Sunday, 6 October 2013

Break it to me gently, doctor, how long have I got?

Also published on here:

A notice on the wall of my GP’s surgery reads, “Do not discuss more than one problem per appointment. Remember, you are allotted only 10 minutes.”

It was a message reiterated to my dad during a consultation in early 2011 when he mentioned a second concern: a lump on his head. The primary concern was a larger, as-yet-undiagnosed lump on his shoulder.
“This is a 10-minute appointment,” the GP said firmly. The implication was clear: he didn’t have time to look at the growth on my dad’s head.

Three months later, Dad was dead. The lumps were cancer that had spread from his lungs. 

I’m not blaming the GP for my dad’s death. The cancer had metastasised and there’s little chance it could have been halted by swifter medical intervention. I am not blaming; I am asking: when did GPs run out of time for their patients? What changed? 

You don’t need to know much about biology to realise that the body is a holistic system: the component tissues and organs interact and affect each other. It’s not uncommon for a symptom in one part to be traced to a root cause in another. 

We rely on GPs to be crack detectives of physiology, seeking out as many clues as possible to home in on the underlying malady. Our lives are in their hands, and that shouldn’t be an unsettling thought.

For many of us, it takes guts to book an appointment and tell a stranger about our worries. (Not to mention the added stress of negotiating time off work, etc.) We’re often scared, especially if we fear it might be something serious. We also worry that we’re wasting the doctor’s time, even when we know deep down something is wrong. We’re easily put off by brusque treatment, made to feel feeble and even more apprehensive; next time something hurts, we think twice before seeking advice.

A detective wouldn’t cut short a witness: “Stop blathering about the colour of his clothes and cut to the bit where he pulls the trigger.” So why does a GP in pursuit of diagnostic pointers discourage a patient from describing fully their concerns?  

Yes, I know time is money (a GP’s time, lots of money) and money is limited. I know too that some people waste GPs’ time with untreatable sniffles etc, but that can’t be helped except through patient (in both senses of the word) education. If the system is buckling, let’s at least take notice and fight to save it. Institutional cursoriness isn’t a solution, it’s surrender.


I’m a sniffling time-waster, perhaps: there’s probably nothing seriously wrong with me, but a couple of times lately while running my heart rate has leapt up to 220bpm. My usual ‘maximum’ is 185bpm. It didn’t hurt but I felt a flutter in my chest and running suddenly felt harder. The first time it happened I wrote it off as a one-off glitch and did nothing; the second time, I figured I should get checked.

The GP referred me to the practice nurse for an ECG, which came back as abnormal. The length of time between the electrical signal telling my heart to finish a beat and the beginning of the next one, to start the next beat, is longer than it should be. Having an over-long QT interval is associated with dropping dead while playing sport. 

“I want some advice from a cardiologist on this,” said my GP. “We ought to get an answer quite swiftly, so I’ll have a fax sent today. In the meantime, don’t push too hard.”

That was a fortnight ago. I’ve heard nothing. I phoned the GP’s surgery and the receptionist told me to contact the hospital cardiology department directly. So I rang the hospital, and was told that the relevant paperwork would be impossible to find unless I knew the name of the consultant to whom the fax had been sent.  

“Which consultant was the fax sent to?” I asked the GP’s receptionist.

“We never specify a consultant, we just send it to the department.” 
“But… But please, I don’t know what else to do.” 
“Well, I shouldn’t be doing all this chasing-up. We’ve been told not to. We don’t have time,” she huffed, before reluctantly agreeing to resend the fax. “Try calling us next Monday to see if we’re heard back.” She didn’t sound confident.

I don’t feel entitled to urgent attention; I suspect my heart is OK – I’ve been running for years and I figure that if my ticker were going to fall fatally out of rhythm, it would have done so before now. Even so, what if there were a serious risk? What if I did have a timebomb in my chest? Would the NHS have the time to tell me? Who knows.

Sunday, 19 May 2013

Not seeing: the funny side

First published on on 17th May 2013, under the heading 'Facing blindness by seeing the funny side'.

The film Come As You Are depicts blindness, disability and illness
with humour, compassion and a striking lack of queamishness 
What would you do if you were told you were going blind? Quit your job, cut loose and rush to live out your most lurid fantasies? Nice idea, but your mates are still at work, and wealth doesn't increase in inverse proportion to eyesight, alas. Still, you'd be expected to react, so what would it be: fury, despondency, soul-searching, or would you try to see the funny side?

In the summer of 2006 I was diagnosed with retinitis pigmentosa (RP) – an inherited condition that affects the retina of the eyes, often leading to complete blindness. It was picked up by an optician at a routine sight test after I casually mentioned my exceptional clumsiness after dark (how I'd fail to spot big things like cars and ditches which, I'd noticed, everyone else managed to avoid). That's how RP begins, with night-blindness and accidents, followed by a gradual erosion of peripheral vision and more accidents.

When I told my family, they frowned gravely and muttered terrible portents like "devastating" and "life-changing".

But I didn't feel as though much had changed. I might go blind; I might not. I might walk into the path of a bus; I might hop on it and go on a fantastic journey. The future remained unforeseeable, and the splotches of peripheral vision whose absconding I had barely noticed remained unseen – as well as unseeing. Blindness was already here in a ghostly, imperceptible sort of way; I felt more perplexed than devastated.

My mum, realising that half the genetic flaw causing my eyes to self-destruct came from her, was overcome with guilt. Learning about the randomness and odds-defyingly bad luck inherent in inheritance didn't help. Nor did it help when I stressed that I was not merely unresentful, but grateful to her for having had the particular genetic accident – coding error notwithstanding – that made me.

None of this was funny. I don't remember crying, but I definitely didn't laugh. Now, seven years on, when kindly folk ask – as they do – "How are your eyes?", what am I meant to say: "Still rotting?" Hardly amusing, I grant you, but what else?

There's no natural or comforting response to sight loss. A couple of years back, a Channel 4 documentary-maker leapt to the presumption that I'd want to go on a grand sightseeing expedition to curate a memory-gallery of sights to console myself with in years to come – a proposal I turned down after emailing the blind academic John Hull (PDF).
"The supposition is that the life of a blind person will be retrospective, living in the past," replied the media-wary professor. "But one must affirm one's grasp of life as a present reality, not live in nostalgia."

I also emailed the American memoirist Jim Knipfel – who went blind as a result of RP in his 20s – who explained how he too was approached by a film-maker of a sentimental bent. "Upon meeting me she said, 'Oh, how wonderful it must be to be blind – you're living in a whole new, magical world.'"
What possible response? "My first impulse was to grab a letter-opener and let her find out first-hand what blindness is like. Instead, I warned her that her belief in magic might not survive watching me try to get across my apartment without tripping over anything."

In fairness to these film-makers, it's not easy to depict sight loss in a visual medium – and at least they wanted to try. All too often, blind people are omitted from film and TV for fear of depicting them in an insensitive way or unsettling the audience. This lack of representation is creating a problem for visually impaired citizens of the US, reckons Knipfel.
"Kids no longer grow up with images of bumbling blind people in cartoons and on sitcoms, and so no longer understand the white cane. This move to make everything 'nice' has resulted in an incredibly dangerous situation, as all those people I've run into can attest."
Which is one good reason among many to endorse the daring exceptions, films such as Come As You Are (to be released in UK cinemas on 7th June) – a funny, moving and distinctly unsentimental story about three young men, one blind, one paralysed and one who has cancer, who go on a road trip in pursuit of sex.

Knipfel's writing is a masterclass in seeing the funny side when you can't see much else. Now 47, he has honed a knack for dragging readers deep into the awfulness of a situation before bursting the pathos with an acerbic joke. His grimly mirthful memoir Slackjaw – lauded widely, even by the usually reticent Thomas Pynchon – details some of the dire predicaments Knipfel got into as a young man with deteriorating sight. The worst was when, aged 20, he collided with a lamppost so hard that it left him with a brain lesion and permanently reliant on anti-seizure medication. His vision continued to recede and he was registered blind by the time he was 30 – the age I am now – yet he remains relentlessly sardonic and self-mocking. Is that what I should do, take my sight loss less seriously?
"Well, humour has always been my reaction to a world I find absurd," confesses Knipfel, "especially when the people around me seem to take it all so seriously. When I went blind, that seemed as ridiculous as anything else, so I reacted to it in the same way."

But does it help to cope with sight loss, this refusal to take the world seriously? "To be honest, blindness has never really bothered me that much. It's an annoyance – like a head cold or hangnail. The best thing about mixing blindness and humour is that I can now get away with even more than I did before."

I admire Knipfel's insouciance, but it's not for me, I fear. The prospect of worsening sight scares me, and I don't find it easy to make light of the gaucheness it causes. Remember when Gordon Brown, who is blind in his left eye, roused hilarity by appearing to shun a handshake from a policeman on the door of 10 Downing Street? I felt a stab of vicarious embarrassment because I suspected that Brown's failure to spot the officer's outstretched hand had been caused by his limited peripheral vision – it's a mishap that has befallen me several times. OK, such faux-pas are comical, but isn't it just plain cruel to laugh?

Author Jim Knipfel wears a fedora - for safety reasons
"Not at all," insists Knipfel, who wears a fedora because the brim gives a "split-second warning" before his head hits another post. "All of us – blind people, sighted, disabled, mentally ill, whatever race, whatever religion – we all have attributes that can and should be amplified for comic exploitation. We're all fodder!"
It's hardly comforting, the prospect of becoming ever riper-fodder for ridicule, but I suppose it's preferable to being disregarded or patronised. "Damn right. The blind are, for the most part, a fairly hapless group. You deny that and, as I mentioned, before long no one will know what a white cane is or what blindness entails, and that's no good for anyone."

"OK, Jim, I'll do my best," I resolve to email back. "Now if you'll excuse me, I'm off to buy a sombrero. Even if it doesn't save me from handshake blunders or lampposts, at least it'll hide my blushes."

Monday, 4 February 2013

This is not a running blog

Updated version of 'Why I run' – originally posted on 20th January 2011:
Running can be painful but not as
painful as running blogs

I’m not sure about running blogs. Running is what makes life worth living, that’s true, but people writing about their running, well, it seems to me the potential for being dull heavily outweighs the scope for being original, insightful and/or entertaining. 
What’s enjoying about running is running: the act itself. Like sex, it’s rhythmic, invigorating, animal and difficult to describe beyond the basic mechanics: one foot in front of the other, repeat. The enjoyment is the doing: absorbed in the moment, body in motion, mind quieted, undistracted. When I am running, I am running.
Writing about running for other runners of similar standard is fine – we indulge each other as a means to ever deeper self-absorption – but for a general audience? No, no way. The last thing I'd want to do is add to the web-swell of boring blather about split times, barefoot shoes (eh?), journeys and goals. I’d fail to capture the appeal; I’d be anal and puritanical about training routines; I’d pointlessly deride slower runners; I’d be that most loathsome thing, a running-bore.
But there is one question that people, including and especially non-runners, want answered: why? Why do we go outside for prolonged periods every day, come cold and rain, come leg aches and bleeding nipples, to get our fix? It is baffling, we must accept, and it warrants an explanation.
So, this is not a running blog; this is a one-off attempt to explain why.
Hitherto I’d not felt called on to explain it. It was just something I’d fallen into the habit of doing every day, like walking the dog, only faster and without a dog. Explaining why – accounting for being apparently as burden-tethered as a dog owner while not in possession of a dog – wouldn’t be easy. But then I read a book assessing why men read men’s magazines. No, not porn, but laddy-lifestyle mags such as Men’s Health, GQ, FHM, etc.
It was a sociological study by a trio of academics, exploring why men enjoy reading articles about how to ‘get ripped’, ‘craft a washboard stomach’, ‘dress to knock her dead’ and ‘steer clear of gold-diggers’, that kind of thing. I will make extensive reference, for reasons that will become clear, to the chapter entitled “Consumption and the sociology of the body”.
That’s quite enough preamble; without further ado, this is why I run:
1. Because my job is too easy
I run because my job doesn’t tire me out or make me feel manly and important. I do not earn money by digging holes in the ground, like my father did. His job kept his body lean and muscular (and tired); it was a job for life; it fulfilled a useful function with obvious benefits to society; it earned him money to feed his family. My job involves sitting at a desk all day (burning very little energy), fiddling around with words no one needs to read, earning money to fritter away on my own amusement. I run because it makes me feel as though I am doing real work, helping me feel fit and alive, and giving me a project on which to expend surplus energy.
“Capitalism is no longer dependent upon the condemnation of sexual and physical pleasure and the maintenance of strictly disciplined forms of manual labour. Instead, the body in consumer culture is both disciplined and hedonistic. In such a culture, the body becomes a vehicle for pleasure, youth, health and fitness; that is, it is increasingly viewed as a passport to the good life… Life itself is a project within modernity.”
2. To feel superior
Running makes me feel as though I have an advantage over others. I have no power over others in my job or in my relationships (unlike my father, who was indisputably head of our family). Running is an arena in which I can strive to dominate others, to try and be exceptional; keeping fit makes me feel less fallible, less likely to need emotional or medical help.
“[Running] prepares men for the atomised world of late capitalism, providing them with crucial ammunition in helping them gain a competitive advantage… The hyper-competitive social relations of late-capitalism manifest themselves in male relations at work, in friendships and in relationships. The need for intimate human relations that men have found so difficult to recognise within themselves are displaced through myths of self-sufficiency and independence.”
3. To forestall my body’s decline
I'm 30 now, so my body is about to begin its slow yet inexorable decline towards old age and death. My job is not tough or tiring enough to distract me from this awful truth. But, all the time I am getting fitter and faster, I have firm proof that my body is an anomaly, defying science – not only evading deterioration but improving. Working hard at running provides definite, measurable evidence – in the form of improving PBs – that my body is flourishing; I’m not just outrunning the Grim Reaper but lapping him, making him look stupid.
“Just as men face an increasingly uncertain future in the workplace, so their bodies become places of intense anxiety and scrutiny in terms of their inevitable decline. In order for this decline to be halted or at least temporarily arrested, the body becomes something that needs to be invested in and worked upon… The body becomes a new site for social discipline.”
4. It gives me an identity
How do you define yourself? Which single word best sums you up? The first adjective in my Twitter biog used to be “Runner” (until writing this made me self-conscious about it) – I defined myself by my hobby, first and foremost. In the past, most people defined themselves by their profession, but less so these days. Nowadays, it is not sensible to get too attached to one’s job (consider all those people employed in the public sector to whom the government has said: “You’re not required anymore, and probably never were”.) Our jobs are uncertain, unsafe and of questionable utilitarian worth.
“In the new world of flexible employment, the rules are made up as we go along, the ability to adapt and change is the most prized of possessions and the act of departure valued above that of reaching the destination.”
Indeed, some of my fondest memories involve handing in resignation letters and leaving jobs.
“… the idea that our skills may well become redundant in the future means that the workplace can only offer the most insecure of identities. The body, then, becomes a domain to be ‘worked on’ and regulated. The body requires finely itemised forms of labour in order that it might produce measurable effects. This process of physical transformation grants the masculine subject a sense of security and continuity denied him within the workplace… Uncertainty converts the body into a new project of identity.”
5. To be a machine
The fallibility of my body is unbearable. Consider my eyes – one minute, they’re fine, seeing everything normally; the next, they’re destroying themselves and I’m going blind because of some silly little genetic quirk. Being trapped inside a human body is ridiculously perilous. It is far better to be a machine. Runners look upon their flawed carcasses as embodied apparatus – hard, robust and responsive to fine-tuning.
“Men’s relationships with their bodies is often represented as being purely instrumental… The application of instrumental logics… [and] tips and advice keep the body ‘running along smoothly’. The most often used metaphor in relation to the body and sources of food and energy is that of ‘refuelling’… [Men] seek to convert the body into something that can be controlled by scientific forms of rationality protecting the self from having to develop a more vulnerable relation with the body’s own needs.”
6. To flee from death
As discussed above, my body is about to begin its decline towards death. I am unable to accept my own death, for it is too terrible a prospect. While I’m running and getting fitter, I feel very alive; so it follows that running is the opposite of death and, as such, keeps death at bay. I know that immortality is a questionable corollary to “feeling very alive”, but the illusion makes existence more tolerable and helps me forget the terrible truth. Besides, no one has anything better to offer. Religion isn’t taken seriously anymore, and “a problem shared is a problem halved” doesn’t seem to apply to death – believe me, I’ve tried; it’s my favourite topic of conversation down the pub.
“The culture of bodily fitness and exercise is bound up with a fear of death and mortality… In the face of death we often go silent, because we lack a common language in which to frame the experience… Death is something to be hidden away and privatised within modernity. Fear of death becomes… as Castoriadis argues, ‘that everything, even meaning, will dissolve’… Death is that which cannot be mastered and controlled, despite all our efforts to mould and shape the body. These concerns can be forgotten about, or at least this is the expectation, through daily regimes that invite us to keep an ever-watchful eye on our health.”
Source: Making Sense of Men’s Magazines, by Peter Jackson, Nick Stevenson & Kate Brooks, published by Polity Press, 2001.