Tears are rolling down my flushed cheeks. Sheer pain is radiating from my chest. Why? Why did this have to happen? Why did I let my friends push me into doing this? Oh, I know why: for once in my life, I want to finally fit in with all of my friends that don't have to do half of the things I have to do just to survive. I want to feel proud of myself. Confused yet? Let me back up to a few days ago.
My name is Lily Andrews, and I am seventeen years old. Ever since I was diagnosed with Marfan Syndrome at the ripe age of seven, I've had to 'wrap' myself in bubble wrap. Imagine, at the age of seven, not being able to play soccer or basketball or any other sort of contact sport. I had a very difficult time understanding then why I had to be so careful to not over-strain my body or else 'blow' up my heart. I thought they literally meant blow up, like a nuclear bomb! As I grew older, I began to understand what my condition entailed- going to the doctor instead of going to school, getting my heart checked instead of going to a dance, etc. These may seem like such minor little things to those who do not share my torment, but it's a sensitive topic for me.
Going from middle school to junior high was when I really started to get a sense of my differences from the other kids. The girls had reached their average maximum height of five foot seven inches while guys were still waiting to hit that growing stage. I, however, was close to six feet at just twelve years old. I quickly earned a nickname at that school: Skyscraper. The teasing from the other students never let up. Didn't they know that the reason I was so tall was because of a connective tissue disorder? The way my doctors explained it was that it's a lot like a rubber-band that's been stretched to its absolute limits and can't 'snap' back in place. I also had to get braces because my teeth were beyond crowded, and if that wasn't bad enough, I became near-sighted; everything distance-wise was blurry, which made it very difficult to see the whiteboard in class. I was a gawky giraffe with science-geek glasses and railroad-tracks in my mouth. It was as if I had a neon sign plastered to my face that said, " Pick on me! Pick on meeeeee!!"
The teachers thought, at this point, that they should have a 'education video morning' for the entire school about the cause and effects of Marfan Syndrome. I know now that they were trying to make the students see that it's not a light subject and that it's nothing to be teased about, but I was young and insecure, and just wanted to fit in. I was mortified, and after the film kids just whispered behind my back instead of saying it to my face. Somehow, that's worse.
The bullying and the teasing continued throughout junior high and into my high school life. High school was when I first experienced peer pressure at its best. There are only so many 'physical' activities that one with my condition can do without sticking out like a sore thumb and being subjected to further mocking- almost every activity that I really wanted to do was off-limits because of my many different risks. Why wasn't there more physical stuff that I could do for fun instead of being afraid for my life? If only I had a team sport I could play, with my friends, one where i didn't have to be so careful, where I could just be a regular kid. Let's just say my parents were not exactly thrilled at that idea- I'm not even going to try to repeat what they' said.
For my first week of high school, I had to restart the process of explaining to the teachers what my condition is and what to do if I over-strained my body and suffered complications: rush me to the hospital ASAP. I specifically had to explain this to my gym teacher, whose head was about as empty as a glass of water, minus the water. You'd think it'd be obvious that since I said that I couldn't do the contact sports that my gym teacher would just have me do something that didn't have that risk: running, tennis, badminton, wall-climbing (relaxed climbing), etc. No, he decided that I'm some kind of delicate flower and that I shouldn't do anything. I mean, nothing. He had me sit on the sidelines while the other students ran, climbed and flailed about with their badmitten rackets, all the while ignoring my pleas to participate. I quickly figured out why he decided on this path: my parents had called him. I was so embarrassed, and furious as well. Ironically, the stress from all of this probably caused me more harm, physically, then actually participating would have! They also had arranged with my teachers to make sure that I never carried anything too heavy in my backpack , so they gave me two textbooks for every class- one to keep at scroll, and the other for home. Many of my classmates were jealous, as their backpacks were incredibly heavy. Round two of bullying, here we come!
Junior year of high school was when I started to do what the other kids did. It was lunchtime and I went outside, taking shelter from the gentle spring rain under a large willow tree. I noticed that there was a small group of classmates that were smoking. I started to turn away when one of them saw me and called me over. Why did they do that? Not wanting to turn them away, I walked back to them shyly.
"H-hi, guys," I whispered, hating how weak I sounded. One of my classmates pulled out a little grey box and pulled out a single white stick and handed it to me. I put my hands up, taking a step back.
"I can't smoke, or else I'll increase the risk of developing lung damage."
They all laughed.
"Oh man, what a freak!"
"Come on, don't be a wimp! You don't do half of the stuff that everyone here do, just take it!"
They thrust the cigarette into my hands and stood back, clearly waiting for me to place the cigarette in my mouth. If I smoke this....I'll finally be one of the students here. Normal. I put it in my mouth and the guy that handed me the cigarette took out a lighter and flicked it open, a tiny fire playing on top, and placed it under the cigarette. I inhaled the smoke and nearly choked doing so.
I continued this disgusting habit for quite some time. It was nearing the end of my senior year of school, and I was smoking up to a pack a day. My 'friends' were chattering about the weather, how nice it was and how we should do something.
"I know!" exclaimed one of the girls.
"How about we play a round of soccer?" This got everyone in the group excited, except for me.
"You are not getting out of this, Skyscraper."
Of course that nickname had to come over into this school. I shook my head.
I coughed-more like hacked- and sort of kneeled over. Once I got ahold of myself, I stood back up, taking notice how not one of them asked if I was alright. I quickly just let it go as I shook my head.
"No, I really shouldn't."
"Just do it already! Or we'll just find someone else that's not afraid to play a little game of kick-ball."
I immediately gave in to their demands.
We walked out onto the soccer field, quickly deciding who was going to be playing where. I was the goal keeper. I stood under the arched net, hearing a little voice in my head that was saying, "don't do this! Don't put your life on the line for this stupid game!" If I didn't, no one would give me respect, or just see me as for who I am- even my parents don't really. Fired up, I assumed the position and readied myself for the game. Every time the ball came into my view, I'd block it or catch it easily. I was grinning from ear to ear. I am finally playing a sport! That everyone wanted me in! That I'm helping with winning! My parents are going to- The ball hit me square in the chest. I gasped and gasped and gasped for air like a fish trying to breathe out of the water. I fell to my knees, my hands on my chest and throat. I saw people out of the corner of my eye, but I could care less. What was happening?! A sickening thought struck me. My aorta has either ruptured or has torn. But how?! The ball. I wasn't paying attention and it hit me in the middle of my chest. So here I am, in pure pain, and all that my so-called 'friends' are doing is complaining that I am ruining the game for them, that I was being overly dramatic. I couldn't even form a coherent thought as I entered into the dark, faintly hearing the sirens grown closer and closer.
I wake up to a stark white room, a little beeping noise the only sound in the room. I shift a fraction, only to hiss in pain. Looking down, I notice that the dressing gown that patents wear is on backwards- I can see there is a wire that is hooked up to the heart monitor, and some other machine I don't recognize . I gently pull my top gown apart, only to drop it back in place. There is a large scar running from below my breastbone to the bottom of my chest. It's not horribly noticeable, but it still was raw from where they opened me up. Events of what happened flashed throughout my mind. I groan as the back of my head hit the pillow. Doctors come in later, with my parents in tow, their eyes red and bloodshot. The doctors inform me that I was extremely lucky that one of the students had the right state of mind to call 911 before it was too late, that if one more minute had passed, I would have bled to death. My aorta had torn from where the ball had impacted me, and they were able to insert a valve where my aorta was without taking the aorta out.
They also saw that my lungs were weakened and were at the beginning stage of emphysema.
"You will have to come in more often to get that checked as well, and you will have to use an inhaler for the rest of your life. As for your recovery, you will have to stay here for roughly ten days. After that, you can go home and recover for the next six to eight weeks, but you cannot push yourself anymore or else you'll have another aortic dissection and you might not survive the next time. Because of the aortic dissection this time, your life span has been cut down significantly, so you will have to take a much better care of yourself."
I could not respond as the doctor checked my heart rate and left the room, like he didn't just drop a huge bomb on us. I always knew that this could happen, but....I guess I just simply didn't believe it would actually happen to me. I was so tired of people seeing me as pitiful, as a walking symptom, that I went against my better judgement and did the things that I knew would harm me, to prove to everyone- including myself- that I could do what everyone else can. Because of insecurity, peer-pressure and being treated like a disabled child, I had made a decision that not only impacted me for the rest of my life, but made my present life even harder.
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