Content note: death, ableism, discussion of medical procedures, #inappropriatemortality. All of this was written between the hours of 3am and 5am.
As with everything, there are good days, and there are bad days.
Saturday was a good day. They went out for Halloween. They went clubbing, embarrassed the club staff by making their systematic ableism apparent, they were carried upstairs in their chair like a monarch, reeking of not-yet-death and vanilla vodka. They painted their lips black, dyed their hair sunset purple, and wore velvet ballgown black as death.
Wednesday//Thursday//Friday was a bad day. The fluid that keeps their brain from rattling around inside their skull drained after hours of a torturous pressure headache. First in a runny nose, then through their ears, then through their eyes. They were afraid to sneeze, to blow their nose, to cry, to move. The pressure headache went with the fluid, the fluid should gradually replenish itself. Wednesday//Thursday//Friday was a bad day.
Most other days are divided into segments of good, not good, and very bad. Sometimes a day goes from good to terrible in the space of an hour. Sometimes they are unable to talk or make words for hours, sometimes they are paralysed for long minutes until I can worm my fingers under their scapula and push a tiny bone back into its home in their spine. Sometimes I am too tired to be comforting, too useless-sad to be company, too much of myself to be support to them. Sometimes I get home to be told they had been completely unable to breathe until five minutes ago. Every time I feel lucky and guilt-ridden to not have been there.
We have a date for the neurosurgery appointment. It was initially to be three weeks away, which felt far too soon, but their osteopath saw them today and had the neurosurgeon bump the appointment to three days away, which feels like far too long. The first date fell partway through a trip I was planning on taking to Melbourne. I can finalise those flights now there is no clash, but I can’t conceive of plans that stretch past Thursday.
A few days ago we had a fight that was not a fight, as they always are, about that very trip. A misunderstanding, a mutually incorrect assumption. I tell them I am planning to go on my own in November. I tell them maybe we can go together early next year. They say they don’t want to bank on being around that long, just in case. I say we could maybe go between Christmas and New Year. In light of recent news we will either never go, or we will move there in two years or so. There are no inbetweens.
Everything happens very slowly, and then it happens all at once. Two years of chronic pain before anyone started to listen. Nine months to get the narcolepsy diagnosis. Six months more for the JHS/EDS, the CFS, the IBS. Another two to recognise the parathyroid tumour. The heart problems, the brain problems, the spine problems. Official diagnosis of CCI, POTS, MCAS, chiari malformation, CSF leaks still pending. MS, critical heart conditions, malignant tumours, question marks. Acrynoyms and reports and appointment after appointment. A year of fighting for a piss-poor excuse for a disability pension from Centrelink that should have been granted on sight. Years and years to be free of abusive exes and abusive families, uncaring housemates and unthinking friends. Lifetimes to process all the things they’ll never have time for. Too long, too long, not long enough. And now, one appointment for the osteopath to confirm everything we already knew was true, another three before a neurosurgeon referral. A three week date becoming barely 3 days. We cannot predict the outcome of the appointment, but we know what the increase in urgency means.
They care more about how I’ll cope after than the fact that they’re dying. They care more about upsetting their friends, inconveniencing them. They worry more about me than they do about them. Until this point, dying has been an inevitability not worth being scared about. A matter of ‘when’, not ‘if’, and ‘how’, not ‘when’. A matter of months, not years. Until this point there has been one door, one option. Now that a second door has presented itself, now there is another option, an ‘if’, an opportunity to hope. Now they are scared. Scared to hope, scared to be disappointed, scared to fail. Now I am scared of this house,
Now there are things to do, and little time to do them. We don’t know if Wednesday will involve discussions and tests, options and questions, or anaesthesia and knives. We know anaesthetics barely work. We know that hospital beds and gurneys don’t come with memory foam. Everything after Wednesday is a question mark that we can only hope does not become a full stop. There are things to be done, bureaucracy to attend to,
I sit up all night instead and try to write. I play Forty Thieves on my laptop until I lose the distinction between one game and the next. I don’t do the reading. I don’t do the research. I don’t google the bureaucracy. I know how to feel for things in a body that are not where they should be, and I know how to know where to push. Everything is a simple case of pushing in the direction of the spine. Holding everything together. I know how this body feels better than my own, and I know, in small, poetic ways, what this body means, the language it speaks. I don’t know percentages, rates of survival. I know how to talk to paramedics and emergency registrar, nervous interns and arrogant doctors, I know how to sound like the authority. I know how to sound like the person who could, if need be, choose to flick the switch. I do not know how to flick the switch.
I know all their passwords, I know how to act as a Facebook Legacy. I know their bank details, their family’s contact numbers, the people I will need to speak to. I know the council rates and the averages of the gas and electricity bills. I know how much the cat needs to be fed, how frequently she needs to be treated for fleas, how to stop her from throwing up.
I don’t know how to be left a house in someone’s will. I don’t know how to have power of attourney. I don’t know how to announce someone’s passing. I don’t know how to organise a funeral or give a eulogy. I don’t know how to know if I need to know these things. I only know that I will do them if I have to. I only know that I could see no other option.
Right now, though, I can only seem to think about myself. Right now the main question on my mind is whether I will have to cancel any rehearsals, bail on script readings or developments, drop out of obligations, move house, move back home. Right now I wonder if this will slow my work down, stop me from finishing plays to submit to fellowships and awards at the end of the year. Right now I can only think “please, please just let it be next year if it has to happen. Please don’t let it be this year. Please let us see 2017 together, at least, at the very least, if you have any heart in you at all”. I don’t know if I am begging to them, to the doctors, to the universe, to a God I fought to stop believing in, to myself. As I think it I know that in 2017 I will say the same, that I will say it every second of every day until the universe or their still syncopating heart fails me. But I can’t help but think next year, next year it will be easier to deal with, next year is much more convenient for me. I feel guilty for expecting the end so soon, and guiltier for hoping against pragmatism that there will not be one.
We cannot talk about these things using the language of our reality. I hold their hand as they sob a mixture of tears and their brain into pillows covered in lurid zebra-striped towels, as they whisper admissions of terror, apologies, thanks, small declarations of a love and generosity that could burst this house apart brick from solid brick. I hold their hand, cradle their head, wrap my arms around their torso, draw nonsense on their back with my cold nose. The best I can manage an inappropriate joke, a crass reference to disability or mortality, a wry castigation about the selfishness of leaving me to fend for myself. A fond fatherly instruction not to do anything I wouldn’t do, like have a stroke, or rupture an organ, or be stabbed in the throat by your own rib head.
We cannot talk about these things using the language of our reality. They like that I joke. They find the pity and the sympathy and the sad eyes of everyone else exhausting. They find the premature mourning, the living wake, the too public grief, exhausting. They are too tired, too sick, to comfort others about this. This is, inarguably, the most about-them anything has ever or will ever be. They like that I will always joke, instead of sympathy or attempt to fix. They like that I will laugh with them all the way to their grave. They thank me, they tell me this is the best thing anyone could be doing for them. They cackle and snort and shriek as I push further, make jokes I would never dare repeat in front of anyone else. They say I am doing the best thing I could do, but I cannot help but feel I am doing this all wrong. There are no scripts for this, see, no pre-ordained narratives, no protocol. There are no right or wrong things to do, and we can only forge on as we see fit.
We cannot talk about these things using the language of our reality, so we talk about a TV show. My TV show, the Charlie Show, almost at the close of its twenty second season. I tell them that 2016’s season has already been too dark, too much tragedy has befallen the protagonist, the audience is getting overwhelmed or bored or pissed off at the constant dirge of every episode. I tell them that 2016’s season needs to have a happy ending, though there’s still two chapters left in which things can go wrong. I tell them that this, as a season finale, would be unequivocally jumping the shark. I tell them no one would tune in next year, that they have to pick up the slack, that my “brand” hangs in the balance.
I cannot tell them how much it frightens me, how much it hurts. I cannot cry to them, I cannot look to them for advice. But they are the very first person I want to talk to about everything that happens to me. We talk about ‘comfort in, dump out’, we talk about circles of effect. You comfort those at the centre of the circle of trauma, those in the circle one tighter than yours. They are the centre of this circle, the eye of this storm, though they are spinning faster than any of us. You comfort inwards, and you dump outwards. I am the centre of a circle, too, there are people who are supposed to comfort me. I make them sad when I try to talk about it. I’m supposed to see a psychologist, a pre-emptive grief counsellor, a qualified someone. I only want to talk to them. I only want to hear them say it will be alright, that it’ll work out, that it won’t be goodbye, that we will both live until we have had our fill, that I won’t lose a best friend, a family member, a person who is so much of me now. But I cannot ask them to do that.
So I talk to myself. I talk to this house. I talk to the cat. There are four of us in this house including her, but most days I feel like I live with ghosts. I talk to the floorboards, the ceiling, the mattress of my bed. I talk to Captain America, I talk to my characters, I talk to celebrities I will never meet. I talk to you, the blue-grey ether, the online noone-and-everyone. I talk to the me of two years ago who couldn’t see a way out of a friendship that was killing me. I talk to the me of four years ago who didn’t know he would be be a girl who grew up to be a man, who didn’t know he would have to do it all so quickly. I talk to the me of future years and hope he will know what to do.
I forget that they are twenty-three. I forget that I am twenty-one. I forget that I am supposed to be young and dumb, that this was the year I would have finished my undergraduate degree, that these are the years I am supposed to make mistakes without consequences. I forget that I am so young. I forget, then I remember. I remember that I have torn through ten years of life in four. I remember I have missed the chance to be reckless. I remember and I feel the need to grieve a youth I never really wanted anyway. Mostly I grieve the idea, I grieve that I never had the option.
We are both too young to feel this old, to know so well the whisperings of death.
I want to be clear. I wouldn’t change where and who I am for anything. I am wary of the trappings of playing with time, even in the imaginary, but mostly I would not have my life be any other way. I would not change the experience of becoming close to the most impossibly wonderful person I know for anything, I wouldn’t dream of swapping it for something simpler, with none of the hardships but none of the europhic joys. I have found here, for the first time in my life, a true home. I have found a person who is home to me. I have found what I can only describe impotently as my other half, my missing piece, and my saving grace. I tell them they have saved my life as much as I have theirs, and I cannot convey the magnitude of that all consuming truth.
In the end, no matter how much i want to stick my head in the sand, to throw a temper tantrum, to hide in my bedroom until everything complicated has gone away, to run and run and never go back–no matter how much I wish it would all stop, I know that I am exactly where I want to be.