A video went viral this week, telling the story of a young woman named Claire Wineland. She has cystic fibrosis, a chronic and terminal illness that causes the body to produce excess mucus, which coats internal organs and ultimately stops them from functioning. According to the video made available by Circa, Claire's life expectancy is about 21 years—she is 19.
What’s striking about the video is that this isn’t a sob story. Wineland cheerfully and positively speaks about her impending death. “Hi, my name is Claire,” she says in the video. Breaking out into a smile, she continues, “I have cystic fibrosis, and I am dying—faster than most people.”
“I can be sick, and yet I can travel the world and be a speaker and do whatever I want,” she says. “You can be in pain and yet you can see beauty, and that’s what makes life so incredible.” But it’s not just being able to get by, for Wineland either; she also sees how her condition can even widen her life. “The people who have been through the most are the people who have the most to give,” she says.
What’s unique about Wineland’s mission is how she aims to show the world that life with a fatal chronic illness need not be a funeral march.
As a fellow chronic illness sufferer—albeit with a nonterminal illness—I salute her courage and love of life. I’ve suffered from asthma since the age of 2. One afternoon when I was 17, I was having an asthma attack that was a lot worse than usual. My mom panicked and rushed me to the doctor. He administered four successive adrenaline shots with no improvement; usually I’d be recovered within moments after a single injection. I was rushed to the ER in an ambulance, where I was immediately surrounded by an entire team of specialists who struggled urgently to help me breathe. I remember praying and struggling with all my might to take my next breath.
When I was recovering, I looked out the window and saw the wind in the trees. I noticed the first buds of spring. In these simple things, a feeling of joy and gratitude overtook me. Just knowing that I would be able to go outside again, that I would be able to partake of this world again, seemed too good to be true. This particular episode, and multiple similar episodes that would follow it, made me want to do more, be more, give more—to live more. I realized over time that my illness offered me a unique perspective on life.
I think that life is beautiful even with hardships, but not just that—I’ve come to think that life is beautiful because of the hardships. Not only can you be in pain yet see beauty, but in my experience you also see more beauty because you are in pain. The knowledge of what it’s like to nearly lose what is most precious—your very life—makes everything more meaningful, rich, textured, and beautiful. The awareness of the beauty helps you through the next coughing fit, the next round of medications, the next struggle to take a breath.
Growing up with asthma, I faced a lot of challenges. There were awkward inhalers to take, medications that tasted horrible and made me shake and lose my appetite. It all made me feel different, like an outcast. Often, people didn’t believe I was really sick, or they thought I brought my illness on myself. There were midnight visits to the ER on my birthday, but there were also Christmases where I felt energetic enough to go sledding. Later I got well enough to be able to begin slowly training for the cross-country track team. From this experience, I learned about self-care, dogged perseverance, and self-acceptance. Now I have lifelong memories of running through beautiful summer days and nights. Ultimately, I had to leave the track team because my asthma kicked in, but in that short time I told myself who I could be; I told myself more was possible than I’d ever dreamed. I wouldn’t trade that for the world.
Everyone suffers, and everyone dies. It’s just that those who are terminally ill have a more compressed timeline. Much of our culture holds up “live forever” messaging—whether in Top 40 songs or in face creams—and it can be easy to get caught up in superficial desires of youth, beauty, wealth, and ease. But like Wineland, I think we could benefit from thinking about our mortality a bit more. Because, like all things that make us vulnerable, death forces us to think about what matters.
Being ill early in life was a lesson in humility. It taught me to accept others’ help, to care for myself, and to love fully. The root words that make up the common term “compassion” are passio, meaning suffering, and com, meaning with. It’s precisely by “suffering with” others that we most profoundly witness their love for us and realize our love for them. Paradoxically, the natural process of suffering and dying can be a rich gift.
Wineland’s gift to us is that she, and others like her, invites us to witness power in vulnerability and be grateful for every breath we take.
*This article has been updated from its original version. The old version incorrectly identified the life expectancy of people with cystic fibrosis. Claire's life expectancy is mid-20s while the disease's average life expectancy is closer to 40, according to the Cystic Fibrosis Foundation.
Photo Credit: South Bay