Claire Wineland’s path to resilience is inspiring and will change how you look at chronic illness. Welcome back to our Cup of Calm interview series, where we feature interesting people and experts, their journey to resilience, and their wisdom on…
Claire Wineland’s path to resilience is inspiring and will change how you look at chronic illness.
Welcome back to our Cup of Calm interview series, where we feature interesting people and experts, their journey to resilience, and their wisdom on well-being.
When she was 13, Claire Wineland started a foundation to help people with cystic fibrosis (CF), a progressive and terminal genetic disease. That would be remarkable for any tween, but for Claire—who was born with the disease and had just nearly died of complications from it—it was especially plucky. Though she’s spent nearly a quarter of her 20 years in the hospital and has had 35 surgeries (so far), Wineland’s outlook on life is uniquely upbeat. Wineland shares her secrets on staying resilient, embracing challenges, and becoming a professional schmoozer.
Q: How do you stay resilient in the face of your disease?
A: I don’t think of my disease as a burden. Just being alive, regardless of one’s circumstance, is incredibly challenging. Every single human being is dealing with a huge level of suffering. It’s an innate human condition. Growing up, I spent a lot of time in the hospital. I’d have the hospital room all decked out, doing arts & crafts, just being a kid. Adults would come visit me. They’d squat low and say, “I’m so sorry you have to deal with this.” And I’d be like, “No, I’m having a grand old time!” Finally, I started to hear about their lives. The more I started to talk to them, the more I realized that they were miserable. We’re looking at the wrong measurements. It’s not getting over your problems—it’s finding a way to use them.
Q: When you were 13, you started Claire’s Place Foundation to help people with cystic fibrosis. Tell me about it.
A: CF is a hugely taxing illness. After I recovered from lung failure and being in a coma [at age 13], it dawned on me how much support my parents—especially my mother—needed. She was a single mom with another kid. She was with me every single day in the hospital. She had to quit her job. On top of that, she had to find a way to pay her bills. I started the foundation to help her.
Once my mom was secure, I realized, “Wow, I’m actually pretty good at this!” The Foundation has grown every year. We provide grants for families who are dealing with extended hospital stays. We help them pay their rent, their car payments, bills—whatever they need covered financially, so that they don’t have to lose their home on top of losing their child.
Q: What keeps you upbeat and enjoying life, when it would be so easy for you to dwell on the negative?
A: When you feel something, you have to let yourself feel it. People mistake positivity with ignoring what’s there and what’s real. The truth is, anger, aggression, fear, pain, sadness—they are way older than we are. There is a way to feel something and not get stuck: by acknowledging what’s there and realizing that, fundamentally, it doesn’t matter. I genuinely don’t care that I have CF, because I get to travel the world as a public speaker. I have a dog I love (her pit mix, Daisy). I get to design hospital rooms. I get to be the person I want to be! Not in spite of my illness, but because of it.
Q: You’re partnering with Zappos to make hospitals more beautiful. Tell me a bit about this project and why you’re passionate about it.
A: There’s no reason why hospitals have to be terrifying, cold, and sterile environments. I’m focusing on redesigning hospitals to benefit patients, so that they’re a space for them to heal. We’re re-doing the Children’s Hospital in Vegas. The playroom is my baby: I’m going to bring the outside in by changing the lighting so it’s not fluorescent, but warm. It should be done by the end of this year.
Q: How do you balance your full life with the limitations that your disease brings?
A: I’m really bad at balancing taking care of myself and working. I tend to overdo the working and underdo the treatment. With CF, you have to do four hours of breathing treatments per day. They’re intensive and exhaustive. Then you have shots, pills, blood tests.
No matter how well I take care of myself, I have a terminal illness. But at the end of the day, what will I have done with my time? Just breathing treatments? Or will I have actually given something with my life? As much I screw up and am by no means a perfect patient, I’m really proud of myself. It’s up to everyone to find their own version of that.
Hannah Wallace is a Portland-based journalist and editor who writes about integrative medicine, sustainable agriculture, and wine for Food & Wine, Vogue, Fast Company, and other publications. You can follow her on Twitter or Instagram at @Hannahmw23