Microsoft word - will storr tbornottb.doc
Whenever i look back upon what’s happened, whenever I recall this unlikely and appalling
series of events, I’m always taken back to the same moment. It’s a perfect Friday afternoon in November, I’m cycling around Sydney’s beautiful Iron Cove and, for the first time in my life, I have nothing to worry about at all. Honestly, nothing. As I take in the untroubled sky and the water that’s winking and revelling in the golden blazes of early summer I think, “This isn’t normal. Something evil’s about to happen.” And then I get home and find the letter.
It’s from the Royal Prince Alfred Hospital in Camperdown, in the city’s inner west, and it can mean only one thing. I tear at the envelope and pull out a single sheet of cheap A4. As I unfold it, I remember my visit to the hospital a few days ago: a radiologist saying, “If you hear from us again, that’s bad news.” I rewind the scene a few seconds further. I’m peering into the radiologist’s dimmed sanctum, attempting to glimpse the two ghostly negative images of my lungs that she’s just clipped into a light-box on the wall.
She stands in the half-dark, frowning at the glowing, ghoulish photos. “Well, I can’t see anything to worry about,” she says. “I think you’re all clear. Probably, nothing will happen now. But if you hear from us …”
And now I have. Which means, like the seemingly pristine waters of Iron Cove, I too am actually dangerously polluted. As I’d whistled my way along the cycle path, wondering what was going to happen next, I’d been carrying a passenger, like some evil possessive spirit. That I’ve been sent this scrappy letter means that a possibility even I thought too calamitous to be true has been realised. Somehow, I’ve caught tuberculosis, a lethal disease I’d assumed existed only in Edwardian novels and the most wretched hospices of the deepest Third World.
These are the things I don’t know as I fumble at the letter, trying to convince myself there’s been a mistake. TB bacteria spread like the common cold, but only one in 20 people who hosts the germ actually develops “active” TB – a healthy immune system is usually enough to keep it sleepy. In Australia, however, we’re lucky: despite the fact that half the world’s new TB cases are contracted within our neighbouring countries in South-East Asia and the western Pacific, we have one of the lowest infection rates in the world, with between five and six cases per 100,000 people. Many of these infectees are immigrants – people, in other words, like me.
it is early 2007 when my partner, farrah, and i decide a radical change of climate may be beneficial to our happiness levels. As Britons applying for four-year temporary resident visas, we’re asked to provide Australia’s Department of Immigration and Citizenship (DIAC) with chest X-rays to demonstrate we’re TB-free. I’m not overly worried because I’m never ill: at my last address in London, where I lived for more than three years, I hadn’t even bothered registering with a GP.
We book in at a private hospital in central London one evening. Later, as an afterthought, while the credit card machine is dialling out, I ask the nurse if the X-rays look all right. “It’s supposed to be a secret,” she says. “Strictly speaking, it’s between us and DIAC.” She winked. “But as far as I’m concerned, they’re fine.”
So I don’t worry. Actually, that’s not true: I do worry. The truth is, I worry constantly, about everything. So that evening, when the nurse said, “As far as I’m concerned, they’re fine”, it wasn’t the word “fine” I seized upon, but the phrase “as far as I’m concerned”. “It implies it’s not up to her, doesn’t it?” I said to Farrah over a post X-ray plate of hummus and kebabs. “So we’re not in the clear.”
“You’d know if you had TB,” she said. “You’d be dying. Plus, who gets bloody tuberculosis?” She was right. I relegated it to a level-three worry – one below “tax audit” and two above “eaten by octopus”. It became a tiny concern, buried under a hillock of other troubles. Because leaving your job, your friends, your family and your flat to come to a city 17,000 kilometres away where you have none of the above is not easy for the athologically wonky-minded. The fact that, six weeks into our arrival, our visas mysteriously haven’t been cleared doesn’t help. One afternoon, a solicitor calls and tells me mine will be granted on condition I sign a “health ndertaking”
– a legal agreement that I’ll contact DIAC and be re-X-rayed. I phone DIAC instantly, the mental pacing of my worrying now at such a frenzy I feel as if I’m about to stride out the front of my own forehead. What have they found?
Obviously it’s not TB. TB doesn’t exist any more, except perhaps in countries where leprosy, witchcraft and child soldiers are considered everyday threats to life. Back in London, I cycled 30 kilometres a day; I have the lungs of a blue whale!
“Have they found something on my lungs?” I ask the operative. “Cancer? Might it be cancer?” “Probably the original X-ray wasn’t clear enough and they just need to get it done properly,” she answered. Of course! I’m reassured further by the placid nature of the letter I receive from the hospital. When it arrives, the appointment it announces isn’t until October and I’m even given a number to call if the date is “not convenient”. I know it’s not TB – that’s just stupid. And if it were cancer, I reason, they’d see me straightaway. Clearly, all this grief is the fault of a duff X-ray.
When the time comes, I saunter up to the Royal Prince Alfred’s 11th floor where I’m given a green form to take to Radiology on the fifth. Descending in the lift, I peruse the piece of paper. There’s my name, my address, my date of birth and the purpose of this X-ray: TB.
TB? In the time it takes for the lift to drop less than two millimetres I’ve deduced the following. I have caught tuberculosis. I have infected half of Sydney and all of Farrah. I am going to be deported, possibly tomorrow, by vengeful immigration officers wearing face-masks and carrying billy-clubs. The move back to the UK will send Farrah and me into debt. We will be unemployed.
We will lose our flat. We might even die – in penniless, hacking agony, in a filthy ward in the ructious bedlam of a south London hospital.
T here are two subtle but menacing differences between the first letter and the second. When I received the
first, the time gap between its arrival and the appointment it announced was several months. This one is three
weeks. And this time, there’s no phone number to call if it’s not convenient. When Lady Strife upends her evil witchbag over my head, I usually react by going into a jangled frenzy of ill-thought-out activity. I create waves of action – any action at all, it doesn’t matter – in an effort to repel the doom. I frantically click through web pages and flick through books.
The more I discover about bacteria, the more I begin to doubt the hubris of humans: any objective survey of the facts would surely conclude the world really belongs to them, not us. They’ve already staged five hostile takeovers of the earth, each of which took millions of years to recover from. Scientists tell us that bacteria were earth’s dominant species for three billion years. But what with there being roughly 10 times more bacterial cells in a human body than actual human ones, who are we to say they still aren’t? Most, I’m sure, are charming; many, I know, are essential. But quite a few really do want to kill every last one of us. These are the pathogens. And they’re winning.
The tubercle bacillus looks like a tiny sausage, and a single microscopic one of them is enough to set up a devastating colony in your tubes. An “active TB” sufferer expels 40,000 teeming droplets with every sneeze, and when a bacterium arrives in the warm, windy catacombs of your lungs, it begins its slow multiplication, dividing every 16 to 20 hours. TB is a catabolic disease, which means it steals your resources to live. And when the immune system begins its violent attack (the collateral damage of which devastates the lungs) the sufferer can become doubly, fatally weakened. But out of all the pieces of information I find over those dawdling, anxious weeks, these are the ones that worry me most: TB is the only illness that automatically triggers refusal of a visa to Australia; the antibiotic regimen lasts at least six months and is free, in NSW, to all except those holding a 457 visa – the type held by Farrah and me. According to the BBC, it costs at least £6000 ($13,500) to treat.
Meanwhile, word of the doom has spread. The phone and email have been hysterical with two generations of
Farrah’s family worrying at great length if I infected any of them or Farrah’s 18-month-old nephew Findlay on their recent visit. My mother has emailed to wonder if I put my two-year-old niece Beth in danger when I saw her six months ago. She then calls to check if Farrah’s all right. Healthwise, she is, but the threat of deportation and a $13,500 medicine bill has her uncharacteristically moody.
The shame of having a highly infectious disease is enormous. It’s like confessing you’re a criminal to your most loved and trusted. When they discover your secret, they take on an expression of quiet horror: you’re not the person they took you for; you’re something else, something dangerous.
You can sense them wondering, “Has he got me?” It’s a lonely business, too. Where you’d receive emotional support for suffering a busted spine or cancer, when there’s a possibility others will be forced to join you, they’re understandably more concerned for their own wellbeing. This is natural, of course, and perfectly reasonable. It’s still a shock. The whole truth is painful and it’s dirty and it’s this: I’ve pushed everyone I love into the path of danger and there’s no way I can manoeuvre myself blameless, even in my own thoughts.
“of course, you’re not to tell anyone about all this,” says the doctor. “People get panicky when you mention TB. You don’t want that.”
It’s a wet Sydney morning and my appointment hasn’t started well. The doctor is an hour late, which gives me plenty of extra time to sit in the waiting room and fantasise about calamities. Last week, I called a government helpline, explained my situation and was told that a panel of officials would weigh the cost of my treatment against the benefit to the nation of my presence. That’s when I really started panicking. Next I spoke to a solicitor who told me the health authority would expect my private medical insurance to cover the treatment.
And I said, “Private what?” I contacted a leading provider who advised me that even if I’d signed up the day I arrived, my TB would’ve been considered a “pre-existing condition” and I’d be entitled to naught. By now, I’m as sure as rock: they are going to send me home in a sterilised cage.
I wobble into the doctor’s surgery, soused in anxiety. I show her the internet document that says 457 visa holders have to pay. “I know about that and I’m telling you that TB treatment is free to all,” she says. “Even if we wanted to, we couldn’t send you back. People with active tuberculosis aren’t allowed to fly. And if we find it’s latent TB you don’t even have to have treatment.” “But – ” There’s a silence. “What … really?” This is fabulous news. Latent tuberculosis is what they call it when you’ve caught and fought the disease. Latent patients are frequently asymptomatic, and the first thing they know about TB is a chest X-ray that shows lesions – battle-scars from the silently fought war.
“You certainly look healthy,” agrees the doctor. “Have you been to Asia in the last few years?” I think for a moment. “I’ve been to Hong Kong. Three times, on assignments. And India three or four times. And rural China. And Pakistan.” “Did you go into the countryside in Pakistan?” “Yes. And I was in rural Colombia. And Venezuela, in the barrios. And Belize.” “Eastern Europe?” “Russia twice. And Poland in April.” “Sub-Saharan Africa?” “Uganda in February. Tanzania, Mauritania, South Africa. Do they have TB in South Africa?” The doctor looks up from her notes. “Try not to worry too much,” she says. “We’re trying to disprove TB, not prove it. Look …” She shows me another of those green treatment cards – this one for a CAT scan. Where it says, “Purpose of scan”, she’s written, “Disprove TB.”
The relief makes me sigh like a man who’s been found innocent. I grin and sag on my seat.
I start my friday by stripping down to my underpants, having a tap put in my arm, getting my veins filled
with iodine (which makes you feel as if the blood in your face is being gently sautéed) and having myself bombarded with rapid blasts of radiation from a CAT scanner. I polish it off with two more chest X-rays for luck. Of course, you know you’re in trouble when the gap between your hospital summonses is reduced to four hours. “How soon can you get back in?” says the nurse on my mobile, just after lunch. “Is it my scan?” I ask.
“It’s active TB.” Words travel faster than feelings; when you hear bad news, there’s often a curious moment of stillness before your emotions catch up with what you’ve been told. Held in that crystalline moment, you can
view your situation with a clarity and distance that’s almost amusing. And then it hits. Reeling from the force of the nurse’s words, I cycle to the hospital in a manner so berserk that it imperils my life more than exposure to the deadliest bacteria known to science.
The next medical specialist to see me does so from behind a protective face mask, in a sealed room that has a special air outflow to ensure my breath doesn’t kill anyone. I’ve been ordered to breathe warm, salty air until my lungs suffer seizure and vomit up sufficient phlegm for three samples. This is an “induced sputum” test. And she’s right: it’s not pleasant. When the results come, they’re negative, which shows I’m not infectious.
However, my doctor is convinced that the small cloudy area at the top of my right lung is active tuberculosis in its early stages. I’m to start a course of antibiotics that’ll last at least six months and will include four different drugs at 18 pills per dose. I’ll need my blood and eyesight tested regularly, as this combination of pills puts me at risk of liver failure and blindness (not to mention deafness and nerve damage). They’re so noxious, in fact, they make you cry orange tears.
I arrive at the Australian Society of Travel Writers’ Christmas lunch just as they begin to take effect. I suffer the first attack as I’m collecting my name badge. I lurch as a wave of prickles passes through me and my blood suddenly quadruples its speed. I try to focus. My palms sweat and I get the strange feeling that parts of my face are being pulled in bad directions; suddenly my left eye is half a metre in front of the other one, then my right cheek is stretched to the floor, then a spot on my brow is pushed inwards.
M y perspective on my condition shifts again when I’m asked to write about my experience for Good
Weekend and am afforded the opportunity to gather information as a professional journalist and not some paranoid, jibbering web-prowler. My first call is to Peter Davis, then an administrative officer at the Health Assessments Service at DIAC, who explains that most migrants to Australia are required to undergo a full medical examination as well as a radiological assessment. Davis tells me that 10,000 “health undertakings” of the type I had to sign are issued annually. “Only Commonwealth doctors can approve an undertaking,” he says, “and if we put someone on one we’re satisfied they don’t have active TB.” Incidents of immigrants who have been issued with undertakings turning out to have active TB are, apparently, extremely rare.
A great deal of the information I’ve gathered turns out to be inaccurate. When I speak to Dr Cathy Hewison, an adviser on tuberculosis to health charity Médecins Sans Frontières, she tells me the course of antibiotics I’m taking doesn’t cost $13,500, but between $50 and $100. “It’s cheap. They are old drugs. That’s part of the problem.” Hewison tells me I’m taking a combination of four antibiotics (Ethambutol, Pyrazinamide, Isoniazid and Rifampicin), some of which kill the bacteria by attacking their cell walls and some of which prevent them from replicating, which gives my immune system a chance to kick them to death. These drugs were developed more than 60 years ago. She goes on to tell me the diagnostic test, for which my sputum was induced, only identifies around 50 per cent of infectees and was developed in 1882. Because TB isn’t seen as a priority in the developed world, virtually no work has been done on new drugs since the 1960s.
“What’s worse, because of drug-resistant tuberculosis, which is becoming more and more of a threat – even in developed countries – we don’t need just one, we need a combination of new drugs,” she says. Tuberculosis is a “very clever” bacterium that has learned how to combat several of our best modes of attack. According to the World Health Organisation, 300,000 unfortunates annually are now catching multi-drug-resistant (MDR) TB, which can overcome two of the first-line medicines, while others are being diagnosed with extensively-drug-resistant (XDR) TB, which can also beat some second-line drugs. WHO says 50 million people currently have drug-resistant TB; one in 10 new infectees turns out to have it. It’s savaging China, Africa, India, Eastern Europe and the former Soviet Union and the treatment for it is barbarous. “MDR patients have to take 13 tablets per day,” she says. “And that’s without the drugs for side effects. It’s really tough: nausea, vomiting, gastritis, diarrhoea, major effects on your kidneys, your liver, your thyroid gland, joint pain. You can have problems sleeping, psychiatric side-effects – important ones like depression, psychosis, convulsions. We’ve had patients suicide under treatment. And that isn’t even XDR. For XDR, we’re forced to prescribe every drug we can think of. Most of them we’ve pulled out of the rubbish bin where they were put 50 years ago because they’re so toxic.”
And this is when the bad thing happens; when, once again, my attempts to quell uncertainty serve only to make
it grow. I should’ve thought of this before I asked the next question. Because, by now, I’ve got the measure of my problem. I’ve felt all along its perimeter; it’s ceased being frightening and progressed to being merely annoying. I was even wondering if I might’ve actually been crawling back to the perfect, untroubled state that I experienced in the sunny hours before all this began. Until I ask Hewison the next question.
I do this because it seems clear I sniffed up my particular pathogen while away on an assignment. And, since 2000, my work has taken me to every one of the places Hewison says MDR and XDR are now “savaging”. So I say, “How will the hospital know if my TB is drug-resistant?” “Well, you only know if you can grow the bacteria, and they can’t grow your bacteria because your sputum test was negative,” says the doctor.
“There weren’t any bacteria in it, so they can’t test to see if it’s resistant. So they don’t know.” I experience that moment again. That curious distance as you fall through space towards a brand-new exploding crisis. “But … that’s not likely, is it?” I ask, desperately.
“Well,” she says. There’s a silence as she measures her words. “It’s less unlikely than you think.”
When the interview ends I put down the phone, rest my chin in my hand and spend a long time just sitting there.
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