Watch this before you read: https://www.youtube.com/watch?v=5cJ7MT1RTqs
There are very few things I hate more than my research paper, and one of those things is the movie called Five Feet Apart.
When I first saw this trailer, I was at the movie's with my dad. As soon as the character in the movie said, "This is my life with Cystic Fibrosis", my dad and I shot uncomfortable looks at each other, and I physically recoiled. I had the same reaction to it as I do when I see someone take a huge bite out of an ice cream bar. I could feel myself blushing and cringing so hard, and I sunk down in my seat until I was basically laying down. I quickly pushed myself back up though, because this wasn't biology class, and there was no teacher giving me the look, for the entire class to see. For once, as long as I acted natural, no one else around me would think twice about me.
Truth is, Five Feet Apart is trash, and the only reason it's so popular is the same reason The Fault in Our Stars and The Theory of Everything were both so popular. Romance movies with hot actors/actresses really sell, especially if they're tragic romances. And they seem especially popular if they misrepresent what it's actually like. I'm pretty sure Stephen Hawking's wife ripped The Theory of Everything to shreds for being grossly inaccurate in a lot of ways, and from the looks of things, Five Feet Apart is gonna grossly misrepresent CF as well. So, I'm gonna do y'all a favor and dissect everything that's wrong with Five Feet Apart that I saw from one trailer, as well as talk briefly about what it's really like living with CF. If you don't like disgustingly graphic descriptions of nasty things and extremely politically incorrect humor, don't read this.
In the trailer, there were coughs, but they were so sad and weak compared to what I often go through. When I cough, it's never pretty, and it's almost always terrible. Thankfully, my coughs are usually dry, but they still sound like a demon dog from hell. Sometimes, I get unexpected coughing fits, usually at the most inconvenient times. Often times, those coughing fits are very wet and productive.
One time, I attended a youth group shortly after I got rid of my Pseudomonas infection the second time. I hadn't coughed anything up in awhile, and was feeling good that week, so I decided I ought to go to a youth group near my house, since I wasn't attending school at all anymore. Within five minutes of being introduced to everyone by the youth group leader, I coughed once, which turned into a series of coughs that lasted for nearly a minute, while everyone I was talking to stared at me with very concerned looks.
When I pulled back my arm, I was horrified by what I saw. I had coughed up half a lung's worth in mucus all over myself, in front of five of my peers and the youth leader, within five minutes of my first day at a new youth group. I was so mortified. I was basically on the verge of passing out. All I could do was hold my arm against my chest, smile, politely excuse myself, and then sprint down a flight of stairs and down a dark, empty hallway literally faster than Usain Bolt, to the only bathroom I knew of at the time.
There was a bathroom 20 feet away from me on the same floor, but I didn't know until after. Once I got to the bathroom, I used lots of dry paper towels to clean myself up. I ended up having to use wet paper towels which left a couple of huge wet spots on my bright red hoodie, so I just took my hoodie off and wrapped it around my waist for the rest of the night until it was time to go. I ordered an Uber as soon as bible study ended, got home, and didn't tell a soul. I just went to bed, and maybe cried myself to sleep.
I went to that youth group a few more times, but I couldn't stop thinking about what happened the first day. It just eventually got too uncomfortable for me, and I stopped going. At least no one ever mentioned it in that youth group, but I'll never forget it.
At least the coughing fit I had didn't bring me to my knees. I've had coughing fits that were so terrible, I could do nothing but fall to my hands and knees, all the while making noises that would have any pastor believe I'm possessed by Satan himself. I sound just like an angry grizzly bear sometimes, and that freaks the hell out of my own family. And if I exercise hard enough without drinking much water or hacking anything up, my spit will turn into sputum and drench my windpipe, making my breathing sound just like tiger growls. I also have pretty pronounced abs just because I cough so often. Sometimes, people with CF will cough so violently that they'll break ribs, and I've probably cracked a couple myself. I wish I was exaggerating, but that's actually the reality people with CF face everyday.
The best way to deal with me when I fall victim to a gnarly coughing fit, is to just leave me alone. I can handle it myself, and it's impossible to speak clearly when I'm hyperventilating between coughs, or my windpipe is so full of sputum that my voice sounds like something straight from the pits of hell. Just let me crawl away, and I'll come back when I'm ready. And when I am ready, do not bring it up. The best way to ruin a social relationship with me is bringing up any medical incidents I may have in front of you. You'll never see or hear from me again if your sentence starts with, "Remember that one time when (insert medical issue here)..."
Anyways...
The masks the characters are seen wearing in the trailer are useless unless you're in the middle of a dust storm. To be honest, unless you're me, I don't know why anyone with CF would go outside in that in the first place. I only do it because sometimes I just have to ride my dirtbike, and I'll only stop if the wind blows me into the ditch like it's done before. Those masks don't do anything to protect my lungs from germs. They're designed to protect my lungs from big particles in the air. But they're just a big waste of money, and I can wear a bandanna that's much cooler and easier to put on than that terrible mask. A bandanna is almost better at filtering the air I breathe in anyway. Plus, I look a lot more like myself when half of my face looks like a skull rather than a flower pattern.
When I go to the doctors, I immediately put on a surgeon's mask. At least that protects me from germs to a certain degree. I still keep to myself and let my mom press all of the elevator buttons, open all of the doors, and handle all of the paperwork in the hospital. I just stand stiffly and awkwardly with my head down, mask on, and hands in my pockets. If anyone gets too close, I'll shoot them a glare.
Also, I never get to see my doctors' or nurses' faces. They wear masks along with the yellow gowns and blue rubber gloves. Even their identification tags and stethoscopes are both covered in a sheet of plastic, so when my doctors examine me, I never come in any real contact with them or their instruments. The only thing that isn't covered in plastic that I come in contact with, are the throat culture sticks. They're two very long Q-tips designed to be shoved into the back of my throat, where my doctors rub the back of my throat for five seconds until I've gagged multiple times, before removing those godforsaken Q-tips and putting them into a test tube. From there, they'll take the tube to a lab, rub the Q-tips on a petri dish, and see what grows. That way, they can figure out what, if anything, is wrong with me. It sucks, but I'm used to it. At least I can't usually cough mucus up on demand to avoid it. That means I'm much healthier than the average CFer. I would be super surprised if anything like that ends up in Five Feet Apart.
As the movie title and story line implies, the two main characters are gonna completely ignore the "6 feet apart" rule every CFer abides by. And when CFers break the 6 foot rule, they die. It's that simple. It's ok to do it accidentally, but if that happens, generally we avoid eye contact, nod as an acknowledgement that we are a danger to ourselves and each other, and then run screaming in opposite directions. And by run, I mean we break the sound barrier. There's nothing faster than two CFers running for the nearest bottle of hand sanitizer after being exposed to anything remotely dangerous to their health. If you don't believe me, just watch what happens when I go to the hospital for a routine doctors' visit, and end up in an elevator going to the same floor as someone else in a surgeon mask.
I did notice some treatments going on in the trailer, and for the most part they're pretty accurate. My pills aren't as colorful as they appear in the trailer, I don't wear oxygen and haven't had oxygen since I was 6 years old, and I don't need to be plugged into a wall anymore when I do my vest treatment. I still need to sit down for the nebulizer treatments I do, and they're exactly the same as you see in the trailer. I'll give them that. But the vests they use in the movie are outdated now. I can actually walk around to wherever I please and still shake up the mucus in my lungs, which is absolutely amazing.
But you probably won't see that either, because remember, Five Feet Apart is supposed to be a tragic romance, not a comedic adventure like my life has honestly turned out to be, for the most part. The whole point of this movie is to get these two people to kiss at the end, and then someone's gonna die. Someone just has to die to make all of the preteens and teens in the audience bawl their eyes out. Well, except for me. If I do see this movie, I'll make a bet with my dad about who will die first, and if my character dies first, I'll yell out "Called it!" and get twenty bucks.
Before you call me a terrible person, remember that in the real world, people with CF don't date each other, or even go near each other. In the movie, it's entirely self-inflicted. There's a difference between laughing at something someone couldn't help, and laughing at something that is entirely self-inflicted and ridiculously predictable, kinda like the things the Jackass guys do for a living. I'm allowed to laugh at the characters in Five Feet Apart just as much as I'm allowed to laugh at Johnny Knoxville when he tries to hide in plain sight from an angry bull: https://www.youtube.com/watch?v=enB-g028zbM .
Dark humor is really the only way I can cope with life anymore. I've screamed and cried so many times before, now when I panic, my first response is to laugh. Of course, that's pretty inappropriate when the school gets put on lockdown or there's a tornado less than a mile away, but sometimes I just can't help it anymore. If it's my time to go, I hope I go laughing.
Five Feet Apart appears to take place in winter, meaning we'll never see anyone pass out from the heat or chug at least a liter of salt water, if not more, in record time. The very root cause of CF is the inability for cells to absorb sodium. Every cell in our bodies has a salt chamber and produces proteins to process the salt. Normal cells have straight and clear salt chambers and can digest salt just fine. My cells all have salt chambers that were basically tied in a series of constrictor knots, and for all I know, the salt chambers in my cells look like nooses under a microscope. Also, my cells can't digest sodium very well at all. Since my body can't process salt all too well, or really at all (considering my body rejects 80% of the salt I take in), summer is my least favorite season.
I've never drank alcohol in my life, except for once during communion at an old church where I was pretty much forced to. However, I'm pretty sure I know what it feels like to be drunk. When I lose too much sodium, I start to slur my speech and lose my balance, and if I don't drink anything with a ton of salt in it fairly quickly, I'll pass out. Thankfully, I don't think I've ever passed out, and if I did I don't remember.
However, I've been carried out of the sun before by helpful family members, and given all of the salt I need in the world. In the summer, I can often be found chugging down half a bottle of soy sauce while the people around me stare in awe. I don't drink, but damn it, I can still put my German and Irish genes to good use by chugging a two liter soda bottle of salt water in 10 seconds if I have to! Chances are, I'll puke in the bushes shortly after, but at least I won't die from dehydration and heat stroke. I don't think you can romanticize that part of CF. In fact, there's a lot about CF that cannot be romanticized.
The biggest thing that Five Feet Apart will avoid will be the unpleasant digestive issues that come with the worst types of CF. I'm assuming that since the characters are supposed to be 17 years old and are stuck in the hospital on a lung transplant list, they have my type of CF or something very similar, so their digestive systems must be wrecked.
On an average day, no matter what I eat, I spend a good hour in the bathroom. My digestive medication only digests so much of what I eat, especially since I currently eat 6,000 calories worth in food every single day. I added in an extra meal because I'm trying to pack on the pounds. So far, it's not exactly working, but I'm not losing weight either, and I'm still gaining a pound every month, so I think I'm doing something right. Anyways, those bathroom trips are hardly ever awesome. It's really nice to have my own bathroom in the back of the house at home, with a toilet snake in the corner just in case, right next to the trash can that doubles as a loogie bucket. No one ever seems to notice I'm in there, and no one ever bothers me if I am in there.
But, when I'm a guest in someone else's home, those bathroom trips are ten times harder than they should be. If it's not an emergency and I'm not far from home, I'll give whoever took me to the house the look, and we'll rush home. But, it's an adventure if I'm far from home or it's truly an emergency.
Much like what I did at youth group after the mucus incident, I'll run around the home and hope to God I find the bathroom before anyone notices me darting around like a squirrel on caffeine. Once I find it, I always make sure the door locks, toilet flushes, and there's toilet paper. Finally, I hope I can do everything I have to do without someone bothering me.
Well, 6/10 times, someone other than my mom realizes that I'm missing and goes looking for me. What follows tend to be the most excruciating minutes I can ever endure. It's bad enough being sick, but when someone is concerned and doesn't understand my issues, the mental pain I go through as I try my best to tell them everything is ok, is almost worse than the physical pain. A lot of people just don't seem to understand what, "I'm fine, just leave me alone." means.
So, the best way I cope with situations like this is using humor. Now, I don't joke around with the concerned person on the other side of the bathroom door, but when I'm finally done with everything, I have another funny story to share with my family about the social issues that come with CF. Also, I often use typical bathroom humor with close family and friends to describe what it's like, especially since only a very small handful of people I've known could actually relate (my chronically ill stepdad being one of them), and all but Clarke are unfortunately gone.
Whenever my little brother's siblings come down from Canada, my stepdad and I make sure to torment his kids with our newest stories. My brother's older brother, Ryder, is perfectly ok with everything and can laugh along. Hannah, my brother's older sister (who is younger than me), is much more squeamish. It's always fun to tell stories during long car rides, because Hannah will get very red in the face and shout at us to shut the hell up.
Fortunately (or unfortunately, depending on how you look at it), Hannah and Ryder have been exposed to mine and Clarke's issues for over 13 years. I've had some pretty gnarly nose bleeds and other sinus incidents while in the car with Hannah and Ryder, which always seem to happen when there is nothing but yellow note paper around.
The worst incident happened two years ago, when Clarke, me, and my little brother were on the way to get Hannah, Ryder, and Ryder's best friend from the airport. Just as we entered a massive thunderstorm, my nose just started gushing blood. I had nothing but a single piece of yellow note paper and my hoodie to clean things up, and we couldn't just stop because we were running late, and the thunderstorm delayed traffic.
In the end, I looked like I had gotten into a huge fight with a mountain lion. Blood was everywhere; on the floor, on my face, on my hands, on my clothes, on the seats, hell even on the damn ceiling! Needless to say, Hannah refused to sit next to me. So, while Ryder's friend got shotgun, poor Ryder had to sit between me and Hannah with my brother between Hannah and him. He's the tallest one in the family besides Clarke, so it was a pretty rough ride.
By then, my nose bleed was over with, and all of the blood on the seats was dry. Still, I had to sit in my bloodstained clothes with crusty blood on my face, hands, and in my hair for two and a half hours. Once we got back to Clarke's house, I immediately got in the shower, changed my clothes, and attempted (but failed) to wash out the massive bloodstains on my jeans, so I had to throw away my favorite pair of jeans. We still had a good laugh about it though, and while it really wasn't funny then, it's hilarious now.
You will definitely not find this in Five Feet Apart. Most preteen and teenage girls I know want nothing to do with gross bathroom humor or extreme amounts of blood. I only find it funny because it's really a survival mechanism. Like a lot of things, I use humor to cope with my daily, lifelong issues.
Five Feet Apart won't have that much humor because it's supposed to be a tragic romance. In this movie's eyes, CFers don't know how to have fun or laugh, unless of course it's for some cheesy romance. According to this movie, we are either obsessed with death and are depressed because of it, or we're obsessed with our treatments and are depressed because of it. Well, I'm neither depressed, obsessed with death, or obsessed with my treatments. I hate rules and schedules, I'm not afraid of death but I'm not in a hurry to die, and I haven't been truly depressed in years. Basically, I'm trying to survive, and the way I do this is by living life to the fullest, and using mostly impolite and offensive humor to make fun of my issues with people who can relate.
My humor is just as gnarly as the humor war veterans use to cope with their issues. I found that out after spending a couple days with the war veterans at the Boston conference. I inserted just a little bit of dark humor in one of my responses to a question, and the conference room erupted in laughter, especially from the war vets. That just blasted that door of the hinges, and I joked with them about everything, from fart jokes to graphic jokes about my own mortality and the harsh reality of Cystic Fibrosis and PTSD. In turn, they shared a few jokes I will definitely not repeat here, except for a beef stew joke which comes from the movie Benchwarmers: https://www.youtube.com/watch?v=0OAbGiq1yDA . The "pull my finger" joke never gets old either.
Racist, sexist, homophobic, xenophobic, ableist, bathroom, death, etc. jokes are never off the table for me, but it's always important to remember that those are simply jokes. Jokes often have truth to them, but they're just jokes regardless. Jokes aren't to be taken seriously. They make life bearable, and to be honest, dark and offensive comedy's had a huge role in saving my life. Laughter is the best medicine, and brings people closer together. Dark humor saved my relationship with my dad, and it made it much easier for me to talk about bad life experiences with the people at the Boston leadership conference.
It freaks me out to see how dark and offensive humor is often treated these days. People in Europe are literally being criminalized for dark and edgy humor, and kids here in the States are being suspended for their dark and edgy memes. This is a small, but acknowledgable reason, why I'm glad to be in online school.
However, in school, I rarely, if ever, shared some of my dark humor with my peers. I kept it to myself, and for good reason. The only times I can remember some of my humor being forced out of me, is when I volcano vomited into the classroom recycling bin in 8th grade, during an important pre-test lecture. I came back a couple days later, and named the recycling bin, the recycling bin, and more or less bragged about how absolutely astonishing that incident was. It was so sudden, and I puked so much so quickly. Food poisoning is one hell of an illness!
Also, during a Geography lesson last year in 11th grade, while we were memorizing the names and locations of Asian countries, I wrote down in my own notes, "Malaysia is split into two islands, kinda like the missing Malaysia airlines flight probably is.". It helps me to use humor when I'm memorizing stuff, because I get anxious if there's a lot for me to memorize. Humor takes away the anxiety, and makes it much easier to remember. For some reason, our teacher had everyone exchange notes with each other, and that joke spread like wildfire throughout the whole school. Thank God my teachers and most of my peers understood and appreciated my humor.
Truth is, most people I know who are like me and have seen/experienced some serious shit, have seriously screwed up senses of humor. It's a coping mechanism. You will never see that portrayed in any movie or TV show unless that movie/TV show is specifically aimed at those groups of people. Usually only one episode or movie with such incredibly dark humor will leave any normal person scarred for life. But for people like me, extremely dark humor is just how we cope with life. That's the only part of life I'm not surprised Five Feet Apart avoids, and I don't blame them either.
A lot of my humor is beyond rated R, and I only share it with people I know for sure can handle those jokes. I highly doubt Five Feet Apart's target audience will even be old enough to hear those jokes, let alone get them. In fact, people who see Five Feet Apart aren't the kind of people I'd feel comfortable even sharing some of my tamest dark jokes with. Turns out soccer moms, preteen and teenage girls often don't like dark humor and get very offended. I figured that out the hard way, even though the joke I shared was very clearly aimed at myself. I forget what the actual joke was, but I do remember it had something to do with death.
But, I have to say, Five Feet Apart at least gets Cystic Fibrosis out into the mainstream, and makes conversations easier to have. I have to give the movie credit where it's due, and this is a huge step in getting CF mainstream, because that increases funds for research, and in turn increases the chances that scientists will find a cure in my lifetime. At the moment, they're focused on longevity in the CF community rather than a cure, because if we can at least get the CF lifespan to match that of an average person's, then there will be plenty of time to find a cure to CF. If it turns out that the best way to treat/cure CF is to chug 3 liters of salt water everyday, then I'll be cured within 30 seconds of waking up in the mornings.
Five Feet Apart will definitely play a role in funding CF research, just like the ALS ice bucket challenge helped to spur on ALS research several years ago. From what I heard, that actually helped us understand a lot more about ALS than we would know had the ALS ice bucket challenge not happened. I only know this because my brother's grandma had ALS and died within two years of her diagnosis, and ever since then, Clarke has kept up with any medical news regarding ALS, as ALS could run in his family, especially since his sister has MS.
So, let's hope Five Feet Apart helps get CF cured faster, and then maybe I won't by annoyed by it so much. At the same time, I'm getting pretty f-ing sick of opening up any given social media site and getting a "Have you seen the trailer for Five Feet Apart yet?" message or comment. I swear I'm gonna block and report the next person that dares ask me that question over the internet.
Still, every gross moment in Jackass showcases my disease a lot better than Five Feet Apart ever will. Jackass is basically the disease minus the treatments, and Five Feet Apart is basically the treatments minus the disease. Cystic Fibrosis is a very nasty and often embarrassing disease, and those of us who have it just have to own it. I own CF by telling dark jokes and funny stories about my daily experiences.
Even though I'm totally comfortable telling those things, I still hate it when my disease decides to introduce me by creating another story right in front of a group of strangers. People freak out because they think I'm dying, and I freak out because it's very embarrassing and I don't like to scare people I don't know, especially with a health issue. Jump scares are great. Medical scares aren't so great.
CF makes life interesting; something Five Feet Apart will clearly fail to show. Hospital stays suck, and get very old very fast. I have a life outside of the hospital, and that's what makes my life interesting.
I almost forgot, I'm willing to bet the people in Five Feet Apart will be eating normal-sized meals with normal food. Well, for me, I rarely have a normal meal. Like I said, I currently eat six meals a day now, because I really need to gain some weight back. Today alone, I've eaten two full salmon filets (or one, foot long salmon), two bags of steamed brown rice, four slices of peanut butter toast, two bags of steamed broccoli, half a bag of baby carrots, a steak, my pronghorn heart, a few baked potatoes, and a few bananas.
I eat a ton of food, and a lot of that food, such as the pronghorn heart, is weird. Still, I love food, so it's easier for me to eat it. However, I don't expect to see anyone in Five Feet Apart eat any large meal at midnight that has anything remotely strange on it. They'll probably talk about the extra calories, but it looks like our main characters will get that stuff through a G-Tube, which is something I thankfully do not and will not have.
I don't know how to end this, so since it's supposed to snow a lot this weekend, I'll end with this: https://www.youtube.com/watch?v=JpFQbItiN4c