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.

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. 

Walk Day 2013

Well, it's been a few days.
I have absolutely no idea what's going on with my body. The bad taste in my mouth has completely stopped and the chest pains are slowly fading away, but now I have completely knew (or, returning) symptoms to deal with. My vision is getting more and more blurry, along with extreme fatigue, headaches, dizziness, and an increase in my unbalanced tendencies. This is making it really hard to play soccer, dance, and focus in school. I haven't let up on my treatments, so I have no idea what's causing this. I just know that I have to make it to the end of the year. I have nationals for dance come July, but other than that I'm basically open. I just have to make it through school, and then I can worry further about my health.
The walk went really well! It was yesterday (well, technically two days ago. It's 12:21) and we raised at least $28,000. If we reach 30K, we could break our all-time record! And that's saying a lot, considering we've been fundraising for thirteen years. The weather was lovely, the food was lovely. A family friend named Mark set up a PA system for the music and microphone announcements, which worked wonderfully and gave the walk a really professional feel. I also got to see Deb! Deb was my nurse at the CF clinic ever since I was diagnosed until a few months ago when she left for another job. It was really hard when she left...I can't even tell you how amazing she is at her job. She's just a remarkable woman. We got a chance to chat about Alex and Ilene and transplant and me--possibly--changing clinics soon. It was extremely refreshing.
Of course, there are going to be those people who break promises. Those people who tell you they'll come but don't. Tell you they'll donate but don't. And I've gotta say, I struggle with accepting that. I always put myself in the other person's shoes and say, "If I said I would do something, I'd do it." Some "friends" from school told me they'd come to the walk, and were then overheard today talking about how they had much better things to do on a Sunday afternoon than just walk. I don't think they get it. We're walking for a CURE. A cure that could've saved my best friend. But instead, they choose to believe that I'll be okay. That everyone with CF will always be okay. I guess I'll just have to do my best to change their minds.
I've also been having some mental and emotional break-downs lately, but that's not something I want to dive into. I talked to my mom about going back to my counselor, and she thinks it's a good idea, so that'll be taking place hopefully once school gets out. I know it'll help.
I'll upload some pictures from walk day later, since I've got mountains and mountains of homework to do now...ciao.