Posted on January 18, 2020
Now that I’ve finished my assessments, I thought it might be an interesting idea to sit down and write about my experience of the first semester of my Masters Degree. Because I’m doing it part time (mainly to protect my mental health), I’m only doing one module rather than two, which is what the full-timers do. The module I did was called ‘Creative Process’ and it was four hours of uni time, a two hour seminar where we talked about different areas of the creative process and then a two hour workshop where we played the songs we’d written based on the ideas and concepts we’d talked about the week before. It was a really interesting module and I wish my mental health had been better so that I could’ve focussed and enjoyed it more.
I feel really lucky when it came to my group and my tutor.
My group was only about nine people (when the other groups were much larger as far as I know) and they were all absolutely lovely. We were all really different, both musically and life experience wise (but I guess that’s what happens when you get to Masters level), which was really interesting when it came to writing and socialising and… just everything. It was a completely new experience and one that I’m really grateful for. Up until now, I’ve mostly been surrounded by people my own age with similar experiences.
Everyone was so, so good, all in their own way. They all had their own style (some had particularly beautiful musical signatures, some wrote from interesting perspectives with thoughtful lyrics, and so on) and it was so interesting and exciting to see how they developed over the semester. We were and I know will continue to be so supportive of each other’s music and development as songwriters. It always felt safe to bring in something I felt unsure or insecure about and the feedback was always constructive and because the person wanted you to get better; I never once felt like someone was being mean or looking down on me. It was such a supportive atmosphere and I’m so grateful because I think that was a huge part of what helped me to grow so much as a writer.
I made two really good friends in particular, both of whom I’m still in the same group with to my absolute delight. They’re truly beautiful souls. One of them, Luce Barka, wrote this amazing song during the semester and has said she’s happy for me to share it with you guys. I really, really recommend it…
I also had a fantastic tutor, Isobel. She’s a really cool, independent singersongwriter, which I think made her an especially good teacher because she’s very immersed in the industry we’re all trying to get into, in her own, distinctive way. She’s also dealt with serious health problems (which she has talked about publicly so I’m not breaking her confidence or anything) so I felt like she was a really good tutor, especially for me. She understood, or had a kind of understanding, of what I deal with. She was a really, really great tutor, in discussions and when giving and guiding feedback. But for me personally – and this is my blog after all – she was incredible when it came to helping me manage the course against all of my issues. When my anxiety was overwhelming, she helped me adjust the tasks to make them easier while still allowing me to do the task and learn the skills. I am massively appreciative of how accommodating and generous and kind she was, even before she received the Student Support Agreement (the document with all my information and recommendations).
Anyway, she was amazing. I learned so much, obviously from the course but also from the way she delivered it and the feedback she gave me. I feel like I’ve grown so much as a writer and I feel like she’s a really big part of that. Plus, I’ve never had a teacher who was so understanding, who helped without hesitation, with just my word to guide her. I can’t properly express how much I appreciate that. It’s never happened to me before and it felt so wonderful to be treated as if it was something you just do, rather than being made to feel like a burden or an obstacle to be manoeuvred. So, as much as I learned (and I learned a lot), that is what I’m most grateful for and one of the things that I will always remember about this semester.
The first few weeks were really, really tough. After my massive meltdown in Victoria station, I was having meltdowns every day (as I wrote about here), which was having a big impact on my mental and emotional health, also leaving me physically exhausted. That significant meltdown was triggered by an email from the Disability Coordinator (who was also an Autism Specialist), suggesting a very last minute change of plan for our scheduled meeting which still leaves me bewildered. As an autistic person, sudden changes of plan are known to be highly problematic. That, plus my existing anxiety, caused a massive meltdown that took a very long time to recover from. And it left me feeling less than confident in her ability to support me even though we had had a positive first meeting and I had left feeling cautiously optimistic that this time it might be different. It then didn’t improve as actions promised at that meeting didn’t get done, leading to more meltdowns. So that was a real complication and painful part of the semester.
Having said all of that, I loved the classes. We learned about songcraft, collaborating, imposter syndrome, professional practice, perfectionism, and so much more. It was fascinating and fun and the briefs, while often stressful (with only a week to write the song), were interesting and challenging. I wrote some songs that I’m really proud of and I feel like my songwriting grew a lot because the briefs were challenging.
We watched this video in one of the classes and I thought it was really good so I thought I’d share it:
I loved it – loved getting better at songwriting – even the bits that pushed me and made me feel uncomfortable.
However, out of class was another matter. We were expected to do research that would later become the foundations of our assessment essay and presentation. Except whenever I asked, they wouldn’t tell me what the assessment entailed and just said it was ‘self directed learning’ so I didn’t know what I was actually researching, which caused me terrible anxiety. I created a reading list of books, articles, and interviews about creativity and songwriting but as hard as I tried to do the work, my OCD – my need to write everything down – battled against it. And usually won. So if I wasn’t writing, I was reading. I had no downtime. I was constantly anxious, like, end-of-the-world-anxious. And I felt like I was failing.
They explained the essay and presentation in the last couple of weeks but I still didn’t really understand. The language was complicated and vague and while I understood the general idea, the grading criteria was pretty ambiguous. I didn’t know what I had to do specifically to get good grades. I need clarity. It was incredibly stressful.
It took a couple of last minute meetings with my module leader to really understand what was expected of me but I was now facing a myriad of problems. The research I had been doing had little relevance to the subject I was writing about so I’d have to redo all of that, as well as actually write the essay and prepare the presentation. Plus we were in the final two weeks of the semester and the university would soon be closed for the Christmas holidays so I would have no way of contacting anyone for any support. I was wound so tight I felt like my spine might snap. I felt like I couldn’t breathe. I’m really grateful for those meetings but I just wish the assessment had been clearer earlier in the module so the research I was doing could’ve been more focussed. With all the problems associated with Autism, like chronic fatigue and chronic pain, time is something I have to be incredibly thoughtful about.
I worked every day of the entire holiday (apart from Christmas Day, which I spent with my family – something I don’t often get to do) but the assessments were always in my head so I felt like I couldn’t take a break or have any time to rest and recharge. I still didn’t feel sure that I was doing it right but still, I worked hard on it and gave it everything I had. I finished both the essay and the presentation with time to spare, allowing myself time to redraft and prepare, giving myself the best chance of doing well. I submitted the essay, despite big technical problems with the system, and I did my presentation to the best of my ability, despite finding presentations incredibly difficult. Now I just have to wait for the marks.
Now, having run through the whole semester (and having reflected a lot on the difficulties), I just wanted to share a couple of specific, positive experiences:
Overall, it was a very mixed bag. The good moments were great and made me feel amazing. I got a lot out of it. But I spent a lot – A LOT – of the semester in crippling anxiety and I had a lot of meltdowns. It was fucking hard. And the marks haven’t even come back yet. I’m terrified that I’ve done horribly. But I’m trying not to think about it. I’m just trying to get through this new semester. Which may be even more stressful than the last.
Category: anxiety, autism, holidays, meltdowns, mental health, music, ocd, university, video Tagged: anxiety, asd, assessment, assessments, autism, autism spectrum disorder, autistic, christmas, christmas holiday, creative process, elizabeth gilbert, essay, first semester, i'm with you, luce barka, masters degree, masters degree in songwriting, meltdown, meltdowns, mental health, mental illness, perfectionism, presentation, research, review, semester, songcraft, songwriters, songwriting, student support agreement, tedtalk, tutor, university, video
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:
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:
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 April 28, 2018
In my last session with my psychiatrist, we went over my experience of taking Lithium and decided that it was time to try something else. He actually said that he was impressed I’d held out so long so that’s something to be proud of. I think. I wasn’t trying to be a martyr: I’ve just had so many experiences of people brushing me off that I always feel like I have to have enough evidence to prove that it’s real. Anyway, he prescribed me Lamotrigine and because that can be taken with Lithium, I could switch without having to wait for the Lithium to get out of my system. So that was good. I’m getting increasingly frustrated by this process.
As always, this is just my experience. Please, please don’t ever mess around with your medication without the advice of your medical professional.
The first week was really tough. I swung sickeningly between hot and cold, had migraine-like headaches, felt nauseous and shaky and very anxious. I also felt the closest thing to depression that I’ve felt in a while. With the hope of the sleeping through the worst of the side effects, I had started out by taking it at night but straight away I found that it was affecting my quality and ability to actually sleep. I had several nights of barely sleeping until I changed to taking it first thing in the morning.
The main thing in the second week was the extreme fatigue. I slept long hours and found it difficult to wake up in the morning, then I struggled to stay awake but often fell asleep during the day. I was easily overwhelmed and felt anxious most days. The feelings of depression hadn’t dissipated either.
As prescribed, I increased the dose so there wasn’t much time for the side effects to settle. My sleep was still pretty disrupted. I slept restlessly but woke early and fell asleep during the day. I was still incredibly tired. I had periods of feeling very shaky and dizzy; at one point it was so bad that I couldn’t get out bed until the evening. I was still feeling anxious and depressed and although my concentration and motivation hadn’t been great up to that point, it became practically non-existent.
Again, I was sleeping a lot but still absolutely exhausted. I was also very anxious even though there didn’t seem to be a cause for it, which of course made the anxiety worse.
This week was my first week in Nashville so it’s hard to tell what was a result of that and what was a result of the medication. I was more anxious than I have been in months and it got to the point where I was questioning everything, even the things that I’m usually steadfast about. That was very distressing. The jet lag hit me hard and I was constantly exhausted, falling asleep in the middle of the day and still struggling to stay awake until a reasonable bedtime.
The second week of Nashville was a bit easier. I was still exhausted but the anxiety faded a bit as plans started to work out and produce results. That usually lessens some of the anxiety but there was still more than on a normal day and although I had one evening of feeling on top of the world (playing Song Suffragettes – see my Nashville post), I was still struggling to keep my head above the surface of the depression that felt like it was just waiting to drag me under.
During this week, I moved house, something I had been long (at the very least) apprehensive about. So, in the days before, I was anxious and unsettled and then the actual move was very difficult. I was almost too anxious to function and on the evening of the day we moved in, I had a meltdown for the first time in months. It was a horrible experience and for days after, I was fragile and shaky and emotional. I barely slept and even though I don’t eat much anyway, I barely ate at all for a few days. And at the end of the week, something – I don’t know what – triggered a new, suffocating wave of depression that really threw me. That was as low as I’ve been for a very, very long time. I was very depressed and kept bursting into tears; I felt like glass filled to the top with water that you only have to nudge slightly before it spills over. The smallest thing – nothing even – made me cry, or start laughing hysterically that then turned into crying. I was miserable and exhausted. In the midst of all that, we increased the dose but I honestly can’t tell what was medication and what was just life.
It took a while to get out of that depression, even just a little bit. And then I was back in the vague blankness that has been characteristic of my recent experiences with medication: it’s either anxiety and depression or nothing. There was a point when I thought that would be preferable to the extremes of emotion I’m used to feeling but now I know it isn’t. Feeling is everything; there is nothing worse than apathy. And that’s where I still am.
Another thing that I never even wrote down is that I’ve been experiencing muscle twitches, mostly in my legs. It’s not dramatic and it happens so infrequently that I didn’t even equate it with the medication until it had happened several times. It’s not an issue but I think it’s worth mentioning and something that I was concerned would get worse if we continued to increase the dosage.
But after speaking to my psychiatrist again, we’ve decided to try something new. Lamotrigine hasn’t been terrible but it hasn’t been good enough: my concentration and motivation are still terrible, I’m exhausted, and the anxiety and depression are still significant struggles. It hasn’t made anything worse but it also hasn’t made anything better, which is the point of them. So I’m trying a new medication. I know that Lamotrigine is there if I need to come back to it but I need something to hope for.
And a final note: if you’re struggling with medication, whether it’s your first try or your fiftieth, please don’t give up hope. This process is ridiculously long and complicated but when you find the right one, it’s so worth it. You can be you again but more efficient. And that is potentially it forever. You may never need to try another medication again. So this time – this struggle – is an investment. Try to hold on to that.
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)
Posted on December 31, 2017
It’s become a bit of a tradition for me to summarise the year on Instagram with a collage of photos and a sappy caption but since I have the blog this year, I thought I’d write something a bit more in depth (although I will still do my Instagram, fear not). I want to collect my thoughts and take a look at what I loved and lost and learned.
This has been a hard year, mainly because of my mental health. I struggled with my medication for a long time before having the worst meltdown I’ve ever had and that was the trigger for a really bad bout of depression that I still haven’t really recovered from. It’s not as bad as it was but it’s been really hard. Because of that, I decided to change medications and that process has swallowed up most of the year. Honestly, that’s been awful. I’ve been in a really bad mental place, it’s made me physically unwell, and probably the worst part is that it’s affected my cognitive functioning, making me unable to write. That has been unbearable. But it hasn’t been all bad, mental health wise. I confronted someone who really hurt me, I got involved with research studies into Autism, I applied to ‘Behind The Scars’ and talked openly about my experiences with self harm. I somehow got over my paralyzing anxiety about moving house and I’ve started communicating more with my family. So while it’s been a really difficult time, I can see that I have made some significant strides this year.
Another big thing was graduating university. I had always wanted to graduate with First Class Honours and while I expected it of myself, I still can’t quite believe that I managed it. I want to write something much more in depth about my experience at uni because there were a lot of ups and downs but ultimately, it was a great experience and I’m really proud of everything I achieved there. I also made some amazing friends who I will hopefully have in my life forever. The UEL graduation was stressful and exhausting but the ICMP graduation was satisfying and fun. And going out afterwards was a bizarre experience but I was proud of myself for defying my anxiety. My only regret about finishing uni and then graduating is that my depression overwhelmed them: when I found out I’d got a First, I didn’t feel anything. I wanted to be ecstatic but I couldn’t feel it. And yet, I would’ve been devastated had I not got a First. I’m trying to accept that situation for all it was though; I can’t change it now.
And then, of course, there is the music. This was obviously massively affected by my mental health but there were still some great moments this year. I wrote my most important song so far and I’ve been working on its release ever since (fingers crossed for early 2018) and that is so amazing to me. I’m so excited for it. I’ve also had some really fun recording sessions and I’ve had some awesome performing experiences: I got to play a songwriters’ circle with Lauren Aquilina, I hosted another songwriters’ circle at my friend’s charity benefit for TWLOHA, I played a showcase for a record label, and I got to play for my local Autism charity, Amaze. I mean, how cool is that? I also had another really special trip to Nashville. And last but certainly not least, I’ve been to some incredible concerts this year, including: The Shires, Sasha, East of Eli and Chyler Leigh, Country2Country, Tin Pan South Festival, Willemijn Verkaik, Kelsea Ballerini, Lady Antebellum, NADINE, and Maren Morris. Concerts are so, so important to me. Those are the moments where I really feel alive and so I always keep money aside for when they come around. They’re the only thing that I really spend money on.
I’m not sure whether it’s even possible to classify this year as a good one or a bad one. It would be easy to file it away as a bad year because of the difficult mental health stuff but there have been a lot of amazing moments. I went back to my two favourite places in the world, I listened to great music and saw some incredible art pieces, I saw my kittens all grown up, and I had some amazing experiences with the lovely people I’m so lucky to call my friends. I even started drinking alcohol for the first time; that’s been an experience! Thus far, I don’t really like it but I’m really, really, REALLY enjoying not feeling controlled by my anxiety, at least not in that area of my life.
Overall, this year has been a year of waiting. It really has: waiting for the medication to work, waiting to feel better, waiting to release my first single, waiting to move, waiting to graduate… Even when I was still at uni, I was counting down the days until we finished (because I didn’t want to leave and I was stressed about getting everything done in time). Always, always waiting. This year has been measured in seconds, minutes, hours, days, rather than experiences, far more than any other year. So that’s my hope for the new year: to wait less and do more. I know that many of these things were out of my control and when there were things I could influence, I did my best to do so. And I did some pretty cool stuff while I was waiting for other things. But I really want next year to feel different. I can’t remove waiting from my life but I’d like to not feel so stuck when I do have to wait.
“2017 was the year of waiting: waiting to release music, waiting to move house, waiting for medication to start working, waiting to feel better. It’s been slow and painful so I’m grateful to be moving on. But there have been some great moments this year too. I wrote some songs I’m really proud of, saw some amazing concerts, and went back to Nashville. I tried to see my friends as much as possible and worked hard on my mental health. Hopefully I’ll start to see some of that work pay off in 2018.” (x)
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
My second single, ‘Bad Night,’ is also now available on all platforms and is the first track from my new EP, ‘Honest.’