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In the room her behaviour is reactive, as though I cannot think for myself – she cannot bear to afford me the space.
And that’s what it is about, space – who has it, who takes it and to whom it actually belongs. Amid the whitewashed walls, her occupation is an action that speaks: do not trouble your mind, sick person, I do not expect you to have the critical ability to understand your own needs. But does she understand her own? Isn’t this the problem? Can she even nourish herself?
The structure of our healthcare system seeks to divide. Just look at the testimony regarding the heartbreaking and unnecessary death of Aoife Johnston, the 16-year-old girl, at University Hospital Limerick. The inquest heard that the senior house officer on call was trying to manage 191 patients in the emergency department on her own that day and that the nurses were “overwhelmed”. It also heard that there was “no handover” of Aoife’s case when staff came on board the following day, on December 18th.
How do we move towards an idea of community and not competition for care? How do we achieve collective liberation for all involved?
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We can say we want it, but we cannot get it until everyone really wants it. Competition is not bad when a person can access care and choose where they go, but competing to stay alive should not be our reality. And it is.
The emotional and psychological burden of accessing care in Ireland is out of control and it is killing us. The only thing I can make of my care on that day is to conclude the person in that moment did not yet know herself. To explode at all, let alone at work, is a concern. But the repetition of it, that is my problem. To blame the person you are charged with protecting for a malfunctioning machine and your own lack of speed is, frankly, problematic.
[ Orla Tinsley: The health system is not meeting its patients’ needs ]
When the pressure in the machine rose, someone arrived and asked could they please hang fluid to try to flush out the possible clot. Yes! How much fluid? Yes! This was so easy going. May we? Yes! I consent. Thank you. Enthusiastic and constantly sought consent – that’s a winner.
In order to understand what consent is, we must not just read about it but practise it actively in our own lives. Not everyone makes that a practice because not everyone can. Our relationship to consent directly impacts how we deliver care.
This person does not like that I have consented to the saline and suggests removing me from the machine and starting again. “We would have to give you back your blood and take it again.” This, I explain, always makes me super sick the next morning. Can we please try flushing first?
This is what I would prefer. I say this with the kind of affirmative full stop that sends a message. Please, do not screw with my choice thanks.
It is all raised tones and voice strangulation.
In this healthcare structure, no one is supported and everyone is stretched, but what if we could support both practitioner and patient and teach people how to handle their stress and create a system where they are not placed in it in the first place?
We need a system where young patients are treated with as much respect and care as older ones.
Where knowledge is not the enemy.
Where critical thinking and listening to the patient is taught as an asset and is expected from the patient themselves where possible.
Where therapy is normal and encouraged for all healthcare workers.
Where tools to handle anger are deployed.
Where saying you are too stressed and asking someone to cover you is okay.
Where we have people to cover you.
In order to resist passivity, focus is required. Where focus is required, energy is vital. People with chronic health conditions, acute health conditions and those who have different disabilities may, for many reasons, be low on energy and we are the ones required to keep our finger in the dam.
Support comes from the outing of tragedy and the cost of awareness is the pimping out of the very people who are affected and perhaps traumatised in the media in order to make those in power take notice and do their jobs. The energy it takes to be the person who speaks is exhausting. And yet, it is the only option unless we give in to the culture of passivity that is expected of patients in healthcare settings by a system that may or may not get to them in time.
As the pressure rose in the machine and the possibility of a clot solidified – literally as my blood dried inside the machine – what I got stuck on was the option delivered from her mouth: we can give you your blood back and stop, or we can take you off and restart again with a new giving set.
It culminates with that person screaming across the room.
No one was to blame, until – apparently – it was over. “If only you had made a faster decision, in two minutes things would have been better,” she says. Because of the delay, I lost all my blood from the machine and they could not return it to me and so it was thrown out. I left with less blood than I arrived with. It is not the best situation, but it was the language being placed on it. I explained how this was the incorrect take – essentially blaming the person to whom the event happened. She said this was not the case, that I did not understand what she was saying.
And then, after some silence, she said it again.
And again.
The routineness of continuous treatment means picking up on who people are, how they behave in a crisis, and who and what they attribute blame to.
On that day, when she began yelling after I lost all the blood I was shocked. Another person tried to intervene. Things calmed, but, like clockwork, she started again, blaming my slow response while clotting. Even if, in this moment, this was true, it would have been bad but perhaps forgettable to have said it once. How people deal in and deal out communication is undoubtedly influenced by their lives so I have compassion for this conglomerate of moments I represent here. But now, as a patient, I have written an entire column about trying to come to terms with this traumatising experience.
We need to do better for everyone involved.
In Charlotte Perkins Gillman’s short story, The Yellow Wallpaper, a woman’s husband tells her not to write and therefore, then, in secret she must. When she does, she discovers the vast landscape of what it means to move towards freedom. It is thrilling and harrowing. When women cannot take the space to partake in their own recovery and purpose, damage occurs. The entire ecosystem is scorched. In fact, it can be a kind of madness to grapple with reality as it comes fully realised hurtling towards you without logic, compassion or context when your body is already fighting for life.
In order to have clarity in medicine, we must have a profound understanding of where authority lies and where it should lie. We must remember that as much as workers exist to support patients, it is inevitable they will also become one. We should be prepared for life to be ripped away at any second. Everything will bleed and maybe nothing will live.
When the patient is sedated, it must be the chosen will of the individual watching over them to do everything necessary to protect them. Beyond this, it must be the chosen will of the structure to hold both patient and practitioner as they move towards resolution – towards health. It must now be the chosen will of the new Taoiseach and his Government to create the kind of lasting radical change that matters.
We can only get it if we all want it, and we all want it.