My gold-plated catheters
I am able to start to pee. I command the gates to open and they open. The citizens of New Bladdersburg begin to leave the city just fine. But at some point during the exodus the gates spontaneously shut and a bunch of people are trapped in the city. I look at the gate guards and it turns out that they’re cardboard cutouts, their armour is made of clouds, and their swords are bendy plastic straws.
The problem, then, is that I cannot empty. This is an inconvenient situation because the city is constantly filling and only being able to empty half the citizenry at any one point means the city effectively is left with half its usual capacity. When we overfill the city the sheer population forces weavers and leatherworkers to squeeze their way uncomfortably through the portcullis. Worse, the longer people are stuck in the city the more angry they become. Before long local tavernkeepers are smashing tankards over the heads of the nearest nobleman.
So I use intermittent catheterisation to empty the bladder fully. The task is challenging. Imagine sitting on your chair with a dartboard sat against your chest facing away from you. You take a dart in your dominant hand. Your task is to, without being able to see the board, place the dart onto the bullseye. The bullseye is thinner than the width of a pencil. If you miss, you have to throw the dart away and pull out a new one. You only get four darts to last each full day and night, so if you miss you’re a dart short for the rest of the day.
The challenge is considerable. But I am nothing if not motivated by a challenge and so I put the work in. The journey involved frustrated tears, a lot of wasted catheters, and an infection, but I made it. Now I can hit the bullseye every time in total darkness.
The catheters I use are from Infynachic. Each catheter sits within an individual pink plastic container, hermetically sealed, ready for use. I can open the case with one hand, my thumb popping it open like flicking the lid off a pen. After sterilising my hands I can use one hand to manipulate the case and the other can be reserved for the catheter itself. Infection control is everything and my catheter game is now tight, almost habitually so.
My phone rang. It is unusual to be called directly out of the blue and the only people who do so are members of my medical team, now numerous enough to fill a softball squad. It is a nurse from the new catheter service. They’re now managing the catheter distribution to patients and I have been flagged by the system because… get this…
My catheters are too extravagant.
The NHS catheter service has been tasked with reducing the expenditure of my catheter use to 33% of what it was previously. The nurse who delivers the news is ready for me to be upset, to protest, to fight. I do none of those things. This nurse does not write the catheter policy and cannot change it. I also honestly have no sense of entitlement over any of what they have done for me. That I live in a country that can give me access to catheters at all is truly incredible to me. I’ll take whatever they can give me.
I understand entirely that the NHS is strapped for cash. I understand that my catheters are paid for by the taxpayer and I understand the need to use that money effectively and economically. I understand that I, as a disabled person, should not have access to devices that waste taxpayer money.
But… I also see that 350 UK individuals and families now own a combined wealth of £772,000,000,000, enough to supply every patient in the country with catheters for 5000 years.
Something has gone badly wrong.
The nurse shows me three different catheter products to which I can switch. The one that she prefers for all her ‘younger’ clients… I’m glad I wasn’t drinking tea or I’d have spittaked all over the couch… was small and in a plastic and paper pouch rather than a pink cigar case. I’m immediately crestfallen. The look of the thing is of a medical device rather than my current catheters that could be mistaken for disposable vapes at first glance. The packaging looks fragile, with a paper back that could be easily punctured. I’ll need to take much greater care with how I store them when I’m out with friends.
The nurse tells me that, really, I should be using two each day instead of four. My breath catches in my throat. This is a direct and sudden threat to my quality of life. When I don’t catheterise I need a toilet every hour and it makes going out much harder. I can just about manage using four per day, and that’s on a good day. There’s a moment of tension in the air as I make my case. I speak softly, aiming to articulate my argument dispassionately and without triggering this nurse’s defences. I must refrain from becoming emotional, from becoming too directive, from pleading.
The situation is complicated by being trans in a hostile country. As my powerlessness becomes apparent I become extra careful with my voice. I curse my decision not to wear makeup for her visit. I cannot risk her knowing I’m trans, though I’m almost certain she learned that from my notes before she even arrived. If this nurse doesn’t like trans people… I try to remain calm. I don’t get to choose what happens next.
The nurse finally tells me that she is happy for me to remain on four per day and I feel the relief indicative of my disempowerment. It might appear like a fairly reasonable conversation to an outsider, but I want you to imagine being in a situation where your immediate and future quality of life is suddenly entirely at the mercy of someone you have just met.
I chose the catheter for her ‘younger’ clients and if this was a selling strategy she had understood me pretty well. She lets me know that I can switch slowly, with three of my delivered boxes of catheters being the new budget devices and one being their sleek sophisticated cousins for a little while. At some point, though, we will switch entirely to the cheaper alternatives.
I get it. I understand why the switch was needed. I understand how privileged I have been to be able to use the better option for 18 months. And I can and will switch at the nurse’s behest. But in a country where a handful of people have such extreme wealth it is somewhat galling to be told that, as a disabled person with brain and spinal cord lesions too numerous to count, as a wheelchair user, as someone who needs these devices to live…