Claire Wineland, 19
Wineland was diagnosed with cystic fibrosis (sometimes shortened to CF) when she was born. Since then, she's founded a nonprofit, Claire's Place Foundation, Inc., which provides support for children who have CF and their families. She's toured the country as a TEDx speaker, raising awareness for the disease.
Describe your illness to me in your own words.
"Cystic fibrosis is genetic, meaning you’re born with it. It causes your mucus to be incredibly thick, like tar. It builds up in different organs and causes different problems. In the lungs, it creates a lot of infections. In the sinuses, you have chronic sinus issues. It shut down my pancreas. It makes my digestive system slow. It can hurt your reproductive organs. Yadda yadda yadda. It’s all caused by an imbalance of sodium. Your body can’t process sodium properly, so it just continues to make it and get thicker and thicker and thicker. CF is progressive, so as you get older it gets worse. It’s also terminal. There’s no current cure or any cure that’s a ‘for sure.’ So for people who have it, it ends up killing them before they get better."
How does it affect your everyday life?
"It’s a very strange illness. It’s not like other illnesses where there’s either one medication that fixes it or doesn’t. It’s so incredibly time-intensive and energy-intensive. I do four hours of breathing treatments a day, I’m on 50-some medications right now that are always fluctuating. I do shots. I do inhaled stuff. I’m in and out of the hospital. I’ve spent around a quarter of my life in the hospital. It’s kind of like having a part-time job. You have to have a bigger bandwidth to be able to deal with taking care of yourself, plus all of the other interesting facets of being a human being and trying to make it in the world. It’s not necessarily that it makes life worse, but it definitely is a lot more to think about."
How does your diagnosis impact your view on life?
"CF has greatly, greatly impacted my view of life and how we deal with suffering and how we deal with pain. The truth is, none of us like to deal with pain very much. We don’t like to deal with our own and we definitely don’t like to deal with other people’s pain. So what we do is we come up with this belief that, when someone’s suffering or when someone’s going through something challenging, it automatically means that their life is going to be less enjoyable than everyone else’s. Especially when we see people who are sick, the only conversation that goes on around that is, ‘Oh, when are they going to be healthy? Maybe one day, when they’re healthy, they can live their lives and they can have a normal, good life,’ instead of making the conversation [more like], ‘They might be sick their entire lives.’
"You can actually live a complex and beautiful life while going through pain and suffering. I don’t think I would have realized that as quickly as I did as a child if I hadn’t been going through CF and if I hadn’t been going through these experiences that everyone in my life told me were horrible and awful and they were so sorry for me. I was living a life I was incredibly proud of. I was getting to travel and speak and work on a nonprofit and be able to help people. I was in heaven as a kid growing up — and I still am. That’s not in spite of having CF at all. It’s not like, ‘Oh she has this horrible illness but makes the best of it.’ No, it’s my life. It’s complex and there [are] shitty parts and there [are] beautiful parts. I’m so grateful that I got to come to that conclusion through CF."
What's stayed the same? In what ways does your diagnosis not limit you?
"It’s up to me at the end of the day. Sure, logistically, it limits me from, like, hiking mountains (laughs). I can’t go climb Mount Everest — that’s fine. But at the end of the day, we decide how things limit us. People do this in their regular lives whether or not they have an illness. They let their situations limit them. It’s almost like we learn to pity ourselves, like, ‘Oh, we’re going through this or that so we don’t have to try harder, we don’t have to do more, we don’t have to be more because we’re going through this hard time in our lives.’
"They take it as an excuse to not. I think the whole ‘how does your illness limit you or how doesn’t your illness limit you’ is a weird way of talking about it for people who are sick, because there is the logistical side of it. There is the health side that you always think about, but at the end of the day, if you push harder, if you work harder, if you do more, if you try and be more, you can do things that other people couldn’t have even dreamed of."
What are you hoping viewers learn from watching the show?
"Sick people’s lives are complex and they’re intricate. It’s so much more than ‘are you sick or are you healthy?’ There’s so much more to ask and look at and examine in a person’s life that has nothing to do with them dying or not...there’s always a part of me that wants people to feel, when I tell my story, is that they’ve kind of been wrong. They’ve been wrong about what determines a good life. They’ve been wrong in thinking that if your life is shorter than others’ that means it’s less than or less important. From where I’m standing, the length of one’s life has very little to do with its impact and with its quality."
What are your main hopes and goals for your "last days"?
"My goal has always been to go to school and become an anthropologist, but that’s going to take a lot of time and energy and help and you never really know with CF where you’re going to be month-to-month. I know what the end goal is. I know I want to do that. I know I want to make enough money to start my own hospital. I want to do all this crazy stuff, but at the end of the day, my biggest hopes and dreams are to just be able to — I mean, it sounds corny — but just be able to live life slowly. Everyone talks about their bucket lists and what they want to do before they die and how they want to cram it all in, but the truth is I just want to have the luxury of living my life slowly and to be able to enjoy waking up in the morning, making a cup of tea, reading, and just slowly living like everyone else does."