Finding HopeDon’t You Lose Your Halo
Posted on June 8, 2019
The last few months have been particularly difficult, anxiety and depression wise. I came of my anti depressants and one of my anti anxiety medications with the intention of starting a new medication but starting that new medication has been a real struggle. This new low brought on by the withdrawal and the lack of meds has been possibly the worst I’ve ever felt. I’m aware that it’s affecting my thinking and my decision making but right now, the starting of a new medication just feels impossible. Just the thought of it triggers an autistic meltdown. So it’s safe to say I’m struggling.
BUT the last week has been better for exactly one reason: I got to see Maren Morris in concert! In fact, I got to see her twice! So that’s what I want to write about: seeing her and how concerts are something that can really help me when I’m feeling very low. There’s something about the energy that just lifts me, makes my body feel lighter and that’s so very valuable when I’m in this place.
My first show of the tour was Bristol. As I’ve mentioned in previous posts, if possible, I like to go to multiple shows of a tour because I get overwhelmed so easily. Seeing the show more than once allows me to really experience and enjoy all of it. Concerts are pretty much the only thing I spend money on so I’ve been very fortunate in this endeavour.
The show was incredible. I’d been feeling very, very depressed in the days leading up to the show and didn’t even want to go – it felt like it was wrong to want such a simple ‘fix’ to my low mood and like seeing such an amazing songwriter would hurt too much given that I haven’t been able to write a song in months (if not longer) – but as soon as Maren Morris took the stage, I started to feel lighter. It felt easier to breathe. She’s an incredible songwriter and performer and her voice is out of this world: I remember once describing it as sounding like a gorgeous sunset. Hearing the new songs was like hearing them for the first time and hearing the old ones was like a wave of nostalgia: they remind me of my degree, of my first trip to Nashville, of writing songs in my best friend’s living room, of a younger, less troubled version of myself.
The song that really got me was ‘A Song For Everything.’ This is what I wrote in my diary after the show:
“Given how emotional and tearful I was, I was crying by the first chorus. It just lifts my soul and makes me feel lighter, like I’m going to be okay, like I need to dedicate my life to writing a song like that and so I have to be alive to do it. I was breathless by the time the song finished.”
“I don’t often cry at concerts (it usually happens when I hear the songs again for the first time after the show) but this one just got me. My depression is the worst it’s ever been but tonight… helped. I could write a book about the emotions of the last few days but I’m so tired that even this is a struggle. @marenmorris, thank you for being there exactly when I needed you to be. Thank you for reminding me that there’s a song for everything and that maybe one of them could be written by me, but that I need to be here to write it. #girltheworldtour“
I had a day to recover before my next show, in London. At the freaking Royal Albert Hall. This is probably my favourite venue I’ve ever been to and it’s my ultimate dream to sing there one day. One can hope. And work hard. Anyway.
The day of the show, I cried all day. I was miserable, deeply, deeply miserable. I was on the edge of a meltdown all day but somehow I was holding it back because I knew if I had a meltdown, I wouldn’t be able to go to the show. Me and Richard (my best friend and writing partner) had bought the VIP packages, which meant we would get to meet Maren before the show and I couldn’t miss that. But even though I was looking forward to it, I was paralysed with anxiety. I didn’t know what to say or do and the fear of wasting the opportunity was so great that I couldn’t think. I couldn’t think my way through the problem and that was almost the worst part.
I cried all the way to London (listening to ‘A Song For Everything’ on repeat) and I only really managed to get myself together when I arrived at Victoria station. Holding onto that song helped somehow. I got to the Royal Albert Hall, met Richard, and we (all the VIP package holders) were all taken in for the pre-show Q&A and meet and greet. It went okay. I’m not gonna lie, I was actually shaking. It wasn’t specifically because I was anxious about meeting her – I’d met her on the previous tour and she’s absolutely lovely – it was more that I was worried about it going wrong, that I’d waste the experience by saying something embarrassing or meaningless. Looking back at it now, it went okay. It could’ve been worse, it could’ve been better. Maren was very sweet but I didn’t feel able to be as honest as I would’ve liked to be, for multiple reasons.
When the doors opened, we went to find our seats and discovered that we were FRONT AND CENTRE. At the Royal Albert Hall. For Maren Morris. I think that was when I first started to feel more excited than anything else – anxious, depressed, lost (“The depression was receding – just out of reach – and it felt easier to smile, even if it was a little slow and stiff.”). And all of that completely fell away when the show started.
It was one of the best shows I’ve ever been to. Maren is one of the best performers I’ve ever seen, her vocals are unmatched, and I love her songwriting more than I can properly express. The upbeat songs were so much fun and the slower songs were quiet moments filled with emotion. It might sound like any other concert (any good concert) but the energy was bigger and bolder and brighter than any other concert I’ve been to. I lost my voice long before the show was over but that didn’t stop me from singing along. And as I said in my diary, “I’m always self conscious dancing but sometimes, if all the stars align, the constant tension in my body releases and I can just move as my mood dictates. It’s not very elegant but it is fun.” She even had special surprises planned: performing ‘Seeing Blind’ with Niall Horan and bringing a string quartet (an all female string quartet!) on stage for several songs. The whole thing was magical. I never wanted it to end. But unfortunately it had to, although she closed the show with style: an amazing performance of ‘The Middle.’ Me and Richard have spent so many car journeys and writing sessions and just hours of our lives singing that song; singing it with Maren Morris from the front row of the Royal Albert Hall may be one of my favourite memories of all time.
Another snippet from my diary: “The performance was incredible and hearing everyone sing along just made my heart soar. It was all gone and I felt alive and light and happy. I was tired and achy but it was amazing.”
Getting home was hard. I had a huge adrenaline crash and all the negative emotions returned and that, combined with several unpleasant incidents on the train, had me in tears before I was even halfway home. I also struggle physically after concerts: my whole body hurts and that was starting to set in so yeah, getting home was a struggle. But I made it and my Mum was kind enough to prepare macaroni and cheese and ice cream (not together), which did help a bit. My brain wasn’t really ready to go to bed but a migraine was setting in (another side effect of concerts) so I didn’t have a choice.
“Yesterday was a very difficult day. The depression was bad; I shook, I screamed, I cried (probably seven or eight times). It was miserable. But in the evening, I got to see @marenmorris at the @royalalberthall and my god, it was like it was built for her voice. What a special artist in such a special venue. Somehow, me and @richardmarcmusic ended up with front and centre seats and the whole show was just incredible. Every second was fun, every second was amazing. I wish it could’ve gone on forever. The tears returned on the train and I cried most of the way home but I am so, so grateful to have been there, so, so grateful to have had that escape for a few hours. I will treasure those memories.”
Recovering from these concerts has been an experience. Over a week later and my back is still bothering me. But it’s an improvement: the day after the London show, I could barely walk and it took days for the limping to fade. But I’m doing better. Surprisingly, the post concert low hasn’t been too bad. Mainly, I just miss being at the show, in the show. I physically miss it. My body misses it. But I’m doing okay. These concerts have given me a lift I desperately needed and will keep me going while I take my next steps, whatever they end up being. For that, I’m incredibly grateful.
A Letter Under The Floorboards
Posted on April 16, 2019
Today is exactly a year since we moved house. That was a terrible day. It was stressful and upsetting and exhausting. I had a meltdown when we finally collapsed in the new house (surrounded by boxes and carefully balanced furniture) and neither me nor my Mum slept that night. It was all just too much.
It’s better now. I’m still adjusting, but then I had spent most of my life in that house so I didn’t expect a quick recovery. I’m getting there. My room almost feels like my room.
Since we moved out, we’ve actually learned quite a bit about the history of the house and the people who lived there. Our favourites are two women who lived and worked together their whole lives, the first head and deputy head of Varndean School. We even found pictures of them, which is really cool. We were all weirdly moved to learn these stories.
When we moved out, I wasn’t thinking about the history of the house and our part in it. I was just trying to figure out a way to say goodbye. So I wrote a letter and tucked it under the loose floorboard in my room. It was a letter to any and all future occupants, asking them to look after the house for us, for me. We’re part of the house’s history now and perhaps, one day, someone will find this letter and feel the same way about us as we feel about these two women. And since we live in a technological age and the first step of investigation is to google something, I thought I’d put this out into the internet. Maybe one day they’ll find me.
To whoever finds this,
This has been my bedroom, on and off, for about seventeen years. That’s most of my life. That’s a surreal thought, one that I’m trying not to obsess over. It took a long time to feel okay about moving and I’m scared that thinking too hard about all of it will be the wind that blows me back into that storm. I didn’t think I’d survive it the first time. I don’t want to leave but I don’t want leaving to be a life altering tragedy. I’m trying to remember that I don’t need this room to be me, even if it feels like that sometimes.
A lot has happened in this room, in this house. I grew up here, watched thunderstorms, brought friends over for dinner, celebrated birthdays and Christmases. I wrote stories and songs and my brother learned lines and turned the flickers of ideas into masterpieces. I said a last goodbye to my cat of fifteen years, learned that I could love another one, and then raised two litters of kittens with her. I taught my dog to sit, sneaked him onto the sofa when no one was home, and sang to him while emptying the dishwasher. I studied for GCSEs, A Levels, and my degree. I graduated with a first and I found out in this room. I had my heart broken. I struggled with my health and my mental health. I found out that my Dad had died.
I worry that leaving this room, this house, means leaving all of those things behind and that I’ll lose myself because of that. It may not be rational but it’s how I feel. I hope that I’ve managed to box all of that up with my belongings but I guess I’ll see when I get to the new house. There’s a little voice in my head that says that the rooms feel empty because we’ve packed all the memories and emotions but I’m scared to believe it.
Maybe this is all too flowery and fluffy for you. That’s fine. A room can be just a room. A house can be just a house. But regardless of whether you see it as four walls or a time capsule, please take care of it for me. For us. We have loved it dearly and hope that you will do the same. Fill it with life (and extra radiators because, as you’ll soon find out, it’s practically impossible to keep it warm). I hope you will feel as safe here as I have.
Look after this place. I’m trusting that you will.
LAH
16/04/18
What Women With Autism Want You To Know
Posted on December 8, 2018
The other day, I was just browsing through YouTube (probably procrastinating something) when I came across this video.
“Autism is not a disease, it is a developmental disability. It’s about living our best possible lives with this condition.”
I am ridiculously excited that this video exists. Even a few years ago, when I was looking into Autism as an explanation for my struggles, I was still being told that women don’t have Autism or being dismissed because I didn’t fit into the stereotype for Autism (which has come from autistic boys and men). So the fact that this video even exists shows that some progress has been made. At this moment in time, it has just short of a million views. A million! That means that potentially a million people now have a better understanding of Autism in women. That’s completely amazing!
There’s so much good stuff in this video – you really should watch the whole thing. But here are some of main points and some quotes that stuck out to me:
1. Autism covers a wide spectrum.
- “Autism is an internal thing, not an external thing. No one looks autistic.”
- “Autism isn’t a linear spectrum of high or low. It’s a whole bunch of different traits that are on their own spectrums. It’s kind of a 3D, weird mess.”
- “Autism is simply a different way of thinking, seeing, and interacting with one’s world.”
2. We have emotions.
- “I would definitely disagree with the idea that we’re not emotional. I think we’re actually highly emotional. I think that we just… many times we don’t express it the way people expect… We’re feeling it. It’s there. But it just might not come out. And then, at other times, it might be overly expressed.”
- “We can’t filter them out because we feel them so strongly so we shut down as a way of processing all those emotions.”
3. Social interactions can be challenging.
- “It takes a lot of effort to appear [like anybody else, like someone not on the spectrum]. Like, it takes a lot of conscious awareness. Social skills are like a muscle for us.”
- “It’s very, very draining. Even with people that I care for and enjoy being around, I have to psych myself up to be around them.”
- “All the little things that everyone does unconsciously, autistic people do manually. So that adds up. What I’m doing with every part of my body, I am to some degree aware of and trying to do.”
4. Diagnoses can happen at any age.
- “A lot of women, women that I know who are autistic, are not diagnosed until their twenties, thirties, or even beyond. A large part of this is because the way that we diagnose Autism is by using criteria that were created by observing boys and Autism looks different in girls and women than it does in boys.”
- “I feel like, ‘okay, I know why I’m this way, I know why other people are the way they are, so I can bridge this gap.'”
5. The nuances of dating can be challenging… but we do have sex lives.
- “We just may need more support in order to learn how to make [relationships and sex] happen. We don’t naturally understand the nuances that are involved and there are a lot of nuances.”
- “People on the Autism spectrum, especially women, are more likely to experience sexual assault or some sort of violent incident than the neurotypical, non autistic population. We are very vulnerable. We definitely can be more trusting because we are very honest and upfront people so we don’t think that other people might not be so honest and might be trying to hurt us.”
- “One of the traits of Autism is not reading between the lines in social interactions and so much of dating and sexually is supposed to be indirect and subtle and that it’s inappropriate to talk about sex in a direct way, even when you’re teaching it as sex ed.”
- “No one is teaching the social aspects [of dating and sex]. And honestly, this is where autistic people are the canaries in the coal mine. Teaching the social aspects of sexuality would help everyone. Autistic people need it but it also benefits everyone.”
6. We have lots of different interests.
- “There is a stereotype that everyone with Autism is into science and math and stuff, like Rain Man. But a lot of people with Autism… women actually, especially… a lot of us are into the arts.”
- “In my experience, autistic girls are also just as obsessive autistic boys. They’re just obsessed with, you know, fantasy novels or their favourite band or whatever. Not planes, trains, and automobiles.”
7. Bullying sucks.
- “You know, it’s like somebody making fun of a blind person only in this case you’re blind socially.”
- “We all start from somewhere but that isn’t necessarily where we’re going to end up and you have to believe that there is going to be a future.”
- “There’s enough misfits in the world, like, people who got picked on. There’s so many of us. So you do find your tribe.”
8. It’s getting better.
- “I think things are going to be a lot better for the next generation.”
- “You know, your kid might be behind their peers but it doesn’t mean they’re gonna be behind forever. Your kid is a full human being who will grow and change just like everyone else.”
As I said, it’s amazing that this video exists and that autistic women are being seen and that people are finally understanding that autism in women looks different than it does in men, and that it can look different from woman to woman. I agree with all of these points but there’s still so much to it, to living with this everyday. So, in addition to these points, this is what I, as an autistic woman, want you to know:
- I have no idea either – Just because these behaviours and reactions are coming out of my brain and my body, that doesn’t mean I necessarily understand them. I’ve done a lot of reading about Autism and mental health but it’s just different in real life. I’m learning everyday and I hope that you’ll keep learning with me.
- It’s exhausting – As these women said, it’s draining, even when it comes to things that you enjoy. It’s like you have to consciously process everything you do, everything around you, and that takes up so much energy. I cannot manage as much as everyone else and I find that so difficult to get my head around.
- I’m doing my best – I promise.
Finding Hope 