by Chynna Levin
I love both my parents and didn’t want to hurt anyone’s feelings, so the night before my surgery I remember saying, “If there is a higher power listening, please give me some kind of sign on which way to go.” Then when I started to get sicker after the surgery, there was a lot of talk about me going to stay with my mom, since my dad worked a lot and wouldn’t be able to be there with my all the time. Suddenly I couldn’t help but think that my downward slide was the sign I had asked for—I would live with my mother and no one would have hurt feelings. I figured that no matter what happened, that was the reason behind everything and that, eventually, I would get better and it would all be okay.
That was when I crashed.
Despite my downhill slide, I was feeling fine until suddenly, two days after the surgery, my oxygen dropped within five minutes. Ingrid, my old nanny and now a close friend, was with me at the time, along with my Grandmother Edie, and when things started to go wrong she panicked. This is where everything starts to get hard for me to remember, because the oxygen levels in my brain were so low that things around me began to feel incredibly slow.
The last thing I remember before completely cutting out was my mom arriving in the room. It was my dad’s day to come, and he wouldn’t be there until later that night, but she explained that while she was out driving she suddenly had an overwhelming sense that she needed to come to the hospital to see me. I thought, “Well, that’s weird,” and then I was out.
Over the next couple of days I flashed in and out of consciousness. They hadn’t intubated me yet, and I remember not really being there but not really being anywhere else either. I was in this state where I could hear voices, but it was a lot like it is in the movies—a feeling like I was fading in and out and snatching only pieces of conversations here and there.
At one point I came to and knew there was something really wrong. I thought, “Okay, I’m probably going to die now.” It seemed completely bizarre to me, because even though I had been very sick for two days, to me it seemed like only a few seconds had passed since I had crashed. I really started to freak out when my carbon dioxide levels went so high that they had to try and intubate me while I was still awake. I was frustrated because I didn’t understand what was happening, and for me, as someone who is always so on top of things as far as what medications I’m taking and the technical details of my procedures, not knowing what was going on around me was very frightening.
This was the first time I’d had to let go and trust the doctors, and it was incredibly hard for me. Although I don’t have any memories of it, afterwards my family told me that I started to scream and throw things, but all I remember is yelling for someone to talk to me and tell me what was going on.
That’s when I went into the coma.
Chapter 3
the coma
this is the part that a lot of people are interested in, but for me it feels strange to try and explain it because, from my perspective, I was drugged and half dead, living in this weird in-between place where I wasn’t sure if what I was experiencing was a hallucination or real life. I was constantly having visions that put me in the middle of strange places and adventures—like being on a sinking boat and having to be wheeled off to an emergency hospital wing in Alaska.
I could still hear the voices in my hospital room, but I couldn’t compute what they were saying. I knew there were conversations going on around me, and those conversations worked their way into my visions, translating from medical procedures into surreal adventures. I don’t know if it was the drugs or something else, but looking back on it now, I think it might have been a combination of both.
I remember there being doctors. I remember people saying things like, “I’m going to wheel you into this room now.” I remember these snippets of scenes in my head, and when I woke up and people explained to me what had been going on while I was in the coma, it seemed to all suddenly make sense.
For example, because I was septic I had developed a very high fever of 105. In order to cool me down, they packed ice around my body; but in my head, in my crazy dream world, I was going through the ice caps in Alaska on a tour with all of my friends and family—everyone was there because I was hearing their voices talking as they worked over me in my hospital room.
In my vision, we were all in Alaska on a big ship, but I kept bumping up against the ice and saying “Ow, can someone steer the ship better? I’m cold!” I had these kinds of crazy scenarios in my head, and when I woke up and people explained to me what had been happening, I realized that the visions were how my mind had processed the events taking place in real life.
Everything started to stick together once I woke up—what my head was doing and what was actually going on. But sometimes there were just voices and sensations, not visions. At one point they had to cut out my port-a-cath but they couldn’t put me under anesthesia because my body just couldn’t handle it. I remember hearing the doctors talking about it, and finally my main doctor, Dr. Randhawa said to me, “Okay Claire, I’ve never done this on any other patient, but I believe you can do it. If there is any patient that can come out of it, I think it’s you.”
I could hear the doctor saying this, but all I could think was, “Come out of what? What are you talking about?” And then suddenly I felt the pain. It was a jabbing pain in my thigh, and I didn’t know what it was. I didn’t know what they were doing because I couldn’t really see them. I could see what my brain was telling me to see, these wacky visions, but I couldn’t really see what my doctors were actually doing. I would just feel the pain and think, “Oh my gosh, that hurts,” but I wouldn’t be able to say anything—I was paralyzed. I couldn’t move or talk or scream, but I could hear the things going on.
Through all of this, my doctors were amazing—they became my heroes. It took me a while to relinquish control to them, to be able to say, “I am handing my life over to you,” but eventually I felt like I could take that step and let them try to heal me.
I think that was one of the hardest things I had to accept throughout the whole experience—trying to stop struggling and just letting them fix me. There was a point where I finally understood that I had to let go. I could hear everyone around me telling me to relax, to stay calm, and that everything would be okay. At first, all I could think was, “No, it’s not okay! I have to fix it!” Finally, though, I accepted it and realized there was nothing I could do. There was something wrong with me, something really not good, but in order to get better I had to hand my life over to someone else and let them do their jobs.
Once I had made that decision, I felt total peace. I didn’t have to worry about the outcome. This may sound maudlin, but I thought, “It’s okay if I die. I don’t have to hold on anymore. I am still going to fight, but I don’t have to control it. Whatever is going to happen will happen. I just have to keep doing my best.”
It was a very fine line I had crossed, but once I did I felt safe. The entire time it was this balance between, “Ow, it hurts! Make it stop!” and “No, keep going, keep going. Just a little further.” I think that was the big struggle for me while I was asleep—not knowing what was going on but trusting that others knew what they were doing and would fix me.
When I finally came out of the coma two weeks later, I was told that I’d had less than a one percent chance of surviving. In fact, they had put me on an oscillator, which is like a high powered ventilator on steroids, and no one with cystic fibrosis has ever come off an oscillator alive. When I look back on that and think about what was actually going on in my head and how my brain was processing all of it, it’s such a different experience from what people told me had happened.
Everyone around me was explaining how the doctors were trying to ease me off of the ventilator, but when I go back and try to pick through those memories—the weird visions I had in dreamland—all I can remember is running and knowing that I had to keep going. I was never sure why I was running or where I was going, but I had this overwhelming certainty that I just had to
keep going. Now it seems strange to hear people talk about how brave I was, because I didn’t feel brave at the time. When I was in the coma and experiencing these visions, all I could think was, “Keep going. Keep running.”
I had this weird moment the other day while I was watching a National Geographic special about a girl who was in a car accident and had a one percent chance of surviving. At the time, I thought it was really a strange story, but then I remembered that I had gone through the same kind of experience. Sometimes I just don’t identify with it, and I have to actually make myself remember that I was the one there, that it wasn’t happening to someone else. I was the one that was close to dying. I had to fight to come out of the coma. That wasn’t a different person, it was me.
I never thought I’d have to do that, especially when I was in the middle of it. I thought, “I’m never going to forget this, being in my head.” And now sometimes it actually takes an effort to remember that all of that happened to me. In a sense, it became this part of me that I detached from myself. In some ways that’s good, because I don’t want to dwell on it, but, on the other hand, I learned so much from the experience. It gave me a completely different perspective on life, and I never want to lose that.
There’s always going to be that balance between reliving it over and over again in my mind or totally detaching from it; and neither one of those things is something I want to do. It was an experience that I should remember and take with me, but it’s hard to do that without getting fearful and stressed out that it might happen again. That’s very challenging.
As I said, the entire experience gave me a new perspective on life. It helped me to realize that we are constantly living on this border between life and death. Something is eventually going to kill you, whether it’s a car accident or a plane crash or old age—in fact, you are more likely to die in one of those than of CF. I could just walk out my front door and get hit by an asteroid. We are constantly this close to dying, and realizing that creates a different way of thinking, one that is sometimes hard for me to explain to people who haven’t gone through it.
Knowing about that border makes it easier to live in the moment. You stop worrying. You stop stressing yourself out about things in the future. As morbid as it sounds, you’re not sure what the future could hold—that isn’t where you live. You are in the present, and you are always going to be in the present. For me, I look back on how I felt when I was seven-years-old, and I know I’m not as healthy any more.
I could be depressed by that fact, but then I think about four years from now, when the CF will have progressed even more, and I know I will look back on this time in my life and wish for this level of health again, so I need to enjoy it now, in the moment. I can’t worry about what happened five years ago or what will come in another five years. I need to be in the present.
When you start looking at life that way it changes the decisions you make. You start feeling safer because you are able to say, “Right now, I’m alive and I’m doing something amazing and fun. Even through the really rough spots, I know that I’m still alive, and as long as I’m alive I can keep fighting.”
For me, this experience was strange because, while I’d had a few near death incidents when I was much younger, they didn’t affect me as strongly as this one did. I think that’s because I was so young, I hadn’t really had a chance to live much of my life yet. When the coma happened I was thirteen and getting ready for high school. I had everything planned out, and then suddenly it all changed. Nothing will go back to what it was like before, and learning to live in the present has helped me realize that’s okay. It’s freeing, in a sense, because you finally understand that there is a world of possibilities out there if you keep fighting and stay in the present.
As strange as it sounds, CF itself has taught me so many things. I think of life as a toolbox filled with all kinds of “tools”—experiences, talents, and skills—that we collect along the way, and CF has filled my toolbox as full as it can possibly get. Despite what many people think about the disease, I consider that a blessing.
Chapter 4
the aftermath
although people sometimes seem to think that talking about my coma and what happened afterwards must be difficult for me, that’s not entirely true. It’s easy for me to explain the coma, but it’s hard for me to go back into the experience, so to speak. If I really concentrate, I can return to that moment. I can smell the smells and feel all of it, and that is slightly scary because being there was so different from my day to day life. Sometimes my mind automatically goes back to that moment, and I have to actually pull myself out of it, but that doesn’t mean I can’t talk about what happened to me or how it altered my life.
After the coma, my life changed in a lot of ways. Earlier, I talked about growing up with CF and the fact that I never felt like the stereotypical “sick kid.” I had a disease, but it was never really obvious.
The coma changed all of that.
I was in the hospital for four months recovering and had oxygen 24/7. I had lost all motor skills during the coma, so I had to learn how to walk and use my arms again. Although I finally got back to a point where I could live a mostly regular life, I was still obviously sick. I looked sick, and I think that was the biggest shock for me and my family. My CF had suddenly become the elephant in the room.
The biggest physical obstacle for me was the loss of my motor skills. Normally, when I’m in the hospital and I want to get out of my room, I just climb out of bed, set my IV pump to an energy saving level, unplug it, and walk down to another ward. At this point, however, my body wasn’t my own. I could barely pick up a fork without shaking and throwing it across the room. I wanted to get up, walk around, and be in charge of my health again, but I couldn’t.
After I was released from the hospital, I went to live with my mom, just like we had planned when I first started to go downhill before the coma. I know she was nervous. Although she was used to all of my treatments and medications, my medical supplies had suddenly tripled after the coma. Not only did I now have oxygen, but I needed a variety of other medical equipment we had never used before. I had gone my whole life experiencing CF one way and then BAM!, it was a whole different, and much more extreme, story.
For the most part, the entire experience seemed so strange to me because, in my mind, I had only been sick a few days. For everyone else two weeks had passed while I was in the coma, but I felt like things had changed practically overnight, so when I started work on rebuilding everything—especially my motor skills—it was a real eye-opener to see where I actually was health-wise.
I’m the kind of person who always wants to charge full speed ahead, but after the coma I had to stop. I couldn’t go, go, go all the time anymore. I had to actually play my part as a sick kid for a while, and that felt weird to me. I wasn’t used to dealing with it. My illness hadn’t been this prominent thing, and then suddenly it was the center of our lives for a year and a half before things really started to go back to normal.
I’m so lucky to have the most amazing support ever from my friends and family, but, like me, they were used to the old way, when my cystic fibrosis meant limited physical activity but not 24/7 oxygen. When they would come to see me after the coma, they wouldn’t say much, but I could see the shock on their faces at actually watching me have to use oxygen and looking and feeling so sick. Everyone was quiet about it; they didn’t want to just come out and say, “Wow, you look like crap.” They wanted to be nice and supportive about it, but I could tell they saw the difference.
I never went back to school, and I miss that a lot, but my health just won’t allow it. After the coma it was very frustrating because I had moments when I had to remind myself that I was still recovering. I’m used to always being on top of my game, and for the first time that wasn’t the case. I was the kid that everyone thought I would be—the sick kid—and my reaction to that was, “No, no, no! I’m not going to let this drag me down.” But I didn’t have much contro
l over it, over the times when I got healthier or didn’t get healthier. That was a huge frustration for me.
However, the physical obstacles weren’t the only differences I noticed. I generally try to see things with a glass half full attitude, and I had always been a happy person, but after the coma, for the first time, I felt like I had to work at being happy, where it had once come naturally to me. I had to actually put effort into being positive and okay with things, and that was a whole new experience for me.
As much as I appreciated the coma experience for everything I learned from it, I also just wanted things to go back to before, when I could be happy without putting effort into it. I still feel that way—that sometimes I have to work towards feeling positive. I guess everyone does—it’s something most people go through at one point or another—but this was the first time I’d had to face that feeling. It was a shock to me to find that I couldn’t always be that positive girl in my head anymore.
I actually had to do more visualization and force myself to meditate, which was a big deal for me because it had always come naturally. That’s when I started to get a little angry. It wasn’t as though I was mad at the world and wanted to run and hide—I was grateful for life and still loved it—but I had these little bits of anger, frustration, and disappointment that I’d never had before. Sure, I’d felt pressure over small things, but I had never experienced the frustration that everyone talks about with teenagers, that attitude of, “I hate life. I hate this world.” I had never understood feelings like that, but after the coma I could finally see where they were coming from.
The worst part was that I didn’t want to be like that. One of my biggest fears is that I’ll become that girl—the one that’s angry at everyone because she has cystic fibrosis. I’ve had such a beautiful life because of my CF and the things it has taught me, and I never want to be the angry kid, but after the coma those types of feelings kept coming up. Certain situations would bring them out, and for the first time in my life I started asking myself things like, “Why does it have to be obvious that I’m sick?” or “Why can’t people just talk to me about how they feel instead of always trying to be so nice?”