Fully aware under the knife
The neurologist cursed and threw something into the rubbish bin. “What’s gone wrong?” I asked nobody in particular.
Her face popped up.
“Nothing is wrong,” she said happily. “Why did you think something was wrong?” We smiled at each other, me and the angel. Stupid of me to have forgotten her name under the surgeon’s knife. Angel would just have to do.
Actually, I was under the surgeon’s drill. Drrrrrrrr ... drrrrrrrr ... drrrrr. It sounded like a hand drill, I thought idly. Not the dentist’s drill I had been promised. (Don’t move your head. You can’t move your head. Don’t think of not being able to move your head. Don’t think of it, don’t think of it ...)
The only difference this time, they had declared joyfully, was that my head would be put into the helmet, rather than the helmet placed on my head. Which made all the difference, of course, and no difference at all. (Don’t think of it, don’t think of it ...)
Let me explain. I made my decision last year to have the brain pacemaker implanted. For most of the 20th century, Parkinson’s disease had been treated, as a last resort, with ablative surgery — burning out a malfunctioning section of the brain as had been done, for example, to the actor Michael J Fox in the late 1990s. But about 10 years before, a team of doctors in Grenoble in the French Alps region, under the leadership of the neurologist Pierre Pollak and the brain surgeon Alim-Louis Benabid, had developed a new and less destructive technique known as DBS, or deep brain stimulation. In this procedure, an electric current is delivered to the trouble spot via a pacemaker buried under the collarbone. The operation is reversible and the results tend to be miraculous. Nobody is sure how or why it works, although there are theories.
The problem with DBS is that, for the trouble spot to be found, the patient needs to remain fully conscious. The Grenoble team are the best in the world at the technique, but being a research institution are also slow — 11 to 15 hours is the average length of an operation.
On an assessment trip to the lovely old town, set among the French Alps, one of the neurologists, a nice guy called Krack, had opened a lift door for me to travel between the ground and the second floor of the hospital. It was not a major thing for me, but it looked a bit like a coffin inside — that sort of burnished steel look.
Now coffins are for burying people, in my opinion. If a lift-maker does not at least offer the illusion of travel in roomy space, as far as I am concerned they would do well to go bankrupt and try a different line of business, like building coffins.
So I balked at the offer and declined the ride. A small incident in life’s panoply. But, as I was quickly to discover, in Grenoble every movement has significance.
We lay-people might not consider them to be a significant facet of human behaviour, but to a neurologist they assume enormous importance when detected. Take a walk with a top neurologist and you will quickly realise that he is focused, not on the gems of insight into sub-Saharan political life with which you thought you were entertaining him (or her), but how your eyeballs roll or whether your big toe is twitching.
So when, on that preliminary visit to Grenoble last year, I had hesitated at the door to the elevator, Krack had declared, triumphantly: “Aha, claustrophobia! We’ll have to do something about that for the MRI machine.”
He was referring to the giant scanner into which patients are slid, to the great discomfort of claustrophobes among their number. And that was that. I had been diagnosed.
The finding was quite correct, needless to say. I had, in fact, survived two trips into a MRI machine. But I did have a mildish form of claustrophobia that made me a bit more unhappy than other lost souls who might inadvertently clamber into a steel coffin masquerading as a lift. At the same time I was slightly reluctant to acknowledge the point. As a man who likes to be known as, well, if not exactly a war correspondent, then a foreign correspondent with a few “small wars” under his belt, it seemed to me to be a bit unseemly to be susceptible to panic about being enclosed in a not particularly small space like a lift.
So I returned to South Africa, after my “getting to know you” visit to Grenoble last year, determined to do something about it. What I had to do seemed fairly simple — accustom myself to enclosed spaces, and voilÃ . So I stuck my head under a particularly heavy coffee table we had at home. Soon I felt I had that little phobia mastered and moved on to what I saw as a related problem; in the form of what I thought of as the bolts.
In the early days of my wait for the Grenoble ordeal, it used to give me some satisfaction to inform the ill-informed that my brain operation would be conducted without benefit of anaesthetic, with my head bolted down, and that the procedure would last a minimum of 11 hours. The looks of horror and squeals of concern this announcement would trigger gave me some satisfaction.
After a while, however, my bravado began to give way to concern and I found myself questioning my “guru”, the Financial Times‘s Africa editor and doyen of the rat pack on the dark continent, Mike Holman.
“Holman of Africa”, as he is respectfully known, has lived with Parkinson’s for an extraordinary 17 years, and has had the (hugely successful) operation himself. “Uuuh, Mike,” I would find myself saying on the telephone to him, with much clearing of the throat. “Uuuuh, these bolts.”
“Yes, what about them?”
“Well, where exactly are they attached?”
“To your head,” he would say.
“Ahhh, yes. I see, of course ...”
Finally, one day, I got my courage up and, with the “no nonsense” tones of a foreign correspondent who has seen it all before, I cornered him.
“You know those bolts?”
“Well, you’ve got them bolted, on one side, to your head?”
“Uuuuuh, what about the other side?”
“Uuuuh, well, what will I be bolted to? I mean, presumably these titanium bolts are bolted to something?”
“Oh, to various things,” he said. But I had gone too far down the path now to be put off. “You mean I will, in the end, be bolted down?”
“In a manner of speaking. Ultimately, yes. They’re incredibly light, you know.”
“The bolts, they’re made of titanium. They cost about $200 each. It’s very important your head doesn’t move.”
“Ohhh yes, I can understand that. Ha, ha, ha, ha â€¦” I said, carefully replacing the receiver.
Either way, I must confess I was scared witless. Bolted down. Cautiously, I tried the words out. “Bolted down.” “BOLTED down.” “Bolted DOWN.” No, I realised, there was no other way of putting it. Bolted down was bolted down and that was that. You were either bolted down, or not. For 11 bloody hours. At least.
I have always suspected that my phobia was wider than fear of enclosed spaces and that the real problem was fear of restraint. I won’t go into it in detail here, but I knew from my reaction to the sight of men in shackles and handcuffs that I had a horror of forced restraint.
In fact, it was so embedded in me that, on one occasion many years ago, I was entertaining a young woman in a posh restaurant with a show of worldliness when I said, grabbing her hand: “Aha, a Claddagh ring — that’s from Ireland,” and absent-mindedly slipped it off her finger and on to mine, only to find it was stuck. I will pull the curtains down on the rest of the scene; worldly correspondent squawking, head waiter and sidekicks hurrying over with blocks of butter, hot and cold water and so forth and so on ...
Well, if it was more than claustrophobia, the solution remained the same, I reassured myself. Training, familiarisation. I was going to a gym by this stage, on the urging of a friend who saw a need for me to prepare for the coming ordeal. Or at least to be distracted from it. I had the proprietor of the gym tie my head down with straps for a few minutes and managed to convince myself it would all be easy in surgery.
So it was that on the day before what I thought of as Brain Day — the day I was to have various French surgeons of great distinction poking around inside my brain — I found myself being trundled to the basement of Grenoble University hospital for an MRI scan with what I suspect may have been a happy grin on my face.
Not only had I assured myself back home that my claustrophobia had been beaten and that being bolted down didn’t matter a fig, but I had had another quiet chat with Krack. He had explained that it was essential that my head be kept absolutely still during the scan; to make absolutely sure that there would be not a trace of a shake.
There was no shame involved. I just had to have a full dose of L-dopa and two of liquid Valium before I went into the MRI machine. So, who was I to quarrel?
It was with considerable confidence, therefore, that I headed for the lair of the MRI machine, in the Grenoble hospital basement, only to find a young man awaiting me who spoke very good French until he heard mine. “Ah, well that makes it easy,” he said with an unmistakably American accent.
This was Brad.
Let me be clear from the outset. I have no prejudice against Americans. As I have had occasion to observe before, the world is — at least in my belief — fairly fortunate in its choice (if choice is involved) of modern imperialists. They strike me as not too bad as imperialists go. But one prerequisite for ruling the world is, of course, self-confidence. Brad, bless his soul, had oodles of it — oodling out of every pore.
I had, of course, heard of Brad before. A surgeon from Florida, I had been told, had attached himself to the Grenoble team to learn the technique of the Parkinson’s operation. But somehow, until I met him, I had not expected him to be so young, so busily efficient. And so bubbling over with bloody confidence.
Brad had confidence in aces, spades and any other trumps a card table might care to designate. In seconds he had me out of bed. “Here, we’ll just use this,” he cried out, bundling me into an office chair on castors. He scooted me into the MRI room. “I’ll just screw this on,” he announced, busily screwing the helmet that was the stereoscopic frame on to my head.
“Aaaaah”, I said, trying to raise myself from my throne with one finger waving in the air. “Aaahhhhh”, I repeated, Ozymandias trying to reimpose his authority on the landscape. “Claustrophobia!” I squeaked.
Brad would have none of it. Slam, bang and I was on my back. Click, clack and the grill that was the MRI helmet was shut. “It’ll all be over in a moment,” said Brad cheerily, as the motors began to whine and the MRI carefully lifted me, ready to slide me into its steel womb. “Here, you can press that if you have a problem,” pressing the emergency button into my by now limp hand. I heard the patter of feet as he hurried to the control room.
In my defence I was prepared to have a go at it. But I knew that without the L-dopa I did not have a chance of maintaining at least the minimal stillness required by the massive magnetic camera. Sure enough, no sooner was I in place than my right arm began its pathetic waving. Bang, bang, bang, it tapped against the steel wall ... bangity bang. An incredulous silence came from the control room.
Another patter of feet and an anonymous hand grabbed mine, gave it a reassuring squeeze and pattered off again with an air of confidence, a job well done. Bangity bang. There was another incredulous silence. The anonymous hand came pattering back, squeezed and departed. Bangity bang, went my hand, hopelessly.
A loudspeaker clicked on and a voice made a declaration in French. It could have been an announcement of an outbreak of fire so far as I was concerned.
I clutched the emergency button, briefly contemplated my hard work under the coffee table at home and then — with the abrupt thought, ah, fuck it — abandoned the hopeless struggle and, with a short prayer that it was not a dummy, pressed the emergency button.
I was bundled out with impressive alacrity, and, ensconced once more on my makeshift throne, scooted into an anteroom.
“Just get me Dr Krack,” I said wearily. Half an hour later, with Krack’s comforting hand on my shoulder and a cocktail of L-dopa and liquid Valium sloshing around in my blood, I made it through the MRI in a chemical haze of happiness.
And so it was that, after reassurances that the only difference the next day would be that my head would slide into the helmet, rather than vice versa, I anxiously awaited what Pierre Pollak, the chief neurologist, had assured me would be the longest day of my life.
As it turned out, the ordeal was not quite that bad. The longest day in my life was a double marathon I ran as a teenager in South Africa as the result of a foolish debt. I did finally stagger across the finishing line with some 14 minutes to spare, sat down in a beer tent and had myself a couple. When I tried to get up my leg muscles were in spasm and I had to suffer the humiliation of being carried away by course officials in a sitting position, which was to last three days. The pain was indescribable; suffice to say, never again.
The Grenoble operation was not quite as bad, although — the main coping mechanism being denial — much of the memory of it has no doubt been lost. Being bolted down in the helmet was rather like being pinned down to the table like an ant by a massive thumb. The question of whether it was the thumb pinning me down, or me being pinned down by the thumb seemed to be an issue of massive irrelevance in the circumstances. The point was that I was pinned down, for something like 13 hours.
If several aspects of the operation are lost to memory, some may have been invented by a fevered brain. Did the neurologist curse in the middle of the proceedings as he threw what I was convinced was an essential working part into a nearby rubbish bin? But I do clearly remember lying there in a state of misery, trying to imagine what had gone so dramatically wrong.
When it was all over and I was unbolted by Brad and wheeled away, I found myself weeping. Brad, bless his soul, could not figure that one out. “But it is all over,” he kept repeating. “You’ve done it!”
I couldn’t find the words to explain to Brad that the operation was nothing, just like the drama of the MRI machine was nothing. I was weeping at what had driven me to them: 10 years of living in another country known as Parkinson’s disease.
The neurologists keep reminding me the operation is not a cure. The reminders are necessary because it certainly feels like a cure. The shakes have all but gone and with them the L-dopa tablets and their dreadful side effects. Even if it is a journey that is not over yet, for now, at least, it feels nice to be home. — Â