Friday, November 23, 2001: Tonight, after a week in hospital, I get a new visitor. Something wants me. A black-sleeved arm slides around the door frame. He’s pushing through and part of me is curious to see him, part of me is terrified, but there is a cold logical part that is telling me this is a visual construct of death. He’s not a mythical figure with a scythe and a cloak, and he’s not about to play Kerplunk with me for my soul, but he’s death all the same. It’s a coded message to say hang on and don’t relax, keep fighting, but another part of my brain says now I’m talking b*******, and that makes me smile somewhere and the sleeve goes back behind the door. For tonight. TUESDAY: Hallucinations are funny old things. You don’t know what’s real, so you can never enjoy the few nice ones but are still scared witless by all the rest, which are hideous. These are some of the things that cause them: stress, disorientation, sleep deprivation, brain damage, dehydration, the withdrawal of massive doses of steroids too quickly, you idiots. The latter is called steroid psychosis.

I am demented with thirst and tormented by visions. I cannot see my children. I try to find their faces in among the horror show and my wife is now by my bed and despair cloaks me and I try to sob, but I can’t even do this, and I look into her face and try to see my children but there is nothing. Only a plastic doll’s face. A face with teeth. A melting face coming closer and now I am dry sobbing, heaving in the arms of Alidz Pambakian, my doctor, who has just come on duty.

Alidz told me recently: “By four o’clock that day I thought you might die. By nine I knew you would.”

Ha. Five A-levels, a medical degree, 47 letters after her name and she still got it wrong, silly cow. Still, she saves my life in a bit, so let’s cut her some slack.

I have a lesion deep in my medulla, the signal junction of my brain, the area that controls everything. I have been here in the Charing Cross hospital, west London, for nearly two weeks, virtually paralysed; but still nobody seems to know what it is or what to do about it.

There is general acceptance that I need to be on a ventilator. And therefore I need to be put in a coma. The question is – a big coma or a little one?

The choices work like this. A “permanent” coma can be induced with drugs. Most of the physicians argue that this would give my body, and in particular the thing in my medulla, time to heal.

If you want to be cynical, they prefer this option because it means that I can shuffle off the old mortal coil without any shouting and bleeding and fuss – the equivalent of taking ageing Rover out for one last walkies with his favourite squeaky bone and a loaded 12-bore. The other option is that I should be given an immediate tracheostomy – that is, an operation to insert and stitch a tube into my airway, just under my larynx. I would then be put on a ventilator, but be brought round as soon as possible. The argument here is that I would be conscious and perhaps able in some way to “fight” more. 10pm: I stop breathing. My lungs are overflowing with an infection and the coma debate is all a bit academic until they can clear them and get me breathing again.

I’m rushed somewhere – I don’t know where – to get “bagged”. Gerard, a kindly male nurse, takes over. A mask is shoved over my mouth, urgently. It’s attached to a thick green plastic balloon. Gerard’s squeezing the balloon and a lovely Australian nurse is telling me to keep breathing.

I’ll always love a Sydney accent. I would but there’s not enough air in each squeeze. I cannot move any part of me.

I must concentrate. This is hurting. I’m suffocating for sure now. I don’t know it yet, but I’ve caught MRSA – the superbug – in my left lung. So that’s collapsed. My right one hasn’t, but it is full of thick green mucus, my body’s own defence against infection having gone into overdrive.

“Breathe, Nigel. That’s it. You’re doing good. One more. You’re doing fine.”

Liar. Darkness. Early Morning: Doris “the Cutter” Doberenz – a lovely if strange surgeon of a certain age – cuts my throat and lets me breathe again by a tracheostomy. Doris never seems to go home. I imagine her haunting the hospital like a revenant, knives at the ready, always looking for something to practise on. But she’s good. Of all the invasive procedures I have done in that hospital, that was the most successful. There are often problems with discomfort, bleeding, infection or blockage, but my tracchy is perfect, textbook. I touch my tiny crinkled scar in my neck and thank you for it now, Doris.

To be sure that the tube she has stitched into my airway is in correctly Doris needs a delicate glass instrument – some kind of air-pressure thing. The hospital had two. Sadly they’ve lost one and a porter has dropped the other. The huge benefit of the tracchy is that you don’t have to have a big plastic tube down your gob. But because they haven’t got any glass things they shove a big plastic tube down my gob anyway.

I come round towards the end of the procedure to put it in. I am conscious, can hear, can feel but can’t move, can’t tell them to stop, can’t say that I can feel a tooth break as the retractor opens my mouth, can hear Gerard ask the anaesthetist if he is sure I am under. INTENSIVE CARE UNIT: I finally feel safe. It’s very warm, and there’s lots of subdued humming. I’m fed continuously and automatically through a tube and I’m in a nappy. That’s to make the nurses’ lives easier. They’d rather change a pair of absorbent wraparound pants at their convenience than, well, bring a convenience to you.

It’s very hard to concentrate in here because it’s like living inside a new fridge – white, whisper-quiet, but actually full of mysterious electrical noises. Lovely old Doris does the rounds, checking my tracchy and smiling to herself.

Another regular is a woman it’s hard to take to. Big, shouty, horsey. She’s the sort of doctor who reads your chart out to her acolytes before shouting good morning at you over your head.

I write her a note one day. It takes a while and I can see her junior staff watching. She goes on, declaiming loudly about my Sats, magnesium levels, white cell count, blah blah, until finally she turns to me, by now quietly holding up my pad. On it I have written in great big shouty letters: I’M DOWN HERE, AND I’M NOT F****** DEAF.

There is a pause. A junior doctor stuffs a rubber glove in her mouth, shaking; others are open eyed. She comes over the bed. She looms down, her big fat face next to mine. She gives out a horse whisper. But at any rate she says, “Feeling better today then?” and she rewards us all with a huge smile. Which I think is fair enough. She is less of a cow afterwards. Which goes to show.

Michele, my wife, realises that the doctors are only firefighting – treating symptoms as they come up and bite me on the bum, not getting to the heart of the problem and finding a cure. She knows they’re doing a great job in tackling each new problem, but also knows their knowledge and resources are finite. And one day they won’t have an answer.

There are by now 14 neurologists on the case. That’s hundreds of years of experience, based on millions of hours of the best medical research from clinical trials all over the world. And they’re buggered if they know.

Of the 14 eggheads, seven now think I’ve got a tumour. Because of its position, this will soon make me very mortem indeed. The other seven think this is just a one-off, slightly mysterious event. The seven fancying the tumour option think this is a cop-out and place bets that they are right. Either way, they all reckon, we’re soon going to know.

Except . . . except . . . they have a cunning plan, apparently. The procedure they suggest will work like this: I’m propped up in a bed and my head is put in a cage similar to the one at the end of 1984. But instead of adding a rat, they’ll ram a Black & Decker down into the top of my skull. I’ll be watching images on a TV screen and hoping they’re doing a better job with the drill than I did the last time I put some coat hooks up.

In the resulting hole, using a robotic computer-controlled wire, old Prof Aziz will root about at the back of my brain until he finds the medulla. He’ll dig about in there for a bit until he comes to the damaged area. Then he’ll grab a piece of brain and bring it out.

The problem with this technique – wait, I’ll rephrase that: one of the many problems with this technique – is that it’s insanely dangerous. Everything could be damaged if the wire’s fractions of millimetres out. Speech, hearing, sight, touch, movement. I’m told the risks: there’s a 20% chance of permanent injury of one kind or another, and a 5% fatality rate. That’s 20-1. I back 20-1 horses in the Grand National. Sometimes I win.

Next morning Michele is told of the biopsy plan and she’s not convinced. She phones my doctor friend Phil, who says something brilliant: “Always ask what the benefit will be to Nigel.” So Shell beards Dr Lane in his lair. He tells her the biopsy will determine if my lesion has been caused by a tumour, and hence stop the huge weekly rows between the 14 warring neurologists. What will change, she asks, if it’s found to be a tumour? Ah. Well, he admits, nothing. Cos there’s nothing they could do. I’d have had it.

So she presses the point. The practical advantage of this dangerous procedure is . . .

She calls off the biopsy. The medics agree to wait and see, because I’ll either stop getting worse or be dead in a few days. There’s no real third way and it’s becoming increasingly clear to Michele which side of the coin most people are betting on. So she decides to do something about it.

And what she does is extraordinary. Right, she says to herself, 14 of the country’s top neurologists have given up on Nigel. I’ll find one who won’t. And bugger me she does.

6am, Heathrow airport, a few days later: Michele is waiting for the man considered to be the world expert on brain diseases, Dr Patrick Kelly, to arrive from New York. He is flying to Stockholm to pick up some prize from an obscure body called the Nobel Institute, but after one telephone call from Michele he’s agreed to see her during his stop-over at Heathrow to examine my notes and scans instead of wandering off for a cup of coffee and a bagel.

In the process, of course, Michele has come up against good old British jobs-worth work-to-rule, we-do-it-our-way-whoops-another-one-for-the-body-bag bureaucracy. The hospital wouldn’t let her have my notes or scans. They weren’t her property, they were theirs. So ya-boo sucks. Turns out they were worried she might lose them.

She was dumbfounded. Lose them?

The details on her husband’s condition?

The stuff they needed to keep him alive? The hospital bosses held their legally correct, morally disgusting ground. By this point it was 8pm. Kelly’s plane was due to land in 10 hours.

So she nicked them. And at around midnight she crashed into the drunken, dying embers of a dinner party at the only friends of ours who had a photo-copying machine, to copy them – before heading off to the airport at around 4am. My uncle drove, partly out of kindness, partly because as an ex-copper he was keen to keep death off the roads.

So there they are, at the gate, watching the New York redeye disgorge its tired passengers. By now the plane is almost empty and Michele has bobbed up to a dozen startled men in smart suits, all of whom have backed away from this crazed little blonde thing.

Then there is a tap on her shoulder.

A leprechaun in a flat cap stands before her, barely reaching her chin. His stubby little hands jab at the notes. “Are they for me?”

So, by the light of the Avis rent-a-car sign this little, slightly railroaded surgical genius makes two pronouncements: 1. This is not a tumour. 2. If I’m wrong, and it is, it’s not inoperable. I’ll prove it by operating.

They shake hands; he says good-bye and scuttles off to get the next flight to Stockholm and sanity. The effect of his diagnosis on me is magical. It is the first good news. And there is a galvanising effect on the medical team. Blimey, I am worth saving. WE’RE entering the realms of experimental medicine now. Science fiction, almost. The machine that’s wheeled in looks more like a tea trolley, the love child of a milk float and an Austin Allegro. They’ve bought it off Del Boy, surely. They can’t really expect me to get hooked up to this piece of – oh. They’ve hooked me up to it. Via ugly, bloody tubes going into my groin.

Six dark-red milk bottles – a pint each – are ready to be put into me, at the same time as my own filthy, sick blood is taken out. My evil plasma is washed/centrifuged out, and good, five-star, BMA-approved, appellation contrôlée A-negative is gurgled back in.

Not to be too scientific, I think the idea is to calm down my hyperactive white cells by taking them on the equivalent of a holiday to Center Parcs. The entire procedure takes just under an hour. The first bottleful is removed/ replaced okay. There’s a slight ache in my left side. Shell and my uncle are here and I try not to upset them by going Ouch too much. The second bottleful makes my left side stiff and sore. I can take it. The third bottleful and I stop telling jokes. I start to shake. I snatch a look at Michele. She’s biting her lip. She sees me watching and smiles.

The fourth and my bones are cracking. I am being ground to dust. My uncle, a big old-fashioned man, looks like a child about to cry. He’s appalled. The fifth and I cannot speak because I’m afraid of the sound that will emerge. My body goes into spasm. The sixth and I am somewhere I did not know existed. I’m begging the operator to stop. Even Dr Matt, an uptight senior house officer who is the emotional equivalent of a Psion pocket organiser, is shaken. In an astonishing display of passion, he’s gone quietly white. He turns to the operator and tells her to switch the wretched thing off. Thanks, Matt.

For half an hour afterwards I’m held by Michele as I shake uncontrollably. Eventually I quieten. I’m given sedatives, painkillers, and the normal pain, the suctioning, the sickness, the headaches, the failing eyesight all seem like paradise.

Michele never lets me see what this does to her. She hides it for years, but there will be a time when I will hold her in the same way. As she suffers with the pain that will always be our pain.

I have six more of these procedures over the next couple of months. I always stop after the fifth bottle.

Instead of taking yet another predictable daily turn for the worse, I wake up one morning to find – Ha! The fingers on my left hand are freer. Okay, it’s not ideal – my fingers are bending the wrong way for a kick-off, but I’ve finally got their attention!

Michele waddles in. Before this hospital ordeal began she announced she was pregnant with our fist child. God, she’s already enormous and not due for four months.

I write my news on my pad. I try to show her my new trick. “You’re getting better,” she says. It’s the first time she’s said it. It’s the first time I believe it. FOUR months later: another hospital, but this time I’m not the patient, although by the time I get there I probably should be. It’s two days since I moved back home. I’m not better: I live on 500ml batches of Jevity (“Complete, balanced, isotonic liquid with mixed fibre and FOS”) from a drip.

What I need now is an IV of serious antibiotics, industrial painkillers, an oxygen mask, fluids and bed. What I get is a wheel-chair in a corner of the delivery room waiting for nature to take its – induced – course. Inside my love is our child and we wonder what has been done to him. The adrenaline, the stress, the physical effort Michele endured during my illness has somehow done what?

An hour has passed now and Michele is soaked with sweat and There Is A Problem. The child has grown so big, and Michele is so small. Oh God, I think, this baby, this thing that cannot be healthy because nothing I touch is healthy, is going to tear her apart.

I will kill my wife and my child. Yes, and then I will kill myself. And I know I’m febrile and my temperature is messing with my head but the stress of this, the utter despair as the lovely kind midwife frowns. I’ve seen that frown because I’ve been on the wrong end of so many frowns.

The child is alive, but in distress. The heart monitor says so. More wrong numbers. The seen-it-all midwife mutters. My baby is facing upwards. The wrong way. He is stuck in the birth canal. He’s trying to breathe. He’s suffocating.

I’m breathing for him like Michele has done for me so often, but neither of us can help. The lovely seen-it-all midwife is worried properly now but she takes my useless left hand and says: “Feel your daughter’s head.”

I am seeing the doctor rush in a tray of shining metal objects – hard, gleaming, inhuman – and he snaps on rubber gloves and my baby is dying and my wife is no longer here and there’s blood and it’s my blood pooling under her nails.

The doctor approaches but the seen-it-all midwife pushes him away hard because she knows something has changed and there’s a scream from Michele which is part anguish, part joy, and out, out, yes out comes a wriggling, living creature and she fought, she fought like her father and her mother, yes she fought.

And I have her in my arms. I have my – yes, my daughter in my broken arms and her eyes are open and there are 10 fingers and toes and two of things there should be two of and one of things there should be one of, and everyone smiles and the seen-it-all midwife laughs like a little girl, seeing life born fresh again. She is huge and she is pink and breathing and well, and though her face is squashed from the birth canal she is beautiful.

And Michele gasps: All right – is she all right?

And yes, I find my first tear and yes, I hold Scarlett in the hold I’ll never break and say Yes, my love, she is. And finally, triumphantly out of this we have something, someone perfect.

© Nigel Smith 2007

Extracted from I Think There’s Something Wrong With Me by Nigel Smith to be pubished by Bantam Press on August 27 at £10.99. Copies can be ordered for £9.99 including postage from The Sunday Times BooksFirst on 0870 165 8585

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