Let’s talk about pity. It’s almost like a first instinct to any “sad” situation where all you know how to say is “aww i’m sorry” or the harsher version of it – “that sucks.” We live in a world where we are trained to say “that sucks, i can totally relate” if someone says their life is hard. Everyone has their own unique life of hardships and how they handle their emotions, but in some situations pity can be dehumanizing and make someone feel powerless. The first week I walked into college, I told everyone I had cf – why not, it’s not something i’m ashamed of? cf has made me feel powerful, like i can conquer almost anything in a unique way. when i told everyone, i was treated like a normal, human being. i never want to be defined by “that girl with cf.” i want to be defined as Angelica because that is my name and cystic fibrosis is not a label you can place on me before thinking of my name and what actually makes me, me. but then, as i continued my rounds of somehow bringing up how i have a random vest that shakes me up and extra nebulizers and pills and giant boxes every week of new medications, i told one more person i had cf. she responded with “awww i’m sorry you have cf. but you look so healthy, so how can you have it??”

numero uno – please do not tell me you’re sorry that i have a disease i’ve dealt with for eighteen years of my life. you did not give me this disease, so why are you apologizing? never once in my life had someone apologized for me having cf, and i was so confused. am i supposed to feel sorry for myself for powering through each day? am i supposed to sit and cry in my room and wish that i never had it? cystic fibrosis has given me so much power, so many opportunities, and so many great people, and you just took it all away in one sentence. it’s almost like working your whole life to not be defined by this one portion of my life, but rather embracing it, and you’re shaming me for having it. pity is so respectful in some other situations, but pitying someone because they have a disease which they work so hard to advocate for is disrespectful, dehumanizing, and naïve.

numero dos – how can you seem to define a cf person by their looks? cystic fibrosis is virtually invisible. all cfers fight different battles. you watching “five feet apart” once does not qualify you to judge the image of a cf person. so, if i don’t carry around an oxygen tank, does that mean i can’t have cf? you cannot base the stereotypical cfer you saw in the movie to each person with cf. that is unrealistic and degrading. we cfers want to be powerful, inspirational, and capable. we do not want to be struck down by a naïve person saying we look too good to be true.

but, from this, i learned to be more understanding. not everyone is going to be a genius about cf or know half of what we have to deal with in all aspects of life. it is a very complicated disease and ranges in severity, and some people have only seen one of the worst severities. however, people need to not take one judgement from a movie and apply that to someone in a degrading manner. we are human. we are powerful cfers. we are fighting to better our own lives and others, so please, treat us like humans and not like the disease.

well it’s been a while. today “ribs” by lorde came on and brought me back to my journal writing time so I thought I’d share some growth from then to now. A lot has happened since I last wrote here. Not a lot has happened in my life, but more of what I’ve made happen. Back in my previous journals, I was angry, sad, and felt like I was falling into a black hole. I would feel the urge to cry every hour of every day and did not see any value in myself. I’d never felt more alone – these words taken from the song “ribs.” Let’s just put it this way – back then, I was not okay. Back then, I thought my happiness was dependent on my relationships with my friends and my mind convinced me I didn’t have any close relationships & I was just there going through the motions of life. Back then, I thought every word that came out of my mouth was stupid and I would never say anything valuable. Back then, I was running fueled of anger at myself and at others for no reason other than my mind telling me nothing mattered. On the cf side of things, I was going through the motions and doing all my therapy but was so sad thinking about how I couldn’t get rid of cf that I wouldn’t see any value in doing my therapy. I wasn’t focused on making myself healthy, I was only thinking about what I couldn’t do. 

Over the summer, I was just going to go through the motions, just thinking about how everything I did wouldn’t matter. I didn’t make a point to see my friends or teammates because I knew I didn’t want to be in this black hole anymore. I needed to focus on myself because I didn’t want to think that everything I did didn’t matter. So I reflected on my relationships, picked up my self help book after not reading it again for 2 years, and listened to lots of hours of a cf podcast. I changed my mindset from nothing matters to I matter if I make a point to see the value in myself – what I say, how I act, how I see others care for me. I made myself relish how my coworkers valued me, how my parents valued me, and how my friends valued me. I wasn’t a person who didn’t matter anymore, but I was a person who made themselves matter. I didn’t just do my cf therapy because I had to, but because I wanted to get healthier and to challenge myself to have a better lung function and life. I’m so thankful I took this time to pinpoint what values matter in life & I’m so excited to leave for college on Saturday knowing that I matter. 

I’m taking a break from my usual theme on here because, honestly, sometimes it’s hard making up one good and one bad. This is not about meeting in the middle, but rather writing a real, honest, and authentic journal. So here it goes~

Five Feet Apart. Six feet apart according to the rules. Infinity feet apart in reality. Never have I ever talked to someone with CF unless it was by mistake. Never have I ever even gotten close to hugging a person with CF, let alone touched them. For the people that know the most about what I go through, what we all go through, I have never interacted with them. I avoid online communication with them because we know we will never meet in person. At least if you friend someone online, you have the hopes of meeting with them someday in the future. Meet them and reach out and touch them, shake their hand, and hug them. Sorry, in my world that is denied. Something so simple — a handshake, a hug, a fistbump. Nope, nope, and nope. For the record, I like hugs and they make me happy, but not ever being able to hug the people you feel the closest to is extremely, mentally hard.

Emotions. Oh yes, everyone knows my emotions. No, I’m not all happy and smiley all the time. My emotions don’t like to come out because I force them down my throat. Everyone wonders why I force them down my throat. But if you received disappointing news at your doctor appointments every three months for eighteen years of your life, I think you would understand. People with CF understand, but I really can’t have a conversation with them in person. “Your lung functions declining, but that just what happens as you age. You have another lung infection. You got rid of your old lung infection… but another one came back. Time to get your blood drawn! Oops I can’t find your vein because they’re so tiny. Your PFTs are down. This “miracle” drug doesn’t seem to be working in the trials. The FDA won’t approve this medication for at least two more years. You have to be in a single dorm room. Your BMI is low. We have to up your dosage. You have to go back on this pill. You need to get off this pill. You have to do this nebulizer that makes you nauseous twice a day for a month… but don’t worry, just chew gum right after and you’ll be fine.” And that’s not even half of the news from a year and a half of my life. I don’t like letting my emotions out because I’m used to feeling emotional all the time. I’ve felt everything — hopeful, hopeless, sad, happy, angry, confused, lonely — all the basic emotions any person feels. I always say how I am conquering CF, because I AM. But everyday, CF is taking pieces of my optimism that I was born with. It takes my emotions out of my throat, it takes years off of my life, it takes the calmness out of running, and it takes human connections I long for. This needs to change.

1. I do not like how I will never know what it feels like to breathe a full breath of air.

I feel my version of a full breath, but i always wonder “what does an actual full breath feel like?” people say it feels like breathing out of a straw, so that’s what i believe. but, how do I even know what breathing out of a straw really feels like? if I am basically already breathing out of a straw, then what does it feel like to take a sip of lemonade or a chocolate milkshake from a straw? a tiny straw? a giant straw? even I’m confused right now. to me, it is hard to picture a straw because it is not like my throat is any smaller making it harder to breathe, and my lungs are the same size, so it can’t be the size of the tunnel the air goes through. whatever you feel when you breathe through a straw, i guess that’s what it feels like, but how can we even be sure?

2. I like breathing my version of a full breath of air.

The first point where i notice my full breath of air is when i am laughing with my best friends. the breath is so energizing, so invigorating, so rejuvenating. i notice my full breath of air when i am traveling. the fresh, new air, beautiful sites, and new feelings makes me take it all in (even if i am in apparently low quality air california). when i am at the beach, the salty air & water relaxes me and helps me breathe the fresh air. and even though i wonder what it feels like to breathe a normal breath of fresh air, i am pretty happy with my lungs trying their best. because all i have to do is pretend i can breathe like everyone else & i’ll be a-ok.

I do not like when people insinuate I am lucky to have cf.

honestly, i would rather not write about this, but this issue plagues me every day. i am not oblivious to people thinking i am lucky to have this disease. i am actually very observant. people act like it’s just another check in the box, just another reason to put on my college application, just me playing the sick card. the amount of times i have heard, “well, at least you have cf to put on your application,” or “you’re lucky you have cf to write about,” is too many to count. and if you haven’t said it to my face, i know you’ve thought it. and the truth is, it is inevitable. i do not see cf as just something to write on my college application — it is a part of me. it is not an item to impress the readers. i would never categorize cf as an “item,” just like items on a grocery list. i do not see it as an item because cf is me. it is a small piece of me that makes my day sometimes and destroys it other times. just because i have had unique cf experiences does not mean they fell in my lap. i had to work for those opportunities, i had to work in my free time, i had to inspire others, and i had to want them. and i would rather not be treated like i am so lucky to have this disease when i had to work for my experiences on my own.

I like how cf is part of my nature.

cf has been and will always be a part of my nature. it has made me mature faster, love people more, and be nicer to people. just as so many doctors have cared for me for over 17 years, they taught me how to care for my family and friends. cf taught me that there is little to complain about. i get reminded of that every time i go to my doctor’s appointments at unc and see people who need a lot more help than me. these people inspire me to be a better person. cf taught me that whatever obstacles are in my way, there is a way around them. cf taught me that with a good mindset, you can change the people’s lives around you. cf taught me to smile. yes, of course we are all going through stuff in our lives we do not want to talk about. that does not mean that you cannot smile just because your day might be going awful. like i like to say, “smile through the pain & pretend everything is okay!” because the truth is, your smile might be the only thing that brightens a person’s day.

1. I don’t like how people don’t know what it feels like.

picture this: you’re in a small glass box. you cannot escape, but you can still see the world revolving around you. you want to escape, but you know it’s sealed shut never to be opened again. that’s what cf feels like, except cf is the person, and your body is the glass box. I recently saw “the upside” and could relate to the quadriplegic. though very different circumstances, as he is always trapped in his wheelchair, i feel like cf is trapped inside of me. no matter how much physical therapy he completes, he knows it’s not enough. and no matter how many pills and different therapies I do every day, it’s not enough. and the hard part is knowing it’s not enough. i don’t know what taking a deep breath of fresh air feels like, but I imagine it being better than when I do now. a breath not hindered by anything, a breath that does not make my chest pop every time i take the deepest breath i can, a breath that does not scar my lungs. and, i do not know what it feels like to have normal lungs, so i don’t know what pain i would compare it too. i always want to try out a different body one day, just once, and see what it feels like to have amazing lungs & a pancreas that actually digests my food without me having to take pills before every meal. but i can only close my eyes and envision.

2. I love all my cf experiences.

of course, I always envision myself without cf, because why would I automatically want to be set back? i just want a life without a disease, and in my dreams, cf is no match for me. i dream about going to college without living differently, being able to run until i am so old, living until i’m 114. but the hard question is this — if i could, would i change my life to where i would not have cf? probably not. yes, of course i want to live past 40. i want to live until i am older than 114. i want to not have to do therapy & take pills every day. but if i did not have cf, would i have had any amazing experiences? would i even know what cf is? would i have been able to help with the coin toss at a unc football game? would i have raised over $400,000 for the cf foundation? would i be unc kid champion? would i have been unc children’s hospital cf ambassador? most definitely not. and i am so thankful for these experiences. nothing anyone could say to me could amount to how amazing these experiences have been. the best feeling in the world is feeling powerful and empowering everyone else at the same time.

1. I don’t like how people forget I have CF.

it’s not like when I take my medicine, they ask me why I’m taking my pills — it’s a different kind of forgetting. it’s forgetting that i just don’t wake up, eat, and i’m on my way to school. there is a sort of hindrance that reminds me every day there is something else to do. i never forget i have CF. how can i forget that my median age is 40? not average age. median. and it’s like aging is a punishment. all i can think is 18 is almost half way to 40. and that is reason that i will never forget. how can i forget when someone asks, “what are you thankful for?” and i respond with “to be alive”? and then to the other aspect of forgetting — at practice. people do not understand that only a few people with CF are able to run. most people cannot run or even walk without losing their breath. and this is what frustrates me. it is like a constant belittling of this disease which bothers me. people brush it off like i only feel like it is hard to breathe at random times. wrong. i do not give up easily. but when i feel that my lungs are about to shut all my air out, or if it feels like someone is constantly standing on my chest, yes i will stop. it is easy for any average person to think, “well if this happened to me, i would be able to get through the pain.” wrong again. it is hard for the average person to envision it because they would have never felt any pain like this in their entire life, so envisioning them self overcoming it is easy. and it’s not completely forgetting i have this disease that i have a problem with, but it is forgetting the effects of it.

2. I like conquering my disease 🙂

I like celebrating the little joys i experience. i love celebrating my higher pulmonary function test scores, i love completing a run knowing my lungs are better than ever, and i love getting through the day without complaining about cf. i like knowing that i am battling through this disease while trying to live a normal life. i like knowing that i run, go to school, work, volunteer, raise money, and have a social life while battling CF 24/7. i like answering random questions my friends throw at me (especially the ones about being in the same room/school/mall as another person with cf). thank you for making me laugh. i like going to my unc hospital appointments and looking at the beautiful purple and blue ceiling while walking in constant circles in my favorite revolving door. i love walking on the skywalk and breathing fresh air while looking down at all the students hoping to be medical professionals. and, most of all, i love knowing that while helping myself, i can help everyone else conquer cf.

january 2, 2019

1. I don’t like how it makes me feel.

my cystic fibrosis is omnipresent. it does not decide to go away occasionally – I always feel it. no matter if I talk about it or not, it is always there. seemingly so simple, it is hard for people to wrap their head around this concept, even sometimes mine. I cannot get rid of it no matter how hard I envision it leaving my body. my cf cannot just walk on out of my body if I do not want it there. I have no choice but to live with it. I wish I could cough it out, I wish I could take so many pills to eradicate cf from my body, but some wishes can’t come true. it is so hard to describe what it feels like, but to me, it is like constant muck living in my chest.

   2. I like how it makes me unique.

all my life, I wanted to be ‘normal’. what is normal, anyway? normal to me is having a perfect life — no diseases, no sadness, no hardships. but, no one is normal. everyone has something that makes them unique, but I just had to realize my uniqueness a little sooner. when I was younger, I came home upset from school because I did not have the classic red pencil to mark up my errors. I had a twistable red pencil. and why was I upset that my pencil was different? because I already was not ‘normal’ and I was not getting any closer to living a normal life. every year since then, I started to embrace my seemingly unusual life. and now, I am loving my unique life.