It’s been a while since I last wrote here. I gave myself a break over Christmas with the idea of returning in the new year refreshed and replenished but for some reason I’m feeling a little lost, directionless, a little… depleted.
My head is crowded but when I sit down at my kitchen table to write I feel stuck; as though I’m trying to stick my pen in my body and write what doesn’t want to be written – religion, existence and the enigma of the mind. And love too, the tsunami of pleasure that comes from the simple motions of connected lives, things like making dinner, building our imaginations in Lego, the warm pressure of bodies that begat one another, if not in flesh then in feeling. How to explain the richness of a life many would regard as unstable, diminished, different. Why try?
Right now everything I think about committing to the page seems empty and irrelevant – more a reach than a reflection. Not surprising considering the seismic shifts in perspective 2014 brought me I suppose.
My diagnosis last year with aspergers and bipolar brought me immense joy, something akin to being handed a gift. The ill-fitting platitudes about ‘coming to terms with things’ and ‘moving on’ indicated some didn’t get it, their sympathetic murmurs a vocalisation of their expectation I’d be distraught not delighted, eyes sizing me up as in some kind of denial. But consider this: a lifetime of not being good enough/trying hard enough was recast into a narrative that absolved me of the self-blame I’d lugged around like a recalcitrant toddler. Finally! External, qualified vindication I wasn’t lacking – just wired differently. This offered me the opportunity to do something I’ve never been able to: accept myself as I am.
What greater gift is there?
For a while I felt a sense of release, and walked around as though on a cloud, but as the euphoria subsided it became evident that fully realising the implications and inferences of my altered reality was a more gradual process than I had first thought. The thunderbolt clarity and sense of freedom I get when I remember my justifiable reason for being me (does anyone else need a justifiable reason for being themselves?), is, at this point, momentary, unsustainable – the real work lies in tattooing this new information into my existing personality so it becomes part of who I am.
I’m a literal thinker and figured simply having my condition validated got me off the hook from Sisyphean striving and moving directly to self-acceptance (pass Go, collect £200). Not quite. Turns out it’s a very non-linear journey.
I’ve learnt a lot about how my conditions affect me – and how to recognise and deal with autism in my daughter. Unconsciously, (and often frustratingly) I still measure myself by neurotypical standards; habit again – it’s what I’ve always done. But inside I don’t ‘feel’ autistic. Looking out I don’t see the world through a lens watermarked ‘mentally ill’. I don’t identify myself as disabled in any way (I’m reminded of a post I wrote some time ago detailing how I discussed mental illness with a new friend and never thought to mention my own). I’m skilled at hiding my difficulties, and the trusted friends I’ve asked said if they didn’t know of my diagnosis, there’s nothing about me that would tip them off. I feel fraudulent laying a claim to disability.
But I came to realise much of that is because of how I view disability: with the emphasis on the first syllable. Joining online discussion groups and speaking to others with similar difficulties has shown me disability is about being different, not less. It’s about understanding the bigger picture, accepting disability exists because of the way society is organised rather than by a person’s impairment or difference.. We need to embrace neurodiverse perspectives the same way we work to embrace diversity in race and culture.
So I remind myself it’s ok to feel as I do, and more importantly, to give it expression. I’ve spent so long hiding my deficiencies (and the gnawing secret shame deception brings) it’s instinctive. A lifetime of working to blend in screams defiance at anything that singles me out, the little voice in my head promising humiliation if I persist.
When I do try to be open about my (and my daughter’s) needs and differences the voice regurgitates all the familiar comments: “What makes you think you’re so special?”
“Everyone’s a little bit (fill in blank with neurological condition of your choice) aren’t they?”
“Why do you want to invite discrimination towards yourself/your child with a label?”
“Oh everyone knows that’s not a real ‘thing’, doctors just make up these things so they can flog you medication.”
And perhaps worst of all, “That’s all well and good but if you don’t push yourself you’ll never get better.”
I’ve encountered all of these in actual discussion and feel as though I must be armed to the teeth with facts to counter them in order to self-identify as autistic or bipolar (still having to justify myself?) but, like many aspies, my brain freezes under pressure. I guess I don’t need to take on the responsibility for changing other people’s misconceptions. Learning to be honest and authentic – standing in my own truth – is more important right now.