Monitoring the collective uteri of disability.

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Abortion – the word itself smeared with judgement reserved for women – is a debate that keeps rearing its head. Ironically, the debate has a life of its own, turning into a monster that aims to trap, maim and mark those who enter the fray.

Too many think it as simple as pro-choice or pro-life. Too many think it is an issue that only affects pregnant women, and too many people without any stakes in the matter tread on, trampling all in their way.

To make things clear – I agree with abortion. I agree with a woman having the choice to stop a pregnancy if she wishes. I agree with this, because it is only a small step in the removal of monitoring the collective uteri of women as a whole. I agree, in part, because too many women do not yet have the choice whether they will become pregnant on their terms or not. Too many women have others trying to decide for them, trying to dictate the ‘if and when’ of a baby, and very often the ‘what’.

And while I agree with abortion, and access for all women to safe and effective uterine related health care, I don’t want to be asked to justify if I would abort or not. Not only has the debate morphed from if you have or haven’t aborted (I can only assume in a social test aimed at trying to mark the women with some sort of red letter), but now people openly ask others to justify ‘what’ they would abort… however, it depends on ‘what’ type of child this is.

 

This is where the debate gets ugly.

 

It is where it puts on its eugenics-lined coat, and struts through people’s conversations demanding justification for the aborting (or not), and this then allows the next question – the one with the societal bias many of us are expected to live with – comes to the fore.

As someone with a disability that affects my midline – my digestive system, my vertebral system, and my uterus – I have always known that I may not be able to have children.

Yet, what hurt the most, was knowing that my choice to have a child – even before I could have decided to abort the foetus – was being monitored. True, there was no weekly meeting asking that I justify my status, but the constant societal discussion regarding disabled women’s choices about reproduction informed me well enough.

When I was in primary school I was aware of a girl one year below me. She had Down’s Syndrome. She also had a hysterectomy – in grade 5. The reason? She wasn’t able to cope with menstruation.

The story itself is horrific enough. That I know this aspect of her story is worse – significantly worse. The girl in question wasn’t even deemed worth the privacy of her own uterus; a uterus that she had no control over, a uterus that was removed under the guise of care because she “couldn’t manage her periods”. I was learning about periods in school. I knew they meant “your body is now ready to have a baby”. I wondered if she knew that she wasn’t going to be able to have a baby, but don’t think I thought much more of the situation. At 11 I had my own issues going on, fortunately one wasn’t “managing my periods”, but that would turn up soon enough. As an adult I realised the more likely sinister motive for the hysterectomy, one that I heard advocated on a number of occasions; that women with an intellectual disability are incapable of looking after a child, nor are they capable of adequately monitoring contraception (the horror of these women having sex palpable), so unwanted babies will abound.

Unwanted by whom?

I endured an adolescence where I was told I would not attract a man; that no man would want to touch me, my physical disability rendering me as lacking the attractiveness needed to invite the touch needed to procreate.
I have been told to be grateful that someone did decide to marry me, that I am more blessed than others because my husband “looked past” the issues; assuming that loving and – shock horror – wanting a disabled person is something that simply can’t be done.

 

The concept of abortion was so far removed from this debate because (I guess) I would never have been in such a situation. It’s a mindset that too many disabled women have to endure, and the monitoring of uteri begins by making sure we know that our uterus is not sought after to impregnate.

 

When the disabled woman contemplates pregnancy, or – more egregiously – gets pregnant, a new batch of questions prevail.

What if it has what you have?
Will you abort if you see that it has the same deformities?
Do you think it’s fair to bring a child with … into the world?

Such probing, inconceivable questions don’t seem to be levelled at non-disabled women. We, disabled women, are being asked to justify the ‘what’ of our uteri – what exactly is it we deem appropriate to let grow within our wombs.

As well as being subjected to discussion pro or anti-abortion, we are also expected to politely nod at, and answer, questions about our proposed procreation plans.

The depth of hatred towards the disabled culminates in a sort of anger when it is explained that a child with a disability would not be aborted; the life of the disabled child deemed worthwhile by the disabled mother who herself, lived through the difficulty of growing up disabled. I have been asked, too often, if I would abort if my child had imperforate anus – one of the disabilities I was born with.

What makes someone ask this question? I know they are expecting me to say, “yes”, that I would abort this child, and challenge me to justify my decision if I said no. I know this because they always follow up the initial question with statements regarding the “quality of life” the child will have, and if I really wanted anyone else to go through what I went through as a child.

The ultimate indignity has been in a support group for people who parent children with my disability, as well as those, like me, living with our disabilities. Newly pregnant mothers come and seek advice, asking what to expect in this life; mothering a child with a disability. They seek comfort and reality, they seek news they will prevail in this new life they have found thrust upon them. None of this is the indignity, instead it is when someone comes to ask advice on abortion – if they should abort or not – forgetting completely (or sloppily ignoring) that there are adults in the group who live with this disability, and don’t parent it. Adults who have been asked to justify their existence, their right to success, repeatedly, in the preceding decades.

The indignity was when talk moved to me being asked to justify to a mother why she shouldn’t abort a child like me. As pro-choice as I am, this incensed me.

Do not ask me to justify your choice by belittling my own life experience. Do not expect me to give you counter arguments that ask me to label myself as less worthy of life, as less worthy of opportunity to strive for a place and voice in this world.

As pro-choice as I am, do not assume that I want to explain why it would have been okay for my parents to abort me. The problem with seeking input from the disabled person, is that this person now has a gamut of life experiences to draw upon, often where people in their lives have suggested worthlessness and regret at affording the opportunity of life, so much so that the pain of this memory cradles the answers offered. You can not expect anyone else to tell you if you need to abort or not, and I am not in a position to advocate abortion based solely on the disability of the foetus.

If I were to abort a future pregnancy it would not be because the foetus was diagnosed with imperforate anus, or any of the other six deformities that make up VACTERL. For me, there are more pressing reasons why I might abort, but to base it solely on disability would say that my life has no value because of disability. It would be to say that my disabilities have rendered my life too difficult to find worth, which is not true. I spent so much of my childhood reminding myself that I was more than what people saw, that I had something to offer the world, and that my life was needed. I spent long hours wishing death, but in a defiant dichotomy, wanting life, wanting to prove what I knew deep inside – that I had worth, and my disabilities did not change this.

Our society spends too much time forcing people to justify their existence, too much time monitoring the ways and means women bring new life into this world. It is this that needs to stop; not the advocating of abortions. Society, as a whole, also needs to realise that restricting access to abortions is only part of a wider pattern of reproductive constraint, and until such a time that this constraint is removed from people’s minds – abortion is the least of the issues by far.

Christi Bezeem.

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Iscariot’s Rope

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Today I found Iscariot’s rope –
Bloodied and frayed from overuse –
False camaraderie is still a crime the world commits.

Thirty pieces of silver offer no recompense,
Do nothing to alleviate the guilt.

They sit, heavy in the pockets of the damned –
Replacing the secrets a modern-day Judas was to keep.

The Potter’s Field has been fertilised with idle gossip,
an accomplishment placed on the shoulders of the unwary.

The silver is churned through the dirt; relishing the tarnish it had bought.

And yet, the rope swings above,
Never without the weight of someone’s reputation.

Patiently it waits; it is a lesson never learnt.

Christi Bezeem.

 

Patient X

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They found you sulking in the corner of the room – blubbering forth a series of incoherent syllables that never quite morphed in status to words.

Your weathered features – punctuated with mismatched hues of yellow, green and blue – sparked a level of sympathy often reserved for the congenitally infirm. It was a miracle you were still alive; as the fall had rendered your legs useless, yet there you were, waiting patiently for rescue. It is the one thing you can do well – wait. Wait for someone else to do whatever it was that needed to be done, wait for someone else to take the blame, wait for time to pass by and maybe – just maybe, everyone would forget all the horror.

They didn’t know this about you, that you had the tenacious patience of a predator; and the bruises did not let on there was a secret to be told. And so you babbled, like a Pentecostal baptised in the Holy Spirit, savouring the attention, and relieved that you would soon be warm, comfortable and well fed.

I watched them gently wrap your disjointed limbs with a series of bandages, swathe your soul with tender words of encouragement, love and purpose.

It was more than you knew you deserved, but why would you tell them that? You saw no reason to stop the pretence, no reason to admit that you had done nothing to deserve such kindness. I watched as they registered their newly scrubbed John Doe into a clean hospital ward, and I waited too, knowing that mine was a game of patience; more so than yours.

There was pity in their eyes as each of them talked to you, trying to elicit a memory, a cord of life that could be used to reel in information that might help solve this puzzle. And it worked. It worked because your memory was never broken to begin with, just your ability to articulate the role you played in developing each and every one of them.

I was the only one privy to these buried visions. You took solace from their faces, using the pity that percolated in the room to affirm the story that would now become your mask. I had anticipated this, as all too often I had found myself shackled to you, forced to listen to the lies that tumbled from your mouth at every opportunity. You sat mute through their questions, your eyes glazed in pretence of amnesia.

I, on the other hand, listened to the memories launch themselves around your head.
Each question asked of you was littered with judgement. Never for you though.

They were too taken by the beguiling nature of your age; your injuries duped them into believing that you had suffered more than any human deserved. Their scorn was reserved for those whom they deemed as being responsible for your fate.

You and I both know that is you.

You are responsible for this; I will never cease to tell you this. You will hear my voice as a constant reminder of the role you played in this. I know you will take solace from these people, as I take mine from time. You cannot escape time; you cannot escape me.

“Surely someone is looking for you? Your clothes are well cared for, there were photos of a young girl in your wallet.”

They wait. I am amused by their constant attempts to get you to remember. They do not understand why no-one is looking for you. You and I both know why she does not come.

She will never come.

I know you can hear me. I see the recognition in your eyes. I can see the shame is hard to swallow, but I notice, once again, you seek a reprieve from the past. You remind yourself of all the accolades your friends gave you. How proud they were of you that you raised the child by yourself. You basked in the glory of their praise. You used their voices to drown out mine.

I know you could hear me ask you to stop. I saw you falter several times when you heard my questions. I asked you why you did this to her. I scoffed at your lies. You knew your behaviour was wrong; still you accepted your friends’ excuses for your abhorrence. I knew then, as I know now, that as long as no-one else knew the truth, you would be happy.

“Is this your daughter? What is your name? We must find her. I can’t believe that she left you there!”

They are still fooled by your age. It is curious that human kindness prompts us to see only innocence in the very young and the very old. Now the very young I understand. You do too don’t you? Think about her. She was young, full of innocence, beautiful. The old however, they have lived a life; they know what will disgust others and what will inspire. You knew this, just as those Nazi criminals knew when they immigrated after the war. Now when one of them is arrested people find it so hard to believe that they were evil. The Nazi’s greyed features and thinning hair, curved spines and sun worn hands convince the world that someone so frail could not have committed such a crime.

In the same way these people now judge your daughter. They look at you and think of their own gentle grandfathers. They would never abandon their kin, and don’t understand why you have been left behind.

Listen to them. Hear them. They are discussing your daughter. They don’t know who she is yet, but they are disgusted by her. Their disgust fuels the pity they feel for you and enhances the tenderness in the care they offer. To them you are a valued member of the community, cruelly left when you needed the most care. Look at their admiration for you; ill-deserved; but only you and I know this.

Are you sick of my voice yet?

I know you pretend you can’t hear me.

I will keep talking. She deserves that much at least.

They think of her in the most disrespectful of terms, and you let them with your silence. Your hubris fuelled ruse is more important than her. When will you stop being like that?

I have something to show you. You don’t even need to open your eyes. Remember this? It is your child. You did this to her.

She did not tell, you made sure of that. She stood silently as you grabbed a fist full of her hair and slammed her head against the door jamb. Your rage knew no bounds, and you could feel the power swell in your heart as you berated your fragile offspring. She stood there – this did not surprise you, as she always stood in sullen defiance. It angered you to see her able to stand so strong throughout your barrage.

She never spoke, but her eyes were fire; a furnace that warmed her through those cold nights of shame and humiliation. The pattern remained the same. You would sit there seething each night, reminding yourself about how hard your life was because of this child. The hate would build, you could feel it clawing at your chest, pulling your sternum up so hard you would soon stand resolute.

That fateful night was no different except that she was sleeping. She rarely slept, knowing you were prone to wake her on a whim, only to ask her to complete a series of household tasks that really could have waited until the morning. The night was easier for you this way. If you had waited until morning the guilt of what you had planned to do would have made you stop your infantile behaviour. Instead, you chose to allow your anger to direct your actions through the night, and slept through the morning so that by the time you had risen the series of events could be wiped from your mind.

The first clue was the stands of hair that were trapped in the roughened edges of the jamb. You paid them no mind, choosing instead to yell at your child through gritted teeth. It was only when you saw the blood dripping down her legs and pooling on the floor that you panicked.

Did you know she did not even feel the pain of the cut? It was only as you dragged her to the bathroom, and stood her shivering body in the shower recess that she noticed the strange wet substance dripping down her back. I was with you when you called your friend to ask for advice. Your daughter was listening too; the pain of the deep gash to her head now pulsating through her body. She heard you ask your friend for advice, ask if you should take her to the hospital, then silence as you got the answer you wanted. She was waiting to be taken for medical care when you returned, instead you told her she would be okay and to go back to bed.

I saw the stoic resistance return to her face as you let her know she would not be getting the attention she needed; relief too, because she loved you in her own way and didn’t know what to do if she was forced to leave her home.

Exhausted, you left her in the bathroom and returned to bed.

She is the one these Samaritans now judge.

They do not know of the nights filled with terror, the demolishing of spirit that you commanded.

Let me take you back to that time. The hallway clock ticked inanely, stretching the night past 2.00 a.m., 3.00 a.m., 4.00 a.m. She could hear her heart beating a course of blood through her throat. Always shivering, she would think of her bed and its warmth, she would wait for the quiet of the dawn, when you were guaranteed to be asleep.

Sometimes you wake now and listen to the hum of a hospital ward dimly lit with a plethora of machines, lights and neon signs. There is a sense of quiet ease, with everyone knowing their place, and you knowing that you will be looked after.

Do you wonder where she is? They do. They listen to your jokes, your articulate explanations for the goings on in the world and know you are someone they could only dream to be. They have scoured the missing persons’ listings to no avail.

But you are not missing, nor are you missed.

That one hurt didn’t it? You are not missed, and that is a bitter pill to swallow. Like the obscenities you used to throw around with abandon, this knowledge will consume you; consume us.

I see you have closed your eyes again.

You can’t block me out. You are not like her. She was a master of dissociation, a well practised art form of survival. You are the master of blame; he made me say this, she made me think that, I reacted this way because they … Can you see the difference? No I suppose you can’t, because I can see you now as you look for the nurse to show you kindness.

“Sir, are you comfortable? I loved the story you told last night, so engaging …”

The nurse looks at you with renewed respect. You are used to this. People are always pleased that you share conversational time with them. They see it as a compliment. The distinction of having such an educated individual take time from their own lives to enlighten other people’s. This makes you proud, and once again you can avoid the memories that are now demanding to be acknowledged.

“I have been looking for your daughter …” Your heart pounds incessantly; her heart was stronger.

“Do you remember anything? An initial, a place, anything? It will help.”

This pretence is hard isn’t it? You avoid the nurse’s eyes lest you reveal some semblance of truth.

“Your wounds are healing quite well, but without knowing who you are we are not able to send you home …”

You are happy to hear this aren’t you? I see a tinker of joy flash in your eyes. I am disgusted, this cannot go on forever, the truth always comes out. I know it is getting harder for you to ignore me. That pleases me. The decades I have spent trying to get you to listen are starting to wear you down. You don’t even have to say sorry to her; only admit that her memories are true without the litany of excuses. Can you do that? I didn’t think so. That is a fate much too hard to contemplate; yet … I see a flicker of shame.

The nursing staff knows something.

Can you see them? There … look.

They keep glancing at you, talking amongst themselves. The hushed voices frustrate you.

You begin to feel panicked, the ignominious sensation of being caught out mounts in your spine. I can feel it.

Once again you resort to your old routine. I don’t think your mantra will work this time. I scoff at your fear, but remember the nurses still think you are suffering amnesia.

You saw her before I did – your daughter’s childhood friend.

Did she recognise you? I am sure she did. You pretend to sleep, as you are not sure if you can control your eyes.

“Good morning Mr. Sutton. I have something to read to you. It may assist your memory. I knew your daughter; everyone said that you did such a wonderful job raising her …”

Is she mocking you? You work hard to maintain your composure, although I am sure she has noticed the increased pulse rate and sweaty brow.

“It’s such a pity you have amnesia, as I am positive you have such beautiful memories of her. It’s such a shame you have forgotten those. Let’s see what we can do about that. Should I read?”

She takes your mute face as assent and begins.

“Never take revenge, my friends, but instead let God’s anger do it. For the scripture says, ‘I will take revenge, I will pay back, says the Lord.’ Instead, as the scripture says: ‘If your enemy is hungry, feed him; if he is thirsty, give him a drink; for by doing this you will make him burn with shame.’ ” (1)

Her eyes catch yours. She knows.

“Do you feel shame Mr. Sutton? No I suppose not. However, I am duty bound to look after you, and sincerely hope that you get your memory back soon.”

I smile.

An apt use of Paul’s letter to the Romans don’t you think?

You sigh, and life continues as it did before.

 

(1) Romans 12: 19 – 20 Good News Bible The Bible Society in Australia Canberra 1986

Christi Bezeem.

Rhetoric always leads to regret.

I teach. It is a job I chose decades ago as I wanted to speak to young people and be a person who could lift them up when they couldn’t lift themselves. I wanted to be the adult I needed. My job means that I get to offer words of wisdom to the students, and here is a piece I wrote for them.

Something we do in our privileged, Western world is to look for inspiration.

Inspiration to be better, smarter, stronger.

We see ads telling us that if we buy things, listen to things, eat things, and do certain things we will be made into better people.

And we fall for this every time – hook, line and sinker. We are tricked by the promise of an easy and beautiful life – one where everything goes well for us, and we are lulled into a sense of entitlement – that surely, after all the bad the world has piled on, we now deserve this ‘one thing’.

But what makes us better than people who don’t get these things?

People who don’t buy, listen, eat or do. People who don’t do any of that because they can’t; are they better than us? Are we better than them? Too many of us tout ‘deserving’ as a reason for getting; ignoring the plethora of most deserving people in the world who just never seem to catch a break – let alone ‘get’ any of these things.

Here’s the irony – we are all trying to do these things, adhere to a set of rules and regulations bandied about as simple hoops to jump through, and we’re convinced this behaviour will make us better.

This behaviour does nothing… we find ourselves not guaranteed a simple, special life.

We find ourselves trapped in a life that is full of turmoil and fear, some of us realise we should just give up … We can’t achieve ‘that’ anyway – so why bother?

It’s at this point is expect you have lots to say about my statements above.

You want to argue with me –‘you’ have reasons to bother. ‘You’ have things to justify your behaviours – why ‘you’ buy stuff, why ‘you’ eat it, why ‘you’ do it. You know, deep within your soul, that I too eat, buy and do.

These things matter so much to you, this behavior and lifestyle is part of who you are, and even if you can’t explain why, you’re not willing to give it up.

You don’t like me telling you that it does nothing anyway so why bother. You are challenged by this.

Why then, do we do anything?

It is as simple as this – we, humans, can’t live with the consequences of not doing these things.

We have determined that the level of regret we would feel is too great, that the impact on who we are as a person is too large to ignore, and so we buy, eat, listen, do.

We find people who support us in our philosophy, and we justify our actions with cries of –see, see, they’re doing it too. It’s ok. I’m not the only one.

We see this as our measure of success.

We justify what we do, knowing that someone will tell us that it’s okay, that there’s more time, try again later, better luck next time, who wanted it anyway …

It. Was. Just. Too. Hard. Anyway.

I could tell you stories of people who faced adversity and overcame it, in fact that’s what a lot of so-called inspirational pieces do. Have some successful person behind the keyboard; smashing out rhetoric… demanding you ask yourself – why?

Why can’t you do it? So and so could manage, what is it exactly that is stopping you from achieving glory?

And you get annoyed; angry even.

What does this person know about your life? Your struggles? It’s just damn hard this bloody life? What does this person know about that? It’s alright for them, they’re successful … something must have gone right for them somewhere.

I hate that too.

But this is not an inspirational piece. It’s a challenge piece.

I want to challenge the way you think about yourself. Challenge the goal you’ve set for yourself. Challenge the excuses you give yourself. Challenge your perception of success.

For me, success was having a colleague at my last place of employment walk up to me and tell me that it was all good and well I expect so much for my students, but I just didn’t know what it was like to have an unsupportive family. That if I had truly lived a life of hardship, I wouldn’t be sitting there expecting that everyone had the potential to be something. And he tut tutted, and let the admonishment drip from his eyes, as he told me off – a woman who had never faced adversity … never once realising how completely wrong he was.

For me, it was a close relative saying that life was easy for me – that my current life achievement were testament to that, and if everyone had the opportunities that I had had, their lives would be great too. He threw out accusations of fairness and lack of opportunity on his part, and saw situations I had created for myself as gifts from others, and the lack of manna dropping from the heavens in his life as proof that he had a life less charmed.

Too many said that I just expected too much of people who had so many barriers in their way, because the barriers stop every type of success, and having “never encountered a barrier in life” I just didn’t know better, and so I belligerently expected that others were capable of success.

Yes – that’s when I knew, with no shadow of doubt, that I was successful.

I had become a person that people saw as having no issues to overcome, no problems to navigate; as someone who sailed through life getting everything she needed, and anyone who didn’t have what I had received from the world, just hadn’t been given the right tools.

I knew this was a measure of success. The ability to be seen as knowing the weight of a silver spoon, and blend in, chameleon like, into different walks of life is success because that’s not where I came from.

For people to mistake me as someone who had never had a barrier in her way showed the mistakes people make about success. The mistake of thinking that it’s all about luck and opportunity, and nothing at all about sheer bloody mindedness and hard work.

Life put many obstacles in my way, and some of these continue to adversely affect me.

I’ve known the fear of being alone in a hospital room for months on end with limited visitation and comfort from a parent.

I know the shame of a body that doesn’t work properly.

I know the sorrow of losing a parent.

I know the sting of a human hand and tongue, and I know the heartache that lingers.

I know the bitter aftertaste of betrayal from adults charged with your care.

I know that every damn time you get past an obstacle, it seems that the world just shoves another one in your way.

I know how unfair it all is.

But … I also know this.

Focusing on how hard it is, does not make it easier. Telling everyone how unfair it is, does not make it fairer. Telling everyone that there is a mountain in your way does not make the mountain disappear. Wishing for someone to come and move the mountain for you, does not make someone think that moving the mountain for you is something they can do. All that does is turn the fury you feel into a heavy glutinous mess in your belly that churns up and makes you sick.

It also stops you from achieving anything.

Maybe you have the types of obstacles I had in life.

Maybe there are more horrific things that have happened to you, maybe less. We do share the burden of life though, and the pressure to work hard, do more, get better results in studies or work is always there … in this Western world.

All of us can be successful.

Success is as simple as this. It’s about knowing that we have given it our all. That there was no more we could have done. It’s about making sure we haven’t set ourselves up for regret.

Regret comes from seeing the obstacle and giving up. Not looking for a way over, around and through it. Saying to yourself that it is all too hard, so I’m just going to sit here and wish it would all go away, and if it doesn’t it’s just not fair, and no-one can expect me to have moved past it, because other people didn’t have that obstacle.

Regret comes from telling yourself that you’re okay with missing out. That you’re okay with that obstacle getting in the way, that you’re okay with not being about to see a way forward.

Regret comes from thinking that you’re supposed to do all of it by yourself, and because you couldn’t – you didn’t. Regret comes from knowing you couldn’t do some of it by yourself, so you didn’t even bother to do the things you could do, because they led to the point where you needed help, and as that wasn’t success anyway, why start in the first place.

Many adults know regret.

That is why they push their young so hard. They don’t want the upcoming generation to have as much regret as they do. They don’t want their children’s lives to be weighed down by regret.

Too often young people see these expectations of success as an obstacle. They see it as a means for adults to make their life harder.

I ask those who say this to look again.

Studies… growing up… life – is the mountain.

The work, the words, the expectation adults offer – is a ladder.

It is designed to push, to challenge, to make your brains hurt. That means it’s changing you. That means it’s making your brains, your resilience, your attitude better.

That means it’s making the mountain smaller.

There are many adults making a lot of ladders.

They’re making lots of things – all of them will help the younger generation get past those mountains.

Sometimes our children, our students, our charges, mistake the ladders we place before them for mountains and sit down wishing they would go away. They wait for others to join them at the base of the mountain, and they find solace in the fact that others, too, find it hard. They watch others climb over the mountain, and cry out that it was easy for that person anyway. “That person always makes it over, that person doesn’t know how hard the mountain is to climb”.

They wait for the mountain to be taken away, and talk about how unfair it is that the mountain was there in the first place.

It’s not unfair, and understanding this simple concept is the key.

Life – is hard. But there are people there to help. There are ways through the adversity you face.

It is a reciprocal thing though. You will get what you give. If you take the ladder, the foothold, the clue about how to climb, it’s easier next time. If you write the essay, practice the equation, write up the prac, complete the report, do the work… it’s easier next time. You know what you did wrong, you know what made the mountain harder to climb over, and you avoid these things the second time.

It gets easier to do each task. And that’s the key.

You have to do so much more yourself, only because it’s the doing it that changes you; makes your brain different, makes you stronger, more resilient, more able to face the challenges and adversity.

You wouldn’t get to an elite sports level without training, and this is the same. Training happens often, training is something you have to push yourself to do. It is something you can excuse yourself from.

Life is the same.

The reciprocity of life is not expecting others to work for you, and you offering nothing in return. It is a give and take of effort. You need to make sure the balance is there.

So I ask you – What is your standard? What is the bar you’ve set for yourself – is it one that pushes you, or is it something you could walk over without any effort.

Look for people who will help you. Don’t look for people who will support your excuses. You need people who will challenge you to greater things. People who will say, “actually no – you should be pushing your limits now”.

And in return, be that person.

Offer the ladder to others; help them get up from the ground, tell them to come and study or work with you instead of complaining that it’s too hard. Work together to smash through these mountains.

Because the truth of life is this – you are here to make a difference to this world. You have an impact to make. That’s what success is – making the impact and difference you should have made, not lowering your expectations and accepting a lower level of change.

Only you will know if you’ve made it.

You can fool so many people, but never yourself.

You can’t delude yourself and wish away the regret. You can only know that you gave it your all, or realised that you need to challenge yourself and push more from there. It’s never too late to do this, but now is a good time. Don’t let people offer you excuses, don’t let them stop you from reaching your goal.

Their excuses won’t change the truth – that you were capable of more. Their excuses are just rhetoric, and rhetoric always leads to regret.

Here is a picture of me, striving for success. Success for me is lifting the young people I work with up, letting them see the stars they can shoot for, and knowing that someone always has their back. It is a candid shot, taken unawares, but gratefully received.

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Christi Bezeem.

 

The Queen Victoria Hospital

Many children who are born with congenital deformities, or who become chronically ill, find themselves admitted to the Royal Children’s Hospital in Melbourne. Occasionally, they become patients of the Monash Children’s Centre – both now touted as excellent givers of health care.

When I was young I did not go to the “Children’s”  as it is affectionately called – I went to the “Queen Vic”, a place that fills my nightmares with its dark and cave like corridors. The Queen Victoria Hospital was amalgamated into the Monash when it was decided that the venue would be demolished – and all that remains on the site is the heritage listed buildings, transformed into a shopping complex.

I hated the place – it permeated my dreams, and scarred my psyche. I also struggle to understand how I was not followed up when my parents failed to get me medical care, and the lack of peer support has caused immeasurable trauma. I guess, as a silver lining to the whole affair, is that my experience is fodder for my writing.

Below is a prose poetry piece, that details my admission in 1980. Unlike children now – I was always alone in the hospital, and always absolutely terrified.

Circa 1980

There in the streets of Melbourne lies a red brick salute to a resolute and fine Queen. It is a heritage listed testimony to the power of suffrage, and the burgeoning skill of a youthful nation.

Edwardian architecture so revered that decades later it could not be torn asunder by any man.

There in the streets of Melbourne long forgotten cries linger. Burdens whose silken holds ensure that they are still tethered to their masters. The owner is never sure if she possesses a gluttony of confused memories or elaborated dreams.

Long before the health of the mind was considered on par with the health of the body, little children were left to fend for themselves.

Fear refused to relinquish its ruthless hold and the path to sleep was an everlasting anxious wait of heartbeats that hoped to endure beyond the footsteps and elongated white hands.

The children lay waiting – the false corridor light casting a draconian spell across the ward. Cries for mothers found the gaps in the room, and the Dickensian tribe would offer counsel against the pain that abandonment alone could only cultivate.

It was in the night they came. It was in the night that the pain had to be endured. And in the cold light of day, when you realised you were still alive, you were never grateful.

 

 

The tree of knowledge.

I grew up in a heavily religious household – religious iconography was everywhere and I knew my Bible stories inside and out. I knew that death was a punishment for the original sin committed by Adam and Eve, and I knew that all humans were to experience death due to the sin we had inherited. We were all destined to know what death was – we were all destined to eat from the tree of knowledge, and no longer be shielded from the pain of death.

What I didn’t know was the pain of death wasn’t dying, it was being left behind, being expected to live without the dead. This pain is overwhelming, all consuming, and never-ending. Even after 33 years, it is never ending.

The trauma I experienced in 1986 keeps repeating. It wasn’t the first traumatic event I experienced, and I’m sad to say – it wasn’t the last. Trauma at a young age changes the brain, it makes the brain react in ways that it isn’t supposed to – all in the name of protecting the user.

I find it frustrating when I realise my brain is doing it – covering up, reacting irrationally, causing flashbacks, or just plain reverting to being a child and all the immature reactions that entails. I can calmly sit here and write, all the while my brain is screaming at me, and the world isn’t silent, and the emotions rush at me like a torrent of water.

It is exhausting.

This week is the hardest week of them all – the hardest week of every year.

The time between March 15th – my mother’s birthday –  and June the 8th – the anniversary of her death – is where I feel the swirls of chaos surround me. In between all of this is Mother’s Day, and I have memories of that last Mother’s Day, with her lying in her bed, sick … dying.

There are memories of screaming in the night; the gnashing teeth of cancer too much for her to bear, and she calls out to those who should be looking after her. At times that was me – an eleven year old child expected to carry the blended food to her, to feed her, to assist her to live.

All of this is regurgitated by my brain every year. Up to the 5th of June… today. It is the anniversary of the last day I saw her, the memory of this day forever tainted by the recurring vision of her being taken from the house and taken to palliative care. My siblings and I watched from the front window as our mother was taken by ambulance to the hospital. Her bedroom was at the front of the house, and as soon as the paramedics entered her room she started screaming. She called out to our father, begging him to let her stay. She screamed at the paramedics, demanding that they leave her be. She wailed, calling out to us, her children, and it was clear she didn’t want to go.

“Don’t take me from my home, don’t take me from my children.”

Her screams carried through the air, and only subsided once she was inside the vehicle. That night was the last time I saw her, and four days later, on the Sunday we were going to visit, she died.

It is the hardest memory to bear, and its weight plagues me. It forms words that tangle themselves in my eyes and whisper their taunts throughout the day.

 

The trauma of that last week is etched in my brain, and this voice of the past speaks thusly:

 

Eating from the Tree of Knowledge.

I think you knew.

As you were loaded on the trolley and strapped in.
You knew.

As you were wheeled down the front steps.
You knew.

As the back doors of the ambulance were opened, and you screamed out.

Pointlessly.
You knew

Endlessly.
You knew.

Haunting – those words.

You didn’t want to go.

You pleaded.

Begged.

Found an energy deep within.
You couldn’t walk, but you could scream.

At him for letting them do this.
At them, those you took you.
At us.

You screamed because you knew.

It was goodbye.

This was the death knell.

You would never return.

And you knew that you would only see those children once more, maybe twice.

You would never again hear their secretive chatter.
You would never again follow them home from school.
Never again read to them or make them feel as if the world was a safe place.
You knew that no matter how long they cried, or how hard they hurt, you would never return.

You knew.

And the pain that this knowledge caused was echoed in the scream that ruptured the street.

before proper diagnosis

Circa 1985: Me, my youngest sister, my mother, my younger sister, my brother.

Christi Bezeem.

 

The Quiet at the End of the World.

The Quiet at the End of the World.
Lauren James.
Walker Books 2019
335 pages.RRP $16.99

quiet

I’ve recently read this thought provoking novel.

Here is my review.

What is it to be human? What is humanity? What legacy does one want to leave?

Set one hundred years into our future, these are questions the protagonist, Lowrie, faces as she and best friend Shen come to terms with the world in which they live. There are only 300 humans left on Earth, all of them elderly except for Lowrie and Shen, who know that one day they will be the only people left on the planet. The days are filled learning about the technicalities of living, and mud-larking throughout London, scavenging pieces of humanity as they go. They come to realise the pieces of human life they find, represent the trajectory of humankind as a species, and one small piece sets them seeking out more information in the internet archives.
A sense of secrecy and impending doom fill the first half of the novel, and it is soon evident that the character found in the internet archives will teach Lowrie and Shen more than what their parents ever shared with them. There is a sense of mirroring as both timelines struggle with their infertility, and how they can find meaning in their lives. This is not the only problem to solve, as a crisis soon forces Lowrie and Shen to put their life’s learning to use, and save themselves and everyone they love.
The novel is a sci-fi exploration of our future world, and delves into the way humans prioritise themselves and their desires. By integrating the archival social media discussions from the 2020s, James is able to comment on the way myriad politicians and societies struggle to address the needs of the human race in a way that will ensure our future. It is a disturbing parallel to our modern world. There is also an investigative aspect; the reader is with Lowrie and Shen as they try to piece together the clues left behind, hoping to know what it is that will solve the emergency they face.
James is innovative in both character and plot. There is a seamless integration of diverse characters; sexuality, gender, disability and race. It is a refreshing take on the world we live in, and to see multiple variants of the human experience reflected in the novel makes it all the more authentic. It is an encyclopaedia of everything humankind values, and it prompt the reader to reflect on what it is they value, and how they too might react if this was to happen to them. It can be a confronting read, and this is what makes the read so worthwhile; it’s a chance to admit what truly gives us worth, both as an individual and as a species.
Due to the existential nature of the story, it is recommended for mature readers, 15 years and above. It has challenging concepts so many students would struggle with it as a set text, but it would be an excellent addition in the school collection as a wide reading or literature circle text. The novel would also suit a thematic unit based on ‘The Human Condition’, and students should be given the opportunity to discuss their reactions, thoughts, and fears. Admittedly, this is a text made just for them; the social media and world view of politics, economy and environmentalism suits the climate they are making, and it is clear old ways of thinking will soon be abandoned.

Christi Bezeem.