“If a cure came tomorrow I wouldn’t care because that has not determined the quality of my life . . . my suffering has given me so much.”
Claire Wineland said that: the spunky American chick who straight-talked her way into people’s hearts by sharing, warts and all, her journey with cystic fibrosis. She died on September 2, aged 21, after initially being told she’d live to 10.
Her life is being celebrated as a victory, not only because of the medical advancements that enabled Claire to outlive her own life expectancy, but because of her bold and brilliant legacy. Not to mention her uncanny way of talking about death without making you feel sorry for her.
Claire was determined to leave her mark on the world.
Knowing her time here was potentially short, she got to work on that goal early. Aged 13, she founded Claire’s Place Foundation to support children and families affected by cystic fibrosis. She received awards including the Gloria Barron Prize for Young Heroes, Fox Teen Choice Awards 2015, and was named Seventeen Magazine’s ’17 Power Teens’ of 2016.
But her voice has been heard and spread widely thanks mostly to her social media advocacy (a combined 220,000 followers on Facebook and Instagram), YouTube vlogs (another 288,000 subscribers there) and TEDx talks. In July last year, Claire gave a TED Talk titled ‘Don’t wait to be healed to start serving humanity’. And that line, really, sums up her life and attitude. Here’s some more from that talk, revealing the wisdom she acquired well beyond her years, demonstrating just how out of kilter our society’s attitudes can be around illness and pain.
Read this and then ask yourself, “Was Claire’s life less valuable because she was sick?”
“I do not do these talks, to say that it’s a walk in a park and to say that you have to just be happy in spite of it. It’s hard and it’s painful. . . I do these talks to make a point that you can have a painful life, you can suffer, you can experience what it’s like to feel like a human being, all those messy and gross emotions, and yet you can make a life for yourself that you’re very, very proud of.
“You can suffer and be okay. You can suffer and still make something. The quality of your life isn’t determined by whether you’re healthy or sick or rich or poor, not at all, it’s determined by what you make out of your experience as a human being.
“Life isn’t about being happy, life is a rollercoaster of crazy emotions. One second you’re fine, and the next second you feel lonely and despair and like nothing is ever going to be okay again. It’s not about emotions, it’s not about how you feel second to second, it’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’re giving.
“It’s okay to feel pain. In fact, if you can actually experience it, without judgment, without, you know, trying to fix anything.
Nothing is wrong with any of you.
Nothing is wrong with me.
I don’t care that I’m sick at all, genuinely.
If a cure came tomorrow, I wouldn’t care because that has not determined the quality of my life.
I’m not trying to fix myself.
My suffering has given me so much, and I have been able to make something and give something to people from it.”
Claire went on to compare her sickness to wine.
Wine is made from grapes that have gone through a fermentation process. In less fancy terms, the fruit rots and festers in order to produce the beautiful flavours we enjoy from the bottle later on.
“It’s very similar to the way that people see sickness,” she says.
“We view it as a curse because we don’t understand. . . we haven’t come to appreciate our own human suffering. But if we wait long enough, and if we enjoy it and if we go through life and try and make something of ourselves, maybe one day we can realise it’s actually a gift.”
Your life was exquisite, Claire, valuable beyond measure, and you gave us a gift by living it with heart. We pray that your message becomes the core of society once more. Every. Life. Valuable.
*All photos from Instagram, @clairesplacefoundation