Posted on September 29, 2018
Have you seen the book where various different celebrities or famous people write letters to their younger selves? Some of them write pages and pages and some of them write a sentence, maybe two. But the majority of them reveal very little about their lives because they believe that the journey to the major events is as important as those major events. I don’t disagree with that but considering my levels of anxiety, it wouldn’t be the worst thing in the world for my younger self to have a little more certainty. Most of my stresses, then and now, are about the future so this would’ve been the perfect thing to calm younger me. Obviously this is a hypothetical exercise since we haven’t actually invented time travel and therefore don’t have to worry about causing a paradox that dramatically alters human history. We’ve all seen enough sci fi to know that that always ends badly.
- Your grades are only important for the next step. I know everyone keeps talking about how universities and jobs all look at your GCSE results and maybe in some fields – like medicine or if you wanted to be an astronaut (yes, I know, there’s a little bit of you that really does want to be an astronaut but, spoiler alert, that hasn’t happened yet) – that’s true but for the most part, your GCSEs only matter until you have A Levels and then your A Levels only matter until you’ve got a degree. Hopefully, you get my point. Try not to stress too much. If you get a grade that wasn’t as good as you wanted, feel it, process it, and let it go. Move on to the next thing. It will be okay. There’s always more than one way to get somewhere.
- Try not to worry about fitting in. I know you wish that you could be like the beautiful girls who all seem to have it so together but it won’t always be like that. The years will pass and you’ll be glad that you have your life and not theirs, not because there’s anything wrong with their lives but because you are where you’re supposed to be. I hope.
- You will get to Nashville. I know how much you want it. I’m not going to tell you how it happens because that journey is important but I promise you that you’ll get there and it will be worth the wait and the effort. I know it’s stressful and you’re terrified that you’ll never get there but you will. And it will be magical. Take it from someone who knows.
- Don’t let people treat you badly. You don’t deserve to be treated that way. There will always be people who think it makes them superior (*cough* or a better teacher *cough*) but it doesn’t. I know it’s really emotionally overwhelming but you are strong enough to stand up for yourself. I promise you, you are.
- It’s okay if you feel like you’re never going to get through something or if you feel like things are never going to get better. People will tell you that you will and you won’t believe them but that’s okay. There are things in life that you can’t know until you’ve experienced them. You can’t take pathways in your brain that you haven’t forged yet. So, when people tell you that time heals everything, try not to despair. They can say that because they have had that experience. It’s okay that you don’t yet. So keep going, keep living, and try to remember that everything you do and everything you experience is shaping you into the person you have the potential to be. And, chances are, a person who knows that time heals and a person who will annoy the shit out of a younger person by saying that time heals.
- You are so much stronger and can endure so much more than you think you can. I know that that’s not always a blessing but we have to believe it is, you and me. You’re gonna go through the wringer and it will feel really unfair but you’ll get through it. At the very least you’ll make it to twenty-four.
- There’s a reason you’re feeling the way you are. This is the point I’ve thought about most, about whether or not I should include it, but my gut says that I should. You’re autistic. I know that seems like a weird idea but you’ve always felt like your brain works differently to everyone else’s and this is why. Your only experience of Autism is the boy who was always being told off for being disruptive in primary school and most of the time, it’s really different for girls. You’ll figure it out, you’ll create a relationship with it, and what you learn will help other people.
Ultimately, there’s not much to be gained from wishing you could change the past and while there are things I wish had been different, I don’t think I’d change almost any of the things I had control over: the people, the pursuits, the loves… I’d choose them all over again.
Posted on September 22, 2018
A while back, my brother told me about an upcoming talk called ‘Is Autism A Gift?’ Naturally, I was curious. And slightly sceptical. For me, Autism has been one struggle after another but I’m aware that that is likely due to the late diagnosis rather than the actual Autism. But who knows. So I was really intrigued as to what the talk would be like.
The talk was part of New Scientist Live, which is a huge event – a festival, really – all about “ideas and discoveries for everyone curious about science and why it matters.” I couldn’t describe it better than they do. It’s full of stalls, interactive experiences, and stages for talks on all different subjects. Had I not had previous engagements on the other three days of it, I would’ve loved to stay longer and explore more. I was almost giddy with all the potential for learning.
The speaker was Dr Anna Remington, the director of UCL’s Centre for Research in Autism and Education and a leading authority in the area of superior abilities in Autism. And she had me from the beginning: she asked how many people were autistic or had a personal connection to Autism, almost the entire audience put their hands up, and she said, “I personally feel that you are the experts.” She was warm and enthusiastic, the perfect combination of fascinated and respectful. I liked her straight away.
She started off with a brief outline of Autism, of the social aspects (struggling with non-literal language, eye contact, managing relationships) and the non-social aspects (the need for routine, areas of intense interest, sensory sensitivities). She also talked about the language around it, about using ‘autistic people’ rather than ‘someone with Autism,’ because so many people feels that it’s so intrinsic to their identity. She quoted someone she’d worked with: “You can’t separate the autism from me. It’s not something I carry around in a bag with me, it’s something that’s absolutely part of my personality and identity.”
She said that so many talks are about the difficulties of Autism but that she wanted to talk about some of the positives, not the savants but the areas where autistic people are shown to excel. She walked us through some studies – some visual tasks and some auditory, done with both children and adults – and showed us how the groups with autistic people did significantly better.
She introduced the idea of ‘perceptual capacity’: “The amount that we can process at any given time is known as our perceptual capacity. Everybody has a slightly different perceptual capacity and whether we process something depends on whether our capacity is full up or if there’s still room left over… Now the crucial thing is that we have to assign our whole capacity at any given time. You can’t assign just part of it. So, if the task that you’re doing doesn’t fill up the whole of your perceptual capacity, then anything that’s left over will automatically process something irrelevant around you.”
I found this whole concept fascinating. This is the idea behind why people listen to music while working or doodle while talking on the phone, filling in that left over capacity with information that doesn’t interfere with what you’re trying to do. I have always had stuff playing in the background (audiobooks, movies, TV shows – not music because I get distracted by thinking about the mechanics of the song and of the lyrics) and was always told that I couldn’t possibly do whatever I was doing well with that much ‘distraction.’ So it was very satisfying to know that I’d been right all along. If you want to know more about this, this article is very helpful.
She finished with why this research, why these findings, matter and how they can be applied in education and employment to improve the experience and opportunities for autistic people. The research is really exciting and I would love to be involved in some way; as I mentioned in my post about taking part in Autism research studies (here), there’s something really empowering about it, about feeling part of change. I spoke to her about it after the talk and she was absolutely lovely.
My one negative about it all was the level of background noise, this constant drone of indistinguishable voices. It made it difficult to hear the talk and it’s one of the things that I’ve found really drains my energy. But, although it completely wore me out, it was so worth it. It was such a positive experience and I’m looking forward to seeing where this research leads.
Posted on September 8, 2018
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.
Posted on September 1, 2018
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.
Posted on August 25, 2018
I’m struggling. And I’m struggling to write this post.
Medication wise, I’m taking Amitriptyline for my depression and Pregaballin for my anxiety. The Amitriptyline has definitely helped with the physical symptoms of my depression: my concentration is better, I can think more clearly, and my appetite has returned. But as the depression pulled back, my anxiety returned in full force. It was so bad that I had to have something playing – music, audiobook, TV show – and playing loud so that I couldn’t think and therefore the anxiety couldn’t take hold, if that makes sense. I started to hate the evenings and going to bed because as the busy-ness that filled the day faded, my anxiety got stronger and stronger. Hence the Pregaballin. I’ve tolerated these medications pretty well. The thing I’ve noticed most is that I constantly have a dry mouth so I’m drinking ridiculous amounts of water every day. But that was something I needed to improve anyway and I’ve had far worse side effects.
For a while, everything was pretty good. I had some really good days, the kind I haven’t had for a really long time. That was really special. But the anxiety and depression – the depression especially – have crept back in and it’s a struggle to even get out of bed. I was starting to think that Amitriptyline might be the right medication but now I’m not sure. I can summon enough energy for the odd social interaction or professional opportunity but I’m really, really struggling with my energy. It doesn’t help that all day, every day something inside of me is screaming at me to crawl under my duvet and sleep for the rest of my life. I feel invisible and useless and miserable. Just living feels overwhelming.
My perception of time has completely flipped. Up until recently, time felt like it was moving really quickly, like I’d sit down to write a blog post and the whole day would be gone even though I’d barely written more than a few sentences. Everything seemed to take so much time. But now a day seems to last a week. When I’m having a good day, that’s great; I can achieve so much. But on a bad day – and I’m having quite a few of those – it’s overwhelming: I have to actively survive that long. So much happens, so many emotional ups and downs. It’s exhausting.
I don’t know what to do. But I’m in regular contact with my psychiatrist and my therapist; I’m trying to stick to my routine (swimming first thing in the morning, scheduled time for music practice, and so on); I’m talking it all through with my Mum. I guess I’m just muddling through.