Posted on December 31, 2018
This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.
The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.
I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.
I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.
And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.
Having said all of that, there have been good days, as well as good experiences on bad days.
By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.
I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.
I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.
There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.
And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.
I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.
Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.
So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.
“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)
Category: animals, anxiety, autism, depression, event, holidays, medication, mental health, music, treatment Tagged: 2018, 2018 in review, amitriptyline, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, cat, claire wineland, clomipramine, concert, concerts, creative block, death, depression, family, friends, grief, halsey, happy new year, iceland, kitten, kittens, lamotrigine, life, lithium, maren morris, medication, mental health, mental health blog, mental health blogger, mental health blogging, mental health treatment, mental illness, moving house, nashville, new home, new house, new year, performing, pregaballin, singer, singersongwriter, song suffragettes, songwriter, songwriting, support system, taylor swift, treating depression, treatment, venlafaxine, writers block
Posted on July 21, 2018
Over the last twelve months, I’ve barely been performing at all. I just haven’t been up to it. My depression has been completely overwhelming and has only been compounded by trying to find a new antidepressant, what with all the side effects: at one of the few gigs I have done, I was getting so dizzy that I couldn’t stand up long enough to play three songs. So it’s been a struggle. But in the last few weeks, I’ve had two gigs – and two gigs that I really wanted to do – and so I’ve had to figure out how to do everything that that involves while still struggling the way I am. It was hard work and the heat didn’t help but I managed to do them and do them reasonably well all things considered.
The first performance was part of Brighton Soup. For those of you who haven’t heard of it, it’s a community event where four people (or organisations) pitch their ideas to improve Brighton and Hove. Everyone votes and the pitch with the most votes gets the money from the ticket sales to make their idea a reality. They invited me to play at their next event and it turned out to be such a special experience. I was so moved by all of the pitches and the general spirit in the room.
I was really anxious about performing – more than I have been in a long time – and my hands were actually shaking. I find that very disconcerting, not being in control of my body. I took a deep breath and tried to imagine it flowing through my body, imagine everything settling. That helped a bit, as did trying to really feel every line of each song as I sang it.
Before this unplanned break from performing, I felt fairly confident on stage and although I did get nervous, it all but disappeared the moment I started singing. It took longer this time but, by the time I finished my four songs, I felt like myself again. I’m not sure I could explain the process – from shaking mess to confident performer – but I could feel it happening and that, in itself, helped with my anxiety.
The second performance was at Disability Pride in Brighton. I got to play last year (despite technical difficulties, it’s still one of my favourite performing experiences) and I was SO excited to get to play again. It’s such a special event.
It turned out to be a pretty challenging gig. The acoustic stage was inside an inflatable structure, which needed a generator to remain inflated. The generator was so loud that I couldn’t hear myself at all. I was reassured by multiple people that it sounded great from the audience’s perspective, but I still really struggled with it. Had this happened a year ago when I was performing fairly regularly, it wouldn’t have bothered me as much because the more you perform, the more it gets into your muscle memory. So, if you’re struggling to hear yourself, you can rely on other parts of your body to judge how the performance is going: how your voice feels in your throat, for example. But during this ‘break’ from performing, that muscle memory has faded and so I was relying heavily on hearing myself. So it wasn’t as easy as it could’ve been. Plus it was stiflingly hot and I’ve always struggled with heat.
But having said all of that, it was one of the most supportive and most generous audiences I’ve ever played for and I felt so, so lucky to be there. I wish I could’ve given them a better performance. My sincerest thanks to everyone who made the event possible; I literally can’t put into words (I’ve been staring at the computer screen for an hour) how much it means to me.
The last few weeks have been a bit of a rollercoaster, but one that I’m really grateful for. I’d sort of forgotten how much I love performing but this has really helped to remind me.
Category: anxiety, event, music, tips Tagged: anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, brighton, brighton and hove, brighton soup, disability, disability pride, disability pride brighton, gigging, music, performing, singer, singersongwriter, singing
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.
Posted on February 17, 2018
What with the medication and the side effects and the day-to-day consequences of my specific Venn diagram of issues, I have been feeling incredibly unwell over the last several months. It’s been really tough: I’ve been dealing with nausea, dizziness, weakness, shortness of breath, shakiness, and so on. Having spent so much time and effort convincing people that a mental illness is actually an illness, that it isn’t less important just because the symptoms are inside your head, I think it’s easy to forget that these problems also have physical symptoms. I’m guilty of it too and I’m not very good at accepting that reality. But I’ve had to of late. Or, at the very least, try not to give myself such a hard time over it.
But this week I had my first gig in a really long time and I was going to do it, come hell or high water. The hardest thing has been not being able to do the things I love the most, namely singing and songwriting. That makes me a kind of stir crazy that I’m not sure I can put into words. So I did my absolute best to make sure I was ready, in both the health and music sense, and I thought I’d share some of the things I did in case they’re useful to anyone else.
Make sure your expectations are realistic – In the last six months, I’ve been offered a couple of gigs that I knew I just couldn’t do, regardless of how much I wanted to do them. I just wasn’t well enough. But this one was perfect: a short set, a relaxed atmosphere, lovely and supportive people… It was a really good opportunity to do this thing that I love so much without too great a cost to myself.
If it feels right, let those in charge know – I don’t think this is always necessary but when you know it could affect your performance, it can be a good move. It’s my default position to be open and honest and because I write songs about my experiences with mental health and Autism, they find out soon enough anyway but I’m also aware that people can jump to incorrect conclusions when they hear the word ‘Autism.’ So there are pros and cons but it’s something to consider.
Practice in small doses – There’s no getting away from the fact that you need to practice to be ready to perform well at anything. But it doesn’t have to be a huge, daunting black cloud that swallows up your day. I hadn’t been doing much consistent practice because I just felt so awful but I managed to build in fifteen minutes a day. It felt pathetic given that I used to be able to sing and play for hours but I’m trying to just acknowledge the thought and then put it aside. Even fifteen minutes was leaving me shaky but it gave me back some of my confidence and even though I don’t have another gig for a while, I am going to try and keep to this. It gives me more than it takes away.
Physically prepare your body – Make sure you’ve slept enough, eaten enough, and drunk enough water. These can be hard; I’ve struggled with all of them. But try to remember why you’re forcing yourself through it and do your best. It puts you in the best possible position to perform well which is, after all, the goal. Hopefully that motivation is enough.
Do whatever it is that gives you a boost and if you can’t do that, avoid the things that bring you down – I usually listen to music to inspire and energize me before a gig. They’re not necessarily happy songs but they are all high energy or high intensity. That helps me get into the right mindset to perform and that usually overrides whatever I’m dealing with physically.
If you need to stop, stop – I’ve been to multiple gigs where acts have had to call it quits mid set because of a terrible cold or whatever and every single time, the only thing anyone says is how impressed they are that the person got as far as they did. That may not always be the case but would it be better to push through and end up face planting onto the floor when the dizziness turned into fainting? No, it would not. Do what you can for as long as you can and then gracefully retreat.
Now I can’t prove that these things helped but I know they didn’t hurt. The gig went really well and it felt so good to be performing again. A couple of days later and I’m still tired and shaky but if that’s the price, I’m more than happy to pay it. For the first time in weeks, I feel like I’m in sync with my life; my anxiety has dissipated and I actually feel calm. That’s not something I can say very often.
Posted on August 21, 2017
On Sunday 9th July 2017, I woke up feeling very nervous. It was the day of Disability Pride in Brighton, the first event of its kind in the UK, and I was performing on the main stage just after two o’clock. Of course, I was really excited: it was going to be a great event, one I was really proud to be a part of. But my anxiety was very high. Other than the fact that I hadn’t played live for a while (finishing my degree has taken up all of my time), I felt anxious about whether I deserved to be there.
My presentation of Autism isn’t very obvious. I’ve been told many times that I don’t ‘look Autistic’ (a phrase that needs a whole post to itself) and I’ve always struggled with where I fit under the label of ‘disabled’. The legal definition is “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (according to the Equality Act 2010 if you want the source of that). So, yes, I am disabled but it’s very much an invisible disability and multiple experiences of that being questioned has made me very nervous of associating myself with the word. But I’d applied and been chosen to play so I tried to trust that.
Everyone was so nice, right from the moment I arrived. I met the stage manager, AJ, who was lovely and got ready to go on stage; I was starting to get back that excitement that I get from performing. But then my capo broke. For those of you not familiar with guitars, the capo is the little gadget you can put on the neck of the guitar to make it easier to play in different keys. It literally sprang apart in my hand. Not good. I needed it for every song (I usually have a spare but since I’d bought this one a week ago, I hadn’t worried about packing one). Half of my brain was desperately searching my repertoire for songs that didn’t need a capo and the other half was trying to figure out where on earth I could find another one. No one else seemed to have one so my parents (major shout out to them) ran off to the two guitar shops close by. I felt like I should be panicking but I was strangely calm.
Somehow a capo was found and then I was on. I’d originally had time for four songs but that had to be cut down because of the capo problems. But I didn’t mind. The atmosphere was so nice, so friendly, that I just wanted to get out there and play.
I’d agonized over what songs to play. I write a lot of songs about my experiences with mental health – it helps me process them, helps me make sense of it all – but I didn’t want to upset or trigger anyone. On the other hand, I wondered whether it was a good place to play them, somewhere where people might relate to them. In the end, I decided to play two of those songs with two more upbeat, positive ones. But with the stress of finding another capo, all coherent thinking disappeared from my brain and I was playing a song before I’d even decided to play it. Oh well. That first song was called ‘Bad Night’, about a particularly bad night where I couldn’t imagine how I would ever feel better. The second song I played was called ‘Invisible’, a really important song for me because it’s such an honest account of asking for help with my mental health and being repeatedly turned away. As I introduced it and told the story behind it, I could see people nodding and that actually made me well up a bit. Writing it was so hard that I hadn’t really thought about what kind of reaction it would get and so, to have people connect to it, connect to something that was so personal, it kind of blows my mind.
I’d hoped to play another song, to end my little set on a more upbeat note, but there wasn’t time. That was a shame but I was so happy to have played at all. All my anxiety had disappeared and I remembered exactly why I love performing so much. And I have never played to such a friendly, supportive crowd. It felt safe to sing those songs about difficult things and it felt safe to be exactly who I am. I hadn’t expected that and even though it’s now several weeks later, that feeling still almost brings me to tears. I don’t often feel safe outside my home but I did feel safe there.
It didn’t hit me until later but my favourite moment of the event (apart from the adorable little girl who stood right at the front, watched both my songs, and waved at me afterwards) was something someone in the audience called out between my songs. With all the stress beforehand, I hadn’t checked the height of the microphone stand and so I discovered during the first song that it wasn’t high enough. I made a joke about that as I adjusted it, about being too tall for the microphone, and someone from the audience called out, “the microphone’s too short for you!” It’s simple but it meant a lot to me. I often automatically put myself in the wrong, assume that I am too much or too little of something rather than looking at the situation for what it is. Here, it was simply a case of adjusting the microphone stand to match my height and it’s a little ridiculous to put all of that on myself, to let it reinforce a negative view of myself. I mean, it’s a microphone stand! But it shows how easy it is to get into a pattern of always seeing yourself as ‘wrong’, even when there isn’t a right or wrong.
Of course this isn’t always the case, but it was a good little reminder to be aware of my thought processes and be aware of what I’m telling myself. (I think it’s pretty easy to pick up that way of thinking when it comes to a disability or mental health problem, because you’re often different from the norm and you end up adjusting to fit into that. So it’s easy to feel ‘wrong’, simply because it’s not the same as everyone else. At least, I feel that way.) It’s often hard to remember that different isn’t wrong, especially when the way everyone else does things is praised as the ‘right’ way or the ‘best’ way. I regularly have to remind myself of that.
Anyway, I had a really great time at Disability Pride and I was so grateful to play. It really was one of the loveliest, most supportive crowds I’ve ever played for. I wish I could’ve stayed longer and explored more but my physical health hasn’t been great lately and even that little amount of time had completely exhausted me. But the little bit I got to see was incredible and I am so, so proud to have been part of the event, even in the smallest way. I really hope that this event can become an annual one. Thank you to everyone involved – you are all complete stars!
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 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.