It’s very rare in that you can point to a single time or event and say that there is a key moment, which moving forward shapes a piece of you irrevocably. I’ve been lucky (if that’s the right word) enough to have had two of these, the second of which happened on my 28th birthday. I was at a music camp, I’d recently emerged from 18 months of very dark and dangerous depression, and here I was among new and old friends from both Europe and the US, on my birthday, singing glorious harmony, in a lovely venue in the northeast of England. Having been suicidal six months or so before that, the sheer joy of not just being alive, but of rediscovered vitality and lust for life had me absolutely buzzing. May to August 2016 may be the happiest extended period of time I ever have – and it was so good that I’m OK with that.
And so, as the band practiced and a ceilidh dance was called, I thought “Well if not on your birthday, in this mental space, then when can you dance?”.
Not there as it turns out. I got through it, but after only a few minutes of dancing, my feet, knees and ankles felt shot to pieces. I staggered back to my room and laid down on my bed, distraught and hurt, and not just physically. Mentally it was so unfair. I had gone through months of work and toil to haul myself out of depression and be in the best mental shape I’d been in for a decade, and yet I still had a body that let me down and wouldn’t join in. I still felt 50 in a 28 year-old’s body. And that realisation, that grief, that rage, that injustice, that loss and that confusion stuck with me. Not intrusively, but it was always there after that. In the December I went back to a therapist to look at it, because I couldn’t shake it – I’m still working it out nearly two years later. That moment and all that has followed because of that realisation is also why this blog is here.
Last week I got invited to a ceilidh dance. It was a strange, unexpected opportunity to reflect on the then and the now. Since I started therapy in January of 2017, and this blog in January of this year, a lot has changed. And one of the changes is that I’ve come to the view that for me, the social model of disability is inadequate and ill-fitting. Growing up I didn’t know what the social model was, but looking back I realise that my upbringing pretty much inhabited the attitudes that the model promotes, finding that identity challenged and then changed has truly been a journey. It has brought with it a lot of anger, grief, loss and rage. I sometimes worry that this little corner of the internet could be mistaken for a never-ending stream of misery. I wanted to take this opportunity to share some of the positivity that this journey has brought and will continue to bring me because there’s already been so much of it. It’s given me an insight into the way I do things, the way I see myself, caused me to challenge some seriously negative beliefs (still working on these), but most of all it’s caused me to reconsider negative emotions.
When I started my therapy, I had a very simple attitude to my negative view of my disability and body: “make this not be happening”. I was uncomfortable with being resentful of my cerebral palsy, because I had never heard another CP person express any kind of negativity towards their diagnosis. I didn’t know rage was allowed, and so therefore it had to be stopped. I thought there was something wrong with me for being angry at CP. I’d always just got on with things and played the cards I was dealt in life. This feeling of wanting to turn round and punch the card-dealer was weird, wrong and unfamiliar. I was so angry. And that’s an emotion I’d never identified with for myself.
Since then a lot has changed. How? It’s hard to explain but I’ll try. When the dance invite came into my facebook feed, I was still angry, I still feel a loss for the opportunities I’ve never had, a rage for the injustices of disability on all sorts of levels and sometimes I still have the crushing sense of feeling elderly during my prime years. All of the other positive things are there too, but I will not deny the negative emotions. Maybe that is the best way to describe the change. As much as I’d like to reach a point through therapy and other work on myself, I know that for me, it is impossible to flat out make this not be happening. And that might just be OK. When I thought further about what I wanted to get out of therapy, I moved from making it not be happening, to finding that trendiest of all self-care words, balance. Balance sounds great, but what I found was that in looking for balance, I was trying to tailor my emotions to fit into some kind of neutral gear.
The thing about balance is that, what it means in practice emotionally, is regulation. Of not getting too high or too low. Of stillness (after all isn’t that balance in every sense?). Of watchfulness. All of these things have their place, but emotionally, balance seems more and more to be unintentionally denying your own strongly held feelings. I’ve moved away from balance, and what I’m looking for more and more is ways I can accept myself wherever I am mentally. If balance brings the stillness of equilibrium, then by default that means that nothing is happening. And I’d rather experience life in all it’s richness, lofty peaks and dark pits. I’m not OK with all of those yet, but more and more I find that the goal is to let myself feel whatever is there. ‘Balance’ in our neoliberal society, feels more and more like badly simplified Buddhism, or what Daniel Dennett has termed a ‘deepity’ – something that sounds profound, but when you dig a little deeper, it’s superficial meaningless nonsense…
For me, balance is often a myth. I find that looking for honesty with myself and how I feel is ultimately more rewarding.
If time allows will I go to the dance? I don’t know. I’ve been at dances where I’ve sat and watched and enjoyed the music, noise, fun and cider. I’ve been at dances where I’ve had to leave the room because I so wanted to join in on my feet and knew that I couldn’t – which is still sometimes deeply upsetting. And both of those responses are OK. Part of my work now, is to not feel guilt for either of them. I don’t want to necessarily be balanced in the middle ground between those two spaces, but to slide all over the spectrum of emotion and be OK with it. I’ve a long way to go, but a simple invite to a ceilidh made me realise I’ve come a long way.