I saw a new side of medicine last week, the side that I would have preferred not to be on—the patient’s side.

Or, at least, by the patient’s side.

Our family was all set to go on a vacation; we were driving down to the Smoky Mountains in a nice rented minivan. The car was packed up and ready to go, and I was throwing things into my bag last-minute in the foyer. I was nearly finished when my dad hurried deliberately down the stairs.

“Can you and Paul carry Cindy out into the car? We need to go to the hospital.” I didn’t see much sign of emotion as he rushed out, but it was definitely urgent sounding.

Cindy is my eldest sister. She’s the first born of the family, born in Singapore when my parents were still in their 20’s. As she grew up, my parents realized that their child was not the same as other children, or even like my older brother, born two years later. Cindy would be very silent. She didn’t make as much noise as the typical baby would.

The proper medical term is autism. She cannot communicate, at least in terms of language. She has a few phrases which she has picked up over her childhood years, mostly parental admonitions that have, for some reason, been recorded in her mind. “Hot”, “dirty”, “don’t eat it,”, “orange”, and “don’t play with the water” are some of the words that compose her own language of communication, supplicated by body language and melodic musings to herself.

I would like to say she has the mind of a child, but the body of a 29 year-old. She shares many typical symptoms of autism. Order is the law of her land. Things are not supposed to change, and routine is the only way to get her to do something. She has a few hobbies. Often, she sits in her room and works on a jigsaw puzzle for hours at end, continuously putting pieces together seemingly by trial and error. I have never actually attempted one-thousand piece puzzles, so I don’t know how long it takes the average person to finish, but I think that she has become quite adept at these puzzles and finishes them efficiently. Probably her second greatest passion is coloring. All she needs is a good supply of markers and paper, and she will simply color a good portion of the paper with wide sweeping arcs, back and forth, one marker after another, overlaying colors without any sort of boundary. She could continue for hours while giggling.

There are many other things that Cindy enjoys doing. With almost all of these, she has some particular fancy and often becomes stubborn if you try to remove it. We are often cautious when we take her to the pool because she usually refuses to leave. She becomes ecstatic when you play or sing certain songs, mostly children’s songs or classical pieces that were sung or played over and over while growing up. She will even correct your pitch if you start in the wrong key.

At times, she will obsess about little things, often arriving in phases. Never should you ever try to take away her puzzles or markers. Since we couldn’t exactly have clothing piling up in her closet, dried up markers overflowing plastic bins, and stacks of puzzles upon puzzles, often we would have to remove them while she was out of the house, or by some shrewd con job, having her come downstairs and then sneaking up without her guessing at our intentions. 

Once, she would not allow us to throw any newspapers out and we had to use trickery pull them out from her embrace and into the recycling bin. It came to be a game sometimes; I don’t think I realized that even though it seemed like child’s play at the time, it wasn’t desirable. It is kind of like taking candy from a child. The child may cry and be distraught, but she will get over it eventually and even forget that it ever happened. Even so, these are situations you would rather avoid.

It is just boggling to think about the body that she has been dealt from the deck. Besides her autism, she has suffers from epilepsy, and she takes medication daily. Regardless, she still has seizures about once or twice a month. We can only hypothesize that they correlate somewhat to her menstrual cycle. Cindy’s arms are also riddled with various scars and kieloids. When she gets a cut, she continues to bite and pick at the scabs such that her body cannot heal its wounds properly, and ugly scars remain.

Just recently, she was diagnosed with lupus. My parents noticed a slight limping in her gait, and thought that perhaps she had sprained her ankle or something similar to that extent. But then they couldn’t figure out which leg was in pain, obviously because she couldn’t tell them, but also because it seemed as if the injured leg was switching daily. My parents took her to the hospital, and after numerous tests, she was diagnosed with lupus. It’s an autoimmune disease that causes the body to attack itself. The specific type she had appeared to be localized in her joints only, so with symptoms similar to arthritis, medication could hopefully alleviate the symptoms. Lupus that begins to attack the organs would have created a much worse scenario and outlook. 

Cindy, who used to be slightly overweight but actually quite strong (it was very hard to take anything away from her if she didn’t want you to take it), dropped from a size 14 to a size 6 in a matter of months. She lost her appetite and was visibly skinnier-- better looking, but a bit too thin and still not looking entirely healthy, and there were still worries. One medication to counter another’s side effects—it seemed like something was bound to fail.

And now, as we return to the present in the Chong household, Cindy was lying in her bed, the sheets wet around her. Cindy had a seizure the night before; we were all more or less accustomed to it, so we weren’t too worried. My dad heard her go to the bathroom, slam the door, and climb back into bed after the seizure as well. 

* * *

Seizures leave you weak and helpless. Firstly, during the seizure, there is no control over the body. This is why you put their head to one side so that their tongue and saliva will not choke them, and why Cindy has a bar to prevent her from falling off her bed. Then, when the seizure is over, she just lies there in bed, her entire body quite flaccid. Pulling her eyelids open, you can see that her eyes are just glazed over, and she is just exhausted. We try to give her medicine, and she struggles just to swallow the pill down with water, before she drops into a deep sleep.

* * *

We were supposed to leave for vacation very early that morning, but my dad had decided to let her sleep in, to get as much rest as she could, since she was obviously very exhausted. But when he went to wake her up around nine, he found that her entire right side was not moving. Drool was coming out of the right side of her mouth. Something was very, very wrong. Cindy had suffered a stroke, and it looked like her entire right side was paralyzed.

When my brother and I entered the room, Cindy was sitting on the ground. She could not get up, and her right arm hung limply by her side. The sheets were pulled off and bunched at the foot of her bed, smelling of urine. My brother and I decided that the best method of carrying would be to put each arm around our shoulders and create a sort of cradle with our other arms to support her legs. Even though she was not particularly heavy, it was a tough job because she continued to struggle. She certainly did not want to be picked up, nor carried around. It got harder as we went down the stairs, and there were times when I thought we would drop her; she struggled mightily against our efforts, and it took great balance to get her down the stairs. At the base, we had to put her down to get a better hold and more control over her body.

God, the sight made me want to cry. As soon as we put her down on the floor, she tried her hardest to get up independently. She sat up and moved her right leg over, shifting her weight on that limb in order to stand. But upon shifting her body weight onto a leg that was not even responding to her brain signals, the leg simply gave away, and she crumpled onto the cold morning floor, her leg collapsing underneath her.

The sight of this was hard. Here was my sister, who probably didn’t understand what in the world was going on. All she wanted to do was to get up and try to figure out what was going on. And yet her body wouldn’t even respond naturally. You can think, what would it be like, if, when I was 5 years old, if my right leg lost all feeling? I could see she was agitated and frustrated, most of all, helpless—and yet it seemed there was nothing I could do but bring her over to the car, trying to be emotionally stoic, keeping my composure and thoughts in check.

The path outside the house and into the car was less eventful. We placed her next to my mom in the backseat of the car, which my dad had pulled out and turned around, ready to go. My brother and I went back into the house and I tried to determine what else might be useful to bring to the hospital.

My parents and my little sister left quickly, zooming down the driveway without waiting for my brother and I—they might have been waiting for us, but either they realized that six people might not fit well into a sedan, or they left, anxious to get her to the emergency room. My brother and I grabbed our backpacks which we had already packed for the trip, thinking that we could be at the hospital for a long time. I grabbed a box of crackers at the last minute, realizing that probably no-one had yet eaten anything that morning.

We zoomed over to the hospital as fast as we could. This was definitely one of those times, I thought, where it was completely legal to speed. I remember thinking, daring any cop along the way to try to pull us over with an emergency on our hands. We reaching the outer parking lot, and figuring we couldn’t be far behind them, we zoomed past the lot and to the emergency room entrance. There we saw the car pulling away to be parked. I figured Karen, my little sister, was going to park it. Since she had never driven here before (she just got her license), we honked and followed, getting her to stop. She slowly started to turn into a parking aisle, ending up stopped just in front of the curb in an awkwardly skewed position. I got out of the car and realized my Mom was driving the car. Why didn’t she go in with my Dad and let Karen drive? I opened the car door and she stumbled out, her face full of tears. I fought hard against my heavy throat and vainly tried to be strong for her. I must be strong for those who are weak, chivalry dictates. She held me tightly and cried into my shoulder. I thought about what emotions might be swirling around in her head.

It’s my daughter, my firstborn. She is so innocent, so simple minded. She has never done anything to anyone? How can something so horrible happen to her like this? Why this, and why now? God, have mercy on her! I’m sorry that I was so annoyed at her the other day, when she was playing with my hair. She was fine then, she was happy and smiling. Her whole right side! She can’t walk. Am I going to lose her? What can I do? I can do nothing. Please let her be alright. Please let her recover. This is all a bad dream. My precious children.

I couldn’t do much. She regained her composure and went on inside. My brother watched compassionately and followed me as I drove around, looking for parking. We then hurried on inside.

It’s hard when you think about such things. To try to understand the injustices of the world, whether social or political, or even little trivial things that happen. In the big picture, we are just one family that immigrated to the United States. Just deal with the cards that life deals, right? Everyone has problems, but we tend to ask, why me?

We live a world inundated with fantasy, with watching others. Talk shows where we marvel at the depravity of another family and become content, content that we aren’t like them. Reality shows were we watch the raw emotion and unmasked personalities—mankind has got secrets and it’s scary what comes out when we look closely. But we always think that we’re different, that we’re special.

The question is, why Cindy? There are five kids in our family. We’ve spread throughout the country, to elite-branded colleges and jobs. All of us did well in school, have a good work ethic, and we even all get along extremely well, taking care of each other. Our health is nearly perfect. Two of us have perfect vision. Quite simply, we had no problems growing up. So how come Cindy sits at home and idly plays with her food? We become a dynasty of doctors while she scribbles alone in her room with stacks of paper. She’s almost like the scapegoat, the one who is sacrificed for the good of the others, like Holden Caulfield dedicated to preserving the innocence of others.

All I know is that even with all my learning and knowledge, there is unseen beauty in simplicity. Simple faith, they tell you, the faith of a child. In my thirst for knowledge, to know and understand every concept, to try to master every art and skill, sometimes I lose sight of simple living. We can all try to leave a mark on this earth; we can carve our names higher and higher on the walls. But for what end, except for your own? 

The question comes down to what matters to you most, and what you want to spend your time doing. Cindy lives a simple life. She expects very little. She neither rushes nor worries. She doesn’t need new things and wears what she’s given. As long as she gets to eat, sleep, and hold on to a few tokens, she is perfectly happy with her routine and hesitant to change. Maybe I’ve got it all wrong, and she should feel sorry for me. Perhaps I can learn a lot from people who, in the world’s eyes, have nothing to offer.