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 April 25, 2020
So, that’s it. I’ve finished the second semester of my Masters Degree. That’s a very weird thought. I kind of can’t believe I made it. But I did. And I wanted to write about it, like I wrote about the first semester because all of this is weird and wonderful and difficult and part of the journey.
This semester, the module I studied was called Musicology (“the scholarly analysis and research-based study of music”) and my classes were split into two different blocks. The first was a series of lectures, each based around a different artist/songwriter and a specific element of their career, like David Bowie and identity, Prince and authenticity, and Max Martin and his use of melodic math (not all of them were men – these are just the ones that are coming to mind as I write this). I’d expected it to be based more around elements affecting music and it’s creation and consumption, like the history of certain genres, feminism, the constant evolution of technology and social media, rather than specific artists but maybe that was a misinterpretation on my part or simply a different approach that could’ve been taken. I don’t know. It was interesting and I learned a lot but a lot of the reading was very academic which I struggled with, given that I’m having some trouble with what you’d probably call my cognitive processing. Having said that, we had a great tutor who is really passionate about the module, which made it so much more enjoyable and engaging than a lecture heavy module could’ve been.
The group was larger than I was used to but there were a lot of familiar faces, including my two closest friends on the course. That was definitely a positive, both because I love them and because it helped me to adjust to all the changes. But it was also nice to meet some new people and get to know better the ones that I sort of knew and wanted to know better. So that was really nice, even if it took me a while to adjust to the new group dynamic. I’ve made some good friends from that class, even though it was cut short by the lockdown (I’ll get onto that in a bit).
The second block of classes were practical classes where we discussed in further depth the techniques we’d covered in the lecture class (the technical skills and application) and then we’d go away and write a song based on those techniques. Some of the briefs were really inspiring but on the whole, I found the whole exercise frustrating and a bit of a waste of time. We’d just spent a whole semester working on our creative process and tackling our blocks and weak areas and suddenly we had no time to work on them any further because we were focussing on and trying out other people’s techniques. I just feel like I was finally making progress, particularly in my musical ability (I’ve always struggled when it comes to experimenting with different chords and chord progressions), and suddenly that progress was being curbed dramatically, making it really hard to invest myself in the songs I was writing for this class.
The assessment for this module was a single four thousand word essay on anything related to songwriting. Most people choose a songwriter and then focussed on some aspect of their songwriting or the impact of their songwriting in a certain area, like feminism or the genre they were part of, for example. I really didn’t want to go through the overwhelming stress I went through at the end of the last semester due to lack of clarity around the assignments so I spoke to my Module Leader (who was also my tutor and a tutor I’ve known since my BA) really early in the semester so that I could be as prepared as possible and when I presented the potential subjects I had in mind, he gave me some really good advice: choose the one you’ll learn most from. So I decided to investigate Taylor Swift’s use of imagery and how that links to the authenticity in her songwriting, specifically in her song, ‘All Too Well.’ I thought that would benefit my songwriting the most, since those are elements that are important in my writing and therefore knowing more about them could only strengthen my use of them. So, alongside my classes, I slowly started to gather research about those topics.
I was still researching (I readily admit with the help of my Mum because I found myself struggling so much with the academic language and with my cognitive functioning) when the Coronavirus reached the UK. Classes continued but as a course (there aren’t a huge number of us and we have a group chat on WhatsApp where we’re in constant contact with each other) we discussed the situation and came to the collective conclusion that we didn’t feel safe travelling to and from uni, as well as being in the busy setting of a university. Our representatives contacted the senior staff and not long after, our classes were moved online. I think it was a week or so after that that the lockdown was announced.
Initially, not much changed for me, apart from the fact that I was no longer commuting to London for my classes. I attended the online classes, did my work, and researched for my essay. Determined not to go through a last week of panic writing, I got to writing as soon as I had enough material and added as I learned more. My tutor was fantastic in recommending sources when I got really stuck (there’s not as much research on imagery and authenticity in song lyrics as you’d think) and giving me some excellent feedback when I finished my first draft, still with plenty of time before the deadline. He’s been amazing throughout the whole module and I’m really grateful. I, again with my Mum’s help, went through the feedback and did the best we could to improve and strengthen the essay before submitting it just under a week before the deadline. So no last minute panicking. I think I did the best I could under the circumstances. But it wasn’t a solo effort. They’re my ideas and my words but I would NOT have been able to do it without my Mum’s support, and gentle pushing on the days where it just felt too hard. I couldn’t have gotten through the researching, the writing, or the editing without her. It is a better piece of work because of her help and I’m so incredibly grateful, both for her help on this assignment and throughout this module but also for her in general, for the ways she has supported me otherwise: helped me manage and protect my mental health, organised my life for me when it took all I had just to stumble through the days, for making sure I ate, even and probably especially on days when I didn’t want to. I’m so lucky to have her and I’m aware of that every minute of every day.
It’s been a weird semester. In a lot of ways it was smoother than the first, both because I was getting the hang of my routine as a Masters student but also because my mental health was more stable, if not necessarily better. I had some great, cherished times with my friends but then they were all suddenly ripped away without proper goodbyes by the lockdown (thank god for video calls). I got to do some really fun cowrites, which were then suddenly stalled for the same reason. They can be rearranged and done by FaceTime or Zoom but it’s not the same: I find it much harder to be creative WITH someone when we’re not actually in the same room (plus the lag time makes singing or playing together a real challenge). I’ll make it work because I love cowriting and I love the people I’m writing with but I do find it harder. I was also really enjoying the lectures and discussions we had in class and online classes just aren’t the same. So what was mostly a pretty positive semester was cut off in its prime and I do grieve the way things could’ve been.
I’m done now. The full-timers have another semester but I’m free until the end of September ish. I’ve completed the first year of my Masters Degree. That’s a very strange sentence to write out. There were many, many moments where I was sure I’d have to defer, despite the fact that the thought made me feel physically ill. But I made it. It was somewhat anti-climactic, given that we’re all in lockdown: I uploaded my assignment, clicked a button, and that was it. Year One done. I don’t think I could sum it – or the emotions I’ve experienced – up if I tried, not without writing a PhD length post. It’s been good and difficult and inspiring and more stressful than I could’ve possibly imagined. I’ve learned a lot and I’ve met some wonderful people. I guess I’ll leave it at that.
Category: anxiety, autism, covid-19 pandemic, emotions, mental health, music, university, writing Tagged: academia, all too well, artist, assessment, authenticity, cognitive processing, commuting, concentration, coronavirus, covid-19, cowriting, creative process, essay, essay writing, facetime, feedback, focus, friends, imagery, lectures, lockdown, lyric writing, lyrics, masters degree, masters degree in songwriting, masters degree year one, masters part time, motivation, musical skills, musicology, online classes, online learning, part time masters student, quarantine, research, songwriter, songwriting, songwriting briefs, songwriting techniques, support, support system, taylor swift, video calling, zoom
Posted on December 31, 2018
This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.
The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.
I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.
I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.
And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.
Having said all of that, there have been good days, as well as good experiences on bad days.
By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.
I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.
I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.
There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.
And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.
I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.
Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.
So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.
“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)
Category: animals, autism, event, holidays, medication, mental health, music, treatment Tagged: 2018, 2018 in review, amitriptyline, anti anxiety, anti depressants, anti-depressant, antianxiety, antidepressants, anxiety, cat, claire wineland, clomipramine, concert, concerts, creative block, death, depression, family, friends, grief, halsey, happy new year, iceland, kitten, kittens, lamotrigine, life, lithium, maren morris, mental health blog, mental health blogger, mental health blogging, mental health treatment, mental illness, moving house, nashville, new home, new house, new year, performing, pregaballin, singer, singersongwriter, song suffragettes, songwriter, songwriting, support system, taylor swift, treating depression, venlafaxine, writers block
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.