by Chynna Levin
Sometimes it’s insane. I’ll be standing on the stage and will have to force myself to remember that this is me. Two years ago I was in a coma, and now I get to do these amazing things, speaking and inspiring people. I get to run a foundation. I am the founder of the foundation! I’m just a teenager, but I have all these crazy, incredible things I get to do with my life, and it’s all because I have cystic fibrosis.
Chapter 6
life goes on
now what happens? I have friends and family and this amazing foundation, but what, a lot of people ask, what is life like now that I’ve (mostly) recovered from the coma?
Friends
well, I have a phone for the first time in my life, so I’ve finally started texting. I’m a very social person, and I love spending time with my friends, so texting is just one more way I can keep in touch with them since I’m not in school on a daily basis.
Actually, I’m very lucky to have those amazing friends, ones who have supported me throughout the coma and CF in general. When I was younger, I remember all of my friends digging the fact that I had CF and accepting it. We even made up games around my treatments. For example, one of my treatment masks looks like a fish face, and when I was little we used to put the mask on and pretend to be fish while I went through my treatments. They made it fun for me, setting up sleepovers in the hospital when I had an extended stay and always making sure to be there when I came out of surgery.
Because I have such amazing friends, I didn’t realize until I was older that most kids with disabilities aren’t as accepted as I am. Many of them are mocked and bullied, which is shocking to me because I have always had so much support. However, there are tons of kids who commit suicide because they don’t have that same encouragement. When I’m with my friends, we sometimes joke around about my CF, but there is never any meanness in it. I’ve found so much love and support with my friends and family, and knowing there are kids who have to face CF without that kills me.
More than anything, I want to be there for them. However, like I mentioned at the start of this, CFers can’t get together, which makes having healthy friends all the more important. When you don’t have that kind of support, it’s terrible, and you feel even more alone, which is why I want to eventually use the foundation to connect CFers with healthy friends who can give them the encouragement and support they may not be getting from the kids currently in their lives. It’s just one more way the foundation could be used to bring people together.
School
even for me, with the amazing friends I already have, it can be tough to feel like you’re in the loop. As I mentioned, I’ve been home schooled for the last year. I’ve always been smart when it comes to my medical condition and knowing what’s going on with my health, but I’ve never really felt academically smart because I missed so much school as a kid. I’d be in class for one week and then out for another three in the hospital. It felt like I missed so much during these times, like how to do fractions, and I always seemed to be playing catch-up when I returned to school.
Because of this, I felt pretty stupid by the time I hit eighth grade and went into the coma. I was just so far behind in science, spelling, and reading. I never really expected to do great in school because I have so many other things going on in my life, but I wanted to at least be on the same level as the other kids. Since starting home schooling, I definitely feel like I’m getting a better education, but I really miss actually going to school. I get to see my friends when they visit, but since I’m not in class every day I do feel like I miss out on some things.
I especially don’t want to miss out on the high school experience. It’s like running a marathon but having to skip the finish line, “I’ve gone through all of elementary school, and you’re really saying that I’m going to miss out on high school now?” It seems so strange, because I’m the person schools call to speak at special assemblies in order to teach other kids about life, but I haven’t even been to high school! I don’t want to miss out on that experience, but I also want an education. I want to be academically smart and caught up for the first time in my life. I’m hoping that when I do go back to school, I won’t be the kid who is lagging behind but the one who has excelled.
Sometimes it also feels a little like I’m missing out on the teenager experience in general. Unlike a lot of my friends, I have to prioritize and consider, “Is going to the movies more important than making this video that needed to be finished a month ago?” Making those kinds of decisions is tough as a teenager, because a lot of the time I just want to say, “Forget it, I’m going to the movies.” But I can’t do that because I have so many bigger plans with my life. It just isn’t an option.
For my friends, bigger plans mean college. I have college on my mind, too, but on top of that I also have the foundation, and on top of that I have my health. I can’t make decisions lightly, and I can’t just decide one day that I want to go out and party. Not that I ever had any strong desire to go out drinking and partying—that’s never been my thing—but knowing that I don’t even have the choice when all of my friends do is strange sometimes.
Then, however, I see all the people I’ve helped or have moments when I realize how big and important everything we’re doing really is.
That’s when I know it’s worth it.
Why Me?
because my life is so crazy strange, a lot of people ask whether or not I ever wonder, “Why me?” And the truth is… I don’t. I know why it’s me. I know I have a purpose; I may not know exactly what that purpose is yet, but I am certain that physically and spiritually I have a mission.
Sometimes, however, I wish that I could be a little more oblivious. They say that ignorance is bliss, and to a certain extent I believe that’s true. There are kids out there who don’t have to worry about the Big Picture, and sometimes I wish I was one of them.
But I also think there are a lot of great things that can come from knowing why you’re here and that you’re meant to do something bigger. You don’t really lose hope or faith as easily when you have that certainty.
As I said, I don’t know exactly what my mission is yet. Right now the foundation feels good, but you never know, ten years from now they may cure CF and I’ll have a totally different mission. Or maybe my mission is something as small and insignificant as helping someone across the street. Maybe that person will go on to be president and stop a war—all because I helped them across the street. We don’t know the chain of events, but I do know that I am here for something bigger and that my CF is a part of that, for better or worse.
Public Speaking
part of that larger mission is something that I stumbled into unexpectedly—public speaking. Giving talks at schools and other organizations has given me the chance to not only spread the word about the foundation but also to tell others my philosophies on life and everything that living with CF has taught me.
Most of the time when people ask me to speak it’s about my history, how I got to where I am, and what my advice on life is. However, I was recently asked to speak at a friend’s high school on the subject of body image. I couldn’t do the talk because I had a big surgery scheduled, but I thought the topic was really interesting.
Being a teenager is rough because there is so much in the media about how kids should look and what their body image should be. Everyone wants to fit that image of perfection, but it just doesn’t exist in reality. If I take off my shirt right now, I have a giant scar running straight down my abdomen as well as visible scar tissue in my neck. I also have two scars along my ribs and a G-tube, which helps me get nutrients but looks like an alien probe, sticking out of my stomach.
I don’t have “the” stomach or “the” look, so when I was asked to speak I thought it was a great topic. I’ve spoken before about inner beauty, but this was more about how to deal with being a teen and having scars everywhere. If I’m going to be honest, there are times when all I want to do is wear a bikini, but it really makes people feel
uncomfortable. They stare and ask questions, and although I have no problems with answering those questions, I can tell that people just feel uneasy seeing the scars.
Sometimes I get angry that I can’t just be a normal teen, but then I realize that no one is really like that. No one has a perfect body, yet everyone is always so hard on themselves. I should be the last person being hard on myself since the reason I have these scars is because I have survived, but even I get self-conscious sometimes. However, if I didn’t have these scars I wouldn’t be healthy or even alive, and, in the end, being alive is so much more important than what other kids think of me.
That’s become a theme in my life. I speak on many different topics, but this kind of stuff—teenager stuff—is the thing that other teens want to hear about. They want to hear that they are perfect just the way they are. It sounds corny, but I want to be able to tell them that I am not the picture of beauty in any sense, and I’m not very healthy either. Because of that, however, I do not take my health for granted.
I hear about kids cutting their wrists in order to feel pain, or starving themselves, or puking after they eat just to be skinny, and it’s like a stab to the chest. I have worked my entire life to be healthy and to treat my body as best I can, but my body is never going to look like the people in the magazines. That’s because those people are photoshopped. To hear that kids actually hurt their bodies to look that way is terrible for me. I was born hurt, and I’ve spent every waking moment trying to be healthier and survive.
Philosophy
i mentioned earlier that I often get asked about my philosophy on life, and if I had to choose just one thing that’s been a theme for me, it’s that my illness isn’t the awful situation most people think it is. I recently learned that in ancient cultures and religions having an illness, or any kind of adversity in your life, was considered a blessing. It was a message from a higher power, an open door filled with opportunity. In fact, the actual translation for “problem” was “empowering situation.”
CF, and especially the coma, has been my very own empowering situation. Not only is it the reason for this amazing foundation that has brought people together to help others with the illness, but while I was in the coma there were people in Fiji and Israel who contacted my parents to say they were praying for me. How cool is that? How else but through my CF could I have ever reached so many people?
Alaska was meant to be a chill trip to help me relax after the coma, but it turned into this insane, empowering adventure. I had dinner with a senator and had the chance to ride in a helicopter. I was able to do so many wonderful things that I never thought I would have the opportunity to experience, all because of an illness that most people see as a terrible tragedy.
My entire life has been about helping those people understand how rich having a problem can make your life. There’s a saying that I love, “You will never truly get what you want until you want what you have.” When I first heard that, I didn’t agree. “Wait a minute,” I thought, “I don’t want what I have! I want more. That’s messed up!” But if you think about it, no matter what you have, you’re always going to want more. That’s human nature.
You may want a bigger house, or more financial security, or a cure, but sit down and ask yourself why you want those things. What about them will make your life so much happier? When you start to think like that, about what you want and the reasons you want it, you begin to see how you can get it with what you have—looking for ways you can make your current situation even more empowering and amazing.
All of this is not to say that dealing with a problem is easy. It is definitely hard, but the thing to remember is that anything you do can be hard. You can make the simplest, happiest thing hard. I’ve had times when the easiest chore feels like a knife being jabbed at me and other times when it’s not tough at all. But, in my life, something being hard and something being bearable are two completely different things.
When my doctor puts me on new meds or changes my treatment schedule, he always asks me, “Is this bearable? Can you handle it? Is this still at your threshold?”
Is it hard? Well, everything has kind of been hard. My life is slightly more of a struggle, at least health-wise, than most other kids. But that doesn’t make me want to give up—the question isn’t “Is it hard?’. It’s “Is it bearable?”
At the moment, yes, it is bearable.
There are certainly times when it’s tougher. There are days when I wish I could just not do anything, like that Bruno Mars song, “The Lazy Song.” In fact, one time, when I was having one of those days where absolutely nothing goes right, I was listening to my iPod when that song came on, and I suddenly lost it. I started yelling at my poor iPod, “I can’t just not do anything! I never get a lazy day!”
So of course there are days when I wish I didn’t have anything to do or days when I just want to be a teenager and not have to worry about adult things, but it’s never really been unbearable. I think I’ll know when it is, but I’m not there yet. I can bear through the hard days and come out on the other side.
To be honest, I think that giving up—knowing that I could have tried a little harder but didn’t—would be much more difficult than making it through my tougher days. Looking at things from that perspective makes me certain that, no matter how hard a day gets, I will keep going.
In fact, one of the messages that run throughout my life is that illness, whether CF or some other disease, doesn’t make your life harder. Remember what I said earlier about having one of “those” days, when nothing goes right and you just want to curl up and hide? Well, the truth is that everyone has those days. Having an illness, or any other problem for that matter, does not make things harder. That’s just life, and everyone has their own unique set of challenges. If I didn’t have CF, I would be a smart, regular girl. I have a loving family, amazing friends, and a beautiful home. I have a good life. For me, CF is my burden, and I have to deal with that.
I think a lot of people use an illness as a scapegoat or as an excuse to feel miserable, but, really, an illness should be an excuse to feel great. It can offer you so many amazing opportunities and benefits that you might not otherwise have.
In fact, when you have an illness or some other challenge in your life, the adversity is not actually the problem. The problem is when you don’t know how to handle that adversity, or when you don’t know how to handle it gracefully, or, most importantly, when you don’t learn from it. The challenge itself isn’t the issue; if you can’t learn from it and grow from it, that’s the real problem.
The hard part… that’s just life. The amazing part is how you get through it.
Being able to love what you have, even the challenges, and growing from it is such a gift. The key, though, is not to label things as good or bad. Illness, or any other problem, has always been seen as a negative, but what if it’s not? What if it’s the exact opposite? What if those people hundreds of years ago in other cultures and religions were right? What if your problem is really this incredible, empowering situation from God?
What if it’s your chance to make a difference?
When you stop to think about it, life truly is beautiful. People tend to get discouraged when they have problems to overcome, but, really, that’s the part to cherish the most.
That’s when you have the chance to get the most out of every second given to you.
So, that’s my life with cystic fibrosis. I guess if I wanted to get one message across with this book, it’s that I don’t want pity. This is my life, and it’s pretty incredible. Sure, sometimes I think it might be nice to be a “normal” teenager, but then I wouldn’t have had the chance to do any of the fantastic things that have made my life so extraordinary. Anything in life is what you make of it, so no matter what comes your way, cherish it and make something amazing from it.
For more information, contact:
http://clairesplacefoundation.org/
Support Families
Claire’s Plac
e Foundation Place Foundation is currently developing a program where families living with cystic fibrosis can communicate with each other and share their experience, strength and hope with newly diagnosed or isolated families looking for support.
Social workers at partnering hospitals will provide families with children with cystic fibrosis information about Claire’s Place Foundation, Inc. Families feeling uncertain and isolated will be offered support and information on how to work through the treatment and care process by other parent volunteers. Over the next 5 years, these programs may expand to include actual activities brought to the hospital for children and families to participate in, tool kits, local support groups for families and other groups for youth suffering of cystic fibrosis.
If you are interested in becoming a support family or are in need of a support family to speak with, please send an email to the address below, and we will respond with more information:
[email protected]
While we build our Support Families Network, please take a look at the following links as a beginning guide to community resources:
Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters—patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
http://www.cff.org
Cystic Fibrosis Patient Assistance Foundation
Assistance for affording medications and devices for managing CF
http://www.cfpaf.org
Cystic Fibrosis Services
Additional patient assistance programs for those without insurance coverage
