A coronavirus fairy tale

Once upon a time a beautiful Princess fell in love with a handsome Knight. The King set them up in one of his many castles, and within a few years they had created a family of their own, adding two Little Princesses to the Royal Gene Pool.

But one day, a terrible illness spread through the kingdom, and everyone had to stay in their homes. The Knight drew up the drawbridge and swore he would would keep his family safe.

The Princess and the Little Princesses were now stuck in the castle, and the King and Queen were very upset. The Queen went to the castle, but the Knight wouldn’t let her in. The King told the Knight that he was being ridiculous and that rules don’t apply to Royalty, but still the Knight wouldn’t let down the drawbridge.

Alas! Alack! Despite the Princess and Little Princesses being safe behind their walls, and the Knight claiming he did not want to pass on the illness to the rest of the Royal Family, it was a situation that could not be borne. After all, Princesses, and Kings and Queens for that matter, could not be expected to do as the peasants did.

And so the Princess sent messages to the King and the Queen, and the King and Queen sent messages to the Princess, and they all agreed the Knight was in fact an evil Ogre who had deceived them all these years. He had weedled his way into the Royal Family and kidnapped the Princess, and was now holding her and the Little Princesses prisoner.

So they came up with a secret plan, hoping the Ogre wouldn’t find out. When the Ogre lowered the drawbridge so the Princess and the Little Princesses could go out for their daily ‘exercise’, they would instead sneak off to the palace and play with the King and Queen.

Their only mistake was asking the Little Princesses to lie to the Ogre – unless underestimating the Ogre was also a mistake, because he knew all along, and knew this was just an illusion.

You see, the Ogre wasn’t really an Ogre – he was always a Knight. And the Princess had her own keys to the drawbridge, and could make her own decisions. He reminded the King and the Queen of the rules, and that the Princess was an adult and could come and go as she pleased, and suggested that in future they should support him through this difficult time, and not undermine him with the Princess as it was having a detrimental effect on the Little Princesses.

Little did he realise, he was actually dealing with Dragons. Dragons who would rather see the kingdom in flames than do as they were told. Dragons who would sooner have the Knight cast out of his family than relinquish their control of the Princess.

But there was one thing they forgot. In the end, the Knight always slays the Dragon.

Always.

Since the Dragons owned the castle he lived in, and the Princess sided with the Dragons, the Knight didn’t know how he would keep the Little Princesses safe. He didn’t know where they would live, or if the Princess and her Dragons would try to take them. He suspected the Dragons would claim he was really an Ogre, and use all their resources to destroy him. All he knew for sure was that this wasn’t a fairy tale, and that there was no longer any hope for a happily ever after.

Coronavirus and my four-year-old’s fear of death

Every night when I put my kids to bed, I read them a story, kiss them, cuddle them, tell them they’re loved, turn out the light and then sit in my bedroom next door for ten minutes in case of problems. It’s a relaxing time of listening to their childish conversations drifting down the hallway while I read a book, though it can be abused, like last night when my four-year-old came into my room 90 seconds after I’d left, saying she’d had a bad dream.

‘In a minute-and-a-half, you already fell asleep, had a bad dream, woke up, climbed out of your bunk bed and came in here?’

‘Yes.’

‘I don’t believe you.’

‘Well, it wasn’t an asleep dream, I had my eyes open.’

‘Oh. So, not a dream.’

‘Can I stay in here with you?’

Normally I’d send her back to bed with a flea in her ear, but at a time like this, I figure I have to bend the rules a bit. ‘Go on. But only for a few minutes.’

‘What are you reading?’

War and Peace. There’s no better time than right now.’

‘Can you read it to me?’

‘Not really, sweetie.’

Then my two-year-old came in and refused to leave, so last night saw me and my daughters cuddled up on the bed as I pretended to read them Tolstoy, but instead made up a story about a magic horse and the girl he befriended. I bet they can’t wait till they get to read ‘grown-up’ books now. How disappointed they’ll be!

But it was much better than the night before when things took a decidedly more morbid tone.

I was listening to their conversation as usual when the little one told the big one to go to bed. The big one must have misheard, because she said, ‘I don’t want to be dead, because when I’m dead, I won’t be alive anymore, and that’s sad.’

Nothing followed this, so I turned back to my book.

About a minute later, she appeared in my doorway her fists balled in her eyes, and sobbed, ‘I don’t want to be dead because then I won’t see you or mummy anymore!’

‘Come here,’ I said, and gave her a big cuddle. ‘Why are you thinking about dying? Is it because of the virus?’

‘Because I might get ill,’ she cried. ‘And when Aunty Sue got ill, she died and it was sad.’

‘Oh sweetheart. I’ve told you before, this virus doesn’t really affect children. The youngest person who’s died from it was a teenager. You don’t need to worry about dying because it’s not going to happen for a very long time.’

‘But what if you and mummy die? Who’ll look after me?’

‘That’s why we live in families,’ I said. ‘There’ll always be aunts and uncles and cousins and nieces and nephews and friends around when we’re gone.’

‘But I won’t have a mummy and daddy anymore.’

‘No, you won’t. But by the time that happens, you might already be a mummy yourself.’

Then came the really awkward question: ‘Where do you go when you die?’

‘Where do you think we go?’

‘My friend at school, her grandpa went up into the sky. He was ill so he went there to get better, but he can’t come back.’

‘I think that’s as good an answer as any,’ I said. ‘Nobody really knows what happens when we die. Lots of people think we go to a place called heaven, a nice place above the clouds where everything’s great. Others think that when we die, we’re born again as babies with no real memory of our former lives.’

‘What do you think happens?’

‘I really don’t know,’ I said. ‘I quite like the idea of a family of souls. Every time someone in a family dies, they’re born back into that family somewhere down the line. So if I die, and then you have a baby, I’m that baby. Which makes me my own grandfather.’

‘But you can’t be my baby! You’re my daddy!’

‘Yeah, you’re probably right,’ I said. ‘Whatever happens, nobody’s ever really gone. I’ll always be part of you, in your thoughts, your memories, your DNA. I will live on through you, and you will live on through your children. Dying is nothing to be afraid of. It’s sad, but it’s normal. It’s okay to be upset, and it’s okay to miss people, but we have to accept it and let them go. Life is for the living.’

Then my two-year-old came in and, completely failing to read the room, pointed at my man-boobs and said, ‘Bluebell and Buttercup.’

Bluebell and Buttercup are our guinea pigs.

My eldest is worried about death. My youngest thinks I have breasts like a South American rodent. Those parenting classes never prepared me for this!

Finding certainty in uncertain times

Go onto social media. Pick up a newspaper. Ring a friend. Switch on the news. What are you guaranteed to encounter?

Speculation.

Often quite rampant speculation. In the internet age, we are all epidemiologists and experts in public health; we are all fortune tellers and soothsayers.

How long will these restrictions be in place? Two weeks, six months, eighteen months, forever. We’re flattening the curve; we’re protecting the vulnerable; we’re shielding the NHS; we’re acquiring herd immunity; we’re buying time to find a vaccine.

What further restrictions will be imposed? We won’t be allowed outside at all; the army will be on the streets; there’ll be rationing; we’ll have to eat cats and dogs.

Why has Italy been hit so badly? It has an elderly population; they were already in the middle of a flu epidemic; they have a high proportion of smokers; they’re a tactile culture; they didn’t obey lockdown; they live in multi-generational households; they closed the schools before the workplaces, exposing the vulnerable to the superspreaders.

How many will die in my country? 6000; 20,000; half-a-million; everyone. The death rate is much higher than we’re being told; much lower than we think; 10%; 0.4%. The statistics are different because of how they’re recorded; how many tests have been done; whether they died of coronavirus or with coronavirus. We’re two weeks behind Spain; three weeks behind Italy; ahead of the curve; better.

When will it end? When everyone has acquired herd immunity; when there’s a vaccine; when there’s a proven treatment; when it mutates to become more or less deadly; when we’re all dead from it.

And what will life look like afterwards? It’ll go straight back to normal; it’ll be entirely different; people will care more; people will hate more; we’ll be poorer; richer; safer; more vulnerable.

Speculation, speculation, speculation.

I understand why people are searching for answers – humans hate uncertainty. Uncertainty is dangerous. It’s terrifying. We don’t know how to protect ourselves from the unknown, so we feel vulnerable. People right now are living in a state of continual fear, and they’d rather live with an uncomfortable truth – a deadly but known danger – than endure the unknown.

Trouble is, in a situation like this, there are no answers. We don’t know how long it’s going to last; we don’t know how it’s going to end; we don’t know how many will die or what the world will look like afterwards. Ahead of us and around us is a vast, empty unknown. We’re walking on the edge of an abyss, liable to fall at any moment. How can you not feel anxious at such a time?

If it’s any help, as an autistic guy who spends his life living under the shadow of the unknown, you have to take comfort in the things that are known, and those things you can predict.

Like the fact that the sun will rise tomorrow. The sun has risen every day for the past 4.5 billion years; it will continue to rise long after we’re gone. The rhythm of the planets is eternal.

There will be two high tides tomorrow, and two low. The Earth and moon are locked in an endless ballet, and whatever happens with mankind, that will not change. It is immutable.

There will be life in one form or another for countless years to come. Every living thing on the planet has an unbroken chain of lineage extending back 3.5 billion years. Through billions of generations, every single one of your ancestors managed to reach sexual maturity, find a partner and reproduce before they died. Life today is the culmination of billions of survivors. There will be billions more generations to come.

We can’t say anything with such certainty when it comes to coronavirus. We don’t know when it’ll end or how, how bad it’ll be and who’ll survive to come out the other side. But we can say, with absolute certainty, that we will survive, and it won’t last forever.

How do I know this isn’t the end? Because modern humans have been around for 200,000 years. We’ve only had a germ theory of medicine for 150 of those years. We’ve only had antibiotics and antiviral drugs for 80. Yet we’ve survived Russian flu, Spanish flu, Asian flu, the Black Death, smallpox, leprosy, cholera, malaria, polio, meningitis, measles, HIV/AIDS, yellow fever, rabies, tuberculosis, typhoid, dysentery, diphtheria, and syphilis.

I was born in the 1970s. Most of the people reading this will, like me, have lived through the Troubles, the Cold War, the Iranian Embassy Siege, the Falklands, the Poll Tax Riots, shell suits, the fall of the Soviet Union, the Gulf War, Waco, Diana, Dunblane, Columbine, Y2K, 9/11, the War on Terror, 7/7, SARS, MERS, Swine Flu, Bird Flu, the Credit Crunch, 2012 hysteria, the Paris Terror Attacks, the knife-crime epidemic and Brexit. We’ve taken all that life has thrown at us, and we can take plenty more.

If you want certainty, there it is. We’re going to survive. We’re going to get through this. It’s the one thing I have no doubt about.

The importance of language

I’m a writer. I believe that language creates the world. That’s why, at times like this, it’s so important to watch our language.

‘We’re stuck at home for the next few weeks’ creates an entirely different mental space than ‘We’re at home for the next few weeks.’

‘I can’t cope’ is a self-fulfilling prophecy, whereas ‘I’m finding this hard but will get through it’ gives you strength.

‘I hate my wife and kids’ generates resentment in your chest, while ‘Finding my family difficult at a difficult time is perfectly normal’ keeps your relationships healthy.

And saying, ‘It’s not a problem, I’m enjoying this downtime,’ is better than screaming, ‘Holy shit, it’s the end of the world and we’re all going to die!’

Changing the language you use is a quick and easy way to change your mood and your attitude. Our body tends to believe what we tell it. Smile and it makes you feel good. Stand up straight and lift your chin, it makes you feel confident even when you’re not. Force yourself to breathe slowly and deeply when you’re panicking, it calms your body down because if you’re not hyperventilating, there’s nothing to panic about, is there?

The opposite is also true. Hunch your shoulders and huddle up, you feel edgy, as though you need protection from the world. Frown and you feel bad. Laze about and you lose all motivation to do anything that helps you.

So start telling yourself the reality in which you want to live.

What applies in your own home applies to the world outside. Be careful what you read. Be careful what you listen to. You can’t have a healthy mental space when you fill it with negative words.

A brief survey of headlines is enough to make you die of fear. ‘Killer disease’ is far more terrifying than ‘Covid-19’; ‘chaos’, ‘panic’, ‘tragedy’, ‘death toll’ are much worse than ‘hope’, ‘solidarity’, ‘positivity’, ‘recovery’.

So in this time of crisis, do what I tell my children when they’re moaning and whining: use your words.

And forgive yourself the occasional weakness, outburst, rant or cry – you’re only humsn, after all.

Home Support during lockdown

As a person with autism and depression, and a wife with both autism and Emotionally Unstable (Impulsive) Personality Disorder, I have home support. This means that twice a week, a support worker comes to my house for three hours to support me with my activities of daily living – making a menu plan, cleaning, washing, sorting the post, basic self-care, and all the things I don’t do when left to my own devices.

This help is essential, not just to keep me safe and hygienic and stop me getting into a mess with my finances and medication, it is my only means of ‘offloading’ my obsessive thoughts and preventing me descending into depression or worse. When you have autism, your thoughts often spiral out of control, particularly when you don’t have time to yourself, and left to their own devices, they can take you to a dark place indeed. Support workers help you put your thoughts safely to bed.

In my book, I explain my need for neurotypical support using a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t better or worse than neurotypical people, we simply have different wheels suited to a different surface.

So I need home support. Not only that, Social Services deem that I need six hours of support a week. I’ve thought carefully about this in light of coronavirus, and discussed it with my autism support service, and since caring for vulnerable people in their own homes is one of the government’s exceptions to the ‘stay at home’ rule, I don’t see anything wrong in continuing to have a carer.

My support worker engages with four other households. The way I see it, if our five households are doing what we should (i.e. staying at home and not interacting with family members), and she’s doing what she should (not seeing friends and family), then we’re a closed unit. If she gets coronavirus and passes it on to us, it will end with us – we certainly won’t be passing it on.

And this is why I believe it’s okay to have a support worker come round twice a week, but not okay to have friends or family round. My support worker is not a friend – she’s a key worker in the field of social care carrying out care in the community. She is here for work, not socialising.

Unfortunately, not everyone in my wife’s family sees it this way.

If I see my support worker, they think they should be allowed to visit too; and if I don’t allow them to visit, then I shouldn’t be allowing a support worker into my house either. That’s right, they think two people who are unable to live independently without support at the best of times should now live independently without support at the worst of them. All in the name of ‘fairness’.

There’s a line from the criminally-underrated What About Bob? where Bill Murray says something like, ‘Treat people like a telephone. If there’s a crossed connection, you just hang up and dial again.’

I used to believe that. Now I think perhaps there comes a time when you have to rip that telephone from the wall and throw it on the bonfire.

Day Five of Home-Schooling: teachers, you are busted!

I saw a lovely thing on Facebook last night from a school up in Surrey. It told its parents that what we’re doing right now isn’t home-schooling. Home-schooling is a choice where you considered things, planned for it, and were ready – this is more like distance-learning. But in reality, it’s trying to stop the spread of coronavirus.

It said that parents have always always been the child’s primary educator, but are not trained teachers, and that if you feel it’s better for your family to play in the garden, bake, or watch TV, that’s your right and there’s nothing to feel guilty about, because these are exceptional circumstances.

And it said that it’s impossible to facilitate distance-learning with a primary-aged child and work from home at the same time, so if you’re doing that, stop. Your primary focus is your job and your survival. You’re not a superhero. They’re not expecting miracles.

I thought it was great. Very insightful and reassuring.

Then I got an email from the headteacher of my school down here in Dorset sharing some of her thoughts. She said that home-schooling is a choice, whereas this is more a necessity. She said that parents have always always been the child’s primary educator, and that if you feel it’s better for your family to play in the dirt, bake, or watch TV, that’s your right and there’s nothing to feel guilty about. And she said that if you’re working from home and juggling home learning at the same time, STOP – you’re not superheroes. Your focus should be your job and survival.

Sound familiar?

Looking on Facebook, it appears that many headteachers up and down the country have had the exact same thoughts as each other at exactly the same time. How weird!

You know when every kid in the class copies from the same book and they put it in their own words so they don’t get accused of plagiarism? Teachers, you are busted!

Now, I don’t mind that they’re all copying from the same source. It’s a good message and it deserves to be spread far and wide. But don’t pretend as though it’s something that just occurred to you. And perhaps next time, don’t use many of the exact same words!

The only people who don’t know about coronavirus…

…are the assholes in the Department of Work and Pensions.

My wife receives PIP (Personal Independence Payment) – what used to be called DLA (Disability Living Allowance) – to help her cope with her needs.

When they came up with PIP, the government outsourced the transferral of people over from DLA to an external company called Atos, whose remit was pretty much, ‘Cancel everyone’s benefits, make it next to impossible to appeal, and see how much money we can save.’

Now, delegating the decision on who gets welfare to private industry is essentially the government saying, ‘We don’t give a shit about the needy and we can’t do our jobs so let someone else sort it out,’ and that’s how it worked in practice. Atos would reject almost all applications for PIP and then make the appeals process a logistical and administrative nightmare in the hope that a significant proportion of claimants would be incapable (i.e. too vulnerable) to appeal. You know, a really caring, morally upright philosophy that proved so popular they had to change their name to Independent Assessment Services to avoid the backlash.

That’s the reason why, when they moved my wife from DLA to PIP, they decided she was 100% capable of looking after herself on her own, despite her having supporting documents from Social Services, her doctor and her autism support service to say she was quite incapable of that. It then took six months of appeals for them to concede that, okay, they were wrong, she’s a nutbar.

The DWP are the people who ask someone with Downs Syndrome, cerebral palsy, a hole in his heart and severe scoliosis that confines him to a wheelchair to attend a fitness-for-work interview. They’re the people who ask terminal cancer patients when they think they might get better. They’re the people who at my interview asked me how to spell autism, and then told me I must be really good at Sudoku.

So it really shouldn’t come as a surprise that they haven’t noticed we’re in the middle of a global health crisis.

Today my wife received a letter from the geniuses at the DWP saying that, as she’s had PIP for a year, they need to see if anything’s changed. There isn’t an option to say, ‘Nope, still autistic.’ There is, instead, a 24-page form that must be filled-in in excruciating detail, with corroborating evidence from Social Services, the autism support service, and her GP, to be returned by the 17th April, or they will cut her off.

By my reckoning, that’s three weeks away. We’re now only three days into a three-week lockdown where we have to stay at home, everyone’s off work, doctors, social and care services are stretched to breaking point, and we can’t see our families for support filling in a complicated, misleading form. Are they freaking joking?!

I’d only just managed to calm her down about coronavirus when this little present landed on our doormat like a wet turd to stink out the house we can’t leave. I was never a fan of Jeremy Corbyn, but I can’t help thinking that this kind of shit would never happen under a Labour government.