Thursday, 24 May 2012

Smells Like Teen Spirit

I never really expected to be a parent.  When I was younger, the presence of little siblings in the house made me sure I didn’t want to have any of my own, and once I was diagnosed with Crohn’s, I assumed it was even less of a good idea.  It wasn’t something I gave much thought to, really – I had enough to deal with.  And then I met the husband, who obviously started off as the boyfriend (actually, he kind of started off as the benign stalker, but that’s another story) and suddenly children were a subject for discussion.  And not just for discussion; I actually thought I wanted one. Obviously, it wasn’t as simple as that – there was my life expectancy to consider (short at that time); was it really fair to bring a child into the world knowing its mother wasn’t likely to be around much beyond its 12th birthday? I don’t know why I fixated on 12, but I did.  And what about the health risks? Would a child nurtured by my body run the risk of being sick him or herself?  We did the research; the answer to that question was no – Crohn’s is not generally a hereditary disease, though of course there are exceptions. I decided I wasn’t going to have an exception; I was going to have a perfectly healthy child, no matter what the medical profession told me.  In 1988, my then surgeon advised me that he thought I probably had two years left to live.  In 1992, I gave birth to the teen.  He wasn’t a teen then, obviously – that would have made for a very painful labour.  He was an undersized little wretch weighing just over five pounds and had all the requisite fingers, toes and working organs.  He was healthy.  And the fact that I can now refer to him as the teen (though not for much longer) makes it clear that I have survived long beyond his 12th birthday. 

I muse on this because we’re now on the night before my second surgery – the proctectomy – and as always before major surgery, I was unable to sleep.  My mind was racing; had I made the right decision?  Was it even responsible to put myself through another major surgery when I was healthier than I’d been in years?  All surgery carries risks and, ironically, this surgery was a more massive one than having the ileostomy created the year before had been.  This ‘finishing off’ operation that I was having to make sure everything went okay in the future was more of a risk than the one that had changed my life so profoundly just 13 months earlier.  But if I didn’t have it, there were other risks to consider.  Readers who have been with this blog since the beginning will remember the horrible mucus fistula that spontaneously formed rather dramatically in the early hours of a November morning.  My scar had burst open and the result had necessitated a second bag into which the smelliest, nastiest stuff had poured.  Fortunately, that had healed as suddenly as it had appeared, but not ‘til I’d spent six months dealing with its hideousness, and if I didn’t have the proctectomy, there was every chance that could happen again.  Also, with the rectum still inside me, there was always the possibility that the mild disease it suffered with already could increase and become nasty, evil Crohn’s at its worst, resulting in my needing the surgery as an emergency when my body was in a compromised state, rending the whole thing far more difficult to recover from.  There’s also a higher risk of cancer without the proctectomy, so all in all I knew it was the right choice.  It just didn’t feel like such a sensible decision as the night before I was due to have it dragged endlessly on. 

I’d written a letter to the teen a year earlier, the night before I had the ileostomy operation, but I felt the need to write another one now.  He was a year older; his life had changed from that of a boy finishing his ‘A’ levels to one of a young man halfway through his foundation course at Central St Martin’s.  He was on the path he’d planned to be on since he was tiny, and surely I should address that, as well as the general pride and joy I got from his existence?  Apart from anything else, there was that weird superstition that envelops a person at such times, at least it does if that person is me – if I wrote the letter, labelled the envelope ‘to be read if I don’t make it’, then of course I would be fine, and said letter would never have to be opened.  If I didn’t, however … well, obviously I would die on the table and all my beloved teenaged son would have to cling to, sobbing, as they lowered his mother into the ground, would be an out of date letter written about another operation entirely.  To a different, younger teen.  I tried to distinguish the second letter from the first one; clearly, he would find both when clearing out my bedside table and I’d hate for his memory of me to be that I was repetitive.  So this time I talked about how proud I was of him, how sure I was that he was on the right path, how I would be watching him from wherever I was, so it’s best that he doesn’t do anything stupid.  Quite possibly similar to the first letter, but hopefully different enough; it didn’t seem right to open the first one to check.  I sealed the envelope, put it in my drawer, and tried to find a way to occupy my brain until morning.  At about five, I gave up and got in the shower before wandering around the house slowly, trying to commit every part of it to memory; to give myself something to look at should my life flash before me in the next 24 hours.  I wondered if I should write a letter to the husband as well, but that seemed silly somehow – we’d had our lives together; he had 20 years of memories, that was surely enough for anyone. 

Leaping into the present for a moment, I should tell you that a few weeks ago, I was talking to the teen about how he’d felt when I was having the surgeries.  He told me that when I had the second one, the proctectomy, there’d been so much talk of what a big operation it was that he was actually sure I was going to die.  ‘Not really sure,’ I said, ‘Just scared, right?’ No, he told me. He was sure.  He knew I was going to die during that operation.  Absolutely knew it. I asked if he’d told anyone and he said he’d been too scared to voice it; to say it out loud.  The thought of my son, my teenaged boy, the little undersized wretch I’d given birth to all those years ago, being so sure his mum was going to die, yet unable to share his fear with anyone – that made my heart hurt.  I was shocked and upset and felt so guilty.  And then I remembered …

The day of the surgery, he didn’t have any lectures so he would have been free to come to the hospital with us in the early morning.  We had to be there by 7am, the operation was due to start an hour later at 8.  Only he didn’t.  I clearly remember going into his room, as he lay sleeping in a fog of boy smell (less offensive than it sounds – it actually nostalgically reminds me of growing up with my boy cousin) and bending down to kiss him goodbye.  He barely woke, grunting instead that he would see me later and then carrying on with whatever dream he was involved in.  He thought – no, he ‘knew’ – I was going to die; that he’d never see me, his mother, again, and he couldn’t be arsed.  Not only could he not be arsed to come to the hospital, he couldn’t even muster the energy to wake up sufficiently to say a proper goodbye.  What he swears he thought would be his last goodbye.  I got a ‘see you later, good luck’, grunt and that was it.  The next time he saw me, he’d be holding it together over my limp, lifeless body. 

He’s been a disappointing teen in many ways – he’s never behaved appallingly, rarely acted like he hates us, never even got psychotically pissed until he was legally allowed to do so.  He’s never hung with a bad crowd, brought home a girl we despised, got into terrible trouble at school.  He’s not been bullied or bully.  He’s always been decent and funny and lovely and has hardly ever given us cause for concern.  And now, here he was, making up for all of that with a commitment to teen behaviour that was beyond parallel.  Of all the teen qualities he’s never given in to, the one that he has is the love of sleep; he can sleep for hours, days, possibly weeks if he could find a way of ingesting food without waking.  He likes to stay up ‘til the wee hours, then sleep and sleep and sleep.  Even, it seems, on a day when he’s about to lose a parent. 

When I realised this, I questioned him about it – ‘you thought I was going to die, but you couldn’t even be arsed to come to the hospital to see me go to surgery, to snatch a few more minutes with my still-breathing body’ he looked at me kind of blankly.  ‘You came in and said goodbye’, he pointed out, seeming to think that was a perfectly reasonable response.  I’ll tell you this, if I had died, I’d be haunting him by now.  Moving things around in his bedroom just enough to freak him out, putting those letters I wrote in prominent places, messing with whatever designs he was working on, but most of all, I’d be making damned sure he never slept. 


  1. Very funny, Wendy; loved it :)

    1. Ah, the dreaded proctectomy – actually I didn’t realise this was its posh name, which is a disgrace as I teach anatomy & pathology! Your blog remains a continuing thought provoking event for me and the last couple of weeks hasn’t left me down. Barbie Butt HaHa! I must look at the forum more often as clearly I’m missing out on gut humour! As for the proctectomy I remember the ward sister was delegated to speak to me about having a permanent ileostomy. She sat down besides the bed, obviously nervous and rabbited on and on, to which I said ‘Yea whatever ’ (or words to that effect)! Being only 10 this was quite garrulous - but the reality for me was ileostomy had become a way of life over the previous two years and I simply couldn’t remember my life without it. She did seemed surprised at my quick decision but being so young I couldn’t have understood the full implications and anyway it meant more time off school - great! Obviously there’re no regrets, but your wonderful blog has made me ponder - what if I had said ‘No!’ Thank you as always - Richard xxx