Posted on April 10, 2022
TW: terminal illness and death.
Today is what would’ve been Claire Wineland’s twenty-fifth birthday and even though she died in 2018, I still think of her often. I wanted to do something for her birthday and since I hadn’t yet watched the documentary about her that was released after her death, I decided it was time to watch it, even if it would make me cry (not much of a spoiler: it did). She was an incredible person and it breaks my heart that she’s no longer here, that she didn’t get the chance to live a life she fought so hard for and saw so much potential in.
As I said, I wanted to honour her birthday so I sat down and watched the documentary; here are some of my thoughts…
It’s a beautifully made documentary and a beautiful tribute to Claire and the message that she dedicated her life to sharing with people. You get a real sense of her: she’s so articulate and eloquent but she doesn’t take herself too seriously (and ‘Little Claire,’ as she refers to herself, is so cute). So much of what she said was so poignant and moving and, as always, I felt deeply inspired by her words. It also gives you real insight into what living with Cystic Fibrosis is like, as much as you can as someone on the outside, and while her experiences are very specific to Cystic Fibrosis, I could also see a lot of broader parallels as a person with multiple disabilities.
I found the second half (approximately) especially emotional because I remember experiencing it in real time: watching her videos, donating to her gofundme and watching the total rise and rise, watching her live on social media when she got the call from the hospital for the transplant, waiting for news, and then finally hearing that she’d died. I remember it all so vividly. And seeing the video about needing new lungs now, hearing her say, “There’s so much more I wanna do,” makes me so deeply sad because everyone was so hopeful throughout the transplant process but then, suddenly, it was over and Claire was gone. There was so much she wanted to do and she truly saw how much she could do in this world and she didn’t get the chance; that still makes me so very sad.
The montage at the end was gorgeous and the ending was perfect. As I said, it’s beautiful and I feel like, as familiar as I was with Claire’s videos and therefore her approach to life and so on, I walked away from the documentary with a better understanding of her and her message.
There are so many great quotes throughout the documentary but here are a few that stuck out to me…
I will also be making a donation to Claire’s Place Foundation as well. Claire had a profound effect on my life and I want to pay that forward. I’ll never been able to thank her for how she’s helped me but I can do my best to follow the example that she led by, to follow the message that she embodied.
I really recommend watching this documentary, especially if you or someone close to you is living with a serious illness or disability. Having said that, it’s very emotional so please take care of yourself if you’re going to sit down and watch it.
I’m sending all of my love to Claire’s loved ones, especially today.
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.