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 18, 2020
As of today, we have been living in the ‘new house’ for two years. So it’s not exactly new. But after living somewhere for fifteen years, two years feels like nothing. In fifteen years, I became a person, my own person. Then I blinked and two years went by. It’s not even comparable.
There were so, so many good memories in the ‘old’ house: the late night games me and my brother would play where we made nests out of our bedding, bringing Lucky home at eight weeks old, listening to the same Annie Lennox CD every year as we decorated the Christmas tree, evenings watching TV as a family, my Dad telling us made up Harry Potter stories until we fell asleep, waking up to Snubby curled up on the pillow next to me even if it meant a mouthful of fur, big dinners with family and friends, bringing Lucy home, things as simple as coming home to the living room windows open and Wimbledon on the television. There are more good memories than I can count.
There were also bad memories, like my Mum crying after her Dad died, coming home after being bullied at school, watching my brother come home after being bullied at school, the early meltdowns, Lucky getting sick, having my heart broken for the first time, being told my cat was terminally ill, taking her to the vet that last time and coming home without her… finding out that my Dad had died. They aren’t memories I want to spend time with but they are moments that made me who I am and so I need them safe. And those walls kept them safe for years. But memories aren’t like possessions. You can’t pack them into a box when you leave a place. So what if you reach your new house and they haven’t travelled with you? At least not with the same clarity, in the same condition, that they were in where you previously lived? What if small details have been left behind?
“So what is it that makes us mourn the loss of a structure? It’s not the great architecture, or the way the light pours in through the windows in the morning. It’s the loss of the vessel that held our memories. It’s almost as if leaving a home rich in such a lived-in history causes our memories to spill out everywhere, and we feel like we’ve spun out of orbit, scrambling to collect them… But we have to remember that we have lost the vessel, not the memories. We just have to build a new place to hold them.” – Kelli Kehler on Design Sponge (x)
Over the last few weeks, I’ve been walking around, looking at the house and trying to figure out how I feel about it, how I feel about the fact that it’s been two years since we left the place that I’d always considered home. I’d never thought far enough ahead to consider anywhere else home. This is where I live now – I know that – but when I think of home, it’s the old house. But that’s not home anymore either because it’s got other people in it who will have changed things – who will be filling it with their own memories – so I’m not sure where ‘home’ is. In a way, I feel kind of homeless. It doesn’t help that even though we’ve been here two years, we haven’t had much time to do anything to make it ours. Not really.
It’s a grieving process. And it’s one that hasn’t been properly dealt with because there’s been so much going on: medication changes, going back to university, challenges with my mental health. To say it’s been hard is a pretty huge understatement. It’s been one of the hardest things to happen in my life.
But I guess there’s a reason we call it a grieving process. Because it is a process. Our feelings change day to day. We move forward, we move back. Our emotions heighten, they settle, and then they heighten again. It’s ever changing. So rather than sum up the last two years, I’m trying just to think about now and when I think about now, this is what comes to mind: most days, it’s okay or it’s at least not something I think about. But there are still days where I hate it, where it feels like I’m walking around wearing someone else’s skin.
I’ve read various articles about moving out of your childhood home and adjusting to a new house and something that came up a lot was finding things you like about your new surroundings and where you find things you don’t like, try to figure out why and what you can do about it.
So here are some examples…
What do I love about it?
What don’t I love and how can I change those things?
Me and Mum have been talking about this, about this feeling, for quite a while. But with my Masters, I haven’t had the time or the energy to do much about it. And Mum’s been working and helping me manage everything. But my second semester is ending and we’re stuck in lockdown so we’re planning to carve out some time to get more comfortable here – or get me more comfortable, at least, as the one more sensitive to this issue. We won’t be going out to get paint or new tiles or anything like that given the current situation but since we’re both stuck in the house with some extra free time, we thought we’d start with the things we can do while in lockdown, like putting up pictures. We also have a scale drawing of my room and cut outs of my furniture and have been moving them around to try and create a set up that is both practical and feels right to me, enough at least to try out.
So we’ll see how it goes. Nothing’s going to change overnight, but then what does? One step at a time, hopefully this house will feel more like home.
Tips for moving out of your childhood home. (x)
Category: about me, animals, anxiety, covid-19 pandemic, death, depression, event, meltdowns, mental health, quotes Tagged: childhood, childhood home, coronavirus, covid-19, decorating, emotions, family, feelings, finding home, grief, grieving, grieving process, growing up, home, house, lockdown, lockdown 2020, memories, moving house, new home, new house, quarantine, quarantine 2020, redecorating
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.