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. 

S.O.O.

I was thinking of something today. Okay. So, I feel like everyone has a place, or a time, or an activity, or something-or-other where their soul finds peace. A something-or-other where it finally seems like everything is going to be okay. And then I thought to myself, "You know, Hannah, I bet consciously acknowledging those something-or-others is a really good way to find happiness." And you know what? I agree with myself. So, here I go.

My Something-Or-Others

1. Dancing: Okay, so this is typical. Any dancer would say this. But there's just some indescribable feeling that goes along to moving your body to a piece of music and knowing that other people are entertained by it. It's also cool to know that it used to be a huge medium for storytelling. Tap dancing really gives me that feeling more than any other style of dance, because I don't feel self-conscious when I tap. Honestly, when I dance, I completely forget about my real life. About all the problems and all the worries (unless it's a lyrical piece . . . in that case, I like to draw from my experiences to get true emotion on stage).
2. Writing: Writing gives me basically the opposite feeling as dancing does. Oftentimes, writing is a very painful and difficult process for me. Digging up everything that I pretend isn't there, the words that flow from my fingertips force me to deal with the crap I avoid. Poetry, in particular, really helps me deal with memories that are still raw. So, while writing is actually the time my soul feels the heaviest, it's also the time my soul feels the freest. Many people say that there is peace in ignorance, but I think that knowing is peaceful, because it forces you to find a solution. Or at least to stop pretending.
3. Sleeping: I'm not sure that this one needs an explanation, but the future usually seems to become less scary after a good nap.
4. Walking: I really like taking walks. And through making this list, I've realized that I don't take enough of them. Night walks are great, because the air just tastes so fresh and the stars just seem so bright, but I'm actually kinda scared of the dark. Maybe, if I could just wake earlier, I could take pretty morning walks. They're so soothing. (Running, on the other hand, is my bane.)
5. The minutes after a long cough attack: While hacking my lungs out with a reddened face isn't the most comfortable thing in the world, my lungs always feel sooooo good after I've spent a good ten minutes punishing them with giant coughs. Unlike in my usual state, this something-or-other allows me to take HUGE breaths without stabbing pain or a tickling throat.
6. The movie theater: If it wasn't so darn expensive, I would go more often! I like how all responsibility seems to fade away when you're watching a movie in the theater. It's like you're telling the world, "For the next 150 minutes, I am completely unreachable!" And, c'mon, with a giant bucket of warm, buttery popcorn on your lap, it's like the spa for your soul.
7. After finishing a huge assignment: Much like my cough attacks, this isn't enjoyable during the process. Only after. I love that "Ahhhh!" feeling. Maybe I should use that as motivation to further push myself.

These aren't all of my something-or-others, but I think it's a good start. Hopefully, now that I've recognized where my soul feels happy, I'll be able to enjoy these states more and spend more time smiling.

Midsummer Update

It's been a while. A lot has happened in the (almost) first two months of summer.
Nationals...were the best our dance academy has ever had. We honestly just kicked BUTT. First places all over the place. My tap solo was against 16 other girls, and I got second. It was amazing. :) Standing up at awards to receive that trophy was the happiest I've felt in a long, long time. Probably since before Alex passed away, which was three months ago, yesterday. It was my last nationals I've ever had, and my goal was just to get a ribbon--8th place or above. I've gotten 9th at nationals like three times, haha. Basically, I had an amazing, amazing time.
After nationals, I fell pretty sick. Everyone in my troupe had a cold or an infection or the flu virus at somepoint--that part was sucky. People were throwing up and I was just terrified that I would catch a horrible infection in my lungs. And the day after I got home, I was sneezing all over and over, which a sign for me that something is really wrong. I never sneeze. I made it to my quarterly visit, which was two days ago on monday, and my lung functions turned out to be 79%! Almost 80...awesome awesome awesome! I usually stay around 65%, so I was really happy, but still wondering why I've been feeling crappy. Dr. Marks said (Dr. Homnick left...I'm so sad) that it's probably a sinus infection that was starting to travel to my lungs. He sent me on my way, and I've been feeling better since I've started bactrumm, which was like a week ago. I even went on a run today(:
Oh...and after I got home from clinic, Justin and I had a Harry Potter marathon. 8 movies, 21 hours, one day straight. It was actually a lot harder than it seems, haha. We both kept falling asleep, but I'm glad that I can make Harry Potter jokes around him without him being confused, now(:
That's about it. I have a lot coming onto my plate, now...college apps, band camp, choreographing dances for troupe next year, reading all my AP Literature Summer reading books. So, yeah. Looks my lazy days on the beach are going to be more scarce from here on out.