Finding HopeIntroducing Claire Wineland
Posted on July 9, 2018
Posting on a Monday?! What?!
I know my posting schedule has gone out the window recently but I really want to share a couple of videos with you guys.
I’ve talked about Claire Wineland and her videos before and I’ve had this one bookmarked for ages. Claire is twenty-one years old and has Cystic Fibrosis (lots of useful information here). She’s spent most of her life raising awareness about CF and created her own non-profit organisation to support those with CF and their families. She’s incredibly wise and eloquent and even though we’ve had very different experiences of life and of health, I really relate to a lot of what she says. She’s inspired me a lot.
Just over a month ago, she was put on the transplant list for new lungs and she made a video where she talks about how that feels and what it means. And while she’s talking about transplants and new lungs and things that many of us don’t have direct experience of, the way she talks about living is universally relatable. And important.
“Transplant, for me, isn’t really just about getting new lungs. It’s not about being healthy, it’s not about fixing myself. For me, transplant is about what it means to choose to live, not in an ignorant way. I don’t believe that once I get lungs and once I’m better that everything else is gonna be better. I don’t believe that it’s gonna save me or fix me or make me any more of the person that I wanna be. I think that getting new lungs, for me, is like a representation for what it means to choose to be here, on this planet, and to just choose to try, to try to show up and be conscious and to be aware of ourselves and try and actually give something of ourselves, to not spend our whole lives just resentful of being alive, because it’s so easy to be resentful of being alive and I get it. I completely get it. It’s so hard not to fall in the trap of seeing that every single thing you choose to do in life, no matter which way you go and what you choose to do, there’s always just gonna be this… this innate pain in life, you know? There’s always gonna be someone or something that’s gonna come and yank the rug out from under your feet, no matter how healthy you are, no matter how rich you are, no matter how perfect your life may seem, or how much you’ve worked for what you have. There’s always something right around the corner that is going to come and make a fool out of you and that’s life. And it’s terrifying. And one of the things I’ve found that’s the most difficult about choosing to get new lungs is just… It opens up this well of want in me. Like, I want to be alive and I want to have the time and I want to have the energy to actually make something of myself, give something, like, make something I think is genuinely valuable, not just something to make myself feel better… I want to actually give something… and that’s really scary, because once you want something, then it opens you up to just that huge fear of failing. Like, the moment you admit that you want it then you have to admit that you don’t want to fail and you have to look at how painful it would be to lose it. So there’s just so many different layers to this. Like, it’s not just about lungs.”
The stuff about wanting to live and how scary that is really hits home for me at the moment, at this point in my mental health journey – I hate describing it that way because it sounds so quaint (and depression is anything but quaint) but I haven’t found a better word for it yet. Depression can make living feel like a struggle at best and unbearable at worst and I’m just coming out of the worst I’ve ever experienced. And knowing that someone in a different country, in a different situation, with a different life experience feels the same fear that I do… knowing that is comforting. It makes me feel less alone and it makes me feel part of something bigger than just me.
“It’s all very human, and it’s all very real, and it’s all very scary. And I have no idea what’s gonna happen.”
This video and these quotes have been in the back of my mind and on my list to write about for a while now. I just hadn’t gotten around to pulling this post together until Claire posted her most recent video on Saturday night.
I feel for her, so desperately, especially when she talks about how there’s so much more she wants to do. I can only imagine what this is like for her. It makes me so angry and upset that anyone should have to go through such stress while already dealing with such difficult circumstances: illness, treatment and medication, hospital stays, and so on. The gofundme link is here, in case you want to donate or share.
I just wanted to share her videos and her words with you guys. Her perspective on life and living has given me a lot to think about and hopefully it’s the same for you.
And Claire, just on the off chance you see this, thank you. Thank you for your words, thank you for making me feel understood even though you’ve never met me. Thank you for making me laugh and for making me cry. I’m grateful to be able to help, even if it’s in a tiny way and in a tiny amount. I have no doubt that you will continue to do incredible, important things.
Tips For Travelling as an Autistic Person
Posted on July 7, 2018
Travelling is hard work for everybody. It’s exhausting and stressful and frustrating. But add in sensory issues or anxiety or whatever it is you struggle with and it can be a traumatic experience. Since we are now in the summer holidays and prime travelling time, I thought I’d put together some things that I found helpful to do as an autistic person who struggles with anxiety. I would like to point out (again) that there is a maddening lack of resources (and even simple testimony) for or from the point of view of autistic people. I spent hours searching for something but there was next to nothing; all the advice was for parents of young autistic children. Of course that information is important but it’s very demoralising to an autistic adult – essentially being compared to a child – especially one who was diagnosed late and has had to work so hard, often unaided, to manage their difficulties.
PLAN AHEAD – I know, this is my advice for everything, but it really does help. Struggling with unexpected change is a common trait in Autism and while planning can’t prevent all of those changes, it can make a huge difference. It can also give you a confidence boost, knowing that your actions have prevented a certain amount of anxiety.
SPEAK TO A TRAVEL AGENT – Being able to hand some of the responsibility off to someone else can be really helpful, especially if you have limited energy. You have to prioritise the tasks and if there are people who can help, that is a valuable resource. These people are also more likely to know the ins and outs of booking flights and accommodations etc and will therefore be more equipped to help you get what you need and want to get the most out of your trip.
CHOOSE YOUR ACCOMMODATION CAREFULLY – Having somewhere where you can have time out and recharge is so important when travelling. We all have different sensory needs and different things we can tolerate so choosing a place to stay is really important. For example, staying with other people (people I don’t know) causes me a lot of anxiety so when we look through Airbnb, we look at places that allow us to be the sole inhabitants. It won’t be the same for everyone but if you can identify what you need, you can hopefully find somewhere to stay that can be a restful place rather than a stressful one.
WRITE A LIST OF EVERYTHING YOU’LL NEED AND HAVE SOMEONE CHECK IT – Having a list makes packing so much easier and having someone check it for you just reduces the chances of making a stupid mistake like forgetting your pyjamas. Because that really isn’t something you need to deal with when you arrive wherever you’re going. Also make sure that you’ve got any medications or medical equipment that you need because those can be particularly difficult to get hold of, especially if you’re in another country.
PACK AN EMERGENCY KIT IN YOUR CARRY ON BAGGAGE – On the off chance that your bags get lost along the way, pack a change of clothes, some medication, etc in your carry on bag so that you can at least get up the next day and work out a solution.
BRING YOUR OWN FOOD – You’d need to check with your airline but there are certain foods that you can take in your suitcase that won’t cause you any problems while travelling. That means that, at the very least, you’ll have something to eat when you get to your destination. But in my case, it gave me a staple food that I knew I could eat in case I couldn’t find anything I could tolerate. It took away some of the anxiety, for which I was grateful.
PREPARE SPECIFICALLY FOR THE FLIGHT – Apparently, we’re flying in this hypothetical. Many people have fears associated with flying and while I don’t have any magic words of wisdom there, there are a couple of tricks to make it slightly less difficult, especially if you have sensory issues. Take sweets to suck on and relieve the pressure in your ears. Wearing a mask over your face can help if you’re worried about bad reactions to everyone’s germs in one confined space, as well as chemicals from perfumes etc. I’ve also found that a playlist of familiar music helps with the constant noise of flying. And wearing comfortable clothes: you’re most likely gonna look awful when you get there anyway so why bother with anything more than a T-shirt and leggings.
BUILD IN TIME OUT AND DON’T FEEL GUILTY FOR IT – Easier said than done, I know but burning yourself out in the first couple of days doesn’t make for a good trip. So try to take breaks between things and listen to your body: if you need to rest, rest. It will make the whole trip more enjoyable and worthwhile if you do.
As of now, I think that’s all I’ve got. But if you guys have any tips that you’ve found helpful, please let me know!
Snapshot #2: Taylor Swift’s Reputation Tour
Posted on July 4, 2018
In case you guys hadn’t figured it out yet, I’m a big Taylor Swift fan and so, of course, I had to go and see her live when she brought the Reputation Stadium Tour to Wembley Stadium. One of my very favourite memories is seeing her 1989 Tour at Hyde Park in 2015: the music, the sun setting, the way I felt. It was magical. So I was very excited to see her perform again and ended up seeing both of the Wembley shows. With something like this – a huge show that I’m very emotionally invested in – I find it better for my overall mental health to see it twice. That helps to manage my anxiety about missing something or getting overwhelmed; I have a second chance to take it all in, which lessens the pressure a bit and makes it easier for me to cope with everything going on. It wasn’t cheap but I don’t regret it: Taylor is one of my favourite artists (and people), she doesn’t tour here very often, and concerts are the only thing that I really spend money on. So although I do struggle with anxiety around money, this experience wasn’t too bad.
The shows were amazing. Taylor is an incredible performer and the songs work so well performed live. The band, the dancers, and the backing vocalists were all fantastic too and the whole show was completely seamless. The setlist was a really great mix of songs from Reputation, as well as at least one song from each of her previous albums thrown it. That was really cool. And because she chose to perform ‘So It Goes…’ as the surprise song (she performs an acoustic version of a song in her back catalogue each night to keep an element of unknown in a very choreographed show) on the first night, we got to hear the whole Reputation album live. That was very special.
I’m not really a fan of Stadium gigs – Taylor is probably the only person I’d go to a stadium to see – because you end up spending so much time looking at the screens in order to see the person performing but a combination of the ginormous screens built into the stage and the multiple b-stages around the stadium did make it feel smaller. Plus, Taylor is such a compelling performer and the crowd was so engaged that you almost didn’t notice the size. Having said that, I do hope that, one day, she’ll go back to playing smaller venues. I mean, she could sit on a box, playing acoustic guitar for two hours and most of that stadium would still want to go.
My favourite performance was ‘Getaway Car,’ which is also my favourite song on the album. The graphics were beautiful and by that point, it was dark so the light up bracelets we’d been given were the only way to see the crowd. It was a magical sight.
My favourite moment of the two shows was Taylor’s mashup of ‘Long Live’ and ‘New Years Day’ (from her Speak Now album and Reputation album respectively) on the first night. It’s always a special moment because she dedicates it to the fans who’ve stuck by her. Halfway through, the whole crowd started cheering and it went on so long that I thought they’d have to cut a song from the setlist; every time it started to fade, it picked up again with more enthusiasm than before. You can see it in the video below: it clearly meant a lot to her. I’ve seen several people saying that she’s milking it – exploiting the situation – and that really irritates me because, when it comes to Taylor Swift, everyone seems happy to judge without context. This is the context: after last year, when everyone was demonising her and calling her a ‘snake’ (don’t get me started on that – that’s another example of people jumping at the chance to criticise her without actually investigating the situation first), she, in her own words, “went through some really low times.” The choices she makes have always centred firmly around what her fans want and suddenly she wasn’t sure if anyone would even show up. So this moment (that the video shows) is important. This moment is proof that she was wrong, that her fans see her for who she truly is and always will, and she’s just taking it in.
Oh, and it was pretty cool when she brought out Robbie Williams on the second night…
It was also really special because I got to go with one of my best friends and on the second night, we got dressed up, inspired by the Look What You Made Me Do music video. I’ve never done that for a concert before but it was SO much fun; it made the concert experience last longer and feel fuller. I had moments of feeling incredibly self conscious – and disgusting, if I’m being completely honest – but I also had moments of feeling really good and really confident. It’s complicated but I’m really glad we did it.
We had a really amazing time. I was in the middle of a really difficult time with a lot of very difficult emotions and while it didn’t fix that – that would be a bit much to put on a concert, even a Taylor Swift concert – it was a wonderful escape and I’m really grateful for that. And Wembley Stadium was really helpful in making the concert as stress-free as possible. I’m still getting used to the fact that I’m eligible for disabled access and tickets but not only does that make it more possible for me to physically go to the shows but the validation of how I struggle makes the shows much more enjoyable. It has been my experience that there’s a weird pressure at concerts to always be standing, always be dancing, always be having the best time, which isn’t always possible for me: I can’t stand for long periods of time. And because my difficulties are invisible, I’ve had people assume that I’m not enjoying myself and therefore don’t ‘deserve’ to be there as much as someone who would stand and jump and dance through the whole show. It’s stupid and reductionist but it is there. I don’t want to rant about this but I think it’s worth commenting on. Having a disabled ticket didn’t change that but by validating my experience, it gave me the confidence to enjoy the concert within my own abilities: I stood and danced when I felt able to; I sat when I needed to; I sang along to every song. And I had an amazing time.
I paid the price for going to (and dancing at) concerts two nights in a row: the muscles in my legs were stiffening up before we even made it to the tube station, which made walking physically painful. By the next morning, my whole body hurt and it took almost a week to recover fully. It sounds over the top but it’s the truth. I don’t know why my body reacts this way; I’ve spoken to several doctors and they all seem to think it’s to do with my Autism – although that tends to be their answer for anything unexplained. So, for now at least, I just have to manage it.
I guess the point of this post (beyond just writing it for fun) is to talk about managing concerts as an autistic person. They’re busy and overwhelming and complicated but there are ways to make them possible. I also wanted to talk about doing something like going to a concert when you’re deep in depression. You’re allowed to do fun things when you’re struggling; it doesn’t make your struggle less valid. And it doesn’t have to be a life-saving experience. That’s a lot of pressure. We’re all just trying to get through and sometimes that means singing your heart out at a concert.
Finding Hope 