Chronicles of the Chronically Ill: Living with cystic fibrosis, breath by breath
As I sit cross-legged on the floor doing my Spanish homework my hands are vigorously shaking. Not just my hands, my whole body. I’m breathing as deeply as I am allowed with coughing fits in between. I’m not listening to music as I study, but instead the loud, yet familiar noises that come from the two machines nearby.
Cystic fibrosis, according to the Oxford Dictionary, is “a hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi, often resulting in respiratory infection.”
Cystic fibrosis is the disease I have that causes me to really suck at breathing. Twice a day, four times if I’m sick, I have to do about an hour’s worth of breathing treatments a day. I put on my purple vest that connects to two hoses the fill the vest with air and pulsates. This helps the mucus in my lungs to come out. That’s what it’s supposed to do, but usually I just sit and cough, but if I’m lucky I’ll cough the mucus out.
In the morning I take pills, in the afternoon I take pills and before bed, you guessed it, more pills. Forty pills a day keep me alive.
I look healthy on the outside, but on the inside my lungs are functioning at 37 percent.
Sometimes I walk around feeling like a badass. If a "normal" person (I use this term loosely) was to go from 100 percent lung function to 37 percent, there is a very good possibility that they would die.
On the extremely rare occasion that I meet someone who knows what CF is, they always compare it to asthma. That gets me pretty heated. Cystic fibrosis is more than just a "lung thing." This disease affects the digestive system and can also affect kidneys, liver, reproductive systems, cause joint problems and so much more.
It’s eating everything in sight, yet still losing five pounds. It’s doing four breathing treatments a day, taking all your medications, but still ending up in the hospital for a two-week stay. It’s watching your mom quit jobs and put her entire life on hold, just to manage yours.
It’s physically and mentally draining, but just like you should wake up in the morning and brush your teeth, I get up and strap on my vest without hesitation.
Why do you care? You probably don’t. College is rough. If you say you’ve never thought about dropping out and moving to a faraway island, you’re most likely lying. In college, you’re supposed to be great in school, have a job or an internship, be involved on campus, have a social life, get eight or more hours of sleep. The list goes on. Now tack on having an illness.
Some days I don’t have the energy to do anything, most likely I’m lying on my couch with a fever deciding whether to watch another episode of “Friday Night Lights” or to suck it up and start one of five projects for some class that I hate. It’s a toss-up most of the time. A lot of the time I’m wondering whether to go to class because I’m coughing my head off. I still go, but I’d be lying if I said I’m not worrying about what my classmates will think of me when I’m coughing every five minutes.
I try my best to hold back the coughs and deal with the horrified looks from my fellow peers, but sometimes it’s not enough. Sometimes I wish they just knew.
I didn’t write this for attention, hell, I even told the editor to make it anonymous. I wrote it for awareness. Not for the attention of myself, but for cystic fibrosis. I wrote it for those who might be going through something in life, as we all are, and to know you’re not alone.
The point is, everyone has a story. Everyone has something wrong with them or something happening in their life. Just because you might have diabetes or asthma doesn’t make you special, just like me having cystic fibrosis doesn’t make me special. You never truly know what’s going on in someone’s life.
The guy that took the elevator just to get to the second floor might have a lung disease and could get easily out of breath by walking up a flight of stairs. The girl that doesn’t show up for class might be stuck in bed because of depression, not a hangover.
Moral of the story: try your hardest not to judge others. As humans, we are so quick to judge, when really, we don’t have the slightest clue as to what’s going on in someone else’s life.
And if you’re feeling a little generous, head over to www.cff.org.