by Nick Duerden
Which is why, for so many of us, long-term illnesses and conditions can leave scorch marks. ‘Yes,’ says Susie Orbach, ‘but they may turn out to be very good scorch marks in the end.’
I expect her to say more here, to fill her economical sentence the way I would – with more words, and yet more words – but she doesn’t. Instead she does that endlessly enigmatic psychoanalyst thing of allowing her gaze to simply settle on me, forcing me not just to respond to what she has said, but to think on it. And I do. For days and days afterwards, I think on what she said, and relive our conversation time and again, looking, I think, for clues and answers and direction and implied wisdom. I come away with two things: many more questions, and the conclusion, late as I come to all conclusions in life, that therapy can be highly nutritious.
I should have had more of it.
Nineteen
The morning I learn that I don’t have chronic fatigue after all is a curiously anticlimactic one. I’m at an NHS hospital that looks spectacularly old and unloved, even by NHS standards. It is so conspicuously empty, of both doctors and patients, and so sadly downtrodden (paint peels from walls filled with notices for long-passed events; footprints echo down its worn-out linoleum corridors), that I half wonder whether this hasn’t actually been closed down years ago and I am only really here in a mischievous dream full of psychological hints that point to my state of mind. I am the only person in the cavernous waiting room, and while I wait, in sinister silence, I browse a 2011 copy of Chat magazine. Unsettlingly, I find that my phone has no service. I’m in a windowless twilight zone.
I’m here because of Professor Peter White, the specialist consultant who was quick to tell me, when we met a few months previously, that this area of illness was rife with misdiagnoses and contradiction. He had told me that four out of 10 cases of CFS are misdiagnosed by doctors and immunologists. ‘So if you are not given the right diagnosis, it’s no surprise when the treatment they offer doesn’t work,’ he had said.
I had met him to talk about his work rather than to ask for medical advice, but as we parted he kindly offered some. He said that I should look up my old friend Dr Dolittle, and request now to attend one of the CBT courses he had initially recommended. ‘I’d ask you to come on one of mine,’ Professor White added, ‘but you live too far away from here, and the NHS doesn’t work that way. You have to approach your local service.’ He said it would be useful for me, and that I would definitely qualify this time. After all, it had been Dolittle himself who had suggested I attend his clinic in the first place, specifically for graded exercise therapy, but he had also mentioned their CBT classes, back then an unknown acronym to me; he could hardly reject me now.
When, several weeks later, I receive a letter from Dolittle’s office rejecting my request – I still don’t meet the criteria – he does offer, as an ameliorative perhaps, an appointment with one of the clinic’s doctors to talk through any issues I might be struggling with. Three months later, and here I am in the forgotten suburban hospital, two long bus journeys from my home but still deemed ‘local’, quite possibly in a waking dream of my own imagining.
The doctor I see, at least, is lovely, a kindly, sympathetic woman in her mid-30s who talks to me for an uninterrupted hour, her questions more thorough than any I have been asked at any point in the last three years. Her conclusion, she says, is definitive: I don’t have chronic fatigue. Of all the symptoms they look out for in such cases, the only one I possess is the fatigue itself. I show no signs of depression; I remain mentally alert. Yes, I experience torturously long periods of extreme tiredness, but there is no brain fog, no aversion to bright light or loud sound. Essentially, I function fairly well.
She goes on to say that post-viral fatigue is a little more vague. It is possible that my persistent fatigue is more physical in nature than mental, a problem with my T-cell regeneration not functioning as it should. But this is a theory they are still awaiting concrete evidence for.
‘Anyway,’ she says, ‘discard everything you have heard for the last three years.’
I am more than a little bewildered.
Dr Dolittle had himself, of course, suggested after our 10-minute consultation that I was merely ‘post-viral’, though he did concede that the fatigue itself was clearly, in the literal sense at least, chronic, and the course of treatment he recommended was the same course he recommended for those suffering from CFS and ME. Consequently, everything I subsequently pursued was as a result of that consultation, and geared towards those with fully diagnosed CFS. I wonder aloud now, to the doctor in front of me, why he did that. Why recommend me for something he would ultimately bar my entry to?
She smiles uneasily. ‘I don’t know.’
What she does tell me is that while my condition has clearly been, and still continues to be, debilitating, it is less serious than the other kind, less restricting in the long term, and so I should probably try to dismantle the unhelpful mindset Dolittle had unwittingly lumbered me with, and instead take this latest diagnosis with the optimism it deserves. ‘It’s good news,’ she says.
In the 1983 film Trading Places starring Eddie Murphy there is a scene towards the beginning in which Murphy is begging for money on the unfriendly streets of Manhattan. He is sitting on a wooden crate on wheels, his legs concealed beneath him, dark glasses hiding his eyes. The suggestion is that he is a war veteran, blind and legless, a tragic figure deserving of charity. But the police, wise to the ruse, apprehend him. They remove his sunglasses, then lift him up out of the crate until gradually Murphy is forced to lower the legs he still possesses. Desperate now, he feigns surprise, then jubilation.
‘I can see! I can see!’ Murphy cries. Then: ‘I have legs! I can walk! Praise Jesus!’
This scene comes back to me as I leave the hospital this morning. I have just been told, essentially, that everything I know is wrong, and with it a tacit suggestion that had I been given a longer initial consultation, then things might have played out differently. Yes, I would still have been ill, but perhaps without Dolittle’s ‘worst-case scenario’ I would have reacted with less fear; my brain would not have quite reached catastrophe; the fallout would have been less.
It is raining steadily now, and as I am crossing the road, the bus, my bus, passes in front of me. There is still some distance to the bus stop, and under normal circumstances I would let it go on without me. It’s only 20 minutes until the next one. But seeing as I don’t have chronic fatigue, I make a mad run for it. After all, I have legs, I can walk. Praise Jesus.
I make it, coughing and wheezing, my heart a basketball against my ribcage. I wheeze all the way home as I wonder what I should do with this new information, how it impacts me, what difference it makes, and should make. What do I care whether it’s called ‘post-viral’ or ‘chronic’? There is no straightforward treatment for the former anyway, so the latter was always my ultimate destination. Either way, that single symptom – fatigue – has been a permanent resident of my recent life, and a defining part of it. Friends tell me I should be furious, and those irate CFS forums I never visit would probably encourage me to start sending letters of complaint, death threats.
But what would anger buy me? The fact is, my condition – and my reaction to it – is nobody’s fault, not even my own. We have a health system that is really pretty amazing, and that successfully fixes most people when they are most clearly broken. But not all of us can be easily fixed. Those who fall in between fall in between. We are complicated creatures, after all, and experts say that modern life is making us more complicated still.
Besides, I have by now come round to my new reality. I don’t welcome it, I don’t willingly accept it, but it’s here, and I’m getting through it. We all adapt, all the time, and for all different reasons. And that’s what I’ve done. I’ve adapted, even if I have lost certain things in the process. The thing I truly lament is that my children might never know the old me, the me who never sat still, who never stopped doing things. But then our c
hildren never really know the old us, do they? They don’t need to. They settle for what they have. In this particular case, they settle for a father mostly sitting in a succession of comfortable chairs. Only I feel the contrast, the before, the after.
It’s the hare and the tortoise. It’s life. Best get on with it. And anyway, I have tools now, tools that come in handy in unforeseen ways, helping me deal with the stresses – and occasional all-out panics – of everyday life. There are a particularly stressful few days I go through with work, in which some people I interview express subsequent disappointment at the article for not being quite the hagiography their team had hoped for, but rather a more honest assessment of their high life and times. To compound this, there is the suggestion I may have some of my facts wrong. With this comes the unspoken threat of legal action.
Though I have never knowingly written a puff piece, and would never want to, it is rarely pleasant to know that something of mine has caused distress, even if that distress is ultimately generated by some very sensitive egos that should know better. There are lots of emails from their people, containing lots of exclamation marks, and I react to each of them poorly. This is compounded by a late-night phone call on a Saturday from their LA-based management further expressing their many disappointments. I apologise for any unwitting offence caused, but defend my right to produce a balanced piece. ‘But the fans didn’t like it,’ I’m told. The more she talks, the more my ribcage knits itself together. My skull becomes uncomfortably tight. Saliva evaporates from my mouth entirely, and working my tongue around the words I need to continue my defence requires a lot of concentration.
The night is disrupted, dreams contaminated. The same negative thoughts spiral around my head, and I reach for The Lightning Process’s mantra to break them. It works. I sleep. In the morning, I meditate for longer than normal, and though I have no concrete idea whether it helps, I can see that it is possible the stress might have been worse had I not. Either way, I’m glad I can turn to these things, these skills, instinctively.
It takes a good while to revert to normal. The emails cease, and the implied legal threat recedes when it emerges that I did not have my facts wrong after all; the offended party simply had a selective memory. In the time it takes me to fully unknot, I overanalyse my reaction despite the fact that overanalysis is the last thing I should be doing, a pointless, energy-sapping exercise. But it is hard not to, because the longer the stress lingers, the more I fear I might crash into another bout of debilitating fatigue. I am damaged goods, after all, and can no longer afford to expect to have the instinctive ability to brush it all off.
The debilitating fatigue never quite arrives, but while the stress lingers, I am fearful it will, and consequently am hardly fuelled with vitality. Instead, I am comprehensively tired, which is just another way of saying fatigued, thus providing me with the last link in what essentially is a self-fulfilling prophecy. It’s a murky place, my head.
Whenever I find myself in such a spiral, I go over these pages, to remind me of the methodology, the psychology, the pick-me-ups, and all the solid, sound advice pointing to ways out. I frequently recall the telephone conversation I had with a fellow sufferer a few years back, the man it was recommended I talk to as he was further along his path to recovery than I was, but who told me, when we spoke, that emotionally he was reeling. Of course he was, and I realise why now. It is easy to forget good advice when we most need it, when we crash and panic and flail, which is why it is so necessary, for me at least, to turn back to it and read it off the page as many times as required. It’s my therapist, perpetually on call, saying the same old things because that is precisely what I need to hear.
Occasionally, then, I catastrophise. But these are blips, and blips pass. I can, and do, moan that life is all effort these days, but life always was. The goals just feel richer now, and in my less am-dram moments, I realise that as a result of my efforts and, more pertinently, the teachings of others, I really am at last improving, I am at last getting better.
The irony that the overriding symptom of these fatigue-related conditions is a slowing down of things just when the signs of ageing were cruelly speeding up was not lost on me. And so while I was looking elsewhere, I appear to have fallen head-first into middle age. It didn’t even announce its arrival. If I had had the time a few years ago to anticipate it, I might have expected incremental changes, the gradual physical announcements of one bodily ache and pain after another. Instead, it’s as if it has happened all at once. I have gone from a comparatively healthy 42-year-old convinced he was still in the first few vigorous toilet flushes of second youth to an abruptly older gentleman. The bodily aches and pains quite possibly have nothing to do with any lingering fatigue as much as they do with my body beginning to go to pieces, as bodies my age tend gradually to do. I work in maintenance now.
Though I do not deliberately look for evidence that I am not the only one – safety in numbers – I nevertheless find it everywhere. I come across a report on the news one morning that says Britons are the unfittest people in the Western world, that none of us do very much exercise at all. We tend now towards indolence, and do nothing but sit around all day, at home, at our desks. Group activity comprises watching television together. If we have to travel anywhere, we do so by car or public transport. The result is an increase in heart disease, diabetes, obesity and early death. This means that with the exception, perhaps, of avid dog walkers, our collective energy levels are fast dwindling as we become increasingly habituated to our lack of collective motion. Fatigue might just be a byword these days that could apply to anyone. Must get dog.
I read a travelogue, Tim Parks’ Italian Ways, in which the author says he can chart his own ageing process in terms of the energy he still has to tackle stairs. At one point he is late for a soon-departing train, and so has to hurry. But he is a man in his 50s. Hurrying no longer comes easy. He struggles.
‘At 35 I could do the steps two at a time from the metro platform to the ticket hall and again from the ticket hall to the platform – a total of five floors, I’d say,’ he writes, ‘. . . arriving at my train bathed in sweat but barely panting. At 40 I was panting hard but still forcing myself. At 45 I was obliged to take the top section just one step at a time and still feared my legs might buckle under me or my heart burst. I would collapse into my seat with pulse thumping and a taste of blood in my throat.’
From other people’s limitations we draw comfort. I too am the same with stairs now, and have to prepare myself for them both mentally and physically. I used to skip up them without effort, always carelessly. Shortly before becoming ill, for instance, my right foot misjudged one of the steps at home, the nail of my big toe snagging upon it and lifting free from its secure moorings, then resettling in a pool of blood I can still see today. I no longer snag toenails; I’m too slow for that. It takes me impatient time to climb them today, but I still reach my destination because my destination is going nowhere.
I have come to accept this as just another unavoidable sign of the inevitable toll of my ageing, and nothing more sinister than that.
One morning, I Skype with an American who, after several personal life crises, renounced what he believed to be a prescriptive 9-to-5 existence in favour of living more spiritually, and more wholly for himself. He moved to Hawaii, became a Taoist and now helps guide those struggling through midlife via, he says, ‘a system of faith, attitude and practices set towards living your inner natural life rather than what others try to shape you into.’
We speak for what seems like hours but is surely significantly less, and it is at the point at which he suggests that, were I to follow his lead, I might be lucky enough to live until I am 120 that I wonder quite what it is I am doing here, now, conversing with him. He had requested we speak mid-evening his time, which is early morning for me, and so I am up in my room, with the door closed, as a family breakfast unfolds without me downstairs. I am having trouble following the man’s line of thought, unsurprising g
iving my thorough ignorance in the wisdom of Tao, and I begin to glaze over at much of what he says, then catch myself and worry that I am wasting both his time and mine.
With the kind of clarity that only ever occurs a little too late, I realise that I should now stop moving from one would-be guru to another, and that perhaps my plan of trying to write myself better has reached its natural conclusion. The state of being ill long term is curiously addictive. You become victim to it, sensitive to its mood swings. It can be difficult not to fall into its trough, and spend the rest of your life seeking wisdom from people who claim to have seen the light. But as the Hawaii resident talks I start to feel that it is time to get back to living my life, complicated as it still is, and push to the margins what has for too long now been centre stage.
‘Bodily decline is the story you have been taught because you have been taught that you have two halves to your life,’ I hear him saying. ‘Work, then retirement. The longevity techniques in Taoism teach you to learn to live more gracefully with your age. Not all people age visibly. You need to learn to pace yourself without stress, and in a way that is sustainable. Do that, and the body can go on great for years and years and years.’
But I have absolutely no intention of living until I am 120; the next few years alone should keep me busy enough, a period in which, if I am to improve my situation, I will have to do so by myself, alone. I tell myself that I need to get out there and participate in the everyday, and that the more I do so, the more the fear that has gripped me will gradually recede. This at least is my hope. And though I don’t know it yet, this will more or less come to pass. I will in time become more mobile, and will resume an outdoor life. I shall take holidays again, and fly to those destinations like everyone else, navigating vast check-in halls and far-flung departure gates that take forever to walk to. I shall go on beach holidays with my family. I shall hire a motorbike in Greece and disappear into the mountains on winding, empty roads, screaming euphorically into the hot winds at the sense of giddy freedom I thought I would never experience again, and I will come back home so desperate to recreate that situation that I will buy a motorbike – and all the gear, and take the road test, and secure insurance – within a few hyper-manic days of my return that will prompt me, briefly and metaphorically, to crash. I shall give in to the girls’ three-year pleadings and get them the dog they always wanted, and I will walk it in the sun and the wind and the rain, me, the man who couldn’t walk to the corner shop and back this time last year now getting reacquainted with London’s beautifully rambling parks, barely able to believe that it is me with a lead in my hand, and that the dog at the end of it is mine. And, yes, I will continue frequently to battle with bouts of excessive tiredness that lay me low for days, but I will win the successive battles painstakingly, one by one by one.