Diary of a Dying Girl

High School

Even though she was two years my junior, I always looked up to my sister. As long as I can remember, she was my mentor, life coach, and hero. With a terminal illness looming over her shoulder, Mallory had no choice but to rise above. And she was wise well beyond her years.

—­Micah, Mallory’s brother

Thursday, July 23, 2009 (16 years old)

Was talking with my mom today about Britney Spears’ younger sister, who will forever be known as the girl who got pregnant in high school and had an abortion because her mom made her. It led to my mom telling me about when she was pregnant with her third child, my would-­be younger sister. The doctors advised her to terminate the pregnancy because the ultrasound showed that she had cystic fibrosis (CF), the number one genetic killer of children in the United States. They said it wouldn’t be fair to bring a child into this world knowing that it would suffer and probably die young. I was three at the time.

The next day, I was tested for CF. It turned out I had the disease, too.

Talking about the symptoms and the science doesn’t bother me. It never has. But other parts are just too embarrassing to share, so I don’t. I think that’s why I like writing in this journal so much.

Monday, July 27, 2009

Can’t believe I’m going to be a senior soon! I’m feeling a strange combination of excitement, anticipation, anxiety, fear. I made my college list. DEF not going to add any more, but I might take some off if the applications get to be too much. I’m thinking: Duke, Vanderbilt, University of Virginia, Stanford, the UCs, Pomona, USC, San Luis Obispo, Pepperdine, Michigan, UPenn.

Thinking about college apps always leads me back to thinking about what I want. My friends don’t seem to go down this rabbit hole the way I do. I think my diagnosis is why I obsess about it. But what is it I do want??

I want to grab life and take it. I want a rich, unforgettable, well-­rounded, happy high school experience. I want to fall in love, go to football games, make friends, laugh a lot, cry (but not about how much homework there is, which is the only reason I shed a tear these days). I want to live it for me, not for my coaches, my friends, my parents. I want competition to rear its ugly head only on the volleyball court or in the water polo pool, not in academics. If only. There’s just too much emphasis in high school on grades, success, money, the future. It’s killing my dreams.

I used to fantasize about EVERYTHING. About traveling, and adventures, and possibilities, and the future! I want to imagine greatness in life. But when you’re disillusioned with how life is, how it has treated you—­and you don’t feel like anything great is going to come your way ever—­you stop imagining. That’s what’s happened to me. My fantasies have been erased—­replaced with the mundane things in life, who I’m going to eat lunch with the next day, what I’m going to eat so I don’t keep gaining weight, how I’m going to get through all the school commitments hanging over my head. In order to fantasize about exciting opportunities, you have to think, in some small part of your heart or mind, that you deserve these things. I’d like to think I do. But this world has so many problems—­death, disease, natural disasters, human cruelty, animal cruelty, racism—­why should I get what I want?

I also just want to be a kid again. I moved out of childhood the day I graduated from middle school, and I keep looking back. College is looming large, but I’m still stumbling over vague ambitions and goals, requirements, and standards, as school takes over our brains and we perform rote functions like embedding quotes, improving handwriting, studying for exams, taking standardized tests. I don’t want high school to have just been about getting into college.

Tuesday, August 4, 2009

I know this might sound really dramatic, but I feel like the threads of my life are unraveling and I’m standing here helpless, watching it happen, not being able to do anything about it. I’m indecisive, sort of paralyzed emotionally, because I don’t trust my instincts, which my mom always says is a sign of insecurity. I think that’s what’s happening to me. I just don’t understand why. The funny thing is that people always call me the Golden Girl because they think I have it all. It bugs me because I so don’t.

Happiness is a choice, I know that. And I’m usually good at making the choice. But for some reason I can’t get there these days. I’ve got these internal hallucinations that are so haunting I can’t escape them—­even when I close my eyes—­because the images play on my eyelids as if projected on a movie screen.

Maybe my current angst has nothing to do with my indecisiveness, my insecurities, school, or what other people think. Maybe I’m just mad that Carrie’s on the phone with Jay right now and she won’t tell me what they’re talking about. Maybe mad isn’t the right word at all. Maybe I really mean pestered or bothered or annoyed or suspicious or something else altogether. I don’t think of myself as the jealous type, but . . .

She says they’re not talking about me, but I don’t believe her, and even if it’s true, I still don’t like it. I just hate that no matter what’s going on with us, Jay always brings other people into it, which means other people know more than I do about my relationship. I also hate it when Jay expresses his feelings to me, so I guess I’m just hoping that he doesn’t have feelings, which is kind of too much to ask for.

I don’t know, something about us doesn’t feel right. It used to, but now I don’t get excited to talk to him, I don’t get excited when he texts me, I wouldn’t rather see him than any of my other friends, and I don’t particularly love kissing him. It’s not bad, I just don’t feel any passion. This could be just me resisting a relationship and being screwed up, and I don’t want to regret it later if I push him away because I’m scared. Maybe I’m just more of a noncommittal type of person. I really don’t like to be tied down to anything. I just get so mad at myself because I’ve been saying that I wanted a boyfriend for sooo long, but now that I finally have the opportunity, I push it away. What’s that about?

Saturday, August 8, 2009

Still trying to figure out what I want. The problem is that I don’t know myself anymore. I need to figure out who I am before I can know what I want.

I love to read, but I don’t usually finish entire books, because I’ll pick one up, then get distracted by another one that I want to read and start that one. I don’t finish books because I like books too much . . . that’s kind of ironic. Right now, I’m reading The Idiot by some Russian guy with a ridiculously long last name. My favorite books are The Clan of the Cave Bear, Catch-­22, and White Teeth.

I love laughing. Duh. It’s the only thing that can save me from boredom, sadness, anger, annoyance . . . when I laugh really hard, I am completely silent, but you can see my body convulsing. It’s really strange.

When I’m bored, I don’t watch TV. I either read Wikihow (You know you secretly want to learn how to make circular bubbles while diving, make a shrimp out of a plastic straw, or attach a garden hose to a kitchen faucet!), read song lyrics, or stare at the ceiling. Just kidding, except for the first two.

I find pretentious teachers really amusing. Although I have to say, most of the teachers I’ve had in high school have been amazingly understanding and helpful.

I miss a lot of school. I’m not sure what people think about that. But it’s hilarious how even though I have only been to chemistry eight times this year, my teacher still reads my name on the absent list every day. I should be on a list when I go, not when I miss.

I can talk for a really long time if I want to (pretty obvious by how long this entry is). I guess I have a lot to say, unless you’re talking about the economy, chemistry, or football. In that case I shut up pretty quick because I don’t care.

None of my closest friends have names longer than one syllable. I mean technically they do, but I get rid of those names in my head and give them one-­syllable names. Same thing with my family, example, Micah is Bridge. I call my dad Pidge and people always think I’m calling him bitch when I talk to him, which I would never do.

I’m really nostalgic. I love to lie on my bed with a cup of tea and look at childhood stuff—­pictures, books, letters, TV shows, etc. Doug was always my favorite TV show, Harry Potter my favorite book series.

I don’t like the number twenty-­one. The drinking age should be twenty (or eighteen). I don’t like any odd numbers except for nine. They’re incomplete, and I like things in pairs.

I get these random ideas, which at the time they come to me seem brilliant, and then I think about it after and realize they’re really dumb. I was going to start a company that sells handmade shell jewelry and extra-­long jeans (thirty-­seven-­inch inseam to be precise, for other tall hard-­to-­find-­jeans-­for people like me). This is actually really stupid because those two things have nothing to do with each other, but I wouldn’t want to sell anything else, and I have no business experience, and no interest in finances. This all means I would suck at having a business!

I hate having political or religious debates because I always think the people who don’t agree with me are insane and I don’t want my beliefs to disrupt my friendships. I usually feel very strongly about my beliefs, and am not really open to other opinions, because only logical arguments are convincing to me, and I tend to be on the side of logic.

I think the sport of hunting should go extinct ASAP. Hunting is just as bad as serial killing.

I don’t smoke (ever). I don’t really understand why anyone has the desire to. I don’t judge people who smoke . . . yeah that was a complete lie; I kind of do.

Friday, August 14, 2009

I used to think some of my angst was the result of this overwhelming desire I had to be with a guy. That desire wasn’t being satisfied because I wasn’t hooking up with anyone or going out with anyone. Now I am hooking up with someone (Jay), but I’m still unsure about it. I don’t think it’s normal to have as little experience as I’ve had. I mean in some ways I’ve had more experience than other people because minute for minute I’ve hooked up more than a lot of other people have, but all the situations have started so unnaturally that I’m not sure they even count. They happened when I met someone new—­someone who didn’t know most of the people I know, so I got really reckless (because it didn’t matter if I got rejected).

I just wish I knew what guys think of me when they see me. Do they see me as pretty? Do they see me as looking old? Do they think I look manly (because I’ve gotten that before)? The guys that I know from school obviously don’t see me as someone to be with and I’m not sure how I got that reputation. Maybe because I’m not sure how to act around guys to make them see me as someone to potentially like.

If things don’t work out with Jay, I would like to go for someone I know instead of some random person, but the problem is that the only people I ever like are people that I don’t really have a chance with.

Before Jay, I “liked” Terry, who I had only spoken to about three times. How can you even say you like someone that you don’t really know? But I always do that to myself, I set myself up for failure by getting obsessed with people who don’t have any idea I see them that way and would think it was weird if they did know. This is such a ridiculous thing that I’m writing right now, I want to burn it, because I sound so pathetic and desperate and usually, I get along pretty well without a guy. But now I have a guy, sort of, and am still feeling just as unsettled. I just don’t know what to do anymore. Okay, I’m done writing this, it’s not making me feel any better at all.

Saturday, August 15, 2009

I woke up today still dwelling on all this. Ruminating actually. I shouldn’t settle for someone just because I want a boyfriend, right? When I hung out with Jay two nights ago, I wasn’t feeling well and I was really nervous to start double volleyball sessions the next day and I only had one hour to spend with him, so it was a bad situation. But I kept thinking I don’t want to be anything more than his friend. How do I know I can trust that feeling? Maybe I just need to get out of my comfort zone. A girl would be lucky to have Jay as a boyfriend because he would be a great boyfriend, but how come I don’t want him? Does not wanting him mean I am a bad person? I hope not . . . not everyone is for everyone . . . it’s not like just because he has a checklist of amazing qualities, I automatically must like him.

I’m also really bleh right now because I started volleyball yesterday, so I feel like I have no time. I love the sport, but I don’t love all the sacrifices I have to make for it. Although I guess I don’t really have anything better to be doing . . . it just seems that five hours a day is a little bit much for three weeks of summer. But we have so much potential this year, I think it will all be worth it in the end. In previous years, when we sucked as a team, it seemed ludicrous to put in so much effort when we were never going to have huge accomplishments anyway.

I’m actually excited about this season, so I don’t know why I’m saying that I’m bleh. I guess it’s because I’m annoyed at myself about Jay. It’s kind of ironic, because when I wanted him, he was unattainable (I didn’t know why then), and now that he really wants me, I can’t make up my mind. It’s really easy to admire hot guys from afar, but it’s another thing to make them like you, to get them to date you, something which I have never succeeded in doing until now. I don’t want to settle, but I also don’t want to be a lonely prude old hag who marries the first person with a dick who wants to date her.

Friday, August 21, 2009

What if all my ambivalence about Jay is, in fact, me not wanting anyone to get close enough to see what my life with CF is really like? CF is a bad disease to start with but the layering on of resistant bacteria wreaks havoc in so many ways.

For me, everything changed when I came home from camp, the summer after sixth grade. I wasn’t feeling great but didn’t think anything of it. It was the second day of school; my mom had picked me up to do an errand and we were walking down Sunset Boulevard. I was tracing the lettering on the poster for the next show outside the House of Blues when my mom’s phone rang. “Hello?” she said. I was waving at her to draw her attention to something, and she just shot me this look that I stopped me my tracks. She was silent for a while . . . which if you know my mom, is not a good thing. And finally, she just said, “Oh fuck!” The street was humming with people, but all I could hear was the tinny voice on the other end of the line. That voice belonged to my doctor, and when my mom asked if we needed to come now, he said yes. Right now. I asked her what was wrong, and she made this guttural noise, a noise like when you’re just about to speak but the words get tangled in your throat and you can’t choke them out. And I asked, “What, what?!”

“That was Dr. Pornchai,” she said. “Your sputum culture results came back. You have . . .” And she just looked at me and . . . paused. She couldn’t say it.

We got in the car to drive to the hospital, and she cried silently the entire way. We found out that day that my lungs had been colonized by Burkholderia cenocepacia, otherwise known as B. cepacia. It’s the deadliest strain of the deadliest bacteria known to infect CF lungs.

Once I was admitted, they put me in a really stark white room. My mom was freaked out, but my dad was exhibiting an unshakable calm. I could tell it was an act. A lot of whispering took place while I tried to sleep. I was tossing and turning and coughing with a force and depth I hadn’t known before. B. cepacia can be found anywhere in the natural environment. It’s all around us. But it’s an opportunistic pathogen, which means it can’t derail the lungs of a healthy person. You have to be vulnerable in order to get an infection from it. You have to have something like CF or AIDS or cancer. Fewer than 3 percent of people with CF have B. cepacia in their lungs, so my question was, why me?

That year at camp, I had been irresponsible. I was just being a kid. I didn’t like the food, so I subsisted on bread and salad and the occasional chicken tender. My cabinmates and I would stay up every single night whispering in our bunks about our counselors’ secret lives and which girls were mean to us and who kissed who after the nighttime Siyum song session. During my treatments, I would talk while I was inhaling medications through the nebulizer, which meant losing some of the lifesaving meds into the surrounding air. I’d shave ten minutes off each treatment to make the next activity on time. And when you’re not vigilant with CF—­the lesson my mom says she will take to her deathbed—­when you are not vigilant every second of every day to keep your body strong, anytime something touches your mouth it’s a potential encounter with a dangerous pathogen. The infection entered the microbial ecosystem of my lungs uninvited, waiting until my body was vulnerable to make its move. Microscopic armies of bacterial cells marched in and set up camp, creating colonies that no drug in existence can evict.

During that admission, everyone was trying to put this weight on my shoulders and make me feel it, make me wrap my head around it and understand what it meant to have bacteria that was known for its resistance. But I couldn’t. How could they explain to a twelve-­year-­old child that she might never be able to get a lifesaving lung transplant? That once she reaches end-­stage disease she probably won’t get the second chance at life because her strain of B. cepacia is the strain most associated with rapid decline, high virulence, resistance to antibiotics, and high post-­transplant mortality.

I didn’t realize that my chance encounter with an opportunistic pathogen at camp, the safest place in the world, was like walking up to the devil’s vending machine—­I gave up my life as I knew it, and in return, I was left with the sinking and undeniable reality of my mortality. Null and void. Erased.

Until then, lofty medical terms and distant notions of death were just words. I didn’t want to think about any of that and I didn’t want to know. I just wanted to be a normal teenager with all the ups and downs that entails. Is that really possible now that I understand exactly what it means to have B. cepacia? Could that be the reason I keep pushing Jay away?

Saturday, August 22, 2009

During lunch yesterday I found out that there are now three volleyball captains, and I’m not one of them: I was actually crying, which really surprised me because I totally thought I didn’t care. But it’s humiliating since I’m the only person on the team who has been a starter for three years, and I was captain last year. Also, I was named Female Athlete of the Year at Beverly Hills High School three years in a row. Now I’m wondering if they gave it to me out of pity. Or maybe because I’m one of only a few who play three sports.

It’s Micah’s birthday today—­he’s having a party at his frat tonight!

Friday, August 28, 2009

I got good numbers at the doctor today, so that’s one good thing. Dr. Pornchai told me two weeks ago that if my numbers didn’t go up then I’d have to go on IVs, and I would have lost my volleyball season if that had happened. I’m really relieved about that. I also wrote a rough draft of my college essay last night, and even though it’s corny and doesn’t really make sense, at least I have a draft down. It was starting to hang over my head. I’m gonna stop writing and go pee now for the millionth time today. I swear, during volleyball season I drink more water and sweat more and pee more than a giraffe. No joke.

Sunday, September 20, 2009

I can’t believe I’m a senior in high school!! Last night we got dressed up and went out with a random crew. And I just decided to drink because I hadn’t in a while and I felt like it. The people we were with were drinking, too. I started out having three shots but then I ended up having five. . . . Badddd Mallory! It was all Patrón and that’s why I had so many—­because Patrón tastes so good! Later in the night, we decided to drink water and eat bread and stuff so we could sober up before we went home, but we ended up staying out until 2:30(ish). And I asked my mom if I could sleep over at Jay’s house (realizing I need to write more about him/us since it keeps changing), but she said no because then other people would think I was a skank (my word, not hers), which I totally think is true now that I’m home; it would have been extremely awkward to wake up in the same house with his parents and have to explain why I slept over! He did ask me to be his girlfriend and I was like, Ahhh . . . finally! I’m ready! And then a little later I went home.

Tuesday, September 22, 2009

Today my mom asked me if I had landed on any colleges to apply to. The conversation got me thinking about my GI issues. I don’t know if my inability to go to the bathroom in other people’s houses is mental or physical. But college will be a huge problem, a big dilemma. In fact, it will be a catastrophic situation. Even now it prevents me from wanting to sleep out and even from going to school sometimes. This is the one secret I have kept from every single person except my mom. I hate admitting it—­even to myself—­because it’s so pathetic. I tell myself to grow up. I can’t live at home forever.

Will I need to stay close to home because of CF? I hate exposing people to the truth about how I live, what I have to do each day to stay alive.

Saturday, October 3, 2009

I had the cutest day today, I slept in and had breakfast with my mom and then did yoga with Tamara and then did college stuff and some homework. Then Jay came over and we had a really good time tonight—­everything’s good now. He’s really good-­looking and funny and smart, so I’m kind of starting to like him more and more. And I’m getting more used to having a boyfriend, it was really weird for me in the beginning. I was sooo not used to it. I sound like a broken record. He didn’t sleep over. I’m NOT ready for that.

Sunday, October 4, 2009

I woke up today after sleeping for twelve hours, completely exhausted. I had chills, hot flashes, really bad chest pain, runny nose, sore throat, and fatigue. I pretty much sat on the couch staring at the wall for an hour. Turns out I had a temperature, and Mom has swine flu, so I was scared that I had it, too. I went to Starbucks and Koo Koo Roo with Pidge once I was feeling a little better. The wild thing is that Jay is sick now, too; he wasn’t feeling well when he left last night and ended up in the ER with some virus. I feel like sickness is invading everywhere and it’s so hard to avoid it.

It’s kind of funny that it’s now Sunday night, I’ve played six volley­ball matches this weekend, and I haven’t showered since Friday morning.

I was kind of depressed all day today, but I think it was just because I was feeling so sick earlier—­I’m feeling so much better now.

Thursday, October 8, 2009

The past two days have been so intense and good. Yesterday was our home game against Santa Monica. We’d been building it up to be the biggest match of our season and expecting/hoping to win for so long that I had been anticipating it and anticipating it and I didn’t know what to think about it, but when it came it was absolutely amazing. It reminds me why I play sports, for that feeling I get when I play well, and the team plays well, and we win. It was a home game, I had friends and my mom and dad and my grandparents there watching, we had a lot more fans than usual, we were all PUMPED for the game, the warm-­up was amazing, I slept well the night before, and I just wanted to win so bad and knew we could win. My defense was really good in the game, and so was my serve-­receive . . . it wasn’t absolutely perfect, but I was being really scrappy, helping out, and being really involved in every play, whereas sometimes I freeze up when I get nervous. But I was just putting everything onto the court, and I was 100 percent zoned in, I didn’t even see the sign that Becca and Maria and Natasha made me, and I didn’t even notice that Jay was there until I was sitting on the bench during a time-­out. The first game we won 25–­14, and the second game we won 25–­23. I served on game point of both games and didn’t miss my serves, and we were all so confident and loud and excited and zoned in that we were just unbeatable to Santa Monica, and they looked like they had no clue what to do. It was a complete reversal of positions from last year, when we looked like deer in headlights against their amazing team. But now we’re the amazing team and they are the one that sucks. It’s pretty awesome.

After the first two games, I was a little nervous because a lot of times we win the first two games and play really well and then let the other team come back in the third game, but in the third game we beat them 25–­14 again! And I served nine points in a row and about half of them were aces and that’s how we got so far ahead, and then I got a kill on match point. So all in all it was awesome, and apparently it’ll knock them out of being ranked in the top ten and put us there, which is what we’ve been aiming for all season but has continually eluded us.

Saturday, October 10, 2009

This morning was the SAT. It’s been a year since I took it in October of junior year, and since I scored really high, I didn’t take it again until now. I think I did really well! And Jay tested at Beverly, too, so I got to see him before the test. I was wearing a Marist T-­shirt from Michelle and my UCLA sweatpants (Haha!) so I was really decked out in college gear, which is pretty appropriate for taking the SAT. I am so relieved that it’s done, and that I took my math test yesterday and got a 98 percent!! Everything’s turning out nicely this weekend. Plus, it’s my birthday Monday and there’s no school so I’m super excited about that. And tomorrow I’m going to brunch with Becca and Michelle and Natasha in Santa Monica and we’re going in pajamas because I’m surely going to be too lazy to put on real clothes, and then we’ll probably see a movie. Today after the SAT, Jay came over for a little while, and then he left and I wrote one of my college essays and then wrote a list of all the books I can remember reading since seventh grade . . . it’s like seventy or eighty books.

Tonight I went with Becca and Natasha and Michelle and we hung out at Becca’s and then we went to dinner really late at Islands, so now I feel kind of sick from the French fries but it was worth it because I haven’t eaten them in forever. And sometimes you just need to eat what you want; I can’t deprive myself all the time. I love hanging out with those juniors—­it’s nice to get away from the college app pressure and hang out with people who still are in high school mentally and act like they’re in high school, because we are (still in high school) but seniors always forget it. And they’re all so sweet, like planning stuff for my birthday and getting me cards and presents and stuff, and they’re just so thoughtful and nice and fun to hang out with. I just want everything to stay the same and to have another year of high school after this one. But that can’t happen, and I don’t want to stay here once everyone else moves on and be the only person still living in the past, so I guess I just have to accept what’s coming and get on with my life. I’m going to miss my family, including Maria, who has lived with us since I was five—­and my dog Dewey and Millie and Grandma and Grandpa. And what if Grandma or Grandpa dies when I’m in college, or what if Maria moves back to El Salvador? I’d be seriously depressed. Because everything’s pretty good right now and I want it to stay how it is and not change.

Wednesday, October 14, 2009 (17 years old)

I’m so completely overwhelmed right now. It’s like my whole life is in overdrive and the more I have to do the more I procrastinate so everything builds up and I just feel like I have no time for anything and I’m running late constantly and I’m always needing to figure out what is the least important thing, so I don’t have to do it. I haven’t been to physics or physics lab in days, and I’m so behind and I missed a quiz, and I don’t even know what’s going on in the class. In English, I am six days late in taking a huge, huge test on the whole Bible and mythology, which I know nothing about and didn’t study for enough. I missed the National Honor Society meeting, so I don’t know what happened. I’ve missed government for the last four classes and the economics part is hard for me to understand, so reading the book really isn’t enough. I still have more college essays to write, and when I have a ton of stuff to do (like tonight), instead of doing it, I sit here and write about what I’m NOT doing in this journal, which is not productive. But I think it helps me mentally.

DISCLAIMER: If future Mallory is reading this, don’t think I’ve spent high school being sad. I just don’t write in my journal when I’m happy. And I need to learn how to block the negative from my mind. I need to make a list of things that make me happy and do at least one of them every day. But right now, I need to finish reading . . . and pray that my teacher doesn’t check my math homework, which I’m not doing.