Skip to content

Posts from the ‘Life’ Category

We are not OK and that’s OK

img_1098-1

Dylan the dog coping with the chaos

Whilst over Christmas we might have looked like lucky buggers with enough time and money to be swanning off to Australia, in truth it was more like “pinch from Richard’s pension to have a holiday of a lifetime because we don’t know what scary news 2018 will bring with his brain scan looming”.

We hadn’t had a holiday for many years and we’d never had a big holiday. And we’d only ever had one family holiday with all five of us – which Tess was far too young to remember.

Richard had almost stopped surfing and we were both suffering from anxiety. The shop takings were down, the books weren’t balancing and we’d borrowed money three times to see us through winter and for much needed home improvements. We’d both also had 10 years of various physical and mental health wranglings to deal with on top of losing both our fathers.

Rich doesn’t like talking about this stuff. He grins and tells everyone he’s fine even when he’s absolutely not. He internalises money worries until he’s ill. So I joined him in the stoic front while privately I was in turmoil about his health and our future.

Grin and bear it is not my style though and I found it difficult to pretend – particularly as I had done months of research and knew the various reasons for tremors, and had contemplated the possible outcomes and the effects on not just his but all our lives.

While we were away thoughts of what we would be returning home to prevailed, and on the flight home I watched Richard’s tremor increase with the tiredness and anxiety, and wished I could stop it. I wished I could turn off his brain and give him a break.

When we returned from Australia in early January we had to gear ourselves up for hospital appointments and test results with months of winter still left to plough through. Surely it was finally time to stop pretending we were okay?

I eventually broke my silence and told Richard to prepare himself for a positive Parkinson’s diagnosis. I was worried that he had been hanging on too long to his former GP’s opinion that it was “just a tremor” and to the story he was telling himself and others that the scan was just to “rule out” Parkinson’s. I could see him coasting into yet another year of stress and full-time shop-running shenanigans without giving himself time to process the enormity of his own health issues. We are complete opposites when it comes to denial or self awareness and discussions of such, and I could foresee life getting very difficult with this “just keep plodding on” mentality of his.

It was time to dig deep and lay it all out.

So for seven months I have pushed to put what is important to the fore. I have made all our actions and visions and plans about family life and simple life; about peace, about reducing stress, about visualising what is best for all of us and making it happen. I am trying to force us both to recognise and accept – and love – each other’s quirks and limitations and work around them to make them no longer limitations.

Money, school grades, possessions, appearances, status, other people’s ideas about a life well lived are all off our radars. Bugger all that. We’ve bought a small unassuming house in order to pay off our mortgage, and don’t give a flying fig what people think of us.

Life is now going to be about acceptance, day-to-day appreciation, little stuff, beauty in nature, eating well, and space. Space in our heads, space in our timetables, space away from duty and phone calls, space away from the rat race. We have split open everything we ever were on the surface and are being the real us that we always were anyway – before we stopped lying.

And I do believe silence is a lie.

Other people use lies to survive, I get that. People need to ignore the truth in order to cope. Some people’s very existence depends on being as unaware of their true selves as possible.  But we’re using the truth to live by. The painful truth and the honest truth and the comfortable truth.

The hurdles to getting to that truth are huge though. We have a list as long as our arms of things we need to achieve and throw off, to finalise and to tolerate for a while, and we’re only down to our elbows so far.

We are exhausted. Richard’s tremor is awful. I feel sick regularly. I run out of peopling energy regularly. We are absolutely pig sick of eating out, of microwaving, of being uncomfortable. I don’t usually eat bread but I have had to for the last few months and I have a constant bread belly pain. We don’t sleep well at night, we get up early each day in case the builders/plumbers/electricians are here. We are unnerved by the inconsistency of life on a building site and of never knowing when noises will stop and start or if today the builders will come or they won’t come, of who wants to discuss what and what we have to answer. The days of nothing are as bad as the noisy days because the uncertainty is traumatic.

The concrete dust and insulation dust are bad for Richard’s asthma, and the decision-making and constant change is bad for his tremor.

I have had to try to forget I have an Asperger’s diagnosis and chronic anxiety. Noises, smells, newness, being surrounded by people, disruption are all excruciating and I am holding on to my big internal Mamma who is telling me I can cope and I will cope and I can collapse when this is all over. Internalising isn’t great though. It gives me mystery pains and nausea. I want to explain to everyone that anxiety is the most inexplicably exhausting thing to deal with and that I can’t live normally. I have periods of insomnia, periods of sleepiness and periods of illness. I can’t say that. Instead I rock up in the space we will one day call our home and sway weirdly from exhaustion, talk less than I should, indulge in fewer social niceties than I should and struggle massively to answer questions amidst the chaos and the noise and the dust. Loud noises make me freeze until they have passed. I can feel myself underperforming and it’s absolutely bloody horrid. I can barely function. And yet I do. Simple things like having a shower and drying my hair before the electricity is turned off this morning and trying to dish out dinner from the slow cooker on a desk in the hall last night are no longer feeling like an adventure but a nightmare.

The list is being ticked off though. And that’s why I’m writing this. We need a reminder of just what we’ve done, what we’ve gone through, what we’ve achieved. I keep visualising the future and feeling impatient that we aren’t there yet, and I need to visualise the past too. Because, hell, we’ve done really well so far.

We’ve processed a life-changing diagnosis, sold a house, bought a house, dealt with the appointments, emails, phone calls and stress involved in those things. I coped with the excruciating anxiety of house viewings that only a perfectionist with crippling anxiety can comprehend. We’ve closed the business and put the building up for sale and dealt with the tirade of communications involved in that; we’ve planned massive house alterations, communicated our needs, tolerated 7 weeks of utter chaos and lack of space, lived without a kitchen, a sofa or a place to eat; we’ve kept up with Richard’s meds and appointments. We’ve put up with incompetence, planning regulations, disappointment and frustration. We have taken on board an enormous amount of heartache and processed some difficult truths too. I’m not going to pretend our lives are in any way perfect right now.

So for now we are busy being not OK. It’s perfectly reasonable that we are not OK. We know how to be okay though and are working on that.

Tick

Tick

Tick

Tick

Tick

The Power to Rearrange

Recent events have taught me many things. Importantly, though, they have taught me that the future is not just ten years away, one year away, one month away, one week away. The future is our next breath, our next step, what we’re having for dinner. Tomorrow is the future – not just sometime; not just some other time down the line.

We can’t put off what we want to do, what we need to do, and pretend there is still time.

Old age is not a certainty. A healthy old age is most definitely not a certainty for us. We (as a couple) know now that our old age – if we are lucky enough to have one – will come with some big challenges. And we don’t know which ones.

A Parkinson’s diagnosis shouts “Uncertain shit ahead!” in a way we’ve forgotten to look out for. Life is all about uncertain shit ahead for each and every one of us. We have Richard’s dopamine receptors to thank for that nudge. I find myself wanting to tell other people “Don’t wait for your nudge!” “Don’t have regrets!”

Remember how you nearly weren’t born. Remember how it was nearly a different sperm, a different egg. How lucky are you to be here?! Life is full of accidents and butterfly wings and chains of events that we can control some of and we can’t control a lot of.

Our simple existence is a random chance to spin around the sun a few times and catch a few summers that we are so bloody lucky to experience. It’s so very precious and so very short and so very precarious.

I’m a very straightforward thinker (believe it or not!)

I don’t believe in meant to be.

I don’t believe that everything happens for a reason.

I don’t believe in any greater plan, and I really really don’t believe in destiny.

I’ve seen too much senseless pain to believe any of it happened for a reason. I’ve seen too much destructive greed and excruciatingly difficult lives to believe it was meant to be.

I’ve seen paths of equally good people go such different ways I can’t believe it was fate.

I believe that life is a series of events that could have been changed if we knew, that can be changed based on our tools, and that can’t be controlled totally because of our genes and our circumstances.

I even believe our power to make the best of situations is partly ours to control and partly impossible to control simply because of our genetic makeup and past experiences.

You can choose happiness but you can’t make it choose you.

This wasn’t “meant to be”. I wasn’t meant to walk behind my husband watching his muscles waste and his right side seize up and those beautiful muscly surfer’s shoulders I fell in love with shrink. Iwasn’t meant to look forward to spending our whole lives frightened of what’s next and wondering if he’ll ever be able to hold his grandchildren when they come along. I wasn’t meant to spend every day trying not to pity a man who can no longer sign his name or write without a huge struggle. He’s in pain when he wakes and slow to get out of bed before he’s even old. How can that be some kind of plan? I wasn’t meant to lose the freedom usually brought by middle age and big kids who no longer need care 24/7 to a disease that forced us to rapidly and drastically change our lives before we were ready. Just as I don’t think our baby sister was meant to die of neuroblastoma or our father of leukaemia.

I believe in atoms and free radicals and chances and missed chances and metabolic cravings and the effects of greedy men on our lives.

I believe in power. I believe in self-power being easier to harness in some of us over others, and however much some of us want life to be better we can’t make it happen.

Being able to harness what you have is a big separator. Whatever the individual components that made me are useful tools in spotting the good in life, in making choices towards happiness, in seeing and feeling the good around me. My chances are better because the series of events that made me who I am today make me better able to choose happiness.

A house full of books, a childhood learning music, much free time for thinking, a home in a beautiful area, educated parents, some fairly untypical opportunities at a young age to be forced consider others and to realise I was lucky to be alive ????? I don’t know? Some of that? All of that? Other stuff? My biological makeup? My fussy guts? My good bacteria? My bad bacteria?

I know I have the power to be happy. I know I do and I know I’m lucky in that.

I know that’s partly because happiness chose me – and that’s not fate or destiny or meant or be. It happened for reasons. But not a reason. And this is why we can rearrange our lives and make it work and be happy. This doesn’t make us better than anyone else. It makes us lucky.

I’m sad about what’s happening to my husband but we will cope and we will find ways around it because we have the power to. But I don’t for a second think it was meant to be. Another kind of nudge would have been kinder.

MELTDOWN: “Greater Force” versus difficult 


“Meltdown” if you’re autistic is the culmination of too much coping, too much stress, too much internalising; too little opportunity for repair, too little understanding, too little time being true to one’s needs.

It’s a powerful rebellion of the inner self, of the true needs of the autistic person. It’s a reaction, a cry for help, an explosion. It’s a need for release from what’s going on now or what’s gone before. It’s an immense sensation that something must give, must break, must end. It can manifest as a strong – if not totally overpowering – need to escape. To rip a hole in this current life and run away.

There is often a sense of a Greater Force beyond our control creating havoc, making life especially difficult and of life conspiring against us.

It’s not a hissy fit. Please don’t say it is. It’s important.

What it really is is an inability to see soon enough that we’re asking too much of ourselves or that others are asking too much of us.

We might react to an immediate environmental or personal impact upon us. We might scream that life or a person is picking on us (it sure as hell feels exactly like that) but what it really is is too much expectation. Too much difficulty. Too much pain. Too much…

Like a belly so overfull it makes you vomit because there simply is no room for anymore, the only thing to do is let it all out or implode.

I see myself trying to carry too much – metaphorically and literally. I watch as I drop things, as I disappointment myself, as I hurt myself, as I become overwhelmed.
I feel a rising tide of everything pushing against me and I rarely remember to stop soon enough – or I am simply not permitted to stop soon enough.

There is no Greater Force conspiring against us.

It’s just too much. It’s too difficult.

But goodness only knows what the answer is.
Another world? Another time? Another set of rules?
Another way of thinking about difference and need?
Some kind of permission for better clarity from autistic people for autistic people and a language based on acceptance and empowerment that allows for difference to be accommodated and embraced is certainly needed; that allows for us to feel safe to say we want change, we want you to change and we want to cope on our own terms. And an end to this feeling that we were not made for this world or that we should try so very hard to not be ourselves when we and the world were very much made for each other.
It’s okay to say it’s too difficult. It’s okay to say your way is not my way. It’s okay to say I have to do a, b or c in order to survive.

But it’s not okay to be in a place of meltdown not knowing that all it was was too difficult, too unsuitable, and we should have been

allowed

to

Stop.






Autistic Woman and the Public Persona

I’m out, I’m dressed, I’m bright, I’m smiley. Eyes twinkling with mascara and positivity.

I’m active and alert, acknowledging, nodding, talking. I am efficient. I am cloaked in my efficient persona. I have rehearsed this. I will smile and I will be genuine because I am set up for this.

I’m not fake. This is me. I am real. It is not a mask or an act – but it is an effort and it is only part of me.

The other parts of me are quiet and thoughtful and closed off:

The watchful me, the imaginative me, the creative me; the me that likes to plan and plot and design and reorder and construct and renew and appreciate. The me that needs space away from others to think straight and to survive.

The recovering me, the aching, sore-bellied, groggy me; the me that pushed to make life easier for others and drove herself on adrenaline and internal pep talks and constant alertness to get things right. The me that gets ill because society doesn’t run itself for me. The me that pops beta-blockers in the night to try to cope with all the replay and self-deprecation and the panic about what’s to come and what went before.

The live-wire me, the musical, singing dancing, gardening me; the me who forgets the time, gets lost in thrills and who has a unique surge of productivity that sits so badly with the conventional work day. The me who loves what her imagination and inspiration comes up with.

I am so much that is not bad but that grates painfully up against the social order and that has its own clock.

I will fit. I do fit. I make myself fit.

And then I hide, I curl up, I crawl, I don’t speak. I think and I think and I think.

And then I lengthen and strengthen and stretch towards a life I know I can only take in bites. And boy do I bite it.

And that’s how the public persona survives. Like a symphony of contrasting movements and dynamics and all the rests in between.

Love the autistic woman’s public persona for she has worked hard to perform it for you. But love the whole of her, love the composition and the composer, the way the magic works and the how the best movements are the ones you don’t notice on the first performance.

How to Live a Life

I have been struck by crushing and excruciating exhaustion. Completely floored. I felt it coming and fought it. I shouldn’t have. Now I have to consider each move, each step, each job and each rest. I have to allow myself to surrender. 

Plans? No. None of them. Cancel everything. 

I’m never completely sure what’s going on in my body but sometimes it says “enough” and “no”, and it’s always after trying to act like a regular person, after anxiety, after peopling, after a run of events that other people would find normal but that I find consuming and often scary – or at least worrying – and that use up so much of my thinking. My life, my energy, my brain, my thought process are all geared towards what is expected of me next and I drown in a combination of planning, organising, imagining, visualising, fearing. Downtime, breaks are futile because What is Happening Next is looming on the horizon. Rest can only come when there are gaps. 

Right now I need a big gap. I need quiet, space, peace, open spaces, periods of silence, freedom to move instinctively, a break from expectations, from my own standards. I need to feel security from intrusion. And that includes unexpected noises or things breaking into my safe space.

January is a particularly difficult time after pushing myself repeatedly to be all things to everyone when I’m a person who needs long and regular periods of still and quiet and lost-in-my-head-ness. 

I know who I am and it is not this person. 

Who I am has been pushed to the side, smothered, hidden under a huge pile of “Being Normal”* 

Every wadge of “Being Normal” that is piled on top of all the others I haven’t managed to escape from yet crushes me a little more until I find I am shouting for help. Wanting escape. 

In bed, I am dreaming of intrusion, fear, expectation, of eyelids unable to open, of calling for help, of feeling trapped. 

It’s not that this world was not meant for me or me for it, it’s just that variations are so difficult to live by when they are so poorly absorbed by the latest ideals of how to live a life and my own how to live a life doesn’t suit those who rely on me. 

How much of this is anxiety? How much of this is from years of trying to fit and fighting my real self? How much of this is autism spectrum? How much of this is middle age? How much of this is a commonly-felt dose of post-Christmas, midwinter, light-deficiency tiredness? How much of this is sadness and frustration that I’m still not living the mellow, creative life I’ve always dreamed of? How much of this is ridiculous perfectionism and unattainable high standards? 
All of the above. 
There is a pill. It’s called accepting variations from the norm and absorbing them into society. 

*I use the word “normal” to suggest I and others like me are not normal. But I use it tongue in cheek. We are all human. We are not freaks of nature. Neurodiversity is about the variations within the human and is normal. 

The Eco Whisperer

img_1734

I want to be an eco-warrior and stand a-top a mound
Wave leaves and flowers like flags for the earth
And call to all around:

“Don’t kill the animals! Don’t poison the plants!
“Don’t burn trees to the ground!”
“Leave beauty where you see it.”
“Don’t covet all you’ve found.”

I want to fight for truth and hope
Teach sharing, caring ways
And show each human how wanting less will bring us better days

Let’s look past borders, let’s empower the poor
Let’s end this greedy phase
Give hope to future people
And the children that they raise

I want to change the way we teach: setting children on course for greed
Drive minds instead to long term plans
With warnings they must heed:

Give up your ego, give up your bling
Give time to thought and deed
See wealth for what it really is:
Taking more than you need.

For it is our greed that got us here:
Our desire to own and win.
Our minds must change from envy and respect
To avoiding this huge sin.

Quiet, committed thinkers
Are the role models for me
No Bransons, Trumps or Windsors
May ever come for tea

Admire the ones we’ve never heard of
Who never took a dime
Who ask for nothing in return
Though they’ve given so much time.

I’ll never be that warrior
Up high for all to see
I fear for the attention
And the conflict aimed at me
But I will heed my own message
And write for solidarity:

Power to the future
The animals
And the sea
Destroying nature is not progress
And growth?
That’s for the trees.

Perpetual Tigers

shutterstock_322463783Tiredness leapt upon me and pinned me down. “You shall neither rest nor achieve,” it growled. It had come to take advantage of a body and mind left vulnerable by Anxiety who was still watching me from the darkness, plotting and sharpening its claws. 

Fighting for their turns to tear at me; to feed from my body, their potency has grown as I have weakened. They have sucked away the vitamins and minerals I need for energy, thought and deed. Anxiety at my head, my back, my heart, my belly and my skin; Tiredness at my lungs, my muscles, my brain matter and my bones. Clawing, draining, claiming me until I fear I no longer belong to myself. 

Not vultures politely waiting for the peace of a spent body, but murderous carnivores attracted to a living being with fight and the potential to rejuvenate. Parasites slowly depleting and giving nothing in return. 

The weapons to defeat these monsters are complex and many, yet they are short-lived. They are made of paper and candy and smiles, of dreams, of songs and laughter. They can all too easily wash away in a storm. But we who have learnt how to, fold them, sing them, dream them up, write them into our lives; can conjure pictures with no monsters, and pictures where monsters are defeated. You cannot turn away from these monsters, they curl like a snake around and around but if you squeeze your eyes tight shut, balloon your chest full out with air, and hold your weapons close, you can see beyond them to all that you have that they cannot hold; all the space that they cannot fill, all the good dreams and good words. You can see sleep and a calm body. You can see paths to the light and the future. Good things are there if you can reach them.

They will come again, the monsters, they fight me still because they are part of me, within me. But I win. I will always win. Scratched, scarred, exhausted and traumatised, I always make it out alive into the light where my words and my smiles and my dreams are my own.  I own my body – even the scars. 

Ghosts

img_3545There. Right there. On that spot. We stood right there where the worst of the worst memories hung in the air, lay on the ground, and circled around. I told my little girl nothing. I teased her with taking phone photos and showed her the leavers’ photo from my year: 1986.

How many people remember the floor of their school corridor 31 years on, I wonder? How many people picture it on a regular basis? How many people had to go back years later and stand on the same spot outside the very same room. She has the same tutor room I had. You couldn’t make it up.

It took me three weeks to ask her: ‘What’s your tutor room?’
‘Room 1,’ she replied.
I’d delayed asking her as if I knew already.
I shared some brief memories but shared no pain.

We met her outside. I did jazz hands and was allowed a hug. Cheerful and chatty, we were early and hung about. So much had changed and yet so much hadn’t. The floor tiles rose up to greet me, tease me, loaded with history, with DNA, and I remembered the sounds of 1980’s shoes echoing, of voices egging on my tormentor, of books and folders slapping hard on the cold surface. I remembered her words and my reply. I remembered trying to punch her ankle and trying to shout ‘Bloody bitch!’ as she turned and left me spreadeagled amongst my belongings on the bruisingly hard floor. But my voice came out reedy and tight with self-pity or shock or from the beginnings of tears. I’m not sure which. I just remember I felt weak, ineffectual, beaten.
I didn’t cry though. I went straight into Room 1, collapsed in my usual place at the table I shared with the some of the other girls in our tutor group, and ranted a little. I was pissed off, confused and stunned.
It never happened again. She’d done it. She was pleased with herself perhaps or maybe she got into trouble for it. I never reported it, though, never complained. Maybe someone else did.

The torment didn’t stop though. The name-calling, the looks, the bitching, the drawing other girls into her campaign against me. The constant, daily chipping away at me. I was unaware that the emotional abuse was bullying too. I just knew I hated it, hated her, hated school, hated myself. I feared my every move, my every garment, too much make-up, not enough make-up, too thin, too tall, too clever, too musical? Which was it she hated the most? Who else hated me? I had my suspicions. The subtle abuse continued too: bitching loudly in groups about me so that my closest friend would come and tell me the worst. I found out I was short-sighted that year. I didn’t wear glasses but walked around in a haze and couldn’t see the teachers’ writing on the boards in class. Everything else fell apart because of how I felt about myself.
I ran a mile home for lunch every day, I stopped attending choir – although singing was my favourite thing. Teachers began to dislike me and misunderstand me. I wasn’t aware that I appeared different or difficult but they reacted to me as if I did.

I don’t think about her. Not as a person. I don’t really care about her. It’s more that I feel broken by school and those months that bruised me so badly.

Do I feel better now I’ve been back and stood on that spot again?
Yes and no.
img_3549
Yes, I’m glad my child and my husband stood grinning on those cold cold floor tiles and helped me water down my visual memories with new ones.
And, no. No because I don’t like how I feel now. I don’t like it at all.

Mascara and Alcohol: when getting away with it got too heavy. 

mascaraeyeIt was the early two thousands, maybe 2003. I was still booking things, still agreeing to things, but in recent years had gradually begun to back out of more and more plans, and increasingly clocked up more no shows; strangely grateful for a child’s sniffle or a phone call to say things had been cancelled, and yet still in denial, still making excuses, still convinced I could do everything that I wanted to do. And still convinced going out and socialising was fun, was what I wanted. The tiredness or hormones of motherhood were making me enjoy home more perhaps? Being so busy in daily life meant I’d run out of time to get ready or the energy to stay out at night, right? There were well-argued reasons for every time I chose to stay at home. I would often truly feel ill when an event was upon us and I had genuine headaches, genuine stomachs problems. It all felt like real reasons and not excuses, and so the times staying at home built up and up and up like a brick wall. And it happened so slowly and I was so good at convincing myself that it was just this once we’d cancel, just this time we’d stay home because… because… Because, after all, going out is fun. Everyone likes it. Everyone. If you don’t there’s something wrong with you. Humans are social creatures. Fun, fun, fun times…

My grandmother had suggested I was depressed when she noted my increasing insistence for staying in, staying home but I looked at what I had and I was happy with my lot. And I could always always reason my actions. Until that day, one Christmas holidays, I was sure I was making my own choices and was in complete control.

It was the Christmas period. I’d booked pantomime tickets for what was then the four of us plus my parents. Getting ready for Christmas as a whole was difficult for me, it left me in a constant state of list-making, obsessing over minutiae, sleepless nights and panic, and the extra socialising completely drained me. I had to drink a lot to cope with anything social. I thought it was the same for everyone but I was chaotic for weeks, and every moment was taken with pinning down my panic and attempting to appear organised. I did appear organised but appearing organised was actually all I managed. It was a performance so convincing I managed to carry it off for years. I once admitted to being shy to a friend and she laughed and said “You’re not shy!” I really had pulled it off! So I just kept turning up for things and drinking and talking crap. I remember telling one of my Open University tutors that I got through Christmas on mascara and alcohol, and she told me I should write a book called Mascara and Alcohol. Maybe I will.

As our children were still young, I’d booked matinee tickets for the panto. Already in a flappy state (I didn’t know I had anxiety. I wasn’t even kind enough to give myself the gift of a label those days. All I knew was that things made me flap, made me worry, made me stressful. I got stressed. I stressed out), I found myself getting hotter, trembling, focussing on negatives about my appearance, obsessing about a pimple, unable to draw that line that said “finished getting ready” and walk out of the bedroom, downstairs, to the front door. I’d got the children ready, given my parents a picking up time, my husband was downstairs ready and waiting to start the car. I’d organised every thing and every one but I was Not Ready. I would never be ready. I couldn’t complete getting ready because that would mean leaving the house and I was trapped inside a forcefield that was insisting I stay home.

I’d met that forcefield before. Once as a teenager when cycling to a holiday job I cycled into the forcefield and it span me around and I found myself heading home again. At the age of five I refused to leave the house and go to ballet lessons because I knew I simply couldn’t go. I loved ballet but I never went again. I danced alone at home instead. Forcefields existed around doors and I couldn’t walk into certain rooms or areas at school.

But all these years later I still wasn’t joining the dots and putting together the picture of someone who physically and mentally couldn’t socialise regularly.

Upset, my family went to the Panto without me. Upset, I stayed home alone. I was relieved and comforted by the escape but incredibly upset.

What had gone wrong?

I’d done what I always do when going anywhere: I’d been in control of planning everything, I’d chosen in advance what I would wear, I’d pictured us there, I’d placed myself in amongst many people, imagined the claustrophobic crush in the entrance, pictured sitting under pre-performance lights, pictured people sitting all around us, imagined being spotted by people we knew, people we half-knew, people I couldn’t remember because (as I now know) I have a degree of face-blindness, imagined what I would say to people, realised I didn’t know what I would say, and knew deep down that I wasn’t going to cope – some other time, yes but not this time. But it was deep, deep down and I wasn’t really sure what was controlling my actions. My subliminal knowledge that I’m not coping or that I won’t cope often simmers away in the background until I meet that damned forcefield, and WHAM! – can’t do this. This one event in itself was not a big thing but everything else had circled around and around until I felt that just doing this one thing was like entering a black hole.

That day was a biggie for me. I’d let a lot of people down. And I haven’t been able to trust myself since. Other people in my life no longer want to take the risk with me either and I’m rarely invited to anything. I’m not entirely sure what I want to risk committing myself to anyway. My husband will never plan surprises for me because he too doesn’t trust me. This is not necessarily a bad thing because he’s not a fan of too much socialising anyway, and I think his habit of being a grumpy, unsociable git at times is what attracted me to him!

So these days what I want to do and what I’m able to do sometimes overlap beautifully like a Venn diagram, and sometimes they stay firmly separated in their big old lonely circles. Often I will put myself through what is uncomfortable because it’s probably what’s best, other times I will actively seek out peace. Lying awake at night after an event (sometimes for weeks or years afterwards) and remembering how you cocked everything up is no reward for pushing yourself through something. It’s hell and it’s not worth the pain of clocking up yet another bad experience, yet another disaster. So instead it’s a lifelong project of daily self-assessments now. This self-awareness has given me a more joined-up picture of someone who has to carefully measure and weigh up what’s going on, what’s necessary and what’s doable on a daily – sometimes hourly basis. I have to give myself permission to make plans for fun things but I also have to be able to admit that not doing something is also okay and sometimes crucial. And I have found comfort and beauty in just being and not always seeking outside experiences. I do like time at home. I like it a lot. It’s not just something that I have had to force upon myself. It’s often something I have to fight for.

At a wedding a few years ago, I was struggling to cope and someone next to me was involving me in conversation. After a while of getting limited response from me she turned to her companion and muttered something about “…so rude…”. I’m not rude. I spend my whole life adjusting myself to people and situations in order to not be rude. It’s exhausting. Why push yourself through things if you’re so overwhelmed you’re just going to appear rude? Humans are complex beings (no shit) and we can respond very differently to different situations, and there’s nothing quite like feeling trapped in situations that other people clearly find fun and enjoyable.
There’s something about socialising less that makes you look like you’re coping less. But I’m not coping less these days; I’m just coping differently.

All Change 

I’m picking up her last-day-of-the-summer-holiday clothes from the bathroom floor. Greyed with fun and carelessly crumpled. Today she is wearing her brand new crumple-free uniform for the start of a new term at a new school. From oldest in a primary school to youngest in a secondary school. The stress and expense of the new uniform has plagued our lives for weeks. 

The anxiety and excitement of so much change kept her awake most of the night. Fuelled by adrenalin, her eyes shone as she said goodbye to me, keen to leave, to see her friends and share this first day with those who would understand. We, after all are not going though this as she is…. Little does she know…  I am sad and nervous and proud. This morning she had to get up and be out of the house a good 3-4 hours earlier than she’s been stirring on holiday days. Throughout this coming week there will be belly ache and a sore throat and we, her parents, will suffer the brunt of her tiredness in her efforts to cope. 

I am grateful for mobile phones and social media and all the messages passed between jittery friends in the last couple of days: “Are you wearing short or long sleeves?” “Are you getting a locker?” “Do we need our PE kit?” “Are you wearing socks or tights?” And last night: “I can’t sleep either. I’m too nervous.” This morning a phone call from someone keen to have a companion to catch the bus with. A huge thing to have to travel to school by bus for the first time after years of a five-minute walk. 

There is no doubt secondary school will change her. In what ways I can only guess for now. There is no guarantee she will be happy or unscathed, there is no certainty of anything other than this knowledge that change starts in a big way today and she will have to change to cope, and I’m not sure I’m ready for it. 

%d bloggers like this: