I don't remember when or how exactly I found Claire Wineland. I just remember opening a YouTube video and watching a teenage girl, cannula strung under her nose, take a long sip out of a mug before announcing to the camera with a grin: "So, I'm dying."
This was a few years ago, somewhere in the year after I was diagnosed with type 1 diabetes, the year the reality of my own mortality was slapped violently in my face. And then I stumbled across this young woman with Cystic Fibrosis who had been living with this reality since birth, but she wasn’t angry or bitter about it. She was bright and funny and full of life.
I've followed her on YouTube ever since. I watched her videos, was concerned when they stopped suddenly, and happy when she came back with a new channel—her own this time, and no fancy editing or graphics, just herself and her thoughts.
A couple weeks ago Claire underwent a lung transplant. A week later I was sitting in the back of my dad’s car, scrolling through Instagram when I found out she’d passed the night before after a week trying to recover from a stroke after the surgery.
But this isn’t about that. I don’t want this to be about how Claire died. I’ve seen lots of headlines about how she died. Yes, Claire died, but she also lived.
I don’t think I realized just how important Claire had become to me until she was gone. I don’t have CF, and while t1d is hard, it’s nothing like living with CF. Still, I think it’s because Claire’s story felt like my story. I think her story felt like a lot of people’s stories.
In one of her last videos, she talked about not wanting to only make videos about her illness, wanting to be more than her disease, and though most of her videos were centered on CF, they really were about much, much more. They were about the journey we’re all on—the journey to find meaning and a sense of accomplishment in our lives, building lives we can be proud of and happy with.
I was going to try to describe some of her ideas about life and death and pain, but I think it’s best to let her do it herself. These are from some of her last few YouTube videos:
“I’ve never met anyone, no matter how successful, who’s okay and who doesn’t feel pain—a lot of it, and there is no way of living that can get you out of feeling the kind of despair of being alive. And even though that sounds depressing, to me it’s actually incredibly helpful, because once you let go of that need to rid yourself of things that are uncomfortable and stop trying to find things that are gonna make everything feel better, once you’re main decision making point is not based on running away from pain, then all of a sudden, you can actually do something of value with your life.”
“We believe that checking things off a list is going to make our lives worth living. It’s not. Giving something of ourselves is going our lives worth living.”
“We think that if something is right, and if that’s what we’re supposed to be doing in life, it’s going to feel good, it’s going to be easy, it’s going to make us feel happy. The things that are going to make your life something that you can really hold onto and say ‘look, here this is what I’ve done. This is what I’ve made. This is what I have to give.’ Those things are going to be the most painful things.”
These ideas weren't just words to her. I didn't know Claire, but I believe she lived them. Between her YouTube videos, public speaking, and the organization she founded, she gave herself again and again and touched thousands of people. I know she touched me.
Her words did and continue to help me deal with the mental dissonance surrounding my diagnosis. She believed you could be unbelievably sick and live a good life. She believed a meaningful life and a life of pain and struggle could co-exist. After she made the decision to try the lung transplant she said this:
“For me, transplant is about what it means to choose to live. Not in an ignorant way. I don’t believe that once I get lungs and once I’m better that everything else is going to be better. I don’t believe that it’s going to save me or fix me or make me anymore of the person that I want to be. I think that getting new lungs for me is a representation for everyone of what it means to choose to be here on this planet and choose to try.”
It feels weird that I’m not going to see new videos on Claire’s channel anymore. Only a couple of weeks ago I was watching her livestream on Instagram. It feels weird that I’m not going to get those notifications anymore. But I find comfort knowing that she lived the kind of life she wanted to, a life to be proud of.
She lived. Claire Wineland lived.