Saturday, November 29, 2008

Wired for sleep

“Would you like a cup of tea of coffee?”

“Won’t that affect the sleep study?”

“Not really, we only have decaffeinated here.”

The nurse returned with a cup of tea. Personally, I’ve never seen the point in decaffeinated coffee; to me it’s like non-alcoholic beer, Formula 1 races with no crashes, or having mutant genes but no superpowers.

“I’ll be back in 15 minutes to start putting the wires on, so you might want to finish up in the bathroom.”

I looked at the fresh cup of tea in my hand. “Um, 15 minutes isn’t going to be long enough for this to work its way through my system…”

“Don’t worry,” she replied, “if you need to go during the night, just buzz and a nurse will bring you a bottle to go in.”

I left the tea on the bedside cabinet, untouched.

Shortly thereafter I smelled like a vodka distillery as I was swabbed with surgical spirit before various sticky patches were placed over my body, face and head and attached to wires leading to a box full of little sockets. I had two straps placed around my torso, which looked very similar to ones I remember Maggie having to measure contractions; a plastic thimble with a wee red light was stuck on the end of my middle finger; and some kind of tube was placed around my face with 2 tiny offshoots sticking up my nostrils. Picking my nose was going to be tricky.

“Climb up onto the bed now please, Mr Ayres.”

“I guess it’s a bit late to say I’d rather sleep with my t-shirt on…”

I have to say, the idea of sleeping at all at the sleep clinic seemed rather optimistic. If I turned to my right, I had to pull the wires over with me; if I turned to the left, the bright green light on the box of sockets shone directly into my eyes; and if I lay on my back, I could feel the electrodes pushing into my skull.

Eventually I drifted off, waking periodically to shift position or try and scratch some itchy bit now inaccessible under a rubbery patch.

Then, suddenly, I was wide awake. I figured it must be close to 6.30am when I was due to be roused.

Then again, it might only be 5.30am.

After several attempts to read my watch by the wee red light on my middle finger, I gave up and rummaged in my bag for my battery alarm clock, which has it’s own light.



The next two hours lasted about 13 years and then I began to drift in and out dreams about being in car rolling backwards with no brakes, being back at school but without any trousers, and ET trying to phone home with a glowing red finger.

Just as I finally dropped into a deep sleep I was woken by a nurse telling me it was time to get up.

While the nurse from the night before had been generally chatty and good-natured, the one who ripped off the wires and patches with no mercy but plenty of my body hair, was clearly in a foul mood. The only thing I managed to tease from her was she was almost at the end of her shift and couldn’t wait to get away.

At breakfast one of the patients from another room complained long and loud about how a mask she’d been fitted with kept coming off every time she moved, and when it didn’t come off she couldn’t breathe, and how she’d spent the whole night continually calling a nurse to her room to rectify it.

I had no problems guessing which nurse had been “rectifying” all night.

Despite being the first to be unplugged, the first to turn up for breakfast, and the first to clean my teeth, I was the last to be seen by the doctor and wasn’t allowed to leave until I had done so.

She looked at the sleep diary I’d kept for the past 2 weeks then looked up at me with warm, sympathetic eyes. “Why are you sleeping so badly?”

“Um, I was kind of hoping you might be able to tell me…”

“Well I’m afraid there was nothing obvious from last night,”

“Nothing obvious?”

“Well no one had to come in and resuscitate you at any point. So this means we’ll have to thoroughly analyse all the data and see if there’s anything hidden in there that might reveal something useful. It should take no longer than about 4…”

“Hours? Days? Weeks?”


At least it didn’t rain during the 100mile drive home from Edinburgh.

Tuesday, November 25, 2008

Travelling at the speed of life

Mid afternoon: I’m slouched on the sofa drifting in and out of consciousness. Noises from outside and around the house merging and separating from random thoughts, images and dreams. I hear Maggie approaching with mugs of coffee so I sit up, stretch, drop back into the cushions and try focusing my brain.

I sit quietly, gently sipping the nectar, feeling it massaging my muscles, blood vessels and brain as the caffeine coaxes me out of hibernation.

The front door slams.


Rogan kicks off his shoes, drops his school bag with a thud that rattles the walls and stomps down the stairs, already in conversation and talking at us with energy and enthusiasm.

I watch him as he tells us about something that did or didn’t happen at school; constantly moving, animated, alive. I feel like a sloth watching a hummingbird, wondering how anything can be so active and not spontaneously combust.

Then he’s bouncing back upstairs to get himself a snack while my assaulted eyes and brain wonder what hit them.

But something is nagging me. I drain the last of my coffee and allow the thought to surface.

“Was I ever like that, before the Fatigue?”

“Most of the time,” replies Maggie.

I don’t know if I’m more unsettled by the idea I was, or that I no longer am.

Friday, November 21, 2008

Siblings, photography and cake

My stepdaughter, Holly, has been down visiting us this past week. She was 4 when I first met her; she’ll be 23 next birthday.

I thought it might be worth trying to take a photo of her with Rogan & Meg, so set up the lighting studio kit I bought a few months ago. Unfortunately there isn’t an area in the house big enough for a full lighting studio, and even finding the largest potential space still left much to be desired. With very little room to manoeuvre, furniture had to be pushed up against walls, boxes had to be stacked precariously and washing had to be strategically placed outwith the direct line of the lens.

I thought I would try and herd them into respectable positions and take a few dignified shots, suitable to send to relatives in the coming festive season. Unfortunately before my finger reached the camera, their true natures manifested.

Rogan and Meg especially tend to get a bit hyper when any of their older siblings come to stay, and this past week has been no exception. Holly is indulgent, patient and, when I come to think of it, seems to enjoy winding them up to fever pitch.

Last night, when I took Rogan and Holly out to the cinema to watch the new James Bond film, Meg made a cake for Holly to take home with her. She was very thorough and conscientious, and did it almost entirely herself, with only a little help from Maggie.

A vanilla sponge with butter icing centre, topped with pink icing, white chocolate mice and hundreds and thousands.

Holly left today. And while the house might be a bit quieter, it also feels emptier. There’s a Holly-shaped hole here at the moment, which we’re all feeling.

It’s a shame she took the cake with her, I could really do with a slice just now.

Thursday, November 20, 2008

Down Syndrome Barbie

What could be more natural than a girl having a doll she can dress up and accessorise and dream of becoming? Or is Barbie a very narrow, if not impossible ideal of beauty, which only reinforces the dissatisfaction girls and women have with their own looks and body shape? And is the idea of creating dolls with particular physical conditions a good or a bad thing?

Over on 5 Minutes for Special Needs, I begin to explore these ideas. Your thoughts, opinions and contributions to the debate would be appreciated.

So if you have 5 minutes to spare, do take a look at Down Syndrome Barbie.

And if there are comments you desperately want to express that would not be suitable there, feel free to leave them here :)

Sunday, November 16, 2008

Me vs The World

“Has it ever occurred to you,” my mother used to ask, “that perhaps, just perhaps, if the rest of the world disagrees with you it might not be everyone else who is in the wrong?”

Periodically I’ve wondered about this.

I did find it odd, for example, when I was in Canada people seemed to think that not only did I have a bizarre accent, but they had none at all. This was in complete contrast to my own opinion.

I’ve always found the idea of wearing football shirts when you’re not playing football a bit strange too. Especially when people wearing one kind of shirt feel obliged to intimidate or beat to a pulp, someone wearing a different coloured shirt.

Nationalism has always been an enigma to me. Why wave a flag to say I was born on this bit of rock rather than that bit of rock. And what’s that? You think we should go over to other people’s bits of rock and shoot them? No, no, I’m afraid your reasoning escapes me.

And even more peculiar, I am expected to show my support for athletes, pop stars or other famous people because they were born on the same bit of rock as me, even though I don’t know them at all.

Not to mention I was supposed to support the school rugby/ football/ cricket teams, despite the fact the aggressive bullies who were out to make my life a misery usually populated them.

Religion is a bit surprising too. There are far more people in the world who have some kind of unprovable metaphysical belief system than atheists. Indeed, more people in the world believe in reincarnation than don’t. If sanity is governed by majority reasoning, then all who do not believe they will be reborn must be insane.

Then there’s TV. Soap operas, game shows and “reality TV” all leave me cold, and yet they are the most popular forms of television in the country.

What about beauty? Why do so many people cling to one, narrowly defined definition of attractiveness, when we are surrounded by such exquisite diversity?

Having pets always seemed a bit weird to me. Oh I can fully understand using animals for work - sheep dogs, cart-horses, huskies etc - but parrots, hamsters and snakes? As I write this, a family have just walked past the window with a huge Irish wolfhound on a lead. I have to say they didn’t look much like Irish wolf hunters to me; the dad was wearing a Manchester United football shirt for one thing (and he didn’t look like he plays for Manchester United either).

Why would anyone want to buy an incredibly lifelike baby doll that “looks, feels and even smells like a real baby,” for £95?
Who collects Cliff Richard plates, “rimmed with precious 22ct gold”?
And do dog owners really have no sense of poetry?

The world out there rarely seems to make much sense.

Mind you, I’m the kind of person who tends to assume everyone has mental health problems, and anyone who says otherwise is just in denial. For that matter, I’m also always surprised to find anyone over the age of 34 who has never considered suicide as a rational option.

To me, of course, all my reactions are perfectly ordinary; they don’t seem weird, bizarre, peculiar, strange, mysterious, unusual, outlandish or eccentric. But in so many ways they appear to be at odds with general consensuses.

I daresay anyone reading this will agree with some and disagree with others, but very few will consider all my viewpoints exactly as their own.

This can lead so easily lead to a sense of isolation, alienation and even a fear of being found out to be different.

But that seems pretty universal: just about everyone feels they don’t quite fit in. And those who fear discovery the most are often those who shout the loudest about the need for conformity.

The fact is we all feel pain, excitement, fear, love, anger, happiness and despondency. What provokes any of these emotions is different for each of us, but we all feel them nevertheless.

So while I can go through times when I’m convinced I must have been exchanged at birth by aliens doing some kind of experiment to see if I’d notice, I content myself with the fact everyone feels this way at some point in their lives.

Wednesday, November 12, 2008

Avoiding Expert Advice

I’ve just been reading “Professional Photographer” magazine (UK). I was hoping to get hints, tips and insights into improving my photography, especially as I’m giving serious consideration to setting up a part time business, which would allow me to work around my Fatigue.

Did it inspire me?

Did it hell.

After reading a few articles, a couple of reviews and an interview or two I was ready to throw my camera in the bin, stuff my face with chocolate and/or slash my wrists.

Unless you are an award winning, internationally known photographer, using cameras that cost in excess of £10,000 and lighting equipment worth triple that amount, then clearly you are nothing other than an inadequate pretender.

I should have known better.

When I used to run my web design consultancy business, I subscribed to a magazine called DotNet, which was full of everything the professional web designer should know.

Except all it did was make me incredibly depressed. Slowly piles of unopened magazines rose in my office, glaring at me, daring me to open them so they could show up all my inadequacies, telling me if I was true professional, I wouldn’t be intimidated, therefore I must be a faker.

But there are many different sides to web design, from coding to databases to graphic design to marketing strategies to understanding how to effectively integrate all these things with your business. No one is an expert in all these fields, so either you become a specialist in one or 2 areas and employ people, or strategically link with other businesses, who specialise in these other realms, or you try and do it all and come across as amateur in everything.

What this means is, no matter how expert you are in your field, a magazine covering all aspects is going to make you aware of just how much you don’t know.

So it is with photography. Are you a natural with people, objects or landscapes? Do you want your images to be perceived as art, tell a story, or report an event? Are you wanting to shout to the world “look at me” or make other people feel better about themselves? Do you like the technical aspects of lighting studios or prefer quick snaps? Do you like everything to be perfect in the single shot, or do you enjoy the process of manipulating the image afterwards?

Consequently, with a magazine such as Professional Photographer, even if you were an award winning, internationally known photographer, using cameras that cost in excess of £10,000, you would still feel inadequate after reading it. *

The only real way of keeping your confidence is to keep away from critics, pessimists, and (especially) realists.

Far better to be happy in your own world than miserable in everyone else’s.

*And I’m not even going to begin mentioning how I felt after reading “Men’s Health” magazine. How to get a 6-pack in 6 weeks - pah!

Saturday, November 08, 2008

An embarrassing illness

I can picture clearly my father yelling it was impossible to stop the car and my mother telling me to wind the window down and stick my head out.

I was 9 years old.

I still shudder to think what the car behind us must have thought as I emptied the contents of my stomach at 60 mph.

I used to get terribly carsick as a child, much to the irritation of my parents and my siblings. As one of three children I was supposed to take it in turns to sit in the middle of the back seat, but I would make such a fuss, my brother and sister had to share it, all the time thinking I was just faking.

I never got airsick, seasick, train-sick, or even carsick if I was in the front passenger seat; but stick me in the back of a car for more than 15 minutes and I would be overcome with nausea.

As an adult, the sole driver in the family and more than 22 years experience of sitting behind the steering wheel, I’d all but forgotten this childhood illness.

However, I’ve discovered it’s not a sickness I can confine to the dustbin of memories. It seems I still suffer from it.

And it’s embarrassing.

If I’m travelling anywhere with more than one friend I will always offer to drive, just so as to avoid having to mention it. Sometimes, however, people want to repay what they see as my generosity for shouldering the fuel costs and insist they drive.

Sooner or later I end up in a situation where I have to mumble, “er… do you mind if I sit in the front as I, er… get, er… sickintheback… ”

And I swear, other passengers give me a look like they think I’m faking it, and are swithering as to whether they should challenge what they see as this outrageous claim.

The other night I was given a lift to an event by a couple I’ve only met a few times. The husband was driving and there was no way I could possibly ask the wife to sit in the back.

I took a pair of travel bands – wristbands with a knobbly bit on them that presses into a point on the wrist, which apparently helps with motion sickness – and desperately hoped there wouldn’t be any delays in the 20-minute drive each way.

I managed to just hold out on the way there, but the drive back was appalling.

The road meanders up and down, and round sharp bends, this way and that and with the wild weather the drive took even longer.

My hosts weren’t talking quite loud enough so I had to keep leaning forward to join in the conversation.

No one else ever has the heating set at a temperature I’m comfortable with.

Had the journey taken 5 minutes longer, history would no doubt have repeated itself. Fortunately it was dark, so I think my forced nonchalance wasn’t scrutinized too closely as I climbed out the car and insisted next time I’d be more than happy to drive.

I’ve never understood the desire for a chauffeur. I know if I come into a whole pile of money, I’m buying a 2-seater sports car and it won’t just be a mid-life crisis purchase.

Wednesday, November 05, 2008

Barrack Obama and the normalcy of difference

Is the election of Barrack Obama good for just race relations in the US, or are there wider implications for the acceptance of difference?

I've penned (typed?) my thoughts over on 5 Minutes for Special Needs under the post,
Barrack Obama and the normalcy of difference.

Pop over and leave a comment there or here if the mood strikes you

Tuesday, November 04, 2008

Messiahing is someone else's job

One thing this ongoing Fatigue has finally driven home is I can let go of my Messiah Complex.

When I can’t maintain righteous anger for more than a few minutes without feeling exhausted; when indecision wears me out faster than making a wrong decision; when I’m overwhelmed with a sense of how insignificant I am; there’s not much chance of being able to change the world.

Maybe it’s time to let Obama give it a go.

Mind you, Palin has the fervour of one who believes she was divinely chosen...