The Spartiquilt

What is Spartacus? So many people have asked me, but how do you define a moment in time? A need? A defiance? A refusal to be defined by ignorance? It was and is a reclamation of self, a declaration of inherent worth. Thousands of voices speaking as one. "I am. I fight. I win. I have never given up and I never will." "I will clasp my pleasures close because Life has taught me their value." "I will fight for justice because I learned long, long ago that life is not fair" "I will endure with grace and hope and dignity because I know so well they are all any of us can ever keep close" "When you hurt me, I will smile and help you" "When you are battered and bruised and low, I will be there, and I will be the one who truly understands your pain" "These are my values. This is what I am worth. This is what I can give. If you stop the mad rush of life and listen, you will hear me. I am there and I have learned strange and wonderful things" "I cannot be beaten. You were wrong." A while ago, some people on blogs and twitter, people who instinctively knew Spartacus, felt him in their blood and their painful bones, had an idea. They would make a spartiquilt. Square by square, they would capture our moment. Stitch by stitch, moment by moment, they would show our hearts and dreams. I imagined the pioneers. Women of silk and steel, of hope and fear, of doubt and belief. How they crossed the great plains, never giving up. How they came together to sew their stories into painstaking beauty. Like us, they had time, even when they had nothing else. Like us, not all of them would make it, but in their art, all would be remembered. Like us they craved comfort above all, craved the life they used to know. Like us, they had a story to tell that few would believe and fewer would ever truly understand Like us, they were rarely heard. Like us they found a  quiet community to counter the individual,  reckless ambition that surrounded them. Like us, all they could leave was a testimony with a quiet fortitude and a precious hope. Not fragile after all. Not weak at all. ************ If you would like to make a square, it can be anything at all, details are here : http://www.spartacusforum.org.uk/forum/index.php/topic,396.0.html You can get info and ask any questions and there is a link to a dedicated #spartiquilt blog. I can't sew to save my life, but I left a poem I wrote that means a lot to me. The brilliant #spartiquilt ers will somehow transform it to a quilty squary thingy for me. Please, don't be shy, don't think your idea any less than another. Quilting brought all together, valued every stitch, gave everyone equal power and worth. Whatever you want to do, just do it and I swear, I will make this the most famous quilt for a generation. Because that is Spartacus. Alone we whisper, together we shout. ** I don't mean to imply that #spartiquilt is only for women, the pioneers were just an example. Anyone who is sick or disabled, their friends, families The fab guys at @InkwellArts have let us use their space, Tuesday 11am-1pm, Leeds, if anyone can physically come along and join in but do get in touch if you have access needs. @fibro_girl @clareOT

Recovery

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.

Atos and the Paralympics

For anyone who might be interested, here is a slightly longer (original) version of the article I wrote recently for the Guardian about Atos and the Paralympics.

"I love the Olympics. One of my earliest memories is of the entire family setting alarms for 4am to watch Robin Cousins win gold in the ice skating. We always watched every event, from archery to synchronised swimming.

I loved the superhuman excellence, the sheer grit and determination on the faces of the athletes. The dedication to perfection, the sacrifice that meant nothing – nothing was more important in their lives than that finish line or target.

I clearly remember the first time the Paralympics came onto my radar. I watched, literally open mouthed as Tanni Grey-Thompson set her eyes on a distant prize, gritted her teeth, shut out the thunderous noise of the crowds, then hurtled down the track with such speed and grace, it was hard to believe she had any kind of disability at all.

I was similarly awestruck by my first glimpse of the seemingly bionic Oscar Pistorius. As he raced down the track on those incredible prosthetics, I could hardly believe my eyes. Did I enjoy his achievement more because he was disabled? I think I did a little. That same sense of overcoming great challenges that I had always so admired in traditional Olympians, magnified 100 times in a man determined to be the best, whatever the odds.

When I heard that the UK had won their bid to host the 2012 Olympic Games I was thrilled. I saw it as an honour, a wonderful chance to show these superhuman athletes the respect and honour they deserved. To celebrate their achievements, and though I was ill myself by then, to actually have the chance to go to some events! I told my children about how wonderful it would be, described the atmosphere, saved every penny I could.

My first disappointment was the price of the tickets. I’d saved £1000, determined my children would get to take part in this historic, once in a lifetime event. But I wanted them to follow an event through some heats and a flagship final. Even my £1000 wasn’t enough, and even if it had been, the finals were all way to late in the evening for small boys. Soon, accounts of corruption and corporate favouritism emerged. Most of the best tickets would go to dignitaries or corporate sponsors. I was heartbroken.

Soon stories emerged of corruption all through the event – billions spent on terrifying security, a budget out of control, decadent perks for the Olympic committee that read like the last days of Rome. A dedicated traffic lane that could only be used by VIPs and sponsors. Still the budget raged out of control, mocking austerity Britain. More security, drones above the stadium, a London more evocative of the Gaza Strip.

But as a disability campaigner, the greatest injustice had to be the day we heard that Atos would be sponsoring the Paralympics. The very company charged with denying disability on a national scale through the government’s flawed and dangerous “Work Capability Assessments.” As hundreds of thousands of “everyday” disabled people were hounded and humiliated into poverty, told they were fit for work with kidney failure or paraplegia or MS, the same company had the cheek to buy a slice of this very “superhuman” image of disability.

It seemed utterly symptomatic of a corporate culture, out of touch and out of control. As Murdoch crumbled, the Met were exposed as complicit and corrupt, as our politicians fiddled their expenses, it seemed somehow fitting that a company hurting so many disabled people should sponsor the Paralympics. Dow Chemicals got in on the act too, causing India to threaten a boycott, MacDonald’s, that ultimate purveyor of junk food sponsoring the pinnacle of fitness; the very last gasps of decaying capitalism seemed to preen her feathers.

Some have called for a boycott of the Paralympics until Atos pull out. Personally, I think this is the worst possible thing we could do. Do the athletes who gave their every waking moment to be the best deserve to have that taken away from them by a company already responsible for the suffering of so many sick and disabled people? Is there any greater contrast to the arrogance and greed of the corporate sponsors than the selfless dedication of human beings who simply want to be the best they can be?

These same companies will try to tell us that these paragons of disability prove that anyone can do it if they only try. This is no more true for disabled people than it is for the able bodied. Very, very few of us are born to be the fastest or the best. But we are born to try, to strive, to overcome and to achieve our own greatness. May the incredible feats of our finest athletes – whether disabled or able bodied – remind our corrupt elite of what it is to be truly brave and decent.  

On arriving home from hospital

I wrote this years ago, after a long hospital stay. You never truly appreciate simple things until you've been deprived of them. Just a warm breeze on your skin, a kiss from your child, the light flickering through leaves on the table, gives more joy than I could possibly explain.

Warm.......

Comfy.....

Sensory overload. 

Fire flickers, Dave,

Sinatra ears and Chablis ice lips

Purple Haze, nowhere to be. 

Slade & chestnuts, Christmas shopping, scented trees and Dad's beef stew. 

Aloof cat, (loves me really)

Colour! Scarlet! Azure blue!

My Red Bed!

My Golden Seaside

Comfort and presents and diamonds. 

Food, friends and free will.

Freedom! Freedom! Freedom!

Utterly helpless to In Control

Horribly frightened Quietly Calm

Truly alone to Wrapped up in loveliness

Six year old child to Entrepreneur

"Needs to be sectioned" to "Wow, look at her!"

Starchy linen to Fake Fur

Deprived to Spoilt

Prose into Rhyme

Bursting with life after thinking I'd die. 

Hoist by His own Petard?

Phew. Thank goodness for that! "Worried veterans" will now be exempt from "humiliating retests" that could have seen them "stripped of vital cash" They will no longer get the "same grilling as cheats and scroungers."

You know, all those cheating cancer patients, fraudulent layabouts on transplant lists, feckless paraplegics and lazy lummoxes with cystic fibrosis, muscular dystrophy and cerebral palsy.

The thing is Mr Cameron, I thought you said the tests would be fair?


I thought you said "genuinely disabled people" had nothing to fear from disability benefit cuts?

I thought you said we needed a humiliating grilling to ensure we got the right support? What if our "brave heroes" don't get this promised support? How will they find work? How can you be sure they won't just "fester"?? Are you not "abandoning them to a lifetime on the scrapheap?"

So which is it Mr Cameron? If the tests are fair, then surely ex-military personnel have nothing to fear? If they are not assessed, how will you avoid all the festering?

If the assessments for sickness and disability benefits are not fair, then did you not ought to be booking a one way tickets to Strasbourg, to attend a trial over the breach of human rights of over 5.2 million disabled people?


What of other limbless souls. Is there something more inherently worthy in losing a limb in battle than losing one saving a child from an oncoming train? Is a soldier with PTSD more worthy than an aid worker? Is an airman suffering terrible disfiguration from artillery somehow more disfigured than the woman who had acid thrown in her face so she could never marry the "wrong" man. Are you sure they're "more worthy"?

Or is it as many of us have known all along? The tests are a "humiliating grilling" "genuinely disabled" people will be "stripped of vital cash", and you don't care one tiny bit unless the disability fits your Eton-narrow view of "worthy"? 


To maintain the military metaphor, I believe Mr Cameron, you have been hoist by your own petard sir. 


**********


By the way, I absolutely refuse to fall for their divide and conquer. I'm delighted for those service men and women who no longer have to live in fear. Every step forward is a step in the right direction. I just hope they will join with the rest of us to stop the persecution of all sick and disabled people.

Surgical Roulette

So, the surgeon came to see me yesterday afternoon.

Unfortunately he'd gone from "Not sure it's bad enough to do anything" to "Not sure how much we can save"

Apparently, the 4th blockage was so narrow, my consultant couldn't even get into it. There was inflammation in between the narrow bits, or "active disease" as they like to call it. The whole ulcerated, pussy, bleeding mess of it is gonna have to go.

Cue next wave of shock at the overwhelming effectiveness of my denial. Whining "But I didn't even know" is not proving very helpful.

So, a resection. Cutting a bit away. I haven't had one of those for 15 years!!! It is Not Good News.

Resections are more dangerous. They have to cut a section of bowel away and join the ends back together again. Cutting through the bowel risks sepsis - if any bowelly matter escapes into the blood or the join leaks, Suey will be in trouble.

With a resection, the whole bowel takes a nap. The shock literally paralyses it and it will only wake up in it's own good time. Usually 4 or 5 days, but sometimes never.....

Resections are more painful. You have the external cut and the internal one vying for attention.

Worst of all though (the one we rarely even whisper) is you only have so much bowel. Mr Gaunt-Looking-Surgeon reminded me, in that matter-of-fact way that surgeons do, that I don't have much left. You lot have about 4 metres, I'm down to 1.5. Continuing his mechanical appraisal, he reminded me that you need at least a metre to survive. Odd how surgeons leave statements like that hanging, as though I could somehow stop frivolously wasting bowel.

I didn't ask what then.

So, we start to fervently hope that my messy-bit is less than 50 cms long. Preferably waaaay less. Mr Gaunt-Looking-Surgeon thoughtfully reminded me that I'm only 39 and will certainly need more surgery in the future. The phrase "conserving all we can for next time" hung in the air.

There are lots of things I never think about. Close friends and family know the unwritten code. We never talk prognosis or consider "what-ifs" We pretend that we don't know how high my risk of bowel cancer is or how badly my osteoperotic  bones have already been eroded. But most of all, we don't discuss the TPN people.

As we speak, the lipidy, fatty gloop is drip-dripping into my main artery, plopping just above my heart. At this stage, it might as well be life support. I'm dangerously underweight, my bowels are all cloggy and without this frankenstein nutrition I would die. I look - even feel - remarkably sprightly for someone at death's door, but there we are.

I've joined the most unfortunate club in the world.

But real TPN people, well, they never eat again. Nothing. Ever. No lazy brunches, no coffee with friends, no  early cocktails or ice-crystal gin clinking in the sunshine. No champagne at weddings, no decadent chocolate treats, no consoling chicken man-flu soup, no anniversary dinners.....

This is the "less than a metre" fate.

I said I'd never do it, said it was a bridge too far. Funny how you never know exactly how far is too far until you get there, eh?

Oh well. Following this uncharacteristic consideration of the dark side, shall we pretend we never spoke of it? I prefer it that way.

And one last thing. I will be asking to keep the putrid mess they hack away. I'm not sure if they'll oblige, but I'm going to ask if they can cut it into four pieces and seal them in separate jars. Then, when I'm well enough, I will send them as gift baskets. One to Mr Duncan Smith, one to Mr Freud, one to Mr Grayling and one to Ms Miller. I hold them personally responsible for this particular crisis.

Mainly, because opposing them had to be done and it nearly killed me, but a tiny, tiny part of me may have believed them. Believed that if I just tried harder, worked more, ignored my symptoms, stopped being such a wimp, addressed my "illness behaviour" I really could work again.

The rotting, stinking, evil mass I will be sending them, seems a fitting reflection of their black hearts. Maybe, just maybe it will convince them that forcing people to work who are clearly incapable of doing so is murderous.

*******

Oh, and PS, let's not forget my claim for DLA was rejected, social services can't help me and there are no descriptors for ESA that would mean I qualify. According to our politicians, I'm just fine.

Just not Right

When  people ask, I have two default positions,

"Not too bad" and "Just not right"

"Not too bad" is my situation normal - diarrhoea, tiredness, sometimes pain, a sprinkle of malnutrition and a pinch of nausea. The hardest thing for people to understand who aren't ill, is that I really don't notice any more. It doesn't hurt less, I don't feel less sick, I just don't notice.

On a bad pain day, I don't realise until I find myself crying because I've run out of milk or when my kids spill a drink. I'm "fine"

When I'm not fine, I'm "just not right". I find it hard to be more specific than that. After all, I already feel ill, I already feel sick, I already get pain. "Just not right" is something on top of that. This time it's been an extra dollop of exhaustion and a string of chest infections. I didn't think I felt too bad, but it was harder and harder to make it to school to collect the boys, harder to get round a supermarket. The exhaustion that I always feel became an insurmountable mountain.

After weeks of tests here in Addenbrookes, I had a procedure yesterday (colonoscopy) They had found a suspected narrowing in my bowel and thought that if they opened that out, the other symptoms might just fade away.

If you're squeamish, look away, but a colonoscopy involves shoving a tube up your bottom and weaving it up and up and up until it get's to the right place. It's very unpleasant.

Yesterday afternoon, procedure completed, a rather nervous looking doctor appeared at my bedside. She had a look of awkward pity on her face and long term patients know that if a Dr looks at you with pity, it's not going to be good news. It takes a lot to invoke pity in a doctor.

It turns out that, yet again, I was riddled with crohn's. My poor consultant had opened up THREE narrowings, but when he got to the FOURTH it was too tightly closed and he had to give up. In between the narrow bits was active disease, something I hadn't thought they would find at all. Basically, I'm a checker-board of obstruction, inflammation, obstruction, inflammation...... Again.

But there's more. The gamut of tests and tubes have found that I also have bronchiectasis - a lung disease that makes you more prone to chest infections. Exhaustion is one of the main symptoms.

Erm, and something else. They found I have Addison's disease too. My adrenal glands have packed up, leaving me low on adrenaline. The clue is in the name. Exhaustion is one of the main symptoms. It's getting a bit clearer to see why I couldn't make it round Sainsbury's eh?

If I stay in here much longer, I'll have a disease for every day of the week.

Ah well, sometime soon Mr Gaunt-Looking-Surgeon (or if I get lucky, Mr Genius) will re-appear and set a date to unzip me (again) hoover me out (again) and patch me up. (again)

They'll be setting up a central line feed into my artery, so I don't waste entirely away before surgery. I'll just keep sitting here with my West Wing DVDs and toffee bon-bons trying not to think about anything very much.

I miss my babies, my Dave and my lovely, sunny flat. I miss my elephantine beanbag and tea that is actually hot. I miss chilled wine and home cooked meals.

Most of all though, I think I miss the denial.