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Posts tagged ‘Life’

Family. Familiar. Familiarity.

I’ve fished out my long pyjamas with the hare design: the familiarity is comforting, as is the super soft cotton.

Familiar habits and familiar objects reduce stress and provide immense comfort. I know I am not alone in this.

This isn’t just an autistic thing, it’s a human thing. (I do believe it’s likely to be more important to many autistic people though because the stress of processing a tonne of unfamiliar stuff is exhausting, and so something so totally familiar that one’s brain can take a rest is important.)

Ever since we went through the stress and upheaval of moving in June, the return of each familiar ritual, each familiar knick-knack, and each familiar kitchen item has brought massive comfort to us all. Last night we hung our old kitchen clock on the wall and it told me it was time to breathe. People keep coming back to fiddle with things like the electrics and patio windows and straighten things over the last couple of weeks, and there’s a small hole to fill outside and a new front door is on its way, and we’re expecting bedroom carpets on Friday so we’re madly trying to get ready for that but mostly we’re filling the space in a living rather than surviving kind of way and can keep popping back to our hired garage to fetch a cooking pot or glasses and other things that signal functioning domesticity and familiarity.

We’ve all longed to bring back things and bring back our ways. All of us. Home is about what you do and with whom you do it. Peace is an end to conflict, distress and disorder. So things that can bring back a semblance of a more settled past reduce trauma.

We have been traumatised, disorganised and unsettled. 2018 has, so far, shattered and scattered us – not scattered from each other but from ourselves and from our normality. The expression “my head is all over the place” has never been so apt.

On Friday 8th June we left our clean, bright former home with a huge bank of memories. As I dusted the last skirting board Rich got the call to say the house was no longer ours. This was the only home our youngest child remembered and where she grew from toddler to teenager. It was the home where I passed my degree, published a book, found peace, space and confidence to write and expand my knowledge and gained a little self-love and learned how absorbing myself in peaceful creativity was all I needed to fix my turmoil; where I learned blow-by-blow of my father’s terrible illness and death, then of my son’s terrifying head injury; where we put up family and guests over the years, and watched our eldest leave home and our middle child go from primary school to secondary school to college, to first car to second car to 21st birthday.

It’s where we took our eldest back in while she rebuilt her life and set up her own business.

It’s the last place I sat and had a cup of tea and a chat with my darling father.

It’s where my husband heard that his beloved father had died; where we went from young to middle aged and grey. It’s where we stood and listened to the neurologist give us the news we had begun to suspect about Richard over the phone. I can still picture each room I was in when each life changing phone call came in, and June of 2008 when I paced up and down on the patio, walkabout landline pressed to my ear, listening to bad news and more bad news as the most beautiful time of year took hold around me while horrors of our father’s leukaemia, treatment and pain poured into my ear is a memory of roses and footsteps, long evenings and sick fear.

When we first moved to that home, no one even owned an iPhone yet, Brexit would have seemed impossible, Prime Minister May highly unlikely and President Trump an absolutely incredible joke. No chance.

Pinochet and James Brown and Saddam Hussein were all still alive. Our mothers were still married women and not widows.

We’d created a flow and a rhythm and could get on with our lives because we weren’t distracted or disoriented by the unfamiliar.

There is something incredibly heartbreaking about taking a big old map of familiarity and cutting it up into small pieces in order to move house or initiate change. It is stonkingly painful and unnerving. It is particularly so when life is difficult and upsetting and you need that comfort.

When we walked through the front door as the new owners of Number 21 in June this year, it felt anything but ours. Someone had been a fan of fried food and fatty meats over the years in that house. Someone had been a smoker over the years. Someone had been abroad and been inspired by paint colours that better suited the Caribbean. The banister was sticky, the cooker was broken and filthy and stank of old, burnt animal fat that made me gag, the garden was no longer a garden but a hotchpotch of grey gravel, red and black brick, rubble and unusable outbuildings painted primary blue. The upstairs was a chaotic tumult of mismatched carpets, and the downstairs a cacophony of cheap laminate floor that cracked irritatingly under each step. It had looked okay when we’d viewed it but the harsh reality was that it needed tonnes of work doing.

No one seemed to have had a vague care about who would be entering that house once they left and our hands met grease and dirt on many a surface. Our youngest even woke to find old toe nail clippings on the floor on the first morning.

The impregnated memories of previous residents and thoughts of impending building work, combined with the exhaustion of selling up, downsizing and moving, on top of a Parkinson’s diagnosis and preparations for closing down and selling of a family business left us in what I have now come to recognise as Coping Mode. We simply talked practicalities, and monitored and recorded progress in order to survive. There was no way we could afford ourselves the luxury, at this stage, of discussing just how awful it was surviving in a small, foreign space surrounded by unfamiliarity, dirt, dust, noise, and other people’s, often offensive, smells.

The building contractor who followed our requests, organised the work, and hired all the subcontractors for all the jobs we wanted doing called our renovation project “A Challenge Anneka” (you’ll have to be British and over 30 years old to have any clue what that means…) but we felt supremely challenged ourselves.

I hate chaos, clutter and dirt so much it makes me squirm. I went to bed many a night with the windows wide open trying to ignore the taste and sensation of concrete dust and plaster dust in my mouth and nose. My senses are ridiculously highly tuned, and foreign objects – however tiny – scream at me. Life is a constant battle of trying to quieten or ignore those screaming senses at the best of times, but this was extreme. Foreign sights, foreign sounds, foreign smells, foreign tastes, and foreign sensations all around me began to drive me mad. And all the time my natural desire for cleanliness and a clutter free home so that my poor over-busy mind could rest and stop processing every damn detail, was being monumentally challenged.

Richard needs to eat regular, healthy meals, he needs to rest and recover from the extra exertion simply having Parkinson’s uses up and he needs to exercise regularly to keep his dopamine circulating. He needs to remember to take the right drugs and the right supplements at the right times. Just like me, he needs peace and periods of time when no one is asking questions or creating extra work or upheaval. We both began to find it difficult to attend to each other’s needs as we concentrated on our own survival. But somehow we did the bare minimum and we have survived.

Fortunately, despite being a much more built up area, the small strip of no-mans land between us and the modern houses behind our garden, the nearby river and the nearby Great Field mean that we haven’t lost bird song. The crows, seagulls, starlings, sparrows and pigeons are all here, and at night, when all is quiet and I feel I am the only person left in the world, I can hear a tawny owl couple communicating to each other.

I am learning the new soundtrack to my life, and learning to accept – if not quite filter out – all the new stuff. We haven’t quite created the right rhythm yet but at least it’s no longer a rhythm-free filthy chaos of unknown beats and crashes.

I think I will be traumatised by 2018 for some time. It will take me a long time to put the upset far enough back to live with it. I’ve come to recognise in myself how trauma doesn’t want to fade but wants to keep upsetting me and causing me ongoing pain. But exploring your own neurology can make you beautifully self-aware and able to accept moments of failure as human and just part of life.

I coped. I had mini failures and I will continue to. But I coped. We coped. And this too will fade into birdsong. Eventually.

We are not OK and that’s OK

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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.

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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.

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.

Regular but Fizzier with Extra Lemons

Always the juxtaposition of being human and feeling regular human feelings along with atypical reactions to some aspects of life is uncomfortable to accommodate when I need to talk about feelings and about coping. 

Autism is still discussed as a fault; certain things are lacking – apparently… But I’m not lacking. I’ve got everything I need to be a fully-functioning human being. 

I’m not broken. I’m not wrong. I’m not so very different but I do have different needs. I am always truly heartbroken if I pick up any hint whatsoever that I may not be perceived as completely capable, trustworthy or approachable. 

True, some things trigger problematic feelings, some things take extra energy. Some things cause ill health or anxiety. Some spaces, time-scales or expectations are too tight. The choices for how to behave and when and where are too limited for me. That doesn’t make me lacking; that makes society lacking.

I am safe, I am competent, I know how to put my children first. I know what’s important, what’s fair and how to accommodate my needs around those things. I trust my instincts and I inform myself to back those up. I doubt myself hugely on a minute-by-minute basis and make sure I am getting things better as I go along. The combination of autism and others’ perceptions of what autism might cause me to fail at means I am super-vigilant. I don’t want anyone using this against me. 

I feel perhaps in the same way that our nerve endings are right at the end of our finger tips and everything we touch gives us information, that all my experiences and my emotions are on the surface too; out there, on my skin. My joy, my pain, all my senses, the heat, the cold, the tightness of a space, the pace of life, the expectations of that’s-just-how-it-is, it’s all fizzing with messages going to and from my brain with immediacy and honesty. I’m not packing away mini reactions and mini experiences throughout the day, I’m indulging in great big panoramic gasps of life all the time. Everything is fingertips on a pinhead or sandpaper or silk or kitten’s fur or ice or a burning stove. It’s a series of wonderful and not so wonderful sensations asking for my reaction. 

And yet I must often swallow those great gulps of daily life experience, I mute the “Ouch!”s and the “Slow down!”s, the “OOOH!”s and the “Aah”s and I internalise them. I sit politely pretending to listen to someone talk, all the while wondering what the hell is going off in my peripheral vision, and then I am left with huge great big full stops. I haven’t reacted enough. I haven’t dealt with all this. I lie awake at night, overstimulated, processing everything. 

I am very fizzy. I’m bubbling all the time. The way society runs itself is really rather like someone adding a spoon to an already effervescent world and stirring fast. So I regularly and sensibly give myself a break from that great big stiry thing.

I don’t see it as a bad way to be, I certainly do not see myself as abnormal. I’m human just like everyone else. I’m just extremely  human. 

And because I’m extremely human I am extremely honest. Ironically, despite the superhero clamping down on myself I do, I actually have a greater need to react with immediacy to everything going on. I want to vocalise each emotion as each experience plays out. I want to dance, to sing, to shout, I want to echo sounds that move me, I want to enthuse like an emotive wine-taster: “I’m getting lemon zest beside an ocean!” It’s all so zingy. 

The written word makes me feel safe. My counsellor is a querty keyboard; patiently waiting for me to form the words, to tell her how I feel. So I write it. I write moments of joy, flashes of anger, hours of pain, I spill, I edit, I too hear what I say and feel purged. This honesty, this purging, this sharing shows a side of me hidden from daily life in the physical world. I know how it looks to write pain on a page. I know how it can diminish you in the eyes of some. But it’s just honesty. And it feels better for saying it, making sense of it, it feels good to be honest, to pssshhhhh out a little of the carbon dioxide that makes me fizz. Life is all about feeling and sharing. 

I’m not entirely sure where I was going with this but I feel better for saying it! 😀

Could Neurodiversity Be Making Me Ill?

I’ve suffered all my life with intermittent and tricky to explain (so I don’t bother explaining) not-quite-right-ness:

Strange pains and feeling like my blood is pooling in my legs when standing.

Sharp stomach pains and exhaustion.

Sporadic aching somewhere, somehow and not knowing why.

Dizziness.

Reactions to foods, and then no reaction to the same food another time.

Feeling ill when sitting too long.

Restless legs and trouble getting comfortable or sitting still.

Wide awake when I should be tired.

Floored by exhaustion when I should be energetic.

A strange feeling – with inner ear sound effects – that at the back of my head the top of my spine is made of popping candy and if I look up I will pass out.

Fuzzy, whooshy ears.

An inability to hold my arms in the air for too long when hanging out washing.

Bashing into things.

Tripping over my own feet

Trouble with balance and co-ordination.

Vertigo without heights.

 

But all this fluctuates and there is also:

Great physical strength.

Muscles which on certain days can power up the steepest of hills.

A tremendous sense of balance, and an ability to hold substantially awkward yoga positions.

A stretchy and flexible body.

The posture of a dancer or a horse rider.

When I am well I am very, very well. I can fit a lot into one day.

I can garden like a machine

I can cycle after months of not cycling and have power in my muscles.

I can walk for miles with ease.

I can run up and down stairs several times in one day and wash and dry many loads of washing, change beds, clean the kitchen, vacuum, carry heavy shopping.

I don’t feel weak or tired or over-exerted. I just feel well, and plan energetically for several days ahead based on this current exuberance.
And then a bad day follows the good days and my head feels 2 pounds heavier, like it’s putting strain on my neck. My eyeballs ache. Everything I’m supposed to do feels like a monumental climb with heavy legs and brain fog. My memory is poor, and I’m not even clear what my intentions are. My thoughts don’t flow. My energy is gone. And I’m floored again, ditching my plans, needing to lie down and yet not wanting to lie down. Weak, shaking, losing hours. Hands trembling. Frightened of food. Wondering who the idiot was who made so many plans for me that I can’t possibly carry out… Aching. Uncomfortable. Not quite right. Totally frustrated by an unpredictable body.

 

I’ve always been like this. Completely unable to plan anything long term and unable to know what I will be capable of. Nothing specific, nothing serious, nothing long-term enough to see a doctor (apart from the exhaustion but that lead nowhere). And I’ve mostly been fairly quiet about it. Until now. I’m starting to read more and more about how autism and Asperger’s can co-occur with hypermobility problems, connective tissue disorders and Ehlers Danlos Syndrome. It’s early days for me only a little over 2 years into my diagnosis, and I still struggle to find enough information about the physical effects of my condition.

But I can believe myself now – about my not-quite-right-ness. It’s still a bit of a mystery but it’s a very real one.

A Project, Not a Day 

“I love you. I haven’t written your card yet and I haven’t bought you a present but I do love you,” I said as he left my vitamins next to my cups of tea and walked away. I need 3 cups of tea and magnesium and vitamin B supplements to get me out of bed these days.
“Good,” he answered with much weight for only one word, and closed the door behind him. He’s unwell today and we’re not planning any conventional celebration. I have painted my nails though and am working out how to cook a special meal with no oven.

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2016’s Anniversary flowers

22 years ago today: exhausted, nauseous and anxious, carrying a modest cream roses and freesia bouquet, and wearing a sale dress, I took his name and we committed to one another. I didn’t need to take his name – I had my own name but I wanted ours to be the same name and to have a family all sharing this name. In the years since I’ve thought about all the women’s own names that have been cast aside for marriage and how my own surname was not my mother’s or grandmother’s or great-grandmother’s. But their names all came from men too, and it seems to be one of the last remaining vestiges of patriarchy. Besides you’d have to go a significantly long way back in history to find a name that didn’t come from a man, and that wasn’t a topic up for discussion when I was 24 and in love.

The beginnings of tiny baby Gemma were growing inside me and I wanted us to all share a name by the time she was born. So 22 years ago I went along with tradition without question. (And being pregnant before marriage was part of my family’s tradition!)

Our relationship was over 5 years old by then, we’d lived together for nearly 3 years and we’d been engaged for 2 of those but we’d never planned a wedding. We both found it daunting for our own reasons.
In the end it was a small, inexpensive registry office wedding with no time to do anything lavish and not enough time to overthink or over-plan as I am prone to do. I’m still glad we did it that way and, knowing myself a lot better these days, I’m quite sure it was the right thing to do.
On our anniversary each year I think only very briefly of the day – it served a purpose and an important one to me but I think mostly about the years, the numbers, the clocking up of shared experiences. I think about what’s changed through our commitment and through time, about what’s been gained and who has been lost. Somewhere there is a group photo of our wedding day. It’s stuck in a box. (We didn’t have a photographer but our tiny group of family and friends brought their own cameras – and they were a talented, artistic bunch!). But I like our relationship today so much better than the one we had then and I’d rather live in the present.

It may seem an awful thing to say but I wanted to get the wedding out of the way. I just wanted to be married and get on with being married. By the evening I was not enjoying myself at all, was completely knackered and had run out of the ability to make conversation. Big events and big, long days are not for me.

But the big, long years are for me. The learning, the shared mistakes, the getting things right through error, argument and experience, the way a relationship balances over time. Boy, we’ve made some awful cock-ups – and we will continue to make new ones but I do believe we’re getting more right than we are wrong and for me this means that being older and deep in a love is a lot more comfortable than being young and in love. I am never certain of anyone’s feelings for me. I am forever afraid of losing people and often won’t work at friendships for fear of failure or rejection. But this has been one relationship I was prepared to risk all for and really work at it. We have both perfected The Right Royal Pain in the Arse, and have a most nasty, mean, thoughtless side which we save only for each other.

Result.

I didn’t expect much from our wedding day, I certainly don’t expect much from today. What I have is a certainty that through joy and pain and suffering and general life shit, I have loved someone for 27 years and somehow he has committed to me for 22 years and shown me that he loves me back and my own commitment has been repaid. So I love anniversaries and I love that we both survived another year. Each passing year that slowly becomes less and less certain through age and ill health becomes more of a celebration. I never took any of this for granted and I never will.

Throwing your whole being into one relationship isn’t for everyone but it is for me.
And commemorating the overlooked numbers like 22, and not just the rounded ones, is important too.
I am a project girl. And project family and project relationship have been two of my absolute favourites.

Happy 22nd Anniversary to me and him. And thank you, Richard, for yet another beautiful bouquet of flowers.

Pulse

No more BBC news.
No more cheap, fizzy booze
No more trolley-bumping blues
No more bargain-mad queues

The TV is off
There’s washing to be done
I have tea
I have Bach (The iPod is on)

Guitar strings plucked crisply
A fugue in my head
Preludes my anxious mind
For calm instead.

Overpowering the beat
Of a cortisol heart
Softening my movements
Challenging my part

Intricate simplicity
Demanding yet giving
Slowing my thoughts
Music for living

A tune from the past
Confident and kind
Playing memories, plucking heart strings
Time in other times

That moment in this moment
That past living here
Creating a space
A pause in the fear

To listen, to feel
Tempos setting the pace
Tranquilised neuroses
Finding my place

Tea and pills

IMG_2599I’m a real advocate of allowing people to be honest about the negative stuff in their lives. I’m a believer in recognising the balance between wonderful and crappy.
Unfortunately I often pick up a strong hint from people that, unless one’s life is truly truly monumentally crappy, we’re supposed to think positively even when we don’t feel like it and bound around joyfully saying only nice things and never complaining.
‘But look at those people worse off than ourselves who never complain!’

Bugger off.

Even when I’m feeling low, I can list the good stuff! I know what it is! I don’t need annoyingly cheerful people prodding me with their happy finger, or miserable bastards telling me I don’t have the right to complain.

I’m massively, massively exhausted today. And I have had to take a combination of painkillers so I can get through some bad period pains. And I fully intend to not be joyful or to waste any energy pretending otherwise like some irritating fluffball of false cheerfulness. I will still be naturally delighted by a butterfly or a new flower or my children’s senses of humour.

I have pulled out all the stops for my family recently. I’m not complaining about that. I have no regrets. But, despite a certainty that could I do it all again I would, I can’t hide the exhaustion. I can’t pretend it’s not there. I suppose you might say I’ve refused to “think Aspie” in the last couple of days or think about the needs that involves. And now Aspie and hormones are both here to remind me I can’t ignore either for long. All I want to do is curl up somewhere dark and quiet for a day and sleep and think and empty my brain of all the recent interactions and images that are playing over and over. (And maybe have someone bring me tea and Voltarol and chocolate occasionally…) But I can’t because I have to be Alpha Dog, Alpha Bitch and chief doer of the everythings for 2 weeks now to get us through the rest of the holiday. As much as I can organise timetables for our shop and organise time for the family and organise times a journey will take us and organise and organise and organise… I can’t organise exhaustion and I can’t organise energy. These days just happen to me.

I know that many people see time at home with the kids as time off but I see it as my job – particularly when I’m the only parent here because the only time I get time off is when my husband is contributing and easing the constant to-do list, and “what does everyone need from me?” tune that plays forever in my head – and it has to be him rather than anyone else because our responsibilities are joint so it’s not help – it’s our lives, and he’s the only one I don’t have to explain to. (To be honest, I’ve always failed to see how my life of washing, washing up, preparing meals, tidying, cleaning, vacuuming, wiping poo off toilets, restocking the fridge, picking up dog hair, tripping over miscellaneous gubbins, repeatedly tidying the kitchen, stopping regulalry to say ‘Oi! Pick that up’, ‘Stop that!’, ‘Clean that up!’ ‘Wash your hands’, desperately trying to find time to pay bills, answer emails, do the wages, get outside and grow and pick vegetables, walk the dog, drink cold tea, never getting an authorised break, working through period pains, feeling guilty if I sit down, and never getting paid for any of it for twenty years, is like a holiday to some people. I’m clearly doing it wrong. Or maybe it’s the not getting paid bit…? )

Brains that never switch off need calming by reducing the stimuli sometimes – otherwise there’s no such thing as time off. I’ve pushed other people’s needs to the front of my brain for 20 years – 25, if you count the years I forced myself to socialise as much as I thought I should, and I think the not emptying often enough has finally worn me out. Some days the only thing that anyone can do for me is leave me alone ( – it’s taken 44 years and an Asperger’s assessment to learn to say that and it still feels totally evil).

I don’t need advice or solutions, I just need to grump. I actually don’t think there is a solution.
I know the best thing I can do today is write things down instead of letting them whirl in my brain, find something nice for our youngest to do, so I can ease the constant guilt, and aim for a rest sometime this afternoon by suggesting a DVD later. It won’t solve anything but it might keep things from getting any worse.

I don’t want to not have what I have, I don’t want to not have my children. I don’t even want someone else offering me anything. Dealing with communicating or organising with another person when I feel like this makes my head spin and exhausts me further. I just need to complain before I get up off my arse and carry on!

I am wading through treacle today but the treacle-wading boots fit only me. If you want to wave and offer a supportive glance as you run past me wading at 2 metres per hour then please do but don’t offer to discuss how I might do this any better/faster/more efficiently, and don’t ask me to explain why I should dare to suppose that my apparently charmed life is so difficult sometimes.
It just is, Dear Reader. It just is.

Rivers, chasms, rocks and balls

shutterstock_152045750There are many days when I feel life is a combat; a clash: it’s about all problematic differences and inexorable imperfections. I don’t go looking for them – they go looking for me. These differences come and get me, bash into my safe world and make it unsafe. I don’t want it but there’s an adversarial edge about me. What I actually want and what I feel I am really looking for are similarities and sameness for comfort. But on days like these there’s a sense that my difference and my way of looking at life is a chasm, a great, hulking, massive mile-wide fissure between me and everyone else. I’m desperate and separate, and longing for the most familiar and recognisable people and beliefs so that I may latch onto something secure. I feel a need to be fully understood and yet I am aware that that is not possible, and it’s so tremendously heartbreakingly painful. People I know let me down by not being exactly as I need them to be and not saying exactly what matches my thinking. I need them to fit – and of course they can’t (and why should they?).

When I look back on days where I’ve felt this way, the me from the outside – the me who has made it through and has shrunk the chasm, feels so protective of the me who was crying for help and clambering over rocks on the other side. I want to tell that me how well she’s doing, how she must hang on, and how of course the fight is as big as it seems but that fight is not necessarily always with other people – it is with the chasm. I wish I could reach out and help her up and over and out of her distress.

But there’s a sense on days like those that rejecting people would be easier. Just let go of everyone and fall/fly/run – depending on my mood, and be free of contention. People are contrary, oppositional, and cause conflict. I don’t want the conflict of contradiction or unexpected words. It makes me feel unsafe. I want to be offered a hand, but would I take it? Would I trust it?

This is autism. This is how the part of autism that cannot cope with change, unfamiliarity and difference manifests in me. It’s not about prejudice or discrimination in the way a person with racism or hatred would see difference. It’s more about familiar thinking and familiar behaviours, similar likes and dislikes, similar needs and similar struggles. And it’s about feeling that people are doing and saying unnecessary things and adding to my distress. People simply seem more cruel and less warm. My ingenuous detector becomes highly discerning and there is very little I am able to trust. It’s similar to childlike intense distress at not being fully understood and knowing the adult brain can’t see what you are seeing. But it’s a grown-up, dark distress that can only deepen with the realisation that outsiders are unable to validate or comprehend your distress. I can feel as different from other white, forty-something western women with homes and children as it is possible to feel if they are not looking at the world in a similar way to me. And while I’m being so apparently oh so the same as everyone else the river of difference keeps flowing, wide and fast and keeping me separate.

Then when the time has passed and the difference waters are calm, I am calmer too. I feel guilty and am quite awkward about being so at odds with so much of the world. I see how I was irreconcilable and possibly inconsolable. I want to love and be loved and mend fences. I am filled with intense amicability. And yet I am full of fear for when it will happen again and doubts about who will hang on through another earthquake.

What I am trying to fathom out now I am over the latest chasm is whether these chasm days are necessary? Whether, like autism meltdowns, they are an obligatory release and rest from social play? Does all the fitting and understanding and placating take its toll on the autistic brain so much so that we need compulsory rejection days? Is modern life insisting that we continue to socialise, and function on a constantly communicative level when really what we need is to retreat? Is my brain marking out all these differences as oversized predicaments to get me to withdraw?

If there’s one thing I’ve learnt in the past few months it’s that I must withdraw and I mustn’t fight that need to get lost in the wilderness. Other people’s everyday social behaviour is like a tennis match to me. I have to remember to get out at intervals and stop letting the balls hit my head because it ruins it for them and it hurts me.
It’s a lonely place over the chasm, and the urge to curl up and weep is huge but as the world becomes noisier and less and less private the opportunities to do just that become fewer, and rather than wish I didn’t have to go there I fear for the times when I – and those like me may find we can’t escape for our solitary climb in our mind or in our own backyard.

Today the differences are not looking for me and I am not stumbling over rocks. I am not caught in a tennis match. I feel my heart is huge and the chasm is small. I am appreciating a view from my always slightly different angle on the world. I am not looking for people to only say things that make me feel safe, but I think I appreciate this feeling all the more for knowing so well what it’s like to be ripping my nails out trying to hang on.

I think autistic people want and need their right to position themselves where they want in the world, to look on the world with a knowledge of difference and to have that view validated, but we also need the offer of a hand up when we think we are slipping.



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