Posted on October 10, 2020
One of the biggest days on the Mental Health calendar.
The theme this year is ‘Mental Health for All’ and this is what the World Federation for Mental Health said about that choice…
Psychosocial support and mental health national plans need to address the mental health consequences of the COVID-19 pandemic and its impact on citizens.
It is therefore of great significance and importance that the theme for World Mental Health Day 2020 will be:
Mental Health for All
Greater Investment – Greater Access
Mental health is a human right – it’s time that mental health is available for all. Quality, accessible primary health care is the foundation for universal health coverage and is urgently required as the world grapples with the current health emergency.
We therefore need to make mental health a reality for all – for everyone, everywhere.
It’s not a bad message in principal. Everyone deserves to have access to good mental health care, especially when going through the trauma of a pandemic. That would be incredible. But how governments will cope with all of the pandemic related cases when they can’t even handle the current number, I have no idea. In the UK, for example, they’d have to actively stop defunding the NHS and start directing funds back to it and specifically to their mental health services. And the system itself would need a drastic overhaul: we need a system of professionals that can accurately identify symptoms, prescribe medication, treatment, or a therapist if necessary, provide resources such as suggested reading and contacts for local support groups, and schedule regular follow ups. Even the language around mental health is long overdue an update. That’s a massive undertaking but if they can do it, then they have my full support.
But back to World Mental Health Day. This slogan makes me so angry that I almost couldn’t write anything today. Mental healthcare for all, right? We have to have a global pandemic that affects the mental health of the entire world for mental health to truly rise up the list of priorities? So… what? All of us struggling with mental health problems before the pandemic weren’t worth the effort? That’s what the message sounds like to me.
I was diagnosed with multiple mental illnesses at eighteen and Autism Spectrum Disorder at twenty, although I was obviously struggling long before we could put a name on what was happening. And that’s the simple version. The long version involves hundreds of hours of research and phone calls and appointments, tears and screaming and self harming, invalidated over and over and over again. Since receiving my diagnoses and getting support in various forms, when my physical and mental health have allowed me to, I’ve done everything in my power to raise awareness and support for those of us struggling with our mental health. I’ve donated money, taken part in fundraisers, volunteered for research projects, supported charities, attended conferences, and so on. I’ve created art about my experiences and dedicated the proceeds to charity.
I did not and do not expect to change the world alone with these actions but think about every single person who has been doing the same and more up until this point. The message being circulated today on World Mental Health Day with this slogan seems to invalidate all of that. To me, it feels like all of these organisations promoting this phrase are saying that we weren’t important enough before to dedicate serious help or resources to; that our mental health problems weren’t caused by a massive global trauma and therefore they aren’t as important; that there weren’t enough of us to make the effort worth it so they weren’t going to bother; “oh, but now look at how many people need help, that makes it worth doing.”
These organisations do a lot of great work and I’ve always had great respect for them but right now… this feels like a betrayal and a hard one to swallow. Maybe I’m the only one who feels like this, maybe I’m not, but this is my blog and my blog is where I come to talk about how I feel. So there you go.
More voices telling me that my experience isn’t important or valid doesn’t change anything though. I’ll keep working, I’ll keep writing, I’ll keep helping in whatever way I can. Because this is bigger than all of the politics and bullshit that constantly get in the way of improving the lives of people who suffer from mental illness. I truly wish I had something more positive to say, on today of all days, but I don’t. I’m angry. And I’m sad. And I’m exhausted. Never have I felt so let down by the community that is supposed to support me and after all I’ve experienced, that’s really saying something.
Category: about me, anxiety, autism, bpd, chronic fatigue syndrome, covid-19 pandemic, depression, diagnosis, emotions, event, medication, mental health, ocd, research, self harm, therapy, treatment, trichotillomania Tagged: anger, angry, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic adult, blogging, charity, charity work, coronavirus, covid-19, depression, emotional, emotions, fundraising, invalidation, lockdown, lockdown 2020, mental health, mental health awareness, mental health awareness campaign, mental health blog, mental health blogging, mental health charity, mental health for all, mental illness, national health service, nhs, pandemic, pandemic 2020, sad, sadness, world federation for mental health, world mental health day, world mental health day 2020
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 May 16, 2020
I’ve spent the past several weeks trying to write a post for today, about coping with a grief anniversary, about whether you can turn the day into a positive experience. I thought that talking about grief in a more objective capacity would make it easier to write about my own grief. I tried and tried and tried, intent on completing my plan, and it wasn’t until I actually considered the idea that I didn’t HAVE to do it – actually considered that it might be too difficult emotionally, especially with all the emotions surrounding the pandemic – that I realised how hard I was finding it. So, after a lot of thought, I decided to defer the post. I can always finish it for next year. But that left me emotionally depleted without a post for today.
After finding it so difficult and upsetting to put my own experiences into words, I found myself thinking about quotes, about how other people have put their grief into words. I’ve always found quotes to be a good way to make sense of what I’m feeling, especially the really complex emotions – and I think we can all agree that grief is one of the most complicated emotions a person can feel – so I’ve made a list of quotes that I have found helpful in describing my various experiences of grief. Of course, grieving is an ever changing state of being and it’s not linear or logical, just as these quotes prove, so hopefully everyone will find something in here that makes sense to them.
“Nothing on earth can make up for the loss of one who has loved you.” – Selma Lagerlöf
“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same, nor would you want to.” – Elisabeth Kubler-Ross
“The dead aren’t the only ones who vanish: you, too, can disappear in plain sight if enough is taken from you. I was still missing, in many ways. And I wasn’t sure I wanted to be found.” – Sarah Dessen
“My sister will die over and over again for the rest of my life. Grief is forever. It doesn’t go away; it becomes a part of you, step for step, breath for breath. I will never stop grieving Bailey because I will never stop loving her.” – Jandy Nelson
“Sometimes you have to accept the fact that certain things will never go back to how they used to be.” – Unknown
“Grief is like glitter; no matter how much you try and tidy it up you’re never going to get rid of it all. You’re always going to find bits of it.” – George Shelley
“When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time — the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes — when there’s a particular missing part that overwhelms you with the feeling that she’s gone, forever — there comes another day, and another specifically missing part.” – John Irving
“You were unsure which pain is worse — the shock of what happened or the ache for what never will.” – Unknown
“If you suppress grief too much, it can well redouble.” – Moliere
“Look closely and you will see
Almost everyone carrying bags
Of cement on their shoulders
That’s why it takes courage
To get out of bed in the morning
And climb into the day.” – Edward Hirsch
“‘You’ll get over it…’ It’s the clichés that cause the trouble. To lose someone you love is to alter your life for ever. You don’t get over it because ‘it’ is the person you loved. The pain stops, there are new people, but the gap never closes. How could it? The particularness of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is in the shape of you and no-one else can fit it. Why would I want them to?” – Jeanette Winterson
“It is a curious thing, the death of a loved one. We all know that our time in this world is limited, and that eventually all of us will end up underneath some sheet, never to wake up. And yet it is always a surprise when it happens to someone we know. It is like walking up the stairs to your bedroom in the dark, and thinking there is one more stair than there is. Your foot falls down, through the air, and there is a sickly moment of dark surprise as you try and readjust the way you thought of things.” – Lemony Snicket
“There is not a reason for everything. Not every loss can be transformed into something useful. Things happen that do not have a silver lining.” – Megan Devine
“Grief lasts longer than sympathy, which is one of the tragedies of the grieving.” – Elizabeth McCracken
“Some things cannot be fixed. They can only be carried.” – Megan Devine
“When you lose someone very close to you, someone who makes up this essential part of your history and your future, your worldview shifts dramatically. You have a palpable feeling that everything and anything good can disappear at any time. I missed my dad a lot. I also felt like everyone I knew was going to start dying. I also hated that my dad wasn’t able to go on living. I wanted him to be alive; I wanted him to feel rain on his face, to eat a great meal, to read something funny, for HIS sake.” – Heather Havrilesky
“Grief is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.” – Jamie Anderson
“Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone.” – Jiddu Krishnamurti
“Eventually something you love is going to be taken away. And then you will fall to the floor crying. And then, however much later, it is finally happening to you: you’re falling to the floor crying, thinking, “I am falling to the floor crying,” but there’s an element of the ridiculous to it — you knew it would happen and, even worse, while you’re on the floor crying you look at the place where the wall meets the floor and you realize you didn’t paint it very well.” – Richard Siken
“You can not die of grief, though it feels as if you can. A heart does not actually break, though sometimes your chest aches as if it is breaking. Grief dims with time. It is the way of things. There comes a day when you smile again, and you feel like a traitor. How dare I feel happy. How dare I be glad in a world where my father is no more. And then you cry fresh tears, because you do not miss him as much as you once did, and giving up your grief is another kind of death.” – Laurell K. Hamilton
“A reminder to remember: just because the sharpness of the sadness has faded does not mean that it was not, once, terrible. It means only that time and space, creatures of infinite girth and tenderness, have stepped between the two of you, and they are keeping you safe as they were once unable to.” – Carmen Maria Machado
“Until now I had been able only to grieve, not mourn. Grief was passive. Grief happened. Mourning, the act of dealing with grief, required attention.” – Joan Didion
“Life seems sometimes like nothing more than a series of losses, from beginning to end. That’s the given. How you respond to those losses, what you make of what’s left, that’s the part you have to make up as you go.” – Katharine Weber
“You never really stop missing someone – you just learn to live around the huge, gaping hole of their absence.” – Alyson Noel
“We must embrace pain and burn it as fuel for our journey.” – Kenji Miyazawa
“We acquire the strength we have overcome.” – Ralph Waldo Emerson
“The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because she experienced that thing too cannot be overestimated.” – Cheryl Strayed
“When you meet someone who’s experienced loss as you have, there’s an unspoken understanding. Grief and tragedy are blood lines that turn strangers into kin.” – Unknown
So I hope this has been helpful, that at least one of these have perhaps made your emotions a little clearer for you. If you have any quotes that have helped you process grief, please comment and let me know. Quotes mean so much to me and are so helpful to me so I’m always on the look out for new, maybe even better ways to explain what I’m feeling when I’m unable to do it myself.
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.