Venice Beach, CA -- One of our favorite winners from last year's Cannes Lion was the Breathless Choir video. In it, Phillips brought together a group of people who live with breathing challenges, like COPD and cystic fibrosis. For that group, even catching a breath can be difficult, let alone taking in a chest full of air and singing out loud. But by the end of the video, that's exactly what they did.
A talented singing coach worked with all 18 participants to teach them new breathing techniques that allowed them to sing. Then he took them to the big stage of the Appollo theater in New York to sing, of course, Every Breath You Take by The Police. Friends and family were delighted. Audiences around the world were brought to tears.
At the very front of that stage was Claire Wineland. She's 20 years old and has lived her entire life with cystic fibrosis. The doctors tell her she may have as little of a year to live. But, she's not focused on dying; she's much more interested in living.
Wineland is on a mission to normalize sickness. She wants to show people how to live while dying and teach the people around them how to better support them.
In a recent CNN story that Dave Sonderman sent our way, Wineland said she has to train people to feel comfortable around her. "I can't just expect people to know what to say," she says, "I have to make them see me as more than my illness."
To do that, Wineland has been taking to the stage and the smartphone camera since she was 14 years old. She's published a whole host of videos and posts created as part of what she calls her Clairity Project.
"So, I'm dying", she says in one CW special called My Last Days.
*Pause*
"...faster than anyone else."
And, she's not wasting a day she has left.
Wineland has been in the hospital for nearly a quarter of her life. She's never that hold her back. As a child, she played hide and seek with the nurses. As a teenager, she started a foundation to help families who couldn't afford the massive costs of cystic fibrosis care. As a young adult, she's set out on a mission to teach people about living well while dying -- and show the people around them the right ways to engage, support, and just talk to them.
Why it matters:
Wineland wants to normalize sickness.
She told CNN, "What happens when you have an illness where you're never going to be healthy?" Does that mean I'm never going to have a life? Am I never going to do anything or be anything other than a sick kid?"
She's always found it strange and uncomfortable that people treat her with pity. They say, I'm so sorry or offer bizarre diet advice instead of being interested in the rest of her life.
Wineland wants people to be able to live full lives in the time they have -- without the sad eyes and uncomfortable accommodations of the well meaning people around them.
That's critical in a time when so many once-fatal diseases have become chronic conditions. Wineland has lived 20 years with CF. With advances in diagnosis and treatments, tens of thousands will live that long and longer with AIDS, cancers and and COPD. Shouldn't they all have the best life possible?
