Finding HopeA Week In My Life (July 2023)
Posted on September 30, 2023
I really overdid things in June and pushed myself harder than I could really handle; I was just so overwhelmed and drained and exhausted so, in July, I tried to take things more gently, to varying degrees of success. Having said that, I did have some completely one-off opportunities booked that I couldn’t – and didn’t want to – miss. It’s hard, relearning to balance doing things with recharging and building my stamina. There are still so many things I want to do, especially see my friends and schedule more sessions with my favourite cowriters but I just really struggle to make things fit, and make things fit without absolutely crashing and burning, something that has happened repeatedly since I started taking the Phenelzine – and therefore doing things – again.
The week in this post started on Monday 3rd July 2023 and ended on Sunday 9th July 2023.
MONDAY
I woke up before nine and worked through some of my morning habits, like drinking water and my Duolingo practice, before getting up and getting in the shower. Then I settled in the living room and got to work on my current blog post, alternating with closing some of the many tabs I have open and trying to tidy my laptop up a bit. My Mum had gone in to town to get her laptop fixed and she’d asked about mine and it’s new habit of randomly turning off at any given moment. They said that, when it was made in 2015 (I got it later, refurbished), running it was like asking it to function at 100% but now, eight years later, running it is like asking it to run at 200%, which is obviously problematic. And given my propensity to work on about seven different things at once (with so many tabs open), I’m honestly surprised that it’s survived this long. They basically said that it’s not going to last much longer and I’m going to need to get a new one soon: the dreaded words with the Taylor Swift ticket sales coming up. Even though I’ve been saving for these concerts and have savings for moments like these (when something necessary, like a laptop, needs to be bought), the money anxiety was sitting in my stomach like a slimy, writhing creature.
Early afternoon, one of my friends came over to visit. She’s probably my oldest friend; we met when we were thirteen and we’ve been really close ever since, even though we don’t see each other as much now, living in different cities and working and so on. But our friendship has been one of the great pillars of my life; we always pick up right where we left off and there’s never any awkwardness. It was so, so lovely to see her, to hang out with her even though it wasn’t as long as we’d hoped for, but we got to catch up properly and we had a good laugh. I miss her more now that she’s further away, further away than she ever has during our friendship; it’s so much harder to see each other. But it’s comforting to know that our friendship has never really changed, even if it has evolved since we were at school and saw each other every day.
When she left, I made sure to take some rest time. Mum and I were both hanging out in the living room; she was working on her laptop and I spent a couple of hours continuing the work of cleaning up my laptop. We’ve been half watching House at times like this and we finally finished it, watching the ‘making of’ at the end. For the most part, it was fun and interesting but there was one part that really got under my skin: one woman was talking about the creation of the character of Gregory House and how the original idea was that House was in a wheelchair but that that was ‘too difficult’ so they changed it. I’m sure she meant it from a filming and set perspective and they eventually got to the idea of him using a cane, which I do think was a better choice for storytelling given the character, but the way she talked about it just felt really ableist and insensitive. I know I get triggered by that ‘too difficult’ and ‘too complicated’ talk but it just felt really uncomfortable and, at the very least, borderline offensive to wheelchair users.
My Mum and I had an early dinner together and finished His Dark Materials while we ate. It was the first time Mum had seen the end and my second. God, the end just wrecks me; it’s so heartbreaking. Dafne Keen and Amir Wilson’s performances (and, of course, Ruth Wilson’s – I love her) are just incredible. I think series three is my least favourite, just because there’s so much happening that needs to be shown in order for the end to make sense but, when any of those three are onscreen (plus the scenes between Ruth Wilson and James McAvoy), it’s breathtaking.
I was freaking exhausted but I made myself go and do my hydrotherapy anyway. I tried – I really, really tried – but my back still hurt and I was so exhausted that I didn’t manage as much as I usually do. I was so tired that I felt like, if I’d rolled over and floated face down, my body would have been too tired to care and I would’ve just drowned. But going was better than not going and I had a nice time with two of my parents swimming too.
Back home afterwards, I put on Doctor Who, too tired to think any harder about what to watch, and kept working on my laptop. It was a struggle though because I kept getting distracted by the cats playing with their new donut toys, plus I kept falling asleep sitting up; I was that tired.
I dragged myself to bed, utterly exhausted, but then I was still awake at three for some reason. That was deeply frustrating; I was so tired but I just couldn’t sleep.
TUESDAY
I struggled to wake up, finally managing to drag myself out of bed around twelve; I was just so tired and the lack of decent sleep made me feel heavy and groggy. I don’t know whether it was connected or not but for the next few hours, I had some really miserable stomach problems that meant I couldn’t do much more than lie on the sofa. I felt hot and faint and nauseous and sweat was all but dripping off me. It wasn’t fun but eventually it did recede a bit and I was able to haul myself up and into the shower.
Back in the living room, I spent the next several hours working on blog posts, hanging out with the cats, and dreading therapy. I was just feeling so tired and raw that putting my feelings under a magnifying glass was the last thing I felt like doing. But I went and it wasn’t as bad as I’d imagined it would be: I’d recommended The Anthropocene Reviewed by John Green to her because I related to so many of the feelings and philosophies that Green had written about (my copy, full of highlighted passages and comments scribbled in the margins, is an incredibly revealing insight into my brain, into my emotions and experience of the world) and she’d just finished it so we decided to go through some of the things that had really resonated with me, especially in the context of my mental health. It wasn’t easy but it wasn’t as hard as it could’ve been. I do think our discussion made it clearer than ever that my depression is still hanging around, dark and heavy and cloying.
Back home, I spent the evening working on blog posts and trying to reduce the amount of open tabs on my laptop. For a while, there was some amazing heavy rain and that really helped to lift my mood; I’ve always found it so calming but also really invigorating. If I recall correctly, rain releases a wave of negative ions which apparently relieve stress and alleviate depression as well as boosting energy. I don’t know how much research is behind those findings but heavy rain and thunderstorms always have that effect on me.
I wrote in my diary for a bit and then started to go to bed early but got distracted by the piano. A little fiddle turned into a couple of hours as I started playing old and half finished songs; my early night became a distance memory when I got sucked into writing a bridge for a song I’ve always loved but never managed to finish.
When I eventually got to bed, I quickly planned out my route into London for the next day and then went to sleep around two in the morning.
WEDNESDAY
I struggled up early but kept falling asleep again, which resulted in me running around like a headless chicken as I tried to get ready to leave. I just managed to catch my train and spent the journey catching up with various family members, working on various blog posts, and listening to Maisie Peters’ album, The Good Witch. I’m obsessed with it.
It seemed to take ages to get to Richard (one of my best friends, my most trusted cowriter, and my producer) but I did eventually arrive, exhausted, out of breath, and hot. We hung out for a bit as I gathered myself, catching up and chilling. We were both tired but eventually we got going, settling into his studio to work on some music. We didn’t have a specific plan and ended up writing a new song together, based on an idea that I’d been turning over in my head. It was hard to start with, like we’d both forgotten how to write together after going so long without doing it – it did get easier but I think that, if we can get back to writing together more often, we’ll find our groove again (no pun intended). By the time we had to stop, we’d written a delicate little song based on The Nettle Dress, an art piece with an accompanying documentary.
That done and running late, we raced across town (my joints were deeply unimpressed – although admittedly I shouldn’t have tried to be a hero and just gotten the lift out of the tube station instead of trying to manage all of the stairs) to the O2 Forum Kentish Town for the Maren Morris show. We both love her and we always go to see her together whenever she tours here. My Mum met us there: I had a disabled ticket and she had the accompanying companion ticket since I find these environments so hard (concert accessibility is unbelievably terrible) and she knows best how to help me through them. The O2 Forum Kentish Town doesn’t have an accessible section (which, again, just blows my mind – how can they be a functioning concert venue that hosts acts as big as Maren Morris without accessible seating?!) but they offered me early access so that I could, in theory, get a suitable seat. That was very stressful but fortunately we did get in quickly enough to get a seat that wouldn’t leave me in excruciating pain the next day. The few in total that I could’ve used only fanned my frustration with them as a venue.
Sam Palladio was the support act and he was good but his musical style wasn’t really my taste; for the most part, I couldn’t stop thinking about him as Stoke in Episodes, which was pretty distracting. Ah well. I’m happy to simply enjoy the support slot; becoming a fan of the person filling that slot is a bonus considering they’re not the person you’re there to see.
Maren Morris was incredible, as always, and she played so many of my favourites, including ‘Circles Around This Town,’ ’80s Mercedes,’ ‘The Middle,’ ‘RSVP,’ ‘Nervous,’ ‘Once,’ ‘Second Wind,’ ‘Rich,’ ‘The Bones,’ and ‘My Church.’ Her voice was in top form and she’s such a great performer; it’s always such an amazing experience to see her live. I love how much London means to her, how she never fails to acknowledge how much she loves it. And to honour that this time, she played a brand new song called ‘Get the Hell Out of Here.’ That was really special.
It was a really, really awesome show. She’s such an amazing performer. My only regret was that she didn’t play ‘Humble Quest’ since I love it so much, but then it seems that we got a lot more songs than the rest of the tour did – plus a new song – so I really can’t complain. It is surprising to me though, since it is the title track of her most recent album. (The show had also meant I missed the Song Suffragettes show – and, as it turned out, the last one – which I was sad about because I love or am desperate to see most of the girls playing and see my friends who work the event but it couldn’t be helped. It’s Maren Morris!)
Richard and I hugged goodbye, repeatedly and effusively, before going our separate ways. A short bus ride later and I was on the train home. I was exhausted but I used the time to make sure my Ticketmaster and AXS accounts were linked up and organised, all the information stored clearly and carefully to hopefully make any ticket buying as straightforward as possible. It was a cold train on a cold night and even though I’d sat for most of the show, my joints were so sore (probably from the slightly panicked journey to the venue); I was hobbling by the time I got off the train.
I was very pleased to get home and into my bed but I needed some time to decompress before I could sleep. I was scrolling through BBC iPlayer, looking for something that would soothe the still surging adrenaline. I spotted Wallace & Gromit, consistent figures in my childhood, and ended up falling asleep as those stories played out.
THURSDAY
My alarm went off at the usual time but I ended up going to back to sleep. It was a very slow start to the day but I was just so tired and sore from the night before. I also had a throbbing headache so I figured I was dehydrated, having probably not drunk enough at the concert. I’ve been trying to drink more water (my hEDS comes with Dysautonomia so I’m quickly and easily dehydrated) but the habit hasn’t become ingrained yet and I’d been distracted by the trip to London.
I lay in bed for a while, looking through my photos from the night before. There weren’t many good ones. I would love to get a new camera – mine is probably ten years old now, if not more, and I’m finding myself increasingly unhappy with the quality of the photos – but between the cost of Taylor Swift tickets (fingers crossed that I can get them) and the looming expense of a new laptop (mine is dying a slow, painful death), I can’t afford it, at least not for a while. Hopefully I’ll be able to get one before hopefully seeing Taylor Swift next year.
It turned out to be a hard day. I did manage to get my budget clearly worked out for seeing Taylor (I’d had a rough idea, having been saving since The reputation Tour ended, but it needed to be hammered out, which I’ve now done) but I spent most of the day in tears, stressed and overwhelmed and exhausted; it’s never been clearer that I need a day off, that I’ve been doing too much and need to slow down a bit. The boost Phenelzine gave me seems to have worn off, at least to some degree, and now I’m left with more plans than I have the energy or emotional capacity for. Between the busy weekend ahead, my stress around money, and the fear that I won’t get to see The Eras Tour next year: I’d received a presale code but there was no information about disabled access and when we rang them to ask how to handle the ticket sale, the information was different from last time. It’s different every time. The whole thing is just getting more and more distressing; it’s just another aspect of the world telling me that, because I’m disabled, I don’t matter as much as the rest of the population.
So it wasn’t the best day and I struggled to get much done. I did some writing and posted on my cat Instagram – a throwback to when my lovely Lucy was a kitten – but that was about it, having lost so my of the day to panic and distress…
I had a quiet evening, watching New Tricks with Mum and working on a couple of different blog posts before going to bed.
FRIDAY
I could not sleep, no matter what I tried; I think three hours is probably a generous estimate if I totalled up the sleep I did manage to get. It was frustrating and boring but the timing could’ve been worse as it meant I was awake to listen to Speak Now (Taylor’s Version) when it came out. Given that her album releases are always at five am for me, I don’t get to join in the countdown with everyone online. So that was a bonus of sorts.
I always loved Speak Now – it was the album that had me absolutely invested in Taylor’s music – and I think this is the best rerecording of the three so far, in terms of how closely she’s managed to replicate the sound. The vault comes close to being my favourite, just after the vault on Red (Taylor’s Version): I love ‘Electric Touch (Taylor’s Version) (From The Vault),’ ‘I Can See You (Taylor’s Version) (From The Vault),’ ‘Timeless (Taylor’s Version) (From The Vault),’ and ‘Castles Crumbling (Taylor’s Version) (From The Vault)’ is fast becoming one of my favourite songs on the whole album. And the prologue is beautiful but heartbreaking; I’m tempted to call it one of the best non-musical things she’s written. Speak Now has always been about using her music to express her feelings and tell her side of so many different stories but this new prologue exposes a new side of that: that she was ashamed of not speaking up in the moment (something that she now tries hard to do) and that writing these songs was her way of coping with it, like she needed to prove to herself – and everyone else – that she could speak up. That undertone of shame is also present when you look at the songs she didn’t include at the time, in the context of the prologue: there are powerful emotions and experiences – the insecurity in ‘When Emma Falls in Love (Taylor’s Version) (From The Vault),’ exploring her sexuality in ‘I Can See You (Taylor’s Version) (From The Vault),’ and the pressures and fears that you can hear in ‘Castles Crumbling (Taylor’s Version) (From The Vault),’ for example – that it seems she didn’t feel able to share and thus an album about being honest wasn’t as honest as she’d intended. I have so many thoughts about this album already but I think I’ll save them for my albums post.
I got up around seven, bored of trying to sleep; I figured I’d have a nap later in the day if I needed one. My plans for the day had changed anyway: I’d originally been going to see Madeline Edwards at OMEARA that night, having seen her in Nashville and fallen in love with her album, Crashlanded, but she’d cancelled the show (with promises to come back soon). I was disappointed – I’d been really looking forward to seeing her perform again and seeing her perform a show after seeing her in a songwriters’ round capacity – but personally, it was probably a good thing that I didn’t have to travel up to London with the weekend I had ahead of me. I was already completely exhausted and it meant I could still go to therapy – not as much fun but still a worthy use of time.
I tried to have a restful day but I was so anxious about going to London Film and Comic Con the next day. It was my third attempt; my first was thwarted by COVID and the second by my anxiety. It’s not a happy environment for me and I was stressed about being surrounded by so many people and so much noise. I was also worried about messing up out of anxiety when meeting Amanda Tapping, my reason for going. So the whole thing had me basically paralysed by anxiety. I tried to do nice things, like watch my favourite TV shows and make bracelets (my current hyperfixation), but it was still a lot.
I went to therapy and we split the time between going over the coming days and my coping strategies before continuing with our discussions inspired by The Anthropocene Reviewed by John Green. I do like having something to prompt our conversations, especially when it’s a busy, stressful week; I feel like it allows us to keep moving forward, for her to keep learning about me, without flooring me the way sessions often do. When I’ve got something big the next day (or during the week), I can’t really afford to give everything to therapy. It’s a good way of still making the most of the time, at least for me.
Back home, I put on New Tricks (an oldie but such a goodie – apart from some of Brian’s mental health stuff) and continued resting, methodically making more bracelets. I wasn’t sure if I’d have the opportunity (or the confidence) to give the handful I’d made for Amanda to her but I wanted to be prepared. I also wrote out my letter for her (I wanted to make sure I could share the thoughts I wanted to share with her, even if I froze up in the moment) and chose the photo I wanted her to sign at the autograph booth (one from the final episode of Sanctuary – Sanctuary, my beloved).
One of my parents (one that doesn’t live with me and Mum) joined us for dinner and we caught up and continued our watching of Lucifer while we ate. I finished the bracelets I’d been making and went to bed early, very aware of how early I had to be up in the morning to get to London.
SATURDAY
I had a stressful early start but despite everything, Mum and I still made the train on time. Mum had a carer’s pass for LFCC; there was no way I could do it without her. Maybe one day but certainly not at this point, having already attempted to go and backed out because my anxiety over it was so paralysing. Even with her there, I was worried about getting overwhelmed and having a meltdown. But at least with her there, someone knows what to do; I wouldn’t have to manage something like that on my own.
On the train, I managed to get my new blog post up and then there was nothing left to do but wait and deep breathe until we got to London and then over to Olympia. Getting in as a disabled person was complicated and stressful – I absolutely would’ve had a meltdown if I’d been there by myself, without her to take over and cut through the chaos – but the people were really nice (one of them at least was autistic too) and skipped through all the complications to make it easier and get me through the registration and back out into the open hall and away from the dense crowd, which I really appreciated. We’d arrived in good time so at least I didn’t have to worry about that. We’d planned to be there just for the Amanda Tapping parts – the meeting and photograph, the autograph, and her talk later in the afternoon – so that I didn’t overwhelm myself when I was already anxious about my first trip to the convention but that meant we had a pretty big gap in the middle of the day; I hadn’t booked anything because I hadn’t been sure how the autographs worked. But according to the schedule Clark Gregg and Iain De Caestecker – both from Agents of Shield – had a talk right in that block of empty so I booked us into that.
I’d been well prepared and had the map on my phone so I navigated us up to the second level where the photo booths and autograph tables are. I spotted Amanda quickly and just stood for a while, watching people take their turn and trying to get an understanding of how the whole thing worked. But since it was just about time for her photo session, I didn’t join the queue; I’d just have to leave it again in a few minutes. So I found a quieter area to sit and wait, deep breathing to try and keep myself calm for the impending meeting. I was so anxious and so anxious about doing something stupid or embarrassing that would make me cringe for the rest of my life; I tried not to obsess over that possibility and just breathe but it was hard. My Extra Help wristband meant that I was allowed to go straight through for the photo – so I didn’t have to stand and didn’t have to spend too long completely surrounded by people – but there were still several people before me, which was a relief; that meant I could watch both how the process worked and how they interacted with Amanda (and how Amanda interacted with them, not that that had changed from when I met her back in 2018 at AT9 – she’s so open and warm) to prepare myself. When it was my turn, we hugged and I said how good it was to see her in real life and not on a screen. She was really lovely; I hate that the memory is already fading. We posed for the photo and then we said goodbye, that I’d see her at the autograph table. I don’t know how she does that kind of event; I’d be completely overwhelmed. My photo was printed right there and I collected it on the way out. I wish I was happier with it: my fringe rarely looks good in photos and I feel like I never look like myself in posed photos. But, as it turned out, it was the autograph moment that was really special.
The adrenaline was still pumping, my hands shaking, when I met up with Mum outside the photo booth and it took almost an hour for me to calm down. The adrenaline crash was making me feel sick and I was obsessing a bit over whether I should’ve done the autograph before the photo, whether I’d been too enthusiastic, and so on and so forth. The photo session had ended and, after taking a photo with Matt Smith, Amanda was back at the autograph table. I was really stressing about messing up but I knew that putting if off was just giving me more time to worry. At that moment, the queue was pretty short so I joined the end and pulled out the photo I’d printed for her to sign.
The photo sparked surprise from her helper person – I think everyone had one to take care of the admin of checking everyone off and getting names right – about her with long, dark hair, which Amanda laughed about and I expressed my love of Sanctuary and how important the show was to me, how it always will be. I gave her the letter I’d written, briefly explaining that I’m autistic and had worried that I’d get too overwhelmed to talk, which she took in stride (I was feeling pretty overwhelmed, talking to her face to face – although having no one behind me, waiting for me to move on, did help). I also gave her the bracelets I’d made and she was so gracious and so lovely about them, instantly noticing that both Mum and I were wearing others that I’d made. The conversation actually felt surprisingly easy and, like any fan I think, I couldn’t help wishing I had hours to talk to her and ask her questions. My Mum also grabbed a moment with her, thanking her for everything she’s done for me – for how much her presence in my life has helped me – from one mother to another. We all ended up quite emotional and Amanda stood up and gave us both a hug, saying that we’d made her weekend. I’m sure that we’re one of multiple moments that made her weekend but that meant a lot to me; I treasure that comment.
I was beyond hyped and very emotional after that and needed a quiet moment to myself in the bathrooms in order to bring everything back down to manageable levels, levels where I wouldn’t get tipped into a meltdown by the business and background noise of the convention. And by the time I’d managed that, it was time for the Clark Gregg and Iain De Caestecker talk.
Clark Gregg is so lovely, warm and open and affable, and although he was quieter, Iain De Caestecker seemed really nice too. They were clearly really good buddies and they told lots of funny stories; they were very enjoyable to listen to. It was really cool to hear how they got into acting and how some of their early roles shaped them and their approaches to their careers and their new projects sound interesting, although I’m not entirely sure Iain’s is my thing. They talked a little bit about Agents of SHIELD but I couldn’t help wishing that they’d talked about it a bit more, about their experiences on the show and with their castmates. I’m pretty sure everyone there was an Agents of SHIELD fan and would’ve welcomed any behind the scenes stories. On that note, I’m still sad about missing Ming Na Wen when my anxiety forced me to cancel and I would LOVE to see Chloe Bennet at a convention, although I’m not sure she does them anymore; she hasn’t done one in years, pandemic irrelevant. I can only imagine what an absolute mess I’d be if I had the opportunity to meet her, given how important the character of Daisy Johnson is to me; her acting is, of course, a big part of that.
When the talk ended, Mum and I found a table tucked away and had some lunch. We ended up chatting with a man who had a service dog, a gorgeous yellow lab or golden retriever, I wasn’t quite sure. But he was lovely and that got us talking. Now that I’ve been accepted to Autism Dogs‘ service dog programme (yes, I am SO excited about getting a service dog but I want to talk about that properly in its own post because the whole thing is a really big deal), I’m always keen to talk to people about their experiences and about their service dogs. This guy – he was also autistic but had his service dog due to being in the armed forces – patiently talked with me about his previous and current service dogs and even showed me photos of his dogs meeting various famous people; that made me laugh. While obviously not a good reason for trying to get an Autism service dog, I think that must be a super cool way of raising awareness about Autism and the needs of autistic individuals: posting pictures of your service dog with someone famous.
When the time rolled around, me and Mum headed down to the little auditorium area. I ended up making friends with someone in the queue and we spent the wait, discussing how much we love Amanda Tapping, about Stargate SG-1 and Sanctuary. She was having a hard time and, as the only person there, I did my best to keep her occupied until the talk began and then we were all absolutely occupied by Amanda. She walked out onto the stage and I noticed straight away that she was wearing three of the bracelets I’d made her – I thought I might explode with joy. (I couldn’t see, at the time, which ones she’d chosen and my photos turned out not to be clear enough. I ended up scouring social media for photos that would reveal them and, although it took several days, I did eventually get to see which ones they were, which made me very happy.)
I’ve always found Amanda to be a beautiful, thoughtful speaker. Even when answering questions from the audience, questions she couldn’t have prepared for, she speaks well, earnest and personable and funny, always engaged with both the person who asked the question and the audience as a whole. I think it’s because everything she does comes from a place of empathy. All of that said, the talk was really interesting and enjoyable. She told stories, from the set of Stargate SG-1 and Supernatural, and joked around with the host; she talked about her upcoming projects (although the future is very unknown with the writer’s strike going on) and how she’d been thinking about the future and what she wants to do next, how she’s told her agents that she wants to act again. That was very exciting to everyone. She also shared quite a lot about her life, like stories from quarantine times and how she prepares for these events and recovers after, and it was so lovely and such an honour to get a little glimpse into her world. The one thing that I felt was missing was any talk of Sanctuary, especially as her most recent starring role and a project that was such a world unto itself, driven by this small, emotionally invested circle. It would’ve made the experience perfect to hear a couple of stories from that time. I kept waiting for her to mention it or someone to ask a question about it but nobody did. I’d finally gathered the courage to put my hand up and ask a question about it (I can’t remember what it was now – probably something about how it differed to other shows she’s been a part of or about the character of Helen Magnus, another of my absolute favourite characters of all time) but it was too late; we’d run out of time and they weren’t taking anymore questions. But it was fine. The day had been amazing and the fact that I’d even considered asking a question was a really big deal. Maybe next time I go to a similar event, I’ll actually manage to ask one.
So, yes. As I said, it was an amazing day and an amazing experience, despite all of my anxiety around. It took me a while to process it all but when I finally felt like I could put at least some of it into words, I posted this…
When Amanda’s talk finished, Mum and I got going, heading back to the station and catching the train towards Manchester. Having been accepted by the Autism Dogs charity, we wanted to go to their fundraiser the next day to show our support and our gratitude. It was a bit of a trek though, especially after such a long, emotional day. I’d planned to work on the train but I was so tired that I ended up putting my head down on the table and sleeping for more than two hours. Oops.
It was pouring with rain when we arrived – absolutely tipping it down – and since our hotel didn’t do dinner, we picked up fish and chips and the hotel was really lovely and accommodating in letting us eat in our room. I was still falling asleep, literally wherever I stopped (like leaning on the bannister while the hotel staff member retrieved plates and cutlery for us); I barely made it through my dinner. We ended the day watching one of the Sanctuary episodes I had on my laptop (and were properly weirded out, watching Amanda with long, dark hair after just talking to her in person with short, blonde hair). We were both asleep early, probably by ten and definitely by eleven.
SUNDAY
Exhausted from the day before, it was a struggle to wake up early but I did eventually manage to force myself out of bed. The shower was super slippery and I nearly fell over several times, which was a bit scary, but I did survive – just – and then ran around like a headless chicken as I got myself ready and packed up. The cab was already waiting when I was done but then I got lost twice on my way out of the hotel. So… not the most graceful beginning to a day.
My Mum and I spent the morning at the Autism Dogs fundraiser, which was really enjoyable. We ate cake, met some gorgeous dogs, and watched the dogs compete in some very adorable competitions, including waggiest tale and several rounds of musical sits. It was all very cute.
The event being so far away meant that we didn’t know anyone there (apart from a few people from Autism Dogs) but we met a really nice family and ended up spending most of our time chatting to them (and their gorgeous dog). It was a really nice morning.
Then it was back to the station, a really long wait for the train, and a long series of trains home. The only thing of note was a really adorable corgi on one of them. I could definitely see myself having a corgi. But beyond that, it was long and cold and monotonous. I was completely exhausted – physically, mentally, and emotionally – so I didn’t manage to do anything on the journey; I ended up alternating between scrolling through social media and sitting back with my eyes closed.
Getting home was a great relief. It had been a really good weekend but, as exhausted as I was and needing to process everything that had happened, I really needed some time in my safe space without loads of people around. I was delighted to see the cats too; I hate being away from them. I went to bed ridiculously early and was asleep in minutes.
This post is – clearly – quite late. To be honest, I wasn’t sure if anyone cared, a fear that I often have about this blog, especially in my lower moments. But this blog really matters to me so I’m trying to ignore those whispers. This was a really cool week where some really special things happened and so I came back to it and pushed myself to get it done. I hope you enjoyed it, or at least found it interesting. It’s kind of funny; I think these are the posts where you can potentially learn the most about me but because they’re so busy, with so much happening in each one, that fact sometimes goes unnoticed. I don’t know. Maybe that’s just my runaway brain overthinking.
I hope you’re all doing well.
Everyday Essentials
Posted on July 1, 2023
Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?
GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.
MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!
PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.
LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.
MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.
MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.
FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.
NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.
FACE MASK AND HAND SANITISER – I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.
A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.
JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.
POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).
LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective. This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.
CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.
So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!
A Week In My Life (May 2023)
Posted on June 26, 2023
It’s been a long time since I did a Week In My Life post but I thought they’d be fun to revisit. I don’t really have typical weeks anymore – every single one looks different with all of the different things I’m doing and experiencing – but I thought that might add to what makes them interesting; the format remains the same but the contents will always be completely different. This was a super busy week because, on the Monday morning after it ended, I was flying out to Germany so I had to get a lot of stuff done; there could be no putting it off and my ADHD brain did not like that. So it was stressful and busy and chaotic but there were also some really cool, fun, joyful moments too. So it was an interesting one to record.
The week in this post started on Monday 22nd May and ended on Sunday 28th May.
MONDAY
I was up at eight thirty and pretty much straight out to the hairdressers to have my hair coloured in preparation for going to Germany (I’d had it cut the week before). I find it takes several days to settle, for the sharp lines to soften and the colours to blend together nicely. I get so used to seeing it faded (because it’s expensive to get redone – I often top it up out of a box but needed it to look particularly nice on this occasion so didn’t) that seeing it fresh and bold is shocking, in the best way. I love it; it looks amazing every time and I can’t believe that I ever considered doing something different with it (apart from wanting blue hair because who doesn’t). It makes me feel so much more confident; it makes me feel like me.
Back home, I got stuck into some admin work. It took a lot of effort because my brain really didn’t want to do it but I got the necessary emails sent, submitted my Amanda Tapping story for her livestream (which I wrote about in my last post in case you missed it), did some diary catch up, and worked on several upcoming blog posts. I feel like there is never any time to breathe anymore, like I’m always only just keeping up so there isn’t even a moment to stop and think before moving onto the next thing. It’s really stressing me out.
When I had a brief look at social media, Twitter specifically, because of it being Mental Health Awareness Week, all I saw were the usual vague platitudes, corporate statements that didn’t mean anything, and pictures of the royals going to various events. The whole thing infuriated me and I started ranting, tweet after tweet until the thread was barely coherent and I nearly posted it but then I stopped and thought about what I was doing. The thoughts were rushed and frustrated, it’s so easy be taken out of context when you have so few characters, and Twitter can be a pretty toxic place. So I saved the tweets and resolved to elaborate on the thoughts in a better medium, like this blog (which I did and it turned into this post.)
I spent the evening packing since I was going to London the next day and then went to bed relatively early for me, around midnight. But unfortunately, I couldn’t sleep, despite doing everything that usually helps (a routine I have long since refined); I couldn’t seem to relax, my whole body shaking. I was still awake at four, practically vibrating with tension even as I tried to relax enough to sleep. I’ve had sleep paralysis before and it wasn’t that so I don’t know what was going on; I just kept finding my jaw clenched, my hands in fists, and even my toes curled. It was hideous and exhausting.
TUESDAY
I struggled up at nine thirty, got myself showered and dressed, and settled on the sofa with my laptop. I had some more admin work to do, more emails to send, and so I worked through that list before taking a break and scrolling through social media for a little bit. Then I spent several hours working on blog posts and an academic paper about Taylor Swift’s songwriting that I had to submit before I left for Germany; the paper itself was already written but I had a list of edits to work on plus two re-recordings and a new album to integrate into the existing relevant parts of the paper. I don’t mean to be so cryptic but I don’t want to talk too much about the specifics of it until there’s more certainty surrounding the project; it still feels very up in the air, to me at least. But maybe that’s just because it’s the first time I’ve done anything like this.
Mid-afternoon, I had therapy. I don’t want to get too deeply into what we talked about; that is very personal after all. But we did talk about all of the things I had to do before leaving for Germany, as well as how I was going to handle the trip to Germany itself. Sometimes my therapist brings a friend’s dog with her, which is always a bonus. I love her and she loves me and we have some great cuddles, which are very good for balancing out some of the hard stuff we talk about. But no such luck that day (it’s fine though – it’s not like I go for the dog). We finished on time and I managed to get to the station in time to catch my train. It isn’t a long journey but I filled the time, working on blog stuff. I had to make every minute count with so much to do before the week ended and I headed off to Germany.
I got off the train at Victoria station to a very strange sight. I’d paused several feet beyond the barrier to rearrange some of the stuff in my hands and pockets and saw a man standing with a wheelchair and a dog. As I stood there, he encouraged the dog into the wheelchair and it jumped up, turning around and sitting down like it knew exactly what to do. And then, out of his pocket, this man pulled a lizard – a bearded dragon, maybe – and placed it on the dog’s back. Again, it was like both of these animals had done this a hundred times and knew exactly what they were supposed to do. And off they all went, the man pushing the two of them in the wheelchair. It was so surreal to witness. I got the rest of my stuff rearranged and headed for the tube station, fascinated that nobody else seemed to have found this a strange moment to be present for. But then it is London, I guess; everyone is very ‘stay in your lane.’ The whole situation was just so bizarre and I was very aware that I was probably watching something that I’d never see again.
Usually I stay with one of my parents when I do an overnight in London but she already had someone staying so there wasn’t room for me. I ended up staying with family friends – as did my Mum actually since she was was working in a school in London, starting early the next morning – which was really nice because I hadn’t seen them for ages. So it was really nice to catch up. We were all tired and had early starts so we didn’t last long (and had to create a schedule to get everyone in and out of the bathroom in order for everyone to leave on time, which I don’t think I’ve had to do since I was a teenager in secondary school). It took me a while to decompress and go to sleep but it was still quite early by my standards, thank goodness.
WEDNESDAY
I had to get up at half six to get ready, which is most definitely the earliest I’ve had to get up in years. I had a shower, got ready, had some breakfast, and headed for the underground. An organisation I’m a part of, The F List, which supports female and gender minority researchers in music research, particularly research that supports gender equality in music and music research was holding an event, The F List Gender in Music 2nd Annual Research Hub Conference, at my university and I was keen to learn as much as possible – my brain finds learning new things positively addictive, something that I don’t think is uncommon for people with ADHD – even if I was a bit nervous about how long I could stay focussed for. But fortunately that wasn’t too bad and they’d made accommodations for anyone who needed them, although they were very neurodivergent sounding accommodations (as it turned out, there were so many neurodivergent people there that I was starting to wonder if we were all members of the club). As they said on their website: “The F-List Research Hub aims to expand and better introduce the existing feminist and interdisciplinary collective of researchers, dedicated to evidence-led activism which aims to create an environment in which women and gender expansive people in the music industries will be able to more successfully start and sustain their music careers for longer.” And the theme was ‘identity’: “Identity is a central theme in feminist research, which sees ‘who we are’ intimately entangled with ‘what we research.’ The definition above is deliberately broad and (we hope) inclusive to all who seek to research gender issues in music.“
They ended up asking me to write the blog post for the event, which was really exciting. I would be taking notes all day anyway so I just added some extra notes about how the event worked, how everyone socialised, how things felt, in order to sum up the day accurately. We came up with a plan for what the blog would focus on and how long it would be and I played around with it in my head as I listened to the speeches and presentations.
Professor Sophie Daniels, one of the directors of The F List, the head of the songwriting program at ICMP, and my tutor for years, gave the keynote speech, which was really cool. This is what I wrote for the F-List blog because I’m not sure I could say it better: “After a bit of mingling, the day began with the Keynote speech from Professor Sophie Daniels, where she discussed, amongst other things, her career in the music industry, her founding of the songwriting program at ICMP, her artist project, Liberty’s Mother, and it’s associated advocacy work, as well as her research into why we write songs. I first met Sophie in 2014 and she was my teacher on and off for seven years while I studied at ICMP; so while I knew much of what she was sharing, it was really insightful to hear it presented this way, through the lens of feminism, particularly in the music industry and music education. Sophie has always inspired and supported me – as a songwriter, an artist, a researcher, a mental health and Autism advocate, and, ultimately, as a person – and so it was very special to watch her give the Keynote speech.” And it was: it was really special. I will never get tired of hearing ‘I Can Love You From Here.’ It makes my heart ache now just as it did when I first heard it eight years ago.
It was a lot of information but the presentations were short, about fifteen minutes each, which was the perfect length for my ADHD brain and each one was really interesting; I don’t know if it’s the neurodivergent brain but learning new things is always fun for me. The topics ranged from Trans and Non-binary inclusion in the music industry to support for those with ADHD in the music industry to exploring black feminism in the music industry to investigating the interwar generation of women composers at the Royal College of Music, as well as a conversation with the CEO of the Independent Society of Musicians. At one point, she talked about how badly the arts are treated and how they’re so important because they give life meaning: “They lie at the heart of what it means to be a human being.”
Oh, and I greatly enjoyed being introduced to this song…
I found all of it interesting – I really did – (although I did need some time in the quiet space because it was a lot of information and a lot of noise) but I think I was most engaged by the presentations on support for neurodivergent individuals in the music industry, by the one on the emerging trends in the careers of women in the music industry, and the one investigating the interwar generation of women composers at the Royal College of Music. I did wonder whether my Granny would actually be part of that group but when I worked it out, I realised that she wouldn’t have enrolled until after the end of the period of study. It would’ve been so bizarre if her name had appeared in that research.
When the presentations finished, we congregated in the attached cafe to socialise and network, which turned into a commemoration Tina Turner dance party, which was a fun if bizarre way to end the day. It was hard to leave: it was such a nice group of people plus I was dreading the long journey home. But it was a good day; I learned a lot, I fell into some really cool opportunities, and spent time with friends, old and new.
I did eventually make my way to the station and catch a train home. My Mum very kindly picked me up – I was beyond exhausted from so much standing and socialising and focussing all day – and when I got home, I went straight to bed. I had a look at social media for a while, decompressing from the outside world, before going to sleep around one, which isn’t bad for me at the moment.
One of the opportunities that came out of the day was the chance to do the write up – a blog post – of the day. You can find that here.
THURSDAY
I spent most of Thursday at my laptop, working on my Taylor Swift paper. I was really on a roll; I felt like the Kermit the Frog at a typewriter meme. I had already been writing and making progress with it but I hadn’t really managed to get on a roll until that morning and having finally hit my stride, I was having a blast. I was expanding on ideas already present in the paper and building in new ones; the only problem was that I was just increasing the word count and the task of cutting it down was looming. But I was enjoying the fun parts while they lasted and I vaguely resented being interrupted when I had to go out.
It’s been a really long time since I had my last appointment with my psychiatrist, although we’ve stayed in touch. He was in a new office – with a gorgeous view of both the Downs and the sea – and it was much nicer than the last one, which had felt incredibly medical and sterile. I like this one a lot more. And, in the waiting room, there was a painting that I instantly fell in love with: a seascape by a local artist called Sara Hill. I would love to own something like this, to get to look at it everyday. It was completely gorgeous and I found it very soothing to look at, which I suppose is fitting for a psychiatric office.
The appointment went well. My psychiatrist and I talked through my experience with the Phenelzine and what has improved and what’s still a struggle. I’d wanted to discuss increasing the dosage, which we did. It had been too much last time – I felt very overstimulated all of the time – but I thought that, given that I’ve been trying to climb out of a deeper, darker place, a higher dose might be what I needed to make it that extra distance. We talked through that idea – and how much I want to write more again, which I just haven’t been able to – and he agreed. And, proving how well he knows me after all of this time, he suggested we judge the effectiveness by how much I’m writing. Sounds good to me.
Back home, I tried to re-harness my previous focus on my paper and while it wasn’t quite as effective, I did manage to get another good chunk of work done. I even had some time to do a bit of blog writing since I doubted I’d have much time to write while in Germany, I needed to have something prepared for the Saturday at the end of the trip. By the time I went to bed, I was completely exhausted and my brain felt vaguely like I’d put it in the microwave for too long.
FRIDAY
Despite going to bed so late, I was able to drag myself up early for a very important Zoom call. I don’t want to talk about who it was with and what it was about yet, not until things are more certain. But it was a very exciting call and, all being well, some awesome life things will come out of it. That’s all I’ll say for now.
I didn’t have long until my next Zoom call so I spent about ninety minutes or so working on blog stuff. I just needed some decompression time and I find blog post writing very soothing for some reason; I think it just allows my brain to turn over an idea, over and over and over until it makes sense, and getting the words into a satisfying rhythm.
I had a really nice Zoom call with one of my best friends and we ended up talking for about two hours. We can talk about anything, from movies to the really big stuff in our lives, and we can talk for days without needing a break; we can just go off on these tangents that go on for hours and then we eventually backtrack to our original conversation topic, only to go off on another tangent. We have a lot in common and we have so much fun together. At one point, we tried to figure out how we became friends – having met on the MA – but we couldn’t: it seems that we both thought we were already friends and just skipped the whole ‘becoming friends’ part of the friendship, which is actually pretty on brand for us now that we are really good friends. I have no idea if that makes any sense but that’s how it is.
We hung up so that I could get ready and go to therapy. Again, I don’t really want to talk in detail about what we discussed but, in general, we talked about going to Germany, the things I was anxious about, and how I might manage them. I wasn’t feeling too stressed (which turned out to be ridiculous because I found the whole trip incredibly stressful) so it wasn’t too bad.
When I came out of therapy and checked my phone, I saw that Taylor Swift had made an announcement, the release of Midnights (The Late Night Edition) and the new song, ‘You’re Losing Me.’ Someone had already shared it online. Had the song been released somewhere where I could listen to it legally where Taylor would get paid for my purchase or stream, I absolutely would’ve done so – I’ve always felt very passionate about that – but since it’s only available on a CD one can buy at tour dates, I don’t feel bad listening to it online. And what a song it is; it immediately joined my 2023 in Songs post because I love it so much, especially the lyrics. I’ve talked about it more there (I’ll add the link when that post goes up in December) but the ongoing medical imagery is heartbreaking, the way the bridge just keeps building is one of my favourite Taylor techniques, and the imagery in the lyrics all had me absolutely hooked (I particularly love “Remember lookin’ at this room, we loved it ’cause of the light / Now, I just sit in the dark and wonder if it’s time,” “And I wouldn’t marry me either / A pathological people pleaser / Who only wanted you to see her,” and “Do something, babe, say something / Lose something, babe, risk something / Choose something, babe, I got nothing / To believe / Unless you’re choosin’ me / You’re losin’ me”). It’s a gorgeous, gorgeous song and weeks later, I’m still listening to it over and over. So that was a moment to have missed because of therapy.
Back home, I went back to working on my paper. One of my parents stopped in for dinner and we had a good catch up before I got back to work. Then I had some decompression time, writing more of my Mental Health Awareness Week blog post before going to bed.
SATURDAY
I spent the morning working on my paper before catching a train to London. I used the trip to keep writing and then navigated the tube system to get to the Thin Air exhibition at The Beams near London City Airport. And it was absolutely stunning…
The exhibition was made up of several different rooms, designed by different artists or artistic collaborations. I didn’t like all of them but of the ones I liked, I absolutely loved:
- The first was a hallway filled with moving lights and low frequencies. The lights were mesmeric and the low frequencies felt heavy in my chest, which was a weird feeling: on the one hand, it felt a little like my chest was about to implode but on the other, it was like I could feel every vibration in the room passing through my lungs. The description at the beginning of the piece read,”In Cleanse/Mantra, laser light travels down a corridor at 11o Hz per second, which is a wavelength of just under 3 metres. As visitors pass through the installation, their viewing distance is sliced into even sections. This creates a visual mantra: a repeated series of waves, which increase in amplitude. 110 Hz is known as the ‘human pitch,’ stimulating the right side of the brain, where art spirituality, and emotion are centred.” It was made by James Clar, an artist who works with light and technology with an interest in how new media technologies shape human behaviour. Many of his works play with perception using sculptural elements that appear to warp between dimensions, using a wide range of materials and systems, such as multi-channel video installations, lasers, LEDs, and 3D printed elements. He combines these elements to create complex narratives that reference mythology and global history, while questioning our engagement with digital culture.
- The second one was a big, warehouse like room where red and white light seemed to flash sporadically, plunging you into darkness as sporadically. It played strangely with your vision and the same low, heavy frequencies pressed in on you despite the huge space; the contrast was very weird. I found it very compelling; I felt it drawing me in even as the pressure of the low frequencies began to hurt. The space was designed by404.zero, a collaboration between the artists Kristina Karpysheva and Alexandr Letsius. The duo specialises in real-time, generative, and code-based art, which is presented in large-scale installations, performance and music. They combine noise with randomised algorithms to stimulate visceral and awe-inspiring reactions. Through their use of digital technology, they question the power structures of the Anthropocene and global politics, revealing them as invisible yet impregnable environments of the contemporary condition. On their Instagram, they describe it by saying, “In our artistic installations, we endeavour to eschew narrative descriptions, encouraging individuals to introspect rather than rely on external interpretations. We challenge visitors to delve deeper into their own perceptions and explore the depths of their personal experiences!”
- The third of the rooms was a similar warehouse-like room but with lines of lights across the ceiling, the lights speeding overhead almost like cars on a road at night or flashing on and off suddenly. It was beautiful, the colours changing; one of colour combinations stuck out in my mind because it reminded me of a lion fish. Around the room, there were big bean bags that you could sit or lie on and look up at the lights. We ended up staying there for ages, even though the low frequencies of the room were creating so much pressure in my body. While part of me liked that feeling, it did start to feel painful after a while; other than that, it was incredibly relaxing and I could’ve sat there for hours. It was called Lines, made by S E T U P, a studio founded by Znamensky Dmitry, Novikov Stepan, Zmunchila Pavel and Kochnev Anton in 2018, that works with light, programming and sculpture to create installations that sharpen physical perception, merging the lines between multimedia art, lighting & stage design, and performance programming.
- The fourth room was much smaller with a screen on the floor that we all stood around and watched as the points of multiple lasers moved across the screen as if carving out pathways in a landscape; they’d follow the same route but always slightly different, like the erosion of rivers made from light. It was hypnotic and very soothing to watch; I could’ve watched it for hours had there been somewhere to sit. It was called ‘Phosphor’ by Robert Henke and the description read: “In Phosphor, an ultraviolet laser paints temporary traces, on a layer of phosphorus. Retained for just a moment, the lines are ever evolving, combining into marks that evoke natural patterns of erosion.” Ha, I’d forgotten it said that so the imagery it was trying to evoke definitely certainly worked. Anyway. Robert Henke is a digital artist who works with algorithmically generated images, laser installations and early personal computer hardware. Also a co-creator of the cult music software Ableton Live, Henke has redefined the way we create and experience electronic music.
- And the last room that really inspired me was one full of red lasers that were aimed around the room. The shape of the space it created reminded strongly of being inside a circus tent. It was very surreal to move through it because you kept expecting to walk into a fence – which the lines of light looked very much like – and bounce back but then, of course, you moved through them. I had great fun pretending I had superpowers, pretending that I was creating the beams of light. It was created by Matthew Schreiber and the description read: “A site-specific light sculpture, Banshee 2023 responds to the volume of the room it inhabits. The precise placement of lasers produces a series of geometric patterns frozen in space. Evoking the tools of the entertainment industry and its production of spectacle, visitors are invited to move within a static light show, seeing it change as we shift our position in the room.” Matthew Schreiber is a multi-disciplinary artist best known for his large-scale laser light sculptures, such as this one and visitors are often invited to interact with his work. Interested in how physics, technology and perception can alter our experience of the world, he reimagines light and space to explore unseen forces.
It was really cool and I’m really glad we got to see it before it closed (while we were in Germany). I would’ve stayed longer if I could’ve but I still had so much to do and they do encourage you to keep moving through the rooms.
Then it was back on the train home and even though I was exhausted, I continued working on the paper and on the upcoming blog posts. I also managed to reply to some of the messages I’d been unintentionally procrastinating over, accidentally pushing them back in favour of getting more work done. So that felt like an achievement too. I was pretty much getting things done out of sheer willpower – something that absolutely does not always work but did this time for some reason – which I was very relieved by. Of course, so pleased to be on a successful streak and unwilling to break it, I ended up going to bed much too late.
SUNDAY
It was a very goal focussed day. I managed to get my blog post of the week – So That Was #MentalHealthAwarenessWeek… – done and published relatively early in the day and then I moved on to the piece about The F List conference. I had all of my notes from the actual day and I’d been making notes since then: thoughts that felt important to include, anecdotes that would make it more personal, and so on. I got that done mid afternoon, I think, and sent it off (they really liked it and it was published and shared a few days later).
Afternoon and evening, I packed for Germany. I was going to be there for a week but I am a terrible packer – I just find it really hard. I wonder if that’s an ADHD thing, given that it’s an organisation and planning based skill. Interesting; I’d never thought of that. I don’t know but possibly. I’ll have to do some research. Anyway, as I said, I’m a really bad packer (I once packed for five weeks in Australia two hours before I left for the airport – the dread and procrastination were so bad) so I struggled through that as a task. Eventually I got that done, with probably much more than I’d need.
I spent the rest of the evening trying to finish my Taylor paper. This edit was essentially finished – apart from one section, which I couldn’t work on until I got some of the literature they’d promised to send me (and now have sent me) – but it was way over the word limit and, as hard as I tried, I couldn’t get it down without cutting out significant parts of whatever point I was making or the evidence for it. But I kept trying and trying and trying, as well as tidying the whole thing up. In the end, around two in the morning, I decided that I would send it as it was and ask the organisers – all of them accomplished academics – for their advice on the word count. I’ve never done this before but they have; hopefully they can help me get it down to the required length without compromising the content on the next edit. So I stopped at two and went to bed, my laptop on the bedside table so that I could send it first thing in the morning.
It was a very anxious week: there was the pressure of trying to get everything done, the unknowns of the conference, and the anxieties around going to Germany. It was hard. But it’s also really nice to be productive again, to be working and producing, even if my mental health and neurodivergence do make that a struggle sometimes; over the last couple of years, I’ve been so paralysed by my mental health problems – by my depression and anxiety specifically – that I’ve barely been able to do anything. So just to do things at all, let alone the amount of things I’ve been doing, is kind of amazing to me.
Finding Hope 