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.
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 ACCOMODATION 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!
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.
Posted on July 1, 2018
So, I was having a particularly difficult day and I found myself online, reading articles about depression and looking for insight. I even found myself googling ‘reasons to keep going,’ not in a suicidal way but because I was in the midst of all these overwhelmingly huge, complicated, and awful feelings and I felt like I needed some clarity, a straight answer to a very big question. You probably won’t be surprised to know that I didn’t find one but I realised that I was essentially searching the title of the book that was sitting on my bedside table: Reasons To Stay Alive by Matt Haig. I’ve had it on my to-read list for months but I haven’t had the concentration or motivation to actually read for about a year. Maybe I was finally desperate enough that I was able to push through that. Maybe it was influenced by my recent change in medication. Who knows. We don’t live in a vacuum. Everything affects everything.
I have to admit that I have very mixed feelings about this book. There was so much hype around it and everyone I know who’s read it has recommended it to me. I expected to love it but like most things in life, it wasn’t that simple. If you’re reading this and thinking, “Oh god, she’s going to criticise the crap out of this and I don’t wanna know,” please give me a chance and hang in there a little bit longer. These are just my thoughts, good and bad and different. Hopefully I’ll have something useful to add to the discussion around the book.
The first thing is that I love Matt Haig’s writing. I find it easy and natural to read but also powerful and evocative. And there were parts that made me laugh; I found the continuing comparisons to having various body parts on fire very amusing. He’s a very engaging writer. I like the way he talks about depression, frank but empathetic. Here are some of my favourite quotes from the book:
- “There’s no right or wrong way to have depression, or to have a panic attack, or to feel suicidal. These things just are.”
- “If your leg is on fire, it is not selfish to concentrate on the pain, or the fear of the flames. So it is with anxiety. People with mental illnesses aren’t wrapped up in themselves because they are intrinsically more selfish than other people. Of course not. They are just feeling things that can’t be ignored.
- “The main thing is the intensity of it. It does not fit within the normal spectrum of emotions. When you are in it, you are really in it.”
- “Depression can be exacerbated by things being all right externally, because the gulf between what you are feeling and what you are expected to feel becomes larger.”
- “People say, ‘take it one day at a time.’ But, I used to think to myself, that is all right for them to say. Days are mountains. A week was a trek across the Himalayas. You see, people say that time is relative, but it really bloody is.”
- “Life is hard. It may be beautiful and wonderful but it is also hard. The way people cope is by not thinking about it too much. But some people are not going to be able to do that.”
- “I stared at a cherry tree and felt flat. Depression, without the anxiety. Just a total, desperate flatness.”
I think that descriptions like these would be particularly helpful to those who haven’t actually experienced depression but are trying to understand what it’s like for someone they know or someone they love.
And in a similar vein, I think he describes the seriousness of depression incredibly well: “Depression is a disease so bad that people are killing themselves because of it in a way they do not kill themselves with any other disease.” We all talk a lot about how serious depression is but it’s not often that someone can so succinctly get the message across.
This, I think, is my favourite quote from the book:
“Most of the time we do not feel the near-infinite nature of our physical selves. We simplify by thinking about ourselves in terms of our larger pieces. Arms, legs, feet, hands, torso, head. flesh, bones. A similar thing happens with our minds. In order to cope with living, they simplify themselves. They concentrate on one thing at a time. But depression is a kind of quantum physics of thought and emotion. It reveals what is normally hidden. It unravels you, and everything you have known. It turns out that we are not only made of the universe, of ‘star-stuff’ to borrow Carl Sagan’s phrase, but we are as vast and complicated as it too. The evolutionary psychologists might be right. We humans might have evolved too far. The price for being intelligent enough to be the first species to be fully aware of the cosmos might just be a capacity to feel a whole universe’s worth of darkness.”
I’ve described depression as having a black whole in my chest and this quote reminds me of that. When I’m deeply depressed, it feels like ‘a whole universe’s worth of darkness.’ It does. It’s that strong and overwhelming.
I also like the format of the book. Having not done much reading (because depression – and quite possibly my medication – dulled all the parts of me that made reading a book possible or enjoyable), reading a whole book was a very daunting challenge so having short, succinct chapters made it feel much more possible. It may well be a good analogy for how we tackle depression: trying to fight it as a huge, indistinct is such a difficult, exhausting task. Breaking it down into manageable steps seems like a better idea.
Now, onto the more difficult stuff. I have to say, I found the book pretty upsetting. There were several major differences in our experiences of depression and while I know, of course, that this is his experience of depression only that he’s writing about (which is absolutely his right), I ended up feeling like we have struggled with entirely different illnesses. That, I think, made it much harder to connect to the book. I mean, I’ve just talked about how much I liked his descriptions of depression and I do but while we have both really FELT depression, our actual experiences and the circumstances around having depression are completely different. I don’t think I’m explaining this very well. Let me give you the analogy of dog breeds: they’re all essentially dogs – they all have dog DNA – but they appear in hundreds of different ways. That’s how this feels to me. We’ve both had the DNA of depression, but where his is bulldog, mine is a German Shephard (I’m not gonna lie – trying to find two different breeds of dog that are very different without belittling either of our experiences by comparing one of them to a dachshund or a Chihuahua was a challenge).
The biggest thing for me was that I felt like there was this inherent implication that, after being depressed, you will never be that low again. Because you lived through it, because you survived it, or whatever, that you have this new perspective on the world that will somehow protect you from depression. It’s a belief that many people have but for me that is just not true. Each time I think I’ve reached the lowest point I can possibly survive, there’s always more. There’s always worse.
On a similar theme, he references another common idea, that feeling the good stuff is worth feeling the bad stuff: “You know, before the age of twenty four I hadn’t known how bad things could feel, but I hadn’t realised how good they could feel either. That shell might be protecting you, but it’s also stopping you feeling the full force of that good stuff.” Let’s say that’s true. What does that matter if the bad to the good have odds like 364 to 1? Is it worth it? I’m not sure. In my experience, the bad stuff is so much more devastating than the good is good. I’m not attributing this idea to Matt specifically but I feel like it’s worth commenting on. This idea equates the strength of good and bad emotions (something that is practically impossible), and suggests that it’s acceptable (and even expected) to feel really terrible, simply because you’ve had some good moments. I’m just really wary of anything that justifies struggle and trauma.
About halfway through the book, he talks about how he overcame his separation anxiety when his partner needed him to, because she had to go to the hospital with her sick mother and someone had to be at the house. I found that really hard to read, because a lot of the time, for a lot of people, that’s not the case. For me, that’s not the case. Anxiety, depression, mental illness… they don’t go away just because you need them to. I wish they did and, if I’m honest, it just made me feel more pathetic. I can’t help thinking that it would’ve been more helpful if he’d mentioned some of the times it hadn’t been like that and then said something like, “I don’t know why it was different this time.” Just to represent that problem, to give it context. I mean, I’m making an assumption that there were moments where he couldn’t overcome his anxieties but I think it’s pretty safe to say of anyone who’s struggled with severe anxiety for an extended period of time.
The chapter ends with, “needless to say, they came back,” in reference to his paralyzing anxiety that something would happen to his partner and her parents while not in his sight. This is something that I struggle with on a daily basis but my fears not coming true hasn’t ever dulled those fears. Instead I feel like my time – my run of good luck – is running out. You can only throw heads so many times, you can only be lucky so many times before the inevitable bad thing happens. In my experience, anxiety isn’t rational and can’t be managed as if it is.
He goes on to say, “I had reasons to force myself to be strong…” which, I have to say, irritated me. We know that depression and anxiety and so on are illnesses and are therefore out of our control. It’s not logical. You can’t reason with it or simply will yourself out of it. In my experience, my reasons keep me going for a while, get me through what I need to get through, but then I crash, often lower than before. It’s great and important that he found that motivation and I don’t want to take away from that I just don’t think it’s as straightforward as that.
“…To put myself in situations I wouldn’t have put myself in. You need to be uncomfortable.” I hear this expression all the time and I HATE it. I hate it enough to put the word hate in capital letters. I am ALWAYS uncomfortable. I cannot remember the last time I was comfortable in anyway, whether it be emotionally, mentally, or physically. Maybe my ASD makes it impossible to be comfortable. Maybe there’s another explanation. So, how does that fit into this formula? I don’t know the answer. And what if there’s no good in it, no purpose? What if that’s all there is? I don’t know the answers to those questions either.
“People often use the word ‘despite’ in the context of mental illness. So-and-so did such-and-such despite having depression/anxiety/OCD/agoraphobia/what-ever. But sometimes that ‘despite’ should be a ‘because.’ For instance, I write because of depression.” I don’t disagree but I’d like to propose an addition: and. So-and-so did such-and-such and they have depression/anxiety/OCD/agora-phobia/whatever. I have struggled with identity stuff for a long time – probably from my BPD and the late diagnosis of ASD (which obviously does affect everything I do as it is something I was born with) – but I’d like to think that I am not who I am solely because of my mental illnesses. A lot of people say that their experiences with mental illness have made them kinder, more compassionate and thoughtful people and that’s amazing but I don’t think they give themselves enough credit. Everything we become we were always capable of becoming and the circumstances and coincidences that start those chain reactions shouldn’t get all the glory.
Despite the parts of the book that I struggled with, there were parts that really spoke to me. There were several quotes that I related to so strongly that my chest physically hurt when I read them:
- “The weird thing about depression is that, even though you might have more suicidal thoughts, the fear of death remains the same. The only difference is that the pain of life has rapidly increased.”
- “In a world where possibility is endless, the possibilities for pain and loss and permanent separation are also endless. So fear breeds imagination, and vice versa, on and on and on.”
- “So, if [the universe] catches you smiling, even fake smiling, then – well, that stuff’s just not allowed and you know it, so here comes ten tons of counterbalance.”
- “Depression, for me, wasn’t a dulling but a sharpening, an intensifying, as though I had been living my life in a shell and now the shell wasn’t there. It was total exposure.”
- “He was looking at me like I was my former self. How could he not see the difference?”
- “I was scared of the quiet. I was scared, I suppose, of having to slow down and soften the volume. Scared of having nothing but my own mind to listen to.”
- “And we are scared of our own crumbling, and the crumbling of others.”
- “If the stone falls hard enough, the ripples last a lifetime.”
- “Feeling. That is what it is all about.”
Ultimately I have mixed feelings about this book. I can see why people love it and why people find it helpful. And I think, had this been my first experience of depression, it would’ve helped me too. I would’ve found it inspiring. But I struggled to connect with it and I found that very upsetting. Maybe it’s my fault for reading it when I did; maybe I was too depressed for anything to help. Maybe, if I’d read it when I wasn’t feeling so completely hopeless, I would’ve had a different experience. Maybe I would’ve felt the differences less and the similarities more. I’ll never know. But regardless, I’m really glad that it’s helped people. Having your struggles and your experiences validated can change everything. As Matt says in the book: “There is nothing lonelier in the world than being surrounded by a load of people on a different wavelength.” That, right there, is why I write this blog.
I hope this was interesting and I hope I’ve managed to represent my emotions about the book (reading it was a very emotional experience), rather than blindly praising it or bluntly criticising it. Despite struggling with the book, I love Matt Haig’s writing and he is one of my favourite people to follow on social media; I have great respect for him. I’m really looking forward to hearing him speak on Tuesday and to reading Notes on a Nervous Planet when it comes out.
Posted on June 30, 2018
I have now been clinically depressed for thirteen months. I’ve been living with depression a lot longer than that but, in May of last year, everything spiralled and I was diagnosed with clinical depression for the second time. So I know my depression pretty well now and there are a few differences between those two states. One is the presence of hope: while living with depression, it’s a constant battle between my depression and the hope that things will change and get better. But sometimes that hope just disappears and the depression takes over. That’s when things start to get really bad. Another difference is the ability to cope; when my depression is particularly bad, I feel completely overwhelmed on a daily basis and devastated on a weekly one. I feel like one more impact and I’ll never recover.
I’ve been in what feels like the lowest place I’ve ever been for the past month. I wish I could describe it but I don’t know if I can; I don’t know if there are words that accurately capture that feeling. It’s like that feeling after you’ve had blood taken, after they’ve pulled the needle out, and your arm hurts in a way you’ve never really felt before but it’s everywhere. It’s like you’re drowning inside your own body. It’s like having a black hole in your chest that’s sucking everything in, leaving you aching and empty. It’s like all of those things and none of them at the same time.
But recently there’s been a slight shift. It’s so slight that saying ‘I feel better,’ feels like a gross over exaggeration and fills me with anxiety. But it is there and that’s really frightening to me. I’ve spent weeks feeling like I’m suffocating, like I can’t possibly survive feeling like this for another minute, but now that that’s not the case, I’m honestly terrified. As miserable as the depression is, ‘better’ is unknown. And scary. As much as I wanted to feel anything else, being depressed is somehow safe and… comforting is the wrong word, but hopefully you know what I mean. It’s clear. I know where the edges are, how it feels. In some ways, being depressed is easier because it’s familiar. I know it sounds weird but it’s like nothing can hurt me because everything hurts already. So, if I step out of that, it opens me up to really feeling hurt again and that is really, really scary.
But what if I’m not ready? Being depressed takes up so much space within me. What if I’m not ready to process everything that I’d have to if that space wasn’t being monopolised by the depression, if it was being filled with more life than I’ve had up until now? That’s overwhelming. I feel so raw and so fragile. What if I’m not strong enough? What if something happens and suddenly I’m crashing down even lower than before? I’m not sure I could survive that. I feel like a fractured windowpane that will shatter if it takes one more hit.
I feel like a little like I’m being dragged into ‘better’ regardless of how I actually feel. I do feel better physically: the brain fog has receded significantly, I don’t feel so numb, to the world and my own emotions, and so on. I’ve even had flashes of future plans, like going to the gym and learning how to bake something new; I haven’t had thoughts like that in a long time. But despite all of that, I don’t feel better mentally so it’s confusing and overwhelming and stressful. I know that that kind of change takes time, conscious processing, and most likely therapy, but that’s hard to remember when I’m feeling so overwhelmed by anxiety.
And part of that anxiety is this suffocating feeling that something bad is about to happen. This is something I’ve struggled with for years (it’s on my list to write about) and although I know it’s completely irrational, it doesn’t feel that way when I’m in it. It feels completely logical. A good thing happened and so a bad thing must happen to balance it out. I dared to want more than I already had and so the universe must punish me for it. When I write it out, I can see how ridiculous it is but it’s how I FEEL. It’s like the instinct that you’re in danger: it’s that strong. You can’t just ignore it. I want to write more about this in the future because it’s important and complicated and distressing.
This is all really overwhelming and scary. And it’s really confusing to suddenly feel like I don’t want to get into a better space after desperately wanting it for so long. It’s really weird when your physical emotions and your mental emotions don’t match, if that makes any sense. I don’t really feel like I understand it so I end up feeling like I don’t want to tell other people because they might assume that it’s as simple as feeling better and therefore expect more from me, more than I’m capable or feel capable of giving. This is a learning curve and I seem to be moving through it very quickly but also very slowly. It’s a mess. I’m a mess. Thank you for sticking with me through this very ramble-y description of it.
Posted on June 27, 2018
A couple of months ago, I (with the help of my psychiatrist) decided that it was time to stop taking the Venlafaxine. I don’t feel like it’s helping; it just makes me numb to everything and, as overwhelming as my emotions tend to be, feeling is better than not feeling. It might not always feel like it but that’s the truth. Plus, the side effects are not worth it, even if it was helping: my concentration and motivation were pretty bad before I started taking it but I’m pretty sure it’s gotten worse, especially recently. Writing has been such a struggle, even the practice of it. My depression has always had a negative impact on my creativity but this is the first time I’ve found it so incredibly difficult to simply write at all: getting words out has been like pulling teeth.
So I had some good reasons for wanting to stop and I’d put in the time to make sure I had an informed perspective. So I discussed it with my psychiatrist and we decided that the right move was to wean myself off the Venlafaxine and try something new.
When I first reduced the dosage, I didn’t really feel the difference. I still felt both depressed and numb, which is a really weird combination. But over time that’s changed. Obviously I can’t know how much of that to attribute to the medication change or to life in general but I still think it’s worth keeping track and I recommend this practice to everyone: it allows you to see the trends in your life and analyse what does or doesn’t work for you.
Not long after lowering the dose, I started getting headaches. The pain was very similar to the pain of a migraine but I didn’t have any of the other symptoms that come with it. Normal painkillers didn’t seem to help much and there were several occasions where I just retreated to my bed and tried to sleep through it. I had one of those headaches almost everyday for about two weeks, which was horrible but they have now passed at least. So that’s progress.
Coming out of that, I felt really raw and emotional, which was very weird, having felt so blank for months. I felt like I had no control over my emotions, which was more than a little bit scary, and kept bursting into tears over the smallest things. It’s felt a bit like I’ve had all of my emotions bottled up since I started taking Venlafaxine and suddenly they were overflowing everywhere: if something upset me, I became inconsolable and if someone irritated me, I had the urge to scream at them. I feel very lucky and grateful that I’ve managed not to scream at anyone because that isn’t how I actually feel. Once that emotion has died down a bit and I’ve been able to process the whole experience, that’s how I really feel. I live in fear of saying something I don’t mean and it ruining everything. So far, I’ve managed to manage these emotional tidal waves. They’re still happening though, even now that I’ve stopped taking the Venlafaxine completely.
And more recently I’ve started to have moments where I can think more clearly. They don’t last very long and to begin with, they were so sporadic that I didn’t even connect them to coming off the medication. But now that there have been a handful of them, it seems pretty likely that the two are linked. These moments are amazing. The feeling reminds me a bit of coming up for air after being underwater for a long time. You breathe in and you can almost feel the freshly oxygenated blood rushing around your body; everything suddenly feels so easy and you’re shocked by how hard it was up until that moment. These moments aren’t lasting very long and I wish there were more of them but it’s something.
I realise that I’m not giving this progress the recognition it probably deserves but I’m really not in a place where I can be enthusiastic and optimistic; the most I can manage right now is one foot in front of the other. My depression is worse than ever but at least it’s real. And I’m doing the best I can. That has to be enough.
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.