I went into hospital with 48 hours to live – I came out with a super power

When I was a girl, I was so easily embarrassed that when my mother sent me to buy toilet paper, I’d buy a box of tissues instead. We didn’t have automatic check-outs back then, and the idea that a shop assistant – even a lady – would have proof that I partook of the dirty deed was enough to make me gasp with horror. But since I became disabled a year and a half ago, I’d estimate that more strangers have seen my anus than Edmund White’s during his bath-house glory days. Rather than cling to the old ways, I’ve thrown caution to the wind and totally seized the initiative. “Can you look at my bum, please?” I inevitably greet the community nurses. I have been reduced from someone whose mother called her “The Camel” due to my extreme continence to someone who thinks about toilet matters for perhaps a third of my waking hours. The effort and attention other women invest in affairs of the heart, I devote to the monitoring of the private parts. There’s a Jilted John song called “I Was A Pre-Pubescent” and at one point the lyrics go “Fornication, copulation, menstruation, masturbation!” In my case, the re-write would be “Defecation, urination, catheterisation, constipation!” It’s not half as much fun. Though the door has been removed from the bathroom in order for my wheelchair to gain access (when people clock this, it’s like the moment in a film where the innocent guest realises that their bedroom only locks from the outside – a sure sign of something sinister going on), I remain grateful every day for the privacy my flat affords me. I went into hospital with 48 hours to live in 2024 as a relatively private person when it came to bodily functions, considering my milieu and morals. I was not the broad who happily left the door open while in the club toilet cubicle so I could easier chat to my friends. But after I came out of the emergency room, I was moved to a ward where I lived cheek by jowl with other women, in two hospitals, and pretty soon I learnt that fastidiousness was a luxury not for the sick and disabled. After my husband left during visiting hours, the commode became the dearest sight to me. “Make me proud!” one of my favourite nurses used to instruct me cheerily as she left me to my malodorous endeavours. “Can I take a photograph?” I used to get that in the street, a lifetime ago, and was always happy to pose for a selfie. Now it’s the request of the community nurses who want to keep an eye on how the latest pressure sore is doing; an increase in size can signal the move from stage 2 to stage 3, and that’s when the bone and tendon start to show through. They’re also known as “bed sores” which makes them sound so cosy, but they’re the bane of my existence. Like a potentially lethal game of Whack-A-Mole, a new one pops up the minute the old one has healed; I say “healed” but if you’ve had one, you’re more than 50 per cent likely to have another one right on that site sooner or later, as the skin which grows back will be far more fragile in that place. That place is often the posterior; I’m currently sporting one slap-bang on my sacrum. There’s no way that the nurse can check it out without getting an eye-full of everything else “Down There”, as my mum used to call it. Since public interest (well, a small corner of the NHS) in what were once my private parts, my intolerance for baby-talk with regard to the whole horrid business has increased greatly, and I was never a fan. Poo, tummy, wee-wee; at first these euphemisms heard on the hospital wards were guaranteed to have me fuming like a cliched colonel character; only in my case, I was Disgusting of Hove rather than Disgusted of Tunbridge Wells. But I came to understand why the nurses used them; they weren’t being condescending, but attempting to make light of what is a very grim business indeed for the neurologically disabled. One’s instinct at first is to apologise to these wonderful women for the indignity of having one’s wounds – or worse – waved in their faces, until you grasp that one of the qualities they possess that led them into this line of work is that they’re tough – and they’re not squeamish. They find the human body fascinating rather than revolting – even the bits most of us would rather forget about. “From the moment I found out about bowels – really found out – I knew there was no other part of the human body that I’d find so fascinating,” a young nurse once said to me with a dreamy look on her face. These are fearless wranglers of flesh and blood; they don’t want to sit in a classroom and practise on life-size plastic models of the internal organs. They want to get their hands dirty – and with me, they’ve certainly come to the right place.