I drove us home. Carefully. Blanking everything that had just happened out of my head as much as I could. Fortunately, driving is one of the few things I can do even when I am in a really really bad way. I can be at the stage where I can’t even get dressed by myself and am incapable of feeding myself, but I can get behind the wheel of a vehicle and be calm and competent. My life skills are very very uneven indeed. Cooking is at the bottom – some days I can barely make a cup of tea. Driving is almost at the top – I can happily drive long distances and navigate cities, even when ill. The movement of the car also calms me, freeing my mind from many of its difficulties.
Once I’d parked the car in the car park and we’d climbed the stairs to the flat, I collapsed. I knew my life was over. I had planned everything, sorted how things were going to be, based on receiving my diagnosis that day. I would come home, report to my small group of supportive friends who had helped me in the pre-diagnostic time, let my family know what had happened, allow it to sink in for a day or so, and then start the “Finally Knowing Me” blog, going public about being autistic with the confidence of a diagnosis behind me. People would finally believe me, finally stop telling me that “everybody gets tired” and that I was perfectly normal, because once a medic had told me that there was actually something wrong with me and I wasn’t imagining it, I’d be able to start dealing with it and building a new life with some support and understanding. I’d deal with all the “coming out” during December, and then start the New Year as the new me, with the new life.
But there was no diagnosis. I couldn’t tell anybody anything now. I was a fake. A sham. I had just worked out that I was faking everything all my life and spent several months getting used to the fact that I was different, but now it seemed that I wasn’t autistic enough either. I was a fake autistic too. Everything was fake. I had no identity. I started to doubt my own sanity. I was clearly deranged. The whole autism thing was me being a deluded fool. It really was time to throw the sunglasses away, grow up and get a pair of bollocks and stop acting like the idiotic “special snowflake” that I evidently was. My problems really were “all in my mind”. Stupid me.
I knew I’d have to leave facebook. I’d been living a lie on my wall for months and couldn’t do it any more. The whole thing was an act, and I no longer had the energy for it. I knew I’d have to tell my family that no, this was a false alarm, I thought I’d found out what was wrong with me, but actually it was all some fantasy and I really was the lazy failure of a daughter after all. I couldn’t make life work for me and I didn’t have an excuse either. I was just basically a pile of crap who didn’t deserve to breathe the air. The people on the evening news were right, I was a scrounger, a waste of space. I wondered why the NHS didn’t just provide euthanasia for people like me, since they didn’t want to provide support or help and I was clearly dead wood in society.
And even when I asked for help and went to the hospital, they just looked at the fucking accursed sodding bastard brains and the intelligence. Maybe I should beat my brains out against the wall. Maybe if I was properly impaired and permanently couldn’t talk any more I’d get help. Maybe if I did have a “proper physical illness” I could go to the posh new gleaming hospital up the road rather than the place with the plants growing through the wall. The state of the building accurately reflecting my own self worth. Those whose own minds tell them their lives are worthless get the feeling reinforced when they go for “care”, an indication of where they fall in the priority list. Who cares. I am a mentally ill probably-not-even-autistic. I contribute nothing to society, and society lets me know by providing me with nothing. I’m a fake everything. Being dead would be the best thing I could do for everyone. A release for me, a relief for everyone else, no longer a drain on those trying to prop me up, no longer a scrounger and a burden on society. Everything finally sorted.
Yes. These are dark thoughts. They are actually only the tip of the iceberg. I read memes on facebook that tell me to “be true to myself”. Seriously, that is not a good idea. Not at all. Part of “myself” wants to be dead, to do myself serious injury. This is not a part I show publicly most of the time. People don’t want to know about it. They look shocked, concerned. But this is part of my daily life, and has been since I was a teenager, maybe even earlier – I can’t remember. But it upsets people, and people don’t like to be upset. So I put on a smile and keep going. However, if I am true to that part of me, if I am “myself” like the memes tell me to be, then this will be my last blog post. But I know the memes are lies and platitudes and actually a load of rubbish. I know that the people who tell me that “you can do anything you put your mind to” are lying, and those who post “inspiration porn” don’t have the first clue what it’s really like to wrestle with your own mind on a daily basis simply to stay alive. Maybe they are “well-meaning”, but they are wrong. Very very wrong.
While I was realising that my life was over, and all these thoughts were racing through my head, my husband was doing what is probably the most sensible thing of all to do in such a crisis. He was making a cup of tea. He also posted on my facebook wall, e-mailed family members, and messaged those who had been supporting me to tell them what had happened as far as he was able.
I can’t remember very much about that afternoon. I remember thoughts going through my head that I couldn’t process, couldn’t form into words to talk about. I remember realising I had to do a group theory assignment for my maths course and that there was no hope. At that point I decided that the assessor had cost me my maths degree and had another meltdown – this time, at least, in the safety of my own sofa, so without causing further injury.
I also googled “clock faces autism” or something similar. Within two minutes I found a forum thread full of autistic people who couldn’t read clock faces. Why didn’t someone who was giving me an autism assessment know this? Did she know anything about autism at all? I later spoke to a friend who has autistic relatives, none of whom can read clock faces, and followed a thread on facebook that had similar information. Not being able to read clocks is, it seems, a classic trait of autistics.
My husband kept me alive through the afternoon. We went to bed. I slept briefly, then woke in the small hours, screaming, tearful, and terrified, as the walls of that horrible small room closed in on me over and over again. More trauma. The assessment. In the hospital. Where I’d asked for help. All it had done was added to my trauma. I screamed and rocked and my husband held me tight and I bit his arm. I was terrified. Nightmare. I never want to go back. I never want to see her again. Horrible horrible horrible.
The next morning, after three huge violent meltdowns in the space of less than 24 hours, I was calmer. My husband made me promise to stay alive. He went to work. He checked in with me at least once an hour on facebook. I agreed to stay alive until the end of Bergerac, the end of Lovejoy, the end of Murder She Wrote, and so on, channel hopping throughout the day, chasing familiar programmes around the television. There are those who question the value of social media, of television sets, who say people should get out into the world, turn off the electronic stuff, stare at trees and so on – maybe they have never lived hour to hour, programme to programme, scrolling through social media reading any damn thing, looking at any damn picture, just to stay alive.
The next night followed a similar pattern, except that it was quiet shutdown with tears rather than violent meltdown. The next day was the same. Living hour by hour.
Then came a turning point.
I wrote a poem.
I am not a poet. I don’t write poems. I never have (aside from a few rhyming ditties a year or so back, lost when the former blog site Posterous closed down). Weirdly, since I discovered I was autistic I have started, particularly when my words aren’t working properly, to write these strange poem-like things from time to time.
If I couldn’t come out as an autistic on facebook (for I was certain by now that I wouldn’t be believed – if a mental health professional couldn’t see it then there was no way that people on the internet would), then I could at least allow a bit of the real me to emerge. Just enough to soothe the pain a little. A bit like a cutter would make a few cuts and feel relief enough to get through a little longer. I’m not a cutter, but I know the need, and for me, the poem met that need. Expressing what I needed to say, but without needing to craft sentences of balanced prose.
I posted it on my facebook wall. It was the very beginning of the healing process. The line about not knowing who I am possibly didn’t make that much sense to some people when I posted it, but maybe does now.
An hour at a time
And freedom from this world and this nightmare
Not knowing who I am
Or why I am
To live right now
Is to count each hour
To keep breathing
Through the pain
I do not want to be here any more
But I am trying so hard to hold on
It is not easy