Thursday 28 October 2010

The real story

The girl stood on the burning bridge.
Her lip was all a-quiver.
She gave a cough; her leg fell off
and floated down the river.
           child's rhyme


Okay, so forget all that 'woe is me' nonsense. A dose of reality. Here's how it happened.

It was an autumn day. Carol was taking the train through town and country, through October landscape, through tree-heads tinted copper and gold, to New Lanark. She was heading for a conference of the OU Arts Fac in the lovely New Lanark Mills Hotel. She passed the new mosque at Holytown and was impressed with it as an object of beauty; she passed over the river gorges and through the site of the former Ravenscraig steelworks, now a forest of young trees; she passed through towns and farmland until Lanark, whereupon she took a taxi down into the river valley where Robert Owen and David Dale had built their massive cotton mills in the early 1800s,  providing for their workers a self-contained village with arts and education and quality of life for when they weren't required in the mighty river-fuelled mills.

The hotel was plush and yet homely. Colleagues were bright, not seeing one another from one year end to the next (all teaching work being done by correspondence or online). The tea tasted strange and Carol felt hungry but she'd had an early lunch and anyway, some chocolate bought at the village shop at closing time would help tide her over till dinner.

The sessions presented held her interest. She particularly enjoyed the 45 minute poetry reading, slides and chat by Chris Powici, a colleague in the creative writing courses and editor of the free magazine 'Northwords Now'.

The chocolate tasted funny, even though it was well within its sell-by date so she only had a few squares and then, during the quiet time before dinner, she took a walk alone around the grounds of the hotel and village. The pavement was wet with autumn rain. Dark evergreens and dying deciduous clothed the hills on either side of the river. She watched how the water pummelled down over the 'linn' waterfalls. White froth on black substance. The river vibrated through the rocks beneath her feet. The air was cool and moist but not uncomfortable and there was a lushness in the dank decay of pine needles and autumn leaves.

Dinner passed off well in chirpy conversation. The soup tasted a bit funny and she wondered if there was wheat in it. She regretted stipulating only 'gluten free' and not also 'wheat free'. She was hungry and ate every spoonful, having given away the bread. The fish came next. The food all looked so tempting, artistically set out on the plate and attractive through colour and texture. There was a bit of a strange flavour going on in the fish but everyone else was eating and she ate it all, too.

Buoyed up on two glasses of wine and good conversation, she climbed the stairs with the others and enjoyed the evening session in the conference room, where line manager Elaine entertained and informed about Aird, an 18th century Glasgow-based music printer. Thereafter, Carol went to the bar with Chris and Carol A, and both Carols caught up with chat in a table to the side (thanks for the malt, Chris - that's two I owe you).

On the way to bed, her stomach felt uncomfortable. Maybe the fish had tasted odd because there was a little shellfish sauce? Or maybe it had been the soup?

At three in the morning, Carol was sick. Everyone's been sick. Everyone knows what night-time ill-health is like and everyone gets on with it. So did Carol. But her arms and legs were so weak, now. She almost couldn't make it back to bed. And then, in bed, she almost couldn't make it out again. And the phone was dead. Something wasn't right.

Outside, in the darkness, the river pounded its way between the banks, cutting off the little island and dragging at torn-off twigs and branches.

By 8.30 on Saturday morning, Carol knew that something was wrong. She'd known for a long time. Now, she wanted to go home. She had no mobile signal in the valley and the direct line to the outside world wasn't working. Besides, there was her baby grand-daughter at home and if Carol had food poisoning, or a virus, she didn't want to take it home. But she wanted Keith. So she phoned reception and asked if anyone else had been sick. But no-one had. It wasn't the food. So she asked for an outside line and told Keith she needed him to come for her.

It was nearly an hour before he arrived. She almost fainted when she went to the door to let him in. Back in bed, she almost couldn't move. He helped her dress then on her insistence he fetched a wheelchair from the hotel staff. It felt ridiculous to make such a fuss over sickness but this wasn't right. She knew it. It wasn't normal. But what could it be? Food poisoning? Winter vomiting bug? No-one else was suffering.

Keith wheeled her to the car and then went back to sort out bills at reception and to leave a message for the conference organisers.

Carol slept for two days. All through Saturday and most of Sunday, while Keith and the others went to Glasgow to paint the new flat, Carol slept. She woke and slept again. It felt like a hundred years. She asked for water with sugar and salt in it and then fruit juice and tea. The two days passed.

Get a grip, she told herself. You've been sick, now get over it. She forced herself to get up late Sunday afternoon. She made herself a mug of chicken stock and felt better for it. She took it back to bed with her. When the others came back, she said she'd take some dinner. She ate a few mouthfuls. She sat up with them for half an hour then had to lie down again. She tried again later, picking at another few mouthfuls and staying up for an hour before going back to bed and sleeping through till morning. Almost peacefully. She must be getting better. It was only logical. She'd eaten; she'd sat downstairs with the others.

But it wasn't normal. At five in the morning, panic speared her. All down - inside - both legs were tingling. She'd been aware of it earlier and had changed position but now it was stronger. Her legs were leaden and tingling. She could move her toes. So there was no need to panic. She sat upright on the edge of the bed and her arms were tingling, too. This was something she'd no experience of. Her body felt normal but her arms and legs were losing power. Keith said she'd been lying awkwardly. Lie down and go back to sleep. But it wasn't normal.

Keith's alarm went off at 6.30 and she was sleeping. He brought her tea. In the dark, when he'd returned downstairs, panic pierced her again, waking her fully. Her legs had gone. She couldn't feel them. As if the blood had drained out of them. Her arms were blunt as if her hands had gone. She couldn't move them. Well, she could if she exerted her will to do it. The skin round her mouth was numb and tingling. Her neck felt strange. Keith would be leaving for work. She had to stop him. What could it be? Botullism, e-coli, food poisoning. All the thoughts rushed through her. Addison's.

Addison's?

She'd read about it two weeks previously. She'd been trying to find out a connection between low blood pressure, weariness and coeliac disease, all of which she had. Yet the doctors had told her they couldn't find anything wrong and the coeliac was under control. She knew Addison's - and e-coli - were life threatening.

She listened; the baby was awake. She wouldn't disturb her.

Keith! she shouted. Keith! Keith! Keith! Keith! Keith!

He ran upstairs - she heard him. She batted him with blunt arms to make him move, to make him listen, to make him get her an ambulance. Confused, he couldn't believe her. Told her to calm down.

Get me an ambulance! I want to go to hospital!

But what'll I tell them? What'll I say is wrong with you?

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

He phoned the doctor. NHS 24 eventually sent round an ambulance because between them all they thought I'd had a stroke. My speech was slurred. The paramedic arrived and pricked my finger, soon determining that my blood sugar was low - 2.8 when the normal range was between 4 and 7 or so. Like in a diabetic hypo. He gave me a tube of sugary gel to suck (I could make a whole lot of little fairy tale and other suggestions from that little scenario but let's not go there) and I perked up a bit. The tingling stopped.  Two ambulancemen wrapped me in a blanket and took me downstairs in a chair, out into the new day's light to the ambulance, which was waiting there, cream and green against the blue cloud-streaked October sky. Children waited at the corner, thrilled at a break in the routine of going to school.

A and E at Hairmyres was jumping, filling up with doctor's Monday morning referrals. I was seen immediately then stabilized and put in a corridor. I would have waited in that corridor for ten years and have been happy. The registrar and consultant diagnosed me. 'Do you always have such a good tan, Mrs McKay?' 'Well, I spent the whole of July in France but that's two and a half months ago and my tan keeps getting darker.' I remembered peering at the whites of my eyes in the mirror, wondering if I was going to turn yellow and die of liver failure like my mother. Keith stood by my hospital bed, reluctant to leave me. 'I should've listened to you. I will from now on,' he said, voice shaking.

Addison's Disease. An auto-immune disease (i.e. like coeliac, thyroid and others) in which the body turns its immune system against itself. In this case, my adrenal glands were targeted. By the time an Addison Crisis happens, the cortext around the glands is 90% destroyed. The adrenal gland cortext supplies the body with steroid hormones that regulate defence against infection and other functions basic to life. Mine were now 90% depleted.

I had two injections of steroids and sparked instantly to life. I couldn't stop talking. I talked all over the registrar when she was testing me to see if the shortness of sugar and oxygen in my limbs had caused any damage. I couldn't find the tip of my nose to touch it. And I have a big target! Since that day, I've been practising!

So now I need to take these tablets if I want to live. My natural life ran out on that Monday morning, 18 October 2010. My life now is artificial. It's my old body but it's not my electricity that controls it. I'm lifeless. I'm a construct; a creation; a monster. But a cuddle still feels like a cuddle. A conversation with family still feels like a conversation. The steroids are making me crazy (bipolar mood swings). But I'm still me. And I'm born new again.

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


Carol would like to express her thanks to the staff at the wonderful New Lanark Mill Hotel, who showed her such kindness during her illness.

Wednesday 27 October 2010

Growth cycle

O Rose, thou art sick!
The invisible worm
That flies in the night,
In the howling storm:

Has found out thy bed
Of crimson joy:
And his dark secret love
Does thy life destroy.
            William Blake. Songs of Experience. 1794. 'The Sick Rose'

On Monday 18 October, 2010, my natural life ran out. A paralysis of weakness floored me; my legs and arms were not my own. By degrees, deadness moved from my feet, to take my legs, my hands, my arms, and teased filaments of numbness into my brain and jaw. If not for immediate medical help, my life would have ended that day, electrical power slipping away from me.

I have become a monster. Maybe I always was. I have become a monster powered by an electric charge which is not my own because my own ended: my body was no longer able to sustain it.

Within an hour of being taken to hospital, artificial life surged through me, rippling and crackling as the juice from two hypodermic syringes lubricated my circuits.

Electricity is a flower. Within an hour, new life bloomed through my arms and legs as the water of life irrigated my dry fields.

From that day, I'm not me. I'm a construct: an artificial life force of measured proportions, restlessly contained in decaying flesh and blood. I look at my hand. It's detached from me. It's part of the body I used to inhabit. An act of will moves it. I have to reconnect the life I've been given with the flesh I used to have. I can learn to do this.

But there are doubts.

I'm not me. I'm a Gothic monster created, not through the efforts of an inquisitive, solitary scientist experimenting with lightning, but through the perceptiveness, skill and commitment of medical teams based in Hairmyres Hospital. Good people, from the paramedic and ambulancemen who gave me first aid, to the highest consultants fusing with me through barrierless eyes, to the ordinary workers in all the wards, doing all the cog in the machine jobs, who took care of me.

And through the wonderful support of Keith and my family.

I'm not me. Not the me I was. But I am.