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.

When Things Get Really Bad

Since I last posted on here, literally all I’ve done is survive.

After putting up last week’s post, I went to therapy, which just about wrecked me. It was really hard going. I don’t want to get too into what we talked about and what I’m currently struggling with because I’m really struggling with it and I’m still figuring out how to put all of it into words. But I think the gist of it is important to include: I’m struggling with ‘feeling’ autistic, like I’m never going to be able to function the same way as everyone else. I don’t know how to cope with a thought like that. And that has really triggered my depression, in a massive way. I feel like I say this every time, but it feels like the worst place I’ve ever been; but maybe I say it every time because each time takes more out of me.

It looks so small and simple when I write it out like that. But in reality it’s powerful enough to overwhelm everything.

I left therapy feeling absolutely drained. I didn’t know how I was going to get through the day, get through the week to the next session. But somehow I did, one minute at a time. This week has been about survival because sometimes that’s all you can manage – I feel like I’m standing on the very edge of the black hole that is my depression and it’s taking all of my focus to not get pulled in. So while I feel like I’ve achieved nothing, I’ve actually achieved everything. At least that’s what I’m trying to tell myself.

So I thought I’d write down what I do when I’m in this place, where the only thing I can do is survive:

Each day, I get up at seven and go to the gym to swim for thirty minutes. I always want to do more but through trial and error (usually error), I’ve found that this is the amount I can do and still kind of function. If I push on, I end up falling asleep during the day and screwing up my sleeping pattern or I end up in a place where everything makes me cry. So I’m trying to be sensible and build it up slowly.

I get home and head for the living room. I curl up on the sofa, turn on the TV and continue the rewatch of whatever TV show I’m watching (currently The Mentalist). I’m not really watching; it’s more about having familiar, comforting background noise so that the scary thoughts can’t get in. Then I find something that will distract me from all the overwhelmingly difficult things. The activities that work best for me are playing piano and printing, cutting, and sticking pictures from Tumblr into notebooks. And sometimes reading a book works, if I have the concentration to actually read.

And I use those things to get me through the day. I spend time with the animals in my house. I’m lucky enough to have a Mum who works from home so that I can have someone with me when I need to have someone with me. I try to eat well.

And then I go to bed not too late and start all over again.

It’s a hard thing to get my head around and I’m aware that I’m very hard on myself. Because even though I genuinely believe that sometimes all you can do is survive, I find myself getting desperately upset that I’m ‘not doing anything.’ I feel like I’m not trying hard enough – in my mental health, in my music, in my life – and that I should ‘push through it.’ And it’s so hard to think that when I feel so overwhelmed by my depression.

And, outside all of that stuff, someone I care about is in hospital and no one really knows what the outcome is going to be. So I’m trying to manage all the anxiety around that too but it’s like trying to stand on ground that’s constantly shifting.

I think that, if I keep writing, I’m going to end up going in circles: ‘it’s okay to focus on surviving’ to ‘I should be trying harder’ and back to ‘it’s okay to focus on surviving’ and round and round and round. So I’m going to stop here. But regardless of all my anxieties and negative thoughts, I know that it’s okay to focus on surviving. And I hope you know that too.