Every Breath I Take

by Chynna Levin

  That was another huge problem for me—no one would talk to me about what was going on. I could see that they noticed the changes in me, but everyone was tiptoeing around the subject. It was the same feeling I’d had when I first started to crash—the sense that something was very wrong but that no one was explaining it to me. At the time, what I wanted was for someone to just come out and say, “Claire, you’re crashing. You have sepsis, and you may die.” It sounds morbid, but I just wanted the truth so that I could accept it in my head. Instead, I had to go blind into everything, and it was the same situation when I came out of the coma.

  I’ve finally come to the point where people can talk to me about the experience and honestly say, “Yeah, you looked really sick,” but it took so long for the people in my life to be open with me again and to not feel like they would hurt my feelings or make me depressed if they told me the truth. For example, at one point during my coma the doctors had to actually drain fluid out of my lungs because I was drowning in the liquid. In order to do that they had to flip me upside down, but when they flipped me I swelled up like a balloon because all the liquid went into my tissue. Obviously, I don’t remember any of the experience, but I bet it looked pretty bad.

  When people would tell me about the coma after I woke up, there was always this two day gap, and no one would talk about what had happened during that time. I’d ask about it, but even my doctors skirted around the details. I’ve always been able to translate medical talk and know what’s going on with my health, and this was different. I was being babied in a way, which I had never felt before because I was always so in charge of everything.

  After I finally learned what had happened, I was upset that no one had told me the truth, but now I realize it was because it was so hard for them to see me like that. Now that I’m finally getting stronger, I understand that it’s difficult for the people I love to talk to me about these kinds of things because it’s not me, it’s nothing they’ve ever experienced with me, and they have no idea how to talk about it.

  For my part, I have to accept that this is how things are going to be from now on. I’m obviously sick. Now I have to learn how to accomplish living with that. Right now, in my life, I’ve come to a really good point where I’m able to accept the situation and can figure out how to work with people and make them feel comfortable. Although I’ve learned that sometimes I can’t control certain things in my life, I can make the decision to have power over how I live with CF. I can be an advocate, teach people, and give tips on how to live with the disease.

  Chapter 5

  the foundation

  after the coma, things were definitely tough, both physically and emotionally, but something really amazing also came out of the experience—Claire’s Place Foundation. Although we have many different resources now, inspiration struck because of one simple fact—it’s tough to travel with cystic fibrosis.

  An Idea

  in a lot of ways, traveling is never easy. You have to pack, deal with planes or other transportation, and sometimes even leave behind the friends and family that help support you. However, all of that is much more difficult to do when you have CF, or any illness, for that matter.

  I love to travel; it’s one of my favorite things. For me, it’s one of the few “normal” things I have in my life. I’m not saying that I need normal or even want it. I enjoy my crazy, totally abnormal life. But traveling is the one thing I can do that doesn’t make me feel like a typical CF kid. When I’m traveling, I’m not the sick kid; I’m just a girl who is traveling. It’s the one thing that lets me get away and leave my history behind—rather than dealing with doctors and procedures, I get to have amazing traveling adventures.

  However, traveling has never been easy, even when I was younger and didn’t have all of the medical equipment I’ve had to start using since the coma. It isn’t just the packing and moving around that’s a pain, though. It takes a real effort of strength not to be afraid, to leave behind friends, family, doctors, and hospitals that have been a safety net.

  When I’m traveling, it’s tough not to think, “What if I start seizing? What if my lungs fail again?” It’s very hard emotionally. You’re away from the places and people that make you feel safe. That’s also part of the thrill of it, though. It’s a time when you don’t get to rely on hospitals or doctors. You have to rely on yourself, and that can be an amazing feeling.

  Back when I was just starting to come out of the coma, I was remembering the strange visions I’d had when I was in that dream world. It was this amazing place with icy glaciers, rolling green mountains, and beautiful crystal coves. It was gorgeous, and I really wanted to go there. When I started to feel well enough, I decided to try and track it down, Googling everything I could remember about the scenery. I found pictures of Alaska and realized it was just what I had seen in my dream.

  At the time I didn’t think I could travel at all because I needed to have a certain amount of lung function to leave Los Angeles, and I wasn’t there yet, but I told my mom about Alaska. She was excited and told me that she had just spoken with my doctor, who had given her the good news—my lung function had increased to the point where I could travel again. Suddenly, going to Alaska was a real possibility. Although I was worried—the nearest hospital would be two hundred miles away—I knew I had to make the trip.

  So my mom and I went online and told all of our family and friends. During my coma, so many people learned about my situation and offered their support that we had actually set up a Facebook page so that my parents could update people on my condition, and we ended up with around seven thousand people who were always looking for status updates. It was crazy!

  When we posted about the trip, however, all of these new friends started offering things like mileage and condos in the area where we were staying. They donated all of this incredible stuff, which allowed me to take this amazing trip that might not have been possible otherwise.

  And that’s when I started thinking…

  I really wanted to help other CF kids travel. All my life, traveling had been difficult, even more so after the coma. On top of that, a lot of people around me, especially my doctors, would say, “You know, Claire, I don’t think you realize how hard it is to travel. I don’t want you going. You don’t have the right equipment, experience, or support.” Because of that, I missed out on a lot of travel experiences.

  For example, I’m fifteen and I’ve never been outside of the United States. It seems so basic, especially in this day and age, but we could never make the trip because, when I travel with my family, we do it all on our own. There’s nowhere out there where you can go that might help you with your medical needs when you’re traveling.

  I knew that if I could change that, I would be satisfied with my life.

  I could help other kids travel and learn from my experiences and mistakes—because I’ve made a lot of mistakes. When I was five-years-old, for example, I flew to Texas to visit my grandparents. It was my first trip alone—my mom was putting me on a plane and my grandparents would pick me up at the other end of my flight. I was so excited, but when the time for one of my treatments arrived during the flight, I couldn’t remember what I had done with the bag I needed.

  The flight attendant helped me look, but I was freaking out. We finally found it and everything worked out, but ever since then I’ve been paranoid about losing my stuff. Those are the kinds of things other CF families might want to know about, and I wanted my foundation to give other kids the incredible chances to travel that I had experienced because of the generosity of others.

  So when I got back from Alaska I started looking into the possibility of starting the foundation, and it’s been such a crazy process since then. Every time I think about it, I can’t help but be amazed. “I’m just a teenager!” is the first thing that always comes to mind, followed by, “I don’t know how to do any of this foundation stuff.” I still don’t know how to do any of it—it’s over-my-head-adult-stuff. But if I wanted to h
elp kids with CF travel and give them some hope, I had to step up and be that adult.

  The Flash Mob

  when my parents and I finally made the decision that this was something we definitely wanted to do, we had to figure out how to get the ball rolling and promote our foundation. I remember sitting at the table one day just after I had come home from the hospital. I was weak and not feeling my best, and when my mom came in and told me about this idea her friend had suggested—a flash mob—my first thought was, “What?” At that point, flash mobs weren’t very common, and I had no idea what it was. So my mom described it to me, and I figured it would be her project.

  Basically, a flash mob is a group of people who learn to do a certain dance and then meet up at a prearranged time and place in order to do that dance in public. The dancers dress like random people in the crowd, so you never really know who’s in on it until they’ve started. The whole thing with a flash mob is that you can’t really tell anyone about it, since it’s supposed to be this stealth dance routine. Only the dancers and organizers know where and when it is going to be held.

  When I finally learned more about it and realized how cool it was, I really started to get excited and wanted to be a part of it. However, in the beginning it was nearly overwhelming. After all, here we were trying to start a foundation while dealing with all of my new medical needs, and now we had to plan a flash mob on top of everything? At first we just weren’t sure we could pull it off. We were winging it and figured the whole flash mob idea would be an experimental thing. Before long, though, it turned into this very neat project, and all of our friends and family, those we told about the idea, wanted to help.

  So we put the word out, and suddenly we had twenty people who wanted to choreograph and teach us the dance. Then a friend of a friend who worked as a DJ offered to mix the music for the event, and we chose The Black Eyed Peas’ “Pump It” and Lady Gaga’s “Born This Way” because both were really fun songs to dance to. Before long, Flash Mob America, an organization that specializes in putting these kinds of events together, contacted us and offered to help. Everything just seemed to fall into place, and before we knew it we were a month away from the event and everything was done. We had actually pulled it off, and we could hardly believe it.

  It was such an exciting thing to think about. We weren’t professionals, but we had managed to put together this amazing event. Not only that, but through planning the flash mob we had actually learned a great deal about our foundation—our goals, ideals, and what we wanted to do—as well as how foundations in general work. Because we had never been in the business world, the flash mob event was our first introduction to something that had never really been our strong suit.

  The other important thing for me was to make sure that the event was fun. Fundraisers are usually so stressful, but I wanted this to be something where people could just dance, chill, and have a good time. When we were looking for a location, I really hoped we could snag the Santa Monica Pier, but the legal restrictions involved were just too much. Our next choice was Santa Monica Place Mall, which turned out to be a great decision. Even now, friends tell me that they are having birthday parties there just because it was where we decided to hold this event, so I think we’ve given the mall a ton of business.

  By then, Fox News had learned about my story and had decided to document some of the things I was doing, and around three hundred people—a lot of the same friends and family that had visited me while I was in the coma—wanted to dance. Suddenly our experimental promotional event was something much bigger than we had imagined.

  It was all such a neat experience. On the day of the event we performed the routine twice, even though I still wasn’t completely healthy after my hospital stay. The first time through was exhausting, and by the end of it I was panting so hard I could barely breathe, but I wanted to do it again. We even had friends who volunteered to film it and create videos—all part of the push to get the word out about the foundation.

  Of course, not everything went perfectly. Whenever you put something like this together, especially when television and public attention are involved, there is bound to be some drama as well. Our experience wasn’t any different. Although I didn’t know the details at the time, I knew something had gone wrong between my parents and one of the groups helping us, and it was hard to watch because suddenly this amazing event had a shadow hovering over it. It was even a while before we could use our own footage from the event, which was really disheartening since that was our entire plan for promoting the foundation in the first place.

  Because of that experience, there was definitely a lot of negativity during a time that should have been a huge victory celebration, but then my parents and I started to realize that things like this come up when you have a foundation and are working with other people—it’s not always going to be fluffy and happy. However, what really counts is how you handle things when it gets rough—and it definitely got rough for us for a while. Although it was all eventually sorted out, there have been a few other times since then when similar incidents have happened, and it always makes me wonder how people can do things like that. Our foundation is nonprofit. We’re not trying to take anyone’s money, and we’re not trying to be corporate, yet some people want to make it into that.

  The entire situation tested all of us, especially in how we handled the bigwigs and their offers to give us money in exchange for doing things a certain way. Sure, it would mean more funds for the foundation, but if it compromised what we were trying to do then was it really worth it?

  It wasn’t.

  To be honest, I had no clue how big our foundation would get. However, it’s definitely growing, and that can be a little scary. I don’t know what’s going to come of it, and sometimes other people don’t have the best intentions. Being a fifteen-year-old in the business world is weird, and it can put me in the tough position of having to be an adult and saying, “No, this doesn’t feel right. I don’t want to make a deal with these people because it goes against my morals.” It takes a lot to be able to stand up and say that, but if something doesn’t go along with what you believe, you have to say no. There is no compromising.

  And, honestly, all of this makes life a little strange. When my friends call and ask if I want to go to the mall or the movies, I sometimes have to say, “I can’t. I have a business meeting.” It makes me feel so mature, but not necessarily in a good way, more like I’ve missed my teenage years—even though I know I’m only fifteen and still have many more teenage years to go. It can be hard to find a balance between everything, because I am so passionate about the foundation, but I also don’t want to be an adult who wishes I had enjoyed my childhood more. I don’t want to have any regrets.

  Moving Forward

  the smaller moments of negativity aside, the foundation has been an amazing thing in my life, and the response we’ve received from other people around the world has been fantastic. Much like the flash mob event, the foundation has grown into something so much bigger than anything I could have imagined.

  Cystic fibrosis is the number one genetic illness in the world, but there is no government funding for it. Because of that, all of the donations made usually go to finding a cure, which is great, but it doesn’t really help families and kids living with the disease here and now.

  Because of this, our foundation has started to take on a lot of different roles. We have the CFU—Cystic Fibrosis University—to help kids and families learn how to live with CF. We have tips and tricks on everything from how to deal with mean nurses to how to handle certain procedures and surgeries to things you can do when you get bored in the hospital, all the parts of coping with daily life.

  We also have funds for families that have been in the hospital longer than twenty-one days. When your child is dealing with CF, you are bound to end up in the Pediatric Intensive Care Unit (PICU) at least once, and usually for a long period of time, like when I went into my coma. I was really lucky, because, through my
Facebook page, I had several thousand people around the world who were praying for me and sending my family money to help support us.

  Unfortunately, very few children have that level of help. As a result, parents can spend months at a time trying to be with their seriously ill child, but they still need to go to work and pay the bills. How can they do that, though, when they’re sitting at someone’s bed side?

  I really wanted to find a way to support families in that kind of a situation. The funny thing is that my mom and dad felt the same way. In fact, they were really passionate about it because they were coming from a parents’ perspective. They knew what it was like to be worried about a sick child while also trying to pay the bills. Because we all felt this way, we started collecting donations to help fund just those kinds of families, a way of helping them make their car or house payments for a few months so that they could focus on helping and supporting their CF kids.

  I was so excited to see how many people could actually contribute, and all of the assistance we’ve received has also helped us start a family support system—matching newly diagnosed families with more experienced CF families over the internet. It’s all part of this amazing thing that has developed not only from my coma but from my CF in general.

  The most surprising thing to come from all of this, though, is my speaking career—going out to schools and other organizations, including a TED Talk, in order to speak about my experience with CF and the foundation. It’s not even a career necessarily, just something I love doing. It helps people everywhere learn about our foundation and what it’s like to live with CF.