I am fairly sure there is no good way to start a reflective blog about 2020, so I guess I’ll start mine with that sentiment because, well… dear god. What a year.
It would be more than fair not to review 2020, I suppose, but I enjoy the reflective process of looking back at the end of December so I can start January with lessons learned and hope (or, in this year’s case, I guess some ideas of how to cope with current challenges) for the future. As always, this isn’t intended to just shine a light on the good parts of my year (that would make for a rather short post) but also on what I struggled with and the learning I’ve taken from it too. It has been one of the hardest years of my life (and most people’s, if not everyone’s, I’d imagine), and so I find it helpful to feel like at least there has been some movement or growth within it even so.
I decided to stick with last year’s review format, despite the monumental differences between now and then, because I think it still kind of works. That said, this year I’ve changed the “highlights” section to “strengths”, because… you know… reasons. Speaking of last year’s blog – this is the part where I share my aspirations for 2020… though if I haven’t achieved them (she types, looking at one word in particular) you’re not allowed to judge. Ok? Good.
This time last year, when a very different version of myself sat down to decide what I wanted the focus words for a very different year ahead to be, I said: connect (build stronger links with others and a better sense of community), create (make more time for writing and developing my art skills) and evolve (give myself permission to slow down and to change – even if that scared me). Let’s see how I did.
I was able to continue to create change from home
Anyone who knows me will know that meaningful work and volunteering are a huge part of my life, and I am so grateful I have been able to maintain both whilst staying safe at home.
I began the year, before the pandemic, working with YoungMinds a few days a week – delivering their Activist programme and overseeing the induction of a new cohort of young people – alongside facilitating Mental Health UK’s programme in schools. At the end of 2019, one of my key takeaways was wanting to give myself more stability with work to support my health – as, whilst the year prior had involved great achievement in my working life, my career success had come at too high a cost for my body and wasn’t sustainable. I took this intention with me straight into January and it paid off more than I could have imagined. During my three month contract with YoungMinds, a new contract position came up and I was offered the role in early March – four days a week until December, setting up and delivering a brand new project for a small group of our Activists to develop the skills and confidence needed to share their stories publicly to create change. As someone who loves innovating new programmes arguably too much, as well as having a passion for the power of storytelling, it felt like exactly what I needed – a stable contract that allowed me career satisfaction whilst respecting my body’s needs. I could never have imagined the stability it offered me would go much further than that. The week after accepting the offer, we were all ordered to work from home and the week after that lockdown began. I could not have felt more fortunate to have secured long-term work in that moment – a few months earlier and I would have been left with nothing.
The project has been a lifeline in a very difficult time – giving me focus and purpose. From designing our recruitment process to writing the training and supporting young people through opportunities, I have a lot to be proud of and grateful for. As well as knowing my work has been making a difference to the landscape of young people’s mental health at a time where it has never been more needed, having supportive colleagues by my side through it all has helped me more than I could say. My contract has since been extended too, and I’m looking forward to doing even more, and doing it even better, in 2021.
Alongside work, my role as a trustee for Action for M.E has also been a source of pride this year. Being able to channel my feelings of frustration and powerlessness about disabled people’s treatment in the pandemic into something meaningful has really helped. Alongside board meetings, this year I have joined our Communications, Influencing and Participation committee – feeding into our work on external affairs, including around the draft NICE guideline – as well as joining a working group for the development of our next strategy. I’m proud to have been able to be a part of this vital work this year, alongside my usual personal advocacy and awareness raising on social media.
For as long as I can remember, I have been driven by wanting to make a difference in other people’s lives, and this year being able to continue to do so made a massive difference to my own.
Creativity remained a source of comfort and forward motion
As the world locked down, and my life shrank to the square footage of my studio flat, my creative practice became a necessary part of keeping on going. There is a lot of evidence to show the links between creativity and wellbeing, and I feel like I have seen that in practice more than ever for myself this year. My creative practice has been a source of comfort throughout my life and I’ve been so grateful that wasn’t closed off for me in 2020, although it has looked very different to what I might have expected back in January.
I began the year with two artistic highlights – attending a weekly illustration course at House of Illustration – “Exploring Drawing” – and having my first illustrations published in the Dear Damsels annual. I found myself inspired to draw extensively almost daily, trying out new techniques I was learning on my course and considering how I could develop my skills further to see more of my illustrations in print. It seems natural, reflecting on that time, that when lockdown hit I turned to drawing first and foremost.
I used some of the savings I had pictured using on a holiday to invest in a refurbished iPad Pro and spent hours in the coming months sketching and designing through my anxiety onto its screen. For the first few months after lockdown began, I simply couldn’t write and so I poured all of my creativity into drawing, later finishing a self-love zine I had begun creating the year before and then exploring collage as a medium. Throughout 2020, art has been one of the greatest tools I have had for my wellbeing – offering me escapism and a clear mind in the moments where I’ve needed them the most.
It wasn’t until late May that my writer’s block began to subside, and I found my way back into writing again. At first, it was through finishing a personal essay I had been working on for months; it was a piece centred around the evolution of grief, sparked by the process of selling my grandparents’ house. After being stuck for weeks on end, out of nowhere it all came together in one Saturday and the brilliant Dear Damsels published the piece the following month, as part of their focus on “connection”. Finishing the essay allowed me to step back into my novel, which I hadn’t touched since February.
Slowly over the summer I began to place my focus back on my second draft, using progress on the book to give me a sense of forward motion at a time where everything felt so unbearably still. My surroundings may not have changed but my growing word count helped me to feel like change was happening. Even as I sat still for months on end, I was managing to work my way gradually closer to one of my dreams. I typed those two key words – the end – as August came to a close, just in time for one of the best experiences of my year.
In September, I was fortunate enough to be accepted onto a digital retreat for disabled writers, called “Experimental!”. The retreat was run by Spread the Word, and I was selected as one of 14 writers from across the UK to take part. Over the 7 days of the retreat, we spent 2 days a piece on poetry, fiction and essays, with masterclasses run by disabled authors such as Raymond Antrobus and Anne Finger, readings and industry Q&As and a final sharing session in which I read one of my favourite essays. The retreat was probably the highlight of my year, for so many reasons. The validation of being selected, the community we created as a group, the ideas sparked in workshops and the feedback I received. The retreat renewed my confidence and energy for writing, and gave me the push I needed to begin writing the first draft of a new book, which I am now about a third of the way through.
On top of the craft itself, attending other bookish events online as well as a number of different classes and workshops, has helped me to feel more connected and less alone; it’s been a vital motivation. This year has only secured the fact that writing – and creating – is something I have to do.
I was able to find community, even in isolation
Even though I had a small laugh when I saw the word “connect” in my end of 2019 blog, I do think I’ve gone some way to achieving it – just in completely different ways to what I had expected. When I chose that word as an aspiration for my year, I was picturing being able to connect more with people in person and to foster a sense of belonging to real life communities. Part of the idea of scaling work back was to leave more energy to spend in the real world instead of resting in my home, so in that aspect 2020 wasn’t what I had hoped for at all.
However, even in a year where I have spent the vast majority entirely alone, connection and community have still shown up for me. By working with the same organisation all year, I have found a caring and supportive community through work, both in office hours and outside of them, filling some of that space where I felt a sense of belonging was missing. I have also found community through writing – from both my existing writing group, the Write Like a Grrrl community and more recently through my fellow Experimental! alumni. I have been heartened by the friendships that have made this year more bearable – from weekends with a supportive bubble to regular TV watch-alongs. And finally, I have been stunned and uplifted by support I’ve received through social media when speaking up or sharing my challenges, in particular from the disability community.
This year it has been easy at times to feel like no one cares, but the people in my life – and many who don’t even know me – have shown me that’s not true, and that has helped me to keep going in the moments where I wasn’t sure I could. They’ve shown me community is so much more than being together in one room.
Going through 2020 on my own
As grateful as I am for all of the strengths listed above, including the invaluable care and support I’ve received, being physically alone for the majority of it has been perhaps the greatest challenge. I’m not sure I can explain it well enough for anyone who hasn’t lived through it to understand – going through it myself has made me wonder if before this I ever understood loneliness at all.
Going months without human contact and barely any human touch would be draining for absolutely anyone, but coupled with trying to manage my conditions – whose symptoms have been hugely exacerbated this year – alongside the anxiety of being vulnerable, has often made this circumstance feel impossible. I have essentially spent ten months on my own in one room, mostly in my bed because of my health. Having no one to help out or share the load on top of persistent fatigue, relentless insomnia and often unbearable pain has really tested me.
Being alone in this way also threw a harsher light onto aspects of my life I already wasn’t happy with – how I struggled to cope with the balance of work, chores and my health (let alone a social life) even without external stressors, how I already often felt isolated and alone, how I wished I had a partner by my side to champion and support me, how everything is always too much and I am left with too little as a result. Being able to acknowledge gaps in my life I cannot fill and feeling trapped with them, with no idea of when I might be able to try and make things change, has been exhausting. Especially when there’s so much time for me to think about them.
I have been doing what I can to stay positive – trying to make my life as manageable as possible, not beating myself up (too hard) if my flat is a mess, making digital plans to stay in touch with friends and trying to work towards goals I can control, but all the same I’m dreading yet more months doing this by myself. If you’re reading this and live alone too, please know that I am thinking of you and it’s ok to be finding this hard, and if you have friends who live alone please keep checking in on them as isolation continues – it makes such a difference to know that people want to help even if they can’t be with you.
Watching ableism become increasingly visible and commonplace
Another layer of challenge this year has been watching as the world became increasingly more comfortable with saying outright that lives like mine don’t matter. From the sighs of relief every time people saw that coronavirus deaths were predominantly among those with “underlying conditions”, to the repeated chant to lock up the vulnerable and the elderly so everyone else could “get on with [their] lives”. Recently this has evolved further, to the point where tens of thousands of deaths are being spoken about as if they aren’t important, and don’t count as reason enough to continue or tighten restrictions.
I wrote this recently on Twitter and I’ll say it again here. If you want to get even the smallest sense of what it’s like to see the value of your life debated on a daily basis, set an hourly reminder on your phone. The reminder should read “you don’t matter” – maybe put it in capital letters for extra shouty emphasis. You can’t set an end date, just set it to repeat every hour every day and you can’t turn it off. That’s a fraction of what living through this year has been like for disabled people. A resounding, relentless chorus we can’t avoid that tells us our lives are disposable and no one cares.
It hasn’t just become apparent in those who have said it outright, though. It has become apparent in all those whose social media feeds return to normal at every possible opportunity. From their snaps of an international summer holiday in the midst of a global pandemic. The pictures of their dinners out or their drinks, the lack of distancing in photos they’ve taken and proudly shared of them with their mates. It’s everywhere. Individual, single-minded decision making based on want, instead of community minded actions led by what the most vulnerable in society need. As I said in a rather popular thread I wrote back in November – if you aren’t considering vulnerable lives when you make decisions in a pandemic, you need to examine your ableism. And if you’re reading this and feeling defensive, you might want to examine why you’re feeling that way too. No one is owed access to travel or evenings out. Everyone should be owed the right to stay alive.
Disabled and vulnerable people really need non-disabled allies in this moment. We need non-disabled people to act and support us by reporting harmful content, having uncomfortable conversations with friends and family who are being reckless, and speaking up and speaking out about how every person’s life matters, as do every person’s actions in a pandemic. Throughout this, one of the best examples of non-disabled allyship has been Gina Martin, who has regularly used her platform to champion these messages. I hope this is something we see more of next year so that disabled people like myself feel less alone. In the meantime, I am here if any disabled folk want a chat if it’s getting them down – it really has been a hell of a lot to take on.
‘Coping’ is complicated
If you had told me before the pandemic that I would be faced with the above, I would have told you there’s no way that I could cope with it – I couldn’t even have fathomed the idea. Throughout my life, or for the second half of it at least, I’ve been told by a long list of people, often repeatedly, that I’m a very strong person. It’s something my dad tells me often when I’m feeling really low – ‘you’ve survived so much, you’re strong, you can do this’ – but I’m not sure I’ve ever entirely believed it. I’ve usually responded to say I’m not strong for keeping on going, there just isn’t another option, not to mention that keeping on going isn’t necessarily a journey of strength – often it’s a lot of crying, comfort eating and scraping through. In my mind, the idea of being strong, resilient and coping was one of being composed and handling things gracefully and it took until this year for me to fully acknowledge that it’s not; that strength and resilience don’t have to be made up of heroic feats or quiet wisdom – it can be scrappy, difficult and messy and still count.
I began to piece this together when my therapist kept telling me repeatedly how well she thought I was coping and how resilient I sound. At first I thought I’d accidentally tricked her into thinking I was ok and wondered how I’d managed it when I felt like such a wreck. It was only as she kept saying it and we began to explore the concept that slowly I understood that what she really meant was that I was finding ways to keep going and that, regardless of how messy it all was, that was something to be celebrated. That actually it was ok to do a lot of crying if I needed to and to hide under my duvet with bad TV all weekend for some escapism, or to let off steam by expressing my frustration at different aspects of this year. All of the things I thought were signs that I wasn’t coping were actually what was helping me to piece my way through it as much as the moments where I was writing, drawing or creating goals to focus on. It wasn’t just ok to cope messily – it was normal.
This year I learned that it’s ok for things to feel messy and to be messy with them too, it’s just another part of being a person. The idea of the stoic hero is a myth. There’s no such thing as perfection when it comes to being human, especially in a crisis, and I think we’d all benefit a lot from acknowledging this more too.
Give your energy to the good in the world ( because yes, it does still exist)
On another one of our phone calls, my therapist said to me “I don’t think you’ll come out of this able to see the world in the same way”. The comment was prompted by me speaking about how disposable I was being made to feel as a vulnerable person in the pandemic. I responded and said that I thought she was right – because I can’t imagine meeting anyone new again without wondering if they would gladly trade my life for their own entertainment. The shock of seeing ableist, dehumanising statements on a regular basis every day, alongside just how many otherwise good people I knew who were acting in a way that risked mine and others’ safety this year, really shook me. I went from a place of having faith in most people and their inherent kindness to realising just how detached our society has become – that even in a global crisis where the stakes are life or death individual want has regularly come first over our communities’ collective need. The feeling of dejection from this began to feel overwhelming, especially as someone who has dedicated so much of my life to helping others. When I told my therapist this, she asked me where that left me, and I surprised myself by quickly coming up with an answer that I hadn’t known was there.
I told her that I needed to stop focusing on the people who weren’t helping (or who were actively causing harm) and to focus my attention on those who were instead. To give my energy to the positive change I am able to control and create and to the people I know I can trust to cherish it, in the hope that together we can make progress. It’s something I am still struggling to integrate and need to work on, but I’m trying my best to give negative voices less airtime in my mind and not to feel like their attitudes make everything completely hopeless. If I focus my energy in the right places then I can move the dial further in the direction I’d like to see it, instead of wasting that energy worrying about those who wouldn’t value or listen to me anyway. We don’t need everyone to be kind for kindness to exist or everyone to be on our side to create the change we want to see. It’s time to be realistically optimistic.
My voice matters
One of the real unexpected joys of my year has been its focus on the impact of personal storytelling – something I wouldn’t have expected twelve months ago. From sharing my own story and experiences in writing and on social media, to working with young people to empower them to tell their own at work, I have never felt more certain that brilliant things can happen when we open up.
Sharing my story and experiences in different ways throughout this year has been so powerful for me – perhaps moreso than in any year before. I’ve shared more than ever before about my experience with M.E and heard from people with and without the condition who’ve learned from my awareness raising posts, I’ve had my words about my experience of being disabled in the pandemic shared thousands of times across the world leading to beautiful connections and uplifting comments, and, in addition to using my voice, I’ve had moments of reading others’ words that have made me feel seen and supported in difficult moments when I’ve needed them as well. Storytelling has the capacity to bring perfect strangers together in community and shows us we’re not alone – something that’s become even more powerful this year.
Being open and honest throughout this challenging year has allowed me to feel like my voice matters, connecting me to brilliant people and enabling me to realise just how many people care about me in the moments where I’ve felt my most alone. I’m so grateful for all it has given me this year and hope to carry that same openness and focus into 2021.
In 2021, I would like to focus on the following themes which I hope will carry me through whatever this new year has to hold…
A core goal of mine in the year to come is to develop my new work-in-progress, finishing the first draft and making a start, if I can, on the second. However, I want to branch out in my creativity beyond one long form project in 2021. This year I’d like to broaden my scope creatively with more work outside of novels, focusing on submissions and publishing a little more again, from zines and illustrations to essays or shorter works. After realising the importance of creative community this year, I would really like to feel more in touch with the writing community again, which in recent years I’ve stepped back from with laser vision on lengthy drafts.
Following on from “create”, this year I’ve noticed a vast amount of the meaningful connection I’ve found has happened as a result of my creative projects and online advocacy. Building on this, in 2021 I’d like to focus more energy on trying to develop those connections in a more thoughtful way, to continue to try and counter loneliness and foster that sense of belonging. I’m not sure what this looks like yet but I’m excited to figure it out.
Finally, I want to allow myself the space to keep on growing and to become more confident in building the life and future that I want. This year has given me food for thought when it comes to what I want, and so in 2021 I’d like to make progress in going after it and believing in myself more along the way.