“We classify all personalities into these four simple categories,” I remember my Psychology teacher saying. “There are type A people, who are competitive and ambitious, but very prone to anger and annoyance. They are impatient and workaholics.”
Hm… I thought to myself. I tended to be a workaholic. I wondered if that was me. But then again I wasn’t the type to get annoyed easily.
“Then, there are type B people, who are easygoing and slow to anger. They can be said as the opposite of type A personalities because they are less competitive and driven. They tend to be happy with what they have.”
Okay. Definitely not me.
“There are also type C personalities. People who have this personality tend to be people-pleasers and often lonely. They also find it hard to express emotions, especially negative ones.”
Ah… That’s me.
I wish I knew how to open up to others.
Because I’m hurting.
But I am afraid.
Growing up, I always felt lonely, despite the fact that I got along with everyone in my grade.
Growing up, I always seemed to disappoint my family and relatives.
Growing up, trying to be like everyone else was stressful.
So many emotions welled up inside of me over time. Emotional baggage broke my back, dragged me down, and tired me out, but I could not shrug it off. For so long, I have wanted to let it go. Why can’t someone just simply walk by and offer to carry a bag for me, and lighten my load for just a little while.
Why can’t I find anyone to help me?
Why can’t I ask anyone to help me?
It’s too scary.
Ever since I was young, I have always lived with my older brother, Henry Lee. He was four years older than me. We were often home alone, because my parents were always out of town. They had to work long hours to provide for us. But that’s not really true. Perhaps it just felt that way. My parents weren’t always away. In fact, there was a point in time when they were always at home. Mom, Dad, Henry, and me. Like everyone else, we were an ordinary family. Although we didn’t have much of an income, we were happy, because we had each other.
Until that day.
I didn’t go to preschool because my family couldn’t afford it, but luckily public schools provided me with an education once I was ready to start kindergarten.
Ah, that’s right.
It was my first day in kindergarten.
On the first day, like any other kindergarten, we learned to color, write our names, count, and all the other basics. I had a lot of fun. I had never been exposed to so many people in one room. It made my toes jittery. My parents always joked that I was overly joyful, clumsy, never using my heels. Always on my toes. Always tripping over everything, even the flat ground.
I guess no one would have known what a horrible sign that was at the time.
It was the last class of the day: physical education, or P.E. The teacher had us gather up in the gym. She told us the rules to a game I had never heard about before: dodgeball. When she was finished, she divided us in teams. Standing on my toes, I was so excited. I couldn’t sit still.
She took out the bag full of balls and released them all. Instantly, everyone ran off, competing to see who would get one first. I ran after them as well, when suddenly I felt an odd sensation in my legs. They felt stiff and I couldn’t move very easily.
I looked up and watched everyone else in my class, running freely around.
How do they run so easily? I remember thinking to myself as I tried to move my legs up and down quicker.
Why do my legs feel so heavy?
How is everyone doing this?
I couldn’t understand.
I looked to my right to see a classmate with a smirk on his face. Looking straight at me, he held a ball in his hand and threw it towards me. The ball flew so fast that I had no time to dodge it.
The ball slammed into my stomach, and I toppled over. I grunted in pain, rubbing my waist.
“Out!” the teacher yelled loudly, signaling that I had to leave the court.
I tried to push myself off of the floor, sighing in disappointment. I had gotten out quite quickly and wanted to play longer.
I tried to get up, but it felt as though I had completely lost strength in my legs, causing me to fall backwards again.
What is this?
I kept trying to stand, but again and again, I fell back onto the floor. My breaths and heart began to accelerate in fear. What was this? What was going on? Why couldn’t I stand? I attempted to stand again, but couldn’t move my legs at all. Were they asleep? I began to punch my legs in frustration.
“Come on,” I groaned to myself. “Move.”
But no matter how many times I hit my legs, I could not rouse my legs. They remained asleep. My classmates began to look at me, as if I were an alien. I didn’t blame them. I had been sitting there for more than five minutes.
“Move!” I cried in desperation as everyone stared at me. It was embarrassing. “Move! Wake up! Stand!”
The teacher ran over to me. “Are you alright?” she asked in that soft voice that adults use to talk to crying children. She offered her hand. “Come on, let’s get off the court, okay?”
Slowly, I took her hand and she pulled me up, but once she let me go, I fell to the ground again.
It happened again and again. The school nurse was called. Although I was not in pain, the nurse began to look panicked and called the ambulance. I was confused. My legs were just asleep, right? Why was she putting up such a frightened faced?
The EMT’s carried me in a stretcher and I was immediately sent to the hospital. The doctors ran tests on me. To be honest, I don’t remember much because it just seemed like such a blur. Everything was happening too quickly. A doctor ran enzyme tests on me, searching for high levels of creatine kinase – an enzyme released by damaged muscles – in my blood. My parents arrived soon afterward.
“Has she recently been in any accidents?”
“Any history of injuries?”
“Does she trip very often?”
“Does she stand on her toes a lot?”
“Yes, but isn’t that just excitement?”
“Does she have trouble lying or sitting down?”
“Listen carefully,” the doctor said, taking a deep breath. He bit his lip, as if he were prepared to give bad news. “Your daughter…”
“What is it?” my mother asked. “What is wrong?”
“Your daughter, Taylor Lee, may have muscular dystrophy.”
As a child, I had no idea what that meant. I knew it was some kind of sickness, but I couldn’t comprehend what it really was. The doctor told my parents that he was unsure if that were truly the case and he would double check. But at the end, I really had this disease. This incurable disease that would affect me for life.
At the time, I didn’t understand how difficult this would be for me, until I found that I was not allowed to participate in any physical activities at school. I had to sit out and watch my classmates run around and play games during recess. Understandably, no one wanted to sit around and do nothing. It was just me, sitting on the bench, watching others swing on the monkey bars, play tag, run around the merry-go-round: every physical activity that I couldn’t do.
My parents would never tell me why I couldn’t play with the other kids.
And after that day in the hospital, it seemed like they would never come home, working overtime everyday.
I had to have weekly checkups to see my doctor as well. But no one would ever tell me why. When I was eight-years-old, I remember that my brother Henry and I stayed up playing a new video game called Super Smash Bros Brawl. We were addicted and played for hours, well into the night. My parents came back from work at around 1 am. Knowing that we were supposed to be asleep, Henry and I quickly shut off the game console and hid behind a curtain.
Curiously, I peeked through a crack between the curtain and my eyes widened. Mom and Dad were crying.
I was shocked. I had never seen them cry before. They always smiled when they were around me. Witnessing this vulnerable side to my parents was just so unusual and brand new for me.
“Why?” Mom cried. “Why does this have to—”
“Shush,” Dad said. “You’ll wake up the kids.”
“But Taylor,” Mom said. “I don’t want this for her.”
“I don’t either,” Dad said, hugging Mom tightly. “But we can’t do anything about it… There is no cure.”
“I can’t,” Mom cried louder. “I feel like such a failure as a parent. My child is dying, yet I can’t do a thing about it.”
Were they talking about me?
Henry immediately grabbed my hand as if he already knew. He hugged me tight, trying to make sure I didn’t cry, and covered my ears, ensuring that I couldn’t hear any more. But to be honest, I was too shocked to cry. I couldn’t believe it, but it seemed to add up. All the reasons why I couldn’t participate in simple classes like P.E. or play with the other kids during recess. All the reasons why I had to sit on the bench alone.
After my parents left the room, Henry and I crept out and quickly walked back to our bedroom. I sat on my bed, staring at the floor. Dying. Dying. That word kept repeating in my head.
“Henry?” I said.
“What is it, Taylor?” he replied calmly, as he tucked me into bed.
“Am I dying?”
I watched my brother suddenly freeze up, but he quickly shook it off and smiled at me. “You aren’t dying,” he said. “Just go to sleep, okay?”
“Don’t lie to me,” I said as tears flooded my eyes. But I did my best to hold them in. “Am I really dying, Henry?”
Henry didn’t move again. He just stood there with my blankets in his hand.
“Henry?” I said again, shaking him a little.
“Gōgō?” I said, meaning older brother in a Cantonese dialect.
Tears began to drip down his face. He bit his lip, trying to stop the tears, but to no avail. It was futile. He was already crying heavily. As if he lost his strength, he fell at my bedside, covering his face with my bedsheets, probably trying to hide his tears from me.
“I’m sorry,” he cried. “I’m so sorry, Taylor.”
“What’s wrong?” I asked, holding onto my brother’s hand tight. “Is there something wrong?”
“Stay clueless,” he cried. “Stay naive. Please, Taylor. You’ll regret it.”
“Tell me,” I said. “Henry, tell me what is wrong.”
“You can’t know,” he cried. “You absolutely can’t ever know.”
“Henry,” I said, trying my best to look as calm and composed as possible. “It’s true, isn’t it? That… I’m dying.”
Henry had always been bright. He was only twelve at the time, but he had understood my condition completely. He had researched it on his own. Reluctantly, he explained in simple terms what was happening to me.
Muscular dystrophy: the chronic disease that would progressively waste my muscles until the day when they would completely stop working.
Ah… So I really am dying.