Caring

When this is all over and the dust has settled I am most likely going to come down with a bang.

My wife suffered serious complications after a minor operation Tuesday. Her blood pressure dropped to dangerous levels at one point and it was only the timely intervention of the doctors at the local hospital that saved her. She came home the next day but is still very ill and in pain.

She has to rely on me to care for her. It’s not easy for either of us – she has always been a very independent woman and asking for help does not come easily. I suspect I am misreading some of her signals: I see the anger at the surface when I should realise that her fear and pain is causing it. It’s difficult for me to be sufficiently detached to properly analyze her state of mind – to properly empathize requires that I, paradoxically, first have to distance myself so I can be objective.

I feel so helpless: there’s nothing I can do to take away her pain, to make her better. It will just take time. All I can do is try to make sure she’s got everything she needs to hand and all the household jobs get done. I’m not very good at it – left to my own devices I struggle to look after myself, never mind anybody else. I don’t feel as if I’m doing enough – I think that I’m just reacting to situations that arise rather than being proactive and forestalling them. I just think that I ought to be doing more but I don’t know what more I could do.

I keep noticing the symptoms of an impending shutdown – I get frustrated and tired more quickly and I feel the urge to disconnect, to get away from everything for a while and go for a long walk by myself. But I won’t let myself do that right now – I can’t allow myself that luxury until she is stronger. It takes its toll on me: it is physically very demanding. I feel constant tension across my shoulders and down my back, caused by the stress of the situation. Once she recovers sufficiently I can take the time out I need to recover. But until then I must carry on doing the best I can.

To My Wife

When you called me yesterday
I tried to get to your side.
Traffic conspired against me:
Frustration, impatience:
I was driven, I had to get to you.
All those people
Going about their normal lives
Were just obstacles
In my path.

I arrived late; you had gone.
Taken to that place of life and death.
I found you there,
In pain. You acted normal,
Not wanting to distress me.
But I know you too well.

I knew it had to be bad
For you to end up there:
Overcoming your phobia,
Asking for help.

You asked me to get you out;
I side-stepped, dodged the question,
Tried to keep you occupied
Until the doctors arrived
With their questions and needles.

Your condition changed,
Stirring them into action.
I was left standing on the edge
And then outside the door.

I looked around the ER:
I couldn’t take the sight
And turned my back on the room;
Stared at your door,
Fighting the impulse to run
From that place.

But I could not run.
I was more afraid to leave
Than to stay.
Then they moved you
To Resus.

They connected you
To wires and tubes:
Fluids in, data out.
You rang alarms:
This reading too low,
That one too high.

I stood by your side throughout,
Keeping you calm
As best I could.
Keeping my own feelings
At one remove:
Time for all that later.

They stabilized you:
You became more lucid.
You told me to go home:
You’d be all right.
They moved you to a ward,
I went home.

You had me worried,
Pacing from room to room,
Unable to settle.
I felt helpless.
Hour after hour
Until exhaustion overcame me
And I succumbed to sleep.

I awoke scant hours later,
Knowing something was missing.
Still dressed from the night before.

The phone rang:
I had to answer
Although I feared it
Even more than usual.

A flood of relief:
You were being discharged.
I came to collect you.
We went home.
Back where we belong,
Together.

Tired But Happy

This weekend exhausted me but – for a pleasant change – not because of emotional problems. It was down to working (and playing) hard. I worked the bar Friday night during a 21st birthday party – it was a sensory maelstrom with loud music, flashing coloured disco lights and plenty of people shouting. I handle it by focusing on serving the customers, getting into the rhythm of taking orders, pouring drinks and working the till. It’s so familiar and I enjoy it so after about ten minutes I just flow. I can block out everything else pretty successfully – so much so that I don’t even notice much of what’s going on more than a few feet beyond the counter – and I lose most sense of the passage of time.

However at one point it got really loud – several people whistling – and I overloaded for a brief time. I have little idea how long it was – nobody else appeared to notice. I just stood there with my back to the room, holding on to the back bar counter to keep myself upright, with two half-poured vodkas in front of me. I couldn’t think – the noise had suddenly become painful as it breached the mental blocks on my senses and flooded in. All I was aware of was this glaring, intense, piercing whistle – everything else ceased to exist as my other senses were drowned out.

The whistling stopped and it was like waking up – that short period while my brain orients itself before I remember where I am and what I’m doing. Somehow I remembered the order I was in the middle of pouring, and – slightly unsteadily at first – carried on. It took a couple of minutes to get myself together before I was back to business as usual.

Saturday morning I had to go shopping. It wasn’t a long list I had to pick up but I needed to visit several shops to get everything. I hate having to shop on a Saturday morning – it’s so busy and people get in my way, encroaching on my personal space. It started fine. I got parked where I wanted and even had enough change for the car park ticket machine – a definite result because I usually forget to check I’ve got enough before leaving home. There weren’t many people around yet so I was feeling reasonably comfortable. And then I got into the mall and there was music playing too loudly – it was distracting and put me off balance a bit and I thought about fetching my earphones from the car but decided to persevere.

My first destination was a department store to look for a shirt. To get to the menswear department I had to get through the perfume department. I don’t know why but nearly every department store I’ve every been into puts the perfume department just inside the front doors so you have no choice but to endure the overwhelming smells and eye irritation from all the solvents in the air to get to any other part of the store. It turned out they didn’t have what I was looking for after all: I’m very particular about my shirts – the material has to feel right, the colour has to be right (usually black) and the arrangement of buttons and pockets has to be right. Ideally I would be able to pick up exact replicas of the shirts I already have but it doesn’t work that way. They change things. So I ran the gauntlet of the perfume department again to get out of there and went on to the next store. That one was thankfully simple – straight to the single item I was after, on to the checkout and out of there. Then back to the car, enduring the intrusive mall music on the way, and on to phase two: the supermarket.

Up to now I’d managed to avoid the crowds – it must have been because they were already at the supermarket, waiting for me to arrive so they could block the aisles and bump into me and run over my feet with their trolleys. In the midst of all this I ran into the first obstacle: my wife had put “nail varnish and lipstick amethyst” on the list. Now I’m not very familiar with these kinds of products but I did know which area of the store would have them. So I headed there and there were about six different brands, each with at least two or three different kinds of lip and nail colouring stuff. I examined them all and not one had the word amethyst on it! Any number of different, almost-descriptive colour names but not what my wife had written on the list. I was getting stressed so I decided to phone home and ask for clarification. Then I discover there’s no phone signal in that part of the store. Aargh!

I moved around until I got a signal and made the call. On my third attempt it didn’t drop out and I asked my wife what colour she meant by amethyst – she said “purple”. I asked was it a blue or red purple and she seemed confused – I explained that purple is a mix of red and blue with some being more blue than red and vice versa. I think I managed to make myself understood, but she said any shade of purple would do. (So why write amethyst then? I wondered.) So that was sorted. I went back to the shelves of cosmetics and looked for something that was unambiguously purple-ish. I found a nail varnish and then just had to locate a matching lipstick. Because naturally they would have matching colours, wouldn’t they? Hah! That would be far too easy. So I just picked up something that purported to be a kind of purple lipstick and high-tailed it out of that section of the store to go look for the next thing on the list.

What I haven’t mentioned yet is that they are reorganizing the layout of that store. Even the staff are not sure where to find some products. What hope have I with my out-of-date mental map? It took me about an hour to pick up eight or ten items and by the end of it I was about ready to throw a tantrum right in the middle of the place – like most of the children in there appeared to be doing. That’s one thing I struggle to understand – why do people persist in dragging their children round busy shops when they clearly get bored by it, hate the experience and don’t want to be there? I can completely understand a child finding it all too much and having a screaming fit because they have no other way to communicate their frustration. I don’t like to hear children crying and screaming – I find the sound unsettling and uncomfortable, even painful to hear.

I managed to get hold of every one of the dozen or so items on the list and was back home about two and a half hours after leaving – it was about a six mile round-trip. Boy was I worn out! But there’s no rest for the wicked – not even the very wicked – and I had to get changed, ready to go out to a wedding. Which meant I couldn’t wear my usual comfortable clothes. Suit and tie. In temperatures above 80 degrees, and humid with it. Unusual weather for this time of year in southern England. I’ve never enjoyed hot weather – I feel too hot and sweaty and my clothes cling to me in a most uncomfortable, irritating way. But I wasn’t about to let anybody down – it was somebody else’s big day and I was determined to show my support, relax and enjoy myself. And I did.

It was rather warm inside the reception venue – the local pub – even with the doors wide open but I just popped outside for a bit of fresh air every now and then to cool off. And to get a bit of a break from the disco lights, loud music and too much movement from people dancing close in front of me. I struggled a few times with the levels of sensory stimulation but got through it. And I did enjoy myself – it was a good night and the atmosphere was relaxed and friendly – although it was very tiring coping with the heat, noise, lights and people.

As a result I was kind of hoping for a quiet Sunday afternoon shift at the pub. I turned up a little early in case there was any setting up to do. Just as well as it turned out – even though a group of volunteers were helping, the place wasn’t nearly ship-shape by opening time. It was a moderately busy shift as well, with two soccer matches on the TV that brought a number of customers in. But I like it like that – as I said before I find my rhythm and it just flows. (I still dislike the food – table-waiting – side of the job because it disrupts that flow, but that’s only a small part of the whole.) I didn’t notice I was getting a bit dehydrated – I forgot to make sure I had a drink of water every now and again. Sometimes I’m not that good at taking care of myself! I think I surprised the boss a bit when I readily agreed to take a break the first time I was asked and grabbed a glass of water – I’m normally reluctant to take a break because I find it a distraction but that afternoon I was feeling drained and needed a short break.

I was pretty exhausted by the end of the shift – we seemed to go through an inordinate number of glasses given the moderate level of trade, and I’d also moved a number of barrels around the cellar. The 22 Imperial gallon kegs aren’t light when full – they weigh more than I do – but there’s a technique to moving them so you don’t have to lift the whole weight. In a way I was happy to finish the shift. I enjoyed it but I was so worn out and drained by the end. It had been a long, physically- and mentally-demanding but ultimately very satisfying weekend and I was very glad when I got home to retire to bed for a well-earned rest. Recharge the batteries ready for Monday morning and the return to my main “paid hobby”, software development.

Earth’s Child

One of my favourite memories is of a stone wall. Not just any stone wall but the one at the front of my neighbours’ cottages where I grew up. In fact stone fence might be a more accurate description: it was a row of upright stone slabs, made of locally-quarried sandstone as were the cottages themselves.

I remember the slabs well – not finely finished like tombstones but left a little rough and then weathered and rounded by the passage of about two hundred years. The raw sandy yellow of the freshly cut stone had long faded to a dull grey-brown supplemented by the green of moss and grey of lichen – it always felt as if the stone, once hewn from the parent rock, had been reclaimed and was once again a living part of the earth. They always had a softness to the touch – a complete contrast to the harsh, discordant roughness of brick and concrete. They truly felt organic, as if they had sprouted from the ground in that place. Being of natural material and standing in that place for so long they always felt to me as natural as the hills and woods.

As something is left to age in a place it acquires the character of its surroundings – hence the deliberate ageing of whisky. Eventually it becomes a part of its surroundings. I believe this used to be the case for people too, when they generally used to live out their lives within the community of their birth. There was a distinct local character (and often dialect) to each settlement and a sense of identity, of belonging. People within the area could tell in which village somebody had been born by their mannerisms and the way they spoke. But that was before industrialisation, before the growth of towns and mass migration, before the disruption and eventual destruction of those long-established communities, before everywhere became tainted by the homogenisation of modernity. Before we exchanged lives of hard toil driven by the natural rhythm of the seasons for lives of comparative ease driven by the clock on the wall.

We have lost our roots. We have severed the umbilicus that joined us to our mother. So many of us now think of ourselves as apart from the rest of nature. We think nothing of dividing the day into twenty-four hours and paying more heed to those numbers than to the rising and setting of the sun. Rain and snow are a nuisance. Insects are just pests. We expect the natural world to be as organised and sanitised as our constructed urban environments. We think of our lives as normal!

I’m not some Luddite advocating abandonment of technology – I appreciate and use advanced technology every day of my life. But I have not forgotten that I am just another animal on this planet, that I am part of the natural world. And if I did not feel part of nature I would not feel that I belonged – I would feel isolated, exposed, vulnerable, alone. But instead I am part of my environment. We have shaped each other over the years so that we now fit well together; I am just another part of the earth, one with the rocks and streams, wind and rain, plants and animals. As settled in my own surroundings as that old stone fence was.

People Who Have Influenced My Life – Part 2

I only met him the once but I read his autobiography and thought, “I admire this man.” Jason Robinson, the rugby player of both codes, had anything but an easy upbringing and came so close to throwing away the opportunity his talent had brought him.
He had the good fortune to come under the influence of Va’aiga Tuigamala – a man with great moral character – in his early days at Wigan, and the good sense to heed his advice. He turned his life around, arrested the self-destructive spiral of decline and gained a sense of self-worth. This was primarily a result of his developing a strong faith under the wing of the older man.
I admire his courage in facing his painful past, admitting his failings and working so hard to be a positive role model both off the rugby pitch and on it. I met him at a training session at the height of his Rugby League playing career at Wigan, before he switched to Rugby Union and represented his country in that code as well. I remember him as quiet, serious, focused, calm and, more than anything else, modest. Not for him the arrogance and swagger of pride that can come with fame; he believed that the most important aspect of his own success was that it enabled him to help others.
In Jason Robinson I saw a selfless, generous man; one to be emulated, who showed that helping other people is worth far more than any amount of personal success.

Fear of School

Have you ever been stuck in a place you never felt you belonged in? That happened to me when I went to grammar school (equivalent of high school). It was 1985. I was 11, coming up 12 when, having left Clevelands Preparatory School, I started at Manchester Grammar School in September.

Seven boys from my school had passed the entrance exam and won places at MGS. We were all in different forms – I suspect with hindsight that this might have been deliberate to encourage the development of new friendships. What it meant in practice was that I was suddenly in the midst of a group of strangers.

I never mixed. I used to spend my break times walking the corridors, feeling isolated. Early on I would pop into the form rooms of my schoolmates from my previous school, but they had quickly formed new friendships and I was not a part of that.

I gravitated towards other social undesirables: nerds and geeks of one form or another. Natural prey for the bullies. I was always big enough that I never experienced physical intimidation – it was the more insidious psychological form. I never knew how to respond to it. I would just sit or stand there and take it, while inside I was hurting.

An example of the callous behaviour of some of my classmates: the partner of our English teacher was stabbed to death and they harassed her with comments about the incident to the point where she broke down in tears and had to exit the room. If that was how they could treat a teacher imagine how much worse it was for me and the other pupils on the receiving end.

I had always looked up to and respected my teachers: I was always taught to respect my elders. I felt that they must be infallible. So it came as a massive shock to me when one of my teachers made what I considered to be an error of judgement. I and several of my classmates did not hear him assign homework one time. I still feel a deep sense of injustice that we were all given detention rather that him realising that it was his failure to communicate effectively.

That was the tipping point for me. I had always felt that despite the bullying from certain pupils, I could rely on my teachers for support. Turned out I couldn’t. At least that was how I felt, and that was what mattered.

When I think of that school I can remember numerous individual incidents. I can’t picture any faces, but that’s normal for me. I can remember the buildings in considerable detail. But all my memories of the place feel cold and hard-edged. I don’t believe I was ever happy there. I even recall the different smells of the different corridors: sawdust and sweat near the woodwork rooms and gym, old cooking smells near the dinner hall, paper and pipe tobacco outside the teachers’ common room and the only happy memory: the smell of new books in the bookshop.

All my other memories of that school evoke feelings ranging from discomfort to outright fear. I still find it very difficult to think of those two and a half years. I had to shut them out completely for several years before I was even able to tell my mother that I had been bullied. This is my most complete account to date.

A short way into my third year at that school I was finding it very difficult to even face the place and the people in it. I considered opening the car door – my father drove me to school – and jumping out. But I couldn’t do it because I was afraid of hurting myself.

In the end I was so anxious about going to school that I wedged my bedroom door shut with a screwdriver driven into the door frame: locked myself in so that I couldn’t be made to attend. At first my father was very angry – I can remember being very afraid of the anger and shutting down. But after a few days life settled down into the new routine whereby I would stay in my room night and day and everything else carried on around me.

Things couldn’t go on like that for long. Obviously my parents were worried about what was going on and before long I was persuaded to try to go to school. I remember sitting on my father’s car with the deputy headmaster talking but being unable to respond or get out of the car: an early shutdown. In the end my father gave up and brought me back home.

Before long a child psychologist was involved. I remember visiting her office. I don’t recall much detail but I do remember her asking what seemed to me, even at that age, a stupid question about whether a glass was half full or half empty. Obviously it is both at the same time, and there’s no reason to prefer one description to the other. There were other questions about whether I had suicidal thoughts – I didn’t – and that was about that. I got the feeling that I was beyond her limited knowledge and experience. As I’ve mentioned before, Aspergers wasn’t recognised back then.

The only thing that finally broke me out of me self-imposed isolation was a change of school. After that things went very well and I prospered. It goes to show the need I have for a supportive environment.

School Memories

My school days seem a long time ago now – I’ve lived half my life since then. There are some things I can remember clearly – fragments of brilliant clarity among the discarded remnants of temps perdu. Much of the time I spent there is lost now – faded with age beyond my powers of recall – and still more is ensconced behind locked doors in my mind.

Playschool (kindergarten, or pre-school), furthest removed from the present, divulges but few memories – a vivid recollection of an instance of my social phobia where I had an accident because I was too afraid to ask to go to the bathroom and a vague but familiar feeling of being apart from everybody else, of being on the edge, standing and looking on but not being a part of things. There are no faces in any memories of those times – I can remember the building (a Nissen hut) – its layout and furniture – in detail but despite there being teachers and other children in my mental pictures, none of them have any identifying characteristics – they are just impressionistic shadows of people.

Prep school (primary school) brings forth a stream of memories – almost always finishing first or second in the class, right through all seven years at this school. Not understanding when the class was asked who was Catholic and who was Church of England. (Although both my parents were C of E they always left my brother and me to make our own minds up about faith and religion.) Never achieving a single gymnastics badge in PE lessons – unlike the entire rest of the class – because I could never manage a forward roll. (My physical coordination is a little impaired and I have minor balance problems – I also still can’t abide the feeling of being upside-down.) Sitting inside reading on my own when the others were playing outside during break times. Feeling hurt when told that I had bad breath – I couldn’t use toothpaste as a child because the mint taste was too intense to handle. A ritual before exams – touching certain parts of my face and touching fingertips together. A special interest in astronomy and the planets of the Solar System – I remember being called up in assembly once – I was about 7 at the time – to recite the names of the planets in order of distance from the sun, and I remember feeling surprised that anybody would find knowing this to be in any way remarkable. Sitting on the floor regularly in assembly and on other occasions – was I the only one who found this painfully uncomfortable? Hating the feeling of how my sweater constricted and rumpled the shirt beneath it – it was part of the school uniform and I didn’t have any choice about wearing it.

I’m sitting here surprised at how most of these sound negative when I don’t remember being particularly unhappy at that school. I think they were more than made up for by my enjoyment of the academic side of things. I’ve still got all my end-of-term school reports and they all follow the same pattern – first in the class more often than not, poor at PE and games, poor handwriting, highly intelligent, very quiet – doesn’t get involved. I guess signs were there if anybody that knew me had been aware of ASD back then (late ’70’s and early ’80’s).

I’m going to leave writing about my memories of grammar (secondary) school for another time – there’s a lot of baggage there that I don’t feel like going into yet (see my earlier post about my childhood experiences). One thing I will say is that the atmosphere changes as I move from prep to grammar school – clouds are gathering; a storm is imminent. I get a sense of foreboding from just thinking about disturbing some of those old memories – there is a certain trepidation in case I awaken something terrible. I have a gap of about a year and a half both in my recollection of those years and in my archive of school reports. One day I may choose to unlock certain doors and confront my demons, but today is not that day.

People Who Have Influenced My Life – Part 1

Certain people left an indelible mark on me as I was growing up. I’d just like to give them a little recognition. I’m not going to name them though: I don’t believe that would be right without their permission.

One who particularly stands out is my English teacher from when I was studying for GCSEs in English Literature and English Language. She was head of department as well as teaching 4X and then 5X, my forms over the two years in question. I found her to always be very supportive – quick to give praise when deserved and very patient.

I always looked forward to her lessons and got great enjoyment from the subject. It was her that first gave me my love of language for its own sake and kindled my special interest in words. I honed my writing style over those two years under her guidance and grew to gain a great deal of enjoyment from the writing process which I have carried through to this day.

So I would like to say thank you to my former English teacher. I don’t believe I would experience half the joy I get from language without your influence. You are an inspiration to me.

Pulling Pints

I’ve been working part-time as a barman in my local pub since early this year. This may seem a curious activity for somebody who’s not comfortable talking to strangers, but the reality is that the large majority of customers are regulars with whom I was already familiar.

It all started when I volunteered to help out because they were short-staffed. I’d helped out behind a bar before when I was at university so I had some idea what to expect. I did my first few hours in exchange for drinks and to my surprise I really enjoyed myself and did a good job. I helped out a couple more times and then decided to make it official: I joined the company on the understanding that my main software development job had priority and started working a couple of regular shifts over the weekend.

Things I enjoy about the job: it’s primarily manual work and about the only thinking required is adding up prices in my head (I don’t need to because the register handles all that but I want to because it saves time and I like doing it) and remembering the drinks in each order. This means I can largely “switch off” so I find the job mentally relaxing. It’s also good physical exercise – very handy when my main job involves sitting down most of the day – and I’m probably fitter now than I have been for some years. I enjoy the routine of the job – each particular shift has its own pattern with the same regulars mostly coming in at the same times. Beer, especially “real ale”, is a special interest of mine – I don’t drink much these days but I have long had an interest in brewing. I’ve visited several breweries over the years and remain fascinated by the subject.

I get a particular buzz from it when I’m busy – I get something similar when I’m in flow when programming. I get into a rhythm, the endorphins kick in and I’ve occasionally found myself just grinning like an idiot and getting strange looks.

I’m not saying that I enjoy everything about it. I dislike serving food – it breaks the flow – and after I’ve asked a customer if everything’s ok with their meal I get stuck for anything else to say and just wander off feeling vaguely uncomfortable. I don’t get many complaints but I find it stressful to handle them – it’s not that they get confrontational; rather that I’m just not comfortable in that situation.

Funnily enough I find that I can mostly handle the people side of the job. Because I’m there fulfilling a role it enables me to talk to customers within the context of serving them. There’s a routine to it: I greet them, ask for their order, pour their drinks and take the money. It generally keeps to the routine and I stay relaxed. I’ve even got to know people through the job. When I’m in front of the bar as a customer I won’t talk to people I don’t know – that’s just how I am and I’ve always been that way. I have trouble with small-talk and general conversation as I’ve mentioned in previous posts. However when I’m behind the bar people come up to me time after time as they order their drinks. They get used to me, I get used to them and as I get more familiar with them I feel less uncomfortable. And having two feet of solid wood between me and them is a great way to avoid having anybody intrude on my personal space – I feel uncomfortably crowded if anybody stands too close to me.

It’s the little things as well that I enjoy: I’m genuinely pleased whenever I get a tip because it makes me feel I did something well. I like that the manager always thanks me at the end of my shift (don’t tell him I’d happily do the job just to be appreciated – I’ve never been motivated by financial reward which is just as well given the pay scales for bar staff). I like it when my regular customers – yes, I do think of them as mine when I’m serving them – seem pleased to see me. And I like the feeling of accomplishment and satisfaction that comes from doing something well.

Working with Aspergers on About.com Guide to Autism

Lisa Jo Rudy has kindly published a piece I wrote – about how Aspergers Syndrome has affected my working life – on her site, Autism at About.com. If you’ve not come across it before, this site has a stack of references to information about Autistic Spectrum Disorder and I think it presents a fairly balanced viewpoint. Mine is one of a series of posts written by people on the spectrum about their experiences.