Four months since my last post and decompression still hasn't really occurred. My spine is still coiled too tightly around itself. By banging my head against the keyboard I eventually typed out something meant to resemble a thesis (it has gold letters on the spine and I paid for it: isn't that enough? Say what? The chapters are supposed to be "finished"? Oh. I forgot that part). In a week's time I'll pretend to defend it and then pretend that I'm happy to resubmit the whole thing as I know I must, and pretend to be happy that I enjoy the whole field and the institution with its campus that has no decent coffee and is inundated with incompetent admin staff, when really, I just can't. I'm quite beyond feeling sorry for myself: most of what I am doing right now isn't myself, so what's to feel bad about? It's not my fault I forget things. I am wasting time, talent, life, all those things that shot to the top of my ludicrous list of so-called priorities after the cerebral blob was discovered several years ago. Somehow life has slipped down on that list and disappeared around a corner again, like, Look! real life (including Real Life: Normalcy of Job and Team Werk zealotry and Assets and H=A=P=P=I=N=E=S=S during two weeks' vacation time in economically exploited tropical countries, &c.,) is over there and it is waiting. It's peeping out from behind those McDonald's grease bins. Like, hey Listen! You're not living now...but you're about to.
Christ. Am I wallowing in my alienation again? Everything is now, so what am I doing grinding my face against the inside of my face.
I suppose I'm a bit deflated following a recent "mass lobby" of Parliament that I attended alongside scores of various brain tumour charity people, patients, carers, some political navigators, and an unfortunate but inevitable rash of self-important rich bastards who were pleased with themselves for pretending to care about people with brain rot.You! I call. You in the pearls. With the Tory hair! I think you flushed part of your heart down the toilet when you had that horribly painful shit that one time...
Here I am with my tiny blue head, right at the centre of the action, a bit clueless as to what I was trying to accomplish. Mostly trying to not return the anti-blue head glares from those few particular posh fuckwits. It's a good thing that the folk who actually work for the charities are decent: their hospitable and encouraging presence, alongside patients and some scientists and researchers doing the heavy work, is what made the day alright. Indeed, I do exaggerate about the poshos: there were only a handful of people whose eyes I was prepared to spike with my respectable-looking high-heels. I really did meet some good people, people with similar brain rot and similar experiences; people with severe brain rot and fifteen years' worth of incredible still-alive-fuck-you-tumour experiences. Those were bright points in the day. Thanks especially to Basia and to David.
The purpose of the day was to try to garner MPs' support and signature on an Early Day Motion calling for a little attention for brain rottees. The closing parts of the EDM refer to The Brain Tumour Consortium's Manifesto, and the most important point in that manifesto is that greater efforts must be taken to ensure prompt diagnosis of brain tumours in the UK. That means medical professionals need to be a little more on top of things: recognition of symptoms, fast placement of heads into diagnostic imaging machines, etc. I, for one, would not have received a diagnosis for several months after my first generalized seizure in the UK. Being dumped in the hospital by an ambulance made no difference - they took blood and asked if I was epileptic and I said no and they offered me a cup to vomit in then sent me home on my own. I was extremely fortunate that I already had a trip to Canada planned two weeks later, where they did things quickly and properly (and at no cost, it should be noted). Seizure? Immediate CT. Abnormality spotted! Take these drugs for now. MRI arranged... None of this sending the patient home to wait for weeks before a consultation about seizures (not even a scan) is arranged. Therefore: Dear MPs, please take note and tell the doctors and get some more protocols and machines and and time and money.
But wait! What's this? Has the NHS been stripped down to a pile of bare bones by the very vultures to whom we lobbyists did genuflect? Oh dear me. And that's precisely what made the day and the proposed actions feel incredibly futile.
I hear the guffaws and I know, I know. I do. Why go, why lobby, why play the game. Parliamentary politics - bah blah bah blah, etc., etc. But, other options, then?
I suppose that, Come the Revolution, brain tumours will cease to exist.
We won't even need efficient, free, top-quality healthcare because ALL cancers will be immediately blasted into the hearts of the counterrevolutionaries lined up against the wall.
I propose that the next attempt to "mass lobby" Parliament should be led by a qualified team of epileptic brain rottees who will march into the House without having taken their anti-convulsant medication and proceed to have a mass seizure on the hallowed Floor. And then we can also perform a seizure of power before they've had a chance to figure out what's going on. Yes. That is how a brain tumour invades this country's government. Unfortunately, I'm still somewhat short of energy for any or all of this. I'm still where I was at the start of this post: In a week's time I'll pretend to
defend my "thesis" and then pretend that I'm happy to resubmit the whole thing
as I know I must, and pretend to be happy that I enjoy the whole field
and the institution. And then I'm going to have to figure out a way of being that is not Real Life, but life that I like and that is free of all the rubbish I've been spinning and shaking in for too long - all the stuff that would feed the wrong kind of growth. Don't need it.