When Cystic Fibrosis Left Me Crying on the Bathroom Floor
I am being treated for cystic fibrosis (CF). I have been tested multiple times and none of the known CF tests have come back positive; so that means there are two options:
1. I have an unknown mutation in my DNA that is causing CF (more and more of these are coming out).
2. My sickness is completely unknown.
Which do you think is better? And no I’m not being sarcastic, I honestly want to know.
I will be doing something simple like walking to my class when my chest tightens. I begin to go numb as I hear a raspy whistle and I realize that it is the sound of my body attempting to breathe. I stop in my tracks and try my best to cough hard enough to clear my airway. I know what is happening, yet no matter how hard I try, I have no control and panic always sets in. The rest of the world fades away as I try to will my lungs to open up. Eventually I am able to breathe and I have to go to class pretending like I was not just suffocating. At least now I know why this happens; I remember when I had no clue.
My friends always joke that I am childlike in my love for all things Disney. Ever since I was little I have been enchanted by the world Walt Disney created. Even though I had such a love for it, I had only been to Disney once and I was too young to remember it now. So, I was understandably excited for my senior trip to Disney. I am proud to say I now know the best places to find Mickey, the best rides, every first aid station, and, unfortunately what the public bathroom floor feels like.
Three months before my trip, I got sick. Originally my doctors thought it was just bronchitis. Four days after I first saw them, my dad brought me back and had to physically support me because I could not breathe. Over the next three months I was on six rounds of antibiotics, 28 days of steroids, and had to use a machine that pumped medication into my lungs every four hours. My doctors went from bronchitis, to whooping cough, to pneumonia, to an infection in my blood; they did not have an answer for me or my family.
The week before my trip I took all my medication eagerly, hoping that I would be able to go and experience all the magic I had been expecting for years. My parents were not thrilled with the idea of me leaving, but they were in constant communication with the teachers that were going on the trip with us, and they knew how much I wanted to go. The morning of our trip I was about to walk out the door when I couldn’t breathe. I dropped to my knees coughing until I got sick to my stomach. I considered not going but there was no way I was going to miss the magic of Disney.
Finally I got there and was ecstatic. I felt that no matter what was happening with my health, it did not matter as long as I got to experience the wonderful world of Disney. I spent the day trying to prove to myself and my friends that my health would not stop me from experiencing my senior trip to the fullest. When it started to get dark out I went to the first aid station for the third time that day to take my medication, but it was different. I was excited to take them; I was excited for them to make me well enough to see the castle show.
The nighttime castle display is the representation of all that is Disney to me. It takes something pretty and natural and turns it into something breath taking and magical! In one moment a regular building turns into an artistic masterpiece of light and color. I needed to see the show; I wanted proof that no matter what was happening, I could still see something so beautiful and pure. I made it to the front of the crowd, so elated that I was there. The events that transpired next seemed to happen in stages.
Stage one: The lights around the park turned off amid the sounds of awe and wonder of the spectators.
Stage two: The show starts and I can hear the excited screams.
Stage three: I open my mouth to scream with them, but I cannot breathe and drop to my knees.
Stage four: The previous beauty and excitement has turned into chaos and panic from my spot on the ground.
Stage five: Somehow I have stumbled my way to the bathroom.
Stage six: I have gotten sick to my stomach and am now lying on the floor as tears roll off my cheeks and land on the “magical” floors of the Disney bathroom. I am alone.
It seemed like I was alone for hours when it turns out it was less than two minutes. My friends realized I was gone and came looking for me. They lifted me up and tried to talk to me but I only half listened. The magic of Disney was lost. Throughout all of my health issues I had never felt alone until that night. Somehow the beauty of the show made my personal horror even worse. Everyone around me was having so much fun and I wanted more than anything to share in the excitement, yet my situation caused me to be alone even with hundreds of people beside me.
It’s possible that I may have been too idealistic before this. I believed that we, as humans, can all be together as one and that any divisions in societies are caused by ignorance and those walls will eventually be torn down. My experiences that night have caused me to question this. I had only considered separation due to things like race and gender. These differences can be seen and noticed visibly. I never realized that such extreme divisions can take place and not have anything to do with bigotry and hate.
The loneliness I felt that night had nothing to do with ignorance or lack of caring, but rather it was in essence caused simply by differences. I do not blame my friends for not being able to get through to me, they truly could not even imagine how much I needed that show and could not even guess at the rush of emotions I felt. Our world views are caused by our personal experiences, so how could they have truly understood me? I know they tried their best to understand but there is no way to put yourself in someone else’s shoes like that.
Before that night, I had no idea that a person could be so alone even while surrounded by people who love him or her. My experiences that night have made me wonder how many people I have been standing with, even talking to, yet have never known the struggles they faced. I may have even been there when they hit their rock bottom and I never even knew it. Divisions can be invisible, impossible to perceive just by looking at someone.
Since that night, I have tried to figure out why that moment meant so much to me. Yes, the castle meant the world to me, yet when I look back, the first thing I think about is the hard, cold tile pressed against my face.
The dignity I lost that night in that moment is what defines it. I shudder now when I think about just how many germs there must have been on that floor, but in that moment, it was my immediate reality. I wanted so badly to move, yet I could not. It was disgusting and degrading, but I could not will myself to get up. Hope is one of the virtues I find most important, yet for those couple minutes on the floor I seemed to have lost it. On that floor I was not the optimistic and outgoing blonde I had been known to be, instead I was completely vulnerable and bare.
I hate being vulnerable. I realize it is part of human nature but somehow I always hoped that I was above it. I strive for perfection and control, but vulnerability in my opinion was the opposite. I was mortified that my friends saw me like that, that they had to lift me up and try their best to clean me. While it was happening I felt that there was no way that I could ever be friends with these people in the same way as before. I was right, but not in the way I had originally thought. I feared that they would see me as too weak or as a changed person. All throughout high school I was known for being cheerful and for always running around to a different club or activity. Instead of seeing that put together person, my friends saw me hit rock bottom.
Luckily, this is not what they thought. Our friendships have grown stronger, they had seen me emotionally naked and had accepted me and loved me. I am no longer afraid of vulnerability. I will always be afraid of losing my dignity, but I realized that those two things are not the same. My vulnerability allowed my friends to see the real me: the girl who is afraid for her future, who is slow to ask for help but needs it, and the girl who felt alone.
After that night I stopped looking for my answers in Disney. The belief that I could find the beauty I was looking for in a castle was misplaced. Now I find it in sunsets, the kindness of my best friend when he held me while I was doing my treatment, the perseverance of my doctors who told me they would find a way to help me, and the peace I get when I am on my knees, close my eyes and pray to God. I went to Disney looking for hope that would inspire me. Anything to give me the strength to believe I could still be the person I had always wanted to be. In some ways it did give me hope. I hit my rock bottom on that trip and know I know I can only go up from there.
I try to remember this on nights when I am tired and momentarily lose my faith in medicine, God, and myself. Since my trip to Disney I have gotten my blood taken seven times, undergone surgery once, and now take five pills, four inhalants, two medications pumped into my lungs and an hour of lung therapy everyday. I have recently just begun my cystic fibrosis treatment. There is no cure for this illness, yet ironically, I have never felt as alone as I did at the most magical place in the world.
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Thinkstock Image By: Chepko