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Posts from the ‘Writing’ Category

Persevering With Autism Advocacy

Sometimes I feel like giving up.

On autism I mean.

Sometimes I feel like going back in time and not getting an assessment and not having this thing (which isn’t actually a thing at all but people think it’s a thing) that others think they can use against me.

In fact I feel I have given up a bit.

I wanted to be an autism advocate. And I’m not succeeding.

I wanted to say “You’ve got us all wrong.”
I wanted to say “Look if I can get an expert to say I have Aspergers – and look at me with my empathy and motherliness and clean washing and good hygiene and life-loving spirit and GSOH and no outward physical signs- then maybe it’s a lot more complicated and misunderstood than you thought!”
But I noticed that suddenly everyone was talking to me about autism in an ugly way. As if it couldn’t hurt me. They hadn’t changed their views about autism, no, weirdly they changed their views about me. I am still surprised daily at this. How did I somehow change?
I noticed people began to assume I was the unreasonable one in an argument when before they wouldn’t have been so quick to judge. People changed what they thought I could understand or was capable of. What the actual fuck?!

I felt no longer equal. I felt I became an alien.

I also felt that people who might perhaps themselves be autistic were afraid, and instead of thinking “Well if Rachel’s okay and not ashamed then maybe I should look into my own neurology because it’s clearly nothing to be afraid of” they were actually happier putting me into a box with a label and remembering what they’d read about this bad thing (that’s not actually a thing or bad) and not who I actually was. Or who they were. Worryingly I don’t think people realise they are being so derogatory or that it matters.

I’m still, quite frankly, gobsmacked at the things kind, loving people say about autistic people. I’m still stunned into silence on a daily basis at the categorising and the language used by otherwise caring, sweet people who have drawn a line they know they shouldn’t cross concerning what they shouldn’t say or assume for fear of offence and yet somehow autism slipped over and they can say offensive things about autism. I am offended daily. Properly hurt.

I feel I’ve been repeating myself for over four years and not getting heard.

I know one person, ONE PERSON, who admits they fit into most of the stereotypes about autism (Hello if you’re reading this!) The rest of those I know don’t think they do, and I don’t think they do either. And even then no one fits ALL the stereotypes. It isn’t possible. None of us are the same. I thought I’d made that clear but it’s not getting through. We didn’t come off a conveyor belt. But even those who do come closer to the old, offensive text book descriptions deserve better language, better respect and space for them to tell you how it is – not the other way round.

“Autistic people do …”
“Autistic people can’t do …”

Stop it.

Autism is part of a person’s personality, part of a whole. If you take away autism you leave a shell, a zombie. When you insult autism, you insult a human being. Being autistic isn’t about being plugged into a list of disorders from a nasty book that are external to a better self. You can’t unplug us and cure us. It’s about a plethora of nuances that make the person you love the person you love.

You non-auties – I don’t want to remove your insane love of gravy or your passion for sport or your habit of slinging your coat over the banister when you walk in the door or that little whistling thing you do when you’re nervous. And the things that society does that make things difficult for you? I want society to adapt, not you. And when you’re not coping with a situation I want to take you out of that situation not insist you try harder. I don’t want to unplug your nuances that are unique to you.

There’s nothing we ALL do. Nothing. Not one thing. There’s nothing we all can’t do either. Nothing. Not one thing. (Well apart from all the things that are in fact impossible.)

I feel like going back in time, sitting in a room with my psychologist and this time laughing and joking and asking her about her family and not helping her at all.
I feel like making direct eye contact and smiling and keeping my hands still (I can do this for hours if I need to) and choosing different stories from my childhood this time. I can do what all the undiagnosed autistics do. Reject. Pretend. Deny. Retain the privilege to offend.

I feel like waiting for my assessor to deliver her opinion that I may have a few traits but it’s probably just anxiety and that I am in fact not autistic.
Because I could do that. I could.
(Apart from the going back in time thing.)

But I won’t deny. I will continue with my solidarity. I will continue to hope respect will improve considerably. I will continue to hope everyone will catch up. I will continue to be more patient, understanding and forgiving than people will ever realise because they’re too busy looking through the wrong lens to notice how often I am forgiving them.

On Hold

The last 8 months, since Richard’s brain scan — The diagnosis, the move, the change of identities, the stress of dealing with so many interactions, the life with no home — have been about endurance, tolerance and patience, and hoping we would meet at the other end of this current ordeal as much in love with each other and with life as before.

I believe we’ve achieved that. And some.

It’s been a gruelling first step in our new life, and a step that had to be built before the other steps could materialise.

I think about our old life often, and about how holding off would merely have delayed change and made it more difficult.

This has been a tough time but it would have been so much worse if we’d held out until circumstances with Parkinson’s problems dictated and then tried to build a new life with less strength and ability.

We’ve been aided by a glorious summer and can’t bear to think how we would have managed to live on a building site for so long had it been a typical, wet British summer or if we’d tried to do this after the disease had progressed further.

Just clearing out decades of clutter and crap was emotionally and physically draining. Not something you’d want to do with limited faculties.

And there were some days when we had nowhere to hide and nowhere to rest.

Initially we approached the few months of eating out and TV dinners in our room and enforced walks to get ourselves and the dogs out of the way, and of every day holding something different and challenging as a holiday and an adventure. We didn’t say it was going to be awful, we didn’t say we would struggle, we didn’t instantly fall into anxiety and despair. Being realistic about a struggle helps you plan ahead and create coping strategies.

But all the attitude and willpower in the world can’t fight the other stuff. We stopped eating out in late July and didn’t have the energy to celebrate either our anniversary or my birthday.

We are supremely knackered. We are sick of dealing with stuff. When Richard is tired or stressed or upset he shakes phenomenally and I, by his side, shake with him. He literally shakes the furniture (Yay! We’ve got furniture now!) and all I see is our world quaking.

When too many problems and noises and mishaps come too fast I lapse into fight or flight instinct, and anxiety rules. When anxiety rules me, it rules Richard too.

Richard has been suffering with a chest cold for weeks and there’s not been enough down time and peace to shake it off. Parkinson’s can cause some people to have weakened immune systems and struggle more with viruses, and he needs to take extra care of himself forever now.

How you cope and handle things is not all about strength, willpower and attitude. It’s about what extra stuff life throws at you.

We chose to handle Richard’s diagnosis well. We chose to see the positives. We chose to maintain our senses of humour and we chose to have a good attitude to it all and treat the moving and the house renovations as an adventure. Our minds were fully turned on to strong, good attitude and glass half full – if not more so.

But we can’t willpower away the fact that his tremors got worse. We can’t positive attitude away the aches and pains. We can’t say my often crippling anxiety is just a mind over matter thing.

Yesterday my anxiety appeared in the form of a force field that pinned me to the spot in terror and left me unable to speak. Think rabbit in headlights. Anxiety force fields are the result of exhaustion and not enough repair time. (Thank goodness for the internet and social media where my words can continue flowing freely). I thought I would pass out.

We can’t choose to not have our brains. We can’t make the tiredness go away. We can’t lie about how intolerably difficult some moments have been.

I’m honest about my feelings and. I’m self-aware of the place I’m at.

I’m not moaning, whinging, ranting; I’m not asking for sympathy or answers.

I’m not angry. I’m not fed up. I merely recognise what is going on in my life, my head and my heart.

It doesn’t feel natural to silence myself until I have only good news and happy scenes to share, and it is not always healthy – and certainly not necessary to those who truly care.

Projecting a perfect life onto the watching world can be hard work and can cause people to retreat if they feel it’s the only thing allowed.

For all the good, this is HARD work. For all the breathing in there needs to be breathing out. And right now we need to do extra, slow, heavy breathing out.

I think people often misunderstand openness. It’s not glass half empty. Not for us anyway. It’s honesty.

This evening I found myself looking at photos from last year – specifically the ones where I was still trying to work out why Richard wasn’t well – because his first doctor had said it can’t be Parkinson’s… Yeah…

My head went to some bad, scary places. Suffering in silence and denial and holding so much in is awful and halts progress.

As everything we’ve had to come to terms with this year sinks in, and the literal dust literally settles, we can see how the next steps can now appear. We’ve rebuilt our identities, we’ve rebuilt our home, and now we can start to rebuild our life.

I look forward so much to seeing Richard being physically active again and regaining his strength and ability to fight. I look forward to having time and energy to enjoy this space we’ve made and planning life-enhancing activities.

There is so much to do.

But first we rest. We are so very, very, very tired.

Some people need to get out more. I guess you could say we need to get in more right now!

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.

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.

ALL CHANGE: From Autism Awareness Month to Parkinson’s Awareness Month

It’s April again. This year is very different. We have a new diagnosis to deal with, and here, in our family – in our relationship as a couple at least – this new diagnosis has overshadowed the old ones, and probably always will.

April has been marked by autism charities as Autism Awareness Month. April is also marked by Parkinson’s charities as Parkinson’s Awareness Month – with Parkinson’s Awareness Day in 2018 being held on 11th April.

My husband has been diagnosed with Parkinson’s Disease this year. This, as much as my anxiety and my Aspergers, affects each individual differently. And it is different each and every day too.

We are slowly reading a few pages of Michael J. Fox’s first Parkinson’s memoir: Lucky Man, each night, and I am recognising in my husband the same early rejection of the possibility of Parkinson’s, the same denial, and the same desire to not let it define or dominate his life, and I am hoping his progression from now will be much the same too. Michael J. Fox, as far as the book goes, doesn’t suffer with dementia or sleep problems or depression or gut problems or incontinence. He has remained active and positive and eventually become very public and very vocal about the disease. But at first, he, like my husband, was very quiet about it. Understandably. It’s a lot to take in. And it’s not who he is. It hasn’t taken his identity. He is still him.

But no one knows what will happen. No one knows how the next ten years will be, the next twenty or even the next day. Some days Richard tremors a little, some days he tremors a lot. Some days he just seems “wrong”, closed off, not himself. Some days I think he might be depressed and then he bounces back suddenly. When he wakes in the morning, I wonder, ‘What will we get today?’ There might be hours in each day when everything seems just how it used to be and nothing reminds us. And there are other times that are all about reducing the stress and anxiety and telling him to stop and to breathe and try to distract himself from something that’s upset him. Something upset him enormously recently and I could see how it now plays out in a much more physical way. Physical consistency has become an issue, which in turn means consistency in general has become an issue.

Kind people, with family experience of Parkinson’s, want to tell us it’ll all be okay – or at least okay-ish, or that they’re overwhelmingly sad or sorry, or that a certain drug regimen works wonders – based on their own experiences. But it’s not that simple. It’s a waiting game and it’s a lucky dip. The symptoms vary enormously from person to person and the reaction to medication varies enormously too.

Just like autism and anxiety it’s not a straightforward thing. As a Parkinson’s brain ditches the dopamine in its own very individual way, so it cherry picks the symptoms and delivers sets of struggles unique to each patient.
I understand this very well. And I understand the well-meaning people with their preconceived ideas and own observations and experiences.

Michael J. Fox said in an interview I watched recently that in a million people with Parkinson’s there will be a million different experiences. They are all valid. And we are genuinely grateful for the camaraderie and support given. I am grateful that I see so much love for my husband from inside and outside the family.
But there is no known trajectory. It just will be what it will be. His version.

Parkinson’s has made it into the U.K. media recently with reports of Parkinson’s patients being treated with ignorant unkindness and impatience in public places. It seems that people don’t know enough about it to recognise it and they fear difference or behaviour they can’t make sense of. Similar to a stroke patient after a significant stroke, a person with progressive Parkinson’s can’t get their body to do at the same speed what their brain is ready to do now, and there is often weakness and stiffness on one side compounding that inertia. It must be infuriating.

So it’s clear there’s a long way to go to understanding this disease and getting the public to understand it.

I’ve had to become more aware, more educated. I was researching privately and quietly before Richard’s scan and began to make myself ready for what was beginning to look inevitable.
We saw Richard’s brain scan at his follow on appointment and Richard knew I was more interested and ready to deal with it than him and he pushed me to get up and come forward and take a look. I saw inside his brain for the very first time. That brain that holds all his memories and instincts and desires and the very essence of who he is.
Wow.
Unlike a stroke, where brain damage is visible, in Parkinson’s it is only the dopamine transporters that are damaged. A DaTscan lights up the healthy dopamine brain cells remaining but Richard has dark areas where dopamine should show and yet there is already a chunk missing (I don’t believe “chunk” is a neurological term!). It will have been going on for years before we suspected anything. It’s strange to think he’s had Parkinson’s all these years as we lived life normally and unawares.

Our life and our future is still almost as uncertain and as much of a guessing game as it ever was. Only now we have something we have to live around, to accommodate, to make allowances for.
And I do mean “we”.
Although of course, this is first and foremost my husband’s struggle, it is our struggle. Life is about how we don’t let this control us, about how we implement change, about how we invent workarounds and how we are always looking forward.

From now on life is different. And how I live it will be different because this is our diagnosis, our motivation for change, our family, our past, our future, our partnership.

When “The Done Thing” might be ableism

Ableism ~ discrimination or prejudice against people who have disabilities

I’ve thought long and hard about saying this and I think it’s necessary. This is not aimed at anyone in particular, instead it has grown from a combination of comments and actions and general thinking over a few years.

Lots of people think talking to someone face-to-face about something is the proper thing to do. The second best way is a phone call. Anything else is rude, unacceptable, lame, thoughtless, yadayadayada. I’m not saying everyone judges others who don’t do this – many people just assume it is the acceptable behaviour and so that’s how they function but many people do judge. They may not realise they are doing it until they hear themselves criticise someone not following The Order of Communicating Properly.

From what I can gather the next best way is to leave a message to say that you want to talk to someone. Or leave news or discussion with your actual voice. After this texts are allowed. Personal messages on social media are a last ditch emergency allowance.

Posting stuff on social media is often seen as inappropriate. It’s also rather cruelly called “overshare”.

But what you may not have thought about is that this is what is called “ableist”.

Many people with anxiety, many autistic people, or people with speech and language problems say what they need to say far more coherently and confidently and have an equal standing in a conversation if they can type words.

Many of us panic in stressful situations and in situations where we are being eyeballed (even in a sympathetic way). Being forced to function in ways that are not comfortable gives an unequal standing and means the person with the difficulty is diminished and their rights to equality stamped on.

Can we please get over this idea that sharing stuff on social media is wrong (unless it’s about another person without their permission); that communicating in the most comfortable way possible is somehow not understanding social etiquette.

It’s actually discrimination.

Anxiety Acceptance: this is me

Anxiety makes me skip meals and eat nothing for hours then eat popcorn and chocolate for hours and anything else that will boost my blood sugar. It makes me not sleep when I should sleep and feel I must sleep when I should not sleep.
It makes my heart beat like tom-toms in my chest and my ears. It makes me bite down all my fingernails. It makes me chatter through films and give up on every book I try to read. It makes me forgetful, unable to listen, unable to sit still, unable to find strength. It makes me ache, it makes me fat. It makes my face puffy and round. Anxiety stops me sticking to any task. Anxiety steals hours and whole days. Anxiety paralyses and panics so that I am both at once ready to run yet powerless to; desperate for action yet trapped in inertia. Anxiety rips up plans, disturbs peace. Anxiety stores fat on my belly yet tells me I’ve no time to exercise. It shouts at me through every thing I try to do for myself that I’m being selfish. Anxiety has a list of things I should be doing instead and where I’m going wrong, yet when I start that list it bombards me with so much other information that I lose my way. I lose minutes, hours, days, circling.

Anxiety butts me in the belly like an angry goat and sends shockwaves down the nerves of my arms like a jackhammer until I lose fine motor skills and fizz and tremble with weakness. It makes me drop things, injure myself and wonder at my own capabilities.

Anxiety makes me startle at every noise and it makes me terrified of the unexpected. It copes badly with potential conflict and gears itself for harm too easily.

Anxiety makes it almost impossible to cope with 2 different sources of sensory information and often others’ “ordinary” is my “Way too much!”

I was born this way. It’s all I know.

My motto is Always expect the unexpected.

Anxiety has taught me that absolutely nothing comes easily, that life is full of surprises, twists and turns; to be ready for anything, to seize every possible moment to enjoy normality and peace. Anxiety has taught me that the distractions of nature and the ocean are life’s greatest blessings, that a hug can heal, that a touch can calm, that a kind word can bring good tears; that simple is beautiful. That love is healing. Anxiety has given me no need for thrills and spills and adrenaline rushes (they keep on coming anyway) and instead has given me an instinct to be uncomplicated, non-competitive, a carer and a soother. A peace-seeker.

Anxiety makes me a super quick-thinker, an urgent problem-solver, an impatient completer.

Anxiety makes me exquisitely delighted when I find release and distraction from the worries of daily life. Small thrills are huge to me. The little stuff is truly wonderful.

Anxiety makes me spot things no one else has spotted. My on alert is highly useful, and my quickfixer mentality won’t rest until all avenues are explored. I literally and metaphorically sniff things out.

Anxiety is not me but it is a constant companion; a part of me. If I acknowledge it and let it play and make provision for it in my life instead of fighting it we live in a kind of harmony together. If I try to pretend it doesn’t exist and try to beat it and ignore it and override it then I lose the part of me that notices stuff and that finds peace from acceptance and instead it works underground to destroy my health.

I’m not beating it, I’m living with it. Acceptance is everything.

This is me.

It’s not all good. But it’s not so bad either.

I can’t hate anxiety anymore because it would be like hating myself.

How futile would that be?

Ode to the Gum Tree, the Cicada and the Kookaburra

28 Dec 2017

It’s high summer in Australia. Pictures flood my social media of frost and snow back home. Despite the extreme, uncomfortable heat that I am far from acclimatising to, I don’t miss the snow or long for cold. In terms of sense of event, Christmas was more like an English August bank holiday than the sparkly affair it is in cold countries, and I surprise myself with the realisation that I don’t care.

Here the sun is so high, shadows are mere puddles at the bases of trees, air conditioning in cars is essential, and clothes with waist bands are clingy and oppressive. The heat scorches my skin even in the shade. I have come unprepared and have already been shopping and bought myself looser dresses which let my skin breathe.

The radio stations have finally ceased playing Christmas tunes alongside summer jingles, and things make a little more sense. Blue and white agapanthus flowers appear regularly at the roadside like a national flower. For the first few days I repeatedly marvelled at the blue haze.

Homemade roadside signs advertise fresh picked peaches and nectarines for sale, and pockets of cicada groupings roar like white noise in waves as we drive by – overpowering even through the closed, oven-door-hot windows. Resilient gum trees grow everywhere out of everything, so it would seem. An admiration for these majestic trees increases each day as I wonder at their existence and their ability to cover dusty land with life-giving and life-preserving forests. Not as samey as I was expecting but differing very much in shape and colour. Skinny, thick, red trunks, grey trunks, burnt black trunks, multi-coloured peeling trunks. Sure the greens and shapes that come of fertile, moist ground are more diverse but these hardy beasts are something else. Nothing to be sneezed at, I joke to myself as I think of the nasal clearing power of eucalyptus oil.

My head and body are still confused. I’m not a seasoned traveller and am always very much pushed and pulled by the seasons. To jump, teleported, from shortest coldest days to longest hottest days rather than easing into a season has confused my natural rhythms and I feel very much a visitor to an experience rather than rolling with summer. The shock of early morning cicada choruses and the first blast of a laughing kookaburra has had me hurling myself out of bed at 5am.

Just as my mind slips into thoughts about what time it is back home, we journey onto an unfinished road surface and slow our car to view kangaroos grazing in the valley. As Joel and I attempt to step out to photograph them, the kangaroos bound away up a slope into the trees and are instantly invisible. The dry heat, away from the coast where we are staying, is stifling and am back inside the cool car in seconds.

Rows of mailboxes sit together at the entrance to dirt tracks. I count at least eight homemade, rusty, paint-peeling boxes, hammered, all different and at different angles, into the dry earth. I look back and wish I’d photographed them. Diverse yet giving the same message: don’t come this way, the terrain is too tough for your tarmac only car and your delicate skin and untrained physique. These mailboxes were made by people with resourcefulness and resilience you can only dream of.

We stop to talk directions and wandering off course, and the men joke about the film: Deliverance, and sing a little banjo riff.

It’s now I discover we didn’t mean to come this way but I’m glad we did. I’m glad we left the clean, undusty comfort of the main roads. I’m glad we imagined the harsh, yet beautiful reality of life before infrastructure, and places where kangaroos still feel welcome and free.

I admire those inconspicuous dwellers who live beyond the easy and I indulge in the mystery of their struggle and how much is choice or necessity, and how far the electric cables and water supplies reach into this land.

The dangers that come from getting lost in such a country are so great that “experience” is organised, signposted, controlled. Wildlife is viewed from visitor centres and marked walks.

I know I will return home vastly limited in my knowledge and experience, and will not have seen the Australia I have watched on TV from the comfort of our sealed, Northern Hemisphere, pest-free, modern home, but this experience in itself is a good experience and a true one, and I have fallen in love with its inaccessible unfamiliarity juxtaposed with the determination of humans far far more than I expected to.

(The video above is not, in fact, from the day we got a little lost in the wild, but from the huge gum tree in the drive of our rental property. The sound of the cicadas was often totally overwhelming and we were showered with cicada “rain” (wee) each time we passed underneath)

Slowly regaining some perspective

In 2009 after our father died my world went very wrong. Already fragile from watching him die from a, quite frankly, relentless and evil revolting illness, I was terribly traumatised.

But I had 3 children, one of whom turned 4 on the day of the night Dad died. I had all the chaos and responsibility of a busy mum at Christmas and I had much to do each day.

I kept my suffering locked away. Things were far, far worse for our mother who had lost her best friend, soul mate and only true love and who didn’t have a home full of children to keep her going and get her up in the morning. I put her needs before mine – of course – and I don’t regret that at all. She was going through her own version of crazy and hell, and needed someone to rant repetitively at each day. I hope it kept the crazy at bay a little to spill out some of the trauma but I suspect it was the emotional equivalent of shouting “OW!” in reaction to her intense pain.

The way to keep going is to act, to put on a front, to ignore all calls to deal with the trauma. I blinked away thoughts and tears, I laughed too hard and too loud, I bought cheap shiny crap to brighten my world. I didn’t have the time or the space to fall apart or fall away for a while. I drank too much. I ate badly. I poisoned myself as I threw everything at the nagging monster who wanted to drag me down and make me grieve for a time and, worse still, think about what had happened.

I wanted, rightly or wrongly, huge happiness and laughter and distraction. I wanted fun and antithesis to the horrors. I’d seen a dead body. I’d seen the excruciating pain and suffering leading up to that body and hadn’t witnessed a peaceful end to a life that ended too soon. I was haunted by images and saw an apparition regularly at night for a few days of Dad slouched in a chair in his worst state as he had been before the end. I realise now it was flashbacks and a form of PTSD. I wanted him to haunt me but when he did I was terrified because I was just watching him suffer all over again. It was the wrong Dad. It had been 9 months of bad news and phone calls and terror. It just kept getting more and more bad and more and more painful. The helplessness was dreadful, witnessing the cruelty of a disease that caused so much pain and distortion to our big bear of a Dad broke all our hearts. I couldn’t fully take on board or discuss just how dreadful it was. So I kept on trying to make the pain go away and make it leave me alone.

8 months after Dad died I was supposed to celebrate my fortieth birthday but it was impossible. Every celebration was hard. Not just because he wasn’t there but because I couldn’t shake off the feeling that life is grim and cruel. We went to my husband’s niece’s wedding just 5 months after Dad died and I felt like a ghost, not completely there, slightly removed from everything. A desire to run away from everything (which I’ve always had) became stronger than ever. I wanted to hide.

I guess it was a kind of breakdown.

But I couldn’t have a breakdown. I had a home and three kids and a business to support and life kept finding me other things to deal with.

I look back now at the last 9 years, since 2008, when it became clear that Dad’s treatment was not going to work and I realise that while denial is a coping strategy, it’s not sustainable.

My anxiety since has been at an all time high. Everything causes me angst. My memory and organisation has never recovered. I spent years thinking “who’s next” and I still find every niggle and illness my family have terrifies me while I imagine deadly illnesses. It seemed safer to float in a state of permanent anxiety and be ready for anything than to relax and be fooled again. Escapism had to be alcohol and the most shallow and pointless TV I could find. Films had to be comedy or drama but no fear or heartbreak.

I’m writing this because for all these years I haven’t been able to be completely honest about how it’s affected my already very sensitive self.

It’s increased my fear of losing people. It was already abnormal because of losing a baby sister when I was 3 and probably being genetically predisposed to be highly sensitive. Taking anyone into my life still feels like a huge risk now.

I fell deeply into social media for my socialising, and it was mostly very therapeutic and much easier than physical relationships. Anyone who criticises social media as an alternative to conventional physical, face-to-face socialising really doesn’t understand. It was good for me and I have met some amazing very real people online.

But my feeling of “Oh God, this is all going to go wrong” prevailed. I hurt very easily and panicked at every misunderstanding.

I’m just feeling now as if I’m in a position to see why people upset me so easily. But when you’re comparing your own suffering with others’ and think theirs is worse it’s not as easy to quantify your own.

Over more recent months and years I dramatically shrank my online contacts and acquaintances in an attempt at self-preservation but other than creating a kind of holiday from risk of conflict it’s not made me feel much better.

I have to put myself back in the line of risk and I have to see it for what it is. I have taught myself some tips for detaching myself from other people’s reactions so that I can be less distressed at times of anxiety crisis. It’s not easy and it never will be but it’s better than being lonely or leaving people thinking I want them out of my life when that simply isn’t true.

If you feel I’ve deserted you or neglected you or overreacted to you, this is why: I simply didn’t have the emotional capacity to deal with perspective. Everything was enormous and I reacted like an animal in mortal danger. I’m not better off with fewer friends, I’m better off with no conflict and that’s what I’m working on now.

Thank you for reading this far.

Sorry.

I don’t know where to start. I really don’t know where to start.

I don’t know where things begin so where do I pick up from?

So I’ll start with reasons:

Anxiety, childhood and adult traumas, being misunderstood and misjudged, being bullied, mystery stomach pains, mystery exhaustion, anxiety exhaustion, insomnia exhaustion, social exhaustion, overstimulation exhaustion, hormonal problems, problems with executive functioning (in my case this means never knowing what order to do things in or how long they will take), untapped and unexplored creative yearnings, a feeling of wanting badly to fit but knowing I never will, a need to find solitude and space beyond the realms of what others consider “normal”, an intense hypersensitivity to everything going on around me, extreme empathy which means I literally suffer with people as well as feeling sympathy for them, low self-esteem, fear. In more recent years pain from hyper-mobility causing me to use my muscles badly. Uncommon reactions to foods, medicines and other stimuli. Massive emotions that cause me to feel hurt, heartbroken, moved, ecstatic, frightened, offended and traumatised and also highly amused and deeply in love and overpowered by music more easily than most. (I have to stop myself bursting into tears about the big feels of life literally every day. Often just because a sound is beautiful or something happens just at the right time). Absolute terror at any prospect of conflict. Fear of phone calls, fear of unexpected events or visitors, fear of losing people. Massive, massive, massive fear of losing friendships – so massive I don’t fall into friendships easily. Inconsolable sadness and frustration if misunderstood. Crushing pain in my chest and around my rib cage and back as if my heart is hurting lasting days if someone upsets me or misunderstands me. Socialising replay and fallout where I am kept awake by reruns of everyone I’ve talked to that day and then knackered while I try to recover.

That’s just a few things off the top of my head!

So why these reasons?

Because I’m fed up. And I’m sure some people are fed up too.

I just want to get on with my life. I don’t want to keep shrinking my world because people think I’m someone I’m not or I’ve said or implied something I haven’t just because I’m an individual and don’t always have the social energy to explain myself. I’m fed up with feeling people expect me to do life differently from the way I’m doing it and not just loving me for who I am. I am so tired of being afraid. So tired.

I don’t want help, guidance, counselling, drugs, advice, tips, or pressure to conform. I just want to get on with my big feels life and not be judged.

So, my point:

I’m sorry.

I’m sorry if you don’t “get” me. I’m sorry if you misunderstand me, I’m sorry if you think I’ve offended you or not measured up to your ideas of how I should fit into your world. I am genuinely, truly sorry if you don’t think much of me. I’m sorry you can’t see beyond what you think I am based on the way I held myself the last time you saw me or what you think I thought based on my silence the last time you tried to interact with me, or the way my words entered your brain in a different way from the way they left my brain and you didn’t stop to think that it’s not me you should be blaming. I’m sorry if you read my self-preservation as hostility or rudeness.

I’m sorry that because I’m not like you you think I must be faulty or bad or bad-hearted or in need of some kind of fixing.

I’m sorry. I am sorry.

I don’t want a world that is shrunk to tiny because I can’t muster the energy to act for your sakes every day. And yet that’s where I find myself.

I don’t want to keep thinking “Who the heck am I?” because I’m this to you, that to her, the other to him and neglectful to myself. Acting every day in different ways is pretty shattering.

I’m clever. I have a degree. I’ve studied a vast array of subjects. I’m great at research. I fix what needs fixing, I patch what needs patching, I find help for things I think are a fault and learn to love what I know is not a fault but simply my individuality. I had to be very brave and consider others’ feelings from a very young age and I’ve lived this way ever since. I’m always looking at how others are feeling and wondering what I can do and feeling part of you as if we are all joined in some way. I will literally be happier if you are happy and beside myself with worry if you are not.

I don’t expect you to research me. I don’t expect you to completely understand. What I did expect was for people to just realise and accept they simply don’t fully understand me and that was fine – they just shouldn’t judge.

An “Oh! You’re not like me?! Hell, that’s just fine” kind of acceptance would be great.

But people don’t always just accept. They don’t even know they’re not accepting. They look for ways to adjust me regularly because there’s comfort in familiarity and sometimes I don’t always do all your familiar stuff like you’d like me to. Deep down you find it hard to think it’s okay. You know you do.

I’d love it if you could try though.

Do you know how hard I’ve been trying all my life?

This isn’t a call for pity or sympathy. Nor is it navel-gazing, self-indulgence. It’s more of an outward-looking study of human behaviour around those who are not fully understood, and it’s an apology that I can’t not give a flying fig and move on or ignore or just be happy to hate the way some can because I love people and I can’t cope with bad feeling.

I give lots of figs.

So why am I sorry?

I’m sorry that’s it’s not my fault and that there’s nothing I can do about it. I’m sorry that I’m surprisingly happy with the way I am and you’re not so much. No really – I know you think I’m breaking some kind of unwritten rules that don’t actually exist. I know. I feel it. I feel it very well. I am tuned into little adjustments in your approval that you’re probably not even registering yourself. But subconsciously you’re point-scoring me a heck of a lot of minuses. I’m sorry that I have to shrink away from so many of you so often because being misunderstood is so physically difficult as well as so emotionally devastating. I’m sorry that my way of demonstrating caring is different sometimes from your way of demonstrating caring and that you can’t always see that both ways are acceptable. I’m doing big cares in ways you haven’t even thought of and you don’t know you’re breaking masses of my social rules and I’m not even mentioning it or holding it against you.

I’m sorry because there is so much more potential for all of us to be more joined by empathy and yet… and yet…

Well. I’m just sorry I am. Because I feel we’re all missing out.

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