Remembering Claire Wineland

I couldn’t not acknowledge that Claire Wineland died on Sunday. I still don’t really know what to say; my emotions are all over the place. But I did want to say this: I might not have known her in the traditional sense – we never met and our relationship consisted of a few interactions on Twitter – but she deeply inspired me and therefore meant a lot to me. I will miss her tremendously and my thoughts are with her friends and family. She was so, so special and her impact is on-going, like the ripples you see when you throw a pebble into a pond.

So, with all of that said, I wanted to share one of her TED talks. She talks about living with Cystic Fibrosis, how hard it is, and how living with an illness can affect your perspective, as well as how people treat you. She’s an amazing speaker.

“You can have a painful life, you can suffer, you can experience what it feels like to be a human being – all those messy and gross emotions – and yet you can make a life for yourself that you are very, very proud of.”

“I wanted to share the fact that you can suffer and be okay. You can suffer and still make something. That 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, out of the embarrassing moments and the painful moments. It’s what you make and what you give from that place.”

She talks about reading a book by Stephen Hawking as a young teenager and learning about space and suns and black holes. Her enthusiasm makes me laugh out loud (and then cry). And that led her to learning about Stephen Hawking himself and the disease he lived with and all that he contributed to society anyway. He was her first role model.

She talks about how she questioned why she had to work so hard just to stay alive and how she was desperately looking for something to contribute, something to give her life meaning. She wanted more than just surviving. And then, at thirteen, she almost died and went into a coma that no one thought she’d come out of. But she did and she was just blown away by all the support she received. That made her realise that that is not the case in many families living with Cystic Fibrosis and so she created her foundation, The Claire’s Place Foundation, to assist those families.

Six years on, she was struck with the realisation that she’d become the person that she had been looking for, someone to look up to who was sick and still contributing to the world. She was using her experience to give something and she was living a life she was proud of, that thirteen year old her would be proud of.

“And that’s all that we can have in life. Because the truth is, it’s not about being happy, right? Life isn’t about just trying to be happy. Honestly, happiness is a Dopamine in the brain. If I was to sit here and tell you all to just be happy, I’d just tell you all to go smoke a joint and listen to Bob Marley and just call it a day. We don’t need any of this TEDx stuff, you know? 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’s ever gonna 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’ve given because that’s so much more impactful, so much deeper than whether you’re happy, or content, or joyful. It’s okay to feel pain. In fact, if you can actually experience it without judgement, without, you know, trying to fix anything. Nothing’s wrong with any of you. Nothing’s 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’ve been able to make something and give something to people from it.”

In some ways, it’s hard to watch because it’s devastating to see her so engaged and dynamic and thoughtful and funny and know she’s not here anymore. It’s hard to watch her talk about surviving the odds, surviving the coma she was in at thirteen, knowing that she didn’t survive the odds this time. But at the same time, this video is a tiny piece of proof amongst all the noise that she WAS here, that she WAS so engaged and dynamic and thoughtful and funny.

As I said, I will miss Claire immensely but I’m incredibly grateful to have videos like these to watch on the hardest days.

‘What It Feels Like To Die’ by Claire Wineland

I found this video a little while ago and I’ve been thinking about it ever since. Claire Wineland talks about her experience with death in an incredibly thoughtful and insightful way. Death is a subject that I’ve always found really hard to talk about (even think about, to be honest) so I wasn’t sure what to expect when I clicked on the video, or even why I clicked on it. But I’m so glad I did. Claire is very eloquent and I was very inspired by her honesty and sincerity. This video hasn’t solved my anxiety but it feels a little less blinding. I guess it’s validated my fear, made me feel like that’s okay. And I think some of her sense of wonder has rubbed off on me a bit. It’s really worth watching.

Some quotes from the video:

  • “What I am opposed to is the notion that you can do death properly.”
  • “You can’t just let go. Because the whole point is that, when you’re dying, you should want to be alive. Because you’re losing every single possibility that was ever in front of you. You’re losing the person you could’ve become, the things you could’ve done, the things you could’ve made with you life, you’re losing that. And no matter how spiritually enlightened you are, or how many times you’ve thought about death and think you’re okay with it, you will grieve that when you’re dying. You will grieve the life that you could’ve lived otherwise and there’s no way to get around that.”
  • “The whole point of being alive is that you ARE alive and that you can make something with this.”
  • “We’re literally the manifestation of some kind of underlying brilliance to how everything works.”
  • “I don’t think that people realise that you’re not supposed to go peacefully.”
  • “The truth is the whole point of dying is to be scared, because that means your life meant something to you. You should fear dying. You should be terrified of it… Because life does mean something.”