Posted on March 12, 2018
So, while this isn’t specifically a post about mental health, it is about how my mental health affects my life and the things that I want to do so I think it’s still relevant and maybe useful to someone else. There still aren’t a huge amount of resources for people with Autism and music festivals aren’t a naturally autism friendly situation: they’re loud and busy and overwhelming. The obvious advice is to avoid the conditions that cause you distress but when you love music and live music, it’s not that simple. This thing that I love is also a great stress. So it has to be about balance. Am I having a good time? Is this taking more than it’s giving?
So, let’s begin. For those of you who don’t know, Country2Country is a country music festival in London, Glasgow, and Dublin. In London, it’s three days at the O2 Arena with little stages throughout the complex and a big arena show in the evenings. I love country music and I love the country music community in the UK so there are a lot of positive moments but a lot of stressful ones too. I thought I’d write out a little overview of the festival, the good points and the bad, and how the whole thing fitted into the picture of my mental health and experience of Autism.
The biggest consideration for events like these is my lack of energy, especially with my recently increased struggles with fatigue. Standing is a huge part of any festival and for me, standing for extended periods of time (and by that I mean more than a few minutes) results in shaking, dizziness, and overwhelming nausea. Not to mention the disproportional levels of fatigue that build and build until I physically can’t stand up anymore. Most of the shows are standing, especially the ones during the day. And like any concert, there’s the expectation that you stand, as if standing means you care more than someone who’s sitting. My fatigue has been so bad lately that I only went to shows where I knew I could sit down and even then, I really struggled. I had to really pick and choose what I could go to and that came down to an upsettingly short list. But I was determined to enjoy what I could manage.
My 2018 C2C experience began on the Thursday night with a Songwriters’ Circle where a group of songwriters take turns playing songs they’ve written (that have often been released by other artists) and sharing stories about writing them. I love these events: they’re usually pretty laid back and very inspiring. It is one of my favourite things to hear songs as they were originally written and to hear how they turned from nothing into something. I was almost at the back but I was just so happy to be there. The line up was Brett James, Luke Combs, Nicolle Galyon, Kip Moore, and Natalie Hemby who is one of my all time favourite songwriters so I was very excited and they did not disappoint. They played old favourites as well as new songs but I think everyone agreed that Natalie’s performance of her song, ‘Jealous,’ recorded by Labyrinth, completely stole the show. Although I must also give an honourable mention both to Nicolle’s performance of ‘Consequences,’ recorded by Camila Cabello, and Luke Combs’ new songs. And to round off the night in the most perfect fashion, I managed to hang out with Natalie for a few minutes after the show and she was even lovelier than I remembered. So with that as a first night, the standard was set pretty high!
My excitement was so high that I did crash afterwards. I was completely overwhelmed by nausea twice on my way home, to the point where I had to sit on the ground and just breathe until it faded. This is one of the side effects of my most recent medication (for depression) and it’s one of the worst I’ve experienced but once it passed, I was okay. The emotional energy I get from live music and from being inspired and from talking to these wonderful people is unlike anything else. I could live off that night for days, even weeks, and that’s without the rest of C2C. It’s like feeding a dying fire; I come back to life.
Having had to go back home to Brighton, Day 1 of C2C began with travelling into London. My first event of the day was a very exciting one: an exclusive listen to The Shires’ upcoming album. I’d applied for a ticket and not gotten one but one of my friends in the UK Country community offered me their plus one. I can’t put into words how much that meant to me. I’ve been listening to The Shires since their first single came out and I actually went to one of the events they held when releasing their first album. I’ve already said it but I absolutely adore the UK Country community: I’ve met so many wonderful people (and now great friends) while queuing for gigs or while waiting in meet and greet lines and it is just the kindest, most generous group of people. For this event in particular, I saw so many people offering their tickets to people they knew desperately wanted to go and I was so touched to witness that. Personally, I had three people offer me a ticket because they all knew how much I wanted to be there. How amazing is that?! You’ll get no spoilers from me but it was better than I’d hoped it would be and I felt honoured to be there. Ben and Crissie are such lovely people and it has been so special to watch their journey up to this point. I’m honestly so excited to listen to all of these new songs over and over when the album comes out.
We weren’t allowed to use our phones in the session so, for the purposes of this blog post, I took a photo of The Shires appearing in the official highlights video.
I genuinely loved hanging out with everyone and catching up afterwards but it wasn’t long before I started to struggle. I powered through for a while but when my legs started to shake, I had to call it and headed back to where I was staying, although I did have to sit in North Greenwich station for a while because the shaking and dizziness got so bad. I would love to be able to wander around and spend the day listening to artist after artist but it’s just too much for me: my lack of energy, the constant high level of noise, and the overwhelming amount of people. With the latter two, it’s like my brain becomes overloaded and that can trigger a meltdown. I haven’t written about meltdowns very much so far on this blog (although I mentioned them here – a more in depth post is on the list, I promise!) but one way to explain it would be to imagine tapping on glass that has a crack in it. While one knock doesn’t do much damage, they build up and eventually it shatters. That’s how incoming sensory information feels to me. When I reach overload, I experience extreme anxiety and that can lead to crying, screaming, self harming, etc. Obviously that’s not something I ever want to experience in public, with people that I don’t know, where I don’t feel completely safe, so I have to be aware of how close to that point I am and retreat to a safe place when everything starts to feel too much. I went back to where I was staying and had a couple of hours of quiet time before heading back to the O2 for the arena show.
Kelsea Ballerini was my priority with Tim McGraw and Faith Hill’s headline set coming in second; I would have to assess my capabilities throughout the night. Getting into the O2 Arena always stresses me out: there could be a problem with the ticket, they might not let me take my bag in, the metal detector could go off and they’d want to pat me down… All of those things cause me a lot of anxiety before going into a concert but fortunately everything went smoothly this time (having said that, that anxiety still takes a lot out of me, even when the things I’m worried about don’t come to pass). It always surprises me that people can’t seem to tell how anxious I am because to me, it’s everything. It’s all I can think about. But as I said, it was simple, so that anxiety didn’t turn into anything else.
“Can I be Kelsea Ballerini when I grow up? What a fab show. I loved every second of it. I may have cried a little bit because I want to write songs and sing them too and I want it so badly but that’s not necessarily a bad thing. We are made to love things and I love music unapologetically.” (x)
Kelsea Ballerini was fantastic. I’ve now seen her three times in the last year and she’s such a great performer. I got completely lost in it and that was wonderful, even if I did cry a bit because I want that to be me so badly – that’s not something I can ever really separate myself from. But I had a really awesome time, and I actually managed to lose myself in the music and not feel so self-conscious about enjoying myself. Normally, I can barely move for feeling so exposed to everyone’s opinions. So that was really fun. Also, we all need someone to look at us the way Kelsea looks at her audiences…
By the end of her set, I was feeling very shaky and since I wanted to be well enough for Sugarland the next night (I’ve been waiting eight years to see them live!), I decided to go home. That was derailed a bit by some stuff going on with a friend that didn’t exactly help my anxiety and by the time I got home, I was completely exhausted. As is normal after days and evenings of high emotions, it took me a long time to get to sleep but then I slept so deeply that when I woke up, I was so disorientated that a week could’ve passed. Apparently the previous two days had tired me out more than I’d thought because I slept for most of the day and only really managed to get up in time for the arena shows. I was pretty shaky and anxious but having some of my family with me definitely helped.
Sugarland were freaking awesome. One of my parents played me a few Sugarland songs about eight years ago and ever since, I’ve absolutely loved their voices, their songs, and their energy. If I’m jamming out in the car, it’s most likely to a Sugarland song. So we were both super excited when they announced that they were getting back together and even more so when they were on the line up for C2C. We sang and danced (while sitting down) through the whole thing and it was so, so fun. It couldn’t have been better. I mean, there were more songs I wanted to hear but I do understand that they couldn’t just keep playing until they’d performed their entire repertoire. Mostly… Anyway, I was and am a very happy bean for having finally seen them live. It was a dream come true.
“I didn’t think I could love Sugarland any more than I already did but after last night, I absolutely do. The show was incredible and after waiting eight years, it was a dream come true. Apologies to the people behind me for all the crazy dancing and dramatic singalong.” (x)
The headline act of the night was Kacey Musgraves who I have loved since her first album. When I bought my tickets, I decided that I wanted to see her more than anyone on the Sunday so I decided to push myself to stay for her and then not go the next day. I was okay with that trade off and it was worth it. I’d sort of forgotten how much I love her and her writing style and it was so great to hear both my old favourites and some new songs from the upcoming album. I struggled a bit with the graphics on the screens; they made me a bit dizzy and gave me a headache. But it was a great show and I can’t wait for her to come back to the UK in October. I was worried about being in the underground with masses of people so we left a little bit early and had a relatively easy journey home.
“Kacey Musgraves is a princess. I’m loving the new songs.” (x)
It was a good weekend, if a tiring one. I spent the next day in bed, tired and achy and a bit overly emotional, but that’s not an unexpected consequence of an event like this. It takes a lot out of me, on lots of different levels. Because of all the thinking and restricting and careful planning, it wasn’t too bad but I wish it were easier. I wish I didn’t struggle so much and I wish my abilities and my needs weren’t so incompatible with the way the world typically works. Being out in the world is stressful and overwhelming and most places don’t come with a built in quiet room to hide out in while I recharge. It doesn’t help that I find it really difficult to ask for support. I feel like I’m failing for succumbing to these problems and that I should be strong enough to power through, which I think comes from being diagnosed so late: I’ve spent my life thinking this way and it’s not an easy habit to break.
I hope that this has been helpful, or at the very least gives an insight into what it can be like to go to a festival such as Country2Country when you have Autism, when you struggle with your mental health. The positive moments are unrivalled but the difficulties are freaking difficult.
Category: anxiety, autism, event, mental health, music, snapshots Tagged: actuallyautistic, anxiety, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic spectrum disorder, country music, country2country, country2country festival, exhaustion, fatigue, kacey musgraves, kelsea ballerini, medication, meltdown, meltdowns, mental health, mental health awareness, music festival, natalie hemby, nicolle galyon, overload, sensory overload, side effects, songwriters, songwriting, sugarland, the shires, tiredness, uk country
Posted on March 7, 2018
About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.
FIRST NIGHT AND NEXT DAY
As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.
The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.
I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.
And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.
Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.
The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.
I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.
I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.
Category: anxiety, depression, medication, mental health, sleep, treatment Tagged: anti depressants, anti-depressant, antidepressants, anxiety, depression, dizziness, fatigue, lithium, medication, mental health, mental health blog, mental health blogger, mental health blogging, mental illness, nausea, psychiatrist, shakiness, side effect, side effects, sleep, venlafaxine
Posted on February 28, 2018
A few weeks ago, I went up to London to go to a concert with one of my friends. On the train, I’d started writing a new blog post (about getting a diagnosis – expect it soon!) and when I moved from the train to the bus, I kept going. Twenty minutes into my journey, a boy sat down next to me. I’m terrible at guessing ages but I think he was around twelve. I was in my own little world, typing furiously, when he asked me how long it had taken me to write “all those words.” It took me a moment to shift gears. I thought about it and said that I’d been writing for about an hour and a half. He looked half-amazed and half-appalled, which made me laugh. I told him that I like writing so it was fun for me. We talked for a few minutes before he asked me why I would want to put everything I’d written on the internet for people to see, which surprised me: I hadn’t thought he’d been reading over my shoulder.
I’ve been thinking a lot about that question. There are a lot of ways of answering it and I’ve been turning them over, trying to figure out which one is the best, which one represents my feelings in the truest sense. But maybe I need all of them to explain it: because I have this need to be honest, because I like to write, because I want to do something that matters, because I want to help people, because I’ll explode if I keep all of this inside me, because I want to be a part of changing how people see mental health, because I don’t want it to always be this hard… If I put something out into the world, maybe something will change. If I do nothing, I change nothing.
I’ve known some people who are very against giving people their hard earned secrets and while I agree with that in some areas (as much as I complained, doing the hard work in school subjects like Maths because the teacher withheld the shortcuts did mean I learnt more and retained it longer), I categorically don’t when it comes to mental health. If something I’ve learned can help someone else get a diagnosis or support with even slightly less struggle, then I will absolutely share it. Of course I resent how long it took and how painful it was to get to this point but that doesn’t mean I want someone else to go through the same thing. Imagine how quickly things would change if each person in the chain had it slightly easier than the person before. Feeling helpless is something I really struggle with and if there’s something I can do – anything I can do – to help, then I’ll do it. The damage that’s caused by the stigma and lack of understanding around mental health is irrefutable, in whatever form it takes. Not all suffering is equal but some people still seem to struggle with that, as if you have to go through certain things, certain examples of stigma or whatever, to be allowed to struggle. That’s just ridiculous to me. It’s like the “It’s just attention seeking,” response: if someone is asking for attention, maybe it’s because they need it. But that’s a rant for another day.
Getting back to the point… I have been so inspired by the positive, helpful things that I’ve seen people put out into the world and that’s what I want to do. That’s who I want to be.
Posted on January 28, 2018
A while back, a friend shared this article on Facebook and I couldn’t not share it here. I’m currently in the process of going through everything I own in preparation to move house and so I’m coming across a lot of things that I have previously loved. I’m being constantly faced with the decision to hold onto something or to let it go. So I resonated with this piece very strongly.
I thoroughly recommend reading it but here’s a summary. The author describes feeling sympathy for inanimate objects, from “the guitar that doesn’t get played anymore” to “the once loved camera that has now been displaced by a newer one.” And the thought of an object being discarded causes great anxiety and sadness.
I’ve struggled with this all my life. As a child, all my toys had personalities and thoughts and emotions but that hasn’t faded as I’ve grown up even though I no longer play with them. They’re all still in my cupboard, neatly stored in boxes and bags. I feel guilty about that, that it must be uncomfortable and claustrophobic, but it’s better than throwing them away. That would be the ultimate betrayal. Imagining them in a bin or landfill fills me with such overwhelming anxiety and guilt that I can’t think properly. But it’s not just toys; it’s everything. I have a draw full of my old phones (how can I go from carrying them around twenty four seven to throwing them away?), a box of broken Christmas ornaments (it would be so callous to throw them out just because they’re not perfect anymore), my old school jumper, and so on and so on and so on.
Throwing things away is hard for me. I have this anxiety about letting things go, like I’ll lose parts of myself. Anything that has some meaning to me, I have to keep. It’s similar to how I write everything down and take a million photos. It goes with my difficulties around identity, a big part of BPD, and feeling like I have no idea who I really am. So I’m probably assigning aspects of my identity to physical objects in response to that. It certainly doesn’t help with all of this. And I wouldn’t be surprised if there’s a link to the difficulty I have in managing the strength of my emotions. I’ve talked about this before: how strongly I feel emotions and how I sometimes feel other people’s emotions. I’d always assumed that it was another facet of that.
The article discusses some other potential causes:
“There is some evidence to suggest that OCD and Synaesthesia are possible causes. Put simply, Synaesthesia is a neurological condition where the senses are confused. So someone with it, may smell a taste, or see a particular colour when thinking of a specific number. Some people have a form of Synaesthesia known as Personification. This is when a personality or emotion is attributed to an object. It would appear that there is a higher tendency for those on the autistic spectrum to have Synaesthesia in one form or another.”
The link to Synaesthesia is an interesting one. I do have some Synaesthesia-like experiences: with some sounds, I experience specific tastes or sounds. The sound of 7 chords leaves a metallic taste in my mouth so strong that I avoid those chords as much as possible and working on the production of my songs can be a bit of a minefield: high frequencies, like cymbals, are yellow while lower frequencies are dark colours (different depending on the instrument) and the colours in the song need to be balanced for me to be happy with them. It’s hard work and often leaves me with a debilitating headache.
I don’t know what the answer is or whether there is one. But I think the more we talk about this stuff and the more normal it becomes, the less we struggle against it. That takes up so much energy and emotion when living with these things is hard enough. That’s kind of why I started writing all of this stuff down, to feel less alone and hopefully make other people feel less alone too.
(Left: me and my toys when I was about eleven. Right: confetti that I kept from an amazing concert.)
Category: anxiety, autism, identity, response Tagged: actuallyautistic, anxiety, autism, autism awareness, autistic, autistic adult, autistic spectrum disorder, clothes, empathy, holding on, inanimate objects, letting go, mental health, mental illness, personification, possessions, sympathy, synaesthesia, toys
Posted on January 25, 2018
My first battle with hair pulling ended after about nine months when somehow, I managed to will myself to stop pulling. Finding my first bald patch, about the size of a 2p coin, had seriously freaked me out and so I’d been determined to stop. The first few days were absolute hell. It was like my fingers were magnetically attracted to my head and the longer I didn’t pull, the stronger it became. Have you ever held two magnets close enough that you can feel the pull between them? It was a bit like that but all through my body. I won’t lie, the thought of shutting my fingers in a door so that I physically wouldn’t be able to do it did occur to me more than once. I couldn’t concentrate on anything; my whole brain was focussed on not pulling out my hair. It becomes a habit and you do it without thinking about it so when you try to stop, you have to think about not doing it all the time, just in case you slip up. And then the need to do it just overwhelms everything.
I’m not sure that feeling exactly faded but I learned to compartmentalize: I managed to cram it into a box and think around it. That sounds impossible now. When I couldn’t do that, I tied my hair up in a ponytail and allowed myself to pull the hair out of that, the resistance from the elastic band fulfilling some of that need. But I wasn’t allowed to pull it out. It wasn’t perfect but it did keep me from relapsing. For a while, that is. I didn’t pull for over a year but then I started again. I’m not even sure why, if I’m honest. I think I was tired. I was tired of fighting it. The urge to pull hadn’t gone anywhere and suddenly I was back in that vicious cycle, pulling and pulling and pulling.
That was about eighteen months ago. I’ve tried all my old tricks: wearing a hat, playing with fidget toys, fiddling with my spinner ring. But so far nothing has really worked. The hat worked best but the anxiety of not being able to get to my hair almost sent me into a meltdown and at the moment, pulling out my hair is the lesser of those two evils. I guess it’s not surprising, considering the amount of anxiety I’ve been dealing with recently.
In the last couple of weeks, I tried (again, hence the 2.1) to stop. In some ways, I was lucky the first time round: when I was pulling, I tended to pull from a point that was hidden by my hair most of the time. I mean, it still sucked but at least I didn’t have to deal with anyone else’s reactions. But this time, I’m pulling from all over my head: my fringe, my parting, my hairline… Literally everywhere. I’m triggered by a change of texture in my hair, from smooth to almost crunchy (if you have any advice on ‘fixing’ this, please let me know!) and that’s not specific to one area. And that means it’s much more likely to be noticed. Maybe it’s vain but that’s my motivation for stopping and I figure any motivation is good motivation.
So last week I tried to redirect my pulling away from my parting and my fringe. I was ‘allowed’ to pull from other areas but not from those two. I thought I was doing okay until I realised that I was chewing the inside of my cheek, with the effort or the redirected urge I don’t know. I stopped as soon as I realised, although not before it had bled quite a bit. Again, I thought it was all okay until a day or so later when the inside of my cheek started to hurt. I figured it was just healing but within a few hours, the pain was blinding. I’m writing this out and thinking, “This is ridiculous. You’re exaggerating. It was just a little gash inside your cheek.” I’ve always been sensitive to pain and easily overwhelmed by it but I don’t think that matters. In all seriousness, it was so bad that it made me cry (which only made it worse because, obviously, you move your mouth when you cry). It was that strong. For three days, it was so bad that I wasn’t able to do anything. I was barely able to eat, or drink, or talk. I almost cancelled an event I was looking forward to because the thought of having to talk and smile all evening was unthinkable. I woke up on that morning feeling a little bit better so I did decide to go but it was still very painful.
A few days on and I’m mostly pain free. That was not something I’d expected when I made the decision to try this again and it was really upsetting. I’m not sure when or what I’ll try next but I’m sure I’ll find something.
Lesson learned: Be careful of where you redirect the urge and/or the effect that your attempt is having.
Posted on January 10, 2018
The last year has been really hard.
I’ve struggled with depression for a long time now and while I knew what it meant to be hopeless, I’d never really felt it until now. And that made me realise that I hadn’t had a clue. I’m starting to think that it’s something you can’t truly understand until you’ve experienced it yourself. I don’t think I can even really describe it. It’s unlike anything I’ve ever felt and sometimes words just aren’t enough. Sometimes they aren’t big enough to fit around the feelings.
Talking about this makes me very anxious. I don’t want people thinking that I’m not grateful for the things I have because I am. I really, really am. But that’s not how it works. Depression and hopelessness have little to do with the reality of your life. Good things can be happening but, in my experience, the feeling is so strong that it can overpower everything.
So, having said that, I thought I’d share something I wrote when I felt overwhelmed by that feeling:
“And I realised that this is how life is. It’s one bad thing after another and there’s nothing I can do about it. I’m going to feel like this forever so what’s the point? What’s the fucking point in trying to be happy? That was my turning point. I felt the world shift. Everything felt really clear. I don’t know how I didn’t see it before. I don’t know why it took me so long.
I’m not sure there’s anything that can change this. So now what? I’ve been staring at that question for ten minutes and I have no idea what comes next. Moving forward is agonizing and I can’t go back. So I don’t know what to do. I’m stuck. And all the while, time is passing, so easily. It’s like water and water always finds a way to get to where it’s going. Is this drowning? Is this what drowning feels like?”
It’s so scary to feel that way. When misery is inevitable, nothing matters. Whether it’s eating, getting out of bed… Everything feels pointless. There’s a stillness, a finality to the world. I felt like I had disappeared. And while I’m not in the eye of that storm anymore, it feels like a bit of a before and after moment. My perspective has shifted, everything feels a bit different now. I’m not the same person as I was before that feeling. I still haven’t figured out how I feel about that.
One day I’ll write more about this but for now, this is all I can do.
Posted on January 7, 2018
Warning: This post will contain spoilers for Turtles All The Way Down by John Green. This is not so much a book review as it is a collection of my thoughts about a particular book so I will be talking about the characters and the storyline in some detail. Hopefully it will make sense. If you’ve read the book or don’t mind spoilers, read on but if you want to read the book (which I highly suggest you do) and watch the events unfold, go and do that first. And then maybe you can come back and read this…
As I said in my post about New Years Resolutions, I really want to get back into reading. When I was a kid, I inhaled book after book after book and I have so many memories of forgoing sleep, just so that I could finish whatever story I was in the middle of. I really loved to read. It was my favourite thing. But somehow, with university and my mental health and the rollercoaster that has been my life for the last few years, reading sort of fell off my radar and I really miss it so one of my New Years Resolutions is to try and get back into reading. I want to rediscover what I loved about it. This was the perfect book to start with, even though it hit me with a tidal wave of emotions and I’m still recovering a couple of weeks later. But I think that’s how reading is for me, at least for the moment.
From the moment I heard that John Green’s new book was about a girl with OCD, I knew I wanted to read it and knowing that he has very personal experience with OCD made me even more excited about it. I’ve read several of his books (I especially loved The Fault in Our Stars) and I’ve always really connected to the voices of the main characters. And that was what made reading Turtles All The Way Down such an emotional experience. I read it in one sitting (apart from the first chapter – I realised I was going to read it in one sitting and so I needed to plan for that). I don’t think I’ve ever related so strongly to a book, which is a really big deal since I’ve been struggling to find a book I relate to at all. I found it to be a really true, really full account of dealing with a mental health problem. I’ve always struggled to work out where OCD fits into the mosaic of my mental health so I found this book really helpful in that sense. It shifted a few things in my brain and helped me understand myself a bit better. I’m very grateful for that.
The story is narrated by sixteen-year-old Aza. She’s quiet and thoughtful, trying to manage friends, school, and planning a future, all while struggling with constant anxiety about bacteria, infection, and dying from Clostridium Difficile Infection (also known as C. diff). She describes the anxiety as ‘thought spirals’ or ‘invasive thoughts’. She feels like she has no control over her thoughts, describing them as “not a choice but a destiny,” and often the only way to control them is to check and clean a permanently open cut on her finger, proving to herself that she doesn’t have C. diff.
I love Aza and I really, really related to her, to how she thinks, how she navigates the world. I’ve always thought of my thought spirals as black holes but the descriptions match up pretty closely. And I swear, some of the things she says could’ve been pulled from my own thoughts:
We struggle with a lot of the same things, from the littlest things to the biggest things. Like me, she struggles with her sense of identity; she talks about her “irreconcilable selves” and describes her search for her self as opening Russian dolls, looking for the final solid one but never finding it (I can definitely relate to that, although my current metaphor is a house of mirrors). Like me, she’s untidy, something that flies in the face of a huge OCD stereotype. And like me, she struggles with her body, with having a body: “I disgusted myself. I was revolting, but I couldn’t recoil from my self because I was stuck inside of it.” Finding all of these things in a character feels like such a big deal. I don’t think you can really know how important it is to have a character you relate to until you can’t find one.
The book could easily fall into the cliché of ‘girl with mental health problem meets boy and suddenly everything is better’ but fortunately, it doesn’t. I was so, so relieved. Aza and her best friend, Daisy, find themselves investigating the disappearance of Russell Pickett, the father of Aza’s childhood friend, Davis. Aza and Davis become very close very quickly but that only makes things more difficult for Aza. He means a lot to her but, as she says, the “actual mechanics of it” are really hard for her. Touching and kissing send her into a panic, a spiral that tightens and tightens. And that’s really hard for her: “I can’t have a normal life if I can’t kiss someone without freaking out.” As much as she wants to be with him, as hard as they try to make it work, her mental illness is just too much. It might sound strange but that is incredibly comforting. Despite the fact that we all know a relationship can’t magically reset your mental health, there still seem to be so many stories where that is exactly what happens. Maybe it’s because the writers want to believe that, for themselves or for someone they care about. But it’s not the truth. To know that there is one story – one more story – out in the world that demonstrates that is a relief to me. I know that my mental health prevents me from being in a relationship regardless of all other factors; seeing someone else experience the same thing helps me, even if that person is fictional. Whether it’s just for now or forever (“I don’t know if I’ll ever be able to.”), that makes me feel a little bit less alone.
The real love story is in Aza and Daisy’s friendship. I fell in love with Daisy and their friendship from the first mention. I loved that she knew when Aza was struggling and just how to help her: “She’d straightened something inside me.” I was almost giddy with excitement to find such a supportive friendship. But then they both get into relationships and they start to drift. Aza’s mental health also starts to drop. The ritual of cleaning her finger becomes less and less effective. The spirals tighten, the voice of her OCD gets stronger, and her desperation increases, leading her to drink hand sanitizer in the hope that it will prevent her from getting sick. Driving home from school one day, she and Daisy get into a vicious argument during which Daisy calls her “extremely self-centred”. I found all of this really upsetting; my stomach kept twisting, so much that it hurt. I was so attached to their friendship that seeing it crumble was really painful. It results in Aza hitting the car in front and at the hospital later that night, the feeling of being surrounded by bacteria is just too much for her and the thought spirals overwhelm her. I don’t want to go into too much detail because you should really just read it. It’s so well written and I related to it so strongly.
After that, Aza has to spend a lot of time and energy on recovering from that. It’s scary and difficult and she feels very fragile but slowly, things do change. She and Daisy rebuild their friendship and while it’s so similar, it’s also very different to how it was before. They talk and they talk properly; those conversations are some of the best in the book.
But as wonderful as that is, it doesn’t solve Aza’s struggles. “Everyone wanted me to feed them that story – darkness to light, weakness to strength, broken to whole. I wanted it too.” She still has thought spirals; she’s still so terrified that she can barely talk about it. Her life – and her future – feel suffocated by her anxiety: “I could never become a functioning grown up like this; it was inconceivable that I’d ever have a career.” This process feels so real to me. I’ve hit breaking point after breaking point and I always expect to feel better, or lightened, afterwards but then all the problems are still there and that can feel devastating. Accepting the reality of her mental health is one of the biggest and most difficult struggles: “I would always be like this, always have this within me. There was no beating it. I would never slay the dragon, because the dragon was also me. My self and the disease were knotted together for life.” But, despite all of that, you can see the evolution in her thinking. She manages to say yes to things that scare her, she has good days, and her relationships get stronger. It’s subtle but her self worth improves too: “You’re the storyteller and the story told. You are somebody’s something, but you are also your you.” That is so much more important than if she’d made massive strides because it’s so real. That progress is slow and subtle and sometimes we don’t even see it happening. But when it’s written out on paper, you can see it and it’s a really good reminder that it’s there. It gives me hope.
Her relationship with her Mum is another thing I really liked in the book. They have a close relationship (“I could always feel my mother’s vibrating strings.”) and she’s a good mother but she says the wrong things sometimes and her concern can just feel like another layer of pressure for Aza. Over the course of the story, they get better at communicating and she learns what helps and what doesn’t, and Aza gets better at telling her. That’s such an important process and I think it sets a really good example: mental health problems can be really hard to understand, on all sides, and we don’t always get it right. Getting it wrong doesn’t make you a bad person; you just have to learn from the mistakes. And communicate. Towards the end, they have a really important conversation where Aza says, “I can’t stay sane for you…” and I really want to highlight that moment. I had a very similar conversation with my Mum. I think that people in our lives ask us to do things for them, thinking that they’re helping you, motivating you, giving you something to live for, when in fact they’re just adding more pressure to an already difficult situation. It’s not their fault – they’re just trying to help – but it can make things worse and they won’t know that unless it’s explained to them. So I think that was really good to have in this book.
Something else I related to was the fact that Aza’s father died several years earlier. When it comes to the events in the story, it’s not particularly relevant but at the same time, it’s very relevant (bear with me). It’s a massive part of who Aza is (it’s interesting that, from an outside perspective, we have a stronger sense of her identity than she does). She keeps her Dad close, driving his car, holding onto his phone to look through his pictures, talking to him… “I thought about how everyone always seemed slightly uncomfortable when discussing their fathers in front of me. They always seemed worried I’d be reminded of my fatherlessness, as if I could somehow forget.” My god, I relate to that. I can’t forget, not for a second. It’s painful but at the same time, I treasure it. I don’t want to forget. It’s part of who I am: “To be alive is to be missing.” It’s one of those before and after moments in your life; it changes you. It was comforting to see my experience (“And the thing is, when you lose someone, you realize you’ll eventually lose everyone.”) reflected back to me in someone else. As I’ve already said, it means so much to me to find a character I relate to so strongly. It makes me feel less alone. It makes me feel more real. “I remember after my Dad died, for a while, it was both true and not true in my mind… My father died suddenly, but also across the years. He was still dying really – which meant, I guess, that he was still living too.” Words like these are such a comfort to me. Aza imagines the moments they should’ve – or could’ve – had and they’re so clear that sometimes she forgets they didn’t happen. I can definitely relate to that.
Something I love about John Green’s writing is how he brings attention to things that are often overlooked or taken for granted: “It’s a weird phrase in English, in love, like it’s a sea you drown in or a town you live in. You don’t get to be in anything else – in friendship or in anger or in hope. All you can be in is love.” He weaves little things – or the little links between little things – into his stories that make the world more intricate, more real. The characters talk about the stars and Kurt Gödel. They have revelations about turtles and intersecting tree branches. Those things, for me at least, mean as much to me as they do to the characters. I mean, I am a space nerd and at least seventy percent of my thoughts are about metaphors but these things, these connections create so many layers to the story. As Aza says, “The world is also the stories we tell about it.”
After seeing what a huge impact this book had on me, my Mum read it, also in the space of a couple of days:
This story has also given me so much. It has helped me to better understand the feelings and anxieties my daughter lives with, and more importantly, another context to talk with her about them. (After reading this I realised that all the quotes she has chosen to include, are ones I have found particularly helpful too). I feel indebted to John Green for this story, for the hope I see it bring to her, and hopefully others too, for the understanding it can give parents and others supporting those with mental health issues, and for giving her a reason to read again. The way he closes the story also give me hope, for the future I wish for her.
It surprised me, how much she loved the ending since I’m still not sure how I feel about it. But I’m so glad she loved the book and that she got so much out of it.
This book means so much to me and I’m really glad it’s the book I chose to get back into reading. It’s definitely one that I’ll hang on to, carry around… It was always have a place on my bookshelf. There’s so much in it, multiple storylines that blend into each other. There’s elements of mystery, elements of romance, family and friendship, identity, loss… And it shows how everything affects everything else. The language is beautiful and brutal and real. I related to so much of it and it put so many of my thoughts into words. I love how he describes everything: he uses phrases like ‘swimming up from the depths’ and ‘sensorial planes’ when talking about thoughts spirals which is just so true, in my experience at least. There will be criticisms – there always are – but this is the book I needed exactly when I needed it and I will always love it for that.
There is so much more I could say – there’s so much I haven’t even mentioned – but I’ll stop there. So I’ll leave you with a quote from Aza’s therapist, who reminds me a lot of my own therapist. She says a lot of good and important things throughout the book but this is my favourite, and my favourite of the book:
“In some ways, pain is the opposite of language… And we’re such language based creatures that to some extent we cannot know what we cannot name. And so we assume it isn’t real. We refer to it with catch-all terms, like crazy or chronic pain, terms that both ostracize and minimize. The term chronic pain captures nothing of the grinding, constant, ceaseless, inescapable hurt. And the term crazy arrives at us with none of the terror and worry you live with. Nor do either of those terms connote the courage people in such pains exemplify.”
“It often dwells in cliche, but only as pop songs and epic poems do, mining the universal to create something that speaks to the familiar rhythms of the heart. At one point Aza thinks about how the string from one musical instrument can cause the string of another to vibrate, if it’s the same note. That’s what this novel does. It will pluck the strings of those in tune with it. It will resonate with, and comfort, anxious young minds everywhere. It might just be a new modern classic.” – Matt Haig, excerpt from his review of Turtles All The Way Down for The Guardian (x)