish putting the blankets over him and he flashed his cheerful smile. I knew that the next day I would have to go to boarding school, and this smile lifted my mood and dried up my tears.
The prospect of not being there for Ty because of boarding school always makes me teary. I try to help at home as often as I can. Usually, every night, my dad and I would carry Ty into bed and tuck him into sleep. I also help Ty in the bathroom. All these tasks put a strain on my parents, and I feel that my job is to lighten their loads. However, now that I’ll be going away, it’ll be very difficult for my parents to care for him physically. I can only imagine what my parents, who’ve been repeatedly doing this throughout the day feel. And I know there isn’t a solution to this problem, but the reason I want to go to boarding school is to get a great education that will enable me to give back to my brother, family, and community.
“I’ve been through a lot with Ty, and we are inseparable. We are like yin and yang, always needing each other to become whole.”
In fact, I haven’t been away from my brother for more than 9 days. However, now I’ll be going off to boarding school, and I won’t be seeing Ty for the next 80 days of my life. This is the most bittersweet moment of my life. On the one hand, I would love to explore and live in my new school, but on the other, I want to stay close to my brother. I know for a fact that I’ll miss his beaming smile that always parted the dark clouds above our house. I’ll also miss his playful personality, which always made me laugh no matter what kind of day it was. Ultimately, I’ll miss my brother, Ty, who is always spreading love. And even though I’ve never heard him say any words, I know he will miss me too.
About the Author:
Ian is 14 years old and currently attends The Thacher School. When he is free, he likes to play basketball and soccer.