Since Coming to College . . .

. . . I've learned not to place my happiness on the shoulders of those around me.

It took hours of sleeplessness, tears, and phone calls to my mother, but I have finally realized that putting the entirety of my emotional health into someone else's hands ends up being detrimental to both parties. This habit is one which I developed halfway through high school.  The silver lining? The fact that I developed it at all was because there was a very special person in my life at the time who was willing to carry me through the peaks and troughs of 16, 17, 18, and 19. But, as Chinua Achebe wrote, "things fall apart." During that age of heavy maturing, I realized that my happiness was at the mercy of someone who wasn't me, and why would that ever be something to desire? Now, as long as I have myself, I'm okay - and I'm very thankful to the person who taught me that, however painful it was for both of us.

. . . "cystic fibrosis" is no longer abstract.

Since the fifth grade, I've been admitted to the hospital two times a year. That was my routine, and as much as recurring lung infection can "work" for a person, it worked for me. Now, after watching my health decline more significantly and more quickly during these past 11 months than it ever has before, I've come to understand why the median life expectancy of someone as mutated as me is 37-years-old. Never in my life have I been able to imagine myself as an old lady, but I've never been able to imagine myself dying young, either. When I pondered the demise of my existence, it was always fuzzy. At the hand of my freshman year of college, with its loneliness and excitement and independence and busyness, there is a port permanently in my chest. Health insurance companies are knocking on my parents' door every day to collect bills I never used to acquire. I can no longer run up a flight of stairs (though I'm working on it). My health is now at a very tricky stage, and I'm forced to face that if I let myself go, today, I'd plummet. If I ignored my pills and physical therapy, I'd plummet. If I stopped exercising, I'd plummet. If I chose to stop fighting for my life, right now, there is a very big chance that I could begin to die. This is something I'm thinking about for the first time, but now that I am, I'm choosing to win. Now I CAN imagine myself dying young, but that's the only place where that scene will play: in my imagination.

. . . sandwiches have replaced cereal as my official "lazy meal."

Milk expires quickly. I don't have time to keep buying milk.

. . . I've stopped waiting.

There's something magical about saying "When I grow up . . . " with stars in our eyes. It elicits the idea that the future is a place of more possibility, luck, and motivation. Operating with the future in mind, we - naturally, as humans - become complacent. There's always tomorrow. There's always tomorrow, tomorrow, tomorrow. But what if I don't want to grow up? What if my best friend revealed that my most sunshine-y quality is the fact that I am childlike? If I never grow up, where is my magical future where dreams are possible and motivation floods my blood? Well, I know I'm still (barely) a teenager, but I think it's here. I want to read and write and make videos and help people and spread awareness for cystic fibrosis, and I want to do those things seriously. Professionally. I'm never growing up, so I'm never going to receive a message from the universe that reads "Do it now." Why would I wait until graduation day to begin chasing my passions? To begin helping people? I wouldn't, so I'm not. And let me tell you, there are big, big things on the horizon.

I'm Back

My little feet are exhausted and I'll tell you why!
1. I've been running.
Your eyes are not deceiving you! I finished up my three-week round of IV antibiotics on Monday, and my home care nurse came that day to deaccess my port (this means she removed the needle, but the port itself will remain under my skin for the next time I get sick). Later that night, I went on my first run since the winter. I won't lie and say I went very fast, but I did go far - 40 minutes worth of jogging/walking! My lungs were hurting, as were my legs, but at one point during an inspirational song I honestly almost cried out of happiness. Kinda lame, I know, but I just felt so proud of myself. It's been scary to see my health decline over the past year, so choosing to fight for my life has renewed my sense of purpose in the world. I've gone on two runs since the first, and I think they're already starting to get easier.

2. Class is back in session.
I haven't stopped taking classes since I first moved to Ann Arbor in the fall. Although the spring term ended two weeks ago, I had to take two "Incompletes" and I am still making up assignments. But I think Zoloft (my anxiety drug) has started to work, because I haven't yet had any panic attacks about catching up; fingers crossed that it stays that way! Summer term started last week, and I'm really happy about my decision to drop one of the classes I was going to take. Just having my Introduction to Literature class on Tuesdays and Thursdays is giving me a lot of time to do extra treatments and rest, so hopefully my lungs will get back to where they need to be within the next few months.

3. I went back to work.
Tonight was my first shift back at the coffee shop since I got sick, and I was ridiculously nervous to close by myself. I was only on my second week of the job when I had to go to the hospital, so I was unsure about my ability to remember all of the drinks. It ended up going really smoothly, and I found a little surprise in the tip jar at the end of the night. :)

My lungs have been pretty junky, these post-IV days . . . I'm having trouble going to sleep and staying asleep because I'm coughing more than I usually do. Additionally, I'm waking up super early with tons of thick mucus and chest pains, which isn't the most fun. I had a clinic appointment yesterday which my mom was able to come up for, and my lung functions weren't what I wanted them to be: only 63%. That number was a bit disheartening to see after JUST having gotten out of the hospital, but it just goes to show how sick I was in the first place. I feel really dumb for waiting so long to get treatment, but it was an awful time for me to be sick and I was hoping to just get over it. Unfortunately I set myself back pretty far, so it'll take a while to regain that lung function. But that's just even more motivation for me to stick with my running! I love this life and I want more of it.

Dr. Simon said that I can start taking Orkambi! He estimated that it will take 6-8 weeks for insurance companies to figure out how much of it they're going to cover, which better be 100%, because the drug costs $250,000 a year. I can't wait for pharmacies to start stocking it so I can see if it does my lungs any good.

Here's my most recent vlog - my mom and I took the camera to the CF clinic. Subscribe, if you'd like!

Best Day EVER!

I've been in a funk - a very funky funk. But today, the first genetic therapy drug for my mutation of cystic fibrosis was approved, and I think I've broken free.

Never before have I experienced such nauseating, debilitating anxiety as I have these past two weeks. I cannot name the root of my nerves, and believe me, I wish I could. It feels impossible to fix yourself when you don't know why you're broken. But today, I felt as if I was slapped in the face by the mane of a unicorn made out of gummy bears. 

Guys . . . Orkambi is here.

We'll skip over the complicated scientific explanation of what Orkambi will do for roughly 8,500 Americans (those with the double delta F508 mutation who are over the age of 12) and get right to the good stuff. In clinical trials, patients taking Orkambi gained 3% lung function over time. This may not seem like a lot, but it is important to understand that cystic fibrosis is a progressive disease. This means that it only gets worse. Any improvement at all is, quite literally, a contradiction of the disease itself! And while some patients did not see any lung improvement, they saw a significantly slower decline. On top of that, patients in the trial had an easier time keeping weight on, which significantly aids to lung function as well.

Right now, people with CF are skydiving without parachutes - once the disease hits its breaking point (and this happens at a different age for everybody), our plummets are fast and unavoidable. Orkambi is our parachute. Orkambi can slow us down. Orkambi can save us.

Now, I won't pretend that Orkambi has worked/will work for everyone. Different people react . . . well, differently. But the results are there. The science is there. And where there is hope, there is life. Dum spiro spero. 

I just want to take this moment to thank everyone for their support. I want to thank you (yes, you!), the human who is reading this sentence. Together, we bought this drug. When the government refused to help us, we payed the scientists to do their jobs. We gritted our teeth and went door-to-door. We sold t-shirts, baked goods, and purple ribbons. We walked mile after mile, year after year, shouting to anyone who would listen that someday, CF would stand for "Cure Found." And no, this is not a cure. But it's the closest thing to a cure that any of us has ever seen, and that is something worth celebrating. 

College Essay #13890429384

You found the secret message! Hi.

Our school play was so boring, I was about ready to claw my eyes out.

After ninety minutes of misread lines and overly dramatic underclassmen, the spring production of Bullshot Crummond was proving to be almost unbearable to sit through. It’s not that I didn’t love my friends whom I was there to support--of course I did! That being said, I didn’t argue when the lights came on for intermission. 

Pulling my phone from my pocket, I tapped the screen to check Facebook, as any teenager would. I scrolled past statuses expressing anxiety for tomorrow’s chemistry test (which I probably should’ve been studying for) and gushing about newly found soulmates. Nothing new, nothing new. Scroll. Scroll.
“They say you are never given something you can’t handle . . . but losing your best frien--”

Wait . . .

I’ve never been more frustrated with shoddy wi-fi than I was at that moment. 

Sprinting from my seat in the loud auditorium to the double doors of the main entrance, I waited outside for the rest of the post to load. My heart felt as if it was melting onto my ribs. Tears fell to my screen, but I didn’t wipe them off. Maybe they would cover up what I didn’t want to face--erase it. After what was quite definitely the longest three minutes of my life, I was able to read through the post in its entirety. My knees gave out. My phone fell to the concrete.

Alex was dead.

I met Alexandria at Bronson Methodist Children’s Hospital on a rainy day in 2011. I had been admitted to the pediatric floor a week into her “tune-up,” and since we were both cystic fibrosis patients with tired lungs, we ended up resting them in adjacent rooms. 

Because we’re only contagious to each other, two people with CF shouldn’t ever be in the same room. In the hospital, they take that rule very seriously, and growing up as one of only two people in my county with the disease, I had no one to confide in. I constantly felt isolated by an invisible illness, and no one seemed to understand--but all of that changed the day my nurse’s gloved fingers slipped a green index card into my palm.

Ten digits followed by a bubbly “Text me!” unlocked the most substantial friendship I’d ever come to know. We clicked instantly. Despite the fact that Alex’s cystic fibrosis was significantly more advanced than my own, we were able to offer each other identical support. We shared an oddly high number of interests (US Women’s gymnastics, writing, Coldplay, etc.), only enhancing our obvious medical connection. Soon, we weren’t just “cysters”--we were sisters.

Alex was the kind of girl who would go above and beyond expectations. She made YouTube videos about her struggle to breathe, each reminding you to live your life for every moment--to savor every breath. The pageviews on her blog exploded exponentially, and they still climb every day, topping 18,000 total. Even after her passing, Alex continues to inspire others.

If Alex had been born with healthy lungs, she still would’ve found a way to leave her mark, believing that it isn’t a person’s situation that defines them, but rather what they do in spite of it. My life is a bit emptier without my best friend, but it’s ten times fuller than it ever was before her. I will always miss her phone calls, birthday packages, and mixed CD’s, but much like her loopy surgery videos, Alex’s words will live on: “I have cystic fibrosis, but it doesn’t--and never will--have me.”

What is College?

I haven't blogged in a while...

I'm gonna work on that.

Promise. :)

So, where to start. Since my last post, all of my attention has basically been on college applications. I won't post my number one (mainly because I don't want to jinx anything) but it's elite and super hard to get into and expensive and blahhh. But, I'm in love with it: I've visited twice, and I know with everything I have that it's the place where I would be happy. It's just stressful, because even though I take all honors and AP classes at school, my GPA really isn't that high. Missing a lot of school really takes its toll on your grades. I'm hoping that admissions counselors will be able to look past my marks and realize that I'm at least a little bright--I have an okay ACT score and I'm really proud of my essays, so we'll see what happens. I only have one more school to apply to (by Friday) and then I will have applied to four schools. Those results will be ready before Christmas, and if I don't get into any of my top four, I'll send out another batch of applications to slightly easier schools by January 1st.

Other than applications, I've been doing a lot of writing, a lot of homework, and a lot of coughing. Band is STILL GOING ON because our football team has been kicking butt, which I like as a senior but dislike as someone who's basically allergic to fall. Spending so much time in the cold and the rain has got me pretty sick, at the moment. I'm not sure if I'll schedule an appointment at the clinic tomorrow or not--the marking period just ended at school and I missed all of last week, so I really really need to get back in the classroom. Too many decisions. I wish someone would just make them for me.

All of this craziness with college and CF has just made me get really stressed, and I'm just not feeling happy. And after weighing my priorities, I've decided that after my health, my happiness should come first. Writing makes me happy. Or, at least, a little calmer. That's why I'm rededicating myself to this blog, my poems and stories, and I'm going to try to start journaling. (We'll see how that goes!) Other than that, I'm just going to pray pray PRAY that the admissions counselors at my dream school are impressed by my application. I wish they could meet me . . . it's hard to imagine that my entire being could be correctly and seamlessly transposed on a piece of paper.