29 Sep 2017

The Anniversaries

My dad said, rhetorically, on the anniversary of my mum going into hospital "Why do the anniversaries hurt so much? What makes that day different? Why a year and not eleven months and two weeks"

If only the anniversary of Mum's death was one day. If only the whole of autumn was not stained by loss. My mum lay dying in the garden as the leaves turned yellow and red and brown, and as they fell from the trees, her life fell away. There were conkers and chilly, bright days. There were crosswords, and quiet reading wrapped in fleeces, and five different drinks in case she got thirsty. There was family everywhere, always. The fairy lights twinkled around the garden. The rain swept in and our frightened tears turned to a strange mix of waiting and desperation. It turned cold. Mum still went out for a fag, even if she forgot to smoke it while she was there. And she slipped away quietly, without an audience, on a dark October night. That day was eleven months and two days ago. That day, to quote my six year old, was ages ago. That day may as well have been yesterday for all the difference time makes.

They say time is a healer, and they are quite right, but grief is an unfathomable chasm to cross. It is far easier to say she died eleven months and two days ago than to admit she will always be gone. The first anniversaries are always the strongest, whether it be a happy anniversary or a bad one, but I have no illusions that everything will be fine in a month's time. Or another year. The shock has faded. The reality is unconscionable. The memories, some wonderful, some unpleasant, churn around and keep me awake.

I am flattened by grief at the moment. I wake up exhausted regardless of how much sleep I get, and my head hurts, and my eyes are swollen, and my body is numb. It's as though I have cried all night, but I cry so rarely. I sometimes wonder if my soul is crying all night and my body just hides it away. Maybe I'm doing the grieving in the background because I ensure I have too much to do to ever let it overwhelm me. The slightest hiccup sends me floundering without anchor.

Anniversaries are hard. And when a whole three months is anniversaries, it's even harder. We will endure.

15 Aug 2017

I Miss You

To grieve is to be human.

We all love. We all lose people we love. It never feels timely. It never feels right. There is a grave injustice implicit in loss. There could always have been one more day. One more perfect day, spent well in good company. There is so much regret. There is so much to miss.

Grief is so lonely. For such a collective experience, there is isolation in grief.  Those who know grief understand. Those who have not yet experienced it are wary, struck dumb by not wanting to say the wrong thing or full of platitudes. Lord knows, it is hard to say the right thing.

For the one grieving, there aren't words. There aren't words invented to express the spectrum and depth and breadth of grief. There aren't words to describe the cold-water shock of the world without them, the torrent that sneaks up to engulf you when you don't expect it. Metaphor and simile are a poor substitute for the silent, numbing, screaming agony of loss.

It was my third wedding anniversary last week. On my first wedding anniversary, I had a month old baby. My mum made me and Tom a three course, takeaway meal and looked after the baby for an hour so we could nip to the pub where we had our wedding anniversary for a drink, and the kids for a bit longer so we could eat our takeaway meal in peace. On my second wedding anniversary, I held her hand in hospital. This year, we went out for lunch and as we were leaving, I went to grab her a menu*. And then I remembered.

The slings and arrows of grief come suddenly, from nowhere. It has been nine months and nineteen days since I saw Mum breathe. I have not recovered from the shock of a loss we knew was coming for three months. I have tucked my pain away in a pocket called "later", holding it at bay for a time when I have time to consciously grieve. But there will never be time, so instead it lies beneath the surface and comes spilling from the blue, particularly at this time of anniversaries. The anniversary of her initial illness has passed, so has the anniversary of her diagnosis, and her hospital discharge. But the next few months are chequered with memories of the same days of last year, those nightmarish, weird, unreal days of happiness and fear, joy and pain.

I wrote last year how I might not get to taste my mum's roast dinner again. And I never did. She taught my dad how to do it, but it's not the same. Such a tiny thing to pierce the soul. There are millions of tiny needles, just piercing the skin, each one labelled with something she did that she doesn't anymore, and sometimes they don't hurt at all. Sometimes they dig deep.

This is nothing unique. This is nothing special. This is universal. So why does it feel so lonely?

I miss you Mum.
In every single thing. In every phonecall I would have made. In every word I write. In every book I read. In every photo that you're not in.  In every photo that you are in. In every conversation I have. In every meal I cook. In every meal I eat. In every news story, in every tennis match, in every gathering.
And every time I go to bed, and every time I wake. And in everything the children do, and say. In everything I do and say. And everywhere I go.
In every sunset, in every sunrise. With every tide. On every single wave. In every shooting star. In every breath of late summer breeze.
I miss you. The world is not the world without you.




* Mum collected menus. She had hundreds, stolen from such diverse places as Spanish kebab shops and Rick Stein's restaurant in Padstow. The rules of eating out for us children were simple: nick a menu or memorise what you ate, because there will be questions.

21 Jul 2017

The EHCP! Part One: Applying

In the olden days of pre-2014, kids with Special Educational Needs and Disabilities (SEND for short) got Statements of Special Educational Needs. These were legally enforceable requirements to assist children through schooling. But the government got rid of most of these because they were legally enforceable and sucking up budget like nobody's business.

And now, instead, most SEND children get very little support at all. Schools are expected to fulfil children's support needs out of their budget. If they can't, they can apply for an Educational Health and Care Plan, which covers children until they are 25 and is supposed to be a more holistic representation of needs than statementing ever was. EHCPs have no force in law, but they do have to be agreed with the council and budgeted.
The government expect 2% of all school children to have needs that require an EHCP, which sounds suspiciously like a target to me, but I cannot be ARSED to do all the FOI requests to prove it.

To get your kid an EHCP, you first have to apply to the council. You can do the application yourself, or the school can do it. I have wanted to apply for an EHCP for Jim for two years, but this was the first year the school agreed they couldn't manage without one anymore. I would strongly advise getting the school on board before you apply, or getting them to lead the application. Your SENCo will know whether your child is likely to be awarded one and on what grounds. The application form is long and requires evidence. Lots of evidence. Evidence with clear links showing what has been done, what is in place and why this is not enough. For Jim, this ended up being seventy pages long. If you are even considering an EHCP in the future, check that your papertrail and the school's papertrail is in place. Get copies of every letter that pertains to your child. Be involved. Be honest.

Now, when the council get your request, they have four weeks to get it to panel. The panel comprises various experts in children's health and they decide whether or not your child gets an Education and Health Assessment (EHA). If your child does, then the assessment process begins. If not, you can reapply entirely or appeal. The council usually phone you with the results of the panel, and will advise you to get in touch with their parent-council advisor (also known as SENDIAS or SEND Partnership) for help.

Guess what happened when Jim's case went to panel?
They rejected it because the paperwork didn't demonstrate that his difficulties were due to his autism.
Yeah.
So, after taking advice from the school and the SEND partnership lady, we decided to go to mediation.

First, I had to apply for mediation with an independent charity. Although I did this immediately after receiving the letter from the council, it took me a week to get through to the charity because of being on holiday, and another week to set up the pre-mediation chat about whether to go for mediation or a tribunal. If I had decided to go to tribunal, I would have been issued with a certificate to say that mediation had been bypassed.

The mediation charity then set a deadline of when the mediation had to be done by, and got in touch with the council for a date.
I waited.
I waited a bit more.
Eleven days, in fact, I waited.
And then they sent me two dates, both after the mediation deadline date. Not only after the mediation deadline date, but in the first week of the summer holidays. Call me cynical, even paranoid, but it felt calculated to minimise the ability of school staff to attend.


I er...expressed my displeasure politely, agreed to the date and then waited.

While I waited, I spoke to the school, I spoke to the mediator in a premediation chat which formed the outline of my case and I spoke to the SEND partnership lady. And I stressed and I vexed and I worried. The problem with being Jim's sole advocate is that it is all on me. One wrong sentence, one form filled in on a bad day, and he gets nothing. The SENCo was confident that the council would overturn the decision but I was not.

Mediation day dawned. I had a very stressed week before, worrying. I mean, ultimately if you're unsuccessful, you just reapply. There's nothing stopping you applying every month until they give up if you want to. But it doesn't feel like that.

Mediation requires someone with decision making capabilities from the school and the council, the parent and the mediator. The parent can invite other people, including the child at the centre of the case. I invited the SENCo, Jim's TA, and the SEND partnership lady (who couldn't come). I decided not to bring Jim as the first day of the holidays is not the time to be dragging an autistic kid back into school. In addition, a man from the council who hadn't sat on the original panel attended, and the mediator. The mediation was held at the school, but you can request it to be held elsewhere if school is not neutral.

And so off we went. We started by signing forms - whatever is said in mediation cannot be used if the case goes to tribunal, no minutes are taken, and it's entirely confidential. We discussed Jim, and his issues, at great length, for two hours. I took my Giant Folder o'Jim and was able to evidence how long his issues have gone on for, and prove his behaviours have deteriorated. This is all important and useful. The decision was overturned.


An action plan was formed. In September, we will proceed as though the rejection and mediation had never happened and I will tell you all about the rest of the process when it's finally done.

If the mediation had not been successful, we could have proceeded to a court tribunal. As this is just for an assessment, the judgement would have been done on paper only - we would not have had to attend and all the paperwork from the initial application, the initial decision, and the mediation would have been used to make a final decision.

The other time you can request mediation in the EHCP process is if you do not agree with the provisions the council are prepared to make. The process is the same, but if you then go to tribunal, it is done face to face in court.

It's such a stress, but it's so necessary for a child like Jimmy with such a classic autism presentation. He's going into year four in September, puberty looms in the future, and it terrifies me. We began this process in April. It's now July and I feel like we're finally getting somewhere.

13 Jul 2017

Charlie Gard

Charlie Gard is dying. He's been dying since the moment he was conceived. He has mitochondrial deletion syndrome. To put it very simply, the batteries in his cells don't work. There is no treatment for his condition: it's extremely rare and where diseases are rare, you have to improvise as you go along. He has been in Great Ormond Street Hospital for months, kept alive by machines, because keeping him alive is all they can do for him. My family has personal experience with GOSH's genetics team and you'll find no criticism of them here. Where there is hope, they will do whatever they can.

But it's hard, so hard to accept there's no hope, especially in a child so small. His parents have gone to every single court in this land and in Europe, begging for a chance to send Charlie to the US for experimental treatment: experimental treatment that even the doctor advocating it admits won't save him. They have blamed GOSH's workplace culture, saying GOSH refuse to admit they may be wrong about his chances, his prognosis. Their case has gone, to use a rather grim medical term, viral. Donald Trump has stuck his oar in. So has the Pope.
Today, the case goes back to court, to be tried on fresh evidence that Charlie is growing. The hospital say he is not growing. His parents say he is. The judge says he wants proof, and will base his judgement on that proof.

There are several contentious points here:

Medical Ethics
Is it ethical to send Charlie to the USA for treatment? In the UK, candidates for experimental treatment must be able to consent, they must be kept safe, there must be a fair chance of a good outcome. Charlie cannot consent. There is almost zero chance of a good outcome. The reason GOSH do not want him to take part in the trial is because it will make no difference. The reason the US doctor wants him in the trial is because people with mtDNA conditions this severe rarely survive - he's a useful little guinea pig. The key ethic in medicine is DO NO HARM - do nothing that will make the patient worse. Now, Charlie's ultimate outcome is death whichever way you look at it, but there is real suffering implicated in making a tiny baby travel nine hours across the Atlantic, in intensive care, for futile treatment which may kill him in the USA meaning his parents will have to repatriate his body, far away from their network of support. If he survives, he will come home and continue to require high dependency care for the rest of his life. It is traumatic enough to have a child in GOSH, which is often miles away from the family home. To have that child on a different continent is many times more traumatic.

The Rights of Charlie vs The Rights of his Parents
I have seen a lot (A LOT) of people insist that Charlie's parents have the right to decide whatever they want for their child. This is, fortunately, absolute bollocks in law and in practice, to prevent child abuse. As soon as a child is born, they have rights in law to be protected by the state in cases where a parent could do them harm. As described above, the move to send Charlie to the US can easily be considered causing harm to him. No parent is capable of making objective medical decisions about their child, which is why ethics panels exist, which is why doctors try to work with parents to do what is fair to the child. This is why Charlie has his own advocate in court. His parents are fighting for his life at all costs. GOSH are fighting to end that life. Charlie is neither old enough nor capable of having a voice. He gets no say in this.
But his parents, his poor parents. They have the most difficult time of all. Not only are they fighting to save their child, however fruitlessly, they are fighting the state on this matter. When you have a disabled child, however small the disability is, you have to fight and advocate and it feels like the entire system is set out to be as obstructive and difficult as possible. The NHS is an enormously potent and powerful institution. Of course his parents want to take Charlie to the US. Of course they want to exhaust every single possibility. How will they live with themselves if they give up? Every parent would do the same. There may be an unreality about their hopes and ambitions, but he's their baby and they're with him every day. What else can they do but fight?

The Interference of Donald Trump
Urgghh, this man. In case you know nothing of US healthcare, they don't have an NHS. All their healthcare runs on insurance, to a capitalist model that doesn't really work (as previously discussed, it's very difficult to run a capitalist health market when the ultimate outcome of the consumer is death - no profit). Obama brought in an Affordable Healthcare Act (known as Obamacare) to try and implement universal healthcare provision. Trump and the Republicans FUCKING HATE the ACA. Not only are they dismantling it, they are also attempting to bring in legislation to give insurers more power to refuse healthcare to people with preexisting conditions - preexisting conditions like having previously taken contraception, having been pregnant, having been raped. The Republicans do not believe that healthcare is a right.
So, it's somewhat ironic to have both Trump and his VP, Mike Pence, shout that Charlie should be allowed to go there for medical treatment. It is likely that they are going to use this as a stick to beat the NHS with, and since the NHS is one of the bargaining chips that Theresa May has admitted she is prepared to use to establish a trade deal with the US, WE SHOULD BE CONCERNED.

The Interference of the Pope
The Roman Catholic church believe in the inviolable right to life. No abortion. No euthanasia. You would think that the Pope would accept God's divine will in this sort of situation. Apparently not.

Money
BUT THEY HAVE RAISED OVER A MILLION POUNDS!?!! It's not about money. The NHS regularly invest millions in treatment for dying children to improve their quality of life - essentially throwing that money away since it's not curative. But it works both ways. You cannot throw money at illness and hope it goes away (although, money sure helps).

The shift in media's tone has moved away from SHOULD he be allowed to have this treatment to WHY WON'T ANYONE SAVE HIM? There seems to be a total disconnect of the reality of Charlie's condition. If the court rules he can go to the US, he has the treatment, the treatment somehow works a bit and he comes home, he will STILL be terribly ill and disabled for life.

Sometimes, medicine can't help, and that's the real problem here. It's not about citizenship, the perceived failings of the NHS, the monopoly of GOSH, the court system, money, or human rights. It's about the fact that medicine is unlikely to help this child and that is a blow to the heart of us all. Our culture has a faith in medicine, that one day it will destroy death itself, and this sort of case reminds us that medicine is fallible, some illness is written on the genes, and any of us could have a child like Charlie.

25 Jun 2017

Racing for Life

Me, my siblings Eliza, Jess, Sooz and George and my sister-in-law Rosie are doing Race for Life 5k at Peterborough on Sunday in memory of our Mum.

My mum never saw an oncologist. She wouldn't go. She knew there was nothing they could do, so she wouldn't go. It made no difference. But it meant we were never offered genetic counselling or testing to find out if we carry the genes that make some women more susceptible to ovarian cancer. We don't even know for certain where Mum's primary cancer site was; the histology was not clear. Having endometriosis means I have an increased risk of ovarian cancer anyway, but my gynaecologist is reluctant to test me for the genetic fault on the NHS until someone else in my family gets it. As the oldest ovary-containing child of my mother, the test case is me.

My mum's type of cancer was unusual and incurable. Even if she had been diagnosed two years before, when we suspect it started, she would have been dead within five years. And she would have hated that. She would have hated the tests and the treatments, the desperation and the fear and the hope that led nowhere. I am glad she didn't know. As we come up to the anniversary of her diagnosis, I am glad that we didn't know.

But now we know.

We are not just racing for life. We are racing for hope. Hope for ourselves. Hope for others. Mum has not been the only cancer death close to us in the last year.

So we run (/walk) the Race for Life, and we hope that we live to be a hundred. We will walk around a field on a Sunday morning in the hope that we never have to go through this again. We will walk, we will sweat, we will giggle, we will pant because we are hopelessly unfit, and we will hope that if it happens to us, they will be able to help.

As of today, we have collectively raised £815 (+£167.50 gift aid) and we are so grateful. That's the cost of two MRI scans. The cost of two colposcopies to diagnose cervical cancer. Four prostate biopsies. Eight sessions of chemotherapy.

It's a lot. It's not a lot.

Please donate if you can, if not to us, then to someone who else who is racing or directly to Cancer Research.

August 2016 <3

14 Jun 2017

London's Burning

Imagine your house catches fire.

Imagine, worst case scenario, it burns down and the fire investigator declares it was because your electrical supply wasn't earthed, a dangerous, but preventable occurrence. Imagine, as you sift through the wreckage, how fucking furious you would be.

Now, imagine the above, but also imagine that you knew about this electrical fault. You'd known about it for years, and spent years trying to get the electrical company to come and fix it, only to be told it was fine and to stop making a fuss. Imagine your rage.

This is akin to what the people of Grenfell tower have suffered today. Because they knew their house wasn't fire proof. They knew there weren't enough fire exit routes. They knew the cladding the council had covered the building in was iffy. They knew what happened to similar tower blocks in the area. They knew. And they were absolutely powerless, as council tenants, to do anything other than try and get the word out.

Nobody knows what caused the fire. They've only just put it out; we won't know for months. But we do know that the tenants were formally advised to stay in their flats and put wet towels against the bottoms of the door in case of fire, because the fire wasn't supposed to be able to spread. The flats were supposed to be self-contained fireproof units. The tenants ignored this advice, and thank god they did, or they'd all be dead by now.

Some are dead. Many more are injured. And everyone who lived there has lost everything they owned. Perhaps that is the part that will resonate most strongly. We've all made the mental lists of what we would grab in case of fire, knowing deep down that we probably wouldn't grab anything in our haste to get out. There's nothing left of Grenfell Tower. It will never house anyone again.

I have seen many people say that this is a tragedy that shouldn't be politicised.
I did not see these people claim that terrorist prevention talk was politicising a tragedy after Westminster, Manchester and Borough Market. I did not see the people claim that dead Syrian refugee babies being washed up in the Mediterranean was politicising a tragedy. I did not see these people claim that talk of gun control after Sandy Hook was politicising a tragedy*.

Is a tragedy more or less political when it is directly caused by a lack of legislation?
Is a tragedy more or less political when it affects the poor rather than the unlucky?
Is a tragedy more or less political when it throws the unsavoury housing policy of the incumbent government into sharp relief?

More people have already died at Grenfell tower than died in the whole Great Fire of London.

When David Cameron began to gently dismantle public safeguards and services, he tried to package it as Building a Big Society, where everyone helped each other, so there was no need for governments to do it. Kensington has absolutely thrown itself into helping the people of Grenfell tower, with massive donations of money, goods and services. The badly cut fire and ambulance service has been out in force. But it should not have happened in the first place.

Ultimately, people should not have to face the possibility of losing all their possessions, their home, their loved ones and their lives just because they are in poorly tended social housing.

I hope this sparks reform, I really do.



*Well, I did, but mostly from gun-nut Americans and they are not my friends. 

3 Jun 2017

Stewart Jackson: Redux

It's election time once more! Last time, despite my pleas, Peterborough foolishly elected Stewart Jackson as MP once more by a scant 1950 votes. And, as his leaflet dropped on our doormat the other day, let's take a look at the Life and Lies of Stewart Jackson.

So, the front page. Stewart Jackson stands with Theresa May, as you'd expect really, considering he's a Tory. He's hardly going to claim he hates the bitch and would make a much better PM. There's also a photo of him beaming in front of Peterborough guildhall and supporting a bee protection charity. That's ironic since he's consistently voted against climate change protection measures.

Within the leaflet, he marks out the work he's done for the area, like blocking the solar energy farm that was going to be built on Newborough fen; raising a petition about Werrington freight line  - he doesn't mention it submitted before GE2015, went unanswered, and the plans went to the secretary of state three months ago - and trying to improve the A47, which is underway, notably with the FUCKING AWFUL traffic lights at Wansford A1 junction. Such a trooper. In fairness to Stewart Jackson, he does write to the cabinet with questions pertaining to Peterborough (most of which already have answers available in the public domain), and voted in around 85% of all votes. He pushed for Brexit, which is no surprise, and he's even curbed his expenses a little. He's very proud of Peterborough's low unemployment rates. He also claims that the NHS is his top local priority, which is an absolute joke considering his voting history.

His voting record remains a catalogue of misery for anyone who isn't an older, healthy, white, heterosexual, salaried, homeowning British citizen.
He has consistently voted against gay rights, race laws, benefits being raised in line with inflation, and increasing jobs for young people. He has voted for the bedroom tax, for restricting disability benefit, for restricting disability benefit to those who have been disabled from birth/youth. He has voted against limiting letting fees for tenants. He has voted against people with cancer receiving extended ESA, He voted for the tuition fees raise, for the academy system, and for the various bills undermining the NHS. He has voted against ID cards, but for mass data retention (the Snooper's charter). He voted against a right to remain for EU citizens. He has voted against special provision for military families in the welfare system. He has voted against slowing the rise of rail fares. He has voted against nationalisation of public transport.
Of course he has, he's a Tory.


The rest of the leaflet is given over to the words of The Great Leader Theresa May. Theresa swears she has set out a clear approach to Brexit, which...has she? Really? She says she has a strong negotiating hand. The Tories have been openly mocked by the rest of the EU and Theresa May has demonstrated that she couldn't successfully negotiate a child's bedtime. We have nothing to negotiate with, except tax haven status,
And then, in a rehash of the last election, we are told our election choice is Strong and Stable Leadership in the National Interest OR A COALITION OF CHAOS with Jeremy Corbyn and Tim Farron. DO YOU MEAN TO TELL ME, CONSERVATIVES, THAT A COALITION GOVERNMENT WITH THE LIB DEMS IS A BAD IDEA???

The leaflet then tells us that Trump winning was a shock, even though Theresa May fell over herself to rush over there and hold his grubby, orange mitt. Brexit was a shock, even though the Tories definitely wanted it and it's gonna be amazing, honest guv. And Corbyn winning two leadership elections was a shock.

Maybe Britain is fed up of your lying bullshit about caring, Theresa. Maybe hardworking British families, who are also apparently irresponsible benefit scroungers, have had enough of your shit, of your punishing the economically weak for the faults of the strong, of being told if they would JUST WORK HARDER, they too could be RICH. Maybe normal British people fancy someone with a bit of integrity, someone who is decent, who inspires faith in the politically inactive. Someone who hasn't promised on national TV to NUKE THE WORLD, you fucking bloodthirsty maniac. Maybe the national debt going from five hundred billion pounds under Gordon Brown to a staggering ONE THOUSAND SEVEN HUNDRED AND THIRTY BILLION POUNDS in just SEVEN YEARS of Conservative government doesn't inspire a lot of confidence about your FUCKING ECONOMIC NOUS, which has always been the Tory selling point.

People are dying under this government, unnecessarily. The NHS is being stealthily dismantled, as is the social care contract. We go headlong into Brexit, fronted by a vindictive racist who couldn't lead herself out of a paper bag; who thinks you will vote Tory because you think they're a safe pair of hands. They aren't.


All voting information from They Work For You. Economic information from UK Public Spending. Leaflet published by Matthew Dalton on behalf of Stewart Jackson. Vitriol my own. 

10 May 2017

Privilege

The thing that pisses me off most about Tories (and there are a lot of things that piss me off about the Conservative party, but I'm talking about Tory voters) is their fast belief that anyone, ANYONE, who works hard enough can succeed, and a lack of success is an individual's fault. In summary, poor people are poor because they have failed as a person, on some level. Rich people are rich because they are inherently better.

I mean, it's bollocks. You don't need a sociology degree to know it's bollocks, AND YET it forms the background of so many Tory policies. There is an a total lack of insight into how society works. When we are born, we are effectively a blank slate. What we are born into affects every aspect of our development and future.

If your parents are better off, they might be able to pay for your driving lessons, buy your first (and subsequent) car, pay your student living fees, house you while you save for a mortgage, lend or gift you money for your mortgage. And all these things are taken for granted by you, the privileged one, as enjoying the rights afforded to you by birth.

On the other hand, if your parents have little spare money, you might not learn to drive, or go to uni. This might severely restrict your ability to get a job, particularly in deprived areas. Your parents might be keen for you to move out because they can't afford to house you anymore. You might end up paying a rent that takes up most of your income, leaving you no spare cash to save for a mortgage. And this, according to the Conservative party, is your fault. You should have tried harder.

Even things like having parents available for free childcare can massively affect your career trajectory and income potential. And these are not conditions that most individuals choose, they are accidents of birth.

It was different when my parents were young, and you could get a 100% mortgage by just asking, and business loans were a thing, and university was free, and jobs didn't require you to have a degree and three years experience just to work in retail. It was different when their parents were young, in the immediate postwar era when the welfare state was born. But in the current economic climate, it is bloody difficult to get going into adulthood without some financial backing.
And so you get a cycle of poverty. Poor parents have poor children who become poor parents who have poor children. The Tories are trying to stop this by stopping the poor reproducing (and just for the record, THIS GOVERNMENT THINKS YOU ARE POOR IF YOU EARN LESS THAN £35k P.A SO WIPE THAT SMUG SMILE OFF YOUR FACE) but ultimately, you have to invest in people to make them thrive. You would think the Tories would know this - they know you have to invest in a business to make it succeed. But no.

But when Jeremy Corbyn starts talking about investing in normal people, in redirecting wealth, the Tories throw up their arms in despair, crying Marxism and trying to re-institute fox hunting. Fox hunting - a sport that occupies a few hundred people at a time, each paying a massive subscription, exclusive by definition - is far more important than dealing with any form of social inequality, because the Tories simply fail to acknowledge that it exists.

29 Apr 2017

"We Didn't Have Autism In My Day"

If you browse articles on autism, or follow any social media discussion on it, someone will show up and tell you that autism is new. This someone will usually be a 50+ bloke, who thinks it's all a load of old codswallop; poor parenting, too many chemicals in foods, vaccinations, labelling every kid who's a bit odd. Autism is new. Autism is a new invention that doesn't really exist, except in the Rain Man savant stereotype.

Autism isn't new. Autistic behaviours have been described in individuals going back at least 500 years. Just as epileptics were considered possessed by the devil, autistic people were considered soulless demons. Until relatively recently, disability was widely categorised as deaf, blind, crippled or imbecile/insane/feeble minded. Autistic people were broadly defined as mentally subnormal, where it obviously disabled them, and weird or criminally insane where it was less disabling. It was formally discovered and named almost simultaneously by Hans Asperger and Leo Kanner separately in 1938 (hence the confusion between Aspergers syndrome and Autism - they are the same disorder, described slightly differently by two people on different continents at the same time). Autism was initially thought to be the result of distant parenting, and was classified as "infant schizophrenia" until the 1980s. This idea of autism being the fault of parents, or a psychiatric disorder, still resonates in public discourse. But autism is not a psychiatric disorder, although it is usually grouped as a mental health condition - it is a pervasive developmental delay, pervasive because the person cannot 'grow out' of it. One significant change in the last twenty years has been a fine-tuning of diagnostic methods, which has enabled more subtle cases to be differentiated, diagnosed and helped. I know several adults who have discovered, sometimes to their great dismay, that they score highly on autistic diagnostic tests - the stereotype of the mute, asocial autistic person is not really accurate now. 

I read a comment from a man on twitter who said that there was nobody autistic at his school, and he was 37. I am five years younger than him and I went to a large primary school, and a large secondary school. There was at least four autistic people in my primary school yeargroup and many more in secondary school. Once you have an autistic person in your life, you begin to recognise the signs in others, but when you don't know the signs, you just think they're weird. The autistic people in this man's school would be the ones who were bullied, the ones nobody hung around with because they were strange or said the wrong things, the ones who never went to birthday parties, the ones who were regularly out of class, the ones who turned up for two terms and then disappeared. Jimmy's classmates know and broadly accept that he's different, but they don't necessarily know he's autistic - autism isn't a common word in an 8 year old's vocabulary. Autistic children are supported more obviously in mainstream schooling now, and there is far more help available if you qualify for it. 

But formerly, the only real option for autistic children was residential institutions. 

For those of us born in the last forty-ish years, institutions are a distant spectre. Huge Victorian asylums still stand in most towns, often converted into flats or hospitals, the residents broadly unaware of their history. But for our ancestors, institutions were a normal, if feared, part of life. If you had an obviously disabled child, you were encouraged to send it to an asylum as quickly as possible. Autism isn't usually apparent until toddlerhood at the earliest, but children were still sent away to residential hospitals. Parents were not encouraged to visit - a relative of mine was put into an asylum in early childhood because she had Downs syndrome, and lived forty miles from her parents. Her mother visited once a week until her death aged 13, in 1952. This is recent history. In the 1980s, the people who had lived in institutions for most of their lives began to be released as part of the Care in the Community Act. Many ended up in sheltered housing, having never been taught the skills to live independently. The issue with living in an institution is that you become institutionalised. Ironically, this rather suits autistic people, although it has the potential for horrific abuse. 
If Jimmy, my beloved eldest boy, had been born in 1949 instead of 2009, he would have been institutionalised by now. He would be living on the site of the old District hospital, in the vast Victorian workhouse and asylum complex that has been completely redeveloped. He would be considered dangerous and insane. 

Autism is not a new disease, and the reason older people claim they didn't have it in their day is because it was hidden away, concealed behind huge walls and gates, in stigmatic buildings, buried under sedation and restraint. There should be no pride in claiming autism wasn't around in the good old days - it shows how invisible and suppressed disability was, and how uncomfortable it makes some people that it's now 'mainstream'. 

28 Apr 2017

Tax Credits

So, I signed the petition to repeal the 'rape clause' that forms part of the tax credit policy now. And today, I received a government response which amounted to "you should have complained about this eighteen months ago, tough shit". But one paragraph absolutely INCENSED me:


LET US PARSE THIS STATEMENT

"Families supporting themselves solely through work" are either not claiming the tax credits they are entitled to, or earning more than the income threshold (£25000 for one child, £35000 for two). Look at those thresholds: they are Quite High particularly as the average annual income is £27000. The vast majority of working class families qualify for tax credits. Remember the 'hardworking families" trope? That's them.

"do not see their incomes rise automatically when they have more children". No, but by earning more than the income thresholds for tax credits, they already have a considerable scope for a much higher income. Two children on £35000 a year is very different to two children on £45000 a year. There are always people who fall into the cracks of being just over the threshold, but frankly if you struggle on £36k p.a. with two children (as one who has been doing so on much less for years) learn to budget better. A great deal of necessary public sector jobs have low and locked in salaries - an MAU staff nurse in Peterborough can expect a starting salary of between £22 and £24k; a newly qualified teacher's income is capped at £22k in their first year - which automatically classifies them as both poor and according to this government, an idiot with no idea how to control their fertility unless you threaten them financially.

"The policy encourages families who receive benefits or tax credits to make the same financial decisions about the number of children they can afford to support as those families who support themselves solely through work"

WHERE TO FUCKING BEGIN? The fucking PATRONISING language - "we ENCOURAGE the IDIOT POOR PEOPLE to STOP BREEDING". The whole idea that Only Rich People are sensible enough and rich enough to have more than two children. The idea that people have children for tax credits - yes, the difficult pregnancy, birth and eternity of care I invested in my third child is definitely worth the £50 extra a week. And separating those who claim tax credits - 4.43 million households out of approximately 18 million in the UK at the last ONS count - from those who don't need to as though that is a fair and just way of dividing the nation's fertility choice. Previously, those who were on income support or JSA were the Undeserving Poor of the nation. Now, apparently, it's to be extended to anyone on a low income regardless of how much they work or what classification of job they have.

"while protecting the vulnerable by retaining extra support for families with disabled children." DON'T MAKE ME FUCKING LAUGH. I have a disabled child, and believe me, I had to TAKE THE DEPARTMENT OF WORK AND PENSIONS TO COURT AND THEN THREATEN TO DO IT AGAIN to get them to pay the money rightfully owed to my disabled child. They don't give a single solitary fuck about disabled children.

None of this stops me or anyone else from having thirty two children if I want to, but the fact is that most low income households have included tax credits as part of their forecast income when deciding to have more children, and now they will have to stop doing that. There is an uncomfortable element of eugenics inherent in this policy that reminds me of the Victorian era when it was widely believed that poverty and poor moral behaviour were genetically linked. Stop the poor people having loads of kids and maybe there won't be any more poor people to worry about! Never mind fixing the causes of poverty and social inequality, just financially sterilise them!

But for a whole host of women, this family cap is going to be a real fucking issue. You see, it is applied to children born after 7th April 2017 and to "any new claims". So, if your circumstances change in the near future, and you suddenly find yourself applying for tax credits for the first time, little Imogen the Third Child won't be counted. If your partner moves in, or out, that counts as a new claim, so you may be absolutely fine now as a single parent of four, but if your boyfriend moves in, you will suddenly find two of your children are apparently not eating all your food, requiring clothes, using energy etc.

My situation six years ago was nothing uncommon - boy meets girl, boy marries girl, boy impregnates girl, boy fucks off without a backward glance. I only had two children when I was dumped, but had it been another two years down the line, it could have been three. We could have easily afforded three children - indeed, we both now have three children - but I cannot stress enough how terrifying it was to suddenly lose 4/5s of my household income. My monthly wage didn't cover the mortgage, nevermind anything else. I relied on tax credits. Nobody should have children they cannot afford, but having children when you can afford them does not act as insurance against any financial or personal misfortune in the future. Women with more than two children in abusive relationships will have to think long and hard over whether they can afford to leave their partner.The Tories have also cut bereavement benefits, so if your husband or wife dies leaving you with more than two children, you are doubly fucked.

It will be women who suffer the most through this tax credit amendment. Two million lone parent households exist in the UK - that's just under half of all tax credit claims - and 91% of them are headed by women. Not only do women suffer the brunt of single parenting, they also have this fucking rape clause bullshit to overcome, where their third child only gets benefit if they are a product of rape. Never mind marital rape, never mind the ethics of being obliged to report your rape just to secure a little extra money, what sort of fucking government decides the only reason a poor woman might have more than two children is because she was raped?

It is a toxic, classist, eugenic and misogynist amendment and I loathe it and the party that instituted it with all my heart and soul.

24 Apr 2017

Bread and Wine

Communion smells of red wine. Of the resurrection and the life to come.
Communion smells of red wine. Communion smells of Mum.

Six days before Mum died, some of us gathered at her bedside and the vicar came and did Communion. I didn't know they did that, but they do. She brought the wine and wafers in an ornate box, and we sat on an odd assortment of pews and we prayed together. Mum, by that point, was quite beyond conversation. She was confused, she had terrible shakes, she was in pain. We did not know if there was much point in Communion, except that Mum wanted it. Before her illness got so severe, God became more important to Mum than ever. Many would lose their faith in the face of suffering. Mum's got stronger. She did not fear death because she had great faith in what was to come, and the suffering was part of that. She believed in the cleansing power of pain. Mum saw nothing unnatural in dying, nothing unusual in it. She did not pity herself. She enthroned herself in life.

I digress. We sat by Mum, and we had Communion, a short form. And Mum, unable to swallow, swallowed the bread, the wine. And she knew all the words, she mouthed them along with the vicar as she shook and spasmed and faded away. The words she'd spoken every single Sunday as a child, and as many Sundays as she could as an adult were deeply embedded in her consciousness, away from the pain and the toxicity. She knew.

The vicar made arrangements to return the following week, but was about twelve hours too late.

I could not bear to go to Communion again. I could not bear to break the last covenant made with my mother.  I could not bear to speak the words, to go to the altar and taste the bread, the red wine. I could not bear to sit there alone, without her. I could not bear the pain.

But Easter came round and I knew exactly what Mum would say to that. She would call me a bloody heathen and harumph and judge as she busied herself with cooking. Not going to church on Easter Sunday may not get you excommunicated anymore, but as far as she was concerned, it bloody well should do.

So I went. And the claims of eternal life and resurrection felt hollow. Death has not lost its sting. Heaven feels far away.
And an old woman was ill during the sermon. I took her pulse. It felt wrong. I told her husband to call a doctor. I sent her home. I had no authority to do any of those things. I just did. Someone had to. I don't know if she died. That would be a bitter irony.
And then it was time for Communion and I went to the altar, and I tasted the wafer. It stuck in my throat, dry and fresh for Easter. I sipped the red wine. It tasted of Mum, and life, and death, and alcohol first thing in the morning.

And I broke that small link between me and Mum and I cried.

Because grief does not stop with the funeral. Grief does not stop with the seasons. Grief does not know how many days, weeks, months it's been. Grief is a tidal wave, every single thing resonant with meaning. Grief is frightening. People who are not grieving fear it, they shy away from it because they don't know what to say. They don't know what will help. They have not learned that nothing helps except time, but time itself feels like aeons of pain. I am afraid of a life without my mum. It has been almost six months and I am still so afraid, afraid to live and to keep going. I have so much to tell her and she cannot reply. I am scared I will falter without her guidance. I am scared I will fuck up.

I work. I look after my kids. I study. I try and see my friends. I try and be normal. But I am marking time until I feel normal again, knowing it might never happen.

Taking Communion was one tiny step, with huge symbolic meaning. There are many more steps to take.

18 Apr 2017

WHAT? AGAIN?

So, there's to be a general election in less than two months. This is...unusual, but perhaps not unexpected.

The last general election was almost two years ago, and one of the myriad electoral promises made was that there would be a referendum on EU membership if the Conservatives won. This was a promise made partly to appeal to some Tory (and other party) MPs who were threatening to defect to UKIP, and to appeal more generally to UKIP voters. Despite a lot of hand-wringing about the possibility of a hung parliament and another coalition government, David Cameron won, Nick Clegg was told to sling his hook, and the possibility of a referendum loomed large.

David Cameron announced the EU referendum in February 2016, and it was held in May 2016. It was a dirty fucking scrum of a campaign, with the remain side not really bothering until it was too late, assuming that nobody would want to leave, and the leave side using racism, xenophobia and outright lies (often painted on the side of a bus), shrieking about democracy and sovereignty when challenged. We voted to leave, by 51.9% to 49.1%*.
Uproar. David Cameron resigned. The initial leadership of both the Conservative Party and Britain seemed to be Boris Johnson's for the taking, except he decided not to run (my theory: didn't want the shitty Brexit baton). His fellower Brexiteer Michael Gove ran, and came dead last. And so the race was left to Andrea Leadsom, who had little inter-party support and shot herself in the foot by suggesting women without children had no feelings, and we had a new PM with barely any fanfare. Theresa May. Former home secretary, supporter of the Remain campaign, first female PM since Thatcher. And Theresa May decided fuck it, she would go for a hard Brexit.

What is a hard Brexit? A soft Brexit? A buttery biscuit Brexit? Nobody seems to know, and considering that is what our country hopes to pursue in the next two years, it really is time someone came up with a fucking plan beyond "Brexit means Brexit". Instead, we have had Jeremy Corbyn enact a three line whip to make sure Labour agreed to trigger the Brexit process, the SNP announce another independence referendum for Scotland** and SHIT GOING DOWN in Northern Ireland, our only land border with the EU, which is worrying because we have a reasonably fraught relationship in general with Ireland and Irish independence. There have been eleven by-elections in sixteen months. Only the Lib Dems are offering any resistance to Brexit, so it's kind of a shame they only have nine parliamentary seats. UKIP have imploded, giving each other brain injuries and shouting about Douglas Carswell being a blood traitor, like they're fucking Dementors. It's been a trip.

Then there's the great fucking Wotsit over the sea trying to start a nuclear war with North Korea for shits and giggles.

The NHS continues to be underfunded, with staff at breaking point. Teachers are on the verge of striking again. Bereavement allowances are being slashed, because fuck knows the widowed need more hassle. Tax credits: don't even get me fucking started. Nobody can afford a house unless they're minted. Worker's rights are being gently eroded ready for the lifting of EU labour laws. It's a mess.

So, why call a general election now? Elections are expensive to run. They take a lot of administration. There's usually televised debates, which have normally been done by now. There was major election expenses fraud last time, which still hasn't been fully investigated. There's an act of parliament specifically to stop PMs calling a general election early. Why not just wait three more years and do it then, like everyone expects?

As it stands, the next general election should have been held in May 2020. The Article 50 protocol states that we should leave the EU by April 2019. Those two dates are quite close together, politically speaking. You, the voter, will remember quite clearly how fucking shit or amazing Brexit has made your life come 2020.

I expect that what Theresa May wants is a majority government without strong Brexit opposition to sail through the process, come out the other side and then bow out in 2022. I expect what Theresa May wants is for her government to stop bickering about the terms of Brexit, agree with whatever deal she can come up with, and crack on. I expect she wants to be elected by the people rather than just her party, so she can say she has been Chosen. I expect she doesn't want to have to fight an election the year after Brexit completes.

There was an awful lot of wailing immediately after the announcement that this will just make life easier for her. So don't. Vote. Vote for who you want to run your constituency. Brexit is happening unless the Lib Dems win by a landslide, so what we need is strong opposition to get us the best deal. Find out who your candidates are, and vote for the one who gives a shit: 90% of the time, it won't be a Conservative. There's a website here where you can see what your current MP votes for and against.

If you've recently turned 18 or will before June 9th, you need to register to vote. If you've recently moved house, you might need to register to vote. If you've recently graduated, you might need to register to vote. And since this election has been called with so little notice, you need to do that now: you can do it here. If you are a student, you are likely to be at home on June 9th - find out where you're registered to vote and apply for a postal vote if it's in your university constituency, and do it within the month. If you're going to be on holiday on June 9th, have a great time, but register for a postal vote first.

Young people, those aged 18-24, have the greatest stake in the future of the country, and they vote the least. So, boring as it can be, educate yourself and vote. Apathy changes nothing.



* Interestingly, this small victory has been quoted as a reason to pursue a 'hard' Brexit: when Erdogan won his own referendum by 51% to 49% in Turkey last week, this was described as "the smallest of margins" by the Torygraph no less. 

** When Brexiteers start complaining about this, I laugh and I laugh and I cry for their hypocrisy

26 Mar 2017

Mother's Day

Mothering Sunday, to give it its proper title, marks the halfway point of Lent. The halfway point of the slog through the days of denial, of sacrifice, of fasting. The day where the end draws into sight, the joys of Easter just over the hill. The day when you should visit your home parish, your mother church, and historically, for many young men and women away in domestic or farming service, your mother.
Of course, fewer people observe Lent each year and the original point of Mothering Sunday is lost in a sea of greetings cards, floral bumf, and internet offers. Just this week, the internet has suggested I should buy my mum flowers, clothes, wine, gig tickets, and cookies.
I would buy her a book. A book of social history, or food, or better still, a mix of both. A book she wouldn't have seen in her semi-regular trips to the shop, or advertised in Sainsbury's magazine. I would buy her a book I know she would love, the sort that she would take to bed, packet of crisps in one hand, book in the other. I would buy her something like the history of the playground I saw in Jarrolds on her birthday, that made my heart hurt with longing that I would never get to give it to her.
I would buy her a card and I would write how grateful I am, and how much I love her, and hope somehow that words would be enough. I would take it round, and all her cards from all her seven children would be lined up in a row on the windowsill, and she'd be nagging my dad to go and see his mother before it got any later, and tea would be prepared, and she would be content.
That is what I would do if I still had a mother.

But I don't. And I don't like today. Today hurts.

When your mother dies, you don't merely grieve for the person. The wonderful, hilarious, intelligent woman I grew up with, who was my guardian, my educator, sculptor of my life and my personality, my friend. How I grieve for her. Her phone number in my 'last called' contacts falls further and further down the list and will never come back up. Her things are still where she left them at home, but they don't move a few inches to the left or right, the way things do when they are in use. I still expect to see her when I go in my dad's garden. I call it my dad's now - it was always "mum's house". Although we have inherited the look of her, her voice and her image are now only in recordings. The smell of her lingers in her clothes, but it will never be replenished.

In a million tiny pinpricks and sledgehammers of pain, I grieve for Jo, a woman who happened to be my mum, who was hundreds of things to hundreds of people.

But I grieve for the loss of my mother, for the loss of a mother's love, for the loss of a mother's guidance. For the loss of the person who was there first, who recognised my presence before I had a brain, who felt my first fledgling movements, and who knew me best. For the loss of the stability and foundation you only have through good parenting, through good grounding. Many people are not lucky enough to experience this type of attachment, but I did. We did.

I feel at sea: lost and abandoned and young and frightened. The fear on a child's face when they lose their mother in a shop momentarily, only magnified. When I was little, I was plagued by nightmares, and I would pad up to my parents' room and try and wake my mum up to tell her. She would rarely manage to wake up - poor woman was shattered - so I would sit by her head, and snuggle in to her until I felt safe enough to go silently back to bed. And that is what I long to do, to go and snuggle up to her for a bit until I feel safe enough to go back into the world.

Five months tomorrow. I feel like it has been five years and five minutes. But what really bothers me is that this is for always. That she won't come back. I can't have her back. Maybe if I wait a really long time, and be a really good girl, maybe we will be back together. Maybe.

When Mum was dying, she said she didn't mind dying herself, but she minded terribly about how it would affect us. She knew what it would do to us. I didn't mind Mum dying too much in the end. It felt very natural for her to die. It felt very unnatural to try and prolong her life. There comes a point when it doesn't feel wrong anymore, much as when you are pregnant, there comes a point where you really want it to all be over. So many parallels between entering and leaving the world.

But this grief, this all consuming and powerful grief: that's something to mind. That's something to tear you apart. Particularly on Mother's Day.


10 Mar 2017

My Chemical Menopause

I was diagnosed with endometriosis last August, after an ultrasound scan showed that my ovary and bowel were sticking together within. That's an...unpleasant mental image, but bear with me, it gets worse. I had a diagnostic laparoscopy in November to confirm the diagnosis, and my surgeon found various patches of endometriosis around my left ovary. He BURNED THEM OFF. After two uncomfortable weeks of healing, I ovulated on the right, and all was well. The following month, I ovulated on my left side and it quickly became apparent that if anything, the surgery had made it worse. And I did DESPAIR.
I returned to see my gynae a couple of weeks after that and explained that it seemed not to have worked. I have wanted my ovaries removed since my mum died. The combination of her Unusual Pathology Ovarian Cancer and my endometriosis rendering ovulation unbearable seemed to suggest that just being shot of them would be helpful. A preventative measure, if you will. But my gynae was unconvinced that the pain I've been having was caused by endometriosis.

Let me tell you of endometriosis. A uterus is lined with endometrium. This is what nourishes an embryo until the placenta develops, so it builds up every month and should no embryo appear, out it comes as a period. Yes ladies, that is your body complaining vigorously that it BUILT THIS NURSERY AND NOW THERE'S NO DAMN BABY. With endometriosis, the endometrium has gone walkabout. It's still lining the uterus, but it also pops up in strange places. It can go anywhere, even your lungs, although generally around your pelvis, and it comes back even when it's been cut or burned away. As it swells each month and then bleeds, it can get in the way of fertility, cause immense pain and bizarre periods. It's like a harmless cancer that nobody quite fathoms. Until you get it, and every ovulation has you screaming in agony, vomiting and crapping yourself for a week. I told you it gets worse. I would rather have ten massive babies than ovulate.

And so, my gynae had a plan. A plan to prove whether my pain was caused by endometriosis or...gulp...birth injury. To my bowel. Eeeesh. And to prove this, he would give me the gift of menopause.
I was...a bit surprised. A bit terrified. A lot terrified, actually. You see, to give a woman of 31 the menopause requires injections. Four-weekly, implanted and irreversible injections. No deciding eight days in to say fuck it, this is shit, and stop.  The injections are a drug called goserelin, more commonly known as Zoladex, which is usually used to help treat prostate cancer in men and breast cancer in women. Zoladex flattens your oestrogen and testosterone production by overstimulating production, so your brain thinks it doesn't need to make those hormones anymore. Your ovaries stop. You are menopausal. Woop.
Now, the nice thing about Zoladex is that it does wear off, so I wasn't facing menopause forever, just for six months to see if it fixed my abdo pain. And if it did, then hurrah. If not, on to more clinics and tests. So, I decided to give it a go.

This is my diary of The First Month of Going Through The Menopause Really Really Quickly, Long Before Biology Dictated I Should: 

Two Weeks Before
I don't know why I'm so scared. I'm getting exactly what I wanted - no ovarian use and HRT - but in a nice reversible way, so if it doesn't work, I've still got my innards and haven't had to have more surgery. But...the menopause. That's a scary thing, right? I'm going to turn into a flame-breathing, sexless dragon. My boobs will shrink and I'll get fat(ter) and I'll break all my bones. I'm not bothered about hot flushes, because it's FUCKING FREEZING, so it'll be nice to be warm. But I am worried about being a flame-breathing sexless dragon. I have already told the children I might be a bit cross for a few months. And poor Alex has no idea his booby is about to vanish - another side effect of being an old woman, biologically speaking. Also, I am slightly irritated to learn that I could still get pregnant despite having dead ovaries. I suppose having no sex drive ever again will be an adequate contraception *wails into wine bucket*

A Week Before
I wish I could talk to Mum about this. Mum would have loathed the very idea of it. She would have shrieked about how she'd suffered all her life, and hormones could give you cancer (the irony!), and you shouldn't mess around with these things. That was Mum's philosophy on reproduction - let it sort itself out. Part of the reason her cancer wasn't diagnosed for so long was because she ignored her ovarian symptoms as 'normal'. That's part of the reason I want to try this out. I don't want to ignore the symptoms of (potential) cancer. I don't want to live half the rest of my fertile life in pain, and the other half waiting for pain. It's just not right.

Still A Week Before
I saw a lovely GP today, who told me that I only really have to use Zoladex for a few months and if it doesn't help the pain, I can stop. That's a relief. She prescribed everything for me, including tasty HRT and now it's just a matter of waiting for the appointment. I am nervous. I have booked it to go in on Valentine's Day because nothing says I love you like being neutered.

The Day Before
Last night, I dreamt my mum told me that getting Zoladex would tear my life apart and I was being a twat getting it. So, thanks, subconscious ghost of Mum. I'm so anxious. But resigned. I'm dreading speed-weaning Alex, but he's infinitely less bothered about breastfeeding than his brothers were. I will miss feeding him. I've been pregnant, breastfeeding, or trying to get pregnant for eight and a half years, and I will miss that part of my identity. I knew this day would come, of course, but not as a side effect of medication.

The Day Itself
I had it put in this morning. It's not a bothersome procedure. I was anticipating an ENORMOUS needle, but it's really not - just a scratch, then a slight pressure. It's in my stomach, just under my navel in my nice soft STRETCHMARKS. The implant is the size of a grain of rice, and it dissolves over time, so no need for painful removal. The nurse assured me I wouldn't start feeling anything for a while. She was wrong. Two and a half hours later, and the pain I associate most with the endometriosis set in, gnawing and clawing down my back and hip. It's now been four hours and I feel hot, dry-mouthed, sickly and like I'm about to have a massive period. Lord knows what tomorrow will bring.

Two Days On
Still got awful pain. It better bloody piss off soon. Otherwise, I've settled down a bit - hot flushes and headaches seem to alternate, but don't last long. I've still got the driest of mouths. I have no libido. Not even a little bit. I was expecting HAEMORRHAGIC FLOODING but I haven't bled either. I feel rather calm, really. I thought I would be furious. My breastmilk is more or less gone, much to Alex's sobbing distress last night, but he slept great last night regardless. Actually, so did I. I haven't slept well since I was pregnant with him, over two years ago now, and the last two nights I have slept like the Actual Dead. Who knew sleep could be influenced by oestrogen?

One Week Later
I have survived the first week. It's not helped my pain. I mean, the cyclical element has gone - my period would normally be due around now and I've had nothing related to that, but the general post-coital and random bursts of crippling pain are still there. I've had no bleeding at all, which I wasn't expecting. I haven't started HRT yet, because I'm a bit scared of the potential side effects, but I think I will soon. See, I feel alright, but I also feel entirely dead inside, and I feel like this is a bit...much to be honest. Chemical castration is all very well until it makes you feel like you're in a weird emotional void. And my skin is FUCKING AWFUL, so there's that. Hot flushes are intermittent and a bit like the build up to a fainting fit, which is EXCITING. I've had a lot of headaches though. I've decided to have two months of treatment total and, if there's no effect on the pain after that, then fuck it.

Eleven Days In
I started HRT yesterday in an effort to beat the migrainous headaches. It worked. It has also made me bleed. I grow weary of side effects. I know it's to be expected when you fuck with your reproductive system (as, my mother shakes her head from heaven) but I can't drink alcohol because I'll lose bone density, I still have to use contraception, and I'm still experiencing the same pain I went on the medication to try and fix. So. Yeah. And I'm spottier than I have ever been in my LIFE. I look LEPROUS.

Twenty Four Days Later
Right, so, the verdict after (almost) month one?
Obviously, it took a while to settle in. I started HRT, promptly BLED LIKE CARRIE AT PROM, and then felt awful because of the sudden anaemia. And then...normality. I feel...normal. I feel fucking GREAT. No pain, no nausea, no diarrhoea, no problems after eating dairy, no spots, no hot flushes. My mood is fine, I no longer feel dead inside. I feel a bit more aggressive, and I get cross occasionally, but I always HAVE been FURIOUS, so that's fine. The only real issue is headaches, but they're not too bad or too often. Also, dry skin, but that's nothing I can't manage. I cannot tell you the difference no pain has had on my life. I actually get stuff done. I don't spend four hours trying to wake up because I have such severe abdo and back pain. I haven't shit myself in weeks. I am going to continue treatment and hopefully it will continue to be alright. I still have minor symptoms. It still hurts after sex, but not in the prolonged and disabling way it did. This means I may have some birth injury as well as endometriosis. But taking my cycle away has been amazing thus far.

Of course, I can't stay on zoladex forever. Even in cancer patients, it's not licensed for long term use. I can stay on it for six months, which chimes in nicely with my next gynae appointment. HRT also has risks, namely of breast cancer and uterine cancer - the one I'm on is more typically used for women who have already had a hysterectomy. It would be ironic indeed if the medication I'm taking to stop my ovaries wrecking my life killed me with uterine cancer.
If it continues to work, the logical next step is an oopherectomy - having my ovaries out - which is usually done with a hysterectomy. And that scares the crap out of me, however little I want my reproductive organs. But that's a bridge to cross when I come to it.

It is Endometriosis Awareness Week. 10% of British women have endometriosis, and many of them will be fobbed off by their GP, told it's just 'women's problems', told that since they're not permanently anaemic, it's not a problem. Many of them will suffer unexplained infertility, and if they're among the group of women who have severe endometriosis with little pain, may not consider their own uterine tissue is choking their fallopian tubes. Some won't realise that their digestive and urinary issues might be caused by their uterus, particularly if they haven't had kids yet. My own GP only referred me to gynae because I insisted on it, otherwise I would still be struggling with two weeks of severe pain out of every four. It takes seven years, on average, to get diagnosed. I was incredibly lucky to be diagnosed within six months of first going to the GP, although I have been living with steadily worsening periods and pain since I was 15. I thought it was just normal. It's not, and you don't have to put up with it.


22 Feb 2017

Rape and Sweden

Oh Farage, leading trumpet of disinformation, has told the nation via LBC that Sweden has the highest rate of rape cases in Europe. He's said this because President Idiot told the world that Sweden had suffered a terrorist atrocity...and it hadn't. There hasn't been a terrorist attack in Sweden since 2010, unless you count the attack on school children by young, white, male Nazi in 2015. But OBVIOUSLY, that doesn't count. THAT was the work of a lone gunman...

Sweden takes in a staggering amount of refugees, because Sweden's social model is based on fairness and generosity. And, Nazi terrorist attacks and other hate crimes aside, it works out fairly well. And that RANKLES. You see, it suits the right to have a common enemy and that common enemy at the moment is refugees. From David Cameron calling them 'swarms', to Teresa May stopping unaccompanied children coming here, to Donald Trump closing his borders to some Islamic countries apparently chosen by sticking a pin in a map of Africa and the Middle East. The rise of the right across Europe is a chilling reminder that all this has happened before, and can easily happen again. But that's not why I'm RANTING AWAY TODAY.

So, Sweden hasn't had a terrorist attack. Trump looks like even more of an addled idiot. How then to make Sweden look bad? Especially as it's one of the few genuinely left-wing countries in the world? I can picture the scene, Farage on the Trump Hotline promising he will sort it out on his widely watched TV show, shown every night on the single British channel. And that very night, on LBC with its listenership of 1.7% of the market share, Farage hold forth. THEY'RE ALL RAPISTS. THAT'S THE PROBLEM.

Now, in a sane world, Farage would be ignored and us lefties would have less ulcers. But for some reason, the media hangs on to his every word, waiting to either praise him or deride him. Like a little Enoch Powell, but without the Parlimentary seat or gravitas, his words have been repeated all over Twitter, to the disgust of Sweden. He cites this graph as proof:
So, it tells us that Sweden has a very high rape record rate, or at least it did in 2012. Remember that date, it becomes important in a minute. Now, the important question is "what does Sweden count as rape?"
The definition of rape is never simple - in UK law, for example, it has to be penetration with a penis or it's *just* sexual assault. They have just about got around to agreeing that unconscious people cannot consent. In contrast, this is the Swedish definition:

A person who by assault or other violence or by threat of a criminal act forces another person to have sexual intercourse or to undertake or endure another sexual act that, in view of the seriousness of the violation, is comparable to sexual intercourse [...] This also applies if a person engages with another person in sexual intercourse or in a sexual act which under the first paragraph is comparable to sexual intercourse by improperly exploiting that the person, due to unconsciousness, sleep, serious fear, intoxication or other drug influence, illness, physical injury or mental disturbance, or otherwise in view of the circumstances, is in a particularly vulnerable situation

This is a far broader definition than most countries. In Jamaica, where the second most rapes are reported, rape law broadly corresponds to the British tradition, but they don't recognise male-on-male rape because all sodomy is illegal. So, how come Sweden has such a high rape rate?
In Britain, between 5% and 25% of all rapes are actually reported. The rest are concealed, out of fear, out of shame, out of conviction that you will not be believed. Unless you are raped at knifepoint by a stranger on CCTV, there will always be an element of his word against yours, and your past sexual activity will be used against you. It is not easy to report a rape, whether you are male or female. It is not easy to be examined immediately after such a physical trauma. It is not easy to give a statement, to go to court, to defend your honour as well as your word, when you have done nothing wrong. About 85000 women are raped each year in Britain, and about 12000 men, out of a population of 64 million. The majority are not reported. Of those that are, the conviction rate is around 5.7%. About 2500 men were convicted of rape in 2014 in Britain.
Let us compare to Sweden. About 6700 rapes (in a population of 9.5 million) were reported in 2014, with around 190 convictions. But it's not the broad definition that makes Sweden appear more rapey - it's the culture. The culture of equality, the culture of believing victims and the culture of victims believing they will be helped. This is what is lacking in British policing culture - for all the claims that the raped will be believed, the trial of Ched Evans, to name just one, has demonstrated quite the fucking opposite.


But this isn't really about the rape statistics at all, let's be honest. It is the barefaced bloody cheek of Nigel Farage and Donald "pussy grabber" Trump pretending they give one solitary fuck about raped men and women. That graph is from 2012, before Syrian refugees had begun to come to Europe in anything like the number they do now. If Sweden has a rape 'problem', it long predates the refugee crisis. Rape is a serious crime, that tears the heart of its victims for years. It's a crime of power, used by men to subjugate and humiliate, to make sure their victims know that all they are for is sexual gratification. It's a crime committed by all races, by all faiths. It is not a refugee problem now any more than it was a Jewish problem in the 1930s. The threat of rape by invading forces as propaganda is hardly a new one:

           
Polish propaganda warning about the Russian army, and Italian propaganda warning about the French. Notice how the soldiers are both black, despite coming from predominantly white countries? The first one warns you to defend your women and girls, the second about your mother, your wife, your sister, your daughter. Coz fuck knows, men don't care about rape unless it's happening to someone they love. 

Rape has long been weaponised. It has long been used as an incentive to fight. But we are not at war, whatever Farage and Trump think. At least, not yet.

16 Feb 2017

Peppa Pig: A Dystopian Horror

It is Monday morning, and Daddy Pig has gone to visit Dr Brown Bear for his check up.
"Ah!" says Dr Brown Bear "Daddy Pig! How have you been?"
"Well" replies the overweight, voluble swine "I keep having headaches Dr Brown Bear and strange flashes"
"Flashes? What kind of flashes?"
"Oh ha ha ha ha" says Daddy Pig "Flashes where I think I'm not a pig" Ha ha ha ha"
Dr Brown Bear opens a drawer. He takes the pre-prepared syringe. He turns, slaps Daddy Pig on the shoulder and slips the needle into his porky shoulder. "Sounds like you're working too hard"
Daddy Pig's eyes go blank, his mirthful face empty for a moment. "Yes. Too hard. Goodbye" He walks out, mechanically.

Madame Gazelle also visit Dr Brown Bear. Her purpose is somewhat different. She is hoarse, angry, agitated.
"Madame Gazelle! What ever is the matter?"
"The children, Dr Brown Bear, their incessant chattering! The Bing Bong Song! I smell their blood pulsing through them and I yearn for a taste. One taste, Dr Brown Bear, one taste. Freddy Fox, he would never know, he wouldn't know".
Dr Brown Bear nods. They have been here before. He goes to the fridge and passes her a bag of blood. She drinks it in one gulp. The shakes subside, her voice becomes normal.
"Thank you, Dr Brown Bear"
He smiles and waves her out. She will be back in a month.

Miss Rabbit remembers. She doesn't tell the others, but she remembers. She was a career woman, the opposite of her sister, the fecund Mrs Rabbit. She could do anything and she did and that memory is what drives her through this charade. She was a person once. Her name was Rosa. She was going to marry Bert...Mr Bull...but they changed. They went to sleep people and they woke up animals.

Dr Hamster has been known to help Dr Brown Bear with keeping the others subdued in this bizarre experiment. She was a vet before and she's a vet now, and nobody notices the paradox of a pig owning a fish, a bird. She is paid well for her compliance, by whoever They are. She never sees them. She knows they are there, watching, thousands of them glued to their screens seeing what happens when different species share a common language and habitat. The experiment only really succeeds because of her, and Dr Brown Bear and sometimes the guilt drives her mad. And when it does, she goes to the mountain beauty spot, and she stares out and makes her peace. It is better in here than out there. It is safe.



9 Feb 2017

Another Epic Sandwich

When you have small children, you go one of two ways. The way of virtue - batch cooking everything organically and lovingly from scratch, pulling it from the freezer at the drop of a hat, remembering the use of a slow cooker, always being prepared. Alternatively, there is the the way of fuck this shit - cooking the same six meals on rotation all month because fuck this shit. This is slightly complicated when you have an autistic child who will literally vomit if you try and make them eat something new that they distrust. So we eat pie, and we eat pasta with sauce, and we eat a roast and then a curry made of leftovers, and we eat pulled pork, and we eat egg and chips, and we eat pizza and mini-kievs. And there's nothing WRONG with any of this, but my god it gets DULL.

So here is my treat tea, which I make only for me, and only rarely coz it's FAT, but it breaks up the monotony and the kids have had their egg and chips, and Tom is cooking pasta and I am replete.It's a sandwich type meal, because there's nothing better for a one-person feast. It's just a sandwich! Who can begrudge a sandwich?

Soph's Delicious Fucking Sandwich

You will need:
Two fresh eggs. You can tell how fresh an egg is by reading the use by date and subtracting 21 days. This will give you the day it was packaged. Much easier than fucking about with glasses of water.
Two bread rolls. Not ciabatta, something a bit more sturdy. A standard burger bun will do.
Some smoked salmon. Cheap offcuts are fine.
Salad.
Hollandaise sauce. Don't make it yourself, but do buy Maille brand because it tastes nice.
Ketchup, if you're a pleb. I am a pleb.

Slice your buns in half. Layer some salad and salmon on the lower half of each.

Now, poach your eggs. I have never had the slightest bit of difficulty poaching eggs, but some people treat it like it's neurosurgery. Make sure your eggs are reasonably fresh. Break them into water that's fucking hot but not quite boiling. Don't touch or stir them. Don't let the water boil. They will set into a little cloud. Skim off the white crap that comes sprouting up - I have a skimmer that I use solely for this, although I'm sure it has some mysterious purpose in stock making. You can use a spoon if you lack a skimmer. Poached eggs don't take long, but will sit for ages in warmish water. I can't tell you when your eggs will be sufficiently poached - for that you must use your eyes. If this is really too difficult, separate your eggs and poach the yolk only. It's much easier to see when the yolk is set. If EVEN THIS is too much, fry the fucking things.

Drain your poached eggs on kitchen paper. This stops everything getting soggy because poached eggs are a bugger for hiding water in their fat, white folds.

Heat your hollandaise. You want a fat spoonful per bun. Maybe two. Don't let it boil, it just wants warming up.

Put a drained egg on each salad-and-salmon bun. Put the warmed hollandaise on top of the egg. Put the top of the bun on top of all this.

Serve with some salad on the side, because the yolk bursts and goes everywhere and you don't want to waste it. And some ketchup, if you're plebby. Eat it. Revel in it. You will need to wash your face and hands afterwards, so you probably don't want an audience.
***

I would show you a picture, but I ate it too quick.

23 Jan 2017

Moisturiser

Content Warning: Death. Medical details. Cancer. Woe.


Your guts live inside a sort of bag in your abdomen. This bag is called the omentum, and the idea is to keep everything snug and safe, and together. If anything should rupture within your abdomen, through cancer, or infection, or ulceration, this bag has to be opened up, emptied and cleaned if you are to have any chance of survival. When Mum's bowel burst, that's what they did to save her. As you can imagine, sometimes you miss a bit, and this also happened to Mum. This tiny missed bit grew into an abscess right on her liver. The cancer had so convoluted Mum's insides that attempting to operate again would have been enormously complicated and probably hastened her end, thus being a massive waste of money and quality of life. So, instead, they decided to stick a drain in it.
They stuck it in one lunchtime. You cannot imagine the smell, the miasma it created. Just the tiniest drop of pus would stink out a whole sheet. It really upset Mum. She was a very clean person, obsessed with food hygiene and the fact that molecules that could be smelled could be inhaled. The intention was to remove the tube, but this was impossible because first the infection kept filling back up, and second it was in a tumour. So, the tube stayed in and she had a 600ml capacity bag strapped to her leg. When it first went on, it fit perfectly. By the time she died, it flapped around and didn't fit to her leg at all. It was a very visual reminder of how much weight she had lost and how quickly.
She was terribly distressed about the smell, and the next morning, I was wracking my brains about what I could do for her to make her feel less violated. I found some travel Molton Brown bath gels and I took them into hospital, and bought some flannels. She couldn't have a bath or a shower with the drain in, so she chose the one she liked best and I put it on a flannel for her to smell instead of the drain. She liked White Sandalwood the best.
I had a travel sized pot of the white sandalwood moisturiser at home, so I took it round once she was home, and I spent a long time putting it on her. I'm not sure whether it was because she was chronically dehydrated, or the liver failure, or the immobility, but her skin cracked really badly and she hated it. The moisturiser helped a little bit. I ended up buying her a massive canister of the stuff as a reward for being so brave. As an early Christmas present. As an attempt to make her smile.

And so I spent the rest of her life gently stroking her with moisturiser, trying to restore some life to her dying skin, trying to keep in contact with her because I was afraid. I recall me, Jess and Sooz ALL moisturising her at once on occasion. She loved to be touched. She had trained as a massage and aromatherapist when I was young, and she had such an art when she gave you a massage. Jess has the same gift, but I do not. But I tried. And I'm not usually very physical, but I wanted to do something.
But as time went on, her skin became unbearably fragile and painful. I hurt her by accident so many times, because I got the pressure wrong. She would snap sometimes; she wanted us with her but she wanted to be alone. She sat in the garden, covered in fleeces, reading magazines, chainsmoking, and we would sit by her and try to read too, but not really taking in the words. I would try to stroke away the sloughing of her skin, the chafing of her frustration - only very occasionally expressed - and try to make her feel normal again.
After a while, she lost the feeling in her skin. We could touch her properly again, although I don't know if she could feel it. Dad could move her more easily. Whenever I was with her, when she couldn't have a conversation, which was most of the time, I reflexively reached for the moisturiser. I brushed her hair. I did the same things I do for my babies when they are poorly. I tried to show her how much I love her.

And now I will never ever be able to smell white sandalwood moisturiser again without smelling the bag of toxicity hanging from my mother's leg. Without smelling the hint of cigarette smoke that surrounded her right up to 48hrs before she died. Without feeling the cracked skin under my hands, desperately trying to rehydrate her by willpower alone. Without recalling the desperate urge to somehow stave off her death.

Which is a shame, because it was my favourite too.

13 Jan 2017

Me? Doing a Masters?

I think it's a fair shout to say I haven't had the best start to doing my MA.

I signed up on July 27th. On July 29th, my mum became critically ill. I debated whether to defer for a year. I debated whether to do it at all. The more I read about the course, the more I wanted to do it.

I've been interested in social history for ever. I've spent the last year working on family trees for me and my friends, and become intrigued by family structure particularly in rural areas. I've got a talent for creating narratives from primary evidence, for constructing strong arguments, for finding links that aren't immediate obvious and for holding vast stores of intricate genealogy in my head. Local history extends this into the landscape - who lived where? Why did they live there? What did they do? What did they earn? How were they linked? How does this compare to other areas? It's a natural step up from family research and it appeals to my soul.
Then there's my mum. Mum loved social history. She was fascinated by the rise of leisure time in the Victorian era, and the link to the railway network and how resorts were created to supply demand. Having experienced the stigma of being a single mother in the sticks, illegitimacy interested her. Coming from a big family, and having one herself, she read about other big families. She encouraged me. We would talk about history more than almost anything, monologuing at each other on the phone for hours. When I did the preliminary tests for getting on the MA, one of the questions was on the rise of Blackpool. Mum was a bubbling torrent of information on it when I told her. I am devastated that she's not here to talk to about it all anymore. She didn't want me to do the MA when I first discussed it with her, way back in June. She thought I should go directly into writing (my eventual aim) so she could read it. But I didn't feel qualified to write about it without a single history qualification to my name.

So, I decided to do it anyway. My start date was 1st October, by which point my mum was nearing her end. I worked hard but sparingly. It is terribly difficult to focus when the person you need most is dying. You think about little else. You worry. You want to be with them. You don't particularly want to be reading about tiny Highland communities in 1780. Or doing anything really. It's hard. But I did it.
Then she died. She died and I had a deadline. I postponed the deadline, but I still knew it was coming. Everything I had studied before fell to fog. And since she died, every time I read something she would have loved to know about, I feel a stab. It's not fair.

So I wrote my essay. I struggled a bit, just to get my thoughts in order (complicated by having a general anaesthetic a few days before) and then to write it, to use a whole new system of referencing, and to write about something I've not really done before. There is a lot of crossover between modern history and sociology, but they require different styles, and the essay was theoretical. I got it in. I got 63%, which is far more than I hoped for. It was not easy to write, but I found my style and voice much faster than I ever have before.

Now I'm looking to my next essay, getting to grips with the vast amount of potential literature on offer, and having to decide for myself what is and isn't relevant. Before I began this, some mansplaining dick told me that there was 'lots of reading' involved in an MA. I was pissed off because...well duh, but it's the quality of reading that counts. History perhaps generates the most written material of any subject, and some of it is diabolical quality, and some of it is absolutely essential, and some of it is absolutely essentially and like wading through treacle. And you have to decide what's good. I am currently sitting with no less than six relevant books, another two on the laptop to work through, countless potential journal articles that might be useful. I might only use one paragraph from each book, but I need to find it. Your undergrad is SPOON-FED to you in comparison to this.
And I daresay for those who go on to do a PhD, a masters is equally spoon-fed.

I love writing history. I love writing, full stop, but history is a particular pleasure. Telling the story of people who lived long ago, who never hoped to be historically relevant, who did nothing to immortalise themselves. That's a privilege. Finding their stories, hidden in the records, and understanding their context. That's my favourite thing. Reading ancient newspapers is much better for the soul than reading facebook. I don't know if I can actually making a living doing this - probably not, the world is awash with historians and you have to be pretty fucking ace to get published - but even if I can't, I will try. I will try for my mum. I will try for myself.