I’m not sure when I started to hate my body, but it certainly is something I’ve never not known.
What started out as a desperate desire to have a different body – one that worked – turned into something much more. It turned into a deep aching to rip whole body parts off, and replace them with new. It was a byproduct of many things; being born with congenital deformities one aspect. Being born female another.
I was born with VACTERL association, but to look at there isn’t much to notice. I don’t have particularly obvious deformities, the only real evidence that I was born with missing bones and malformed internal organs being the scars on my body. The malformations were there though, and caused such a deep loathing of who and what I was that I often struggled to be happy.
My particular issues – sacral agenesis, imperforate anus with recto-vaginal fistula, bicornuate uterus and trachea- oesophageal fistula (TOF) – can be quite damaging socially. Not the TOF so much, as it only resulted in socially acceptable ailments such as breathing and swallowing difficulties and a hideous cough. It was the others that wreaked havoc with my psyche. The sacral agenesis and the imperforate anus meant quite a few things. Firstly, I lacked the musculature and related nerves to properly go to the toilet. Secondly, having a recto-vaginal fistula means one thing; I originally evacuated my bowels through my vagina.
These are clearly two aspects of life society as a whole can’t deal with. People who soil or wet themselves deserve mockery, and it is assumed that sheer laziness is the root cause for the incontinence. No-one understood how people couldn’t feel the need to go to the toilet, nor could they understand that people, such as I, couldn’t actually feel the faeces as it left the body. This inability of people to understand the issues of sensation those born with imperforate anus often face, led to a prevailing narrative of choice with regards to soiling. And people who chose to shit themselves are obviously dirty, disgusting individuals.
No-one seemed to stop and ask: would people, children and young adults really choose to shit themselves?
I mean – if they had asked themselves that they would have realised the answer was no. No-one would choose that, it’s not a choice; instead, it’s cause for despair. Despair, because just as you’re playing with friends in the yard at Kindergarten – you shit yourself. When you try to involve yourself in games with your four year old peers – they refuse citing the stench you bring to the game.
When you ask to go to the toilet as a child in primary school, you rush to the toilets only to find that your knickers are smeared with shit, but when you sit there and sit there and sit there, nothing bloody well comes out. When you’re winning the 100 metre sprint at the athletics carnival, and suddenly your knickers have a lump in them, who can you turn to for help? No-one, because people who shit themselves choose to do it.
I realise now, that this was directly caused by a level of faecal impaction that has likely distended my bowel beyond repair. When I was operated on in 1975, my parents were told that I was fixed – as all parents were in those times. It is only recently that some doctors have started to be honest and let the parents of children born with imperforate anus know the honest truth. That a person born with an ano-rectal malformation is never fixed. It is something that has to be managed.
I was not given opportunities for management. Instead, I was punished and shamed for being who I was.
I should have been fixed, and when I clearly wasn’t there was only myself to blame. My parents, who by the time I was eight, were so evangelical in their religious beliefs, could not see that I needed medical assistance and so, I was left to shit myself and be punished and shamed for who I was.
I had what my whole family referred to as a ‘poo problem’. I was afforded no privacy, all who knew our family knew of my ‘poo problem’, and many people thought it appropriate to ask about me and if I had finally become continent while I was in the room. I wasn’t asked, of course, I was afforded no dignity, no control, no voice in the story. I came to see myself as a problem that my family had to endure, as someone who should just try harder to be better and more perfect.
I came to see the silences in the middle of the night, the time when I was left alone without criticism, without question, without recriminations as a time of solitude. But just as the dawn of a new day came so too did the reality of my life; a reality in which I shit myself, hated my body, wished it would work, and I knew it didn’t.
I was also constantly reminded of the level of putridness my body held, all because of the simple fact that vaginas and shit should not mix. Even before I knew the sexualised reasons for this, I knew it was cause for the disgust that was leveled against me.
I was told that no man would ever love me; that a shit filled vagina (well let’s be honest that word wasn’t used – a different, more vitriolic word was used) will turn any real man to run and hide.
I was not worth touching, not worth loving, not worth wanting. I was not worth anything because I had a maimed and putrid organ that no man would want to put his dick inside. The same person who put their highly sexualised, adult male views on me, also told me that because shit had once been in my vagina, I had AIDS. This was in 1987, and I was a scared twelve year old who was subjected to this barrage of abuse. My father’s hateful accusations seared themselves into my brain and became the inner voice that spoke to me.
I knew that I was horrifically unloved and vile, and wanted so desperately for this to change. I wanted so desperately to be something other than what and who I was. I so desperately wanted to be clean, whole and beautiful.
I wanted a man to love me.
I knew that men wanted women. I knew that men only wanted proper women, good women, pretty women. I knew this because all the television I saw, all the magazines in read, all the movies I ever went to told me this. I knew this because the boys at school all said that only pretty girls were wanted, only beautiful ones with perfect bodies and nothing wrong with them. I knew that I could never compete in this world, and I wished – wished with all my heart – that I could.
I’d already started monitoring my food intake. The reasons were two-fold. If I ate, I shat.
Ergo, if I didn’t eat, I wouldn’t shit. Still, I could never control myself. Finding out only last year, thirty years after my fruitless attempts to understand my body, that I had no sphincter makes me ache for the little girl who was told that she could control herself if only she tried harder. How wrong they were. I needed medical intervention.
The second reason was my stomach. The scar that ran almost 25 centimetres across my belly resulted in a little pouch of fat that protruded over my knickers at every opportunity. I wanted, I needed a flat stomach – just like the once touted in all the magazines. I had decided that the only means available to me were to reduce my food. I just didn’t eat, but still I hated my body.
My breasts also failed me. The scar that ran from underneath my right scapula, under my arm and across the front half of my chest meant that my right breast had its growth constricted. The scar tissue did not stretch, and the breast grew tubular in shape – a vast difference to the rounded left breast. The nipple hung four centimetres lower, and despite magazines talking of the normality of slightly different sized breasts, it was clear they were not talking of breasts like mine. I had a wonky, scarred body, and everywhere I turned the world told me that bodies like mine weren’t wanted. Everywhere I turned, I was told that bodies like mine could have been made better with harder work, more effort and positive thinking.
But bodies like mine don’t change – no matter how hard we wish, they stay the way they were born.
They stay the same as they were when they healed after all their surgeries. Bodies like mine are looked at every day, by people just like me, and we hear the world’s voice telling us that we are no good.
It’s a hard road to travel, especially when the dichotomous nature of media both expects perfection, and preaches that if you are not so, all you need to do is accept yourself. It’s a hard road to travel, especially when the currency afforded to women and their worth is how pleasing they and their bodies are to the eye. One born with deformities can never expect to meet these demands, but they are well aware of them, and it is only just now that a new narrative is being written.
It is only now that I am beginning to realise that all those voices were wrong. I am someone worth loving. I have something worthwhile to offer this world, and while I still wish for a different body, I’m starting to understand it’s because of the world’s voices that I see the faults and not the beauty.
I hope that I can be a new voice and that voices like mine can drown out the lying cacophony.
Words by Christi Bezemer