Salt in My Soul Read online

  Before this weekend I wanted to go to UCLA and I could envision myself eating in the dorms, and swimming in the rec center, and going to class and walking around campus and going to parties at frats. But I realize that the only reason I envisioned myself there so much more than Stanford was because I’d never seen that side of Stanford. I’d only known about how amazing it is academically, which is obviously good but which isn’t the most important thing to me (I want balance). But besides the fact that it’s an amazingly prestigious name, it’s beautiful and looks like camp, and it also has a lot of convenience factors that make it feasible for me to go to school there. UVA was the school I initially wanted and loved when I visited. But it just wasn’t realistic for me to even consider it because it doesn’t have a good CF center (or any CF center at all, actually), it’s across the country, there’s no family nearby to help me if I needed anything, it’s in a small town, I’d have no car, and it’s cold.

  At Stanford, the weather is perfect, it has an amazing CF center, I have connections to the doctors (Drs. Cornfield and Weill are both friends of Danny’s), I have Danny’s house about one mile from campus so if my roommate gets sick or I need to rest or clean my gear I can go there, I’m going to have a car with a handicap placard, and I’m only an hour’s flight from home. It’s as if someone created a school that has all the qualities that realistically I need in order for me to live away from home.

  I went to my meeting with Teri Adams, who works for the Office of Accessible Education (OAE), which basically helps people with medical conditions and disabilities. She was pushing hard for me to get a single because she said most people with conditions like CF don’t do well with roommates and she wanted to prevent any potential problems. I explained how important it was for me to have the experience of a roommate, to live with someone, to not be isolated, etc. I told her that some people have personality traits that make it difficult to live with them. My issues are the noise of the treatment, the space it takes up, the need to be clean and get to bed early. But I compensate by being really easygoing with everything else. I’m not the kind of person who would start drama with a roommate and I avoid conflict by finding reasonable solutions to problems. I think I’m an easier person to live with than most despite all the medical stuff. She agreed that I could have a roommate, and we decided that I would get a sink in the room, and air-conditioning, and that I would take only two classes fall quarter. It’s better that way because I’m going to have so much to get used to living on my own, which is going to take up a ton of time. My daily regimen includes cleaning a million different things like sinus rinse, eFlow,*8 nebulizers, etc., that my mom used to do and I’m also going to be in a clinical trial, which also takes time.

  After dinner they broke us into groups for a scavenger hunt. My group was Anna, Alex, Garrett, and a guy named Matt. It was an interesting experience because Matt was blind and had a seeing eye dog, so we went really slow. It was an eye-opening experience…because the rest of that day I was just so grateful that I could see. He depended entirely on that dog and, although he loved her, she wasn’t perfect. At one point she did something wrong and he walked into a bike and cut his leg, and whenever there were curbs and street corners and stuff we would help him because the dog wasn’t doing a great job. It made me so sad but he seemed to be a happy person despite his enormous limitations. When we first got into our groups, he said, “Just so you know, I’m probably not going to be very good at this,” and it broke my heart.

  Walking around the campus, I realized how much of my happiness is based on seeing beautiful things in my environment, and that’s a whole part of life that he just completely misses out on. It’s funny how my mom always gives me the “perspective” talk but I never really thought it worked until now. I can’t believe how depressed I was to be on IVs (the round before spring break). So I had to miss swimming. So I missed a few weeks of school. Wow, big deal! This guy is blind, and somehow maintains an outwardly positive attitude.

  Saturday morning I had breakfast in the dorm with a bunch of random profros. I sat with a group of kids from New York who were pretty cool, and then I left to go to the athletic involvement meeting to introduce profros to club sports, wilderness programs…all the different ways to get involved in athletics. Afterward I asked the guy who was in charge of the wilderness program about the SPOT program (summer pre-orientation trip) to see if I could go on one of the trips with my treatment. He said the wilderness ones wouldn’t be possible because they’re backpacking so there’s no electricity, but the rock climbing and community service ones both have a base where you stay, so I could do those. And he was really cute! But I don’t remember his name. My mom asked him to show us where the gym was, so he started walking with us and then my mom was like, “Oops, Mal, I gotta go meet Dad, so you guys go along and call me after.” Haha, so typical, she just wanted to leave me alone with him. Wingmom!!!

  The last few months have been such a whirlwind…I went from my first round of IVs, during which I was basically doing nothing and watching TV all the time, to getting off and swimming in invitationals, then straight to Hawaii—amazing as always!! Then the day after I got home from Hawaii I went to the hospital, then the day I got out of the hospital I went to Stanford Admit Weekend. Last night was the first time sleeping in my bed since before spring break, so my first time since March. It’s now almost the end of April. And APs are in one week!! Wowww. I have been out of school for a very long time. Today was my debut back. But I only went to one full class (Gov) and ten minutes of Math.

  4/28/10

  I should write the whole Dillon/prom story in here! Rob (my water polo coach) came to visit my first week in the hospital and asked me who I wanted to go to prom with. Somehow he figured out that I wanted to go with Dillon, Kyle, or Brandon and said he was going to bring all three of them to the hospital in their Speedos so I could pick. I started picturing it being like The Bachelorette, so I told him that could not happen. Before he left he told me that he was going to bring Dillon over to visit.

  The next day he texted my mom, saying, “I’m bringing Dillon to visit on Wednesday,” and I froze, wondering how the hell he got him to agree to that. Dillon and I weren’t friends outside of school, we didn’t have each other’s phone numbers, we had never hung out! I was wondering what Rob said to get him to come visit me in the hospital, by himself, with no one else from the team. So I asked Rob, and he said he told Dillon straight up about prom. And I kinda freaked out imagining this. Apparently Rob asked Dillon privately if he would want to go to prom, and Dillon asked with who, and Rob said Mallory, and he said yes. And Rob said he seems interested but nervous. Then on Wednesday Dillon came with Rob. It was awkward but really funny because he was there to talk about prom but we weren’t talking about it. We went down to the cafeteria for dinner (Rob, Dillon, my mom, and me) and then we came back to the room and hung out there. Right before they were gonna leave, Rob said, “So, are we gonna make this official?” and we just sort of stared at each other. Finally Rob said, “Dillon, do you wanna go to prom with Mal?” and he said, “Yeah,” and then, “Mal, do you wanna go to prom with Dillon?” and I said, “Yeah.” It was like the minister at a wedding. And my mom was on the other side of the room pretending not to listen but I’m sure cracking up.

  The next day my mom gets a text from Dillon. He was going to come visit but she didn’t tell me anything else. So then this afternoon I’m sitting in my hospital room alone (my mom left because I guess he asked her not to be there) and he walks in with flowers and his jacket zipped up all the way. He said Tamara told him about the tradition of asking in a cute way (which I wanted). He hands me the flowers, unzips the jacket, and his shirt underneath has written on it, “Is this cute enough?” in Sharpie. I was so happy he asked me in a “cute” way. And then he asked me to go to prom with him. He looked a little nervous and a little sheepish but it was SUCH a cute way to ask, he got an A+. Then he stayed for two
hours and we had dinner in the cafeteria and hung out in my room. And it wasn’t awkward at all, it was easy to talk to him when it was just the two of us. He seems to get shy around adults.

  5/1/10

  Today was Prom!! I woke up at 9:00. It was a beautiful day so I decided to work out! I ran to Beverly, did two sets of stairs, ran a total of one mile (but with breaks in between), and walked home. Then it was time to get ready!

  Dillon arrived while I was trying to tape the edge of the dress to my skin so it wouldn’t move around, so I quickly tossed all my medical stuff into my bag, then went into the living room to meet his mom and see him. He looked really good in his tux.

  We took pictures in front of the house for a while, and it was kinda cute and kinda awkward, too. We left and went to Talia’s pre-prom, and got there at 6:00, right when most people were arriving. It was amazing to see everyone all dressed up looking gorgeous.

  Dillon was probably a little bit uncomfortable because he didn’t know most of the people, but I introduced him to everyone. I quickly started IVs right before the limo came. It was really squished but still fun to be going to prom at the Sheraton at Universal Studios. It was nicely decorated, way better than I expected. It was kind of club-like with lounge furniture and lighting and stuff. So we go in, see everyone and talk to people for a while, then we ate dinner, then everyone started dancing. It was fun being with the whole grade and everything. Then around 10:00 they said they were gonna announce the prom court. So everyone stopped dancing and they announced Rosie Kohn and Daniel Bradbury as prom princess and prince, and then they said, “And your prom queen is MALLORY SMITH.” And I just stood there stunned for about twenty seconds, not moving. And I thought I was imagining it, I didn’t even believe it until everyone started looking right at me and all my friends were pushing me up to the stage. So obviously I had no idea what to do with myself, I was so shocked and awkward and confused! I got my tiara from Dr. Tedford and went onstage but was behind a speaker so everyone thought I was hiding. And then they announced that the prom king was Kevin Hekmat!!

  I was really happy because I think it’s the first time I’ve ever been voted anything by my peers. I’ve won things that teachers and coaches have nominated me for, but this showed that my friends/peers like and respect me and it was a good feeling. Especially because I didn’t ask anyone to vote for me.

  My jaw dropped when I heard it was me, and I think Dillon’s did, too. Afterward I was walking around the party and people kept staring at me and saying, “Hi prom queen!” and one group of people I’ve never met before pulled me into their picture. I was really happy with my prom dress, which Jan, my mom’s friend, bought for me as a pity present when I was in the hospital. It was SO extravagant and I loved it!

  Crazy after-party story! After fifteen minutes of being at the club on Robertson, saying hi to a few people, Natasha asked me to come to the bathroom with her, so Dillon and I started following her and then I felt an itch in my throat and I felt him taking my hand and leading me the opposite way. I was really confused because I didn’t understand why we weren’t still following her to the bathroom. And then my throat really started to burn, and my lungs started searing a little bit, and my nose and eyes were watering, and I coughed a little blood. I noticed that the whole party was evacuating. Once outside, everyone was wondering what was going on, and someone told me that a guy from a competing after-prom party had set a tear gas bomb off. Which is really fucked up, of course.

  We were all sitting out there talking for a really really long time, a bunch of drunk people staggering and some others smoking. I was freezing. Eventually the security people started letting people back in. But since I already felt the damage in my lungs, I knew it would be stupid to go back in and risk more bleeding. Natasha offered to stay out with me, but I told her to go back in, and Dillon stayed out with me. Since the party was going strong and it was freezing, we decided to walk down the street to Norms Restaurant and get hot chocolate, which was really amazing since it was sooo cold out. It was fun sitting in Norms but we weren’t laughing, we were both a little bit tired, but it was a really nice night.

  I’m home now, listening to “Kol Galgal” right now btw, by Shotei Ha’nevuah…it’s amazing. It kind of reminds me of Lord of the Flies a little though, just like “Sullivan Street” reminds me of Atonement.

  5/15/10

  Can’t believe I was picked to give a speech at graduation!!! And Jason gets to give one as Class President!!!

  6/14/10

  I’m graduating high school!! Beverly Hills High School has been my home for as long as I can remember. My life has revolved around sports, friends, schoolwork. I owe so much to this school. Sometimes I would complain that I didn’t like it, or that I wished I went to a different school, but looking back on it, I can’t imagine having a better high school experience.

  What I’ll remember most:

  Driving to school in the morning with my wet hair and my hot tea, listening to music with the windows down, wind in my face, at 9:00 a.m.

  Walking through the hallways, still sometimes getting lost even this year. Mr. Borsum’s class—I’ve been in his class for three years now, and every year we do a little math and a lot of talking!

  Morning practice. Yes, I will miss it!! Dragging myself out of bed at 5:20 in the morning on Monday, Wednesday, and Friday, having it still be dark, driving to school and jumping in the water, and having already exercised by the time it’s 7:30 in the morning. I’m going to miss the physical aspect of it—it gets you in such good shape, and the social aspect of it—everyone having morning practice together, then afternoon, it really bonds you.

  I’m going to miss living in my house with my family, waking up in the morning and seeing them, and seeing them before I go to bed. Having my dad sit with me while I do treatment and when I’m falling asleep because I don’t like to be alone. I’m going to miss being in that stage of life where if you really need something, your parents can always make it happen. And this is the perfect stage of life, because they do so much for me, but I also have my independence and can do what I want. I’m going to miss Maria, and our half Spanish–half English conversations, and how she always tells me to clean my room but I never do.

  I really hope I have fun in college, and that I make the most of everything. I hope my health doesn’t worsen. Right now my lung function is 2.8 liters (down from my baseline of 3.4 liters) and they’re thinking this might be a new baseline. I hope that with the clinical trial it goes back up, and I hope college life doesn’t make me much worse.

  I hope I’m as happy a person in four years as I am now. I’m really starting to appreciate what an amazing childhood I’ve had, and I’m both nervous and excited for the future. Senior year has been such a whirlwind…I’m starting to really get sad.

  7/3/10

  Pediatrics vs. adult care when I start Stanford? They tell me the main difference has to do with parental involvement and how they treat me in terms of who makes the decisions for my care. I’ve always been a pediatric patient but Stanford is telling me I get to make the choice. I just can’t decide. They say peds is more nurturing, but I don’t want to be treated like a child. I just don’t know what’s right for me. Since I’d have to be transferred to adult care if I get hospitalized (at eighteen they put you in the main hospital), why would I put off the inevitable? I may as well make the transition now.

  7/10/10

  Made the decision to go with the adult team and met them all on Wednesday, then did ten tests and started a clinical trial on Thursday for a new drug called ataluren.*9

  7/18/10

  I’ve been too lazy and busy to write about what I’m doing, but I’m having a very good summer. I’m still working at Motive Entertainment doing PR for their movies, which I like. It makes me feel productive, gives me a reason to get up and out of the house, and it makes me feel independent. I’ve been goi
ng to the gym pretty much every day, doing yoga, spinning, and the elliptical. I need to start swimming again and I wanna go surfing, do real rock climbing, and paddling, and ocean swimming. I’ve barely been at the beach all summer, which is sad. I’ve just been soooo busy.

  I can’t even describe how I feel about going away. My days are so everyday, so normal, that I completely forget that I’m leaving so soon. My bathroom issues are DEFINITELY not resolved and it’s nerve-wracking. I don’t know how I’m going to deal with communal bathrooms in the dorms. If I can’t figure it out, I predict that I’ll just stop eating, especially if the food is unhealthy and makes me feel bad. That wouldn’t be good because if my weight isn’t stable, I can’t be in the clinical trial. I have to go to Stanford three more times before school starts, once in July, once in August, once in the beginning of September. I’m on a twenty-eight-day schedule, which has to be exact, and I’m required to do the e-diary for ataluren every day, too.

  No idea how to make the most out of a tiny dorm room so I don’t go crazy from claustrophobia. I also have to get more comfortable riding a bike and being close to other people on bikes (now when I’m within ten feet of anyone on a bike, I get freaked out and start wobbling).

  7/30/10

  I got my ears and cartilage pierced!!! It really didn’t hurt at all. People warned me it would hurt a lot but I think all my time with PICC lines and multiple IVs has made me capable of enduring a lot of pain.