After the announcement last week of Angelina Jolie’s ‘decision’ to remove her healthy breasts because of medical advice, and the trillion-dollar industry that is benefiting from her influence, I decided to publish a little story from Sydney in 2003, when I was told I was terminally ill and would never walk again… in support of all those frightened into medical dependence.
St Vincent’s Hospital, Sydney, Australia. Office of Dr S. Brite, Immunology: He clearly had an ironing lady, and had not done anything all morning to disturb the post-colonial violence of his immaculate pin-striped business shirt.
Even though he was a man who dealt, every half hour, with the agonies of the people he was assisting to die …slowly. And even though it was February, in Australia.
Against the deleterious drab of his office, so vividly just one brick wall away from the baking sheet of the Sydney summer pavement outside St Vincent’s hospital where we were acting out this scene, his pin-stripes were a vicious Picasso. The blue; a lap in over-chlorinated pool water. The white; sheets from a morgue.
The fabric whispered to me, its breath hot and sterile with Fabulon, “Help me. I am too terrified to crinkle. I just can’t seem to relax into this.”
Meanwhile, I was asking myself some questions about the stylists who had created this scenario: the theatre of the doctor’s office, the costuming, the ritualised performance that says medical care to a Westerner, but is mostly a display of status over suffering.
Why does a doctor wear a blue and white pin-striped shirt?
Why does he polish his shoes to a sheen way beyond cheerful?
Why does he work in a room like this? With frigid white paint that I can actually see clinging to the concrete walls. With cheap industrial carpet. With bars on the windows. Bars that cast their rib-like shadows against the bars on that frightened shirt, and help me to know, in a most civilised way, that there is reason to be very, very careful. Words spoken here, in this miserable chamber, carry dark, dark magic.
Everything about Dr Brite hisses Warning. I think most people who have ever been ill know this scenario: when you get into the kind of trouble that requires you to climb to any altitude among the ranks of doctors, you can expect to be treated about as kindly as a scabby dog at a luxury restaurant. Even though it’s your plate all the diners are eating off.
Martin Amis wrote that there should be separate passports issued to the sick, because it’s true that you enter a different kingdom when you’re ill. Specialists administer the border, they issue you with paperwork, centralise your finances, seize your destiny with prophecy and chemicals, and are often about as friendly on your arrival as administrators at an abattoir.
Dr Brite was administrating me perfectly, in his uniform of the Immune. And my body, wretched with pain and disfigured as it was, was pumping out that wordless advice from its remaining essential oils that caused my pupils to widen just that fraction, my mouth to suddenly parch. I had come seeking help, but had become aware that I was in more danger here than I had been in my own dying body these last two years..
All my clothing seems suddenly not to fit. Dr Brite issues the same kind of invisible threat that causes my dog Pip to press the Super Hi Speed button on her internal shaker-maker when we visit the vet.
I take the cheap plastic chair reserved for clients in the corner of his office, wrestling with my bra strap and my sympathetic nervous system. Compared to Dr Brite, I am aware that I appear somewhat grubby around the edges. Not quite up to scratch. And besides all that I’m sick and wretched, swollen and covered in welts. I don’t even have shoes on, and my toenails are cheaply polished.
Nevertheless, Dr Brite does me the thrilling honour of completely ignoring my presence for the first five minutes or so. This reassures me that the $100 I am paying for those first five rides of the second hand around the bitter clock are a worthwhile investment; only somebody terribly important and powerful could be so thoroughly rude.
I observe him under his halogen. His wedding ring is new. There is something so threatening about that unmarked band of gold on his soft unmarked hand that I know as soon as I see it that I will never be able to rid myself of the memory of it.
“Now, Mzzzzz Richardson,” he says, spitting out my last name like machine gun fire.
“You’re a very lucky girl.”
On a thread very close to this one, he is standing astride over me, so close I can see the stitching on his tight leather jock.
“You’re lucky you live in Sydney. You’re lucky you found me. There’s probably nobody else in the country who can deal with what you’ve got.”
This, so far, I have found to be true. For almost 2 years I have been shoved deeper and deeper down the wrong kind of rabbit hole, my fingernails by now fetid and thickened to claws by the effort of refusing to fall toward the fate that the experts are drawing up for me.
It had started with sore feet. My little blue tennis shoes one day pinched me on the knuckle of my big toe as I headed out to play Frisbee on the cool dappled lawns of Centennial Park with my boyfriend, who completely ignored my wincing. A month later I couldn’t bare the weight of a sheet across my feet.
Months had ticked by and the problems tricked out and thickened. In six months I was virtually crippled. My feet burned hot, swelled and throbbed. They were eventually deformed into burning twisted stubs that could not bear the weight of even a flip-flop. My fingers turned to badly packed sausages, twisting and curling into grotesque arrangements of mince and gristle. A full blush of circular welts appeared all over my body and all my joy made a dash for the backdoor as I ached and wilted, bloated and heaved while the heavy bones of sickness moved in.
Over two desperate years I did what anybody who has a chronic illness in this country would do. I spent five year’s savings on specialists who pumped me with chemicals. I borrowed next year’s earnings on trips to sideshow alley in hopes of finding a sage among the snake oil salesmen offering what they called ‘alternatives’ but were really just ‘alternative’ ways to spend the same amount of money for the same no result.
Medical doctors from three hospitals had shipped parts of me off to labs as far away as America. They had sat me on their sticky vinyl chairs in their miserable sad rooms and filled me with needles, steroids, dread and despair. Kinesiologists, iridologists, masseuse therapists, counsellors, Ayurvedic doctors, psychics and yoga teachers had laid me out on their massage tables, read my palms and my eyeballs, fed me essence of bluebell, tinctures of bush flower and even with their incense and posters of chakras (and their sometimes quite crinkly shirts), I never really felt safe with any of them either.
Though their fortune-telling offices were decorated differently, their medicine was useless and their rhetoric was mostly tinged with the same superior chill… they mostly wanted me to own that the illness was a result of my faulty personality, and buy their healing stuff.
By the time those years had passed I had discovered the strange fact that whichever specialist you turn up to will diagnose you with a condition that fits his cosmology. If you see an oncologist, you have cancer. If you see a tropical disease guy you will have a tropical disease. If you visit immunology you will have an immunity issue and if you see a psychic you will pay by the minute to discover that you certainly need at least five sessions of regression. I was diagnosed variously with an assortment of troubles:
- Early onset rheumatoid arthritis
- Some kind of as yet unidentified dread tropical illness resulting from inhabiting an untold multitude of dubious backpacker lodges
- Worms – real bad-arse worms
- Flesh-eating creatures living in an organ somewhere and laying their eggs in my skin
- Attention seeking disorders
- Vitamin C deficiency
- A progressive collapse of the immune system
- Karmic payback from having been an Egyptian seer who pissed off the patriachy
- The wrong life
The cure for all of the above according to western medicine is steroids. The cure for all of the above according to the alternative healers: essence of bluebell.
I was an unsatisfied customer, to say the least, and when I had told ‘my’ (now, isn’t it quaint, how we delude ourselves that way?) rheumatologist at Royal North Shore Private Hospital so, he turned to me and said, in his South African accent, “I suggest you learn to bite your tongue.”
On a thread not so far from this one I reached out to my rheumatologist and with my thickened fingernails, ripped his face clean off his skull and spat down his gullet.
Anyhow, back in Dr Brite’s office I am wearing a pretty summer dress. I’ve washed my hair (an excruciating feat with muscles turned to porridge by steroids, twisted fingers and bent feet screaming on the tiles), and have turned up smiling, one more time, despite the long slog of no results and insults I’ve paid his colleagues several thousand dollars for since all of this began.
“To put it very simply,” he says, without looking up. “You have a chronic, serious infection somewhere in your system which at this stage your body is shunting to the extremities; the feet, the fingers, the skin. At any moment this system could fail, causing the infection to settle in a major organ; the heart, the liver, the lung – and in that case, you would not have long to live.
“In any case,” he continues in his alarming coolness. “for now we can manage it with steroids, but you will never walk out of Sydney again, and your career… what is it?,” he glances at my notes, “Oh yes, travel writer – well, you can safely say that’s over.”
As Dr Brite smiles at me I am amazed to notice he does not have pointy eye teeth. His wedding ring flashes a black magic in the sterile light, and I swallow hard as it becomes dazzlingly clear to me – what I have been refusing to accept all along: “You’re all alone on this one, honey.”
These moments are what is known in common parlance as a crossroad. There are three choices at times like this:
- Wander around aimlessly, refusing to make a choice about which direction to head in and therefore choosing the dread direction: nowhere
- Head toward ‘help’
- Head away from it as fast as you can
I chose Path One. For about a year. Wheeling round and round at a place of indecision and denial: a not too bad place, actually, abundant with Chardonnay, Marlborough Lights, chocolate and remarkably fewer friends than one thought they had before become sick.
When a faint whiff of sense passed over me one day while laid out like a bloated whale with a nasty skin infection under a tree at Gunyah Beach, I caught glimpse of my salvation – just a tiny prick of light, no bigger than the eye of a needle – but there it was – the way ahead: give up, let go, give it all away.
And so it was. The cluster of pills I had become dependent on to hold back my sudden death, and the accompanying pills that held back the violent side-effects of those, had made no difference to my health, but crushed my spirit to a pulp.
In this one brief moment where the will to live surfed higher than the steroidal misery I was swallowed in I decided to give them up, to put myself on a juice fast. To follow my own gut. I completely abandoned any attempt to name and cure my illness. I surrendered to what seemed like failure. I found a book about juice fasts and chose one at random. I hobbled like a geriatric to the fruit market and bought beetroot, potato, celleriac. I locked the door, settled in with my brother’s dog, Buddy, and buckled in for a hell of a ride.
By the time I had made ten days of the fast I was so weak and delusional I had no idea which side of the road to drive on. I was shitting straight beetroot and looked grey as a puddle. I had been slaughtered and betrayed, drowned and murdered in a horror of sweaty nightmares. I was pain-free, rash-free and sitting on the other side of chronic illness, completely alone, in silence.
In a strange way, I had the feeling I had just been through my own slow death. On the other side of sickness, the life I had had before seemed very thinly drawn. It seemed far away and dangerous. My friends had mostly drifted away in a laughing cloud of clinking wine glasses, I had seen the central agony, there was no way I could go back to work.
I quit my job, gave away my relationships, my home, my car, my $250 GHD hair iron and retired to the bush, living alone in the wilds, communing only with stars, moon, sun, rain, angophra, she oak, python, itinerant alocoholics and river – I was cured. I was completely without a society.
To celebrate I set off to climb Kilimanjaro on behalf of the wonderful Australian charity for Zimbabwe orphans AFADU. On that mountain I almost died because of the selfish choices of a woman who went on to fashion herself as an icon for charitable expeditions. I made the summit and the return without water, watching two bodies being taken off beside me, sent her out of Africa and was punched in the face for it by our guide. I tasted the blood of action and thought, yes! I went on to make five hi-altitude summits on four continents with all-female teams, raising around $100,000 for charitable projects until all that time with women acting out on mountains threatened to do me in all over again.
It seemed for a while like the heroic end to a difficult journey, but isn’t that the trouble with endings? They grow up to be beginnings, no matter what you do to hold them back.
In 2008, while assisting the extra-ordinary Amazon medical outreach project, Amazon Promise, in the Peruvian jungle from Iquitos I was struck down violently by the same illness. It set on with such ferocity that there in my canoe, with the monkeys screaming as the sunset on the wilderness, I saw Dr Brite’s ring flash gold through the twilight, and the jungle hissed at me in his voice, “you do not have long to live..”
I was traveling then with 15 medical doctors from the United States who I had just witnessed performing all manner of brave miracles on school desks set up as operating theaters, treating malaria, snake bite, axe wounds, cancer and parasites. The team leader, an ER guy from Boston, said to me, “you know it’s like this in emergency: we get three types of people and any good doctor will admit this; there are the ones we can help, the ones who have been taken by a kind of darkness, and the ones who we can fight for. No medical doctor will ever help you with what you have, it is a condition of the soul. What medicine knows about the body is the equivalent of a bucket of water in an ocean. You have to learn to live your life in first person. Find a shaman.”
He was the first truly honest medical man I had met. Including all the ‘alternative therapists’, who were just as determined to push me a cure as their white-coated enemies, but failed to see me as more than a set of symptoms looking for a product.
He walked with me under the thick night sky of the city of Iquitos, and gave me the diagnosis that would possibly save my life, “ask the jungle for help, offer yourself up. There is a hunt on for your soul.”