Looking back at this last year, it’s hard to believe how much has changed since I wrote my review of 2021. It has been a year of significant change and challenge, but also one that’s ending with more hope than I have felt on the last few New Year’s Eves.
As always with my end of year reviews, I’m going to look at more than just what went well – reflecting on the challenges and the lessons I’ve learned is just as important to me as celebrating my strengths. I’ll also round off with my aspirations for the next year – which in recent years have taken the form of three words I want to embody.
Before I dig into 2022, I’ll remind you of the ones I set myself this time last year: Invest (in myself, my happiness and my boundaries), Grow (as a person/writer/artist) and Dare (to be braver, bolder and more open to change). Let’s see how well I did at living up to them.
One of the greatest strengths of my year has to be the joy and purpose I find in creativity. At the heart of that this year has been my novel-in-progress, which I completed both the second and third drafts of in the spring and early summer, before beginning a fourth draft this December. Working on this book, which centres a chronically ill protagonist, has been a source of real pride and fulfilment (as well as the frustration, self-doubt and imposter syndrome that tend to come along with creative projects). I’m so excited to carry it with me into 2023.
In addition to the novel, I’ve also had fun with creative experimentation this year – which I always think feeds into improving and evolving my existing creative practice – including learning to crochet (badly), teaching myself the basics of lino printing (so messy, so fun) and even dipping my toe into the waters of playwriting when I was awarded a place on a course for disabled writers new to the craft.
I’ve also managed to sneak in a couple of publication credits, although my submissions spreadsheet has been much quieter overall. I was delighted to have my biography and illustration of Angela Carter included in the brilliant Illustrated Women in History zine in the spring – as well as having my illustration of Angela and another of Jeanette Winterson featured in an exhibition for Women’s History Month. My publication list as a poet also went up by one with my poem “Structural Integrity” being featured in Issue 4 of Untitled: Voices in April.
Outside of my creative work, this year was all about making big (scary but exciting) changes. After over a decade of calling London my home, I decided it was time to try a fresh start somewhere new and moved to Edinburgh in August.
This decision is one I had been considering for a while but which I had put on pause in the last couple of years (for obvious reasons). Much as I love London, and I’m not sure I will ever stop feeling like a Londoner, the life I want for myself was never going to be possible there. I wanted to move somewhere that still had so many of the brilliant parts of London – especially a bustling arts scene – but without the same drawbacks of its size, incessant fast pace and increasingly impossible cost.
Once I decided to make a move, Edinburgh felt like the obvious choice and the move was solidified by me securing a place on something I have also been dreaming about for several years – a Master’s in Creative Writing. I began studying at the University of Edinburgh in September and can’t quite believe I’m already a semester in. At times it has been incredibly overwhelming to change so much and to do it by myself (more on that later) but I’m really proud of myself for taking the leap and making it happen. After two years of remaining still, I think my heart needed to make a big move.
My city and student status aren’t the only changes I made this summer, however. I also moved on from YoungMinds after two and a half years in July, moving back to the first charity I ever worked for – Young Lives vs Cancer – to cover their Voice and Engagement Manager role until mid April. It has been so lovely to come back to a charity I enjoyed working for so much and which gave me the opportunities to grow the career that I have now (and it also works perfectly alongside my study!) I’ve been working on a few exciting projects, shaping up the organisation’s approach to meaningfully engaging young people and their families in the development of its work, supporting the design of a new project for young people with lived experience to become campaigners, as well as leading the development of the charity’s first ever children’s voice plan.
Another shift in my charity work has been making the decision to stand down as a trustee for Action for M.E after 4 years on the board. I have loved being a part of the organisation, but as I decided to pour more of my energy into study it made sense to step back from this commitment at the end of my term. I’m still involved on the Policy and Communications Sub-Committee, though, sharing my experience both as a patient and an expert in Children and Young People’s Voice.
And finally, it would feel wrong not to add Sima as one of the strengths of my year. From beginning the year burnt out, through all of the challenges and the intensity of change, he has been a constant, positive force in my life and I’m grateful for him every day.
This year has not been a straightforward one, despite the progress and achievements I have made. It has certainly felt at times as though my decision to move and go back to university has, to many people, been seen as a signal that I’m willing to move on from covid, and with that an implication that my concerns about the pandemic are an issue of my mindset and not they reality we’re all still living in. Adjusting to the ever-changing puzzle that is navigating a deadly virus no one wants to deal with anymore but which still poses a significant threat to all our lives (and especially to vulnerable people’s, like mine) has been… well, exhausting.
This year, as it became increasingly clear that covid protections were a thing of the past and the new normal would have to involve living alongside covid in the long term, I did begin to redraw my boundaries around it for the sake of my mental health. Having shielded alone from March 2020 up until the summer of this year, I couldn’t keep shutting myself away with no end in sight. So, I decided to move to Scotland, to go to university in person, to spend more time out and about, to try to feel more connected. At this point, for me, a certain amount of risk is necessary for my wellbeing – like everyone, I need social contact and connection. However, that doesn’t mean that I’m dropping it all. It would be so easy for society to take more care to lower the risk of covid for all of us.
Throughout this year and into the next I will continue to mask on public transport, in shops, in medical settings and in spaces where there are crowds and wearing a mask won’t inhibit the experience (eg cinemas, theatres and galleries). I will continue to test whenever I have symptoms, or if I’m meeting other vulnerable folk. It would be so easy for all of us to take these sorts of steps, and it’s hard to always be the only person in a mask everywhere I go. It’s hard not to carry that feeling of being “other” with me as I spend more time in the world again, seeing even more clearly the lack of ongoing awareness and community care that continues to harm vulnerable people. Connection to others has never been more needed and yet feeling able to connect feels more challenging than ever. I’ll be carrying that challenge into 2023 as I continue trying to navigate these ongoing challenges and questions, where what’s good for my mental health might not be the right choice for my body.
Alongside this, one of the greatest challenges I’ve faced in the latter half of 2022 has been dealing with the other side of change; away from the bright and shiny parts of making big moves and starting new adventures, change can also be incredibly draining and unsettling. It has been a huge shock to my system to leave my home city of eleven years and to feel brand new and displaced so far away. I didn’t expect the homesickness and doubt I’ve felt, despite the amount of thought and care I’ve put into this decision. From the outside, it can look as though the sort of move I’ve made is pure excitement but it has absolutely come with a lot of questions and anxiety which I’m still working through now.
The change in the demands of my time and energy now that I’m both working and studying has also been an intense struggle for both my body and my mind, and has added to the challenge of adjusting. Through much of October and early November I struggled a lot with the ongoing battle so many of us with chronic illnesses face – the disconnect between what we want to achieve and what our bodies will allow us to do. It’s hard to know you could do so much more and do it all better if your body would co-operate and I’ve had to do a lot of work to shift my expectations of myself, which has brought up some challenging feelings. I’ve managed to find balance over the last few months, but I’ve had to adapt a lot and be incredibly resilient to make it through. Essentially, what I’m saying is that change is really hard even when those changes are positive ones. This year has involved some incredible steps forward in my life but they’ve not been easy to take and I think it’s important to be honest about that.
This year, compared to previous ones, has felt harder to draw clear lessons from, but the one theme that feels clear to me is that I’m braver than I give myself credit for a lot of the time. So often I’m really quick to bat away compliments or successes, to believe that what I’ve done is something that anyone could or would have chosen or been able to do, but this year – in particular in this last quarter – I have been told often how brave my choices have been this year and, now I’m looking back, I can see it. I used to think that bravery couldn’t include doubt or anxiety but now I think that bravery is feeling all of that doubt and facing all of those fears and trusting yourself to keep going anyway.
Looking back at the challenges I’ve faced this year, and how difficult so much of this year has been, to be able to reach the end of it now and to have made it through, to have chosen myself and to have kept on going is something I can be proud of. Over the last month or so I have been thinking a lot about the discomfort of growth and of change, and I’ve been learning to accept it and to trust that I will find my way out of the other side. I genuinely believe that next year will be all the better for it. I’m taking that belief, and that patience, with me into the new year.
In moments of doubt, I come back again and again to this quote from Jeanette Winterson: “When we make a change, it’s so easy to interpret our unsettledness as unhappiness, and our unhappiness as a result of having made the wrong decision. Our mental and emotional states fluctuate madly when we make big changes in our lives, and some days we could tight-rope across Manhattan, and other days we are too weary to clean our teeth. This is normal. This is natural. This is change.”
And so, where do I want this year to take me as we roll into the next? My words for 2023 are:
Build – creating my new life in Edinburgh through building connections, community and belonging
Explore – new opportunities in my career and creativity
Pursue – my goals and dreams (in particular, my Master’s and my publishing goals)
I’m excited to see where these guiding words lead me but, for now, I’m wishing you a happy new year and farewell to 2022.
Another difficult year is coming to an end and, like most of us, it looked nothing like I’d thought or hoped it might. Usually I love new year’s eve, not in the sense of going out and celebrating – in that respect I think it’s overrated – but as a reflective person I like the clean slate, new term, fresh start feel of it. This year that feeling is lacking, though – it feels like hope is in short supply, but I’m hoping I can still reflect in a way that’s helpful (even if the only person who reads this is me) and look ahead in a way that gives some sense of promise.
If you’ve read any of my annual review blogs before, you’ll know I like to look at the year from every angle – what I’m proud of, what I struggled with and what I learned. It’s also around now that I offer a reminder of which words I chose to set as a direction for my 2021, before setting new ones at the end of this post.
A year ago today I sat down and said that in 2021 I wanted to: create (including submitting more writing), connect (in particular finding creative ways of connecting in isolation), and grow (confidently moving towards the life and future I want). Let’s see how I did, shall we?
This year I was lucky enough to extend my project at YoungMinds, and so continued running my young storytellers’ programme, which has gone from strength to strength. Highlights from the year include:
Recruiting and training 10 more young people with diverse stories and experiences
Organising for 2 young people to speak to the Prime Minister in March
Supporting and coordinating the participation of 1 young person in this year’s Children in Need documentary about the youth mental health crisis
Enabling young people to share their views and experiences with advisory groups for organisations such as ITV and Headspace
Developing my understanding of storytelling for social change and trauma informed practice
In the summer, I was also lucky enough to take on a couple of fun freelance projects – designing and running a workshop for The Literary Consultancy on zine making and self-love, and creating illustrated posters for a climate change exhibition.
This has been perhaps the most wobbly year yet for my creativity, with the weight of the pandemic and its impact on my life causing a pretty major creative block – predominantly in my writing – for about three quarters of the year. Creative outlets are part of what make me feel like myself, and writing is a core part of that, so it was tough to not feel connected to it when I needed it the most.
So, a lot of this year was spent trying to figure out how to reignite that spark. Something that often helps me when I feel stuck with my writing is to play with other things, so over the spring and summer months I experimented with various mediums, including drawing, collage, macrame, embroidery, blackout poetry, and so on. It may not have been a quick fix, but managing to keep on creating in one form or another is something I’m grateful for.
Ultimately, the solution to my writers’ block came towards the end of August, when I took some time off work and decided to design and run my own personalised at-home writing retreat. I themed each day around either a specific writing project or a type of writing I wanted to play with. I found things to read, learn from and exercises to do and committed myself to spending at least a few hours a day following my plans.
I wasn’t sure if it would be helpful, but figured it was worth a try, and thankfully it made a massive difference. I managed to clear my head, resolve some road blocks in my work in progress and have fun with writing again. I spent the following few months focused on the first draft of my second book, which I finished writing just yesterday. I’m proud of myself for not giving up, even though it was really tough to work through.
Another area of writing I developed this year, after dipping my toe back in the waters in 2020, was writing poetry. It’s a form I lost confidence in and always felt the most vulnerable sharing, but this year I decided to push through that pesky self-doubt. Taking part in opportunities like Red Sky Sessions from Apples and Snakes made a big difference to my confidence and focus, topped off by having a poem published in a dream publication of mine in November. Popshot Quarterly chose to run my poem “My Sadness Lives on the Internet” in their “uncensored” issue and I couldn’t be more thrilled both with how it turned out and being able to pick up a magazine my writing was in from a local high street shop for the first time.
All in all, whilst I didn’t submit huge amounts this year because my struggles with writing, I still managed far more than in recent years, submitting to 12 publications, and applying for 5 development programmes. I’m still waiting to hear on quite a few outcomes, but I was proud to have had another poem as well as an essay longlisted for publication this year too and for believing in myself enough to try. I hope I can keep this momentum up next year.
My final creative win of the year was starting a newsletter – Curiously Imperfect. It was an idea that my last year in review blog prompted – as I got thinking about how many lessons I learn from the messy parts of life, despite being a perfectionist who likes planning. I decided to write more about that each month and ironically I think my carefully crafted content plan – and life’s recurrent habit of getting in the way of letting me follow it – taught me a lot about letting go. I’ve not held myself to being perfect with it, only writing it in months where I have the energy or am in the right headspace and honestly, I’m proud of myself for that. Although I’m possibly a tiny bit more proud of the fact that, back in April, my newsletter was recommended on national radio in Ireland, alongside my long time writing deity Marian Keyes. That alone (in my book, at least) means 2021 couldn’t have been a total wash out.
2021 saw some pretty huge life changes for me – primarily moving flat (because one year isolating in a tiny studio is one too many) and then, as a result, adopting a furry best friend. As a life-long dog person, I can’t tell you how much I did not see becoming a cat lady in my future but I can honestly say it’s the best decision I made this year. I have a constant pal to talk to, sing at, cuddle and to shamelessly share photos of in group chats when the rest of my life is isolation offers me very little to say. Truly, though, he’s single pawedly rescued my wellbeing as this year has gone on.
(Still) going it alone
Last year I wrote about the difficulty of going through the pandemic on my own and had hoped that this year that might change, but… sadly not. I have spent the vast majority of this year completely isolated, mostly only leaving the house for healthcare appointments. Not enough people seem to realise (or, at this point, care) that so many disabled and vulnerable people have yet another full year of lockdown style conditions under our belts, or that the government’s reckless and anti-scientific policies around the pandemic (combined with society’s happiness to look the other way) have kept us here.
I’m trying the best I can to remain resilient, to do what I need to protect myself, but it gets increasingly hard when you’ve only been ok to see friends one time in an entire year and haven’t seen your only parent without a mask in over 5 months. When your world is reduced to the space of your flat. When the world is happy to go on without you and to start removing a lot of the access that had been helping the you to stay and feel connected now they don’t need it anymore. I wish that finding a way to live with the pandemic which didn’t erase or harm disabled people was something I could feel confident would come in 2022.
Ableism en masse (again)
The last point leads me onto my second. I’ll admit, I hadn’t thought that this year could be worse for ableism than the last but somehow society achieved it. The embrace of “freedom day” when it put the vulnerable at increased risk, as the government silently removed all the protections of shielding. The cry that high cases numbers are fine when even a mild case for many could cause severe complications if not death. The idea that a “mild” variant is ok to spread when the previous point still stands. The idea that it’s inevitable, so maybe let’s just get on with it. The continued chorus of “the vulnerable can just stay home so we can get back to our lives”.
It’s exhausting to live with a chronic illness, let alone to navigate a pandemic whilst sick and vulnerable, without society making it so much harder and repeatedly reducing the value of vulnerable lives. My trust in the inherent goodness of people has shrunk even further this year, as I’ve sat at home wondering why my life, my freedom and the safety of people I love don’t seem to matter to anyone at all. I miss my life so desperately but other people’s actions are making it impossible for me to safely get it back. I wish more non-disabled people would advocate for us and act with us in mind to bring this nightmare closer to an end next year.
And finally, another appropriate transition point… burn out. I’ve been off work since the beginning of December because, after so long trying to hold myself together in isolation, to care for my physical and mental health on my own, to try and stay hopeful that things could get better… I hit a wall.
Omicron emerged just as I was beginning to think I might win some freedom back – that my booster would protect me enough against Delta to be able to live a bit again. That hope vanished before I’d even hit the two week mark post jab, and I really struggled with the loss of it. I was too drained, too angry, too hurt to keep on going and pretending I was ok. Watching the world around me behaving in ways that harmed me whilst acting like it was normal.
I’m not sure I feel anywhere close to myself again yet, but I’m relieved my work were so supportive of me needing to tap out. It was a lesson in not letting myself push on too far without help – which I have been doing for a long while now. I need to figure out how to start coming back from this but it does feel more achievable knowing I have the right help on call.
Find community where you can
This year, more than any other in my life so far, having community support has been essential. It’s been increasingly hard to find through the year, as my life feels more and more distant to the one most other people are living, but I’m grateful to have found it online in the disabled community again.
Having other people who are going through the same situation as me, with all the same fears and many of the same complexities, has helped me to not feel entirely alone. It has helped me to feel cared for, even though the lack of care from beyond those living through the same experience has been disheartening. I’m grateful for the closer bonds I’ve formed this year which have helped me to keep going. It’s proof that community is always out there if you need it, you may just have to look a little harder before you realise it’s there.
It’s ok to prioritise myself
I’ll admit it – I’m a bit of a people pleaser. I’ve always been headstrong and focused, held firm in my own beliefs and values, followed the path that’s right for me… but I’ve also been someone who wants everyone else to be ok so much that I’ve often focused on that at my own expense. More comfortable protecting the peace than I was my happiness and peace of mind.
One thing about going through a global crisis on your own is that you learn the importance of responsibility to yourself. This year I’ve finally begun to think about what I want (and need) and to try to honour that more instead of pushing through when I’m not well enough, trying to hide it when I’m struggling, smiling through events or interactions that might please others but ultimately hurt me. The world isn’t going to stop turning if I step back, say no or ask for help a little more. This year I’ve been learning to choose myself because, so much of the time right now at least, I’m all I’ve got.
And finally, reflecting on all of the above, I’ve picked three new aspirational words that I want to guide me in 2022 whatever the year ahead holds:
Invest – in myself, my boundaries and my happiness
Grow – as a person, writer and artist
Dare – be braver, bolder and more open to change
I’ll see you here in a year’s time to tell you how it goes.
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.
The last three months for me have felt perhaps like the longest of the year, despite the fleeting shortness of the days. Looking back on October and November, now nearing the end of December, to write this post feels almost dizzying. So much of what has happened in that time seems like a lifetime ago instead of weeks. It seems fitting though, I suppose, that the tail end of 2020 would feel overwhelmingly drawn out.
Here is my round up of the final quarter of this most peculiar and trying year.
October was possibly my busiest month when it came to both work and volunteering. World Mental Health Day drew a huge amount of attention and led to a flurry of interviews across radio and TV for the young people on my programme. It was a huge source of pride to be able to offer such a platform to so many brilliant young Activists, and to see them make the most of the opportunities to share their stories, and the popularity of our programme has only increased since.
It was also a month where I took on new responsibilities as a trustee, joining the Action for M.E Communications, Influencing and Participation sub-committee, as well as joining a working group for our new strategy. Getting more involved in specific areas of work, and particularly those I have a keen interest in, has been massively rewarding – especially during the pandemic, where it has been easier to feel a little lost or purposeless at times.
Outside of work and volunteering, I filled much of my free time accessing online writing events. Being able to engage with so many as the world has become increasingly digital has been a huge source of joy and inspiration, as well as a necessary distraction. I hope more than anything that some form of digital access remains, even when real life events are able to restart – this is the first time in years I have been able to do so much. In normal circumstances, I would never be well enough to attend so many events in person on top of work but having flexible access to events, which I can watch whilst resting from my bed, has been wonderful. October was an especially busy month for events too, from the Royal Society of Literature’s event on ‘Writing in Isolation’ (which got me thinking as much about maintaining wellbeing in isolation as it did creativity), to Manchester Literary Festival and the Comma Press Industry Conference, among others.
As for writing itself, October proved quite productive (in the scheme of my year, at least) – as I worked on developing a plan for the third draft of my first book, before plotting and beginning writing the first draft of my second. Working on a new writing project has felt like a necessary breath of fresh air, and I’m incredibly excited about it; it’s an idea that has been simmering with me for well over a year and one I shared at the Experimental! retreat back in September. The encouragement I received then to pursue the idea made a massive difference in spurring me on to make time for it now.
For all my productivity, however, I did find October a real struggle when it came to isolation and loneliness, after so long almost entirely alone. These feelings were worsened still by the change in weather exacerbating my symptoms, making getting through the day that extra bit harder. It was a sweet relief to receive kind support, from spending a weekend with two of my closest friends to several others sending books or postcards to cheer me up. The kindness of the people in my life this year really has made all the difference.
November came charging in with an almost unbelievable amount of hope, so much so it felt hard to believe. From Joe Biden winning the US election instead of Trump to positive vaccine news, it felt for many of us like maybe the future would not be total darkness afterall. For the M.E community that sense of hopefulness went even further, with NICE publishing a long awaited draft guideline for the diagnosis and treatment of M.E.
The result felt almost miraculous, fully removing the longstanding and harmful concept that M.E could be treated with Graded Exercise Therapy and CBT. Until now, the NHS has – despite both NHS England and the World Health Organisation classifying the condition as neurological – treated M.E as a psychological illness, influenced by a flawed research study. It was accepted as fact that M.E was caused by “false illness beliefs” in patients, which psychologists argued led to inactivity and deconditioning, which was the cause of any physical complaint – not an actual illness. Despite mounting research showing biological differences and many patient surveys showing that this approach was far more likely to do damage than drive improvement, this myth about M.E persisted… until now. Not only does the new draft guideline reject the psycho-social approach, it also underlines explicitly the damage that stigma, prejudice and disbelief has caused M.E patients. It was more than I would ever have allowed myself to hope for.
Of course, there is a long way to go still – we need more research in order to understand what effective treatment and support is needed, mass education to share the changes if this approach is confirmed to go ahead and the final guideline won’t be published until April, with adaptations based on feedback from stakeholders – but it was a monumental moment of progress. After 15 years of illness, I can finally really believe that maybe, in my lifetime, things will change for people with M.E and my life and health might have a chance of getting better.
In addition to the above, I found hope in another unexpected place in early November. As a new lockdown was announced, I found myself increasingly hurt and frustrated at the narrative that kept cropping up around it in almost every sphere of my life. The tone of conversation was grim, with everyone despairing at such a “bleak addition” to a dark and difficult winter – with no recognition at all that for many vulnerable and disabled people, such as myself, the lockdown conditions had never ended and the easing of restrictions for others had only contributed to making our experience of the pandemic worse.
I got so overwhelmed by the feeling of my experience being erased that I took to Twitter and wrote a lengthy thread on the topic, sharing my frustration at non-disabled people’s attitudes, behaviour and lack of self-awareness. I thought it would be a scream into the void, a release to make myself feel better, as well as maybe making a few other disabled or vulnerable people feel seen, and perhaps encouraging one or two non disabled people to think or act differently as well. What happened next was completely unexpected.
It wasn’t long before my notifications were blowing up so rapidly I couldn’t keep on top of them. I sat glued to my phone, stunned, as I saw the numbers of likes and retweets rolling up in real time and tried to respond or acknowledge everyone who took the time to quote tweet, reply or DM. It took several days for it to quieten down – almost 3,000 retweets and over 9,000 likes later on the first tweet alone. Looking at the reach and engagement statistics I was stunned, especially given every single interaction on Twitter was positive. I went from feeling invisible and ignored, to feeling valued and seen – knowing that I wasn’t alone in my experiences and that my words had meant so much to people around the world. It was exactly what I needed, when I needed it, and I have never been more grateful for the beautiful community that exists among disabled people. I even ended up being invited to run a workshop with a young theatre company as a result, who were working on a project all about invisible disabilities; spending an hour with them to tell my story and help them to consider how they might want to tell their own was an absolute joy and honour. Through both my work and my life, this year has shown me more than ever the importance of personal storytelling.
In the quieter moments of my month, I kept up my online event attendance, from a workshop on kindness, forgiveness and writing with Free Word, to collaborative writing sessions with both Write Like a Grrrl and my fellow writers from the Experimental! retreat. Coming together in community with other writers has been so important for me throughout this year, and really helped me to keep my both word count and my confidence creeping upwards in November.
After a stretch of losing momentum with art, I also came back to drawing regularly in November – trying to replace my 2020 doom scrolling habit with a much more productive and relaxing way of occupying my restless hands. I have been enjoying turning some of my old drawings and paintings into digital versions on my iPad, as well as playing with creating illustrations from photos.
December has been relatively quiet this year, which must be a first or at the very least a novel occasion for the festive season. The funding for my programme at YoungMinds came to an end this month, and so my final few weeks of work were spent gathering feedback from young people and reflecting on our progress for our final report. Personally, I think it was the best way to end my working year, as it gave me a chance to really stop and acknowledge how hard I’ve worked and how much I’ve achieved. I’ve spent so much of the year on survival mode I don’t think I’ve actually given myself enough credit or taken the time to acknowledge my successes as much as I’ve focused on my challenges. Setting up a brand new programme remotely and turning it into a success, both for the organisation and the young people involved, was no small feat and I’m genuinely proud of myself. I’m so glad my contract has been extended, so I’ll be back in January to keep making this wonderful little project even better.
Life outside of work has been quiet too – the usual pre-Christmas festivities and build up just doesn’t carry well onto Zoom – but I’ve been feeling so burnt out I don’t think that’s necessarily been a bad thing. I’ve focused a lot more time on rest but I’ve also written where I could, attended a workshop or two, and continued drawing and trying out collage where I’ve had the energy to.
And finally, of course, was Christmas. I was fortunate enough that my festive plan – to spend some time with my sister (who also lives alone, isolated in advance and drove me to and fro) – was not disrupted by changing restrictions, but it still felt weird and a little sad all the same. I’m grateful to have been able to have as nice a Christmas as possible but I am sort of glad it’s over, if I’m honest. The relentless focus and build up seemed to make December all the more stressful, and I hope we can now look forward with a little more clarity.
That forward look for me involves heading back home to London tomorrow for some pre-new-year’s reflection and two more weeks off work, in which I hope to rest, recharge and focus on my creativity. I’ve never needed a break like this more and hope it will equip me to bring the best version of myself I can into 2021, regardless of what it has in store.
For now though, I’m aiming to come back to the blog in the next few days and write my annual “year in review” post, though I’m not entirely sure what form that will take. Prepare yourself for what I imagine will be some some lengthy existential waffling…
Somehow it’s already the beginning of October and I’m honestly not sure how that happened. The weather seems to have turned very quickly, to the point where seeing the word “summer” in my blog header feels like it cannot possibly be right.
This has to have been the strangest summer of my lifetime, probably because it didn’t feel like summer to me at all. I spent almost the entire summer indoors alone and I missed the joy of airing my summer wardrobe, eating ice cream by the river or having drinks in gardens and on roof terraces, even having to wash my feet almost constantly from traipsing all over London in sandles. I ended up envious of my former self, watching memories pop up in Google Photos of past holidays across Europe, trips across the UK and constantly clasping iced lattes in my hand.
Even so, I tried my best to find ways to give the summer months a sense of purpose and enjoyment despite all of the many ways I wished my summer had looked instead. Here’s my round up of the shift from summer to autumn.
One of the most important ways I’ve been giving myself focus and a sense of forward motion this year has been through writing. Between working on my novel and starting a poetry course with Write Like a Grrrl, in July I was able to feel a sense of progress even though my daily setting never changed.
Reinstating my writing sticker chart and having a weekly workshop to look forward to helped me to feel proud of myself, which is a feeling that can be in short supply right now.
July was also a month where I was able to feel a little more in control of my health. In addition to returning to seeing my osteopath after four months without access to treatment, I started getting out for occasional walks in the sunshine when I felt well (and brave) enough, and when it felt more likely to be quiet outside. I’ve still not been out much – it just all feels so risky, especially when witnessing others’ lack of caution – but on a few occasions I was able to enjoy being in nature and moving my body for a while which was a welcome relief.
In a running theme of my restricted year, I continued to use art to manage my wellbeing in July too. Drawing is one of the only times I’m able to quiet my mind, which is so important in times where I’ve been experiencing more stress and anxiety than ever.
July was also a brilliant month for me at work, with my project really taking off. It was such a pleasure to support young people to share their lived experience of mental health problems in print, on the radio and on TV. Watching young people flourish and make a difference, using their training and support so confidently, made me so proud.
Art continued to be a strong theme in August, starting with participating in Charly Clements’ “Fun with Faces” challenge on Instagram. Each day for a week, there was a fresh set of prompts for you to interpret in your own way. As someone who loves drawing portraits, and is looking to develop digital art skills, it felt like a great focus for me.
I also spent one long weekend in August playing with collage, a medium I’ve rarely used outside of some classes at House of Illustration and the vision board I made earlier in the year. It’s an art form I want to experiment with more in the future for sure, as it require a different eye and skillset to the sorts of art I usually create. Similarly to drawing, it takes you outside of yourself and can be a great distraction, figuring out which images to use, whether to use words – and, if so, how – and trying out different compositions on the page. If nothing else, cutting up old magazines is very cathartic too.
The most momentous moment of August, however, had nothing to do with art. Instead, it came towards the end of the month in the form of a writing milestone, when I finally finished the second draft of my novel. I still can’t entirely believe how much I’ve achieved with this book, and also how long this new draft is. I feel so proud of myself for remaining committed to this project and for finding a way back into it this summer after struggling so much with writing at the beginning of the year. It is now in the hands of some trusted writer friends, who can offer me outside perspective on what to do to improve it next.
The final highlights of August were finally managing to see some friends for the first time since March. From an afternoon in the park at Alexandra Palace to a weekend staying with friends (who isolated in advance and drove me to and fro to keep me safe), I feel so lucky to have such wonderful people in my life. There is something about seeing people that makes the immediate experience of being alone again harder, but it’s worth it for the joy and connection of those moments. Living through this year almost entirely alone, I really needed those experiences to help me to keep going the rest of the time.
The best thing that happened to me across all of the last three months was being accepted as one of 14 D/deaf and disabled writers for a week long digital writing retreat, run by Spread the Word and curated by poet Jamie Hale.
There was so much about the experience that was incredibly powerful for me: being selected out of a large number of writers gave me such a sense of validation and confidence that the hard work I put into my writing is paying off; having the opportunity to learn from and discover a wide array of incredible disabled writers; the chance to learn from industry about how to stand out and get published; but more than anything else, a full week spent in a purely disabled space that was accepting and affirming in a way I’ve never experienced before. I honestly can’t praise it enough.
Something I’ve struggled with across the pandemic – and in the first two days of the retreat as well – is feeling confident to speak up and put myself out there in digital spaces. Where, in real life, I am often in my element in workshop settings, when those experiences are taken online somehow my childhood classroom persona of shyness and anxiety reappears. So, imagine my surprise when by day three I was contributing to discussions actively, by day four I was reading work I’d just written to the whole group for feedback, and by the final day I had the confidence to read a whole essay – I was even excited to do it.
I could not be more grateful for the experience and I know that the time spent in that group will have a profound impact on my confidence and writing career moving forward. I even got the affirmation I needed to commit to beginning writing my second novel soon, after resounding support when I shared the main character to the group. It was truly one of the best experiences I have had as a writer.
Beyond the retreat, I was inspired to book onto more writing development opportunities where I could, using what I had learned and my awareness of the gaps in my work in progress after reading the second draft back. As a result, last weekend I took part in several workshops of WriteMentor’s WOWCon – a conference for writers of children’s and young adult fiction. It was a brilliant event that gave me even more fire and food for thought with my first novel. Now I just need to figure out what to do first – the third draft of book one or the first of book two!
Outside of writing, September was relatively quiet – a mix of work, digital plans with friends and health admin broken up briefly for a weekend of dog sitting with one of my favourite local pups, Finch.
As we move into the final quarter of this year, with difficult times undoubtedly ahead, I’m hoping I can continue the positive and creative focus I’ve been cultivating over the summer to make the darker days ahead of me feel at least a little brighter.
Sitting down to write this, it feels like I’m settling in to do an annual review post not a round up of a single quarter. Who signed off on 2020 being this much for this long, and why was that allowed?
Somehow not much at all seems to have happened (hey, lockdown) and yet there’s still quite a lot to say. Here are my reflections on the shift from spring to summer.
Thinking back to a time where lockdown still felt like a bit of a novelty is a funny one, isn’t it? Nowadays I struggle to picture what life was like outside it. April was a time of adjustment, trying to figure out how to cope with being on my own 24/7, not leaving the four walls of my little flat, whilst still keeping on top of work and life as normal. I started a new contract at the beginning of April too, signing up to work with YoungMinds part time until the end of this year. I’m thrilled to be able to stay on, designing and delivering a brand new youth engagement project, training and supporting young people with lived experience of mental health problems to tell their story to effect change.
The strange transition period of early April was made a little sweeter with a mix of baking (why yes, I am a cliche) and sweet treats arriving in the post, to sustain what felt like endless, unsettled days.
It wasn’t all sweetness and light, though, as a clinically vulnerable person trying to manage this situation on my own. All of a sudden I was unable to access my regular treatments to manage my conditions, reckoning with a new pharmacy to deliver my medication to my door (when my GP surgery approve the requests, that is, and that itself has been 50/50), trying desperately to get some sort of food delivery sorted (whilst watching vast swathes of healthy people take slots for “convenience”, readily letting disabled people who couldn’t go out remain without sustenance; forced to spend eye watering amounts on a local alternative that delivered my food to an entirely different house), too afraid to go for walks because of the risk from other people and trying not to panic at the feeling of my health getting gradually worse.
It’s fair to say that seeing able bodied people write their takes on being isolated after just a few weeks indoors – with their health, the most accessibility that has ever existed and daily exercise – was grating for many of us whose lives have looked much like this for a long time before and in many ways, under lockdown, have seen them get harder or worse. My initial optimism for how I’d cope, and how chronic illness had prepared me, was short lived.
It has been difficult seeing disabled people so often left out of the conversation, especially those of us who are young and disabled – an intersection the government and the media seem to forget exists. The weight of dealing with it all – especially alone – has been a lot these past few months.
One of the key ways I tried to refocus and feel better about it all – outside of cosy pyjamas and endless Netflix binges, continued to be through creative outlets. I spent hours on end using my iPad Pro to keep developing my digital art skills, and leaning into the meditative process of drawing and self-expression.
Playing with colour and some of the skills I learned way back when at House of Illustration in January/February offered me a positive distraction when it all began to feel too much.
I also used one weekend in April to create art offline too, making a new zine – my first in a long time. There is something about creating by hand that is very soothing and rewarding, and it felt nice to focus on and finish a project at a time where my brain has felt so scattered.
The resulting zine was something of a self-love workbook, with illustrations, quotes and reflective exercises. I’m selling them in my shop with a portion of the fee going towards Action for M.E to support their crisis service through the pandemic. If you’d like to buy a copy you can get onehere.
One of the best things about May was that my project at work really took off and I so appreciated the positive focus and structure it gave me. As well as finalising the recruitment of young people for the project, May involved running a digital training programme for them, the bulk of which I designed, and getting to know the young activists and how to support them best. I feel so lucky to be able to do this work and to have something so important and impactful to focus on right now.
Another key focus in May was the fact that it was M.E Awareness Month. I decided to take on the daily post challenge from Spoonie Village to raise awareness (and keep busy). Each day had a prompt and for the most part I used my iPad to create a response, although later on I diversified a little including an attempt at a science lesson via my instagram stories about the complexities of rest.
I didn’t manage to post every single day but I did do catch ups when I had had to take days off. I can get really nervous about sharing so much about my health on social media, in case people react badly, but the response I received was really powerful. I was touched to hear from other people with chronic illnesses who saw themselves reflected in what I had to say, and also messages from able bodied people thanking me for helping them to understand. If you are interested in my posts, they are all saved in a highlight on myinstagram, or you can find me on @lucy.goodwill.
Outside of my M.E.A.M creations, I continued to lean heavily on digital drawing as we went through May, focusing on increasingly colourful portraits in an attempt to brighten up my mood.
Sharing my art was something that helped me to feel connected before the pandemic, when I was having to spend so much time isolated because of my disability, so it has been comforting to continue to have that to lean on at this time.
I turned 31 in June in very unspectacular fashion, so much so that there isn’t much to say about it, really.
I took the week off around it to try to rest and recharge, as I realised I hadn’t taken any time off work in 2020. My dad sent me a flowers and a delicious cake (which formulated 50% of my meals for days after), I got lovely messages from friends, relaxed and watched TV but I also spent a lot of the day thinking about the Black Lives Matter movement.
I took some actions online, wrote to my MP, ordered some books to better educate myself and began making lists of things to watch. I always get reflective on my birthday, so I guess this year, on the day itself at least, I opened up that reflective space to consider what I can do to help achieve much needed change and justice.
Later in the week, my reflection continued and of course I used creativity to channel it. I got out stacks of old magazines and began cutting out pages and images for collage. As stress relievers go, it turns out collaging is great.
After a few days of material gathering, I got out a big bit of card and began picking out the words and images that I felt spoke to the future I’d like to create for myself. Yes, at the grand age of 31, I gave into the urge to create a vision board.
At first, I thought it might sound and look incredibly naff, but I think it actually might be the best thing I’ve done in lockdown. I allowed myself to create a vision unrestricted by the constraints of the pandemic and to allow myself to really think about what I want. In a way, the pandemic has crystallised some of those ideas for me, highlighting what matters the most in my life and also what is missing.
The best thing about this exercise, was that at the end I made myself a set of themed actions I can take now, and for as long as I need to live my life in restricted circumstances, that will help me to make this vision of reality. It has given me a sense of control back and created a tiny window for hope.
My creative streak continued into the second week of the month, but in an outward facing fashion. My writing group and I had been due to go to GrrrlCon – a three day writing extravaganza for womxn and non-binary people – in June but of course could not. Instead of scratching the dates entirely from our diaries, however, we decided to run our own one day, digital version. I ran a workshop on making mini zines, my friend Vici ran a workshop on creating blackout poetry, we had sessions for reading extracts or poems as well as writing sprints, with a finishing hour to chat and reflect. It was exactly what I needed and I’m so continuously grateful for my little writing community.
I was also lucky enough to have my words published again by the ever excellent Dear Damsels on the 10th. For their theme of “connection”, I shared a personal essay about the challenges of long term grief, and the difficulty of maintaining a sense of connection with my mum. The piece is called “Linking Objects” and you can find ithere.
It is probably one of the most honest and vulnerable pieces of writing I have ever shared but I often think those are the stories that most need telling. I had tried looking for stories like it when I was feeling alone but couldn’t find them, so I wrote the piece I needed to read when I was struggling the most.
Towards the end of June, after three months of total isolation, I decided to take advantage of the option of forming a social bubble. My dad isn’t too far out of London and was able to collect me to go back to his house for a week, where both he and my step mum have been taking every precaution.
It wasn’t the ideal situation – such a thing doesn’t exist at the moment – but I had definitely reached breaking point when it came to being alone. It was a relief to be able to spend time in a house, making use of a variety of rooms instead of just one, sitting in the garden after work when it got warm and playing with their new kittens.
I found it harder to come back to London than I had expected and to go back into isolation on my own. I like to have my own space – and I was beginning to crave it by the end of the week – but it also feels extra heavy having to go back to doing everything myself, with all my symptoms, after a week of feeling the difference of a burden shared.
I think it’s the unknown element that is challenging here too – not knowing how long I’ll be alone for now or when things might start looking up, all too conscious that my world can’t open up much more until COVID is no longer a threat.
Now is the time, I suppose, to lean on my vision board and action cards, to try and feel a sense of meaningful movement when everything feels either chaotic or unbearably still. Even through all of this, I have to believe that there is still the capacity for hope.
At the end of 2019 I had started to rethink how I wanted to write my reflective blogs, as monthly reviews had stopped feeling like the right fit. It began to feel a little repetitive and I would beat myself up if I didn’t have much to say. This year, I decided, I would write quarterly round ups instead to give myself a little more space and to be able to give each month a lighter touch. Given one of my aims for 2020 was to try to be a little bit more steady and gentle with myself, it felt like a better plan.
Of course, when I decided to make this shift, I hadn’t reckoned for quite so much changing quite so rapidly by the time the first instalment came together, but let’s see how this goes.
Here’s how I’ve been doing so far in the slow yet tumultuous shift from winter into spring.
The beginning of the year already feels a little foggy in my memory, like scenes from an entirely different world. After a couple of restful days sleeping off new year’s eve, my 2020 began in earnest with a trip to Wales to visit my grandparents and bid farewell to their home, which sold later that month.
The slow loosening of ties to that particular landmark came with a multitude of emotions; it was one of the last concrete links I had to my life with my mum, so I felt grief stricken to lose it – it meant losing another piece of her when so much is lost already.
My heart felt so heavy, visiting my grandparents separately – now in different care homes because of their vastly different needs. I felt relieved to know they are now receiving what they each need to have the best quality of life but at the same time it all feels a little like we’re preparing for more endings. One of the markers of my sense of normality, an anchor of my grief for my mum, shifted with that visit. It was a strange start to an uncomfortable year but I’m glad I got to take the time to honour it all.
The new year brought with it a new job – in the first week of January I joined the youth engagement team at YoungMinds on a three month contract, providing short term support and project management for their Activist programme. It has been such a joy working with the team and the incredible young people the charity supports – I definitely feel like I landed on my feet. Around the edges, I also continued to deliver Mental Health UK’s new resilience programme for young people at a school just north of London. It has been a real privilege to focus all my work time and energy on projects I’m so passionate about over the last few months.
January also saw me return to the House of Illustration, for a six week course “exploring drawing”. As I’m sure you can imagine – if you’ve read my blog before, at least – I loved it. We looked at the fundamentals of drawing – from line, tone and colour theory to drawing the figure. I loved trying out different techniques and materials through January and February, picking up new tricks to develop my approach to illustration. I still have so much left to learn but it was a brilliant set of new building blocks to start from.
On a similar theme, January was the first time I saw my illustrations in print and it was such a special moment. Three of my drawings were published in the Dear Damsels 2020 annual, inspired by the story “Deadhead”. I would love the chance to do more work like this as the year goes on.
The ever present background hum of my health continued on as well, as I’ve tried to navigate my way into a new routine. In retrospect, I’m glad I packed so much into such a brief window – whilst I still could – but at the time taking on a lot in one short space was quite overwhelming for my body. Ever since my relapse I feel like I’ve existed in a constant state of learning and unlearning how to cope with my conditions.
The beginning of the year hasn’t been the smoothest for my body but I have made some positive changes. From creating more structure in my week which allows me to manage my energy levels better, making time for the things I enjoy so that I don’t feel like I only live to be well enough to work and even making tough choices about my care. After over two years with my old osteopath, I shifted gears in January and decided to move to a new pracitioner closer to home. It was another big change during a month of upheaval but having more flexibility, less travel time and finding someone who caters every session to my needs has made it worth the shift. I want my life to work with my disability but not to be dominated by it and this was an important step towards that vision.
One of the great highlights of my February was spending Saturday mornings with Write Like a Grrrl, for their third creative writing course. I’ve struggled to focus on writing this year so far, with so much energy going into work and managing my health, so it was comforting to have dedicated time and space to think and talk about writing each week.
We looked at all sorts, from writing humour, to self care for writers and I received invaluable feedback on the first two chapters of my second draft. As always, I would thoroughly recommend signing up to a course and finding your grrrl gang if you can (especially as at the moment all WLAG courses are being run online – so aren’t limited to just the usual cities).
I made some time for culture in February too, topping up my creative well by going to the Tate Modern for the Dora Maar exhibition. I was really inspired by the constant evolution of Dora’s artwork and modes of creating – it reminded me that you don’t have to focus on just one medium to be a great artist and have an impact, something it can be all too easy to forget. Sometimes I wonder if I should focus on just one creative outlet but from now on when that question pops up, I’ll just remind myself to be more Dora.
Classes and culture aside, February was otherwise mostly swallowed up by work, but of the best kind. I led the planning and delivery of induction training for a brand new cohort of YoungMinds Activists – a time consuming but incredibly rewarding task, empowering young people to become changemakers around youth mental health in the UK.
Before March came to a grinding halt, I did manage to sneak in a couple of highlights.
First of all, I attended the Friday of WOW festival at the Southbank Centre where I went to talks on the badass women of history, the importance of self compassion in behaviour change and becoming an accidental activist. These are the sorts of events and spaces I’ve missed out on all too often since my relapse so it felt great to be able to dip my toe back in the water, albeit briefly. This was pretty much the final thing I did before beginning to social distance.
The last time I was in the YoungMinds office was very early on in the month as well and actually coincided with me interviewing for a new contract. I’m excited to say that, as of April, I’ll be taking on a new role leading the design and delivery of a new programme enabling a small group of our Activists to effectively and safely tell their stories in the media and their communities.
It’s the weirdest possible time to be starting a new job but I genuinely cannot wait – I’ll be focused pretty much solely on this project until the end of the year (although I could be tempted to do the odd freelance hustle on the side as the job will be part time). I’m really excited to take a different approach to work this year – one with more focus and depth on one specific area. It was what I wanted to strive for as the year began, before all of this, but the stability it is giving me now is also a blessed relief.
And I guess that all this leaves is the topic of the hour… coronavirus. As someone living alone with multiple long term conditions – at least one of which seriously affects the functioning of my immune system – this situation has hit me hard. Not to mention feeling concerned for members of my family who are at risk. Moments like these make me feel even more vulnerable, having just the one parent. I know all too well how fragile life can be and that’s terrifying. It’s exhausting being worried about so much all of the time – a reality that all of us are facing, disabled or not. It truly is an inconceivable time.
I don’t want to splurge too much of my anxiety or pandemic panic in a way that isn’t helpful – we all have enough of our own as it is – but it’s impossible not to mention it, so instead I thought I’d list out a few of the things that have been helping me to cope.
The first thing that has been helping me is art – I decided to use money I might have spent on a holiday this year to buy myself an ipad pro and apple pencil instead. Teaching myself to use these new tools, along with procreate, and creating digital artwork has really helped to give me a productive and positive focus. I’m someone who struggles to meditate but when I draw it’s one of the only times I find my brain is silent. I feel so lucky to have the resources to let me self soothe through creativity, especially since I can’t seem to sit down and write to save my life with all the nervousness rotating round my brain.
The second is achingly obvious but going for walks, especially when the sun has been out, has helped me to feel better. I’ll admit I spend a lot of my walks in a panic at people who aren’t keeping far enough away, but I’ve found that taking a mindful approach to walking has helped. I’ve made myself stop to notice the small details, the variety of nature that has kept on growing and thriving, the different colours that I see. At a time where we feel like time is standing still it can be helpful to remember that the world is moving forward, even if we feel like we’re not.
Cooking and baking have also helped both in terms of keeping me busy and giving me a feeling of control. Knowing that I’m taking the right steps to look after myself helps me to feel less helpless. On that point, see also: yoga, weekly therapy over the phone and using moisturiser more often than my poor dry skin has ever seen before in a three week period.
I think my final parting thought on this is about mindset. One of the few benefits of having been ill for half my life is that I’ve gotten pretty used to being limited, stuck inside and not getting to lead the full life that I want to. For the longest time I let resentment build up about the situation and I tried as hard as I could to fight against it. It’s natural to want to rebel against feeling trapped in, but I’ve learned that it just makes the feeling worse.
The key to living a rich life despite being restricted for me has been acceptance, and I think that applies to this situation too. If you get trapped in cycles of thinking about what you’ve lost, how you wish things were, what you wish you were doing, it will only lead you in one direction. Frustration, anger and upset. And those are valid feelings – it’s ok to honour that sense of loss – but I think it’s most important to accept where we are and focus on working with what is available to us now. What are we able to do in this situation to feel better? What will give us purpose? How can we begin to see this stretch of time as being worthy?
I remember venting to my therapist a few months ago about my frustration that I have to spend so much of my time resting instead of living my life as fully as I want to. She challenged me to look at it differently and to see what that rest gives me. The rest allows me to work, to go to classes, to draw, to write, to spend time with my friends. It’s not what I would ideally like, but the rest is serving me too. Her questioning struck a chord with me at the time and I think it rings true now as well.
If we reframe this, to see what social distancing and isolation is enabling, it might be a much healthier way to cope. Stop looking at the life you’ve lost and focus on the lives you’ve saved. This won’t be forever for most people and we are more able to cope with challenges than we think. Try not to focus on the big unknown, the months of uncertainty ahead, and focus on each day, each hour, whatever chunk of time feels manageable for you right now. Focus on what you can control in this moment or on this day to feel happier and stronger, and you never know what wonderful things you might discover in unexpected places.
My favourite example to use is that I only began drawing as something to help me feel a sense of purpose when I was largely bedbound. It was something I could do without much energy or concentration, even if my pain levels were high, and it helped me to feel a bit more grounded. Starting to share my drawing on social media and in zines helped me to feel more connected whilst I spent most of my time alone and in pain. It started as a tool for coping but 3 years later art has become a huge part of making me happier and healthier as a whole. Something really incredible came out of one of the toughest stretches of my life – I promise, not everything is lost just because your world got smaller.
I think it’s fair to say that this year has knocked all of us for six. I have been sitting for a while staring at the blinking of my cursor on the screen not knowing where to start, which I suppose says everything you need to know about 2019. On all levels this year has felt primarily chaotic and turbulent, one that never let you quite settle or sit still. I’m leaving the big picture out of this blog, though, to focus simply on the personal of what this year has meant for me.
I have begun to see posts about how reflective blogs can make other people feel worse if they haven’t done as much, which made me wonder if I should write this blog at all, but at the same time it’s a helpful tradition for me and I think it’s right to make space for reflection – both good and bad. I hope that I’m generally quite honest on my blog and so I want my annual reflection to be in keeping. This isn’t intended to be a pure highlight reel – though I have plenty of highlights I want to recap – but also a space for learning from challenges and painful moments, as well as looking ahead with hope.
As with last year, I want to set out with aspirations for the new year – that are more thematic than specific resolutions. Last year I committed to the themes of “create”, “learn” and “be fearless”. Let’s see if I achieved them.
Looking back at what I achieved with work last year and then at how my business has gone from strength to strength this year has been such a source of encouragement for me. I went freelance from a position of necessity – I needed flexibility and control to be able to work and manage complex health conditions – but I have found myself this year in a position of real strength.
I began working for myself in an attempt to cobble things together in a way that worked for me; my vision of success was survival. Two and a half years on, my business has grown with me to the point where I’ve been turning work away instead of seeking it. I don’t think I could have imagined that work could look like this when I started. That’s not to say it’s perfect – I’ll go on to that part later – but it is so much more than I ever thought it would be.
This year really has allowed me to do so much. From frontline work with young people working one to one and in groups, to consulting on the youth engagement model for an international campaign, it has been a rollercoaster twelve months.
This year I have:
Worked with over 1250 young people as a coach, mentor and educator covering topics such as mental health, social action, confidence and skills development
Trained over 200 teachers and youth workers to support young people’s mental health and wellbeing
Supported around 150 volunteers to work with young people to develop their skills and broaden their understanding of the world outside of school
Worked with 10 charities as a consultant, facilitator, content designer and project manager
A pro-bono bonus…
The beginning of 2019 was also special as it marked the beginning of an exciting new project, which I piloted with Write Like a Grrrl. From January to March we ran a version of their initial creative writing course for girls and young women aged 16-24 from the brilliant Arts Emergency. Teaching the course and getting to know the girls was a privilege and a joy, and I’m hopeful we can launch the project on a greater scale in 2020. For me, the combination of creativity and teaching really is a perfect blend and the course had a brilliant impact for the girls we worked with too.
This year I continued my work with Action for M.E, becoming an official trustee in October after a year of shadowing the board. In addition to attending and contributing to meetings, I’ve also used my voice to raise awareness and understanding of M.E via a couple of media opportunities. I spoke to journalists at both The Sunday Times and UniLad to share my story and experiences. I hope my words helped other people with M.E to feel less alone and also helped more people to understand the genuine impact of the condition. I look forward to doing more to support the M.E community next year.
This year has seen me do the smallest amount externally in terms of writing since 2015 which – given how much I’ve done this year – feels kind of wild. For me, this has very much been the year of the novel.
I have poured my heart and soul into this project this year and it has paid dividends (not literally… but on a soul points level… jackpot.) This was the year I discovered the best motivational tool for my writing was… stickers. I wrote feverishly over the summer (sticker chart in hand) before finally finishing the first draft in September. Not long afterwards, I went on a long anticipated writing retreat with Arvon which I was very generously gifted as my 30th birthday present. It was a week of workshops, tutorials, quiet time (wifi free) and reflection. I loved it. I left with a plan for my second draft and a fresh wave of momentum to keep on going. I’m now about halfway through draft two – having made a lot of significant changes – and I feel more positive about it than ever. The novel has probably been the biggest joy (and struggle and loss of sleep agent etc etc) of my year.
In addition to the novel, however, I still snuck in one publication with my favourites over at Dear Damsels. Way back in the spring, they shared a piece I wrote for their theme of ‘escape’, in which I explored the time early on in my relapse where I felt like the only way out was a geographical move, when truthfully I was desperate to escape my body. As well as sharing my words on their website, they also discussed the piece on their podcast, which felt incredibly special. This wasn’t my first podcast feature of 2019, though, as the podcast “Airing Pain” did a feature on Lancaster University’s Translating Pain project. My contribution to the anthology was one of the pieces read and discussed in the episode and I feel so lucky to have had this experience not just once but twice this year. It really is so affirming to get positive feedback and support for something I work so hard on (and often doubt myself about).
Another creative outlet that has brightened my year immeasurably has been investing more time and energy into developing my skills as an artist. 2018 was the year I started dipping my toe in the water, building my confidence and interest; 2019 has been the year I’ve really embraced drawing and painting as a core part of my life.
I began 2019 with a short course at the House of Illustration, exploring different techniques for illustration over four evenings. I tried out collage, typography, pop up art, watercolours and monoprinting and loved every minute of it. Once the course finished I was keen to find other spaces to keep drawing, to meet other creatives and keep learning and trying new things. This led me to discovering the incredible Sketch Appeal, who run all sorts of brilliant events encouraging people to embrace the joy of drawing and creativity. I have attended several of their workshops, trying out different techniques and collecting a stack of mini portraits to treasure. I was so thrilled when they asked if they could feature me as part of their Christmas countdown of artists and I plan on keeping on sketching with them well into the new year.
Taking my interest in art outside of my flat has really encouraged me to do even more at home. Drawing more – and sharing my efforts over on instagram – has led me to some wonderful connections and even a commission from Dear Damsels. My first official publication and credit as an illustrator is coming up in 2020 and I couldn’t be more excited about it.
One of the main milestone moments of this year was turning thirty. I didn’t know how I was going to feel – and dreaded it a little bit in the lead up – but actually it was probably one of the best days of the whole year. It was very much my kind of celebration done my way. I started the day quietly at home, wrote a little and then popped on my favourite 70s disco dress (of course). I met some of my best friends for a wonderful brunch and then hit the pub for a relaxed afternoon (with a surprise cake). It was a day that set the tone for this new decade pretty perfectly, and I followed it up with a few days by the seaside to write and set some goals. Would very much recommend.
Aside from the big day and the other aspects of my year summed up above, here is a broad brush look at some of the things I’ve seen and places I’ve been this year… not bad, all things considered.
Plays: The Inheritance; Alys, Always; Grief is the thing with Feathers; Home, I’m Darling; Emilia; Hoarding; The Lehman Brothers Trilogy
Exhibitions: Diane Arbus @ Southbank; Seaside Photographed @ Turner Contemporary; Renaissance Nude @ The RA; Picasso Museum and Atelier des Lumieres in Paris;
Trips:Broadstairs, Margate, Paris, Devon, Bath, Wales
Old habits die hard
I have always been the best at looking after my health when my health as been at its worst. It sounds funny when you say that – surely you’re best equipped to look after yourself when you’re faring better? The thing is, when you start feeling a bit more like your old, healthier self, it’s ever so tempting to avoid acting like you’re sick at all. If you’re so often starved of energy and life then when it comes to you it’s easy to snatch at it and run.
No matter how often my therapist tries to steer me away from self-blame, I’m sure that my relapse could have been avoided if I hadn’t been so dead set on being like everyone else and pretending my health problems didn’t exist. I took the milder form of my conditions for granted and then promised I wouldn’t ever do that again.
Except… I did a little this year. I’m nowhere near as well as I was four or five years ago – I would still class myself as moderate on the scale of my conditions – but I’m far better than I was in the immediacy of my relapse. It became tempting to push the boundaries this year, and also harder to justify to myself earmarking time to rest, time that shouldn’t be taken up by work, time for my body. It becomes easy to doubt yourself – am I sick enough to warrant this? I have always been ambitious, always hated letting people down, always a little bit rebellious against being held back by illness. I am someone who wants to do everything and struggles when my body says I can’t. I promised I wouldn’t let the rebellious tone or career ambition win again after my relapse but I did quite a few times in 2019.
I’m genuinely proud of everything I’ve achieved with work this year and the work I’ve done but the shiny highlights above don’t account for the personal toll. This year I remembered that pushing myself to work too much leads to feeling overwhelmed and my body not coping as it should do. Pushing too much means I’m always on the back foot and don’t end up with enough energy left for myself or my friends. I miss a time where my hobbies weren’t primarily conducted from a collapsible desk in bed. So much of what I’ve achieved outside of work has been done either through exhaustion or in spite of it.
I know that as we move into 2020 I need to be more mindful of how I plan my time and what I say yes or no to and why. I need to stop letting my need to be like ‘everyone else’ – when I’m not – take over from who I actually am and can be. I need to stop thinking that I ‘should’ be working more or if I have time to offer I should do so. I need to remember that a great contract doesn’t necessarily result in a great life for someone like me.
If next year contained fewer work highlights and more personal joy and stable health then that would be a win.
It’s ok to not feel ok
I think one of the hardest things for all of us to do is to sit with difficult feelings. We are constantly told from every angle that happiness is the ultimate pursuit, which suggests that any other emotion should be shunned at all costs. The thing is, that’s not actually helpful and tends to prolong the challenging feelings you’re trying to avoid.
This year hasn’t been without its share of challenges for me emotionally as well as physically. As I mentioned above, trying so hard to succeed in work and be a yes person for my business had an impact on my social life and feelings of connection. Loneliness and isolation are a common thread through the experiences of people living with chronic illness and there were moments this year where I felt that in full force. I also experienced a painful heartbreak this spring which was difficult to get through and involved a lot of emotions I would rather never have felt. Someone I trusted completely showed themselves to be someone else entirely and that’s a difficult thing to recover from. However, slowly, I have recovered and that’s because I let myself feel the hardest emotions, accepted them and let them pass. I trusted that in time I would feel stronger again.
I have had a lot of moments this year where I’ve not felt like I’ve been coping, like everything is too much and I’m not sure I can keep going. The one thing that has helped has been accepting those feelings as part of being a person – of being alive. Knowing that there is still joy to be had, even if not in that moment, and that negative emotions are valid experiences too. I have had my heart bruised and I have felt defeated but I have also been shown the kindness of strangers, the strength of my friendships and just how much love is open to me if I let myself receive it. The only real constant in life is change, and I’m slowly learning to be better at living with it and accepting that it won’t always feel ok.
The brightest moments of this year have come through sources of connection. Meeting wonderful creatives through Sketch Appeal, the ever enriching sisterhood of my writing group, meeting brilliant people through my work, deepening existing friendships and brilliant moments of pure love like my birthday.
My life, as I’ve admitted earlier on, is very much geared towards going through everything solo – I freelance, I live alone, I often don’t have much energy beyond my work – and I would like to try and change that a little this year. I want to find a better balance, making new connections and building a better sense of community, as well as dedicating more time to my favourite people. I think 2019 proved to me that, whilst I value my independence, I’m happiest when I’m not trying to do everything on my own.
This one had to get a second innings, didn’t it? This will probably be an eternal commitment but it’s nice to renew my creative vows annually (or something like that?), I suppose. In 2020, I want to finish draft two of the novel and, if I’m very focused, begin making headway on draft three. I would love to be writing my 2020 blog significantly closer to feeling about to start exploring publication.
I also want to make more time for writing outside of the novel in 2020. I had been resisting focusing writing time on anything else, but I found my creative energy for draft two was restored instead of depleted by making time to write some personal essays in the autumn. It would be nice to connect through writing a little more next year than I did in 2019. This goal will hopefully be supported by the third Write Like a Grrrl course, which I’m due to start in January, and a place at GrrrlCon in June.
In addition to writing, I of course want to continue developing my skills and confidence as an artist. I have a new course booked at House of Illustration in the new year, focused on the more technical side of drawing, which I’m hoping will help to take my work from strength to strength and give me new opportunities to explore.
This one is probably the loosest of the lot but feels important to put in there – and a good note to end this blog on. The general idea around evolving for me is to step away from old patterns – as I mentioned above – and to really start to live mindfully.
I want to be more conscious of my choices, to think more holistically, to have the courage to say no to things that won’t serve me and yes to the things that will (even if they scare me a little). I want to give myself the room to grow and the permission to change. Not so much ‘new year, new me’ as ‘new year, stronger me’.
For the first time since I started writing my monthly round ups, I just didn’t have the energy to write the blog. I’m not sure quite why but it confirmed a feeling I had about reworking how I use my blog next year.
This autumn/winter has felt tough, as my last couple of blogs have hinted at, and that fatigue has taken its toll. I thought I would make a combined effort and write a little about both November and December to catch up.
Work has been incredibly busy towards the end of the year. I spent a great deal of it in schools, finishing up my work with Future First – whose core programme which required freelance support finished this term – completed the HeadStart Action programme at my schools in Haringey, and began delivering a new resilience building programme on behalf of Mental Health UK.
I also supported YoungMinds Young Activists to hand in a petition to parliament in early November, calling for the government to take early intervention in young people’s mental health seriously. I dipped back into Time to Change in November as well, delivering Young Leaders training in Southampton and supporting campaigning training for Young Champions in Manchester.
It will come as no surprise that writing has made up a big chunk of my free time. I made some big changes to the novel, after feeling a little stuck, and am now about halfway through the second draft. I’m feeling so much better about it and have a rough outline of the rest of the draft noted down so I’m hoping I can use the festive break to make headway with the second half.
I’ve also spent a lot more time on sketching and drawing in recent weeks. I attended the SketchAppeal Christmas workshop for a dose of collective festive cheer – which is often missing when you go freelance – and also was one of their featured artists in their Sketchmas Countdown. You can read a mini interview with me on all things art, wellbeing and WHAM! on their website.
In other artistic news, I also had the joy of being asked by the wonderful Dear Damsels if I would create an illustration for their 2019 annual. Creating the piece – inspired by a story that will feature in the publication – was such a fun creative process and I’m so excited to see it in print in the new year.
In December I enjoyed a trip down to Keynsham/Bath for my first board meeting as an official Action for M.E trustee, getting to know one of my trustee colleagues on a shared road trip (as well as commiserating about the election results the following day).
I don’t know if you’ve heard but Christmas and New Year are happening soon so that’s going to be the next couple of weeks sorted! After that it’s getting back into work and starting the new year fresh.
As has become tradition, I will be writing an annual review and sharing that come new year’s eve. In the meantime, have a wonderful Christmas, however you choose to celebrate it, and see you on the other side.
For me the month of October felt a little bit patchwork, weaving together a multitude of pieces into a nice but jumbled whole. I guess that feels somewhat indicative of my year more broadly, which I suppose is no bad thing.
This month was mostly a slow plod into autumn and working a little bit harder than usual to manage my health. Here’s my round up of it all.
The core of my work this month has been with Inspire! on the Headstart Action programme, running the programme in two of my local schools. We’ve been focusing on the so called soft skills and employability for the most part but this week kicked off the second phase of social action. I’m looking forward to supporting my cohorts to make a difference in their local communities. I’ve also been doing my usual dash across the South East with Future First to run careers workshops with secondary schools – it’s been a busy autumn term so far for delivery work.
In addition to youth facing work, I’ve also been gearing up for a new role as a Training Associate with Mental Health UK. From November, I’ll be training up teachers to run resilience programmes for young people in schools as well as co-facilitating their first cohorts.
This month has been a bit trying when it comes to my health conditions (I feel like I say this every month but we’ll gloss over that – basically it has been harder for the last 31 days!) I’m not sure what it is – I’ve not been doing especially more than I’ve been used to this year but something has been causing my symptoms to flare a little more strongly. Maybe it’s the change of seasons – the cold always hits me quite hard – but whatever caused it, I’ve been in the mood to hibernate significantly more.
One of the biggest days of my month, however, was health related but for all the best reasons. After a year of shadowing the board at Action for M.E, I was voted in officially as a Trustee at their October conference.
I’m sure it will come as no surprise that writing has formed a large part of my world outside of work this month. I’ve been filling up my sticker chart with gusto, kicking off my second draft and even writing some personal essays to submit to magazines.
I was also really thrilled to discover one of my pieces for Dear Damsels – “I have been thinking a lot” – was also featured on their podcast earlier this year. You can listen to a brief extract and discussion of my writing in their June episode. It was such a joy to hear my work spoken about so warmly and I’m so grateful for their ongoing support.
Finally, after months of putting most of my creative energy into my novel, I finally made some time for art again this month. This culminated in attending a full day with Sketch Appeal for their Inktober special. I had an amazing time co-creating artwork and drawing/painting portraits of the other attendees. I love taking home the portraits created of me – always so different – and the connections I make on the day. So much of my recent energy has gone into work and solo creative practice and it was good to remind myself that making time for fun and friendship is really important too if I can manage it.
Looking ahead to November, my calendar is mostly more work, work, work. I’ve got plenty lined up with everyone I worked with this month, alongside some youth engagement work with YoungMinds and training for young champions at Time to Change. Expect a lethargic blog post in thirty days!
Otherwise, I plan to keep up the pace of my writing, continue making time for art and for my friends as well. Fingers crossed my body sorts its act out so I can manage to pack it all in! I’ll see you on the other side.