The virus that ate my brain

I have been grumpy all week and I'll tell you why. In no particular order: my conservatory roof is still leaking despite months of expert work from craftsmen who skilfully extracted all the money from my wallet six months ago; my wife is still away on business because her career is apparently more important than, say, making me cups of tea; my house is now worth about 4p, although my mortgage is bigger than the Guatemalan national debt; my dog thinks he's in The Great Escape, and after a fruitless four-hour search in the rain, slunk in last night with a big grin, smelling of fox sexy time. I'm not going to mention my Mastercard débâcle where I'm unable to pay late payment charges on the closed card because I closed the card. If I talk about my VAT problem I'll combust over my creaking laptop. And my fantasy football team is already bottom of the league. Oh, and I had to get up to write this as opposed to, for example, spending the morning pottering.

And then I remembered: it's disappearing. Not the effects of the illness, the disability that quietly informs my life every moment, but the huge lump of pain and fear that has inhabited my head since 15 November 2001. Just after breakfast.

The day before, I woke with numbness down my left side: foot, arm, tongue. I tried to put it down to "sleeping funny" but sleeping funny on my tongue? So I tried the GP's surgery where I found a locum who looked like KFC's Colonel Saunders and appeared to have as much concern for my welfare as the Colonel does for a Rhode Island Red.

He sent me away to see what would happen and what happened was this: the following day I spent the morning falling over and throwing up, despite the fact I'd not been to Glastonbury or the Edinburgh Festival for years.

My wife, Michele, drove me to get an emergency MRI scan on my brain. She drives pretty sharpish when she's late for Law and Order: Special Victims Unit on TV; on that day she drove like Lewis Hamilton on crack.

They found a brain lesion so big that the radiographer asked to see the body of the deceased. He was told to keep his voice down as I was sitting just three feet away Michele/Lewis rushed me into Charing Cross Hospital in central London.

Something like a virus was eating away the protein sheaths – myelin – from the nerve cells in my brain stem, my medulla. The medulla is the signalbox that controls the automatic signals from your brain to your body. If those signals can't get through then you can forget about doing all those little hobbies you enjoy: eating, walking, seeing, breathing. Those things. Within a week, everything had stopped working; everything except my lungs and my heart.

Then I somehow got MRSA in my lungs and they stopped working as well. One emergency tracheostomy later and I woke up in intensive care hooked up to a ventilator and eight other machines. A doctor friend commented helpfully that nine machines was ok. "It's 10 machines that means you're dead."

At one stage 14 neurologists were working on my case, doing various procedures of varying degrees of unpleasantness while agreeing only that I was going to die and that the canteen food was rubbish.

Now studies – real ones, not ones I just made up because my internet access is playing up – have proved that having caring relatives by your bedside improves your chances of pulling through. This is not only because of the positive vibes, it's because mistakes are made in your treatment.

Say 99 per cent of the things done to you each day are perfect and you have a hundred things done to you. That means there'll be one mistake. Per day. And relatives are good at spotting them.

Michele, who was pregnant with our first child – a child we silently, awfully hoped would survive this stress – and looking like a weeble who'd swallowed a spacehopper, asked questions, badgered, hectored, seduced and cajoled. She also ensured whatever was being done was firstly correct and, secondly, had a direct bearing on my treatment. Because doctors are a nosy bunch and they like to do stuff to you just to know.

Michele showed me just what real love was. She fought harder than I did to keep me alive. She massaged my twisted left side, she researched new treatments, she hunted down experts – one she made stop over from New York, poor sod – and she never, ever gave up. This was love.

And my baby was born and she was perfect, and I would need my family in the years that were to follow and the years I know are still to follow. Because it turned out these experts were only right about the food. After a few months I started to get better. Which, oddly, was where it got difficult.

There's a big difference between fighting for your life and fighting to have a life. The first is easy. You don't want to die, so you fight. Plus the NHS is generally very good at keeping you alive. Or maybe it really was the Lourdes water mum swiped from the bedside table of some old bloke who'd died (the logic being that if it was 50 per cent effective, I was on to a winner).

You do get glimpses of the future when you first go into hospital; the stripping of your dignity. The bumless gowns, the catheters, the plastic-wrapped needle packs, the cardboard vomit dishes, the disinterestedness, the machinery of it all. Nappies, because it's easier for nurses to change them than give you a bedpan. The painful mechanical hoist that can be operated by two people to save manpower instead of the four physios it takes to comfortably lift you from the bed. You see a sort of life beyond a hospital, a life of disability, of "rehabilitation", a life as someone different, someone worse.

The first shock of it came when I was put in a chair. The weight of gravity was crushing. I felt like I was 110 years old. I was Joan Collins' granddad. Lying down, I could pretend I was all right, just a bit peaky, but the first moments sprawled in that chair, my first glimpse of the fight ahead, of how smashed I was, that unmanned me.

Then, months later, I experienced a neuro-rehabilitation unit, a damp bunker of a place in which we huddled, the poor folk struck down with brain injuries. And struck down further by the attitude of some of the staff who-liked-to-talk-to-you-very-slowly-dear. They only tried that with me once. I soon got a reputation like that of Jack Nicholson. No, not in Cuckoo's Nest. Jack in The Shining.

Credit to the physios. They're as bloody-minded as I am, and they heaved me about until I was the only person in the history of the unit to leave a wheelchair and not get back in, even if I then zimmered my way around like a snail with a bad foot. Thank you all.

There were a few rehab delights, especially the young likely lad who'd had his frontal lobe kicked in. The frontal lobe is your little policeman, stopping you from saying the first thing that comes into your head. His was on holiday. The staff hated him. I thought he was great. My pregnant wife waddled into the gym one day to laugh at me on an exercise bike. The lad clocked her and made a comment that, though not entirely suitable for publication, made me very proud.

And I learned through this that when your body fails and you are at the mercy of the sometimes brilliant, sometimes uncaring, sometimes cruel healthcare professionals, you need to find the essential you under all of it. Money, power, career: all this will be stripped away, and unless you know who you are, who you really are, you will be lost.

And without people around who will fight for you, you will be lost. And what a waste that would be. What a damn waste, for thousands, that is.

I've been home for years now, with a limp, a feeding tube in my stomach, pain, dizziness, dodgy eyesight, a carer, a happy family, work and a sad inability to play the Hendrix guitar solo to All Along the Watchtower – no change there – but most days my glass is way more than half full.

And, yes, there's still the leak, the credit thingy, the escaping dog, the mortgage, the fantasy football league, the Mastercard idiocy, the missing missus, the VAT man and the reduction in quality pottering time.

Normal life, isn't it bloody great?

Nigel Smith's book 'I think there is something wrong with me', published by Bantam Press, price £10.99.

What is a brain lesion?

A lesion is any area of tissue that appears to be abnormal; a brain lesion is such tissue on the brain and can take many forms, including tumours and lymphomas.

How can a brain lesion be diagnosed?

Lesions will show up on MRI scans, although this imaging is not specific enough to explain the cause or significance of the lesion.

What causes them?

A large number of other complaints result in brain lesions, including high blood pressure, strokes, multiple sclerosis, brain injuries or other brain ailments such as tumours (benign or malignant) or hydrocephalus. Severe migraines, vitamin B12 deficiencies and some inflammatory disorders may also lead to abnormal patches of tissue.

Are there any warning signs?

Dizziness, fatigue, numbness, tingling, blurred vision. These symptoms in themselves do not necessarily mean you have a lesion, but none should be ignored.

Sophie Morris