Sixty-Five Roses

            I didn’t know that was going to be the last day. I swear I didn’t know. If I had known, I would’ve baked oatmeal raisin cookies instead of buying chocolate chip. I would’ve worn the earrings she liked—the ones that looked like little turtles. I would’ve brought a game she actually enjoyed playing. But I didn’t know, and I didn’t bake or wear or bring, and that was the day Rose died.

***

            “Took you long enough!” she yelled. I rubbed my hands with sanitizer upon entering room 223, trying not smirk at the way her voice cracked when she was irritated. Florescent overhead lighting mimicked noon in the worst possible way.

            “Oh, be quiet. It’s eight in the morning, you brat.”  A shiver seized the hair on the back of my neck as I adjusted the thermostat. There was no point in asking if she wanted a blanket—she didn’t. My eyes brushed her bones, knowing that drum-tight, moon-colored skin was the normality of her condition. Her blue lips fused into a firm line as she adjusted her oxygen cannula, then her floppy sunhat, which she insisted on wearing year-round.

“What’d you bring me?” she asked.

"I'll tell you what I should've brought you—nothing.” Rose laughed in reaction, mucus bubbling in the back of her throat. “Hey, can you even see with that thing on?”

            "Obviously. Not that there’s much to see here, anyway," she said. And she was right. With rounded furniture in varying shades of gray and a third story view of sidewalk cracks and bus station smokers, blindness seemed like a tumor worth trading for. Out came the cookies and the deck of cards.

            "Seriously? We played Uno yesterday," Rose said, not at all trying to conceal her disappointment. I constantly eyed the growing dullness of her corn stalk hair and wondered whether she was actually swallowing the pills I placed next to her milk. But when it came to what she was feeling, there was no guesswork involved. Methodically, I took off my coat, tossed it onto the empty recliner, and sat at the foot of the bed.

            "Well, Uno is a classic. And the classics are classics for a reason,” I replied, shuffling.

            “That’s what my dad says about his music.” I paused for a moment to watch her. Her freckles hid in response to January snow, clashing with the perennial power of her eyes. Her port dressing was coming loose, barely visible above the neckline of her t-shirt.

            “When was the last time you talked to your dad, Rose?” Now it was her turn to pause.

            “Last night.”

            “And what did he say?”

            “Nothing. Just the usual stuff.” She was growing more and more annoyed, her gaze refusing to set from my fingers and the cards.

            “Is he coming to see you, soon?”

            “Deb, does it matter?” Her eyebrows blew together and furrowed. “He’s too busy with work. Besides, you’re way more fun. And you’re a nurse. If I was dying, you would know how to save me.” She pushed her bangs behind her ears and I could see tiny dewdrops shimmering on her forehead.

            “Why would you say something like that?” I asked.

            “Because it’s true.” A cough rattled from within her ribs, proof that disease had rooted itself in a place neither of us could reach.

            “Here—we’ll start with more cards this time. It’s harder, but it’s also more fun.” Rose’s nostrils flared as I passed her seven Uno cards and straightened the deck between us. She froze, staring at her purpling fingernails.

            “You won’t stop coming, will you, Deb?”
            “Well, considering how often you tease me, I should.” I dug a finger into her side and a single, scratchy laugh was uprooted from behind her teeth. “But, no. I’ll always come. Life would be far too boring without you.”

            “Ugh. Stop mushing out on me and play.” She picked up a chocolate chip cookie, bit into it, and grimaced. “You know,” she said, chewing, “these taste like shit.”

***

            I often look back on that day and consider the things I could’ve done to give myself more time with her. I ask myself if the meticulous lip-liner was worth it—if my sedan really needed to be washed. They called it “Rose’s Celebration of Life,” but that’s not at all what it was. Or at least that’s not what it turned out to be. I withdrew into my skin, safe and unchanged, and peeked: thirty people in a dim room they could barely afford, listening to a man preach about a god they didn’t believe in, weeping over the loss of a girl they never paid attention to.

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.”

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.

Bittersweet

Today's the first day of summer. It feels strange to think of all that has happened in the last year...my first date with my boyfriend was a year ago today. I was looking forward to kicking butt as a junior. Alex and Ilene were both sick and in the hospital. As it turns out, only one out of those three things lasted. Justin and I are still together--he's my best friend--but my grades turned to crap and my cysters are gone.

Just like at Alex's celebration, Justin and I sang Winter Song at Ilene's funeral on Monday. It was a really short service and her family kept thanking me for singing. It's just so strange. I feel so happy sometimes and so sad others--it's like I'm not in control of my own emotions. And it's taking a toll on my friends and family. Well, not really friends...basically, it's just Justin and my parents. I've pushed everyone away in the last two months.

I'm trying to throw everything I have into dance. Dance is my one uninhibited place--I used to think writing was like that, too, but I'm coming to realize that I'm not as good at writing as I thought. I mean, I don't try on here...I just type and don't look back. But when I actually put my entire being into a piece, like a narrative or a poem, it just doesn't come out like I hope. I wanted to be the best, but I'm not.

Anyway, dance. I leave for nationals in less than a week...that seems so close. This is my last year on the competition team. Next year I'll do a solo and choreograph a couple pieces, but that's it. Bittersweet.

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.

May is a Tough Month

Things have just been hard, lately. Alex's passing is starting to hit me in waves, as opposed to one continuous shock. I suppose that's somewhat of a good thing, but it's making my moods extremely unpredictable. I'm up and down at any given moment, and to be honest, it's exhausting. And the most frustrating part of this is that, in this type of situation, Alex would be my rock. The one who I'd lean on for support and vent to until my spirit feels lighter. I just miss her so much. The pain will never go away.
In addition to the emotional emptiness of grieving, my physical health is growing unsteady. For the past week or so, I've been completely exhausted all the time, and for the past few days I've had headaches and fevers. I've also been dizzy, nauseated, and had lung pain on my left side. I mean, I can honestly taste the infection in my throat. I don't know why this is happening, considering that I've been working extra hard on my treatments. But I guess that's just how this disease works. I hope it's not an infection brewing...I only have three more weeks of school until summer, and I cannot afford to get even more behind. I already feel like I'm drowning in information that I don't understand.
Oh, and in addition to all this, my walk is in exactly one week. There is sooo much to be done...t-shirts, food, collecting donations, and just getting people to care. It's gonna be a tough month, that's for sure.