Monday 11 August 2014

Deferred Gratification

There's a white room.

You are sitting on the only chair and there is a table. The only other things in the room are a jug filled with diluted bleach, a plastic cup, a laptop with a wi-fi connection and a syringe marked "antidote".

Every three hours, you must sip your way through a cup of the bleach solution. If you choose, you can down it and wait for the next cup. You soon learn that's the best way. There is absolutely no way of avoiding the bleach. If you were to try, you'd be dead within a few days.

Every sip rips through your oesophagus to rest just above your solar plexus in a ball of unspeakable pain. It slices and gnaws and burns like a little part of hell itself.

You come to dread that cup and the jug and even the chair. The only thing you have to distract you is the infinitely captivating world wide web. You can absorb yourself in dramas or documentaries, music or poetry. You can research great conundrums or chat with friends. You can read novels, or play quizzes, you can learn a new language or anesthetise yourself 24 hours straight with cute kittens. But distraction is all you have. The only opiate you can rely on.

You only get one antidote per week. Once you've used it, you must bear the next 6 days no matter what. Constantly you ask yourself, "Is it now? Do I give up now? Can I take any more, even just a few minutes?" Whatever happens, you are the one who has to choose. No-one can do it for you, you're totally alone in the room.

Endlessly, endlessly, endlessly, the thing sustaining you is the thing causing your suffering. The only other option is death, so no matter how hard it gets, how desperate you feel, you have no choice but to keep sipping that bleach. Often you wonder if the mere act of it keeping you alive is enough. Is life really so important that you will go to any lengths to cling to it? Many days you struggle to remember why this life is so much better than the alternative.

But you always remember in the end, always. Every single breath you take whispers "I'm a Mum, I'm a wife, a daughter, a friend." There is simply no "quit" button.

So you sip and you burn in an endless loop.

And it's those final hours just before the week gasps away that are the hardest. Something about imminent relief somehow makes the here-and-now pain harder to bear. You find this odd. Surely it should be the other way around? But like a long car journey, it's always those last few miles from home that seem to take the longest.

You count out every minute. You try everything not to, but clearly time has stopped. Every time you glance at the clock it seems not to have changed. You begin to believe the very laws of physics have altered, just for you.

Soon, you are gritting your teeth through the sheer force of self-denial. You sweat, silent tears falling onto your cheeks. Gutteral, bestial noises escape from you like pressure cooker steam, involuntary and strange, as though they are coming from someone else. They surprise you.

Distraction is in fragments, almost shattered completely. You read the same paragraph over and over and over again, watch the same movie scene. You re-wind and re-peat and re-watch but just cannot snatch a single one of those elusive, whirling, distractions.

At long last, like rain after a long drought, the antidote is yours. You grab it, you're shaking. It's almost too hard to administer it at all. You remind yourself you have to focus for just a few moments more.  Finally, you start to feel it, seeping and warm, spreading to every last cell.

The relief is overwhelming - so overwhelming that you start to cry all over again from sheer cathartic release. That relief is like bread to a starving man, like a breath of life itself.

How is it that those clocks sped up? That time now passes in cotton-wool chunks, blurred and casually ignored once again? How is it that relief hours are so much more fleeting than suffering hours? The pain is gone, but only on the surface. Somehow, it's taken you with it, replaced your soul, your very spirit. You're left feeling depressed and anxious but you couldn't say why. You can't explain that sudden lack, that chasm so recently filled with pain, now echoing empty and rootless.

Yet all too soon it is wearing off, seeping away as quietly as it came. You try to hold those anti-dote minutes and hours in every last cell, but it's beyond your control. Everything is beyond your control. Except the table, the cup, the jug........


There is often a terrible paradox in long term illness. The very thing causing your suffering is the one thing you have to do to survive. I have bowel disease but food is not optional, basic sustenance is compulsory. All food is bleach to me. Those with failing lungs still have to breathe, air is their bleach. Those with failing minds still have to think.

Clearly only the most committed masochists would ever survive it.


  1. My Crohn's is only that bad intermittently, say when I overspend the spoons or eat something really stupid. But this is a great description of what it is like ... and put, hopefully in terms everyone can understand. And explains my addiction to historical research and the Internet too, my distraction, my reasons for getting up and making the effort. Thank you Sue. X

  2. You're so welcome. I only ever write posts like this in the hope that a handful of people might read it and think "Wow, that's my life, I've never seen it written before" It's what keeps me going with all of this x

  3. Oh Sue, I am so sorry at what you are going through.

  4. You depcribe the efects so well,especially that when the pain goes so does somethhng else...

  5. Sue, that was very profound, very powerful, very honest and infinitely human... I was reminded of the follow words that we had to learn at school, another life time away:

    Say Not the Struggle Naught Availeth

    SAY not the struggle naught availeth,
    The labor and the wounds are vain,
    The enemy faints not, nor faileth,
    And as things have been they remain.
    If hopes were dupes, fears may be liars;
    It may be, in yon smoke concealed,
    Your comrades chase e'en now the fliers,
    And, but for you, possess the field.
    For while the tired waves, vainly breaking,
    Seem here, no painful inch to gain,
    Far back, through creeks and inlets making,
    Comes silent, flooding in, the main.
    And not by eastern windows only,
    When daylight comes, comes in the light,
    In front, the sun climbs slow, how slowly,
    But westward, look, the land is bright.

    Arthur Hugh Clough

    Sue, hold on tight even when there is only a cup, a chair and a table Your spirit explodes through your writing, I am truly humbled by your strength to Love which also shine from your posts, your life, your action. May God Bless You and Keep You, and Yours. Adrian Wait xx xx

  6. Pretty stuff Sue. Thank you for this Hope.
    Luv M

  7. For 15 odd years I had the same and life,jobs and friends passed me by.As a single parent mum on deaths door I gave my child up at age 4 to live with her father...a massive regret I still carry every day...after 5 operations for strictures and endless pain,vomiting in and out of conciousness, liquid diets
    and months without solid food. My last op was two years ago. Life with
    crohns takes so much away from us and is mainly invisible to the world.
    Your descriptions are so spot on and I am truely thankful to you for your eloquence in putting the experience in words for all to read.
    it is hard to keep being that strong for everyone , I hope you have some good days soon my love.
    Bobbie xxx

  8. I am sorry sue. None of us know each others stuff. You are a treasure. X

  9. Sue this is such a powerful piece that tells it how it is for people coping with pain and chronic illness - needs to be read by every one in the caring world. Your words just amaze at their lucidity.

  10. I raise my glass of bleach to all of you... I raise it to you for as long as I can stand to lift the fucking thing!
    There are many days when I do see a quit button... some days it is *all* I can see... and I come close to pressing it. As much as I try to deny it's existence and refuse myself that 'option', it is always lurking there. And if I do not press it today, it is because I am still able to hear voices from far off, echoing 'cheers'.

  11. Go away spammers. Anyway, I wanted to thank you for writing this, Sue. It's important that other people understand what the chronically unwell go through.

    It also made me realise that I no longer feel this way. Earlier this year the right combination of treatments was found for me (due to medical people having time to listen and think), and now things are getting better bit by bit. I can't remember the last time I wanted to press the quit button - it was certainly several months ago. I hope something similar happens soon for you and everyone else in the same boat.

  12. Misspiggy - and everyone else

    I've given up against the spammers. I figure we can just skip. I do love how when I write like this a few of you always feel it spoke to you. Makes it all worth it. xxxx

  13. You write so awesomely, reading your blogs feels like being in your shoes for a nano second, you capture the moments and breathe life in your words so that we really get to feel and understand it abeit only a breif moment. I wish the bleach could taste of chocolate, i wish you didn't have to go through what you go through, if only we knew why we are all sent the challenges that life sends? But one thing is for certain you have amazing writing skills that i'm sure help and inspire numerous people and maybe that was one of the things you were put on this earth do do. Sending Luv, stay blessed XXX


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