COVID-19 Chronicles: Episode 1 “Solitary times in an information vacuum”

COVID-19 Chronicles:  Episode 1                       “Solitary times in an information vacuum”

If there’s one thing that raising an undiagnosed kid has taught me, it’s that living with uncertainty is hard. Not being able to imagine what the next year, month, week or even day might bring means that normal daily life is awkwardly bookended somewhere between denial and panic. You can fill the shelves with plenty of good stuff in between, but there are still days when the bookends themselves stand taller on the shelf than the many wonderful narratives they frame.

Today, the bookends seem to have grown like beanstalks after a long night of nourishing Spring rain. Somehow disarmingly taller in the morning, caricatures of the tiny seeds said goodnight to just the evening before.

Except these are the beanstalks of nightmares. Far uglier and more spectre-like than even the ones dreamed up by our infant selves after a particularly theatrical fairy tale reading before bed.

For many of us who have vulnerable family members, whether that’s a disabled child, a relative in treatment for cancer, or loved ones with long term conditions, we have been oscillating with greater frequency between denial and panic for some weeks now. Hoping that this viral colossus would swerve, or spare us, but with a rising, racing panic in our chests, galloping ever faster as the deafening silence from our government casts us further and further adrift.

Just a few weeks ago, gentle jokes flew around in offices and coffee shops about quite fancying the idea of two weeks at home. Not so much liking the idea of catching coronavirus, but if we had to hunker down for a bit, just imagine how organised our cupboards would be, the books we could read, the box-sets we could get stuck into… Even with the slightly alarming prospect of having to entertain the kids, it seemed to be a minor inconvenience, a distant and not too unpalatable concept.

For my own part, I had imagined that because we have a disabled child in the family, we might move on preparations a little earlier than most. Stocking up the cupboards, getting ahead on work projects, and being ready for the inevitable announcement that schools were to close. Special schools first, of course, because so many more of the children are vulnerable.

I trusted that this announcement would come well ahead of the threat of the virus itself. Many of us with disabled children thought the same. Cautiously ready, expecting to have to start our Easter holidays two or three weeks early.

Except it’s now Sunday evening, following a week of national lockdowns and school closures in just about every country but ours.

Three days ago our Prime Minister stood up on television and told the nation that ‘many more of us will lose loved ones before their time‘.

The medical and science experts who flanked him said nothing of how to avoid this human annihilation from happening, talking only of flattening curves by washing our hands, keeping football fans in stadiums and their loyal Tory fans off cruise ships while propping up the NHS by keeping schools and general society open for business while the virus sweeps through.

There was little talk of protecting those most at risk from this novel coronavirus.

Still nothing has officially emerged since that time to advise those most at risk, despite a rising death toll and exponential case growth against a backdrop of ever-decreasing diagnostic testing in the community.

However, government rhetoric since that day has erroneously cemented in the minds of media and the general population that ‘vulnerable’ is solely interchangeable with ‘elderly’ in the face of COVID-19. We are told (albeit informally for now), that soon our over-70s will be asked to keep themselves at home for months while this virus sweeps through like an interminable hurricane.

And yet our young vulnerable people, children with heart conditions, disabilities, epilepsy, respiratory impairments, are – according to current government advice – supposed to be packed off every day into what may be an invisible front line, the open beaches of public transport and school communities, where the silent hurricane could make first landfall.

Much has been made by our government leaders of having to set the country onto a war footing to see through this challenge.

And yet when we truly were last on a war footing as a nation, we protected our children and our most vulnerable from the front line. Not because they were the prime target of our enemy, but because that’s what civilised, humane societies do. 1.5 million children, pregnant women and disabled people were evacuated to safer locations in just two days.

Today, the threat we face is different but perhaps equal in magnitude and potential for suffering and loss of life. But we find ourselves in an information vacuum. Adrift and othered by the popular discourse that this is a ‘mild illness for most’, ‘children don’t seem to be badly affected’ and that we must ‘protect the elderly’.

We find ourselves nowhere.

As a parent of a disabled child who has no diagnosis, this is familiar territory. We are not a central part of any conversation. Sitting on the fringes of the disability community because most of us are not disabled ourselves, overlooked at the school gates because our experience of parenthood is so different, invisible in the workplace because we fall unceremoniously down the gaps between both parental and carers policies (where they even exist).

We are well versed in taking decisions to protect ourselves and our children and in doing so in isolation, because we do not fit the mould. We are well practised in spotting threats as they loom on the horizon and doing what we have to do to keep our children safe and well.

Often our instincts speak with razor sharp accuracy to pinpoint what needs to be done, well before the voices of medical or educational authority around us see it for themselves. We have witnessed them acting too late, too many times, to look to them now with unguarded faith.

With this experience behind us, and seeing more of the same as our government shapes its next Swiss-cheese tidings to the population in face of this new threat, it is with a familiar heavy hearted certainty that many of us will not be sending our children to school tomorrow morning.

We simply cannot trust our government to give the right advice to keep our vulnerable children safe.

Are we forgotten, or are we deliberately left out to perish?

I don’t know.

But with Darwinists and eugenics-sympathisers holding the rudder as we steer our ship through this storm, it feels safer to jump overboard while we can still swim for the shore and find a place to shelter while the hurricane passes.

Jean Vanier: a mother’s perspective on vulnerability and abuse

It was May 2019 when I first encountered John Vanier. A quiet morning with Radio 4 murmuring in the background, the polished voices of media intelligentsia companionably disregarded as I swept and wiped away the debris of breakfast.

Thought For The Day was on. Not being the world’s greatest fan of organised religion, I usually find it pretty easy to close my ears when this programme pipes up. But on that day the words of historian and Telegraph writer Tim Stanley, touched me profoundly.

He spoke of the recently departed Jean Vanier, who had died aged 90, considered a living saint for his work in establishing the worldwide L’Arche charity, a network of over 140 communities where people with learning disabilities are at the heart. Where those with and without disability live side by side, in community and equality, living simply but with a crystal clear eye for what matters most in this life.

Stanley spoke eloquently of Vanier’s embodiment of ‘upside down economics’ where people are valued for who they are, for their heart, for their capacity to love and be loved.

And in these words I recognised my own experience, as a parent of a child who has intellectual disabilities. Who has taught me so much, and brought my own hazy world view into unclouded focus. Whose purity of heart, honesty of emotion and sheer joy at being surrounded by love and fun give short shrift to any pride or envy I might feel towards others with more conventional success, opportunity or money than I.

I also felt hope.

Hope that in this world of increasing violence towards people and planet, there really are living saints. Those who are motivated by good. Those who truly see what I feel privileged to see, and experience in my daily life, and have the means to make way for it in society. Who listen and learn from those who don’t speak verbal language, are not politically powerful, nor able to influence with money or action, but can show us through just being who they are, what human existence really is. That is isn’t money, or status, or belongings. That it is love.

And I felt connection.

Connection to a network of people who lived and experienced my world. And whom I could perhaps consider a safety net. If it all went deeply wrong in my world, the part of my mind that needs a plan b had decided I could retreat there, to a L’Arche community. To put all my religious stereotypes and suspicions aside, and to immerse myself in that life. As a family we would have been welcomed, I have no doubt.

It also made me feel safer about what might happen to my son after we are gone. That there might actually be people in the world who would love and value him, taking care of more than just his basic needs and helping him to flourish and find community.

Vanier spoke to me in a way that few others in public or my own life have done so.

Most people that we meet in our lives are kind. We experience very little stigma. And yet I know, I can feel, that under the surface of most people’s kindness there exists a huge gulf of understanding. Perhaps they feel sorry for us, they find my son’s disabilities sad, or find some strange inspiration in our determination to live a normal life.

And that is where the gulf lies.

Because I know they don’t really get it. They don’t value my son for who he is. Not really. They see deficit. Loss. Hardship.

Society still pushes people with intellectual disabilities to the margins, but Vanier wanted to place them at the very heart of society. He believed that this way people, and society, could find not just grace but peace.

I found Vanier inspiring. I wanted to tell everyone about him. To show them that intellectual disability isn’t the life sentence of hardship that so many believe it to be, and that here was a man of influence who could convince them. More powerful perhaps than just another (clearly deluded) mother of a disabled child boring on about how her child actually has a great life, and finds happiness and fulfilment, despite his disabilities, and brings joy to all he meets.

But this week brought terrible news. Not the galloping spectre of coronavirus, or even the verdict of the Weinstein trial. Something just as malevolent for all who are connected in some way to L’Arche, however distant and for those with vulnerable people in their families.

Jean Vanier, once considered a prophet for our troubled times, has been exposed as an abuser. A report produced for L’Arche International has shown that Vanier engaged in ‘manipulative sexual relationships’ with women who worked in his communities over a period of 35 years.

Of course, we know nothing of whether Vanier’s sexual and spiritual abuse stretched beyond those who worked for him towards the vulnerable within L’Arche communities. The charity has been keen to point out that there is no evidence to suggest this but how we can know with any certainty, is surely a discomforting impossibility.

This news has left a deep and piercing cavity of distrust among those who love and care for people with intellectual disabilities.

For it challenges everything we thought we knew about how and where abuse happens.

The narrative of late has shone a light on institutional abuse of people with autism (a neurological not an intellectual condition), and people with learning disability. We know from this narrative that when vulnerable people are in the care of people who lack knowledge or compassion, in places where safeguarding the system and the financial bottom line matters more than helping an individual to flourish, that devastating abuse happens.

We know that when love is stripped away from care, we end up with Winterbourne View, Whorlton Hall, the unforgivable mistreatment of Beth, and Connor Sparrowhawk, and the many many others that have not hit the headlines but sit hidden in Serious Case Reviews in NHS filing cabinets.

But when love and abuse sit side by side? It becomes more than a little complicated. When a shining light in our world is revealed to be nothing more than an illusion, a monster in disguise, how do we begin, or continue to trust those who seemingly love our children?

I have wrestled with this thought since the weekend when the Vanier abuse story broke. And the only conclusion I can come to is that we have to trust our guts. For when something seemingly beautiful has an ugly heart, it is usually our guts that can tell us, well before any cognitive or rational recognition can be found.

Last year when I read one of Vanier’s books, ‘A Cry is Heard’, I was inspired by his words but I also felt a tinge of discomfort. One that I brushed aside at the time but this news has shown me that I should have listened harder.

The way Vanier wrote of being brought to personal grace by being in the presence of people with intellectual disability felt usury to me. The entirety of his book centred on his own path to peace, his own redemption and finding of true meaning. The voices of the people within his communities were conspicuous by their absence.

And as I turn my thought to those who support us and care for our son, I know that I have only felt this same sense of disquiet once. A therapist slightly too entranced by my son, a warmth of welcome a touch too familiar, an approach just a little too personal. Seemingly extremely knowledgeable, and deeply compassionate, but I couldn’t shake my discomfort. I kept quiet about it, as others who saw the same therapist apparently didn’t feel as I did, crediting this person with having changed their lives. But we didn’t go back.

Maybe I was right, maybe I was wrong, but the exacting parallels of feeling I had in the presence of this therapist, and while reading Vanier’s words, have taught me that perhaps the best way I can protect my child is to keep listening to my gut.

What happens after I am gone I do not know. But for now, while I hope I never have to use it, my second brain is firmly in gear.

On your marks, get set…

Image by MonikaP from Pixabay 

When was the last time you relaxed? Really, truly, let it all hang out and drift away? Empty headed, loose limbed, unclasped. With nowhere else to be in body or in mind.

I had this conversation with myself last week and realised I couldn’t remember a time since the birth of our children when this has actually happened.

And yet, even with a pretty complicated household that requires a lot of heavy lifting and creative parenting, I couldn’t put my finger on why?

Why is it that when sleep comes, it brings with it a fistful of things I’ve forgotten to do and an anarchical narrative of chaos? When dreams are supposed to perform our back office mental filing, why are mine more of an apocalyptic helter skelter?

Why is it that even in the narrow windows of downtime, I always feel like I am waiting? That my attention cannot commit wholly to a task, a project, or even a book because at any second it is likely to be needed elsewhere.

I’m pretty sure that even in the pitch-dark sensory detachment of an isolation tank, I’d still have half an ear or an eye open and ready.

Stuck at the start line, expectant for a gun to fire that signals me into action. Sprinting to intercept a meltdown or ambush a silent choke on a mouthful of dinner. Picking up the perpetual baton of moving the day forward for children who can’t or maybe won’t do this for themselves. Seeing the hurdles of the SEND system as they come into focus on the horizon and conceiving of how to scale them, before a fall comes.

I am sure this feeling of being always on, always ready, is not at all unique to mothers and fathers of children who have disabilities or health conditions. Perhaps this is just what happens when you put a little piece of yourselves out into the world?

It’s just that, for us, maybe it’s heightened. The light switch is always turned to full, never dimmed even the slightest.

That meltdown isn’t a tantrum that can simply be ignored in the hope it will run out of oxygen, that phone call to book a brain scan or arrange a wheelchair handover isn’t one that can be sent to answer phone to be dealt with another day, that small sound in the darkness of the night might be nothing, or it might be a seizure.

The question of ‘what if’ is always looming overhead, its intensity pressed down on us by the knowledge that we are constantly under the gaze of armies of public sector workers that keep watch over our lives, circling around us in the name of support.

We know we don’t have to be perfect, but there is judgement, and reporting, and for that I know I don’t want to miss a single thing. We never know whether that circling will bring safety, like dolphins protecting their young, or threat, like vultures, sniffing and gliding in search of prey.

There is no off switch. There are very few moments when it is possible to unclip your spikes from the starting blocks and sit down on the warm grass to enjoy the view.

The only option as I see it right now is to buy a really comfy pair of spikes, and maybe some knee pads, and settle in for the long haul. Right there where we need to be, in the starting blocks. Ready to go when our children or the systems that support them need us to spring into action.

The emotional rewiring of being a Grown Up

The emotional rewiring of being a Grown Up

The Grown Ups. The rule makers. The tea drinkers. The ones who keep the cogs of daily life churning and will always be there ‘in a minute’. 

As a child, the Grown Ups were also the ones who would say deeply irritating things.

Like endlessly and predictably commenting on how many inches I had grown (when I hadn’t) and prevaricating about how tall I would be (which I’m not). This happened to me so often that I had to cultivate a special face for dealing with it politely.  

That same face was deployed as armour against any adult wafting around a nostalgic mist about how simple life was being a child and ‘if only we knew’. It also came out when presented with Something Disgusting at someone else’s house; Cadbury’s Smash, orange squash, tinned spaghetti hoops or anything in a box labelled Mr Kipling.

It doesn’t seem to be impolite for children today to say they don’t like something but in 1980s suburbia that was unthinkable. If you wanted to be invited round for tea again, you’d coerce down the gullet whatever offending slops were put in front of you.

I couldn’t wait to be a Grown Up so that I’d never have to eat Cadbury’s Smash again, no-one would ever again comment on my height, and life would be simple. I didn’t care for nor heed the humming narrative around me about how I should relish the joy and wonder of my Golden Days of Childhood – (which people don’t really talk about anymore either, I wonder why?)

As a child, most things in life were black and white. I liked my dinner, or I didn’t. My room was tidy, or messy. Becky was my best friend, or she wasn’t. I was good, or naughty. Happy, or sad. Excited, or frightened.

There were distinct and opposite ways of being, which could oscillate wildly in mere minutes, but which had very little grey space in between.

If I have learnt anything about life since that time, about what it means to be a Grown Up in the 22 years since I officially became an adult, it’s that the familiar and comfortable black and white of childhood existence starts to disappear.

Eventually, the grey space in between completely takes over. An unspoken and shapeless emotional jumble that mushrooms with age and experience.

For me, motherhood brought my first real living experience of that emotional jumble. Having a disabled child brought me into a head-on collision of love and joy for the new little person in our lives, tangled inseparably with fear and sadness.

How could I sit amidst this jumble, hitting the top and bottom of the emotional octave, when it felt impossible to play in a major and a minor key at the same time?

I craved the emotional clarity and sharpness of younger years. The simplicity of childhood that wasn’t so much golden, as black and white. Suddenly it made sense, what the Grown Ups had said that I’d found so irritating, and had to put on a special face for.

As I have learnt since, humans are naturally hard wired to become accustomed to this grey space. As we age, our deeper understanding of mortality brings with it a phenomenon known as ‘poignancy’. The wisdom of elders which holds the knowledge that even negative emotions have to play a role in a truly good and fulfilling life.

 As we get older, it’s been proven that we get better at navigating seemingly contradictory emotions at the same time. (For the scientifically minded, there’s a brilliant study here).

We have to learn how to do this, otherwise how would we countenance waking up in the morning aged 90, when so many of our nearest and dearest are in holes in the ground?

Sometimes though, we have to get good at juggling and spinning our emotions far sooner than we are ready for. To learn to sit with sadness and happiness at the same time. To hold on to hope when we are afraid. To show compassion when we are angry. To stand up when we are weak.

Motherhood has knocked me down more times than I can count. As any parent of a disabled child will tell you, the complicated inner journey of parenthood is all the more frequently shaken and stirred for us. The emotional twists and turns are raw, real and often unexpected.

This also means that the ‘poignancy’ of life, that allows us as humans to co-exist with a jumble of emotions, is very present for us. We find it sooner, perhaps. At some point, it actually starts to feel okay, normal even, to feel sadness in happiness, and happiness in sadness. Emotions that have once been polar opposites now sit alongside each other in a harmonious mash up.

Now I just like to think of it as an early awakening. Because at some point, for pretty much all of us, shit gets real. Uprooted by cancer, disability, loss, grief, our unquestioned foothold on the world will falter. At first we long for solid ground but then we learn that there is no ‘getting back to normal’, just finding a new one.

Being a Grown Up isn’t defined by the appearance of an under neck chin bag (thanks for pointing that out, dear daughter) nor the disquieting ability to purchase alcohol without being asked for ID, it’s learning bit by bit to exist comfortably in the gloriously technicolour grey space. 

Why I won’t be writing a countdown to 40 bucket list

Why I won’t be writing a countdown to 40 bucket list

 

9 months. Long enough to grow a human baby, or about 5 inches of hair. Time to complete a university academic year, or perhaps grow a banana plant.

Exactly 9 months today, I will turn 40.

Apparently that’s when life begins. Apparently it’s also the time by which a person should have ‘challenged oneself to do something that seems impossible’, ‘been on safari’, ‘read every book by a favourite author’ and ‘learnt about wine and cheese pairing’.

By those standards, I am perhaps running out of time. And I’m a literature graduate who really likes wine and cheese.

I have watched lions devour meaty carcasses at Longleat from behind my car window, and I have challenged myself to eat whole chillies and to stay awake all night, but I’m pretty sure the list makers would tell me those things don’t count.

Apparently it’s also the age by which a person should know their net worth (zero) and also know how much they have saved for retirement (also zero). That’s two ticks in the box there then. Or crosses. Whatever.

I’m not sure how I imagined my life might be at nearly 40.

If you’d asked me aged 10, I’d have said I’d be in the army or an equine physiotherapist, most definitely with no husband or children. Yuck.

Ask me again in my early twenties and I’d have forgotten those dreams and acquired some level of interest in men, babies if really necessary. Consciously or unconsciously shaped down a more conventional path, wallowing in dreams of writing literature while panic-buying jobs to pay the bills.

Ask me at 30 and I’d have convention written all over me with a husband, child and a mortgage in tow. I’d have imagined 40 would bring a beautiful house, travel, a sophisticated capsule wardrobe, children accomplishing amazing things.

Ask me now, having thrown convention somewhat to the wind by having a disabled child (not planned) and moved to Cornwall (somewhat planned) and I’ll show you a money-pit with grand plans always slightly beyond budget, camping holidays, a motley collection of clothing either too big or too small (mostly too small) and children accomplishing amazing things, just not the ones I expected.

When your children have special needs, pretty much everything becomes an amazing accomplishment, even if that thing is learning to crawl across the living room floor aged seven. Not how I expected. Not worse. Not better. Just different.

If 40 is supposed to be when life starts to get a little easier, I can’t imagine it being that. If it’s supposed to be the beginning of the end, I can’t imagine it being that either.

And yet it does feel like a milestone.

To be celebrated. Or marked in some way. I feel the need to do something.

I’m pretty sure I’ve already had at least one mid-life crisis. I have quit a multitude of jobs in my time. Moved to the seaside. Started a business.

I don’t need to burn the house down and start again.

So what next?

Maybe it’s time for pink hair and another tattoo. Time to finally write that book, or take up yoga.

Perhaps.

What I hadn’t anticipated, though, was the need I feel nine months from d-day to literally and metaphorically get my house in order.

I don’t know if this is typical behaviour in the final countdown to 40 or a hangover from the ‘living in survival mode’ for so long that having a child with special needs brings. Maybe it’s not either of those things, but a natural follow on to burn out. Rebuilding from the ground up. Taking control from chaos.

All I know now, with nine months to go, is that at 40 I’d like to feel like I’ve got my shit together a great deal more than I have right now.

For me, there will be no adrenalin filled ’40 before 40′ bucket list. No list of must haves or must dos. But I do want to take control. Get organised.

Maybe that’s just called being a grown up and I’m actually decades behind?

I like to think instead there’s no such thing as ‘grown up’, these days and its all just an iterative process of getting gradually better at being human, step by step through life.

Either way, the next nine months bring with them an exciting cocktail of Slimming World and Kon Mari.

Shifting unwanted belongings in more way than one.

Being left with only the good stuff.

Making space.

Space for life to begin, maybe.

Like Carl Jung said, the first forty years ‘you are just doing research’ after all…