Thursday, 26 April 2012

Who Loves Ya, Baby?

We got back from Barcelona on a plane ride of which I have absolutely no recollection.  There are photos that I don’t remember anybody taking, and of course the fact that I am no longer in Spain is also pretty clear evidence, but I remember nothing at all about that actual flight - valium coupled with the high of being with close friends is clearly a marvellous combination.  But we did get home to London, and when the Australian and the American had returned to their own continents, it was time to slide back into my normal life, without them.

So moved and overwhelmed had I been about the whole ‘watching my bag change’ interlude, that I found myself telling the whole gory story to anyone who’d listen, some of them three or four times.  ‘Hey, did I tell you …’ I’d start, and ‘Yeah, you did – a couple of times; please don’t tell me again’ was a regular exchange for me in those first weeks.  My friends responded in a variety of ways. One told me after a long and chatty lunch, ‘Look, I want you to know that if we were in some kind of emergency situation and you needed me to help, or even to change your bag for you, I would do it.  But under any other circumstances, really, no.’ Another joked that, ‘We’re all going to be queuing up now, booking appointments to watch, so that we can prove we’re just as good friends to you as they are.’  Nobody did though, not even the friend who said it.  Which was and is fine.  Extraordinary as those times were, I don’t really need anybody else to be with me when I change my bag; it is still a personal thing and I’m quite happy with the company of whoever’s on Radio 2 when I do it.  It’s usually Ken Bruce or Jeremy Vine, and neither of them seem to mind.  There are braver ostomates than I, who have made YouTube videos of their bag changes, and I’m sure they are very useful for people with new stomas, but I’ll be sticking to giving that information either verbally or in writing if you don’t mind. 

The only exception I would consider, would be my sisters.  I have two sisters – both very different; both equally extraordinary, and both the sisters I would have chosen had I been given such an option.  I’m the eldest, and my next sister was born, fairly traditionally, less than two years after me.  She’s the sister who validates my childhood; who tells me I’m not insane when I think I remember an au pair who regularly took us for walks in graveyards, and not interesting graveyards – not Highgate Cemetery to see Marx’s tomb, or Kensal Green to see Brunel’s final resting place; nothing like that.  She took us to nondescript spaces full of dead people and encouraged us to play a game where we read the tombstones of children and competed to find the youngest dead one.  Babies won every time, of course, and we’d go along with that game for hours on end.  We were just kids; kids don’t question such things, but I often wonder what the hell she thought she was doing.  Had she lost a child of her own, perhaps, or did she just have no idea what to do with a couple of little girls in her care?  She was probably only a teenager herself.  And then there was the au pair who must have been from Canada or the US, as every night when our parents went out, she’d shut herself in the dining room where she wrote, tirelessly and in pencil, scripts for Kojak (a massively successful ‘70s cop series that - depressingly – some of you may be too young to remember) which, she told us, she would only let them use if she could play the love interest she was writing for the lollipop sucking detective’s sidekick, Bobby Crocker.  I only know those things really happened, because we both remember them.

Then, when I was twelve, along came the littlest sister; my relationship with her was naturally more of a maternal one, and she grew up almost constantly worried and yet bizarrely fascinated by my health.  When I had a hole in my stomach that needed daily dressing, this little sister loved to come to my flat and change the dressing for me.  She was intrigued by the pus and gunk that spewed out of it, and was so gentle and careful as she helped me clean and redress it, it would almost make me weep.  We didn’t share a childhood, but we do share the same sisterly bond I have with my other sister. Sister one is the sensible, pragmatic type – she will sort out any practical mess I might find myself in without question; she understands how tax works, is a practicing solicitor, and makes her own puff pastry – a formidable human being by anybody’s standards.  Once, when we went on holiday to Italy together, and I ran out of painkillers, she drove all over the Amalfi coast in search of some kind of opioid, returning several times each day with various options, not stopping until she found something that worked.  Like I said; formidable.  But she’d be more likely to walk naked up Mount Everest in the dead of winter than deal with anything medically mucky.  I can’t see any circumstances under which she would think it was okay to watch or help me change my bag.  Maybe if I was doing the Mount Everest walk with her and I got hypothermia first, but even then I wouldn’t depend on it.

When it comes to littlest sister though, I realised I’d actually quite like her to see a bag change.  I suspected she’d be up for it, and I wasn’t wrong.  The first time we discussed it, husband, teen and I were staying at my mother’s, which is near where littlest sister lives.  I had to do a change and she said she’d like to come with me, but we’d reckoned without her dog.  Both of my sisters have dogs; the smaller the sister, the bigger the dog, thus my little one has a huge Rhodesian Ridgeback with the personality of a clingy child.  He’s a lovely dog, but he doesn’t like my littlest sister being out of his sight, and he wasn’t about to let her come into a bathroom with me unless he came too.  I draw the line at being watched by dogs, particularly one as affectionate as this – I didn’t fancy my stoma being licked or even just sniffed at.  There are boundaries.  So it didn’t happen that day.

A few weeks later, she was at my house, and her dog wasn’t; it was bag change time and she wanted to come with me.  We established the usual rules – if my stoma gushed, she was to leave – and into the bathroom we went.  It started well – I got everything set up, talked her through each item, took off the bag, showed her where it had been about to leak (hence the middle of the afternoon change), cleaned the stoma and was just putting the seal around the base when it did its worst.  Actually, not its worst at first; I’d eaten some jelly sweets, so what was coming out was fairly thick and easily catchable in the wipes I had a more than ample supply of.  And then it got runnier and I was getting through wipes fast and furious and she was just staring at it, almost awestruck, and I said, ‘You should probably go,’ and she said, ‘No way.  It’s amazing.  And it doesn’t even smell.’ We both giggled a bit then, and I was still catching runny output, by now on my second pack of wipes, but her attitude was kind of delighting me.  ‘It’s incredible Wend, the way it works; I had no idea.’ She said, ‘And it’s so cute; to be honest, I don’t know how you don’t spend hours at a time in here just watching it work.’ By now I was almost enjoying myself, despite being in a situation that usually frustrates me no end.  The thing is, I agreed with her.  Watching poo come out of the stoma is something I still find really fascinating, and while I wouldn’t spend hours watching it, I do sometimes go to the loo, empty the bag, and then if it’s still going, watch through the bag’s little window as it spews forth in varying consistencies and colours.  And the variety of those is amazing; truly.  It depends on what you’ve eaten, but it has crossed my mind that Damien Hirst is really missing a trick by not knowing anyone with a bag, or at least anyone who has been honest enough to talk to him about it in detail.  I once ate white fish, mashed potato and broccoli and the results were more visually compelling than a lot of things I’ve seen in the Tate.  The broccoli breaks up into tiny bright green flowers, which in this case were swimming in a thick, creamy coloured liquid, and I swear to you, to my mind that was art.  I don’t eat specifically to make the contents of my bag attractive, obviously, but when it does happen it’s a small joy in what might be an otherwise dreary day.  There are other things to remember as well – red foods can cause problems if you forget you’ve had them; beetroot or tomatoey pasta sauces can make you panic for a moment; longer if you’ve got no short-term memory, and things like sweetcorn are even worse in a bag than they are in ‘normal’ poo.  Before I had my stoma, a woman who already had one told me she could rinse off sweetcorn she’d already eaten and put it back in the can and nobody would ever know.  I solemnly promise never to try that.

Ultimately, of course, I got a fresh bag on and a third person had seen my entire changing routine up close and personal.  It was a different experience with my sister from the ones I’d had with my friends, and not just because of the stoma’s decision to demonstrate its every party piece that time.  It made me think about sisters and how if you happen to be lucky enough to have a couple you adore, they can enrich your life like no other relationships.  There aren’t many things that make me feel total abandon and pure joy, but laughing with my sisters is one of them. In the end, I think it’s about the history; the total understanding of a person who gets everything about you from the very beginning.  It’s about bearing witness.  Whether it’s to something as intimate and gruesome as watching your body secrete unpleasant fluids, or as strange and bizarre as a search for the youngest dead baby. 

1 comment:

  1. I haven't commented for a while - not because I haven't enjoyed your blogs (always brilliant)but I wasn't sure how I was feeling about it all. Your 'watch the bag change' experiences sent me into a long reassessment. My general policy has been no one will see my stoma until I'm completely senile and incapable. But hang-on, my older sister and brother helped me change my bag when I came back from hospital aged 10 - then my father use to do it, and of course stoma nurses at least 3, surgeons and a fair number of other medics have all had a go. But none of this compares to your brave, very brave experience. How liberating. The closest I ever came to show my partner was a photo of a partial prolapse a few years ago. Although her reaction was supportive I still couldn't bring myself to actually display it in vivo. As regards seeing the bag, I've always been terrified of anyone's comments but like Kez there's never been a problem with relationships. My closest and oldest friend always asks me how it is, and helps me to find a toilet when out and about. I love friends like that. Wendy I take off my hat to you, as well as to American and Australian - they are truely great friends and obviously love you for who you are. Wonderful!