Posted on June 9, 2018
In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.
Here are some quotes from the video:
Posted on May 21, 2018
(Blog Note: I was hoping to post this yesterday but I just had to take a break from everything so it’s a day late. Sorry!)
As many of you will be aware, this last week, 14th to 20th May, was Mental Health Awareness Week and although I fully intended to have a series of mental health related posts ready to go up, life conspired against me to make that impossible. A big part of that was putting my first single out (available hereeeeeee!) so I’m not complaining but it has been stressful and taking up a lot of my brain. So my posts have been a bit all over the place – I’m working on that, I promise. But I did want to acknowledge this week because it is important.
I have seen so many social media posts this week where people have shared their stories and struggles with mental health and I’ve been blown away by each one. Sharing this stuff is such a big deal and I’m in awe of everyone who chooses to do so. This sort of stuff can make you feel like the world is shrinking around you but feeling understood opens it back up; it’s incredibly healing. I didn’t know how much I needed it until I found it. In my experience, talking about all of this has gotten easier, over time and with ‘practice,’ but it’s still hard. I still find myself hitting an invisible wall, choking on the air in my lungs, knowing that everything might change if I say the words out loud. It’s happened before. But I know that that’s the fear talking. And most of the time, I know better than the fear.
If you’ve followed me for a while, you know that I live with Autism Spectrum Disorder, Borderline Personality Disorder, Depression, Anxiety, Social Anxiety, and Obsessive Compulsive Disorder, although I wouldn’t blame you for losing track. My posts tend to jump around a lot, between different experiences and different diagnoses. Plus, things can change over time. Over the last twelve months, I’ve struggled particularly with the OCD, the anxiety, and the depression – the depression most of all. This time last year I was in a really bad place and one of the consequences of that was the decision to change my medication; it wasn’t the right thing for me anymore. Since then, I’ve been trying to find a new one without much luck; the side effects have been a rollercoaster ride and most of the time, I’m too numb to really feel any of my emotions. True, I’ve had very few meltdowns but, if meltdowns are the price of feeling things and therefore feeling like I’m actually alive, I will take them. So I’m not done with the medication search. Not yet.
I guess I’m surviving. I’m getting through. Hopefully, by next year, it will be more than that.
This week might have been about speaking out but that doesn’t mean it’s the only course of action that requires courage. Simply living with mental illness requires courage and as long as you are doing what you need to do to be safe and happy (or what will get you there), that’s all that matters.
Category: about me, depression, event, medication, mental health Tagged: anti depressants, antidepressants, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, depressed, depression, medication, mental health, mental health awareness, mental health awareness week, mental health awareness week 2018, mental health blog, mental health blogger, mental health blogging, mental health week, mental illness, obsessive compulsive disorder, ocd
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 September 23, 2017
From a very young age, I’ve had a fear of forgetting things. Not little things, like what I need to take with me when I leave the house, or the door code at university, but the details of my life: how I survived the traumatic breakup of a friendship, how I felt at the concert of my favourite singer, what I was thinking when I started going to therapy. The little details of the big events, the things that have made me who I am.
To that end, I kept diaries. I’ve done so my whole life but the catalyst for my compulsive writing occurred just before I turned nineteen, when I was forced to take a gap year because my anxiety, depression, and social anxiety had become so bad that I just couldn’t cope with the course I’d intended to do. Suddenly I had a lot of empty time and a lot of chaotic thoughts to fill it. So I started filling notebooks, with stories, moments, quotes, and memories that I was terrified of forgetting. I would write non-stop for days, until either I fell asleep over the pages, or my hand cramped up so badly that I just couldn’t keep going.
While it was clearly an odd behaviour, no one, not even myself, thought much about it. I’d always been a writer, having written my first ‘book’ before the age of six. I’d gone on to write a twenty thousand word story at twelve, and since then, I’ve experimented with poetry, essay writing, blogging, and pretty much any other kind of writing you can think of. Now, at the age of twenty-three, songwriting is my true love, but my passion has always been for words: to express, to describe, to explain. So writing a lot wasn’t weird.
But as my anxiety in particular got worse, I tried to write even more. I’d write down the most minute details: what I ate at every meal, the plot intricacies of the TV show I was watching, the lyrics of each new song I listened to. I was absolutely terrified of forgetting each detail that had contributed to the person I was that I felt compelled to write everything down, so that I didn’t lose one single puzzle piece. It was taking up all of my time, literally, and that was without anything particularly significant happening.
When significant things did happen – the disintegration of an important relationship, the death of my much-loved cat, the introduction of a new medication – the writing became a serious problem. Over that period of approximately a week, I wrote about ninety pages, and over twenty thousand words. It’s true that I was working all the emotion out, figuring out how I felt – for me, writing is the best way of processing stuff since I can’t write as fast as I think, giving me the time to really think everything through as I write it down – but it was taking over my life. Still, I didn’t think anything of it. It was what I had to do to get through some really hard stuff. And even if I’d wanted to, I don’t think I could’ve stopped.
In September 2014, I started university. Suddenly things were happening. A lot of things. I was commuting to London, meeting literally hundreds of new people, and taking a load of new classes on subjects I’d never studied before. I also had a huge amount of homework; I felt like I was working all the time. So trying to write about everything that was happening became an impossible task. But not doing it caused me suffocating anxiety. It was a catch-22, and it took me months to catch up with myself. In January 2015, this was diagnosed as Obsessive Compulsive Disorder.
In the last four years, I’ve written over a million words. Over time, with some good medication, a fantastic therapist, and a lot of hard work, I’ve become better at managing the anxiety and I’ve become better at managing the compulsion. I no longer need to write down what I eat for every meal, what I do every minute of every day, although I still struggle against including every song lyric I love (I’m a songwriter – it’s research, right?!). But having said that, I still need to write a lot about how I’m feeling and how certain events make me feel. It really helps my frantic brain slow down and understand everything that’s happening to me. Of course, there are still certain things that cause my writing to go into overdrive. For example, I wrote more than twenty pages after a recent ninety-minute therapy session.
I have a complicated relationship with my writing. Writing is something I enjoy, and keeping a diary is a positive experience for me. But it’s the compulsion to do it, the unbearable anxiety when I don’t, the constant panic that I’ll forget things… These things make my life miserable. The longer I go without writing, the harder it feels to breathe. Having a complete history of your life, being able to go back to an important moment and remember how you felt… it sounds nice, right? Well, it would be if I had any choice in the matter.
Posted on August 12, 2017
This post has been hard to write. I’ve been writing various pieces to post for several months now but this is the one I keep avoiding. As much as I love writing, writing about myself – introducing myself with only a select number of words – is something I’ve always found difficult. Usually I find that words open everything up and make the world bigger but sometimes I think people are the exception to that. How do you fit something as big and intangible as a human being into something as small as a series of words? It’s kind of like when you take a photo of someone and even though it is them, it doesn’t look like them. But this is something I’ve wanted to do for a long time, so I’m going to try.
My name is Lauren Alex Hooper and I’m twenty-two years old. I’ve just finished my songwriting degree in London and am working towards my first release as a singersongwriter. Songwriting is my favourite thing in the world and the only time I feel truly calm is when I’ve finished a song. That’s one half of my life. The other half of my life is my struggle with my mental health. Of course, this does often overwhelm the other half. It often overwhelms everything. At this point in time, I have been diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder, Borderline Personality Disorder, and Autism Spectrum Disorder. These are still fairly recent (two years in the case of the ASD) but I’ve been living with the symptoms of them for a very long time. I’ve tried a lot of things to help with said symptoms. Some have helped, some haven’t. Currently I’m taking medication for the anxiety and going to Dialectical Behaviour Therapy, the best combination I’ve found so far. I hope to talk about all of this in more detail in future posts. If I start to write about it all now, we’ll be at ten thousand words in no time and while I don’t know much about blogging, I’m pretty sure that that’s not the way to start…
I’ve been writing about my experiences with mental illness for a long time but it’s only ever been for me. It’s only ever been a method of coping. But I can’t help thinking about how much it would’ve helped me to know other people felt the same way, had had similar experiences. For such a long time, I couldn’t understand why everyone functioned so much better than me, why I seemed to struggle so much more than everyone else and it wasn’t until I was sixteen that I heard someone talk about experiences that matched mine (it was Stephen Fry – but that’s another story). And that changed everything. I finally felt able to talk to my Mum because I had some context for what I was feeling and ever since that moment, we’ve been looking for answers and support. So I started to think about putting some of this writing (and there’s quite a bit of it) out into the world. Maybe it will help you, maybe it will help me. Here begins a new adventure.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of other mental health issues. I’m also a singer-songwriter 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.