Posted on September 8, 2020
Last week was the two year anniversary of Claire Wineland’s death. She was a twenty one year old activist, raising awareness around Cystic Fibrosis and founding Claire’s Place Foundation to support children with Cystic Fibrosis and their families. She spoke at many conferences (including TEDx and the International Respiratory Convention and Exhibition) and posted multiple videos on YouTube, talking about her illness but also her life and her thoughts on various subjects.
In 2018, she went into hospital for a double lung transplant. I remember watching the Instagram Live where she announced that she’d received the call as she dashed around her home, gathering everything she needed. It was so exciting and I was so happy for her. She had the surgery and everything seemed to be going well. But then she had a stroke and a week later, according to her advanced directive, was taken off life support. She died on the 2nd September 2018 at the age of twenty one. I wrote several posts about her, including one in remembrance.
I was deeply upset at the news of Claire’s death. When I discovered her YouTube videos in mid-2017, I instantly fell in love with her personality, her eloquence, her thoughtfulness. I really felt a lot of the ideas she expressed and despite the fact that we’d had very different life experiences, it felt like we had something in common, something in the way we thought and felt. And despite only having a few interactions on Twitter, I felt a connection to her – obviously not the same connection as the ones I have with my friends, for example, but a connection nonetheless. She had a big impact on my life and when she died, I felt like I could feel the edges of the space in which she’d previously existed, like there was a hole where she’d been. It was a very distressing feeling.
Two years later and I still feel her loss. She was so full of life. You know how some people just seem bigger than others, have minds somehow more infinite, have something extra special about them? That was always the way Claire felt to me. I’d felt so sure that I’d watch her go on to do even more great things. Her death felt so unfair and it still does. It still hurts. The documentary about her, CLAIRE, came out on the first anniversary of her death and as much as I want to watch it, I haven’t been able to. It’s just felt too hard. One day, I will but I just haven’t felt ready.
Over the last few years, I’ve had several similar experiences. The first, I believe, was Cory Monteith in 2013. I was still watching Glee at the time and he was so young; his death was so sudden. Then there was David Bowie, who has always been incredibly important to my brother, and Alan Rickman, who had been a consistent presence in my life through his role in the Harry Potter films. If you’ve read previous posts of mine, you’ll know how important Harry Potter has been throughout my life. And more recently, there have been the deaths of Cady Groves, a singer I’ve been a fan of for a decade, and Naya Rivera, another Glee alumni.
I struggled with each of these deaths, all of these people having had an impact on my life. But I think the only death that has had as dramatic an effect on me as Claire Wineland’s was that of Christina Grimmie. I’d been following Christina on YouTube for years; I just fell in love with her voice and her piano playing, how unapologetically herself she was. She was about my age and pursuing music so it’s not surprising that I related to her. But with managing both my mental health and university, I’d fallen behind on a lot of people in my social media bubble, Christina included. Then I woke up one day and she was gone; I still remember the moment I found out. I was stuck in a state of paralysed shock for days and I had nightmares that went on for months. Much like with Claire, I felt like there was a hole in the fabric of the universe where Christina had been, should still be. Even now, I still think of her often.
Grieving for a celebrity or public figure can feel like a bit of a minefield, I think. There’s the internal conflict: you didn’t know them personally but the feelings are still very powerful. Plus there are always people ready to tell you that you don’t have the right to mourn someone you never actually knew and because you didn’t know them, whatever you’re feeling can’t be grief. But personally, I don’t agree.
Grief is an incredibly complex emotion. I don’t think anyone truly understands it. Personally, I wouldn’t classify it as a single emotion; I see it more as an umbrella term, a checklist of things you may experience although you won’t necessarily experience all of them. I don’t think there’s a big enough word to describe what we go through when we’re grieving. It’s a natural disaster, an emotional natural disaster. It’s so complicated and having lived through both the losses of people in my life and public figures I cared (and still care) about, it’s my experience that the two are definitely different (having said that, we could have a whole other conversation about how the grief for each person is completely different) but that they’re both real and they’re both profound.
I definitely want to write more posts about grief but I want to keep this one to the grieving of a public figure. As I said, it is, of course, different to losing a person who is physically in your life but if you feel a connection to someone, it is inevitable that their death will be painful. As far as I’m concerned, that connection is the key. Whether they’re an actor, singer, writer, activist… they’re all reaching out, with their stories, their songs, their words. They’re reaching out with the intention of creating a connection with another person, a person who finds meaning in what they have to say. And I think it’s fair to say that – often – the deepest connections are the ones that are built from the most personal places (for example, their presence or their work has gotten you through a difficult time, you relate strongly to something they’ve said or created, etc). So of course we would feel the loss that connection. Of course it would be painful and distressing and maybe even traumatic.
And then there’s the moving forward to consider. There will always be things that remind you of them, such as events they would go to or public appearances they’d make. And in the case of creatives, yes, we will always have their past work but that may be difficult to consume again: the emotions and memories associated with them may be overwhelming; it may be painful because it reminds you that they’re no longer here; if they helped you through difficult times, it may be difficult knowing that they won’t be there to help you through any future hard times; knowing that they’ll never create or release anything new may be distressing, especially when the release of new work was a big occasion in your life.
I think that the only way to truly move through an event like this is to talk about it or, at the very least, express your emotions:
I’m sure there’s more to say. When it comes to grief, there always is. But I think I’ll leave it there. I hope you leave this post knowing that whoever or whatever you grieve for, your grief is valid and I hope that, if you’re going through any kind of grief, that you’ve found some way to manage it and/or that you have people to support you. I’m not sure if it ever goes away but it does change. Life goes on, even if it feels unbearably unfair. So carry with you the gifts they gave you and try to do some of the good that they would be doing were they still here.
Category: about me, death, emotions, event, life lessons, music, tips, video Tagged: alan rickman, blogging, cady groves, celebrity, christina grimmie, claire, claire wineland, claire's place foundation, cory monteith, cystic fibrosis, david bowie, death, documentary, emotion, emotions, feelings, future, glee, goodbye letter, grief, grieving, grieving for a public figure, grieving process, human connection, journaling, letter, letter writing, loss, mourning, mourning a public figure, moving forward, naya rivera, pain, processing emotions, public figure, rest in peace, rip, sadness, sharing, shock, social media, stages of grief, support, support system, talking, tips, video, writing, youtube, youtuber
Posted on August 29, 2020
I hadn’t intended to do another of these posts so soon but again, when I looked back at my diary at the end of the week, it felt like another very different week in my experience of lockdown. I guess I’m just trying to represent my experience of this time – and the variation within it depending on both the internal and external circumstances – as accurately as possible, for myself as much as anyone else.
The week in this post started on Monday 3rd August and ended on Sunday 9th August.
I was up by eight thirty and already at work. I planned out my week and then more specifically my day in my bullet journal before clearing my email inbox of rubbish and attending to the rest.
Next, I got to work on the ‘Back To Life‘ music video. Richard had sent me the first draft and I went through it clip by clip, making notes on what I liked, what I didn’t, any changes I wanted to make, any suggestions I had (all against their time codes). It’s not the most fun job in the world: staring at your own face for hours can get pretty draining, whether you’re a self conscious person or not, but I got it done and sent my notes back to Richard.
My main plan for the day was a writing session with Richard but I had a bit of time before our start time so I did some work on my next blog post before setting up our Zoom meeting. We’re working on multiple projects at the moment and we’d planned to work on some of my stuff that day. There was one song we’ve been working on for a couple of sessions now but while I liked the sound of the production, it just didn’t feel like it was the right mood for the song. So I made the slightly terrifying suggestion of starting over and coming at it from a different angle. That’s what we ended up doing, using different reference tracks and instrumentation. It sounded so much better by the time we called it a day.
We also spent a bit of time working on a second song, creating the basic shape of the track and deciding what sort of instrumentation fitted the mood of the song. So it was a very productive session, a very productive four hours.
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We hung up and I stretched out on the sofa, exhausted. I love writing sessions, whether they’re focussed more on the song itself or the production, but I do find them tiring and especially so when we’re working over Zoom. It’s just that bit harder to translate your ideas to the other person when the time lag complicates your communication or you can’t point to something on their screen and so on. I’m grateful that we can have our sessions at all but I do find them harder than face-to-face sessions and greatly look forward to it being safe to have those again.
I spent the afternoon and evening working on various blog posts with the TV on in the background. It was nice and gentle but I was still being productive, which definitely helps with my mental health and in turn, my ability to manage this period of time in general. Then I did some catching up with my diary before getting ready for bed.
I was just finishing up when I got a text from Richard with an MP3 attached, the song we’d spent most of our session working on. After our initial struggle with it, I was amazed by how good it sounded, how perfectly the new production fitted with the song. I went to bed, excited and proud of what we’d achieved.
Me and Mum got up early and headed for the nearby woods for a dog walk with one of our friends. She’s just recently gotten a rescue puppy (who is utterly gorgeous) and as well as seeing each other and catching up, she wanted some advice from us as (previous) dog owners. I had been really looking forward to it but I was also anxious about going out (a constant anxiety still) and then I almost had a meltdown, triggered by difficulties with managing my mask and my glasses. I don’t know if any of you fellow glasses wearers have struggled with this but my glasses rest right where the wire of the mask is and I constantly battle with keeping them both functional and at least somewhat comfortable. I’ve since bought a mask that doesn’t have a wire as my glasses keep the top in place but for this particular walk, I ended up doing a lot of it without my glasses, which (had everything been normal, wouldn’t have bothered me all that much) just added another layer of stress because I really had to focus on where I was putting my feet – I’m so short sighted that even the ground is very blurry without my glasses.
I hate sounding so negative over what was a really lovely walk – it was just an unexpectedly difficult start. It was wonderful to see this friend again and it was so nice to have some dog time, especially puppy play and cuddles. I’ve missed our dog so much since we said goodbye to him in January but I doubt any of us will be ready for another dog for a good while so this was a nice compromise. My anxieties aside, it was a very pleasant way to start the day, although I was a bit knackered afterwards. Exercise is an area that’s really suffered for me throughout lockdown so I think it was a bit of shock to the system.
We came home and I ended up having a pretty quiet day. I mainly worked on catching up with my diary – my Moby Dick – and spending time with my Mum. We’re usually pretty independent during the day and then come together in the evenings but that evening I had a movie date with a group of friends.
At seven, we started our video call and ended up spending an hour catching up and just chatting, which was really lovely. It’s been a long time since our last date for various reasons so there was a lot to catch up on and I think we’d all just missed each other’s company. Speaking for myself, I know that I’d really missed them and was just delighted to see their faces again.
Eventually we stopped rambling and got into the movie. We’ve been binging the Studio Ghibli films and this time, we watched Laputa: Castle in the Sky. I absolutely loved it. I loved the story and it was just so beautiful – I mean, they’re all beautifully animated but this one seemed particularly stunning. It’s definitely at the top of my list of Studio Ghibli films. We talked about it a bit afterwards and while we’d had differing opinions on the last film (Kiki’s Delivery Service), we all really enjoyed this one.
When we said goodbye and hung up, it was getting pretty late so I started getting ready to go to bed. I’m not sure if I’ve mentioned it already but over the last couple of months, I’ve been struggling with really bad pain in my arms, from shoulder to finger tips. That night, my right arm and shoulder were really, really hurting and even though my Mum gave me a massage, it was still really bad and made it difficult to get to sleep.
I slept really badly because my shoulder was so painful. Every time I rolled over and put my weight on it, I woke up and had to readjust my position and then get back to sleep again. It wasn’t a restful night and I really struggled to wake up. As soon as my brain was fully awake, I felt the anxiety kick in; I just felt so overwhelmed by how much I feel like I have to get done before university starts, in whatever form that takes.
The pain in my shoulder only got worse as I used my arm so my Mum worked out a schedule of painkillers to keep the pain at a minimum and keep me using it so I wouldn’t seize up or start compensating with the other shoulder. It’s been a problem for a while but since it’s only getting worse, we decided to call my GP the next morning and try to get a Zoom appointment.
I did some admin for the upcoming release of my new single, ‘Back To Life,’ and then settled in to work on my photo albums. After finally finishing the organisation of my photo library, I’d selected the photos I wanted for my physical photo albums (which were about eighteen months out of date) and sent them off to be printed. They’d arrived that morning and so I went through them, slowly getting them in chronological order. It took all afternoon and I still had to put them into the albums but it was very exciting to be so close to finishing such a mammoth job.
Early evening, I did some more admin work, replying to some emails, and listening to some songs a friend had sent me to give feedback on. I’d left it a bit late in the day to do the whole lot but I managed to do an initial listen to all of them to get the overall vibe and an in-depth listen of a couple, making detailed notes of my thoughts and suggestions. So it was a productive evening.
Then me and Mum had dinner in front of The Mentalist, which we’ve been rewatching for a couple of weeks now. I love the show but I particularly love its second life, with the FBI team rather than the CBI team. *Spoiler Alert* We’d reached the episode where Vega dies, where they attend her funeral, and Jane and Lisbon discuss the future of their relationship when they work such dangerous jobs. It’s a heartbreaking episode and even though we’ve both seen it multiple times before, we both sat there with tears streaming down our faces. What can I say, I get attached to fictional characters. Like, very attached.
It had been pretty hot all day so it took me a while to get to sleep. I don’t do well in the heat so I was dreading the predicted heatwave.
One of my cats, Lucy (or Queen Lucy as we often call her due to her being the cat we’ve had the longest and therefore the cat that rules the house), woke me up at four, yowling loudly as she played with a toy. At almost any other time of day, it would’ve been very cute but at four am, not so much. It took me ages to get back to sleep.
I got up at nine and finished listening to the songs I’d started working through the night before. I wrote down all my feedback for the remaining songs and then listened to them all again to see if any new thoughts came to me. I also included questions about various lyrics and production choices, challenging the meanings and choices so that everything would be really tight and cohesive. I was deliberately picky, as my friend had asked me to be (sorry, I’m being deliberately vague about who it is because I don’t want to announce anyone’s project before they have). As good friends, they trust my critique, rather than feeling like I’m being critical; we’ve worked together a lot so we trust each other to just want the song to be the best song possible.
That done, I spent a couple of hours catching up with my diary (I’m just so behind at the moment) and then had my therapy session at four. We spent most of the hour just catching up on the week and talking about how I’d managed the challenges and the difficulties that had come up. With the pandemic, we’re doing A LOT of distress tolerance. I do wish we could move forward and work on some of my long standing issues but from past experience, I know that when you start to unravel some of those things, you often feel worse before you feel better and I just don’t think I can handle that right now. I’m just about managing to cope day to day and I really don’t want to make things worse for myself when I’ve worked so hard to even get to this point with the pandemic going on.
I FaceTimed with one of my parents while my Mum had the Zoom appointment with the doctor. I still struggle with talking to doctors, I’m still figuring out how to do Zoom meetings with new or less than well known people, and I struggle with communication in general. So me and Mum talked about everything we wanted the doctor to know and then she did the call. She was on the computer for a long time but when she came back, she did have some good news although a large chunk of the plan does involve waiting, which I’m not super thrilled about. But my doctor has adjusted the medication plan a bit (she’ll prescribe me something stronger if it continues to get worse but for now, we’re sticking with over the counter stuff to avoid extra side effects) and referred me to occupational rheumatology where they’ll probably fit me for support braces or refer me on to physiotherapy or both. But that’s unlikely to happen for a while. So pain medication, massage, and trying to build or improve habits that at the very least don’t make the pain worse. I’m limited exercise wise by not being able to swim but we’ve set up a rough badminton court in the garden to allow for some gentle exercise, especially for my arms and shoulders.
Me and Mum had an early dinner with The Mentalist. *Spoiler Alert* We’d finally reached the final episode where Jane and Lisbon get married and it’s so lovely to see them all so happy, especially Jane, after going through so much sadness and struggle. I wasn’t convinced by their relationship at first but then I fell in love with it and watching the wedding scene usually results with me grinning like an idiot or actually crying at how sweet it is.
I was just thinking about going to bed when Richard texted me to remind me that we were announcing the release of ‘Back To Life‘ the next day, which had somehow completely slipped my mind. I swear, the pandemic has completely messed with my head – life pre-pandemic feels a bit like a dream and the way we did things feels kind of hazy. So suddenly I was in a panic about what to say when I announced the release of the song, especially one with the title ‘Back To Life’ during a pandemic (something that’s been bothering me for a long time). So I ended up spending more than an hour (at least) figuring out how to say what I wanted to say and how to say it in the best way possible.
I finally got to bed around midnight but it was so hot that, even after I discarded my duvet, it still took me a long time to get to sleep.
Lucy was gracious enough to let me sleep until five this time before waking me up, chasing a toy around my room, and then I couldn’t get back to sleep as hard as I tried. It was very frustrating.
When Mum got up, we had breakfast and rewatched *Spoiler Alert* the wedding scene in the final episode of The Mentalist, grinning like the sappy idiots we are. No regrets. It was a nice, positive way to start the day, watching characters you love get their happily ever after.
I spent the morning working on my blog post about JK Rowling’s recent transphobic comments and how complicated it is to reconcile a childhood hero with the problematic person they are in the present. I’m absolutely not condoning what she’s said or making excuses for her – if you’ve read the post, you’ll know that I refuse to support her while she makes such insensitive, harmful statements – but I also wanted to comment on some of the other connected issues. While her transphobia is without question the most important issue here, there are multiple points within the overall problem, like how her prejudices may have bled into the books and how difficult it is to make sense of these two different versions of her. I wanted to explore as many of these thoughts as possible.
It was so hot by the middle of the day that I felt like I was melting; I didn’t want any part of my body to touch any other part. It was horrible. Thank god for the fan I bought a few years back. I was reluctant because it was pretty expensive but having had several unbearably hot summers in a row, it’s been amazing; I would’ve been unable to function without it. I’ve only just been functional with it.
Early afternoon, I had a Zoom session with Richard and we mapped out a more detailed plan for releasing all the content around ‘Back To Life‘ before working on some of his music. We’ve always been a well matched pair because while his strengths are more musical, mine are more lyrical and so we’ve always been able to support each other really well. That’s one of the things that’s always felt really special about our working relationship.
Eventually I got too tired to do much good, so we scheduled another session and I had a rest, doing some blog writing with the TV on in the background.
In the evening, one of my parents – who, I guess, is in our bubble – came over and, while I don’t think you have to social distance if you’re in a bubble, we had dinner and hung out, still keeping a certain level of distance. The three of us are continuing to remain pretty isolated but it still feels sensible to stay somewhat distanced for the most part.
At seven o’clock, my alarm went off and I posted my announcement on my social media accounts…
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The fourth single from the Honest EP, written with the amazing @scottcolcombe (and produced by @laurend_d and @richardmarcmusic, who are both incredible), will be released on the 14th August! SWIPE TO SEE THE TITLE ➡️ Given the difficult and often distressing times we’re currently experiencing, I seriously considered delaying the release of new music, especially as we reach the more upbeat songs on the EP. But I didn’t want to leave the story half told. This song represents the upward turn after a painful chapter of my mental health and it feels important to include because while there are brutal lows, there are also wondrous highs. They’re all important and all part of the journey.
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That done, I felt able to be more present and enjoy the evening and although I was really tired, it was really nice to hang out with my parents. With times such as they are, I never take those moments for granted, especially since I’m not able to see all of my parents yet, together or apart. We don’t have to DO anything in particular; it’s just so nice to be together and talk face to face. It’s still so ingrained in me to greet people with a hug or squeeze their hand that I have to actively struggle against those automatic motions but it doesn’t make me want to burst into tears anymore. I’m just really looking forward to being able to do it again.
When she left, me and Mum settled down with Rizzoli and Isles, another show we haven’t watched in years, and I did some blog post writing. I absolutely agree with the philosophy that our productiveness isn’t tied to our worth as people – I wouldn’t debate that for a second – but I’ve also discovered that being productive plays a massive part in managing my mental health, even if it’s as simple as watching a movie that I’ve wanted to watch for a while but not gotten around to doing so. I guess it just depends on your definition of being productive – I don’t necessarily equate it with ‘producing’ something; it’s just doing something that I intended to do. If I intend to have a quiet and restful day and I do, then I have been productive.
I woke up far too early, which was annoying because I was still tired and sleepy but I definitely enjoyed the cool and the quiet. It’s my favourite time of day – before the world wakes up and starts rushing around, making so much noise – and we were due for another really hot day so I relished the cool air.
I had as quick a scroll through my social media as I could manage, having not been on it for a couple of days (apart from posting about ‘Back To Life‘). As I’ve said previously – during this time – it’s been better for my mental health to stay away from social media but then I do miss seeing what my friends and family are up to. So I’m trying to find a balance and for the most part, I think I’m doing okay.
That done, I settled into the living room and got to work, putting Friends on low for background noise. I posted my blog post about exam results and then spent the rest of the morning working on other blog posts.
By the middle of the day, I was really struggling to do anything because it was just so hot. I felt like I was melting and my brain seemed to be functioning very slowly, not unlike my laptop, which was definitely overheating with the fan whirring loudly. So I decided to take a break and work on something that required much less movement and brain power: slotting my newly organised photos into my albums. I also used the time to watch a film from my To Watch list – one of my New Year goals was to consume more new content rather than just familiar favourites and the lockdown has a good time to do that. It’s been good for me in other areas too. I’ve been challenging my songwriting skills and trying to write from the perspectives of different characters instead of just from my own life experiences and finding new characters and stories that inspire me has made it a really enjoyable practice.
I ended up watching Fantasy Island (mainly because I love Maggie Q), where a group of people arrive on a tropical island after winning a competition, their prize being to have their greatest fantasy fulfilled. I’d seen quite a few negative reviews of it but personally, I really enjoyed it. It wasn’t life changing but it was interesting and the twists and turns were cool. It was good entertainment and made for a mentally restful afternoon.
In the evening, me and my Mum had dinner together with a couple of episodes of Rizzoli and Isles and I spent a couple of hours working on blog posts. As usual, I put off going to bed, partly because my room was so hot. Again, thank god for my fan.
I slept long and deep, a welcome experience after months of restless sleep at best. I did have some strange dreams, but not disturbing ones. One included a storm cloud on fire, which was incredibly beautiful – much better than some of my previous dreams. I didn’t get up until almost ten but then I dived into the day, intent on being as productive as possible.
I finished my previous week-in-the-life post and then had a music lesson with one of my parents. We worked on the chords for two of the songs I’m working on and then had a long conversation about reharmonisation and how that works. I learnt about that during my BA by only briefly and that was several years ago so, with the Musical Language module coming up, I definitely needed a refresher. We might need to go over it again just to give me a quick reminder but I feel like I’m pretty solid on the basic principles. So that was good to do.
By the time we finished, it was so hot that I didn’t want to move. I lay on the sofa and watched the second series of Liar. It had been airing when we went into lockdown and it just slipped my mind; it only came back to me a month or so later and by that time, it was gone from ITV On Demand. I’d resigned myself to never knowing how it ended but then it popped up on Virgin On Demand. So I watched that through the heat of the day. It wasn’t the best show ever – I felt like there were quite a few inconsistencies and plot holes – but I was glad to see how it ended. Plus I used the time to continue adding the captions to the photos in my albums. So, considering the heat, I feel like I was pretty productive. Oh, and I also posted the first teaser for ‘Back To Life‘ on my social media.
We ended up eating dinner outside on the deck in the cool darkness and then we went inside to watch Rizzoli and Isles with some much appreciated ice cream. I kept working on the photo album captions, making it to March 2020. I was almost giddy with glee at being so close to the finish line.
That giddiness shot through the roof when I checked Instagram to see how the teaser was being received and saw that Desmond Child (writer of Bon Jovi’s ‘Livin’ on a Prayer’ and Ricky Martin’s ‘Livin’ La Vida Loca’ to name just two of his more famous songs) had liked it. I have no idea how he found it but it all but short-circuited my brain. I mean, he’s in the Songwriters Hall of Fame! So that was very, very cool.
This is the screenshot I sent to Richard…
It took me a long time to come down from that high so I didn’t get to bed until midnight. I’m really not doing well with this whole go-to-bed-early plan.
I’m always hesitant to say stuff like this – probably because of a leftover childhood superstition that I’ll jinx things – but I do feel like I’m coping better mentally, that I’ve found a way of managing things day to day. I mean, I’m still not able to read or focus on anything involving big chunks of new information for extended periods of time but generally, I feel like I’ve found a routine that’s working for me. I’m still really struggling emotionally but I don’t think that’s really going to change until it truly starts to feel safe again. The fear and anxiety is just a constant presence in my life that I try to manage, to varying degrees of success.
Category: animals, anxiety, autism, covid-19 pandemic, emotions, meltdowns, mental health, music, sleep, therapy Tagged: a week in my life, actuallyautistic, anxiety, asd, autism, autism spectrum disorder, autistic meltdown, back to life, back to life music video, blog writing, blogging, castle in the sky, cat, cat family, coronavirus, covid-19, cowriting, dbt, degree, degree in songwriting, desmond child, dialectical behaviour therapy, diary, diary writing, distress tolerance, doctor, doctors, dog, dreaming, dreams, face covering, face coverings, face mask, face masks, facemask, facemasks, facetime, family, fantasy island, fatigue, film, friends, glasses, heatwave, indie artist, indie pop, indie release, jk rowling, journaling, laputa: castle in the sky, liar, liar season 2, lockdown, lockdown 2020, massage, masters, masters degree, masters degree in songwriting, masters degree year two, meltdown, mental health, movie, music lesson, music video, musical language, netflix party, new music, new music uk, new release, new single, pain, pandemic, pandemic 2020, pandemic anxiety, pet, photo albums, photo library, pop, production, productivity, reharmonisation, remote writing session, rescue dog, richard marc, richard marc music, richard sanderson, rizzoli and isles, self isolating, self isolation, singersongwriter, singersongwriter life, sleep, social distancing, social media, songwriter, songwriters hall of fame, songwriting, songwriting degree, studio ghibli, the mentalist, therapy, transphobia, tv show, unsigned, unsigned artist, video editing, week in my life, writing session, zoom, zoom calls
Posted on July 4, 2020
It’s been a while since I did a ‘week in my life’ post and I haven’t done one about lockdown, mainly because I feel like most of my days are incredibly similar, which wouldn’t exactly make for a scintillating post. But I saw the idea in my ‘blog ideas’ list and realised that over the last few weeks, I have managed to be a bit more productive (with my mental health fluctuating so wildly, it’s hard to really get into anything) and so each day is looking more like its own entity.
The week in this post started on Monday 22nd June and ended on Sunday 28th June.
Even though I don’t have anywhere to be, I’m still getting up relatively early, partly because I’m at my best mentally in the mornings (generally) and partly because we have five cats who are always very eager for breakfast. They’re actually really helpful when it comes to maintaining some kind of routine; sometimes I think it’s easier when there’s something external to build from, rather than trying to build it from nothing.
Cats fed, I settled on the sofa and replied to all the messages on my phone that were waiting for me. In times of mental distress (which there is a lot of lately), I tend to abandon my phone and withdraw from communications because it’s all just more than I can handle. However, it can then be a rather daunting task when I feel able to engage again. But I managed to reply to everyone and messaged some of my friends that I hadn’t checked in with for a while.
I spent the morning sorting through my tech box of electronics, my store of everything electronic, from spare pairs of headphones to camera equipment to cables I know longer own the devices for – I’m sorting through all of my possessions and this was next on my list. I went through it, throwing out the stuff that was damaged or so old that it was no longer useable, piling up some stuff to give away, and organising the remaining items by function. I certainly don’t need the big box anymore.
I didn’t stop there though. I went through all eight of the USB sticks I’d found, deleting the files I didn’t want and storing those I did. I now have multiple memory sticks empty and ready to go whenever I need them. And then I started on the hard drives, most of them assorted back ups of my laptop. That’s a job that’s going to take considerable time. But I’ve assigned each of them a function and started moving the relevant files. I can’t have done more than a quarter of the work and even that took most of the day.
Eventually I gave up, having spent so much time on it that I kept getting confused about which hard drive I was in. So I disconnected them, packed them away, and did a couple of hours work on my blog post for the kittens’ birthday post (here). Me and Mum had dinner together, continuing our rewatch of Nikita, and then I spent about forty five minutes at the piano, during which I recorded this:
Then we fed and settled the cats before going to bed.
It was a quiet day. I spent most of it working at my laptop, finishing the blog post for the kittens’ birthday the next day and writing the one about coming off Pregabalin (here). I also planned out the next few as well, with sketches of the rough post structures. So it felt like a pretty productive day, which I was pleased with.
My Mum and I usually work pretty companionably since her desk is in the living room and I tend to work from the sofa (it’s better for the physical pain that I usually deal with to some degree or another – I need to get a specifically supportive desk chair but I’d have to go and try them out, something I can’t – and wouldn’t choose to – do until it’s safe). But recently she’s been working at the kitchen table, paper spread out around her as she transfers her accounts to a new system. It’s weird, going from being basically on top of each other to almost feeling like I’m alone in the house.
We reconvened in the evening, having dinner with several more episodes of Nikita, and then I sat at the piano, playing for almost an hour, methodically practicing each of the songs I’ve been learning recently. Thank god my neighbours are so easygoing and even supportive of my music because I usually ending up playing fairly late at night and even though I try to keep it as quiet as possible, some noise does drift through the walls.
I was just going to bed when I got a Twitter notification that Ingrid Andress is doing a virtual show on Tuesday 30th June. I love her and was supposed to see her live when I went to the US (before the trip was scuttled by the pandemic) so that was really exciting. I went straight to my computer to get a ticket and thank god I did because it was already difficult to get a ticket. I also managed to get a meet and greet, which should be fun; I have no idea how it will work online (plus it will be about 3am my time…) but it will be really nice to see her again. I’ve been going to her shows and chatting with her afterwards for the last several years so I’m glad that lockdown won’t prevent that.
(Note from present me to past me: it was an awesome show and I really enjoyed my chat with Ingrid.)
It was the kittens’ first birthday so we didn’t delay in heading downstairs and presenting them with their present. They both had a go at it but it was Sweep that eventually managed to open it, revealing the birthday cake shaped toy. Despite not having had breakfast yet, they were both very excited and played with it enthusiastically. It remained in tact for about twenty minutes before Sooty managed to tear the felt flame of the candle off it… Sigh. Ah well. They don’t seem to mind.
Unfortunately, I ended up getting caught in a panic spiral about the loosening of lockdown (I know I’m not the only one who feels that the government cares more about the economy and their reputation than the lives of the British public) and the scientists declaring that they feel we’ll still be dealing with the pandemic next year, that a second wave is extremely likely. The idea of feeling so terrified and so unsafe and so worried for my loved ones (plus the uncertainty around my education and my career) for all that time is exhausting and makes me feel almost overwhelmingly sick.
In hindsight, it probably turned into a meltdown but I didn’t really process that thought at the time. The intensity of my emotions are so extreme at the moment that it can be hard to clearly identify them within the mess I’m feeling. In the end, I was so worn out that I fell asleep on the sofa and didn’t wake up for three hours, a common reaction to a meltdown, for me at least.
When I woke up, I didn’t feel better – that’s not how it works, at least for me – but my head was a little clearer. WordPress had been playing up on my laptop so I hadn’t been able to post the kitten birthday post but eventually I got it up, complete with a video of the kittens: one second a day everyday for the first year of their lives…
In the evening, I spent about an hour on FaceTime with one of my friends. We had a good moan about missing each other and the things we can’t do, drooled over the guitars we wish we could afford, made plans for the first time we can hang out properly again. It was fun and nice and as normal as you can get in a time like this. Mum had wandered in and out of the room during the conversation and commented that we sounded like we always do, hanging out as if we were on opposite ends of the sofa. That made me laugh.
We had dinner together and continued our rewatch of Nikita, staying up far too late.
I’d struggled to sleep with the heat so I woke up, still tired and with a throbbing headache. Not exactly the greatest start to a day.
I sorted the cats and then spent some time tidying the living room and sorting out my space: it had gotten pretty chaotic with the various stationary and electronics that I always have within reach due to my frequent need for them. It’s definitely better and I’m always calmer and more productive in a tidy space.
I’d intended to do some more organising of my hard drives but the rising heat (over 30 degrees) was only making my headache worse. I ended up lying on the sofa with my eyes covered, waiting for the painkillers to kick in, except I accidentally fell asleep and didn’t wake up until about three hours later. Thankfully I slept through the hottest part of the day: I don’t cope very well in the heat. The cats were struggling too, poor babies, stretched out on the cool of the kitchen floor. I’ve never seen them look so flat.
I didn’t manage a huge amount because the headache never really abated but I did get a few bits and pieces done: some research for the blog, some blog writing, watching a bit of TV. But most of my energy was focussed on managing the headache; I spent a lot of time with my eyes covered, blocking out the light.
Mum and I kept to our evening routine of dinner and Nikita rewatch (we’ve just finished season two, which has such a great finale) and then, to finish off the evening, I listened to the two tracks that Richard (my writing partner) had sent me and gave him my feedback. I loved them: they’re both really cool but I had a handful of comments that can hopefully be of use. I also sent him a song of mine to listen to before we start work on the production.
That done, I went to bed but it was so hot and humid that I felt like I could barely breathe.
It was so hot that I just couldn’t sleep. It wasn’t until about five am that I finally drifted off. It was uncomfortable and frustrating but as least I got to witness the incredible thunderstorm that started at about two. There was a lot of lightning and heavy rain, although not much thunder. I sat up and watched it for ages. I absolutely love thunderstorms; they’re my favourite kind of weather. The air just feels different and I feel lighter. Apparently thunderstorms create negative ions in the atmosphere and that’s where that feeling comes from (x).
I struggled up at eight thirty and managed to have breakfast and a shower in time to relax for a moment and collect my thoughts before my therapy session. It’s taken me a while to get used to therapy via Zoom and while I still think face to face is better (and I really miss it), I am really grateful for it. I know that going without therapy during this time would be incredibly damaging for my mental health. I think it’s probably fair to say that we’re not necessarily focussed on making progress right now, rather we’re focussing on managing my emotions and the things I’m struggling with in the present moment, like my overwhelming fear of going outside and my sudden inability to sleep properly to name a few. I mean, technically it all comes under distress tolerance, one of the fundamental areas of Dialectical Behaviour Therapy so I guess we are making progress in a sense. Anyway, we had a pretty intense session because of several tough things going on at the moment, not helped by my lack of sleep. By the time we were done, I was exhausted.
I had a gentle afternoon, watching Nikita with Mum, and then napped on the sofa for a couple of hours. Three hours of sleep really isn’t enough. Throw in a tough therapy session and I was completely useless. I wasn’t going to make it to the end of the day without a nap.
In the evening, we had a socially distanced dinner and movie with one of my parents (she doesn’t live with us). Despite keeping up to date with the briefings and doing my own research, I’m still really confused about what the official safety guidelines are so we’re just sure to be really careful: apart from seeing each other now and then, none of us go out for anything other than the essentials, we social distance when we’re together, and we keep the space (and ourselves) as clean/hygienic as possible. It’s hard not being able to behave naturally together – having to be so conscious of the risks all of the time – but it’s so, so good to see her and hang out and have just a touch of normality, even if it is only a touch. I’ll take what I can get. Getting to see her in person is better than not getting to see her in person.
Despite my nap, I was tired and so me and Mum had a quiet evening together. Exhaustion always makes my anxiety worse so I just needed some time with her. Sometimes we joke that, rather than an emotional support animal, I have her: my emotional support person.
Always far too late (I swear I’m trying to maintain a regular sleep pattern), we fed and settled the cats before going to bed.
I slept better but still not well and I woke up feeling very anxious and unsettled, usually how I feel when I’ve had nightmares but can’t quite remember them – I definitely want to write a post about how the pandemic has affected sleep and the increased number of nightmares. It was still quite early so I stayed in bed, trying to shed the feeling. The cool, grey weather helped.
Eventually I got up, fed the cats, and managed to get a few good cuddles in, which also helped. Although nothing helped as much as the Diazepam I took.
I had a quiet morning, doing some admin, some blog post writing, and a couple of video calls to family and then I spent the afternoon catching up with my diary. The one mental health problem that hasn’t been too badly affected by the pandemic and lockdown is my OCD. It’s much easier – and quicker – to write down everything that happens when so much less is happening; before lockdown, busy days could take hours and hours to write up. My ability to concentrate has been seriously compromised by my anxiety so it still takes longer than it should but at least, with emptier days, it balances out a bit.
Mum and I had dinner, continuing our rewatch of Nikita, and then I spent some time at the piano. One of the things I really wanted to use my empty semester – and I guess, now the lockdown – for was improving my musical skills and at the moment, I’m just really in love with playing the piano. I’ve definitely improved already, which is really satisfying. I practiced my current repertoire and then tried to work out a new song. But it was tricky and I was tired so I didn’t get far before giving up – for the night, not on the song in general.
It was late but before going to bed, Mum (who used to be a full-time massage therapist, although it’s no longer her primary job) massaged my neck and right shoulder. My Trichotillomania urges have gone into overdrive since Covid-19 emerged and they’ve only gotten worse as time has passed. How I haven’t ended up with any bald spots, I have no idea. But because of my excessive pulling, my arm and shoulder have seized up and become really quite painful. The muscles actually hurt to touch but she was very gentle and I do think it helped.
We went to bed and I actually managed to get to sleep fairly quickly, which is a bit of a miracle at the moment.
I managed to sleep in a bit, which was nice, although I’d still had busy dreams. It took me a while to make sense of what was the dream and what was real and when I dragged myself out of bed, I felt slow and sluggish. Fortunately the cats had been very patient about breakfast. Having said that, they were very pleased to see us (and vocal about it).
I had breakfast and a shower, leaving me with fifteen minutes or so to clear my head before my music lesson. One of my parents is a professional musician and music teacher and as another of my goals for this period of time is to improve my understanding of musical theory, I’d asked a while ago if we could spend some time on it together (well, via Zoom). So, every Sunday, we dedicate a couple of hours (sometimes more if we’re on a roll) to working out the chords to a song, figuring out the rhythms to play, etc and then discussing the theory that underpins those things in that particular song. Then I practice it in the week before our next session. It’s hard work – I’ve always found theory quite difficult to really understand – but I do think I’m getting better, if slowly. I think learning it in a practical, applied way is helping and it’s much more fun than just trying to memorise it from a book. To my amusement, it’s basically turned into an attempt to learn every Kalie Shorr song because I love her writing so much but it’s also given me a new appreciation for the songs because I’m seeing how much more to them there is. As I said, it’s difficult and I’m exhausted afterwards (probably from the effort of keeping my concentration on it – a serious job at the moment) but it feels good to be learning and trying to improve my skills.
My concentration is always pretty poor afterwards but I did manage to get some blog writing done. I’m really enjoying this style of writing at the moment; it just flows really easily. I’m also trying to get ahead of myself by a couple of posts, creating a buffer of sorts, just in case I hit a period of writers’ block. That happened a while back and suddenly writing became really difficult and stressful, not exactly something I need more of right now. So I’m taking advantage of (and enjoying) how good and effortless it feels.
Early evening, Mum and I FaceTimed with my Granny. Mum speaks with her everyday while I join in every few days (sometimes in the frame and sometimes just in the room, adding to the conversation). We do the crossword together – something we’ve always done when we’re actually together – which is really fun and catch up on each other’s days. I worry about her, her age making her more vulnerable and her being alone during lockdown. We (especially my Mum and my aunt and uncle) try and talk as much as possible and suggest new things to do and new forms of entertainment (especially when her television died and no one would go out to fix it) but I still worry.
After we hung up, I tried to set up the laptop that had finally arrived from DSA, only to find out that they’d sent me the wrong one. Fortunately, I discovered that (sadly, I’m experienced enough with the problems of getting support as a disabled person to check) before I loaded all my files onto it. So we got in contact with them (and after a lot of back and forth) and they’re sending another one to swap it with. When this process is officially over – as in I’ve got the laptop and everything is signed off on – I will write a blog post about this whole process because it has been long and complicated and stressful and I think these experiences need to be out there.
Me and Mum had dinner with more Nikita and I did some more diary writing.
Somewhere closer to a sensible bedtime, we fed and settled the cats and went to bed.
I hope this was somewhat interesting. When I started writing it, I hadn’t counted on a heatwave that made me just this side non-functional for two days; I’d been hoping to be more productive. I know that we don’t have to be productive everyday but achieving something, even something small does help me to manage my mental health and keep my depression and anxiety from getting into a cycle that’s difficult to break out of.
Anyway, that was a week in lockdown: some routine and some different activities to mix things up. This seems to be the best approach for me. The routine is comforting but the variation keeps me from feeling like I’m in a time loop, living the same day over and over again.
I hope you’re all keeping safe and healthy in these times. I hope lockdown isn’t too traumatic for you and I’m sure you’re managing the best that you can.
Category: animals, covid-19 pandemic, emotions, meltdowns, mental health, music, therapy, trichotillomania, video Tagged: 365 days of kittens, a week in my life, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic adult, birthday, blog writing, blogger, blogging, cat, cat owner, cats, collaboration, concentration, coronavirus, covid-19, cowriting, dbt, decluttering, depression, dialectical behaviour therapy, diary, digital decluttering, disabled student allowance, dreams, dsa, facetime, family, feedback, focus, friends, hair pulling, headache, heatwave, ingrid andress, insomnia, journal, journaling, kalie shorr, kitten, kittens, laptop, little voice, lockdown, massage, medication, meltdown, messages, mum, music lesson, music lessons, music theory, musical theory, new laptop, newborn kittens, nightmare, nightmares, nikita, obsessive compulsive disorder, ocd, online therapy, pandemic, piano, pregabalin, quarantine, sara bareilles, singersongwriter, sleep, social distancing, social media, songwriting, therapy session, thunderstorm, trich, video calling, video calls, week in my life, writers block, writing, year of kittens
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.