Five Feet Apart by Rachael Lippincott, Mikki Daughtry, and Tobias Iaconis is the book adaptation of the movie dealing with three kids with cystic fibrosis. The two main characters that we read about in their point of view are Stella and Will. Stella’s friend, Poe, is there too. The whole book is romanticized for young teenage viewers and brings absolute trash awareness for the CF community. Let me explain why.
I out of my own curiosity wanted to read the book because it’s actually based on the movie! Alright, cool, that’s not bad but normally I’m a, “I wanna read the book before I see the movie to see how accurate it is”, but now this is a bigger problem: it’s based on the movie. Anyway, moving on.
I can’t do anything with my copy besides let it collect dust because I’ve written corrections in it along with my opinions. I cannot stand that this is the way the CF community is going to be remembered by. But as my best friend told me, I shouldn’t have to worry about what people think; leave them to their ignorance. Since she knows me, she knows how cystic fibrosis has affected my life and mentality and she’s not going to be fooled.
Below are going to be some quotes or references to the book that I reacted to.
242-250: B. cepacia mouth to mouth (spoiler)
So I get it, he had to save her life but he could have continued with the chest compressions and making sure he lifed her head up to clear her airways. However, since Stella was choking on water, he could have done the Heimlich maneuver and still would have been able to get her to cough/throw up the water. To my knowledge this makes sence.
Will breathed directly into her mouth. If being around him with masks wasn’t enough for her to catch B. cepacia, this should be the winning ticket. It’s direct contact! The simple fact that she got the new lungs that fast and is still a canidate for them is mind boggling because if it were me, I would have been tested to see if I had it and then get the lung transplant.
236: “He looks into my eyes, his voice serious. ‘You make me want a life I can’t have.’ I know exactly what he means, he shakes his head, his face somber. ‘That’s the scariest thing I've ever felt.’” -Will, from Stella’s perspective.
Yes, but did Will ever think about the fact he could have a life with her that’s not romantic? Couldn’t she have inspired him to live and make better of himself that way he could have? Because I know when my two friends died, it made me more aware of my care but now, I’m more aware of how I’ve neglected my medication and how I can reverse it. It’s more dedication but if you have others supporting you, the weight is shifted.
Although, I understand. I’ve meet people who I wish I could have had more time with them. I know friends that would love to meet up but because of distance, we’re forced to know the pain of not being able to be next to each other. The scariest part for me is who’s going to tell them that I died, when I do. How are they going to find out: when I don’t answer their calls or texts, or when they’re scrolling through social media? I don’t know which one hurts more because I’ve experienced both.
165: “I am afraid,” he admits, meeting my eyes. “You know what someone gets for loving me? They get to help me pay for all my care, and then they watch me die. How is that fair to anyone?” - Will
I for one can say that I agree. I’m the one who still apologizes about coughing around my close friends, hide in my seat in lecture halls and lower my head in public. The worst one? Me apologizing to my best friend and sister for if I were to cough in my sleep. THEN they both look and squint their eyes at me saying, “I don’t hear you in my sleep! I tune out your cough unless it sounds like you’re dying/ I’m deaf, I can’t hear you cough anyway!”
But it’s not fair for anyone involved in this process. I’ve learned that if anyone wants to help or contribute to you, just let them. If someone loves you, they’re going to pick up the other side of the world and help you make it go round while not making you feel like you’re a burden. I’m not obligated to take care of myself but it would certainly help in the long hall; just as my best friend (sorry, Jasmine, you’re being put on spot but for good reason, has no obligation to care or to help, she does so because she cares and wants to see me be happy and healthy. (That time we went to a concert and even though we were both beyond tired, she reminded me to take my medication and stood up while I did it. That’s unconditional support).
Now, I can’t reference this page but it’s when Poe is suffering from a collapsed lung and dies right after.
I can’t recall dying right away. The book never specifies if he’s continuously coughing so I’m going to say this was a reason to him being admitted. But when my lungs collapsed, I was sick for a week. I didn’t think anything of it. Until one day, I was coughing more than my sick cough and I couldn’t swallow anything, I was gasping for air through coughing. It’s when I got to the ER that I was coughing up blood and found out that I had a collapsed lung.
Besides, what hospital lets their patients run freely without checking up on them or having a tracker on them? That and lets them take their medication freely on their made schedule without supervision AND keeps it open in their room????
This post was supposed to be made a while ago but Gunnar Esiason retweeted my tweets with input and inspired me to continue to expand my opinions. Thank you, Gunnar.
It’s been a while since I last posted. The last thing I posted was my Elizabeth cosplay from NYCC. But now, it’s a whole new ball game.
The 2018 semester ended pretty well, considering the mental mind screw that I had towards the end. 2018 must have been the weirdest of all my years alive on this earth and I’m not expecting a repeat! (For the love of God, please don’t let there be a repeat).
As for my health, there are bumps in the road. I’ve been coughing a bit more in the last two weeks. There’s no sexy way to describe the effects of cystic fibrosis. My lungs feel like they’re expanding and constricting at the same time which just causes weird pressure to make me feel like I’m suffocating.
During this quick update, I will be linking down @therealjacksepticeye ’s livestream to donate towards Make A Wish. As I’ve said in the past, I had my wish granted by Make A Wish so anything benefiting them, I will gladly support and spread around!
Upcoming: I will be doing a post about Five Feet Apart and my opinions about it. I was completely disappointed with the book but after finding out that the book IS based on the movie (instead of the other way around), I have no hope for it. Especially for the cystic fibrosis community, there’s some accuracy but not enough to represent us as a whole. Spread awareness without romanticizing and glamorizing illness, cystic fibrosis is anything but beautiful and mistaken.
The spring semester begins on Monday, January 28th and until then wish me luck!
It’s been a while since we last caught up! What a better way than reliving post-con feels and experiences. This year, the only convention I attended was New York Comic Con. As you should know, it’s held in the Jacob K Javits Center in October.
I decided that I was going to go as Elizabeth from Bioshock Infinite. The cosplay I pulled together was perfect for the day, it was breezy but still warm enough to walk around without a jacket (lucky she has a bolero, so I was covered).
The train ride there was quite uncomfortable since I had the big skirt and took up room, however not many people looked at me. Walking to the convention center, I saw a couple of people in their cosplays but not many which was disappointing since, in previous years, there would be groups walking down. I arrived around the time that they opened their doors, by the time I was expecting to get there I thought that there would be quite a wait because the last convention I went to, I waited forty-five minutes to get in (that’s arriving before opening the doors, too)! That was my second sign that this year wasn’t going to be like previous years.
Upon walking in, the security point was quick and easy: a simple checking of the bag, walking through the scanner and scanning my badge. When I walked through, I didn’t even take a breath and look around. I had caught my cousin walking around with his friend so I decided to surprise him. He didn’t even recognize me! We decided to walk around a bit before splitting up.
At the con, I had gotten a few things like prints and stickers from Babsdraws, two t-shirts from SuperHeroStuff, the free lanyard they have every year, and two surprise theme boxes (one for me and my mom)! I was disappointed because I couldn’t find Gabriel Picolo, one of my favorite Teen Titans artists. I also had tons of people coming up to me for pictures! But I had a conversation with a couple who was expecting a baby girl, they were dressed up as Harley Quinn and the Joker. (If you were the couple and stumble across this post, all the luck to you both!)
To sum up the con briefly: I’m glad I went for the experience but would have been okay if I skipped it. Next year is a big maybe at this point but if I went with the right people, I think I would be in better hands. Will be posting actual photos in a separate post!
Of course, with any and all things, we’re going to die (eventually). But I’m just dying slightly faster than everyone else. My name is Kayla and I’m eighteen years old, I have Cystic Fibrosis.
For those that have been here and have read my posts, you already know that I have CF and are probably tired of me repeating this fact. But to those that are new, I welcome you. Cystic Fibrosis is a genetic terminal lung disease that can have other issues like CF-related diabetes and digestive problems among other things.
A brief summary about me is that I have just started college, I aim to be an author and that I make costumes to attend comic con. I’m a huge nerd so I do the whole comic book and video game thing. As a matter of fact, in October I’m dressing up as Elizabeth from Bioshock Infinite for NYCC.
Recently, I had felt very sad. And this isn’t weird because of my depression because I know for a fact that I’m a very sad person but this sadness was the sadness of death. I only ever feel this when someone is dying or I feel like I am or that maybe I want to?
Writing this, the date is September 3rd of 2018, the publishing of this will probably be later on. But moving on, I knew there was a reason; I just couldn’t name it until now.
There was a girl by the name of Claire Wineland, she was 21. Claire had passed yesterday (Sept. 2. 2018) due to a stroke that she had after receiving her lung transplant on August 26.
Pause.
This could be me one day. However, Claire was such a strong fighter. I didn’t know her but I wish I could have. I was thinking to myself yesterday after dinner, trying to get myself to finish my homework but something was wrong. I couldn’t focus.
I had been talking to myself all day as if she was dead like I had felt her go.
I was thinking about my wish, my two friends and how I wish I could speak my mind. I had two friends that had died from CF: Amanda and Charlie. I had promised Amanda that I would have written about her and tell others in a video-writing project but I couldn’t bring myself to do it. Now five years later, here it is.
Although, I never promised Charlie anything but to be there. I wish I was there more. And I’ve never incorporated anything more in my life besides my heroes than now, Charlie’s interests have been mine and I’ve been trying to execute them out for him.
These three had never got the chance to breathe through their new lungs or to be able to breathe off of oxygen. It’s scary to admit that I was able to get off mine. Back in May, I was hospitalized for the second time and I felt like I was dying. I pushed myself for two weeks, on the third week I took myself off it. We normally don’t get the chance to. (Quite frankly, I don’t want a lung transplant either).
Before I went in, Avengers: Infinity War had just come out. That Thursday, I finished my Captain America costume, shield and all. The following day was release night. That morning, I don’t know how I did it. I had to take my placement test, which I know I failed it before even taking it. I went in with a full fever, coughing up blood, not being able to breathe and tired beyond all hell then I went home and slept it off to be okay for the movie.
My sister had come with my parents to support me on the last night out. I cried so much beside my sister that she and I held each other through the whole movie. My quote was if Cap goes, I go. Spoilers, he didn’t go so I’m still here. (Terrible, I know).
Just before this, I had the chance of seeing Chris again. He was in New York for Lobby Hero. After the show, I stood out waiting to see him and get the chance to show that I was around if he remembered. I had printed out a picture of us from the Make A Wish day, I placed it just above the playbook. Chris was walking down the line and as he got to me, he looked at the picture, signed the playbook and looked up at me. He looked so shocked and happy; I was left in a speechless giggle and smile as all I can blurt out was, “Hi.”
The sparkle in his eyes made mine glisten and for the rest of the night, I was in a state of high. I had also written a note for him; I wish I could have given it to him, maybe he would have taken it and read it to know that I thanked him for everything and to update him on how life was.
Sebastian has a letter of his own because when I last saw him, Charlie had died two days before but I felt him die two days before his actual death. Chris and Sebastian have been the biggest inspiring role in my life that if they came across this, it would be amazing because then they’d know how much they’ve done for me (but maybe also for someone else. Inserting my other post about heroes here).
Now coming back to the present day, I feel like I should be more outgoing. Claire had wanted to be this public speaker to enlighten our minds and appreciate life because it’s so short. But I can’t help but be pessimistic about it. I can’t stand having CF and yet at times, I wish it was over, that I’m tired of fighting. That how am I still alive and breathing when perfectly good people deserved more than what they got! (It was supposed to be a question but then turned into a statement so I don’t know how to continue that).
Nevertheless, I was granted my life. I need to make the best of it and make it count. To Claire. To Charlie. To Amanda. I need to finish what they never could and I’d hope to make a difference. Breathe easy <3
Here are some links to their causes:
Claire
http://clairesplacefoundation.org/
https://www.facebook.com/clairesplace1/
https://www.youtube.com/watch?v=kD_Fr3VAsYM
Her Youtube: https://www.youtube.com/channel/UCTw8xGVrk4FTAJwMG6mw22w
Hello again, it’s been a while since my last update but not much has changed. I had officially started college a week ago and I think I’m actually liking it.
I had a week off before actual classes from my summer program. At the end of that I had passed everything, earned extra credits and I walked away with a t-shirt with the school name on it (thank God because these shirts are expensive to be representing). But I was also corrected.
In my last post, I had talked about how the SEEK program had been for students that were under-qualified for regular admission and such. Meanwhile, I was informed that SEEK students are held in higher regard because they are smarter than the average and the only thing that they lacked to attend college was money.
I stand corrected but I will still feel as if I’m not regulated to everyone else. Not to mention, I am different from everyone else.
I had to inform my professors that I have cystic fibrosis and it’s a bit awkward. I have to be my own advocate and make sure that they know and everyone else can understand. Surely, they probably have dismissed it and never will know what it is or know me but it counts that I addressed it.
Since it’s been so hot in New York, it’s been hard to breathe. I have to remind myself to pace my breathing and control my coughing. Even though coughing is normal to me! But I want to appear normal that way I’m not casted out as a freak in college already.
You would catch me before and after class dodging my way to the bathroom to hide in a stall where I’d muffle my coughs, catch my breath, flush (make sure it’s under the 3 minute rule of using the bathroom), wash my hands and leave. But if it’s in class when it happens; it’s a lot of yawning and drinking water.
It wouldn’t really be a yawn, I would take in air and then slowly breathe it out and have it be a constant loop. Drinking only makes it worse because then I realize if I consume too much, I’d have to use the bathroom. I don’t want to make myself more presentable than what I already have.
So then it’s fidgeting to control myself; not to freak out.
But hopefully I can grow out of this. I hope people become more open and judgement free.
So, it’s been about almost three weeks or so since my last post on heroes and purpose to be a hero. I have just started college, which is considered to be my pre-freshman year. Boy, do I have a rant for you.
College life has been told to be better than high school, but that’s just not true. I have experienced it enough to say that it’s just like high school. You are still split into groups, so instead of it being popular; you’re in a sorority/Greek life. You still find yourself being an outcast once people find your age or they stick with you and realize you’re the best that life has come by. (Because let’s face it, if you like someone it’s due to their personality, their mind. what they have to offer while receiving and you don’t care about looks but it’s an added bonus if you feel a certain way too.)
Some of the staff are super helpful! They like their job and they are down for the commitment of being said profession. Although, I’ve come across staff and professors that look down and talk as if you don’t know better, or in this case I should say I. Also, I had no problem letting them know that I knew what they were doing.
I’m in this program called SEEK, Search for Education Elevation and Knowledge, for anyone that wants a student’s point of view of how this program started and what it is now, here it is: it started for “under-valued” students that were of Hispanic, Black and Asian descent (which basically meant challenged). These kids didn’t have the right academic qualifications for admission but qualified to have special admission because there learning experience was not to criteria, didn’t have it financially, or they were “slow learners”.
I admit, I may not have had the best grades but they were there, also I didn’t see myself as slow. I know my worth and smarts but because I’m poor, I was or I’m at disadvantage. Then you have to add up the fact that I qualify for disability, which doesn’t help my case. Nowadays, you find every type of kid in the program and it has a bad reputation for being stereotyped as above yet we’re the highest in graduation rates, acceptances and grades.
Maybe it’s just the summer semester but it comes with a benefit of the doubt, I walk in with credits and get help for all of my major classes. This includes the College Now program which also allows you to have credits banked up to prevent you from taking them again. Plus I get money to help me financially on top of the federal-aid.
Now, here’s the CF part. The disability services really help if I’m ever out and need help to catch up, extra time on an exam, etc. Besides that, the school can have multiple documents stating that Cystic Fibrosis is a terminal disease that gets the disability help and I won’t get kicked out because of something I couldn’t control so they need to consult with me first before doing something permanent.
It’s hard to make friends because of the coughing but once they learn; it’s more easier and accepting. In this aspect, that’s what makes college a little bit better than high school. My health has been fluctuating but I think I’m okay, nothing but more meds can’t fix but my mental health has been off the walls. Keep in contact with both, one can destroy another! Take advantage of what your college offers because maybe in the long run it’ll pay off (plus, this is a gentle reminder for myself not to shy away from these opportunities as well).
Summary: college is nothing different; expectations should be more or less the same of yourself if you want to succeed and if not make them.
The question has been asked throughout many times in media history, more now than ever. To Captain America declining to sign the Superhero Registration Act; to deciding if Batman has the right authority. In a world were terrible crimes are being executed, where’s our heroes?
In a time and age where everything is control by what we see and hold in our hands, we barely look up and see for ourselves. Screens are controlling our lives and this seems to be our maker. There are some adults trying to make a difference by trying to get us to participate; however children are now playing the game too.
Things seem to spread faster by a push of a button and stir up a conversation; almost like how you can’t yell fire in a crowded room when there is none. But there is! The fire in our soul to make a change.
I was scrolling through Instagram, avoiding all the death and sadness on the news when I came upon a photo of an actor with a fan and his parents. The actor’s name is Sebastian Stan and he had a photo op with a fan that was struggling of the aftermaths of Cancer.
Reading what the caption said under the picture and looking back, it really made a difference. He could have been a Make A Wish kid, like I was, but this was just a regular Comic Con photo opportunity. Stan had asked the parents what could he do for the young man and he made dreams come true.
I couldn’t help but then look back at when I had met him. It was September 2015 in Utah and my wish was to meet Chris Evans. Chris was wonderful and a gentle-caring man but after we were done, standing out side the room freaking out, Sebastian walked across and waved at us.
Finding out that I was a wish kid, he wanted to meet us and if I wanted I could too. He was so calm and sweet, I wish I got to ask him more questions, he couldn’t be more humble or down-to-Earth than I thought.
So the saying you shouldn’t meet your heroes came across my brain and I cringed at it. I’ve never once had a bad experience with any of my heroes that I’ve come across and they have made a difference. The hero saves the day and carries on leaving the victim stunned to pass on the message.
I am the victim passing on the message. I want to be.
If I can cause a chain reaction of positivity; we can make the world better. I’m sharing to be a voice to someone who feels like they don’t or can’t have one. I may just be a young woman behind a screen but there are plenty of others just like me to do the same.
So where are our heroes? It’s the heroes who play heroes that reveal the heroes in ourselves. We all take inspiration from somewhere.
My name is Kayla, I’m eighteen years old and I will be entering college in ten days. I also have a genetic lung disease that is called Cystic Fibrosis.
I have a thing for writing and since it’s becoming more popular to, especially to share ideas over the internet; I figured mine could get somewhere.
snowghoul
kianamaiart
ellievsbear
gummygunk
annaxmalina
germansingergirl
andulkaphoto
