Mourning A Public Figure

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:

  • Hopefully your loved ones will understand what you’re going through, especially if you’ve mentioned this person before or they’ve seen or heard you consuming their content, whether that’s listening to their music, watching their videos, or reading their works. If you can talk to someone close to you and at least get your emotions out of your body; sometimes I think that keeping the emotions stored inside your body only makes them harder to shift further down the road. (If someone you don’t feel comfortable telling the whole truth asks you why you’re upset, you can always tell them that a friend or someone you know has died – that will explain your mood and they’re unlikely to ask too many questions.)
  • You can express your feelings on social media, if you feel comfortable sharing with an unknown audience. Sometimes that can be too scary but sometimes it can be cathartic to put your thoughts out into the world, not knowing where they’ll go or who they’ll reach.
  • You can write a letter to the person who has died. I’ve always found writing to be a good way of getting my emotions out. If you want to, you could post it online if you keep a blog or something similar, or you could simply keep it for yourself as a reminder of what they meant to you and everything you felt at that particular moment in time. When it comes to such an emotionally charged moment, in the future you may want to remember everything about the experience. You may not, of course, but you can’t know that in the present moment.
  • I’ve always found journaling to be very helpful in coping with and managing the ebb and flow of my emotions. Since it’s just for me, I can feel and say whatever I like without fear of judgement, which I think allows me to move through each emotion with less friction. Putting words to what I’m feeling somehow makes it all easier to process and work through. It doesn’t necessarily mean those feelings go away, but the strength of them does become easier to cope with. And then at some point, they simply become a part of you, a piece in your mosaic.

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.

When Results Day Isn’t What You Hoped It Would Be

Trigger warning: This post contains details of an emotional breakdown and mentions of self harm.

So results day is coming up. The timeframe is much as it ever was: school grades will be released as planned: A Level results will be released on the 13th August and GCSE results will be released on the 20th August. Degree results tend to depend on the specific university. Despite all of the upheaval over the last several months and the changes made to the expected academic year, many people still took exams of some kind, worked hard on projects or coursework, and pushed themselves to attain the highest marks they could so, regardless of the unusual circumstances, the anxiety around these days is no doubt mounting.

As I’m in the middle of my course, I’m not currently awaiting any grades. I completed my second module back in April and received my marks not long after. But every August (and to an extent, January, when some modules are assessed), I think of all those anxiously anticipating those numbers or letters that they’ve been working towards for months, that their lives have revolved around for so long (not a healthy mindset, mind you, but one that society has entrenched in us and one that I’d like to talk about further at a later date). I think of those young people and hope that, whatever grades they have received, they are coping in a positive and healthy way.

What with my GCSEs, some in Year 9 and some in Year 11, my AS Levels, my A Levels, all the results during my degree, and now my Masters, I’ve had many, many a results day. And the majority of them have been absolutely fine, if not better than fine. Some of them have been downright amazing. But I do have one very negative experience that I think is important to share because chance are, at some point or another, we will all have a bad results day that comes as a shock. So I want to tell this story and then share some advice for dealing with a similar situation…

It was a chilly morning in March 2013 and I was anxiously awaiting the release of the Autumn module results with my friends. The only course I’d had an exam in was Physics and although I’d found it difficult, I finished it feeling like I’d done okay. Having been absent for a lot of secondary school due to ongoing illness, I’d missed out on a lot of foundation material so I’d found the course difficult but during the most recent parent-teacher evening, my teacher told us (me and my Mum) that she had absolute confidence in my abilities and that I was on track for a high grade. So when I opened my results and saw the little printed ‘u,’ I was initially confused. Surely it was a mistake. I’d always gotten good grades and my teacher had said such positive things. I waited restlessly for the mark to be confirmed and when it was, it felt simultaneously like everything went still and like everything was crashing down around me. I made my escape and headed for the more secluded of the two toilet blocks – I felt like every emotion I was feeling was visible on my face and I had no idea how to talk about it or how to pretend that I was fine. I needed to be alone.

I was crying before I even made it into the toilet stall and I sat on the lid, sobbing so hard that my chest hurt. I was gasping for air but it was like my lungs had pinprick holes in them, the air rushing straight out again.¬†Even to this day, I’m not sure I can explain exactly what I was feeling. It’s not especially subtle and sounds very dramatic but it felt like the world was ending. I felt like a failure and I felt like the only thing people would see when they looked at me was a failure.¬†All I was was this ‘u.’ All I was was ‘unsatisfactory.’ I couldn’t move past that thought. Everything else disappeared.

I don’t know how long I sat in that cubicle, crying and self harming, before my friends tracked me down. I wanted to stay there and hide forever but somehow, I dragged myself up and walked out to face them. I still remember the shock on their faces; I still remember looking at myself in the mirror, my face a mess of thick, mascara stained tear tracks and my arms covered in scratches. I looked as bad as I felt.

One of my best friends – someone I still consider a good friend despite the fact that we don’t see each other as often as we used to – took control of the situation, taking me off campus to a coffee shop where she gently coaxed the story out of me over hot chocolate. We both had to go back for classes but she arranged for us to talk to a mutually beloved and admired teacher at the end of the day. I wasn’t convinced but I was operating on autopilot, drained of the will to protest. So after my lesson (a lesson in which I didn’t say a word), we went to see this teacher and in her typical fashion, kind but direct, she told me about some of her experiences and talked me through my options. Then I went home and didn’t return for over a week.

It’s worth noting that my mental health had been deteriorating exponentially over the previous year, so this happened at a time when I was completely unequipped to handle it and it was a catalyst for a lot of big decisions. I dropped out of the physics course, partly because I wasn’t mentally healthy enough to manage the number of courses I was taking and partly because I was so distressed by the experience that I felt completely incapable of going back into that classroom and continuing with the course. Just thinking about sitting in that room triggered anxiety too extreme to function. And I can admit now that there was some shame involved too: I couldn’t bear the thought of my teacher and my class looking at me and seeing a failure. So I dropped Physics, completed the rest of my courses, and started seeking professional help for what were now obvious mental health problems.

To this day, I still struggle to open exam results. I work extremely hard and then, when the results are released, I’m very careful to open them at a time when I feel emotionally equipped to handle whatever they’ll say and when I have the time to process the emotions that I’ll potentially experience. I’ve talked about this a lot with my therapist, in general terms, but then we talk about it every time new results loom. Not long ago, she referred to the experience as ‘a trauma’ and the relief of having it validated for the distress it caused and continues to cause was so overwhelming that I swear my heart stuttered in my chest. After having so many of my experiences (and the ongoing problems they caused) invalidated, it was a really emotional moment. That day had a massive effect on my mental health and my relationship with education and still triggers debilitating anxiety.

Not all results days are like this. In fact, most of them aren’t and I hope that you – you, reading this – never have to go through an experience like this one, but just in case you do, here are some of the things that I’ve learned about coping with difficult results…


IN THE MOMENT

  • Get yourself to a safe place – Dealing with difficult emotions is hard enough in itself but factors like crowds of people, lots of noise, and so on can make it even more difficult. Whether you need to be alone or with a friend, somewhere quiet or somewhere too noisy to let yourself dwell (momentarily is fine, indefinitely obviously isn’t healthy), being in a place where you feel free to express your emotions can only make it easier to cope with the torrent of emotion.
  • Give yourself time to process your emotions – I always find that, when something huge and unexpected happens in my life, my emotions completely overwhelm me and while I know what I’m feeling right then and there, it often changes as the intensity recedes. I try not to make any decisions until everything feels more stable; if I do, I usually end up regretting them. So let your emotions flow and evolve and eventually simplify. Once that happens, everything will be clearer.
  • Talk it through with someone – Talking to someone (someone you feel safe and un-judged with) about what you’re going through can you help you process the emotions and make sense of what’s causing them, whether it’s a fear of disappointing people, a fear of damaging your future, or a fear of failure in general. Or something completely different and personal to you. And then, when you’re ready, they can help you put it in perspective and decide what to do next.
  • If it feels helpful, compare with your peers –¬†Whether this is a good idea can only be judged by you. Sometimes sharing can be a bonding experience; for example, if the exam or module was marked universally harshly, the shared emotions can help you deal with the situation. However, if you decide to compare your grades with your classmates, be careful about who you choose to talk to: some people may approach the problem with potentially invalidating positivity, some may have done worse and be sensitive about it, and so on. It’s not a straightforward choice and one that only you can make.

ONCE YOUR EMOTIONS HAVE SETTLED

  • Talk to your teacher(s) – Not only do your teachers know the system, they will also have seen and helped multiple people through experiences similar to yours. They will have useful advice and experience that they can share with you that will hopefully make it easier to decide on your next steps.
  • If you get feedback, assess areas to improve on – If your results come with feedback, read through it carefully and think carefully about how you can perform consistently in the areas you excel at and how you can improve in the areas you lost marks in. Having clear goals for your future work can improve not only your future performance but also help with negative feelings around your recent grades.
  • Think about whether you want to resit – Retaking exams can be a smart route to take because resits can give you extra time to learn the material and they can help you boost your overall grade. And if that overall grade affects your next steps, it may be possible to continue with that original plan, just a year later. However, resits eat up time, can distract you from whatever comes next – whether that’s working on new modules, new experiences in a gap year, etc – and challenge your mental health with added anxiety and pressure. Again, only you can make this choice but I recommend talking to multiple people with various viewpoints before making a final decision.
  • Consider getting extra help – Whether you’re starting a new module or resitting previous exams, support from a tutor or mentor might be helpful, both in your approach to learning and your overall grades. You might also find that you need some support with your mental health after upsetting results or in the face of moving forward in education so you may want to talk to your school’s counsellor or the pastoral care team or even your GP. It may also help to talk to a teacher, not specifically for mental health advice but for advice on who to talk to concerning this matter.

Despite the trauma of that day and the vivid images that come to mind whenever I recall it, there are three things that I actively choose to focus on:

  1. The absolute kindness of my friend – I don’t know how that day would’ve gone if my friend hadn’t come to find me, taken care of me, and taken me to talk to a teacher I trusted. While I wasn’t capable of properly acknowledging her help at the time, I am so grateful that she was there and that she looked after me in my most fragile state, nonjudgmental of my emotions, accepting of my self harming, and thinking only of how to help me. Whether we’re friends forever or our paths diverge, I will always remember and appreciate it.
  2. The words of my teacher – I so appreciate my teacher sharing her story with me and what she’d learned from it, even if I wasn’t really taking it all in at the time. I didn’t know it at the time but she helped. She really helped. I can’t remember her exact words (much of that day is a blur) but in essence, she said: there is always more than one path to get to where you want to be. I didn’t truly understand it at the time. I had a plan and I was going to follow it but looking back, she was right. I may not be literally where I wanted to be but I’m metaphorically where I wanted (and want) to be and more importantly, I think I’m where I’m supposed to be,¬†if a little battle-scarred.
  3. It was the beginning of a very important journey – It was a horrible day with far reaching consequences but it was that day that really made us realise that something was very wrong and we needed to do something about it. Of course, if you’ve read my other posts, you’ll know that my mental health journey has been and continues to be full of twists and turns but if not for that day, who knows how much longer I would’ve struggled before something pushed us into action. I thought it was the end of everything but in fact, it was the start.

This post turned out to be a lot longer than I’d intended but I hope it has been somewhat helpful. I hope you remember that whether your results are good or bad, whatever you feel is valid. You have spent years working towards this moment and it’s natural and totally okay to have strong feelings about them. It would be odd if you didn’t. You’ve worked hard for this. So feel what you feel and do what you need to do to make sense of this big, messy experience that you’ve gone through. It will be okay – maybe not in the way you expect but it will be okay. I can promise you that.

Mental Health Awareness Week 2020 – #KindnessMatters

This week is Mental Health Awareness Week. Originally, this year’s theme was going to be sleep but with the impact of the pandemic on the world’s mental health, the Mental Health Foundation changed the theme to kindness:

“We think it could be the most important week we‚Äôve hosted, not least because¬†our own research shows¬†that protecting our mental health is going to be central to us coping with and recovering from the coronavirus pandemic – with the psychological and social impacts likely to outlast the¬†physical¬†symptoms of the virus.”

Their website offers some really powerful insight into the importance of kindness:

“We have chosen kindness because of its singular ability to unlock our shared humanity. Kindness strengthens relationships, develops community and deepens solidarity. It is a cornerstone of our individual and collective mental health. Wisdom from every culture across history recognises that kindness is something that all human beings need to experience and practise to be fully alive.”

We all know about Captain Tom Moore’s incredible fundraiser and Dolly Parton’s massive donation towards researching a cure, as well as other wealthy and/or famous people giving money to various charities that support all kinds of people struggling during this time. These are all amazing acts of kindness but¬†the foundation are encouraging people to share acts of kindness they’ve experienced so I thought I’d list some of mine:

  • My street’s WhatsApp group – As many streets or communities do, my street has a WhatsApp group and the generosity displayed in it is really heartwarming. People are offering the use of various equipment, like ladders or gardening tools; people are offering to help those less able than themselves; people are giving things away for free, like packets of seeds, cooking ingredients, unwanted furniture, art that they’ve made, and so on. The sense of community has grown so much since the lockdown and that’s really nice to see.
  • My neighbour helping us to rescue my cat – When one of the kittens went missing, the WhatsApp group helped locate her (which has caused her to become somewhat of a local celebrity) and the owner of the garden with the tree she was stuck in was so lovely about letting us in to retrieve her (we were social distancing, of course). When I tried to get her and couldn’t, my amazing neighbour climbed all the way to the top of the ladder, got his shirt off while perched up there, and used it to drag her off the branch she was clinging too. He handed her straight over to me for a cuddle but asked for a quick cuddle with her himself to apologise for squishing her a bit while getting her down. He told my Mum later that he’s actually terrified of heights but didn’t even think about it while helping us. That actually made me cry. I’m so, so grateful to him – especially with a fear of heights – for getting Sooty down because even with us standing below her, she seemed absolutely paralysed and unable to get down.
  • The generosity of my neighbours – The family next door to us (the father was the guy who rescued Sooty) are just so lovely and have an allotment that they work super hard at. Whenever they bring vegetables back, they give us some and they often share cake or other gorgeous food that they’ve made. They’re honestly some of the most generous people I’ve ever met and I feel so lucky to have them as neighbours.
  • The trumpet player on my street – There’s a guy who lives in the street who has offered, via the WhatsApp group, to come and play ‘Happy Birthday’ on his trumpet for anyone who has a birthday while we’re in lockdown. It’s kind of bizarre but then the world is truly bizarre right now and it’s a lovely, special gesture for a birthday that could otherwise feel very un-special.
  • The handful of people helping my Granny – There are several people who have been helping my Mum’s Mum with her shopping and computer and series of electrical problems, as well as checking in with her (safely) to make sure she’s doing okay, and I’m so grateful. We speak frequently but we’re too far away to be helpful in the practical sense so I’m really thankful for the people making her life easier and safer.
  • The support of my module leader and tutor during the assessment period – This was a while back but still in the lockdown period so I think it counts. I found this assessment really stressful and difficult, whether that’s because I’m still not used to the Masters standard of essay writing or my mental health I don’t know, but my tutor, Dan – who is also the leader of this module – was so helpful. He helped me with sourcing material and gave me really useful feedback. The Masters course is the first time in education where, as an autistic person, I’ve felt truly, 100% supported in my learning, rather than being made to feel like a hindrance, a hitch in the otherwise smoothly running classes. This means so much to me, more than I can possibly articulate. While no autistic person should ever be made to feel this way, it still happens far too often so to have tutors be so accommodating (in such a non-judgemental way) has meant the world to me and made the course possible.
  • Kalie Shorr playing a song I’d requested during one of her livestreams – I said this multiple times but Kalie is one of my favourite musicians, Nashvillians, and people. I wouldn’t call us friends but we’ve met several times during my trips to the US and gotten on well (maybe one day we will be friends – that would be really nice). Since the lockdown began, she’s been playing a lot of livestreams, which has been really cool, and during one of those livestreams, she played a song that I’d requested. It’s an unreleased song, one that she posted a snippet of on her Instagram stories ages ago but I fell in love with it and had been desperate to hear more. So the fact that she actually played it meant a lot to me. And by some good fortune, that livestream took place when I was having a really hard week and it really lifted my spirits so I’m really grateful to Kalie for that.
  • My friend sending me a Sara Bareilles CD – I’m not sure now whether this was just before the lockdown or just after the lockdown started (anyone else having major issues with judging the passing of time?), but a friend of mine was passing on some CDs, knew how much I love Sara Bareilles, and sent me a copy of Little Voice. As I have the money, I’m slowly collecting my favourite albums on CD or even vinyl, so I really appreciated him gifting it to me.

Another one of the focuses of this week is to think about how to build a kinder future. I can’t explain it any better than they do so, again, I’m gonna post what they’ve said:

“We have a once in a generation opportunity not only during but also following this pandemic for a reset and re-think about what kind of society we want to emerge from this crisis.

Our own reports and others such as Sir Michael Marmot’s 10 years On report reveal how inequality is rising in our society and its harmful effects on our health. Life expectancy is falling for the poorest for the first time in 100 years. As child poverty rises, children and young people in the poorest parts of our country are two to three times  more likely to experience poor mental health than those in the richest. After the 2008 credit crunch it was the most vulnerable in our communities who experienced the severest consequences of austerity, with devastating effects on their mental and physical health. This not the hallmark of a kind society. We must not make the same mistakes after this pandemic. 

Applied kindness could have a transformative impact on our schools, places of work, communities and families. As the former Governor of the Bank of England, Mark Carney, has said, now is a time to put values above valuations. We must seize this time to shape a¬†society that tips the balance in favour of good mental health, for all of us, but especially for those who are most vulnerable.”

I have to hope that the kindness I’ve been seeing, the general community focussed behaviour and mindset will only continue after the lockdown ends, even though our lives will be busier, with work and school and so on. We’ll go back to our normal lives but that normal doesn’t have to be the same as the old normal. Hopefully we can build a new normal, one that’s kinder, more connected, more neighbourly, and more flexible, because of this experience with the pandemic and the lockdown. How beautiful would it be if we could create something so good out of such a difficult, distressing time? It won’t, of course, bring back the people who’ve died but perhaps it could be a tribute to all those who have suffered during this time. Maybe it’s na√Įve but I have to have hope.

I couldn’t make this post without acknowledging the incredible courage and strength and… kindness isn’t a big enough word by far… of the all the NHS staff, care workers, key workers, teachers (fuck the Daily Mail), and all those working unimaginably hard to protect us, keep us safe and healthy and moving forward despite everything going on. We can’t thank them enough. We’ll probably never be able to thank them enough. Someday, somehow, I’ll figure out a way to say ¬†a proper thank you, a way to give back and help people in their honour.

But coming back to Mental Health Awareness Week, the Mental Health Foundation are, as I said, encouraging people to share the acts of kindness they’ve experienced or witnessed, using the hashtags, #KindnessMatters and #MentalHealthAwarenessWeek on social media. You can find out more and access further resources through their website.¬†And to quote them once more:

“No act of kindness is ever wasted.”

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