A site to share information on Welfare cuts, illness, disability and general, current, political thought.
Tuesday, 5 June 2012
They keep telling me to enjoy my holiday. Relax, they say. But I'm holding onto a rope. Every few inches, there's a knot. The rope drags me behind the ship and the waters are rough and cold. I grit my teeth and hang on. I've been hanging on so long it's all I know. The waters are deep and frightening. Whatever happens, whatever else I do, I can't let go of the rope or it's over. I'd float away like so much flotsam. I'd never see the ship again. I've managed to pull my chest clear. Inch by agonising inch I've dragged my hands one over the other, knot by knot. But it only takes a moment, a lapse, if I stop concentrating on the rope, I'll plunge back down, the knots slipping through my icy, numb fingers until I'm up to my neck again. Or below the water completely. They talk to me from the ship, but still it's hard to hear and I focus on each knot, clinging on. And the nights. At night I dream. At night there are the corridors. Endless gleaming, sterile corridors that I have to walk. My head pounding beneath the flickering strip lights, but I have to keep shuffling along. Someone's waiting for me at the end. I'm sure they are, they called. It hurts and I grit my teeth. I swear a little. No-one is there. It's just me and the endless shining, white corridors. I'm always alone. (So very alone) Every time I think I'm at the end there's another corner, another endless corridor. I start awake, bathed in sweat, dripping, the bed drenched. I reach for the tissues and mop myself, my hair, my chest, my back, my knees, my face. I try to sleep again, and I'm straight back to the corridors. And the sweat. And the corridors. And the sweat......Until dawn comes and I hear the cuckoo that lives in the tree above our tent. In the French sun I sit and watch my life. It goes on, a seamless joy of baby giggles and water splashes, of jiggling rides on Daddy's shoulders and grazed knees - Daddy picks them up, Daddy cuddles it better. Tired, or hungry, Daddy is there. And I watch, the gap in the scene is me. I've been gone so long, life moves on. I sit because I can't climb and dive and plunge. I sit because it still hurts. I sit and I watch my life. Sometimes, they remember me, a small, shivering bundle of chlorine and droplets hurls onto me. I wince, but inside, fearful they won't come again. I shiver from their cold skin but only when they've gone. I watch them run back, all knocking knees and chattering teeth and delight and I weep, silently so no-one sees, wondering if it will ever be me again who soothes the tears and picks them up, whirling them round in joyous circles, rubbing away the shivers, cuddling them to sleep. "Mummy has to sleep" Do they ever remember the days I didn't? "Mummy has to have her medicine" Do they think I love it and need it more than them? I eat the moules mariniere, but the soundtrack in my head says "you nearly died" I chat with other holidaymakers, but I want to tell them I just nearly died. Elvis sings, unexpectedly and mawkishly about "little Tommy", together they'll find a brand new Mommy, and tears spring to my eyes at the bar. I try to read the novel I brought with me. The mother dies in the first chapter and I hurl it away, the pages fluttering loose on the wind. I can't breathe. I look up and people on their civilised tent verandas are watching me, a question in their eyes. I look down at the ground and go inside. I nearly died, I nearly died, the rhythm of my wheelchair crunching over stones. I've nearly died before, so many times and there will be so many more. So far, I've held on to the rope. There's a stone in my chest. It makes it hard to breathe. It's made of tears I can't cry. I want to sob until I sleep. I want to cry and cry until salty and damp, there are no more tears left. Instead, I swallow past the stone. Every now and then I wrench in a painful breath. It sounds of pain and ripped dreams, of ragged edged fear and exhaustion. The strangers look puzzled, they ask if I'm ca va? Do I need anything? I smile, swallowing the stone back down. I shake my head because words can't get past the stone. I focus on breathing in a way that doesn't frighten them, but every now and then another sob breath comes. I cough or look away until the stone is back in place. It will fade. I will slowly drag my whole body from the icy water, knot after knot. If I'm really lucky, I may get to lay on the deck for a while. The corridors will get shorter. One night there will be a window with a garden outside. People will start to walk with me. The sweats of horror and chemical-onslaught will pass. I'll forget I nearly died as slowly, scene by scene, I get busy living again. I'll be mummy again. The stone will shrink. As I swallow it down, one day I will realise it's gone, that I'm breathing, in and out, automatically, that breathing is smooth and natural and calm. Eventually, I will see that flesh has covered these bones again, that you don't need to wince any more when I shuffle past in leggings or shorts. I'll be "fine" again. But every time, I'm a little less "fine". It's a little harder. The rope is a little longer. The waters a little rougher. The corridors a little longer and brighter and lonelier. (So lonely) Daddy a little more Daddy, Mummy a little less Mummy. The fear and sweat a little colder. The stone a little bigger. Death a little closer.
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I am feeling so much as I read this and not sure how to put it into adequate words.ReplyDelete
Recently I read the novel 'Room', (SPOILER ALERT) which is about a woman who is kidnapped aAnd repeatedly raped and held hostage in a tiny room with her 5 year old son. For the first 3 parts of the book we are there in the tension of 'will she escape? Will they die?' It's almost unbearable. Through it all, she is portrayed as this amazing mother, strong and resilient. Then she escapes, and the remaining 2 parts tell the story afterwards. In many ways, the afterwards is much, much harder. She highlights the way that people just expect you to be 'over it' because it's over and life's moved on - and yet that is the point when your body has come out of sheer shock and adrenaline and has to cope with the massive emotional intensity of it all.
I sobbed my way through most of the book. It was painful but cathartic.
I hope that the writing brings you some kind of catharthis. It's not much, in the general scheme of
things, but it does help.
Sending you much, much love.
Get your strength back Sue xxReplyDelete
You are such a strong person Sue, but you are also human and have been through so much health wise for such a long time now. Your words are so truthful, I feel a sense of understandable depression, not fully there yet as you seem to be desperately trying to climb away from its grips. It's such a battle to survive and becomes so tiring to fight; do know that you are not alone and you will get to the top of the rope. As Tanya said "I hope that the writing brings you some kind of catharsis" and you will reach out for any help you may need. Sending you best wishes, love and keeping you in my prayers.ReplyDelete
Let yourself feel it. Let other people see you feeling it (like you are, here, by writing it out).ReplyDelete
But don't let go of that rope. xx
Sue, the only thing that I can say after reading this is to echo Bill Kruse's comment and to add, that I'm sure all of us that read your blog would want you to know that we are willing you to recover. Enjoy the sunshine and know that there are many of us that are so relived that you pulled though an awful experience.ReplyDelete
I admire you for speaking out so eloquently. I have an incurable illness which effects my mind and I am tortured by the State who are prosecuting me for trifles I cannot even remember.ReplyDelete
There is hundereds of thousands of pounds in the kitty to prosecute people like me who have harmed no-one and caused loss to no-one just been a bit crazy though illness: but there is no money to give disabled people a chance of leading a useful life
I know of that loneliness, but keep hanging on Sue,we all wish you well xReplyDelete
Brought tears to my eyes Sue.ReplyDelete
Coping with and adjusting to ever declining chronic illness is hard enough; just that on its own. What is harder though is that you have a young family that you are forced to go missing from, and you also have to manage their feelings about your illness, along with wider family and friends. Knowing full well that the trauma that you have just recovered from will only happen again; almost too much to bear, but bear it you do.
It's so unfair. How much physical and emotional trauma can one person face in life? I don't believe that 'what doesn't kill you makes you stronger'; you never really fully recover; the nightmares never fully go away.
I hope though that you start to have 'little windows' of happiness again Sue; you surely deserve it.
There is a very big corridor...it's massive, lit like a theatre (and you didn't need me to tell you that). Everything about it is antiseptic. No doors. Just white tile. White white whitewhitewhite...ReplyDelete
But there _is_ a door. You'll have to close one eye, then close the other, then blink a few times to see it. As thin as a hair, just a crack. It might be on the left. Or maybe it's on the right? Maybe you're standing on it. Or maybe it's over your head. Behind you. Before you. I don't know where it is exactly as it changes every time. But if you can manage it - if you don't get caught in the despair of the white labyrinth, if you can manage to hold on to the rope a bit longer, you'll find it. It needs words to open it, however. Words only you know. Words you can whisper with your whole heart. Do that, and the door opens, and the white halls will be gone a while.
Only a while, darling. They're always there. I know them well, and I know where some of the doors are. The Other doors. Those are mine, I tend them like a garden. I know the words to open those too. And that's the message I will give you - if you find you decide to let go of the rope and let the boat sail on, I will show you where the merfolk swim beneath the waves. If you decide you've had enough of wandering the white halls, then merely say so. And I'll make sure the Other door is open. Don't worry about anything else...it will be fine. There's enough of us that we'll be sure it will be fine, and time will mend all things as ever it does. Things will go as they should.
And I offer this to you, my sweet, as I've offered to many. It's not an endorsement, just an offering so you know it's there. The white halls aren't as empty as you think (and that sounds more terrifying than it is). You just can't see me watching there - behind you, or before you. Above you, or beneath you, waiting for you to decide which way you wish to go.
But you are not, and never will be, alone. No matter what. On that I give my word.
Are you people real???? You all spend so much time and energy writing about yourselves, no wonder you can't work!!!!Delete
I think it's more to do with chronic illness actually, you ignoramus.Delete
To The ignorant Anonymous person who didn't even have the courage to name themselves:Delete
How nice it must be in your cosy life. To have never come into contact with debilitating illness, disability or struggle for survival. Oh to live in your cocooned little world. You are clearly a very young soul with so very much to learn yourself. I pity your ignorance and I hope, for the sake of those around you, that knowledge and understanding doesn't find you in the worst way.
So when someone writes a platitude, a patronising "pat on the head" that is ok, but when it is a criticism, it is not? Strange outlook!!!!Delete
For people with such "debilitating illnesses" you expound a tremendous amount of energy writing your blogs! What about a career in computing.
This comment has been removed by the author.Delete
To The ignorant Anonymous person who didn't even have the courage to name themselves (again):Delete
If you wrote a fair criticism then that would be considered as discussion. You did not do that. You wrote an uninformed insult to a woman who is at her lowest ebb having nearly died.
So, yet again you show your ignorance. How long do you think it might have taken Sue to write this blog entry? How much time and emotional effort do you think it took her? In terms of time and productivity, do you think it might be comparable to the demands that an employer would put on her in the workplace? Of course it isn't.
If you look back on her previous writings you will see a lady who has worked very hard for a cause which she and many others believe in. Her recent hospitalisation and near death is what happens when you are actually ill and work long hours. We are not talking about a dose of flu or a headache. We are talking about real, severe illness which could (and does) result in death.
Try and remember when you were the most ill you have ever felt. Now try and imagine the type of illness where you struggle to get out of bed. Not because you don't want to but because you physically cannot. Now imagine that you have that feeling ALL of the time. Imagine yourself being forced to work when just moving causes pain and exhaustion. Imagine not being able to do the basic things that everyone else takes for granted, no matter how much you want to. Can you even begin to imagine what that might be like?
Did you not read what Sue wrote? She has been in hospital for some time and she nearly died. Again.
I don't know why I am even bothering to discuss this with you. As the saying goes, "Arguing with ignorant people. It's like playing chess with a pigeon. No matter how good you are at chess, the pigeon will knock over the pieces, crap on the board and strut around like it's victorious."
You are clearly a pigeon.
As I said, there are other anonymous posts on here but as they are not critical that is ok? If it is an insult to say that continual blogging must be time consuming and draining, then you have led a very sheltered life!Delete
The insult was the suggestion that Sue can't work because she spends so much time and energy blogging.Delete
I couldn't give a crap whether you think I have led a sheltered life. You know nothing.
Why would anyone want to criticise another human being for sharing their worries with like minded empathetic people who understand what it is like to experience ill health and become so unwell that they might die? When you can't leave the house and pop down to the pub for a chat with your pals, or turn to a sympathetic ear because you're isolated and alone and trapped indoors with illness, what do you do? Maybe you have no one in your life to turn to when you are down or afraid or need advice anon, so you attack those who get the attention you are so clearly craving for yourself. So what if people lead sheltered lives? Who are you to dictate to anyone what their life should be or what decisions they should make for themselves? Don't you think you're over exaggerating to suggest that anyone is engaged in continual blogging? Round the clock writing would be quite a feat for anyone. How long did it take you to not think before you made your comment and write it? Seconds I would guess. So the ability to convey your feelings articulately in words makes a person fit for work in your opinion? I see, what a shame then that employers might not share your optimistic opinion.Delete
Quite right, Sue and many other people here are highly intelligent and educated and capable of some remarkable posts and comments. Perhaps you would feel so much better if everyone fitted your biased stereotyped view of incapacity and stayed in bed all day watching Jeremy Kyle? With all due respect, please do naff off because you don't offer anything helpful or have anything worthwhile to contribute.
I have said it before my friends, trolls are good. They show the world why we write at all. 2 sentences from such ignorance makes our point for us 100 times over. So thank you Anon, do carry on.Delete
Now, silly boy ( oh, I just know....) Take a look, How many posts did I write all of last month? 5. All from a hospital bed, fed into my main artery to keep me alive, bombed on opiates to keep me from screaming, anti-sickness to keep me from vomiting. Now, do you know of any jobs I might have been doing instead?
....cont the post you are commenting was written at 4 am, the witching hour when Nightmares seem so real. I types on my phone with one finger, laboriously copied it over to the blog when I could. Do you know any jobs I can do from bed with one finger for two hours at 4 am?Delete
But, my dear, as it happens, I wrote an article for the Guardian the day they discharged me on opiates, I had an atrial fibrillation in the middle - could you have done that?
I wrote another a few days later and had to stop to vomit every ten minutes. Could you have done that?
Now, who is the Obe making platitudes?
I just wish trolls would TRY a little harder. It's embarrassing really, no arguments to make, no challenge for me at all.
I think no one seems to understand how it feels after you start the long hard process of getting over that kind of experience. No one thinks that you are thinking over and over in your head "I nearly died". I've had two experiences like that, the first 11 years ago and the second 9 years ago. They still haunt me, especially when I am in a great deal of pain, which reminds me of what the worst can be. I wish people could understand how much that "nearly" can haunt you, especially when you know you are never going to recover completely.ReplyDelete
However, you know, as do I, that you wil get through this, you will be fragile, you will hurt and you will grieve and you will carry on. You will get your mind back, you will get more of your body back and you will start to reclaim your life, but you have accept that nearly dying will change you, each and every time it happens.
I wish you a steady recovery that will allow you time to heal your mind as well as your body.
I have so little that I can articulate about this, except that you writing so beautifully, so frankly, so publicly, I'm sure has helped people who have read it and will help people who will read it. I hope it has helped you a little.ReplyDelete
I am always with you
Even when you feel
You walk this corridor alone
I’m in your heart
And always close bedside you
In the cold, harsh waters
I am with you when you fall
When you hang on
I am the whisper who will say
To the rope that drags you along
Like the coat-tails of a close but far of land
Into a new world with a different song...
I read this and hear my Dani. My words are inadequate. Just feelings, wishing to reach out and hug you without hurting you.
You inspire me greatly.
you'll never forget but you WILL be able to look back at this as a distant fuzzy memory. Terror will become a puppy dog that you can tame. Serious illness is a dreadful shock to the system and you'll feel fearful until you're stronger. As always- Love and Prayers.ReplyDelete
You are brave to share these deep and personal experiences. In doing so, you do so much to help others who may be experiencing their own private endless white corridors of fear and pain. I can only wish and hope that little by little, you will gain some modicum of strength and improvement in health. I'm sorry, this sounds so inadequate.ReplyDelete
I've been there too, i could not have put it as eloquently as you but i was all there.ReplyDelete
I nearly died buzzed around my poor addled brain for a long time but what i didnt realise at the time was, i lived through this.
It was with me for a long time, my children were there but not with the mummy they knew. I was weak and scared and sometime jelous of their innocence and health.How harsh does that sound.
It was a sign i was recovering from a lot of stress both physical and mental. My poor body had been full of fight to sustain life for so long i had forgotten how to really live life.
We all have the drop from stress where we feel 'how and why did this happen'
Know that we can all be there to support you through the rough times as small words well meant can help in a small way.
I wish you well in your recovery, and that you can hang on to those small glimpses of 'mummy'as they mean the world to your children.
Thank you for putting into words how desperate that feeling is and i hope you can look back in some months and see the the corner that lead you from those corridors, through the door to your future.
Sue - are your receiving DLA and other benefits now? You certainly should!ReplyDelete
Edel - Christ Sue you are really bringing on the holiday cheer. You bloody got there love and THAT is my focus. He is amazing and what you don't see is those boys lighting up at every thought of you.ReplyDelete
Love you and looking forward to more anarchy, fun and even child care. You are a beacon and don't remember to be bloody proud - that is not to disallow your melancholy though my love.
Sue, I think it's important that you articulate these feelings and allow your brain to move through and process them properly so that you don't get fully trapped in the PTSD cycle.ReplyDelete
These physical and emotional reactions only a few weeks after these experiences are actually quite normal (although horrible) and this is exactly the right thing to do with them. Break their taboo, work toward changing the ending of the corridors rather than bottle them up. It might not fix it but even if you need to seek help with post traumatic thoughts elsewhere it will be a good start.
Best of luck.
Thank you for writing this Sue, what you've said is important. I can't say any more through my tears.ReplyDelete
Oh Sue - I only just read this. So moving. Thanks for sharing and I hope it got you a little bit further forward just putting it down on paper. Keep getting betterxxReplyDelete