by Nick Duerden
By our fourth session, my confusion over what exactly may or may not be happening here is bleeding into nagging doubt. She tells me about extended trips to India, to yoga retreats, and she tells me about the former boyfriend she used to call Bilbo Baggins for reasons I fail to grasp, and as she talks and talks and talks, she places her fingertips, then her hands, and then her arms all the way up to the elbow on various parts of my prone body, and lets them rest there awhile. ‘Do you feel the warmth?’ she wonders.
Twelve sessions, she says, and then I shall start to feel some benefit. When I get home, I work out what 12 sessions will cost me. Elena asks if it is helping. ‘Do you feel any better, any different?’ The truth is that no, I don’t. I am engaged by the woman, she fascinates me, and as life experiences go, this is undeniably a six, maybe even a seven, but I have little real understanding of what she is doing to me, or to what effect, and I am becoming impatient, too. There are, after all, approximately 464 other treatments I could be investigating. I might be wasting my time here when I could be spending my energies – a loaded word, these days – elsewhere.
Eleven
It is from a man called Ashok that I learn about something in the brain called the amygdala. It’s tiny, located in the temporal lobe, there behind the ear, in the shape of an almond. It is most commonly associated with the fear response, and for those suffering chronically from fatigue, the thing is in perpetual overdrive. The American neuroscientist Joseph LeDoux has written extensively on the subject, and so it is him I contact for an interview. He responds with disarming immediacy, within a minute, declining my request.
According to LeDoux’s writings, it is much easier to study fear than it is other emotions. As I have already learned, things that are bad have more impact on us than things that are good. He suggests that you can put such things as eating, drinking, even sex off for an indefinite amount of time, but fear you cannot. Fear you have to respond to immediately. The amygdala gets sensory information from the external world, from touch, taste and pain. When you encounter danger, you experience the fight-or-flight response and, thanks to the amygdala’s efforts, blood pressure increases, the heart rate rises and stress hormones are released. It’s a warning button, effectively, acting like that red cord in a public toilet all too carelessly pulled over and over again by people confusing it for a light switch, prompting baristas and train guards to come running.
But pull it too much and it doesn’t retract, it remains over-stimulated and on a perpetual boil, forever convinced more threat is imminent. By which time it has created Pavlovian association: we are forever on the lookout for the stimuli it considers the most dangerous. And once we fall ill in this fashion, we remain so.
What certain alternative practitioners strive to do when attempting to treat chronic conditions is to quieten the amygdala, to teach the sufferer to metaphorically put an arm around it, treat it like a friend, pop a cigarette in its mouth and tell it to calm down, there’s no danger here. Ashok Gupta is one such practitioner. His programme is remote, accessed via DVD and live weekly webinars.
Initially I consider contacting him for an interview, but I’m having little luck in my interview requests, so instead pay the fee and await my package. (I do eventually email him requesting an interview many months later, and he agrees. But the day of our interview comes and goes without further word from him.)
The package arrives on a Saturday morning. Amaya rushes to receive it from the postman. She rips it open, and out tumbles a DVD and CD boxset, alongside what looks like a large poster folded up into a manageable square. I unfold it to reveal a floor mat upon which read the words The Amygdala Retraining Technique™.
‘Amy-g. Dala,’ Amaya reads, haltingly. ‘What does it mean?’
It has a big circle on which to stand, and off it shoot arrows, one red, the other green, one pointing towards Unwellness, the other towards Health & Happiness. Along the latter are further circles on which to stand, and that read, respectively: Start, Breathe, Future Self, Reflect & Choose, Decision Making, Visualise Health.
Evie joins her sister in looking confused. My self-consciousness ramps up.
‘Work,’ I say, folding it back up again.
I take the whole lot with me upstairs now to ‘work’, close the door behind me, sit at my desk, and begin.
The opening section features Gupta sitting doctorishly at his desk, a smile on his face. His thesis is that the amygdala plays a key role in the world of CFS. He quickly admits that we will find contrary evidence online (and I do), but explains that if we are going to follow his advice, we must do so fully, without the clutter and din of competing voices. Do not bother wasting your time with further visits to your GP, he suggests, ‘unless they are particularly sympathetic. There is probably not a lot your doctor can do, in any case, unless you have other, secondary conditions which might require medical treatment.’
Because the amygdala’s role is largely to decide when something is threatening us, and then to release an appropriate response in pursuit of protection, it is this, Gupta says, that we must focus on exclusively: controlling the amygdala itself. The brain can be rewired, reprogrammed. To do this, we need to stop all negative thoughts from filling up our brain, and instead lead it on another path, away from Unwellness and towards Health & Happiness. To do this, we must give the programme our unswerving focus, and prepare for an awful lot of repetition.
This is not therapy, he adds, but rather a process of retraining. This will allow me to feel in charge of my recovery and my training, because no one else can do it for me. “This can now be your responsibility,” he says, pointing out that the word ‘responsibility’ comes from ‘the ability to respond’.
Where the OHC asks for 90 days, Gupta demands six months. ‘Make a commitment to yourself now,’ he says, ‘to give it 100% for six months.’
He wants us to embark upon a daily programme of work. This involves repeated viewings of the DVDs, and listening to the CD, and going over the accompanying booklet for greater clarity and, later, tuning into his weekly 90-minute webinars. These take place on a Wednesday evening, and in them he will develop his thesis and also update us on all the latest research. In turn, we will have the opportunity to pose questions the length of a tweet (typed into a box onscreen) which, if time permits, he will offer short answers to.
The six months sounds to me like a big investment, but the depth of his demand works in its favour. It makes you take it all the more seriously. That first impression I had of him – that here is a man I might trust – is compounded throughout my watching of the DVDs. And by trusting in his methods, I find I am starting to believe in myself. He clearly knows how to engender confidence in his work: he offers a full refund after six months to any of those who believe it hasn’t helped.
The objective is to help us rewire our brain, to rid it of its recently developed bad habits. He says that what we have to do is fully tune into every thought, every half-thought the brain indulges in. Then interrupt it – more STOPS! – and think of something else instead.
‘Imagine our mind is like a train that keeps chugging along. You have to interrupt its flow, its path. It should break that pattern of thinking completely. And if it doesn’t? Simply do it again.’
The more we do this, he promises, the more our thoughts will be interrupted at a neural level, and therefore will create new neural paths, less anxious ones, more positive.
There is more. In addition to the incessant STOPS!, he recommends a daily morning practice: yoga, breathing exercises, a little meditation, then 10 minutes of powerful, healthy visualisation exercises. Recall a time when we felt truly happy, truly loved. Where were we? What were we feeling? Which colours would we associate with the experience?
Tune into it all as fully and expansively as you can, he says. Try to drum up a tingling sensation, goosebumps. Revel in the memory, call it up vividly, and stay with it for several minutes. Then repeat the exercise four more times, each time summoning up as much positivity
as possible. Thrum with it, because the brain enjoys being in that nice place. It hasn’t been in a nice place for a while now; it’s time to reintroduce it.
Every practice needs a name, and so Gupta calls his The Hour of Power.
On the night before my first morning, I set the alarm clock for 6.50 a.m., entirely prepared for the fact that I will roll over and switch it off at 6.51, then sleep another hour. And yet, in the event, I awake earlier, impatient to get going. When trying to return to sleep fails, I get up, shower, do some yoga, some breathing exercises, my meditation, and run a selection of my life’s greatest hits in my mind’s eye. It all feels positive, proactive.
I do the same the morning after, and then the morning after that. Before I realise it, I have been doing it for weeks, weekends too. Occasionally I catch my reflection in the wall clock’s face – not even seven o’clock in the morning and wide awake already, in the midst of a routine I would have scoffed at a year ago – and wonder: is this really me?
For the next six months and beyond, I maintain if not quite that same Christmas morning buzz, then certainly sufficient levels of enthusiasm to still get up and undergo a fairly lengthy stretch of methodical amygdala calming. In some sense, they are the best moments of my day: awake before anybody else, watching daylight creep across the early-morning sky, hearing my girls wake up, alert already, and racing across the hall to jump on our bed, only to notice me missing.
‘Where’s Daddy?’ they ask Elena.
‘Work.’
The yoga and meditation, at least for the time being, remain fairly minimal, no more than 10 minutes allotted to each, as per instruction, and if the breathing exercises are annoying – you have to close off one nostril with your fingers and breathe through the other, then swap, and I always somehow manage to smear a finger down the lens of my glasses – then at least they are brief, over and done with in five or six minutes. But it is the positive visualisations that offer the most fulfilment. It is not often on any given day you find yourself with time to conjure up, and revel in, some of your own personal highlights from life. I recall, in detail, time with Elena before the girls came along: Wengezi Junction on a sweltering morning in, truly, the middle of nowhere, wondering but not really caring whether the bus would ever arrive; dawn somewhere outside Mysore, the train tracks rattling beneath us, the holler of a tea wallah crying chai! chai! further down the overcrowded carriage, its sweet smell mingling with a hundred others, not all of them quite as sweet; waking up at Llulluchapampa campsite, almost 4000 metres above sea level, and taking in the exhilarating view of the clouds not above us but below; a small flat off Deptford High Street with too little furniture in it, where she took me into her bedroom for the first time.
And then the times with the four of us: cycling among thousands of others through the streets of a London closed off to all cars, ringing bells, honking horns and slaloming in and out of slowcoaches; wading through a waist-high, bath-warm Mediterranean Sea, one daughter tucked under each armpit as we looked out for jellyfish and pretended to be scared; and then, later, at night, the looks of delight on their faces when they realised that, yes, even way past their bedtime we were prepared to go out and buy them another ice cream.
It is on more than one occasion that the goosebumps are accompanied by a lump in the throat.
I go on to complete the six months, just as Gupta had encouraged. Then, aware that I am beginning to feel better than I have been for a long time, that my fatigue is becoming a different thing to me now, less fraught and more manageable, light at the end of the tunnel, I realise that I do not want to stop my morning’s Hour of Power, and so I don’t. Gradually, I begin to imagine myself doing this every morning now, a new, permanent routine, something I would previously have thought unimaginable, the holistic pursuit of somebody else, somebody wise, but not me.
I do not realise this at the time, but I suppose I am going through some kind of transformation here. Some people might describe it as a spiritual awakening, but I won’t. Nevertheless, I have discovered something inside me I never knew I had, a something that has nothing to do with any sort of religion or higher power, but simply to do with me. It is me who has learned I have the power to affect my thinking, and for the better, to make me feel good, and happy, and motivated. The physical energy will return in time, but no more will I allow myself to feel quite so negative or despondent, or ruled by it, and quite so helpless. I like what all this is doing to me, how it is facilitating me, and freeing me up. No longer do I consider myself to be living under quite so heavy a burden, and I no longer consider my fatigue my own personal Incredible Hulk. These hours of power have allowed me to glimpse into my past – and the person I used to be, before illnesss – and they have helped me realise I can recreate that healthier mindset, and make it a part of my future, too.
Twelve
In the dozen years since my mother’s death, I have made an extra effort to visit my grandparents in Milan as often as I can. I used to spend every school summer holiday there, when time for a teenager passed at a torturously slow pace, with nothing but MTV to alleviate my boredom. In my adult years, I have tried to visit at least twice a year, each a long weekend of pleasant inactivity, plenty of good food and the same old card games in front of the television. As an exercise in nostalgia distilled, it’s a potent one: their home hasn’t changed at all, and the same clock still ticks on the same mantelpiece, morning and night, chiming every quarter hour as if every quarter hour needed marking.
These times out from my life have never required much effort from me, merely a couple of cramped hours on a plane, a half-hour bus ride into the city centre, 20 minutes on a Tube, and a further 15 on foot to their apartment complex that flanks a busy road full of lorry stink, and finally three floors up to the small rented flat they have lived in for over half a century, and where they wait for me with open arms.
After my daughters were born these uncomplicated getaways became a little more convoluted, but following my grandfather’s death, the visits took on greater emphasis, my grandmother now otherwise mostly alone. I did my best to increase my annual visits.
When the fatigue came, the visits shrank to zero. My every impulse told me to tell her, to explain, that she deserved to know why I was suddenly staying away. But when I conferred with a family friend, I was told, vehemently, that I shouldn’t, absolutely not, that my grandmother would become sick with worry and fretting, and make herself ill as a result. My grandmother, she reminded me, was a worrier. But how to explain my abrupt absence, the fact that I was no longer visiting every few months? Every phone conversation we ever had had always finished with me saying see you soon, and her asking when. What would I say now?
For reasons I could never quite fathom – had the family friend said something, in some subtle way? – my grandmother never did respond with her routine ‘When?’ ever again. I had children now, and maybe she knew that that is what happens when you start a family: priorities, sacrifices. I felt dreadful about this, convinced she might believe I had forgotten her.
‘Then let’s go and visit her,’ Elena says to me one night, plainly and reasonably, as if it were the simplest thing in the world. I look at her agog, and explain that if I still have difficulty taking the children to the playground, then negotiating an airport, a bus, its metro system and the long walk past the pet shop, the ice-cream parlour and the home-furnishing showroom en route to her flat was certainly too much. It is true that I am making progress, but I can’t do this, not yet, I insist.
‘Nonsense,’ she says. She smiles. ‘We’ll drive. It’ll be fun.’
It might also offer the two of us an opportunity for some extended time together, alone, something all parents not heading for divorce purportedly crave. We do. And I could perhaps use the opportunity to my advantage, to remind her that there is more to me, just, than perpetual sleep-hungry self-misery.
If my illness has brought me any real wisdom so far, as we are told illness is supposed to do, it is the knowledg
e that I married well. I had always known Elena was a strong woman, intelligent and passionate but also practical and seemingly unflappable. I have watched her bring to situations a sense of calm I would not have had a hope of bringing myself, and only infrequently would I wonder, when pricked, would she bleed?
But throughout this entire period, she has exceeded any expectations I may have had. I’m not sure how she does it. She tells me she copes because that is what people do when they have to. This is true, of course, but she has done so with a grace I would not have been able to summon up were the situation reversed. (It is only when I start to get better, incidentally, that she cracks and the pressure that has been building comes out.) My fatigue has affected her as much as it has me. Our lives have narrowed, plenty has been sacrificed, and we are both waiting impatiently for it to be over, to have finally evaporated and become a part of our shared history.
And so the idea of a road trip is exciting, on many levels. We have already lost ourselves, to a certain extent, within the mess of parenthood, and my condition has mostly cancelled out any lingering semblance of the people we had once been to each other. A road trip, then, will be good. It makes me nervous to consider it, but that in itself is no bad thing. Nervous is good; it is the precursor to adventure.
I like to think I had had a good relationship with my mother, someone with whom I could talk about most, if not quite all, things. With my grandparents, there was little we ever really said to each other outside the weather and work. How’s the weather? Warm. And work? Busy. Good. Our unwritten familial law was never to burden one another with one another’s problems; their directive, not mine, and one compounded by the fact that they couldn’t speak English and my Italian was only falteringly fluent. When my grandfather fell at home and broke his leg, at the age of 94, I wasn’t informed until he had spent almost a month in hospital. When I finally reached him on the phone, he insisted he was fine, and my grandmother corroborated the assertion, confident he would be home soon.