TW: terminal illness and death.

Today is what would’ve been Claire Wineland’s twenty-fifth birthday and even though she died in 2018, I still think of her often. I wanted to do something for her birthday and since I hadn’t yet watched the documentary about her that was released after her death, I decided it was time to watch it, even if it would make me cry (not much of a spoiler: it did). She was an incredible person and it breaks my heart that she’s no longer here, that she didn’t get the chance to live a life she fought so hard for and saw so much potential in.

As I said, I wanted to honour her birthday so I sat down and watched the documentary; here are some of my thoughts…

It’s a beautifully made documentary and a beautiful tribute to Claire and the message that she dedicated her life to sharing with people. You get a real sense of her: she’s so articulate and eloquent but she doesn’t take herself too seriously (and ‘Little Claire,’ as she refers to herself, is so cute). So much of what she said was so poignant and moving and, as always, I felt deeply inspired by her words. It also gives you real insight into what living with Cystic Fibrosis is like, as much as you can as someone on the outside, and while her experiences are very specific to Cystic Fibrosis, I could also see a lot of broader parallels as a person with multiple disabilities.

I found the second half (approximately) especially emotional because I remember experiencing it in real time: watching her videos, donating to her gofundme and watching the total rise and rise, watching her live on social media when she got the call from the hospital for the transplant, waiting for news, and then finally hearing that she’d died. I remember it all so vividly. And seeing the video about needing new lungs now, hearing her say, “There’s so much more I wanna do,” makes me so deeply sad because everyone was so hopeful throughout the transplant process but then, suddenly, it was over and Claire was gone. There was so much she wanted to do and she truly saw how much she could do in this world and she didn’t get the chance; that still makes me so very sad.

The montage at the end was gorgeous and the ending was perfect. As I said, it’s beautiful and I feel like, as familiar as I was with Claire’s videos and therefore her approach to life and so on, I walked away from the documentary with a better understanding of her and her message.

There are so many great quotes throughout the documentary but here are a few that stuck out to me…

• “The truth is: people who are sick, people who have suffered have something beautiful to give to the world. So, for me, it was really important to see people who were sick who were thriving… It’s important to have people who are sick who are actually living full lives so that kids like me, like Little Claire, doesn’t have to feel like all there is in the world is being someone’s pity case. You know, that there’s a life for her to live. And that it’s going to be wonderful.”
• “Innovation doesn’t happen because there’s some person who’s in a great circumstance and everything’s going well and they just get on a roll and they make something for the world. Innovation happens, art happens, because of suffering.”
• “We’re all just trying to not feel so alone and to feel like we have something that is worth giving.”
• “There’s this notion that we go through life with that, if we’re just better… If we just do more, if we just fix ourselves more, if we become better people, if we get healthy […] Once you’re healthy, then you can live your life. Once you’re healthy, then you’ll be happy. Once you’re healthy, then you’ll be okay. And we all go through life like that, not just sick people… all of us. Like, once we’re rich we’ll be okay; once we’re in love we’ll be okay; once we have a family, we’ll be okay. Health itself is never gonna make your life better but for some reason, people don’t wanna frame it that way. If I was to sit here and say, ‘money doesn’t equal happiness – it’s what you do with the money,’ you’d be like, ‘Yeah, completely.’ But if I was to say, you know, ‘being healthy doesn’t matter – it’s what you do with the health…’ People don’t like hearing that necessarily.”
• When talking about her near death (and actual death) experience: “And after the terror left, there was this grief, you know? Like, I grieved how much potential there was in me and how much of that I didn’t utilise in the time I had. And I grieved it. It wasn’t fear. It wasn’t, like, ‘Oh god, I don’t wanna die.’ It was, like, ‘Wow. There is so much that a human being is capable of doing and I won’t be able to do that.'” [This moment made me cry and seeing that the memory moved Claire to tears as well made me so incredibly sad and touched that it was something they shared with us; it was very moving and had a big impact on me.]
• “For me, what purpose really meant was changing the conversation around someone who’s sick where they have to wait and wait and wait until the day that they’re healthy before they do anything, to this notion that I could be exactly who I was in the moment with all of my mess ups and my failures and my pain and my complications, that I could be a sick person and still have something to give, still have a life worth living.”
• “Ever since the time I was a kid… and I think everyone has this experience… you’re taught that someone else is gonna do it, there’s someone else who knows more than you, someone else who can do this better, you’re not there yet, you’re not ready. And I realised that I can’t spend my entire life waiting for someone to give me permission to live a life that I’m proud of.”
• “I think everything good in my life has come from my sickness and that’s a terrifying thing to admit to someone because then, you know, what else is there?”
• “There is a really fine line between wanting something because of what you can give with that thing versus wanting it because you think it’s gonna make life better.”

I will also be making a donation to Claire’s Place Foundation as well. Claire had a profound effect on my life and I want to pay that forward. I’ll never been able to thank her for how she’s helped me but I can do my best to follow the example that she led by, to follow the message that she embodied.

I really recommend watching this documentary, especially if you or someone close to you is living with a serious illness or disability. Having said that, it’s very emotional so please take care of yourself if you’re going to sit down and watch it.

I’m sending all of my love to Claire’s loved ones, especially today.