Claire Wineland spent nearly every hour of her two decades alive preparing for the end.
The California native was diagnosed at birth with cystic fibrosis, a genetic condition that overloads the organs with an excess of mucus. The illness meant a life of painful treatment, hospital stays and likely a premature death. But instead of wallowing in her situation, Wineland used social media platforms, like Instagram and YouTube, to pipe out the difficult details of her life to the public. Her videos and posts pulled in millions of viewers drawn to the magnetic teenager’s plucky humor and candor about living on the edge of death.
“Everyone is always surprised that we go to school, too, and live normal human lives. When you’re talking to someone who has a disability or has an illness, expect that they live lives like yours,” Wineland explained in a January 2015 video titled “Tips for Interacting with a Sick Person.” “Or, like, that we’re happy. I do get happy about things, and that shouldn’t be a big deal. Expect that people who live with an illness are gonna be happy about stuff, too. It’s not like we walk around like dogs with our tails in between our legs all the time.”
But the end with which Wineland has publicly grappled for years arrived over the weekend. In recent months, the 21-year-old’s health had taken a dramatic downward turn, prompting Wineland to opt for a double-lung transplant. According to a statement issued by her foundation, Wineland was recovering from the procedure when she suffered a massive stroke on Aug. 26 because of a blood clot. On Sunday, Wineland was taken off life support.
“After a week of intensive care and various life saving procedures, it became clear that it was Claire’s time to go,” Laura McHolm, the chairman of the Claire’s Place Foundation board, said in a statement. “She was not in any pain, and the medical staff said it was the most peaceful passing they had ever witnessed.”
By Wineland’s own account, she spent nearly a quarter of her life in the hospital because of cystic fibrosis, or CF.
“When I was born, I had a life expectancy of 5 years old,” she once explained in a September 2015 video. “And then, it moved to 10 years old. And then, it moved to 13 years old. And then, it moved to 18 years old. And now, it’s currently at 19 years old. And every single time that I get close to that point where I’m supposed to die, there’s a new technology that comes out, new medicine, new ways of treating cystic fibrosis. And then, presto, I live for another five years. But, really, at the end of the day, I can’t believe what the doctors say. But I also can’t believe it’s going to be OK.”
As Wineland recounted in a 2017 TEDx Talk, a routine surgery led to a blood infection when she was 13. “I went into full-on lung failure,” she explained. “I ended up being in a coma for three weeks. I barely, barely survived. I flatlined once in an elevator – which, horrendous place to flatline. Like, talk about a crippling fear of elevators for the rest of your life. I’m never going to get over that!”
Wineland credited the support of her friends and family with helping her pull through. But she also realized many others dealing with the condition didn’t have the same emotional and financial infrastructure. “It’s an incredibly isolating disease,” she said in her TEDx Talk. In response, Wineland founded Claire’s Place Foundation, a nonprofit to provide support for cystic fibrosis families.
Throughout her teens, Wineland’s YouTube videos offered an intimate look at her life. The videos, including “Dying 101,””What It Feels Like to Die,””How the Oxygen Tube Works,” and “Perks of Going to the Hospital,” combined humor and Wineland’s upbeat persona. The videos also put a human face to the condition’s ups and downs, while plowing headfirst into difficult topics, like death and health.
“I never want to be a sick person that just talks about sick person things,” she said in a recent clip. “Very few people can relate to what it feels like to be slowly suffocating all your life and needing new lungs. That’s not a normal person issue – thank goodness … For me, at least, the point of sharing everything I’m going through isn’t to make you all feel as if your lives are not as equally insane as mine is. Cause maybe on the surface they’re not, but fundamentally we’re all in the exact same boat with this.”
Wineland’s social media presence made her a much sought speaker, and she traveled widely to give talks and work with her foundation. She was featured on “The Dr. Oz Show” and CNN. Seventeen Magazine dubbed her one of the “Power Teens” of 2016. She wrote a best-selling book. Glamour Magazine named her one of the College Women of the Year in 2018.
However, as Wineland revealed in a video from last May, the professional life she had been able to carve out had begun to suffer due to her condition.
“Over the past six months or so, my health has declined dramatically – just took a friggin plummet,” she said. “I can’t physically do the things I used to be able to do. I can’t swim. I can’t be off the oxygen. I can’t hike. I can’t go on walks. I can barely take my dog on a walk. If I miss any treatments, I’m screwed. If I miss pills, I’m screwed. I have to be in the hospital a lot more. I have to be on IV antibiotics a lot more. I’m pretty much on a very tight leash about what I can actually manage nowadays.”
The turns in her health prompted her to seek the lung transplant, she told viewers: “Transplant for me isn’t about getting new lungs. It’s not about being healthy. It’s not about fixing myself. For me transplant is about what it means to choose to live.”
More than 8,900 supporters helped Wineland raise $265,000 on GoFundMe to pay for the cost of the procedure. On Aug. 26, at 5:30 a.m., Wineland’s phone buzzed with a call from the hospital in San Diego that an organ match had been found. “I could have new lungs TODAY!!” she posted on Twitter shortly before the operation.
Following the transplant, she suffered a stroke.
“In Claire fashion, she is an organ donor,” the foundation said in its statement. “Claire’s remarkable family were so happy for the other families that were now getting the calls that the organ they had long been waiting for was now available for transplant. They had been on the receiving end of that call just one short week ago.”