Quarterly Review: Autumn to Winter

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…

Until next time.

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