CW: post contains in depth discussion of near death experiences, mentions of mental illness/suicide, discussion of hospitals, #inappropriatemortality. It is also over 5k words long and written by a sad and angry and sleep deprived man. 

My friend has a maxim: “you have to put on your own oxygen mask,” they say, “before you can help others put theirs on”.

What they mean by that is “you have to look after yourself before you can look after me.” I’m supposed to examine my own needs before I say yes to helping them. I’m supposed to be able to say no to things when I know I don’t have the capacity or that I don’t want to.

“Every time you say ‘no’ to me I’m so relieved,” they say, “because it means every other time you say ‘yes’ that you really mean it”. If I’m saying no, it means they can trust the integrity of my yes.

But, I think, it’s not quite as simple as that.

***

Any time I have to leave the house for more than a half day or so I start to get nervous.

If I’m out for the whole day there is a guilty buzzing at the back of my head that says ‘don’t leave them alone’. Until this weekend we had another housemate, they have a phone, they have other friends. It’s statistically unlikely that today will be The Day, I tell myself, every time I have to be out for any extended period.

If I’m out overnight I will lie down to sleep and think ‘but what if’. What if they need someone during the night–like that time they fell out of bed, like that time they knocked on my door at 5am, like that time they spent all night paralysed and barely breathing, like when I first moved in because they were on suicide watch, like that time in emergency where I had been just about to go to bed and if I’d gona five minutes earlier they’d be dead–what if they need me and I’m not home, what if there’s no one else in the house, what if the other housemate doesn’t hear them call. What if they can’t call out at all?

If I’m away for a couple of days I overplan. When I went away to Bundanon at the end of August I organised almost to the minute who else would be over, premade and bought extra food, instructed several friends on what to do in the event of an emergency, told the people I was going with about our situation, stressed for several days before I left. When I went to Melbourne for four days two weeks ago I didn’t sleep much the couple night preceding my flight, thought several times about cancelling, spent the whole morning until I landed and met with a friend for coffee with my heart in my mouth because I couldn’t stop thinking about what I’d do if I came back and they’d died.

***

There was a day a couple of months ago where I had to leave for a show bump in. I was already running late as they’d had some difficulty with something spinal, and I was anxious and snippy. The night before I’d had to leave a tech run early as they were having trouble with their ribs. Eventually I made myself leave, moderately certain that they’d be fairly stable for the rest of the day. I left the house, had a cry, got in an Uber and went to Kings Cross.

By the time I got out of the car they were posting garbled Facebook statuses in quick succession, incoherent and in agony and distress. I later found out that they had been fine until the cat jumped on them and displaced a rib, but at the time was convinced my leaving had been premature.

Eventually their sister was able to come over and help them out. I stayed out, finished bump in and dress run, only burst into tears once. We didn’t talk about it again until I had a panic attack in an Uber with them a week and a half later because I didn’t want them to have to try and get home alone.

The worst thing was that whilst trying to communicate how much pain they were in, they kept saying “don’t let charlie come home. He has an important day today and he can’t always come home to fix me, he has his own life”. They just kept insisting, midway through dying, “don’t let Charlie come home”.

***

These are some of the high speed calculations I make when they are in pain and asking for my help:

I weigh up my own energy levels against what I can ascertain are their energy levels (say yes unless the fuel light is flashing).

I weigh up my energy against their pain level (anything higher than an 8.5 automatically usually trumps whatever is going on for me).

I weigh up the severity of the situation. Can they breathe? Can they speak? Are they passing out? Can they move? Are they cognitively impacted? Is it the fun kind of cognitively impacted where they ramble about space and snakes, or the kind where their tongue doesn’t work and they can’t form multisyllabic words or recognise their own reflection?

I weigh up the fact that necrosis sets in after six hours of a joint being dislocated.

I weigh up the fact that a dislocated first rib can slip into the trachea and cause breathing problems, or cut off the carotid artery and cause TIAs (mini strokes) or brain damage.

I weigh up how long it takes to fix spinal dislocations (which are always tiny and hard to find, and also come in bunches) against how many dislocations are caused by an instability in the neck or spine (almost all of them).

I weigh up the severity against the likelihood that my intervention will help significantly enough. Some 25% of the time there’s little I can do. 7 out of 10 of those times I try anyway.

I weigh this all up against how soon I need to leave the house, if I have work to get done, if I’m on my way to bed. Anything higher than an 8.5 trumps my thing 85% of the time.

I weigh up whether or not they have asked against how hard I can see them trying not to ask.

***

A week or so ago they had a pretty bad episode. The last two or three weeks have been really difficult for them–at least once a day everyday they’ve been in some way paralysed, cognitively impacted, unable to breathe, or in level 10 pain. I didn’t know this because they hadn’t been telling me. But as I was there to see the problem develop this time I was able to offer help.

They got home after some appointments, having had to get from the busstop to the house alone. They couldn’t talk because their neck was fucked up, and before making their way upstairs they spent ten minutes burning letters addressed to their parents on the steps outside.

I hadn’t slept in two days at that point, I was exhausted and ill and emotionally shaky and having trouble processing information, so I wasn’t picking up on their needs properly, wasn’t understanding their signing, wasn’t capable of being emotional support. When we finally got upstairs I offered the one thing I was moderately capable of doing, which was fixing the neck dislocations.

They lay down so we could get to work. Slowly they became more and more paralysed as I was trying to fix the problem. They were angled funny but I wasn’t strong enough to lift them up. The door downstairs opened and they, having a flashback, started to panic. They gestured me to the other end of the bed as their partner, who had opened the door, came upstairs. As they were unable to speak I was unable to tell when they stopped panicking, and instead sat and panicked myself, trying to look like I had things under control despite drawing a loud and terrifying mental blank.

I kept trying. Nothing seemed to work. Eventually I realised they were either breathing very faintly, or not at all. I immediately assumed it was the first rib digging into their trachea again and tried to move it. It turned out the problem was that I had accidentally been pressing their face into the pillow. Once we could get them on their side they could breathe better again.

I had been pressing their face into the pillow. In my efforts to help, in every approach I tried, the whole time I had been making it harder and harder for them to breathe.

I texted a friend, saying “I think I just nearly killed Robin”. I pressed my face to their neck and said I’m sorry, I’m sorry, I’m so sorry. They whispered back that they were sorry.

***

Of course, not every time is like this.

For me, emotional labour is more taxing than anything else. I can administer medication, microwave heatpacks, adjust the air con, prepare medical marijuana, make mac and cheese, make sandwiches, help shower, reply to messages, turn on music, reduce tricky dislocations, call paramedics, stop others from calling paramedics, accompany to events, help push the chair up steps, all of that.

Fielding contact from parents, talking about abusive exes, decompressing about shitty Uber drivers, talking through ableism in the news, consoling through grief or fear or shame, are all things I find much harder.

Not always, of course. There are days when I can talk with them for hours about what’s going on with them, what’s going on with me, where we are in our friendship, what’s going to happen next, the awfulness that has happened before this point, hopes and fears about what will happen after this point. There are days when I will happily rant along about the abusive exes and the shitty family members and the neglectful friends and the ab

Most days, at least right now, though, about all I can do is listen, or simply coexist in the space with them. When I’m writing I become prickly and grumpy and struggle to be purely social for too long at once. I usually don’t like writing in the same room as another person, I need to be able to choose and control my space, and I need not to be distracted. And that’s hard, nigh on impossible, in a situation like this where any moment can become an emergency moment and I live with someone who is rarely with company (because being housebound and dying means often people will just not make the effort). I am learning, slowly, not to take on this burden by myself but I struggle not to feel guilty when I have to go a day not interacting with them. In any other living situation no one would care or notice if I holed up in one room for days at a time or didn’t sleep two nights in a row, but my role in our space requires more responsibility and accountability. When you only have to look after yourself, prioritising is far less complicated. When you also live for someone else’s wellbeing it gets a lot harder.

And I know, I am told–by them, by friends, by my family, by professionals–that it’s okay that I can’t always be the one to do the caring. That I don’t need to be everything, that I can’t possibly be everything for someone. But I can’t help but feel never enough. I can’t help but think that the things I am worst at are the things a best friend is for.

***

The oxygen mask metaphor is useless because ‘want’ doesn’t enter into that situation.

When I am watching a friend paralysed by pain, struggling for breath, unable to form words, scared and distressed and dying, ‘want’ does not enter into it. There are things I did not, do not, and will never want to do. There is the nauseous buzzing in my fingertips at the memory of the time they were wedged between the inside of their shoulderblade and their ribs. There is the shudder down my back at the sensation of their floating ribs moving beneath my hands, or their first ribs, or the tiny fragile bones at the base of their skull–the ones which could kill them, or paralyse them, if I move them too far the wrong way. There is the tired panic of the memory of picking them up off the floor or holding their head up while we wait for paramedics, or finding ziplock bags for the tissues their cerebrospinal fluid just leaked through their ears onto. There are things I have done and that I do that I do not want to do again. But I will do them, because ‘want’ doesn’t enter into it.

Whether or not I want to do those things doesn’t matter, because what I want is for them to be alive.

In those moments it is not the same as being given a choice to hang out or not, or make dinner or not, or go to an event or not.

In those moments my oxygen mask is already on, has always been on–in those situations my ‘oxygen mask’ is a set of lungs that have never been nearly punctured by a rib bone. In moments of life and death, the sureness of my being alive means I already have a mask, and that I can help whoever the fuck I want without thinking of whatever minor concern I might have.

If I have to give an honest answer each time I’m asked to do something or help with something or simply be there, then I have to be able to rely on my affirmative answer not being questioned, the same way my saying no would not be questioned.

***

After they came back from near death on the futon they went back to chatting and joking as best they can, trying to make light of the situation. After a few minutes I excused myself, saying I had to duck downstairs for a few minutes. I aske to bum a cigarette but they only had one left.

Fifteen minutes later our other housemate found me still heaving and sobbing on the concrete steps to the courtyard, and asked if I was okay. I said I was, and they said that I didn’t look at all like it. I tried to explain the situation, how I think I nearly killed them, and they told me it sounded like a rollercoaster of emotions and then went up to bed.

When I came back upstairs we had a few minutes alone as their partner went downstairs to make tea, and I lost it and cried all over them, unable to stop saying sorry–for nearly killing them, for crying on them, for dumping my feelings on them.

As it turns out, they told me, had I not been there, they definitely would have died, so the idea that I could have accidentally killed them is irrelevant, as my inaction would have been much worse.

As it turns out, they were glad to have me cry all over them, because it’s comforting for them to know that I’m as scared as they are. As it turns out I’ve been consistently swallowing or concealing my emotions in those moments and it hurt them to see every time I did it. As it turns out I wasn’t supposed to be perfect and professional.

That night I slept soundly for the first time in about a week.

***

There are times when I have to do things I neither want nor am capable of doing.

A couple of days ago we went to emergency again. This time Prince of Wales, as their neurosurgeon instructed them to come straight to her next time they were in danger.

I’m on the phone to my dad when their partner comes downstairs to fetch me, saying Robin needs to go to Prince of Wales. When I come upstairs they’re moving alright, if stiff, and can’t talk. We spend a tense few minute discussing how I’m supposed to get the ambulance to take us to POW when the closest hospital is RPA. They scribble in a notebook that I don’t have to do this if I don’t want to. They scribble out that they love me and I start crying and tell them not to say that. They scratch that out and scribble instead that they hate me.

We call 000 and then get ready for the ambulance, pulling together bags and physio tools and scans and clothes and medications. The main paramedic, Joseph, is kind and friendly and funny and desperately handsome. He and Robin joke to each other the whole trip, Robin writing things down and him chuckling at their grim sense of humour. I keep thinking that this is the worst possible time for me to be doing this–I’m meant to have an audition tomorrow morning, I have a wedding in the afternoon, I have so much work to do–then feeling guilty for making it about me.

We whizz through triage and the paramedics explain the situation, then leave, then we’re all but left on our own. The hospital bed, given it has no memory foam, keeps making them spasm, which none of the nurses know what to do with and will just look to me to fix. When a nurse tries to help me shift them up the bed he makes the mistake of lowering the top half of the bed, which sets them spasming again and tips their first rib into their throat. He looks helplessly at me as I try to keep their head stable, clear their airway, get them breathe, stop their back from arching, stop them from going rigid, try to work out if they’re breathing yet, if they can breathe like this, if they’re breathing now, how about now. “Get a doctor,” I tell him. “They need oxygen,” I tell him. He doesn’t get a doctor.

This happens a few times, progressively worse every time. The left side of their face goes slack then starts twitching. They lose control over their limbs. They start to cry, terrified and breathless. They start foaming at the mouth, and choking on saliva. The only thing left to do is yell. I yell a few times for help, eventually loud enough that some six hospital staff members come rushing. They are given an oxygen mask, which seems to help, and I try to explain what’s happening and how it’s caused by the dislocations and that we need xrays, we need scans, and we need their neurosurgeon. A doctor spends a few minutes asking me “how [she] managed to acquire the medical marijuana”, something unbelievably low on my list of things to care about. I piss off the nurses by explaining that no one has done fuck all since we got here but ask us the same questions several times over.

We eventually see a doctor who actually apologises for talking to me over their head, who doesn’t mind that I’m crying through my words, who organises muscle relaxants to help with the back spasms, who gets in contact with the neurosurgeon and tells us she can hopefully see them early tomorrow morning–which means we have to stay in hospital overnight. I start organising for a friend to bring some of their memory foam over, as well as food for me as I hadn’t eaten since lunch, and then we wait to be taken to a ward.

Eventually, just after they regain some speech and movement, we’re taken to the acute spinal ward. The nurse wheeling the bed doesn’t notice that their hand has fallen out the side and knocks it hard against a door. The nurse from acute spinal takes over and suddenly everything starts going far more smoothly. A group of nurses make the risky transfer between beds as best they can then I set to settling them in the new bed, removing extra blankets and setting the pillows around their neck.

The ward is quiet, as it’s now after 1am. Except for a man somewhere on the other end of the room who yells “help me” every few minutes. We are given a large green emergency button like something out of a game show that, in light of the yelling man, is less reassuring than it could be.

When I mention that a friend is coming with some things, I am told I’m not allowed to stay overnight. I explain that I need to be with them because I know how to fix the spasms and none of the nurses on staff do. They tell me it’s protocol that no visitors are allowed in this ward outside of visiting hours. I tell them “well their neck’s going to go again and they’ll start spasming again, and none of you will know what the fuck to do and they’ll die, but that’s fine, send me home, sure”.

One of the nurses then asks me “are you [her] mother?”, as if I could only possibly care that much if I were.

I tell them “I’m the housemate. I’m the primary carer,” and they tell me they’ll see what they can do.

While we’re waiting for the friend with the pillows Robin tells me I should actually go home and sleep. As soon as I hear it from them I know they’re right, and I have to, and I’m so fucking grateful to them for thinking of my health even as they’re this close to dying. We agree that I shouldn’t come to visit tomorrow, that I need a break and other people can make sure they’ve got company.

The friend with the pillows arrives with pillows and McDonald’s, and we feed them chips and vanilla thickshake, then the friend drives me home. Another friend is waiting up when I get back to the house and we have a smoke, and chat, and both go to bed.

I cancel the audition, and I make it to the wedding. I tell my friends not to call me unless it’s a major emergency, and mercifully no one does. I check Facebook sometime during the reception to find they have been sent home to wait until the neurosurgeon can see them properly and nearly cry with relief. I dance and I drink wine and I try to breathe everything out.

In the meantime, they see a nurse who is actually useful and yells at various other staff members on their behalf, they message friends, and they send me a picture of the final page of a Mr Men book, Mr Muddle, that I had bought them and changed the title of to Mx Congnitive Dysfunction. I don’t realise until a few days later that the picture was intended to be their last message to me if they died.

***

And I’m furious, okay? I’m furious that so often it is only me, and only them, making any effort to keep them alive. This person who so many people have benefited from, been helped or served by, this person who has saved or enriched countless lives in our circle of friendship, and a large bulk of our friends can’t be fucked to do a single bit of learning or listening about what they need, what can be done for them, what they can and can’t do.

Friends stay over and are confused or disappointed that the house is no longer constantly stocked with food for guests, friends stay over and mistake their generosity for mine and eat my food, friends stay over and quietly demand to be given space to crash, in a house that does not have room for extra, inconvenient bodies that sap resources and energy. We are an exhausted man and a dying person, and we are both multiple kinds of mentally ill, and both in some form or degree of chronic pain, and we love having people around and I love when they have company, but neither of us ever have the energy to “host” or organise. It will always end up being me, though, because our friends see me as the one who has it together.

There is a running joke amongst people who know me that I am “everyone’s dad”–because I can’t not care deeply about everyone and everything, because I worry constantly about the people in my life. But when that support is just expected of me it becomes something I resent giving.

Our friends don’t seem to understand that I only have so much room in my heart. I have a lot of people I feel in some way responsible for, and people who I wouldn’t dream of not supporting, but that space is not endless and it does not have room for the needs or the gripes or the anxieties or the fucking feelings of mutual friends who want me to comfort them about what is happening to the person who takes up prime real estate in my mind.

Our friends don’t understand how serious this is, how comprehensively their illness impacts on their life. Our friends don’t understand that they can’t just “get ready quickly like everyone else”, can’t just “hurry up”, because at every single moment their body is pulling itself apart. Our friends don’t understand that no plans can be concrete because the nature of their condition is never stable. Our friends don’t understand that an unreplied-to text, or a perceived annoyed silence, or a miscommunication, or flaking on plans, or not being invited to plans, is not about them at all. Our friends don’t understand what kind of factors need to be in place for an event to be considered “accessible”. Our friends don’t understand how fucking impressive they are for communicating their needs and boundaries as well as they do considering that their body and their brain are destroying them from the inside out.

Our friends don’t understand that, just because I can do all the things I do, does not mean I should always have to.

I’m not a carer. I’m not trained or employed. I am someone’s friend and housemate and I support them to the best of my ability but I’m only as effective my own problems will let me be.

I physically can’t spend half an hour to an hour everyday trying to put someone’s spine back in, I can’t make it to every doctor’s appointment or social event, I can’t always push the wheelchair uphill, I can’t always be around to make sure they take their medication–but I’m the only one with the skillset and knowledge to do most of these things, so I’m the only one who does.

They have never expected me to do it all. They don’t like it when I do it all any more than I do. It is beneficial to neither of us if I do all of it. And yet our friends, and their friends, seem to see my supposed competency as a free pass for them to never have to be the one in the emergency situation. “It’s such a relief Robin has Charlie”, “it’s so reassuring to know Robin has you”, “Charlie is your official carer, right?”

And then my friends: “so wait you’re a full time carer now?” “I just don’t know how you could do it, I never could”, “but you don’t even get paid?”.

No one seems to realise that it’s not enough to just show up. If you care about someone you do the learning, you do the work, you do the things you don’t always want to do to whatever is your capacity, because the other person will do so in kind to the best of their own ability. If I were choking on a friend’s dining room floor they wouldn’t say “look, Charlie, I’ll call you an ambulance, but you’d better make it worth my while, my fee is $25/hr”, so why the fuck does that seem to so fundamentally change when the problem is chronic and degenerative?

People are constantly worried that I’m being overtaxed, or taken advantage of, by the person I’m looking after. And I’m not–I’m being taken advantage of by our selfish, ignorant friends. Who expect me to have it all covered. Who have never asked nor tried to learn how to reduce the trickier dislocations. Who haven’t bothered to look into or research their conditions, who barely listen when the conditions are being explained to them. Who don’t listen to Robin explaining how best to push the wheelchair in ways that don’t either hurt them or make them feel like a child in a stroller. Who actively treat them like a child, or like a burden, or like their problems aren’t as bad as they’re saying. Those are the people who truly exhaust me. Robin needs a lot of care, but they have never, ever, not once left me alone.

Robin would never, ever say any of these things. Probably they’d never think them, because their sense of their own worth has been decimated by a long procession of people who have told them that they are “coercive” or “abusive” or “irresponsible” for asking people for the thing they need to continue to be alive. They wouldn’t say any of this, and I don’t speak for them in saying it. I can say it, though, and I’m saying it because I’m watching my best friend die and, just like the ER, sometimes I seem to be the only one yelling about it.

And that’s a blanket statement, too. We have several amazing, caring friends who cook for us or offer us money or visit the hospital or do any number of lovely things for us. Those people know who they are and know that I’m not speaking to them.

So yeah, you put your own oxygen mask on first, but then you turn to the person next to you and you say “what can I do to help you”. Or you say “I don’t want to help you, I just need to help me”, and then you don’t take the fucking credit for that person getting the mask on by themself.

***

So here I am. At ground zero, the debris flurrying around me. Wondering if it’s not easier to let myself be buried under it too.

Here I am, the plane in freefall. Wondering if I stomach putting my own oxygen mask on when the person next to me didn’t get given one at all.

And now we’re just the two of us again. And now we’re in the house alone and I’m too scared to sleep in my own bed across the courtyard in case they need me in the middle of the night. And now I’m the only one who can do the appointments, who’s around to do the medication or the joint relocating, or the company and support when everything’s too much. Now we’ve lost another housemate and burned out another friend, and now I’m expected to handle all the difficult shit on my own again. And this time I know, unequivocally, that I can’t. I can’t do this on my own any more. I’m so grateful to anyone who is around or stays over, even if it somehow inconveniences me, just for the relief of not feeling so alone. And there are people–there are friends and partners and casual sex friends and the occasional New Zealand aunt. But the danger, the life or death, the oxygen mask moments are too much for me to bear alone.

Today we went to the osteopath, then had coffee in our favourite cafe, and everything was normal.

It’s going to be okay, because they take care of me, too. They have housed me and financially supported me, they have been a point of stability when I’ve been spiralling out of control, and a comforting presence when I’ve been at my lowest. The first time I had to be taken to emergency for myself, about two months ago, though they weren’t able to be there for it, they called the hospital to yell at them for not giving me a discharge letter nor telling me how I got there, then gave me a massage and held me and reassured me that it was okay and I wasn’t a bad person for making a mistake.

We take care of each other, as best we can, and I think that’s what people misunderstand the most.

***

Last week I took a four day trip to Melbourne.

On the plane, I watch the safety demonstration. The flight crew demonstrates how to correctly use an oxygen mask. “Please ensure your own mask is correctly put on before helping children or others.”

The couple next to me are nervous fliers. They grip each others’ hands all the way through take off, and well into the flight. I imagine them gripping each other as the plane goes into freefall, checking each others’ masks and lifejackets. I can’t stop myself from smiling, because I am alone, just me, and it’s the first time in a long time that I know for certain I would put my own mask on first, and not even think about anyone else’s.

Advertisements