Maybe it’s because recently I’ve had a bit to do with something called Terrible, Thanks For Asking, but I’ve found myself trying to sit with grief and grieving. I can’t quite work out if it’s a knot I’m trying to untangle, or a bruise I’m letting myself push but I’m trying to just let it be, whatever that is. I have already written about my sense of Grieving The Non-Existent and I rather like how I’ve laid things out in that entry, but over the last few days I’ve found myself back there again.
It’s something that takes up a lot of my mental bandwidth. That’s not to say that it’s always at the forefront of my mind, but it is a constant process running through my head of late. I think this has a lot to do with the permanent nature of disability. That doesn’t mean that things will always be the same, CP is complex and my abilities and energies shift from day to day – but nevertheless CP is a constant backdrop to my life which I now have to factor in. I used to feel able to ignore it because it was so constant, but the older I get, and the wiser(?) I get, the more I realise that that was just a way of running from the issue. It’s difficult to place it, because part of me desperately wants to move on from this space. Part of me still wants to run away. And it’s very difficult to realise that the secret is out. The fourth wall is broken, the genie is out of the bottle and the toothpaste out of the tube – because of this, running away from the realities of CP and how I feel about it, no longer works. Telling myself that disability doesn’t matter to me, is a lie that rings hollow. And there’s a weight to that realisation that sits heavy on me.
Sometimes the mental work and bandwidth that that this causes me comes out through anger, a red-hot rage that means I snap very easily and can punish myself very harshly, but of late, there is that cloud of grief that stays with me throughout my day. I am not always unhappy in that, but it’s like having someone walking several steps behind you, and occasionally, they catch up. Every time I catch my reflection in a shop window as I walk past, there’s a realisation of my difference, every time my back twinges in mundane circumstances, or I complain of pain in my feet, I feel that subtle stab of grief. And because these triggers are nothing new, part of my mind is still trying to dismiss them as something akin to vanity or at least as a non-issue. “Stop complaining” I hear myself saying, “they’ve heard it from you before”. I find a real difficulty in feeling grief for something that is not new. Even now, after 18 months of therapy, in which this topic has taken up a lot of the time, I still have to work to convince myself I’m allowed to feel sad about something that I didn’t used to worry about. I nearly always win the internal argument now, but it’s hard work. Part of it still feels illegal. A taboo. The reserve of the attention seeker, embittered at the world for being dealt a poor hand. And I don’t feel that, I don’t feel that the world owes me an explanation or some sort of karmic compensation, but in some ways that makes it all the harder to accept my own grief.
I’ve listened to the podcast several times since it aired. And that is not from pure self-indulgence. It is because I know all the things I said in that interview are true for me. And I have needed to keep topping up that reserve of truth, because if I hear it, it helps to solidify it. It helps to have that grief made solid, somewhat defined, because the more that happens the more I can sit with it comfortably. I’ve had a number of responses since the episode dropped, they’ve all been positive, supportive and have often come with excellent questions. And having those dialogues helps me too. Because whatever perspective people bring, be it as a disabled person, a parent to a disabled child, or someone with an outside view, it makes this journey less lonely. It allows me to start piecing together the map of these feelings, it makes them real. And the more real they are, the less that I feel I ‘should’ move on and ‘deal with it’. The less I have to just get on with it.
This whole thing is an uncomfortable truth, a complicated truth, maybe even an unusual truth, but I’m shakily coming to the view that it is my truth. And that if that current truth contains a deep grief, that I don’t yet know how to live comfortably with…
Then maybe that is OK.