Finding HopeHappy Birthday, Claire
Posted on April 10, 2022
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.
To Gig Or Not To Gig
Posted on February 17, 2018
What with the medication and the side effects and the day-to-day consequences of my specific Venn diagram of issues, I have been feeling incredibly unwell over the last several months. It’s been really tough: I’ve been dealing with nausea, dizziness, weakness, shortness of breath, shakiness, and so on. Having spent so much time and effort convincing people that a mental illness is actually an illness, that it isn’t less important just because the symptoms are inside your head, I think it’s easy to forget that these problems also have physical symptoms. I’m guilty of it too and I’m not very good at accepting that reality. But I’ve had to of late. Or, at the very least, try not to give myself such a hard time over it.
But this week I had my first gig in a really long time and I was going to do it, come hell or high water. The hardest thing has been not being able to do the things I love the most, namely singing and songwriting. That makes me a kind of stir crazy that I’m not sure I can put into words. So I did my absolute best to make sure I was ready, in both the health and music sense, and I thought I’d share some of the things I did in case they’re useful to anyone else.
Make sure your expectations are realistic – In the last six months, I’ve been offered a couple of gigs that I knew I just couldn’t do, regardless of how much I wanted to do them. I just wasn’t well enough. But this one was perfect: a short set, a relaxed atmosphere, lovely and supportive people… It was a really good opportunity to do this thing that I love so much without too great a cost to myself.
If it feels right, let those in charge know – I don’t think this is always necessary but when you know it could affect your performance, it can be a good move. It’s my default position to be open and honest and because I write songs about my experiences with mental health and Autism, they find out soon enough anyway but I’m also aware that people can jump to incorrect conclusions when they hear the word ‘Autism.’ So there are pros and cons but it’s something to consider.
Practice in small doses – There’s no getting away from the fact that you need to practice to be ready to perform well at anything. But it doesn’t have to be a huge, daunting black cloud that swallows up your day. I hadn’t been doing much consistent practice because I just felt so awful but I managed to build in fifteen minutes a day. It felt pathetic given that I used to be able to sing and play for hours but I’m trying to just acknowledge the thought and then put it aside. Even fifteen minutes was leaving me shaky but it gave me back some of my confidence and even though I don’t have another gig for a while, I am going to try and keep to this. It gives me more than it takes away.
Physically prepare your body – Make sure you’ve slept enough, eaten enough, and drunk enough water. These can be hard; I’ve struggled with all of them. But try to remember why you’re forcing yourself through it and do your best. It puts you in the best possible position to perform well which is, after all, the goal. Hopefully that motivation is enough.
Do whatever it is that gives you a boost and if you can’t do that, avoid the things that bring you down – I usually listen to music to inspire and energize me before a gig. They’re not necessarily happy songs but they are all high energy or high intensity. That helps me get into the right mindset to perform and that usually overrides whatever I’m dealing with physically.
If you need to stop, stop – I’ve been to multiple gigs where acts have had to call it quits mid set because of a terrible cold or whatever and every single time, the only thing anyone says is how impressed they are that the person got as far as they did. That may not always be the case but would it be better to push through and end up face planting onto the floor when the dizziness turned into fainting? No, it would not. Do what you can for as long as you can and then gracefully retreat.
Now I can’t prove that these things helped but I know they didn’t hurt. The gig went really well and it felt so good to be performing again. A couple of days later and I’m still tired and shaky but if that’s the price, I’m more than happy to pay it. For the first time in weeks, I feel like I’m in sync with my life; my anxiety has dissipated and I actually feel calm. That’s not something I can say very often.
