I wiped my sister’s own vomit off her.

My sister had thrown up in her hospital bed. It went all over herself because she was lying on her back and couldn’t turn her head after coming out of a month-long coma. A doctor had used the phrase ‘muscle wastage’.

She’s 21, but she can’t speak. My sister had been throwing up on and off over the past few weeks — in a room alone and away from the nurses’ station. There were no devices monitoring her vitals and my sister couldn’t call for help.

When a nurse did arrive, they seemed startled; so were my dad and I. If we hadn’t been back to the hospital that night, how long would my sister have laid there in her own sick? How long would it have stayed in her airway?

But most importantly: who is going to ask those difficult questions — and push until they have an answer?

Getting answers takes a persistent team of people. My sister’s NDIS-funded support workers usually help her at home; now they come to the hospital every day. (“That must be expensive,” said one of the hospital staff.)

My sister has been there for 93 days so far. She’s bounced from the emergency department to ICU — where she spent a month in a coma — then the neurology ward to a rehabilitation centre. She wound up back in emergency, then a respiratory ward — after picking up one of six infections in hospital. Then back to rehab for a second try at getting home. (That must be expensive.)

My sister’s eyes are dry. One of her carers watched as a nurse from the rehab where my sister had already gotten sick sanitised their hands before going to put drops in my sister’s eyes.

“Are you going to use gloves?” asked the carer.

“I’ve sanitised my hands.”

“You need to use gloves if you’re going to do that.”

The nurse applied the eye drops with gloves on. One of them landed on my sister’s eyelashes. The nurse wiped it off.

“She was going to do that with her bare finger,” the carer told me later. “That’s why I’m here, to speak up because she can’t. I don’t care if I sound like a bitch; that’s my job.”

My sister doesn’t speak, but communicates through movement — using her hands for limited sign language or walking around the house. If she leads you to the TV or the kitchen table, she expects you to take the context cue.

She also has epilepsy; that means she has seizures. It’s landed my sister in the hospital before — sometimes in a state so bad my parents have been asked when the doctors should stop resuscitating. April had brought a several-year run of good health to an end when my sister was intubated in the ICU.

This is the bit where I tell you it’s taken me more than a month to find the words for this story, but I have made the time to write it to try and make lemonade out of this lemon of situation. I’m raising money for Epilepsy Queensland – a charity that does meaningful education and advocacy work. Check out the fundraiser.

The mean length of an ICU stay for seizures in Australia and New Zealand was just 45.6 hours in 2018. My sister’s coma was expected to last about a week.

But her care team couldn’t contact doctors for advice to bring her out of that coma. My parents would reintroduce the ICU staff to my sister as they changed every three days. Repeated requests for help bounced around a medical purgatory where no one took any responsibility. But everyone could agree that this was very bad — and that it was somebody else’s fault.

My sister couldn’t move or swallow when she woke up a month later. She still can’t get out of bed on her own — or eat food that doesn’t go through a tube into her nose. She doesn’t know why the tube is there, and it is hurting her nose. A psychologist thinks being able to eat may make my sister less depressed and listless. The brains’ trust is firing on all cylinders now.

Progress looks like my sister using her neck to lift her head up off her chest all by herself for short amounts of time. She needs two people to use a hoist — a piece of equipment larger than a person — to help her out of her hospital bed and into her wheelchair. Sometimes she waits in bed for hours for that help to be available.

Just sitting upright has my sister’s arms and legs visibly trembling. Maybe you know that jelly-like feeling — the one you’re left with after a run-in with a ruthless pilates instructor who has a calling as a dominatrix.

So if my sister’s arms are too worn out to make her signs, and she can’t take the lead to where she wants to go — how is she supposed to communicate? Anyone would find it frustrating and distressing to have no way to be heard and understood.

When I was five or six, I’m told my sister would regularly wake up very early in the morning and scream continuously for about an hour while I would hide under a table. I don’t have any memory of that, but you know what? She’s real for that; I’m starting to get it.

I visited my sister before she had moved to the rehab centre the first time — extending my trip through a several-day delay in finding a bed for her. On moving day, I joined her five-person entourage as my sister was wheeled on a gurney through a winding maze of corridors that passed through a university library.

The way back was far shorter. An ambulance drove her around the corner of the hospital campus and back to the emergency ward where she’d started. My sister had picked up norovirus in rehab; there was fluid in her lungs and her blood oxygen levels were dropping dangerously low. The infection sidelined my mum and two of my sister’s carers as well.

I made a midnight phone call to book an early-morning flight back to Brisbane — moving so quickly that my family didn’t know I was coming back to the frontlines until I walked in the door. Of course, absconding like that wouldn’t have been possible without some incredibly generous support and understanding from people at work.

I have always had the words and the patience to ensure I am understood, because I have always had to — even when that means saying things or making choices that are difficult. There is simply no alternative.

My sister needs help to be heard and understood when facing unacceptable circumstances, and it’s not always easy. This hospital stay is my sister’s best-case scenario — backed by her family and her team of carers — and yet she is still facing repeated and profound institutional failures.

She is far from the only person who needs help to be heard. That’s why I have always made — not found — the time for these people when they approach me. Sometimes that looks like dropping things, rearranging plans, or staying with them until they are done. Sometimes it feels like wiping up vomit that I don’t particularly want to.

And sometimes it sounds sinister.

There was a moment like that for me a while ago. And in those moments, listening means not pushing someone to label something we are both still understanding. There’s a silence; I sit in it with them and allow those gaps to yawn wide enough that they become uncomfortable.

They might need some time to find their own way to communicate — or work out what they want to share. Sometimes they’ll need an open question to help them find words for the unspeakable. We are in no rush; I take the time to hear them talk through their next steps.

When my sister is asked to make a choice, she is presented with physical options to grab onto to help her communicate her intent. What does being heard look like for the people in your life?

Maybe they want to be heard by others; I help them find those people and check in on their progress. Being heard requires someone to be approachable, make – not find – the time and take the responsibility to understand. But we know that sometimes those who should be accountable decide they are not responsible. That is not acceptable.

People are brushed off and weeks pass by. Meetings fall through and action items fall by the wayside. The concern that had crept in for me a while ago starts to simmer. I get another phone call about a confronting post made by a stranger online; other people are worried, too. Yet those who are responsible for understanding don’t appear to have any interest in doing so.

A question bubbles to the surface: are people being kept safe here? I manoeuvre to get time with people who should know, then repeat uncomfortable, unprofessional questions until I get answers. I meet for about an hour with someone I can’t stand, who tells me they have “never thought this much about this place before”.

I get closer and there are those silences again. Others who want to be heard face more resistance; one starts crying, another is called emotional. And then one night, I assess what I have found — putting together a timeline of who knew what and when.

I check the time: it’s after four in the morning and I haven’t noticed. I look at what I have gathered and accept that I know people are not being kept safe. I think about what that means for the community I am apart of — and for me — and put that into an email.

How far am I willing to take this, and what would I be giving up to make sure others are heard and understood? There’s a reason people keep coming to me to have troubling conversations. I take a walk to reflect on what I know and what my next move has to be. And it is difficult.

It’s seven o’clock. I check that my writing states what I have heard with surgical precision. I make room for clear and direct phrases like ‘psychosocial hazard’ and ‘safeguarding risk’. And then I ring a bell that can’t be unrung and walk away from people whom I no longer believe in.

I have had someone pick their own shit up off the ground and throw it at me. I imagine that’s what receiving that email felt like. And much like shit, it was always going to splatter. Uncomfortable feelings are dredged up that make relationships strain under their weight; some aren’t able to bear it.

People who have demonstrated little integrity choose to speculate openly about mine as the concerns I brought to them are taken ‘very seriously’. And yet the trouble continues and someone throws up from stress. I don’t have to wipe it off them — but I do make a point to be there when they contact me.

Was it worth it to make sure others were heard and understood? It was certainly difficult — with the time taken to listen and follow up, conflict created and sacrifices made. But it is always difficult, and it is always worth it.

To borrow someone else’s words: I am here to speak up, and I don’t care if I sound like a bitch. If you do, please consider this an irreconcilable difference.

Loughlin Patrick has relocated to Brisbane to wipe his sister’s own vomit off her and make sure she is heard and understood. He expects this to take “a while”.

You can learn more about epilepsy on Epilepsy Queensland’s website or donate to the fundraiser on Instagram.