Friday, 23 September 2011

Wednesday, 21 September 2011

Do Not Disturb



My dad is in his own little room on a ward full of shouty, wandering old men.

This 'do not disturb' sign hangs on his door.

I flipped it over, thinking it might be like one of those 'open/closed' signs, with the opposite message on the reverse:


but the back was blank, I was sadly disappointed.


Tuesday, 20 September 2011

Oxygen



Although my push to become Britain's top shed blogger is going surprisingly well, I'd like to depart from the shed theme briefly to say Dad went into hospital yesterday and is likely to remain there for about two weeks while they try and work out why he can barely breathe anymore.

That leaves me and Downstairs Monkey free to run riot at Mission Control.

Chances are we will do very little, because we are a pair of indolent buggers. In between visiting hours, we will just enjoy the quiet time.





Sunday, 18 September 2011

Shed Wars III - Revenge of the Hedge



Ta-daaa! The even uglier shed at the bottom of the garden.

I don't go in there anymore.


Friday, 16 September 2011

Shed II - The Sequel

By popular demand, here is a photo of my dad's newly-trimmed shed:



It contains, as it always did, an assortment of rusting tools, antiquated lawnmowers, cobwebs and rotting cardboard boxes.

I agree, ladies - it is not without character. It holds happy memories for me (although the best shed-related memories I have are of the other, even uglier shed at the bottom of the garden. That shed was my den. I wrote a play in there, for chrissakes, which precipitated me to temporary stardom at my junior school. It was where I masterminded a Secret Seven-style gang - members: me, and Stephen Tuppeny).

This shed, though, just outside the kitchen window, is where, as a child, I would drive the neighbours mad by practising my tennis strokes during Wimbledon fortnight - bonk, bonk, bonk. It is also where I hung a dartboard (and before that, a poster of the Bay City Rollers) to hone my arrows technique - clonk, clonk, clonk. And of course many hours were spent playing those solo catch games involving two or three tennis balls and a wall to bounce them off - thunk thunk thunk. The uneven grain and various protuberances only added to the thrills.

The shed was also a prop in a cunning plan to lure wild birds (and even squirrels) to eat out of my hand. I carefully constructed a lifesized replica of my young self out of old clothes, pillows, bits of wood, a balloon, wellies and a hat, and left it leaning against the shed for days, so that the wildlife visiting the bird table would become accustomed to seeing it there.

Then the swap was made. I donned the scarecrow's clothes and took its place, my outstretched hand full of bird seed.

I stood there until my aching limbs could take it no longer, probably as long as ten whole minutes. The operation was not a success, although I was at a loss to explain why.

The shed, then, is not all bad.

However, the thing to remember is this. My mum loved 'nice' things. Her dearest wish in life was to see the shed transformed into a bright new shiny white sparkling conservatory.

Instead, the shed stands as a permanent reminder of the crushing disappointment of being married to a man who was allergic to effort, incapable of change, who thought 'difficult' was the same as 'impossible'.


Thursday, 15 September 2011

Home



When I woke, I didn't know where I was.

Then I saw the sky glowing in the east through church-arched windows, and remembered I was home.

My little bedsit, at the top of an elegant three-storey Victorian house overlooking a Cardiff park. I've hardly seen it since I moved here in April.

No matter; it's been a good year.

When I woke again properly, at 9.53am, I dropped out of bed and did a forward roll across the floor, because I could.


Monday, 12 September 2011

Black And White

[click me, i'm interesting]

To avoid this blog turning into an extended rant about someone with Aspergers Syndrome, I'm going to post, one day late and proud of it, the obligatory 'what I was doing on 9/11' yawnfest.

(That bit comes right at the end - please feel free to skip straight to it if you can't be arsed to plough through the preamble. Spoiler: it involves sadness and disbelief.)

* * * * * * * * * * * * * * * * * * * *

On New Year's Eve 1999, I stood at Bastion Point, Auckland, with my partner of 10 years, watching fireworks flashing pink and white inside the heavy clouds that obscured the skyline. Clammy, soggy, miserable weather. It matched our mood.

It seemed ridiculous, standing there in the rain, arms folded, hardly talking, watching some washed out firework display going off in the distance. Pointless. Weren't we meant to be celebrating something? The new millennium in a new country, on the brink of being granted permanent residency? A new life?

I'd brought along a bottle of bubbly and two plastic cups, but they stayed in my bag.

A couple of months later, the permanent residency visas came through. Valid for two years only, but when renewed after that, lasting indefinitely.

Their arrival only served to lower the mood. Although we weren't saying it, we both knew 'indefinite' was no longer a word that applied to us.

We'd always joked that when we ran out of things to talk about, we'd split up. One night I blurted into the aching silence of yet another evening staring at the TV, "Shall we call it a day, then?"

A pause. He turned to look at me. Big, sad eyes.

"I suppose so, yes," he said.

Ten years snuffed out, as easy as that.

Except, not easy at all.

I went into freefall. I'd lost everything I thought was mine. The earth was no longer solid; was gravity even reliable? At any moment I felt like I might go spinning off into space. Alone for the first time since I was 18, I was terrified. I didn't even know who I was.

I couldn't stop crying.

We had a wedding to go to, in the UK, in June. Our return flights were booked, our outfits decided.

"Please, please can we not tell them we've broken up until afterwards?" I begged.

I couldn't bear the thought of all that pity, the questions. I was so caved in my wretchedness was palpable. He reluctantly agreed.

Nobody guessed.

The wedding day passed (they're divorced now). We told family and friends our news. All were shocked - we'd been so good together. Then the day came when he had to go back to his job in Auckland. Feeling so numb all I could think of to do was cling to the familiar discomforts of my family, I told him I was going to stay in the UK a little longer, at mum and dad's. Maybe a month or so.

Two weeks later, at a friend's 40th birthday party, I walked into the kitchen, and fell in love with the man leaning against the sink.

I'd heard of this love at first sight business but didn't really believe in it until that moment. But here he was, the man I was destined to marry, no question. No violins, no cupids, no heavenly shafts of light; it was merely a recognition, but no less extraordinary for that.

We talked. It was easy. He was gorgeous. Quick, sharp and funny, with the softest brown eyes I'd ever seen. A portrait photographer with his own business, recently separated from the girl he'd been with for a couple of years. I knew he was as excited by me as I was by him. We just, as they say, clicked. I waited impatiently for him to ask me out.

Did I like The Stranglers, he said? I loved The Stranglers, I said. Would I like to borrow some of their CDs? He could drop them round to me, he said. We could maybe go out for a drink, a meal too?

I'd like that very much, I said.

(And anything else you're offering, sunshine.)

He was offering love, marriage, a future. We only managed about six months together in the end. It was too intense, too passionate, too crazy for either of us to handle. We couldn't stay away from each other; we tore each other apart.

He was possessive. Jealous of my ex, jealous of New Zealand. I felt swamped. And I was as lost in his world of designer kitchens and expensive cars as he was in my shoestring world of wanderlust and inner searching. We tried to reach each other from our different universes but there was no common language.

Apart from in bed. I'd never encountered jealousy before, and found it ugly and distressing. I'd never encountered passion either: it blew me inside out and kept me hooked. Nothing else mattered when he touched me. The craziness dragged on past Christmas, through spring and into summer. Chemistry overrode misery. We tried to be friends, but we were no such thing. We were just a pair of broken lovers.

I had to get away: I was in pieces. My departure broke his heart. I borrowed a sleeping bag and went for a drive, up to Scotland, down to Cornwall, some centrifugal force throwing me towards extremities. At John O'Groats, I stared at the sea and wished I was back in New Zealand. At Lands End, the same. When I got tired of sleeping in hostels and laybys, I came back to Kent.

He found me a job, working on a mate's stall in a shopping centre.

I sold nothing. I was lovesick and hopeless. I would stand at the stall each day staring at the escalator, willing it to deliver him to me. Then I'd pray in the evenings for that text message - 'eyeball 550' - our code for him letting me know he was about to drive past my parents' house. I would rush outside to catch him. Or stay stubbornly inside, tearful and furious he was breaking my heart again.

Seeing him, not seeing him - either way hurt.

Eventually I knew it was time to go back to New Zealand. My residency visa was running out, and I'd never forgive myself if I let it expire. I asked him one last time - would he come with me? He couldn't, he said - he couldn't leave. But I couldn't stay. I booked a one-way ticket to Auckland for November 4, 2001, and breathed a sigh of relief. The madness was nearly over.

Fifty four days before I got on that plane, I was slouching by the stall when I noticed something unusual on the bank of TV screens in the electrical shop nearby. Each one showed clouds and clouds of billowing grey smoke. I wandered over to take a look.

It looked bad. What on earth was going on? Had a volcano erupted? It must be big news, to be on TV like that - had a volcano taken out a major city? Not Auckland, god forbid?

I watched the silent TV screens. As the footage looped, concern turned into cold, sick horror - it wasn't a volcano, it was Manhattan. I couldn't tear my eyes away. A crowd had gathered now in front of the shop, all of us silent, some in tears. The plane strike was the worst thing I'd ever seen, the towers' collapse a close second (I'd stood on that roof: this was impossible). When they showed people falling, I had to turn away.

At 5pm I shut up the stall and drove home slowly the long way, winding through country lanes, lost in the radio news. I pulled up outside 550, and kept listening.

Then my phone beeped.

'Eyeball 550' - and a blue BMW with personalised plates screeched to a halt behind me.

We stood in the road and talked.

We talked about hope and longing, disappointment and regret. We talked about misunderstandings and confusion. We talked about love, the events rocking the world relegated to backdrop for our own private tragedy. But we had, for once, a sombre and thoughtful headspace, a sense of proportion.

He said he still believed he'd marry me, one day. Still believed I was the one. He'd never get over me. Was I really going back to New Zealand, was I really leaving him behind?

I couldn't meet his eyes, this man I knew I'd love forever.

I nodded. Yes, I was.


* * * * * * * * * * * * * * * * * * * *

My ex met me at the airport, and drove me back to his flat to meet his new girlfriend. I lived on their floor until February. They got married in May, and I was one of two guests at their wedding at a remote spot on the Heaphy Track (where they met, a year to the day before). It was a beautiful time. We're still friends.


* * * * * * * * * * * * * * * * * * * *

I've bumped into The Rebound a couple of times since. Even though he never did lend me those Stranglers CDs, the thought of him still flips my stomach.


Wednesday, 7 September 2011

Greater Than Or Equal To



What I wanted to post about today, before I was rudely interrupted by the nostalgically old-school Dad/anger incident mentioned below, was this.

Yesterday, I finally plucked up the courage to check the internet for information on adult children of Aspergers parents.

While I've been researching what might be wrong with Dad for ages, it took me a long time to get round to looking into that particular topic. This was deliberate. I was strangely afraid of what I might find.

I might find out he didn't have Aspergers. I might find out what was wrong with me.

But yesterday was the day I could delay it no longer. 'Parent+Aspergers'; enter; oh my god here we go.

I spent the whole day, the whole evening, the whole night, absorbed.

It was like, after wandering alone for a lifetime, an outcast with a guilty secret, stepping into a giant hall of mirrors and finding your secret reflected back at you a thousand times over.

It was all there - on faaas.org, on an astonishing Wrong Planet forum thread, on the blog of the beautiful Doris Mash.

My story. My pain. My father. The details differing, but the essence the same.

The relief was incredible - I didn't imagine this nightmare. It's definitely AS. There are other people in the world who've had this experience too. He is different, unreachable, irredeemably selfish, and as cold as stone. The emotional damage he's caused is as real as day and night, or monkey gonads, or soup. And he will never change.

All these people say so. It's not just me. There is so much comfort in that.

It feels like phase one is drawing to a close now. Phase two is heal, move on, have a nice life.

'Here you go Dad, you can have all your shit back, I'm finished with it now. You're welcome. Goodbye.'


List



"Social Services are coming to see us at 2pm," I say. "Have you done that list yet?"

"What list?" he says.

"The list of things you think you'll need help with, in the event of me getting a job and not being able to come down to Kent anymore," I say. "I've asked you to do it a couple of times now."

"Oh, well, I've thought about that, and I can't think of anything."

"So, if I suddenly stopped coming - say, if I nipped out to post a letter this afternoon, and got run over by a bus - and if My Lovely Sister went away on another of her eternal holidays and never came back, and you stuck were here totally on your own, there's nothing you can think of you'd like help with?"

He thinks about it.

"I suppose I could do with a walk-in shower," he says.

"Social Services can't help with that, I've already told you. There's an 18 month waiting list and anyway you have too much money in your savings. You have to buy one yourself."

"So why exactly are Social Services coming?" he says, snarky.

"Because like I said, I'm probably going to stop doing this soon, because I'd like my little mail sorting job back in December, so they need to find out what kind of support you're likely to need when you're here on your own again," I say. "Which is why I asked you to do that list."

"I can't think of anything to put on it," he says.

"Really? Really? There's nothing at all I've been doing for you this past year that you think you couldn't manage if I wasn't around?"

He goes downstairs, grumbling.

Twenty minutes later I find him in the dining room, sat at his desk, going through paperwork.

"Done that list?" I say.

"I haven't done the list, because I am looking for my bank statements," he says.

"Why are you looking for your bank statements? They won't need to see your bank statements. They'll be here in half an hour and what they will need to see is a list of your care requirements. Bank statements aren't important right now."

"They are important. I need to find them."

"Yes, but not right now. Right now, you need to think about this list."

"I don't know what to put on this list."

"You honestly can't think of one thing you'd need help with if you were here on your own?"

"No I bloody don't. You tell me what to write and I'll write it," he snaps.

"I'm not going to do that. I want to see what support you think you need. I've already done my list. It's your viewpoint I'm after."

He grits his teeth, hunches his shoulders, and carries on sifting through his desk.

It is a posture I've seen many times before. It signals an explosion.

I leave the room.

When I return, he is still at the desk.

"Come on Dad, they'll be here in a minute. Please do this list. It's not difficult, all you've got to do is just think about what you might need a helping hand with when I'm not here. It doesn't have to be much. Just write a few things down."

He explodes.

"My list is in my head. There is nothing on it. All I want is to be left alone. LEFT ALONE. When I'm left alone I can think about the things I need to do."

Spitting, vicious fury, snarled through clenched teeth.

I laugh, not kindly. "What, think about all the things you need to do which you then won't do? You'll be left alone soon enough, don't worry. I'm just asking you to write a few things down on a list. Why is that so hard?"

It is a cruel question: I already know why.

Social Services arrive.

"So, what kind of things do you think you need help with, Mr H?" they say.

I show them our lists.

My list says:

ESSENTIAL:
Preparation of lunch/dinner daily
Monitoring medications twice-daily
Monitoring general health and responding to problems
GENERAL:
(ie Things I do at the moment)
Household
Prepare lunch/dinner daily
Housework/cleaning as required (cleaner comes Mon & Fri 2 hours each time)
Weekly grocery shop
Stack/empty dishwasher daily
Laundry
Fold dry laundry, return to bedroom
Put rubbish/recycling out weekly
Put milkbottles out three nights a week
Change lightbulbs, batteries etc, wind clocks as required
Notice when things need replacing, eg top up sugar bowl, tea caddy, change toilet rolls
Regulate central heating throughout year
Keep a shopping list
Ask if he wants a cup of tea (usually yes)
Personal
Monitor medicine-taking twice-daily (he rarely remembers without prompting)
Check leg wound regularly, alert District Nurse if any problems
Monitor/respond to health problems
Attend medical appointments with him
Other
Mobility – Dad is now wheelchair-dependent outside the house
Assistance with general finances, inc visits to bank, building society to withdraw cash. Keep an eye on bills.
Trips out for pleasure/general companionship
Car: keep tabs on MOT, tax, insurance, petrol, repairs
Put bird food out daily/replenish bird food supplies (very important!!)
Gardening (my brother-in-law mows the lawns every fortnight or so)
I do these things because he shows no inclination to do any of them when he's left to his own devices. This could be due to apathy or bad memory, or both. He appears to have no ability to plan ahead, and no awareness of his limitations.

His list says:

Housework and cleaning (this gets done by a cleaning lady)
Some cooking.
Some shopping.




Monday, 5 September 2011

Diary, Saturday 12 November 2005



"Ok some facts as I see them: I am banging my head against a brick wall trying to change what cannot be changed. I have spent 30+ years desperately trying to win love and approval from people completely unable to give it. I am sour and angry and complaining – upsetting myself needlessly by not accepting the situation, functioning abnormally in the role of ‘daughter’ when in other areas of life I function normally. I greatly lack confidence, having always been shouted down, sneered at, or drowned in disinterest. I get very tearful, angry and upset whenever I stay at Mum & Dad's.

During my time here I have succeeded in:

a) getting Mum help from Social Services in the mornings against Dad's wishes. So she is now being treated gently and with respect by at least one person in her life.

b) bringing Mum’s problems to the attention of the doctor and seeing her start having liquid meal supplements (Dad would’ve just kept making her meat-and-two-veg meals then shouting when she couldn’t eat them).

c) getting Occupational Therapy to put a bed lever on the bed to help her move herself around, a frame/raised seat for the loo, and longer legs on her armchair so she can sit more comfortably.

I can safely say none of these things would’ve happened if I hadn’t been here.

I also suggested Dad take the doorhandle off the loo as it was making it very difficult for Mum to get in using the handrails – and he did, same morning. I also got the mattress changed so she sleeps more comfortably, and got him to buy new, supporting pillows instead of the 100-year-old feather ones she’d been using that were making her neck sore.

Today Brother-In-Law will put down carpet in the downstairs loo, hopefully making it less icy in there. I have also demonstrated to Dad it’s possible to give her a hairwash downstairs (he refused to do it before as she couldn’t get upstairs, the only place hairwashes can ever happen, obviously). And I have told him in a calm, non-accusatory way not to speak to her so harshly (and later that day I found him sitting next to her on the bed with his arm around her shoulders, saying nice things. Don’t know how she would’ve felt about that).

So, perhaps my time here hasn’t been wasted.

However I am still struggling to come to terms with his irrationality and unpleasantness and the fact I feel devastated by his particular mode of parenting. Could do with a cuddle right now but hey I tell everybody else to deal with stuff themselves so I can get stuffed eh. The hollowness I feel, the deadness inside, I think is a desperate (and misguided) need for approval: 'please, daddy, please like me'. But no matter what I do he still doesn’t and that fucking hurts. Please daddy don’t shout, don’t rage, don’t be angry at me I’m doing my best but it’s not enough, how can you hate me so much when you don’t even know who I am?

Well fuck you, I’ll hate you right back you cunt; I’ll hate you too.

And inside I cry.

It’s not much to ask, is it? I just want him to open his eyes and like me. All my friends like me. Even my ex-boyfriends still like me. So why don’t you like me? I want you to give me something you can’t give. You don’t know how to love or care or cherish. You treat me like a stranger. You distrust me. You don’t respect me. You don’t even notice I’m a real human being – that hurts. Where there should be a bond, there is nothing. A yawning chasm, and the sheer drop into the nothingness I see there turns my stomach. You don’t even know how wrong that is. How YOU are is all you know. I’m disintegrating here. I hate you because as soon as I got old enough to develop a personality, you stopped liking me.

I had a dream last night, only sketchily remembered. Someone had moved all my things to the bottom of the school field at the end of the garden, into a tunnel, and I had to gather everything back together. I made a big pile of all my things and was glad there was nothing missing. But they'd taken everything, piece by piece, out of my washbag, which I found irritating before I realised it must've been some poor autistic boy who'd done it, so even though I felt frustrated I also felt sorry for him, and just shrugged and got on with the job of putting everything back."


Some poor autistic boy?

Jesus.

My subconscious already knew.

It's taken six years for the rest of me to catch up.


Friday, 2 September 2011

Tonight It Occurred To Me

I'm at THIS house...



...slaving in THIS garden...



...sleeping in THIS bedroom...



What happened to my life?