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.

Finding Home and Finding Hope

Last night I got to see Cecilia Knapp perform her one woman show, Finding Home, for the second time. It’s a show that discusses some of the really big stuff, like family, growing up, loss, suicide, and hope, and again, I was completely blown away. She’s an incredible writer, an incredible poet. It’s a fantastic show and if you’re able to see it, you really should.

This post could easily be a list of reasons why I love Cecilia, and her writing, and I’d quite happily write that but that wasn’t why I wanted to write this post. I wanted to write this post because she’s doing something really important. She advocates using writing, and creativity in general, to share stories and to help us cope with the things that happen to us, and this is something I’ve always really thought too. I think it can change everything; it certainly has for me. Writing has given me a way to make intangible things tangible and process things that had always felt too big to think about. I can’t say it better than Cecilia does here, in her TED Talk:

And on the other side of that, I also want to highlight the power of art and words, and the effect they can have. I’ve been in a pretty bad place for the last few months and I’ve really struggled with feeling hopeless. But listening to those words, it kind of felt like all of the colour had rushed back into my life, all of the feeling back into my body. I felt alive again. And that was amazing.

Of course, one experience can’t alleviate depression but what is change but a series of experiences? And regardless of whether or not this feeling lasts, it won’t be any less special if it doesn’t. I’ll keep the memory safe and replay it whenever I need to remind myself of that moment, that feeling. Given this experience, I’m even prouder that this blog’s title was inspired by this show.

You can find out more about Cecilia and her work here.