Posted on December 5, 2023
This week, from 2nd to 8th December, is National Grief Awareness Week 2023, run by The Good Grief Trust. The goal of the week is to create opportunities for people to discuss the loved ones they’ve lost and their experiences with grief in safe spaces and with people who’ve gone through similar events and emotions. After all, it is often easier to talk about difficult things with people who can relate. The organisation encourages people to put on events and arrange group meet ups during the week – online or in person – providing that safe space to talk.
For my part, I thought I’d share something that had a really big impact on my experience of grief, a line of thinking known as the Continuing Bonds Theory of Grief…
When I was thirteen, my Dad died very suddenly. He’d lived with a chronic illness for years but he developed pneumonia and quickly deteriorated (there’s a lot more to this story but I don’t think the post is big enough for all of it and it would distract from the point I want to make – maybe I’ll come back to that another time). Initially I scrambled for ways to remember him, still in a haze of shock and disbelief: I kept candles lit; I wrote letters to him; I bought the CDs of the music we listened to in the car. But after a while, that just hurt too much and I pushed all of those things away. And it was a combination of that, the lack of casual reminders (since I didn’t live with him and therefore didn’t have anything of his around me), and the fact that my family didn’t really know how to talk about what had happened, that resulted in a strange strange period of my life where… it wasn’t that we pretended he never existed; we just seemed to move around the metaphorical empty space with such focus that we didn’t even think about what we were dancing around. And that’s just how things were, from my perspective at least.
For a long time – for years – I didn’t talk about any of it: how much I missed him, how much it hurt, how disconnected I felt. I didn’t know how. I also avoided anything that reminded me of him. It wasn’t until I was in my early-to-mid twenties that I started to willingly – if cautiously – engage with the things that reminded me of him. I rewatched Hot Fuzz, a film we watched together (interesting choice, Dad); I reached out to a friend of his in the hope of getting answers to some of my long held questions; I even started to explore with the world of superheroes that he loved so much. I rewatched the Fantastic Four movies, the second of which we saw in the cinema together (plus there’s definitely a resemblance between Ioan Gruffudd, who plays Reed Richards, and my Dad so I do sometimes see Dad in some of the other characters he’s played, like Daniel Harrow in Harrow). I also watched Teen Titans from the beginning, an animated TV show that we had watched together on Saturdays and spent hours discussing, from the characters and their powers, to the storylines, to the silliest of jokes. All of those have remained special to me and after revisiting them, I moved further into that world. I watched films and TV shows that we most likely would’ve watched together and then endlessly discussed: I watched Supergirl (and I feel certain that he would’ve agreed with me that Season 1 was the strongest, when it was on CBS); we would’ve watched the new Fantastic Four movie and discussed the differences between it and the earlier ones; I would’ve nagged him until he watched Sanctuary with me and, when I inevitably adored Amanda Tapping (and he did too), we would’ve watched the entirety of Stargate SG-1 as well and he would’ve been the one to come to conventions with me (and I can absolutely imagine us dressing up); we would’ve gone to see Wonder Woman as soon as it came out in cinemas, her being my favourite DC character as a kid; we would’ve seen each of the Marvel movies and afterwards we would’ve compared favourite scenes before ultimately complaining how complicated the franchise was getting with every new film; and, most importantly to me, we would’ve watched Agents of SHIELD and Dad would’ve watched as the show, and specifically Daisy Johnson, became a new special interest that changed my life. I’ve always felt that superheroes, and the messages in their stories, are his legacy to me and that means a lot to me, even more so since it led me to Daisy. That’s something I will always be beyond grateful for.
Left collage: Teen Titans (top left), Hot Fuzz (top right), Fantastic Four (bottom left), and Justice League (bottom right).
Right collage: Sanctuary (top left), Black Widow (top right), Supergirl (bottom left), and Agents of SHIELD (bottom right).
Alongside this, I’d also started to write songs about what had happened, songs where I talked to him, songs where we had new experiences together. It took a long time to get to that place – I’d been writing songs for about five years before I felt able to do it – but once I did, writing those songs felt almost sacred, regardless of whether or not they were any good when I finished them. It is, of course, my job to put out music and, while there are multiple songs about my Dad that I’m very keen to release when the time is right, that’s never been something I even thought about when writing these songs: they have always been solely for me and my heart and my voice. That is true, to an extent of all my songwriting – I wouldn’t be writing the song in the first place if it wasn’t an expression of something I felt deeply – but there’s a… I’m hesitant to call it this because it’s such a hard feeling to define… a healing element to writing these songs that is just different to anything else I’ve experienced.
It wasn’t until a friend mentioned the theory of Continuing Bonds to me, a passing comment in the thick of university research projects, that I realised that that was exactly what I was doing. Both in engaging with superheroes and in writing songs about him, but especially the latter. From the first song I wrote, a song about feeling frozen by grief, my relationship with him actively continued, a new chapter in our story.
The Continuing Bonds Theory of Grief was developed by Klass, Silverman, and Nickman and laid out in their book, Continuing Bonds: New Understandings of Grief, in 1996. They questioned the existing models of grief that generally considered the process of grieving to be one where you eventually ‘let go’ of the person who has died, where any behaviour that encourages holding on is viewed as unhealthy and potentially harmful; they disagreed with this and proposed a new model where it’s normal and healthy for a person to hold on to and continue their bond with the person who has died, having observed many cases in their research where a continued bond had helped an individual to cope with loss.
Ask anyone who has any experience of grief and they’ll likely tell you that grief doesn’t just end. That’s a simplistic and frankly silly idea; just because a person is no longer physically there doesn’t mean that they no longer matter to you, that your relationship with them no longer impacts your life. Their death doesn’t cut your life into chapters of ‘with them’ and ‘without them.’ Many people consider grief to be a permanent entity but one that evolves, becoming more than just the pain of losing the person. We carry them with us and find ways to bring them into our present; the relationship – the bond – continues.
In my personal experience, it has been far healthier to engage with my memories of him and make art about my feelings than to try and ‘move on,’ to think of my Dad as belonging only to the first thirteen years of my life; I suffered more in the years when I didn’t think about him compared to the years since I started writing about him and to him. Before, there was only grief but now, even though the loss and the grief are still painful, that isn’t all there is. He might not be physically present in my life but he does have a presence: engaging with the things he loved, as well as the things I feel sure he would’ve loved, and writing the songs that keep him alive and here are, in general, really special experiences. As I said, I’d love to release these songs as a project at some point; I think that would be a really lovely way to honour him and could potentially – hopefully – also help other people to cope with their experiences of grief. Maybe it could inspire and encourage others to nurture that continuing bond rather than suppress it. I wonder what amazing, moving art could be made in the process…
Other than making art to connect with a lost loved one, there are many ways to honour that bond between you…
Latest drawing is about continuing bonds theory: in contrast to narratives about getting over loss, this says keeping a relationship alive in a different way can be healthy and helpful
Share how you have you maintained bonds after loss in comments for others to see… pic.twitter.com/kC8J6cjzPm
— Juliet Young (she/her) (@Juliet_Young1) February 24, 2023
I hope that this week hasn’t stirred up too much distress, not that grief only exists during one week of the year of course. For some people, it can be validating to see so many people talking about grief but I know that it can also be very upsetting to suddenly have your social media feeds flooded with such stark reminders. I hope that, as hard as it may be to think about, that this post has been helpful in some way. The theory of Continuing Bonds – including the practical aspects of it before I knew what I was doing – has had such a big impact on me and I hope that, if it’s something you want, this has given you some ideas for how you might stay connected to your loved one.
Category: about me, autism, death, emotions, family, favourites, music, research, special interests, tips, writing Tagged: actually autistic, actuallyautistic, agents of shield, asd, autism, autism spectrum condition, autistic, autistic creative, autistic creator, autistic songwriter, autistic spectrum disorder, bereavement, childhood bereavement, continuing bonds, continuing bonds theory of grief, dad, daisy johnson, dc, death, family, father, film, grief, grief awareness week, loss, marvel, model of grief, mourning, national grief awareness week, national grief awareness week 2023, ngaw 2023, ngaw2023, sci fi, science fiction, singersongwriter, songwriter, songwriting, special interest, superhero, superheroes, theory of grief, tips
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

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.
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.
Finding Hope