David Stevens

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Lyme Disease in Australia – living the li(f)e

In Uncategorized on June 16, 2019 at 1:28 am

This blog is meant to be about writing and fun things, not medical issues. However, maybe someone else going through this shit will see it and realise that they are not crazy, so I thought I would repost this.

Most people in Australia are used to a world where you go to a doctor and they are interested in what is going on with you. Australia is a First World nation that invests a lot of public money in health.  Even if the first doctor is not very good, you can go to another doctor down the street. If things are a bit nasty, there is generally a specialist to go to. And if things are really bad, there is still a scheme to deal with it, horrible though everything is. It may not be a surprise to you that cancer is awful. You confront your own mortality. It is painful. There are great indignities with the treatment. There are many terrifying steps along the way. But there are industrial level schemes in place, a plan with every step staffed by expert doctors or nurses or other professionals, who all know exactly what to do, what comes next, and what the ultimate goal is. There is always someone you can talk to. (1) And if there is nothing they can do, someone will say it. They won’t tell you that you are imagining your illness just because they cannot treat it.

With Lyme, there might be say, twenty doctors in Australia who have any idea. One or two may be an infectious disease specialist – I’m serious. So you take your child from GP to GP, who refer them to specialists. Lyme is a multi organ, multi systemic disease, it will attack everything, but not necessarily in a predictable way. Specialists generally know only about their own organ or system. In Australia, they do not know to look for Lyme. So they end up saying: I can’t help you, there is nothing wrong in the area I work in. You’ll need to find someone else.  Sorry, not my job to suggest someone.  You end up where you started. Your child is getting sicker, but you’ve run out of doctors, AND THERE IS NOWHERE ELSE TO GO. There is nobody to turn to. Hospitals tell you not to come back. (A paediatrician shrugs and asks your child, “have you ever thought of killing yourself? I would, going through that sort of pain. Have you tried Berocca? (2)” You leave his surgery asking yourself, did that just happen? Did he say those words? Umm, yes. He did. And we had trusted this guy with all of our babies.)

You end up, after many years, at a particular clinic, in a particular children’s hospital. They deal only in symptoms, not causes, or so they say. You and your child need to live a normal life, they say. So Dad, you have to be the bastard in the family. You have to force your child to go to school, whether they like it or not (3). You have to show Tough Love. You have to keep pushing them, encouraging them, making them stretch themselves. They have to get on with life, despite their symptoms. Meanwhile, we’ll give the child a psychologist to help them deal with the symptoms. But that’s just what they tell you. What is really going on is that they cannot find a physical cause, so there must be a mental cause. Eventually, they say terrible, terrible things to you.  You challenge them on their deception, and they unashamedly admit it.  And you are angry, but you think, can they be right? Have we missed something all these years?  You doubt yourself completely.

Then one day, by the grace of God and His tool, the internet, you find a doctor who knows about this disease, and you do tests – pathology tests both in Australia and Germany;   tests of reactions to treatment; and clinical presentation, and you find that your child has all of these bugs in their body. Call it what you want (4). But in that mix there is borellia and babesia, bartonella, and a bunch of opportunistic parasites attacking a weakened immune system.

No amount of Tough Love was ever going to kill those bugs. The child could not force themselves to school because the bugs made them very weak and sick. All of the things you have been doing have been the opposite of what you should have been doing. You being the bastard, was simply being a bastard. It did not help one little bit.  Your child has Lyme Disease which was untreated for many years.  They also have a bunch of typical co-infections.

You find that many people in Europe and the US have had similar presentations and symptoms.  (Later you find that many other people in Australia have as well.  You are not nuts.  There are many other families out there going through the exact same thing. They start to connect with each other.)  Their illness was caused by the same bugs.  A doctor with familiarity with that could have started treatment earlier.

Then you find that the tests that helped you are not recognised in Australia (5). And you find that if you go to hospital and seek treatment in an emergency, the moment you mention Lyme, weird things happen. These things have really happened to us:

  •  attending doctors actually stand up and leave the room (I am surprised they did not cover their ears and chant “lalalalalalalalala-can’t-hear-you-lalalalalala” as they left.) Really and truly.
  • attending doctor telephones a specialist. The specialist does not leave his chair. He does not see your child. He gives a telephone “un-diagnosis”. The attending doctor tells you “We don’t accept the diagnosis you have”. He’s spent a total of say 15 minutes over a period of four hours with us. The specialist has never seen us.  The other doctors have spent many, many hours with us. We have attended specialists in Germany and the Netherlands and the Czech Republic. We have spoken to specialists in the US by skype. They were all wrong. Everyone was wrong. But the man at the end of the telephone, he is right.
  • We are about to obtain a surgery we need in Australia. The emergency doctor, trained overseas, recognises the symptoms, agrees with the proposed treatment. A senior doctor arrives. Like us, he is a person of a faith. We see his tzitzit hanging from beneath his shirt.  We think he is here to help. He tells us that “Lyme is a bit controversial,” so we should really go to another hospital for treatment. And we should keep seeing our GP who knows about it. But we should leave this hospital. She is not about to die, so she can go home now.
  • Doctors tell us we are wrong, there is no such disease here. (They ignore the contrary evidence. They also ignore that we have travelled to Europe and South East Asia.)
  • A doctor took us into a private room where no one could hear her, to tell us she believes us because she has Lyme Disease too, but she can’t say anything to her colleagues as she wants to continue to practice. She whispers, and writes a name of a helpful doctor in my notebook, before she sneaks out.
  • when we raised issues about strange rashes and blotches, a doctor said, “Parents are always imagining rashes that aren’t there, they probably didn’t occur”.  So I pulled out my laptop loaded with photographs of the rashes.  He was silent, then said, “So Dad likes gadgets, does he?”

As a sane person who has never believed in conspiracies, you find there actually is one. You find that there is politics beyond imagining behind all of this.

You wonder how you can explain all of this to people without sounding like a nut, because it is beyond their experience, they all know that doctors help people, there would be no reason for a doctor not to. (They do not have the experience of doctors denying symptoms that don’t fit facts.)  And when some people say, “What, they’re still not better?” and they look at you, you feel challenged. Am I mad? Have I done enough for my children? Have I been an effective advocate for them? Is there more I could be doing? Is there another doctor I could have found?  Because when all of the authority figures are lining up and telling you that you are wrong, and when what you go through goes against the experience of everyone you know, you doubt yourself. You doubt yourself all the time.

Then you think there is a breakthrough.  The Commonwealth Chief Medical Officer takes an interest in Lyme-like diseases in Australia.  He sets up a consultative committee.  They authorise a scoping study.

The scoping study raises concerns.  There are real issues with it.  There are problems.  You feel that you cannot begin to articulate what they are.  It is the shared nightmare again.  How can you explain it to these people?  How can you find the words to get it across?  How can you begin to say to the scientists and medical professionals, you have it wrong – you have missed the point – of more relevance is this – why are you saying those things?

And then two very sick people produce a document like this, to challenge the consensus and status quo. Despite their illness, they pick the brains of a community of desperately ill people, and they devote hundreds of hours to research and writing. Then they collapse. Then they get up again and keep going. And they collapse again.  But they persist.

The document shreds the medical consensus in Australia. It shows how the clinicians are wrong, and how they have ignored the best evidence here. They articulate the nightmare world of Lyme in Australia, and even though in our house we live it every day, I shake my head and say, how can this possibly be happening? But it is, and it is probably happening to tens of thousands of people. The science clearly demonstrates the medical establishment in Australia is wrong. Studies have proven the existence of the disease in Australia

But, nothing changes. There is no plan in place for Lyme treatment, unlike the systems in place for many other serious illnesses. Denial continues.  The pathologists continue to run the show. They continue to say that a positive result MUST be a false result. The infectious disease specialists say we are all idiots. We can only hope for change, and continue to work towards it.

Politicians become interested. There is a House of Representatives inquiry. There is a Senate Inquiry. Reports come out, supporting patients. But nothing is done. The Health Minister (later sacked/resigned in a scandal) does nothing.

The system is not responding. The medical establishment rouses itself for a moment, simply to go on the attack.

We carry on.

……….

(1) we have all been there – we all have someone in our lives who has gone through this. It is scary and godawful.

(2) I guess he thought the problem was with the B – B – Bounce.

(3) That doctor seems so reasonable to your face. Then when you are not there, your child recounts how they collapsed at school, and how Dad had to come and collect them. The doctor interrupts and says, “And didn’t it feel great when Dad got you, when you left school”. Your child answers, “I was still screaming, but it was on the floor at home, not the floor at school”. The doctor dismisses them with a wave and a sneer. Apparently it was his job to be the bastard at hospital.

(4) There is war in the patient community in Australia about what to call it. It drives me insane. Apparently, if we hit on just the right name, then the doctors will have to admit, oh that, yes, we can see that you might have that. Oh, now we can treat it.

(5) The tests are carried out by internationally accredited laboratories. They have accreditation recognised by the Australian government and have gone through a more rigorous process of accreditation than some local bodies. Australia has accepted the international standard. Yet many pathologists here feel free to ignore that, and to somehow claim that because these are foreign labs, that charge people for their services, they are somehow inferior and making money from misery. I’m sorry, I have not noticed that pathology in Australia is free. And as well-intentioned as it may be, as much of a service to humanity as it may be, does not THE ENTIRE MEDICAL PROFESSION MAKE ITS MONEY FROM HUMAN MISERY?

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Coming sOOn …

In Uncategorized on June 15, 2019 at 5:32 am

My story KAIJU! will be appearing in Fleas on the Dog, on July 1 2019.

Three guesses what its about.

WRONG! WRONG! Maybe …

It is all YOUR fault

In Uncategorized on June 15, 2019 at 4:03 am

‘As a recent essay in Scientific

American scoffs:

Recycling plastic is to saving the Earth what hammering a nail is to halting a falling skyscraper.” Yet the neoliberal doctrine of individual responsibility has performed its sleight-of-hand, distracting us from the real culprit. This is far from new. In the 1950s, the “Keep America Beautiful” campaign urged individuals to pick up their trash. The project was bankrolled by corporations such as Coca-Cola, Anheuser-Busch and Phillip Morris, in partnership with the public service announcement Ad Council, which coined the term “litterbug” to shame miscreants. Two decades later, a famous TV ad featured a Native American man weeping at the sight of a motorist dumping garbage. “People Start Pollution. People Can Stop It,” was the slogan. The essay in Scientific American, by Matt Wilkins, sees through such charades.’

Pollution doesn’t pollute; people pollute.
Guns don’t kill people; bullets kill people.

https://www.theguardian.com/lifeandstyle/2019/jun/14/the-mindfulness-conspiracy-capitalist-spirituality

The final hypotheses of Professor G

In Uncategorized on June 3, 2019 at 10:12 pm

The final hypotheses of Professor G is available for your free reading … pleasure? … at Silver Blade. Just click on the link.

Unhappy in his retirement, Professor G turns his analytical gaze upon the world immediately about him, and discovers more than he would like.

Due to international clamour, constant requests on social media, and pressure each time I emerge from the house from the gathered horde, the story features world famous and universally acclaimed characters from beloved classics and kiddies’ favourites such as The Boulevardier, My life as a lizard, and Mr Cranky.

For English teachers planning to add the story to their syllabus, themes include: mortality; retirement; rats; naps; neighbours named Brian; and Things From Outside.

Coming soon

In Uncategorized on June 2, 2019 at 12:55 am

Coming soon, The final hypotheses of Professor G. [UPDATE: available now, click on the link.)

Professor G has had walk on roles in some of my previous stories: My Life as a Lizard, The Boulevardier, and Mr Cranky. He discovers that even in the tiny universe of his own story, he is not the most important person. Worse, there may be others off-stage, impatient for him to depart.

More details soon.

Among the dead

In Uncategorized on February 10, 2019 at 8:39 am

My grandfather sits in the ruin of his house. It is always night when I am here. The sky is my skull, a low dome seen from the inside. His jaw is strong and held hard, grinding the fossils of his teeth. (Even if he still smoked, he could not. His pipe stem could not be forced between those lips. It would be snapped by those teeth. The end of it would stay in that mouth a hundred years, preserved.)

Wind sweeps the ash. I do not feel the cold. I stare at the strength of that head. I remember bending and kissing that head, like a child’s, as it lay on a pillow. The man I never kissed, who only ever shook hands, even with children. The skull beneath the skin.

That he came back to sit here, among the ruins. He does not decay, instead the house does. Each time I come, it has deteriorated further, taking his place in the grave. The elements do not bother him. If the wind wears him, if water drips him away, leaching away the minerals of him a drop at a time, perhaps it is for the best. Perhaps it is what he desires. As he weathers, mountains are ground down, oceans rise, seas fall. Forests grow and are consumed. The constellations shift, all sped up for him. He is the Time Traveller, he is Rod Taylor in his chair, encased in stone, then freed again. In my visits, I am a shadow. I am the flickering ghost. It is I who am death, I am mortality. We are worn down around him.

He gulps sometimes. The throat works, the jaw moves and clenches. He is biting deeper, getting a better grip on the world. Once or twice he has looked towards me. I stand close. He does not stop me. I am calm in his presence, calm with the nostalgia of grief. The longing for those other worlds I can never visit. Childhood. The past. The lives of others. The drowsy warmth of everything will be alright. The knowledge of grief to come.

That he has returned, and so far, not the others. Preserved in his pride, his inflexible ideas of proper behaviour. The feuds that burned silently within, in his room as he read, as he listened to talk back radio.

It is monochrome here. It suits the grey hair, slicked back along his scalp.

I love him, I miss him, I miss them all. All the faces from the Christmas photographs of my childhood, who no longer gather around the table.

My aunt, white gowned against the window, arms raised and pressing the glass. Could only I see her? I am staring at the house, the others have their backs turned to her. Were the adults pretending it was otherwise? My other grandmother, from the other side of my family, smiling, her lips uncertain, her eyes betraying an unease when I caught them. She knew. We mourned when my aunt left, why did no one tell me she was back? Kept inside, a secret.

All the dead are kept inside, a secret that no one else wants to know. We are all haunted, and sometimes they stare out from the windows of our eyes. They come back, but they are not the same.

My grandfather sits amongst the exposed beams, the drooping wallpaper having outlasted the plasterboard beneath. He has made himself comfortable in the chair that was thrown away long ago. Its return is as great a miracle as his. He is silent. Why do we protest? Why do we bother to rage? The brave new world was always coming, and there was nothing we could do about it. We shall consume the whole world, we shall eat our young, the forests will die, the skies will burn.

There is no moon, no stars, no electricity, no peasant mob brandishing torches, but I see him clear in this night. I cannot think how I first found him here. I think I just knew. He cannot be in this house. It was sold years ago, and rebuilt, and another family lives here.  They have covered the verandah, hung a little sign advertising a business. Still, it is where I found him. Perhaps we are in one of those other twenty four dimensions of folded string. I do not know. I just gaze upon him and sit in his quiet presence.

The dead stare. What vision is imprinted on their eyes? We fear what they have seen.

His wife is not there. Will she come? Nobody told me my grandmother was in hospital. I could not answer the phone. I was freezing in a bath of ice, sitting with a child who refused to be comforted unless someone was in there with him, trying to bring his fever down. Later, when I finally was told, in the emergency ward with her as she, unconscious, clawed at the air, as though prematurely buried and scraping at the coffin lid, I prayed and prayed into her ear, a hundred Hail Mary’s to calm her down, and then those arms rested, they allowed themselves to stop. Thank you God for that.

My child, shaking, terrified in the night. Eventually telling us that someone else had been in the house with us, while we all slept. She struggled to get the words out. Her eventual description: “he was like a cricket man”. Cricketers dress completely in white. She could not see his shoes, for his feet were beneath the floor.

The dead are all inside. How many skeleton arms drag torsos forward through the mud of my mind, skulls drooping, exposed spines drifting away to nothing? How many more bony arms are yet to come? When shall I join them? What shall I see?

Or will death be banished forever, all of us infested us with nanobots that work constantly to keep us fit, keep us happy in our jobs, content in the hell we have made?

These are thoughts I think, when I awake after my visits.

A summer story

In Uncategorized on January 27, 2019 at 2:30 am

Summer time here in Orstraya. Floating in the ocean yesterday in between the waves, all the beach moments of all my life joined together, as though the rest of life is a mundane interruption to that Eternal Now that is me floating, I was reminded of how that is reflected by the end of my story, This Neil Armstrong is not dead. Without meaning to be, it is my (not “the”) quintessential Australian beach story – I will never write a better Australian beach story, than this story which is not about Australia, or the beach. Of course, I hope one day to write a better story, which may be about Australia or the beach. Oh mind, be still.

Straya Day

In Uncategorized on January 26, 2019 at 6:01 am

ALL the beautiful young things are wondering about the place dressed in their swimwear and large Australian flags, so it must be that day again. I was once abused by two bikini wearing teens on this day for not smiling enough (“BE HAPPY! Its Orstrayuh day”) and I will always be grateful that despite the wave of Hulk-like rage that immediately swept over me, for some reason I did not respond. I was pushing a pram overladen with my offspring at the time, and did not notice the two bulky figures behind a tree who were ready to step in with their fists (is that a mixed metaphor, no it is an actual description) to deal with any who sought to disagree with the young beauties / harridans. I remember when nobody celebrated Australia Day, it was just a dusty little public holiday tucked up the back near the start of the school year. It wasn’t the subject of national division that it is becoming, because really, nobody cared much about it. My good mate Stephen used to describe it as “the national day of not working for Australia”. Then along came the 1988 bicentenary, rhyming nation with celebration, and everything went downhill. Just let me have a little rest, is that too much to ask?

FLAG DAY

It was Flag Day

so we wrapped ourselves in our flags

and went to the pub.

Everybody else had the same idea, but.

All the flags were the same

because we are all Flaglanders.

It would have been nice to wrap myself

in the flag of difference

but I was too scared.

Everyone looked the same.

The fun idea had become

A Sad Party Thing.

It doesn’t matter.

The flag unites us.

Our fear of looking different unites us.

All eyes are wary on Flag Day.

Everyone smiles with their mouths

as they lift their beers,

but all those eyes are looking about.

And those eyes are quick.

You don’t want to stand out.

Not on Flag Day.

There are no excuses.

It is not “I pay my taxes” day.

It is not “I am a human being, I have rights” day.

It is fucking Flag Day.

Alright?

You sad party thing

Rejectomancy

In Uncategorized on January 6, 2019 at 4:02 am

Jane Sullivan writing in this Saturday’s Sydney Morning Herald, suggests that writers aim for 100 rejections as a new year’s resolution. She cites an American literary writer being pleased with her 43 rejections in a year, and shellacking (there is a word I have not read in a long time) her rejection slips onto her writing desk. Another writer achieved 101 rejections.

I don’t have many rejection slips as such, though I have many rejections. I have a few written notes from the Magazine of Fantasy & Science Fiction, before they moved onto email. I don’t know that I would want to waste the paper and ink printing out rejection emails. I don’t think I would varnish them onto a desk either, I prefer Stephen King in his On Writing where he refers to sticking them all through a large nail or hook (I’m too lazy to flip through my copy).

Over at Rejectomancy, Aeryn Rudel achieved 100 rejections this year. Aeryn often comments on the tier of rejections, whether a form rejection is standard, or indicates something positive about a story. I confess that I am happier when I get a template 3 response from CC Finlay at F&SF:

Template 1 is the “didn’t grab me” template. The beginning of the story did not grab me.

Template 2 is the “didn’t work for me” template. Your story was good, I read it all the way through, but some big thing didn’t work for me, usually the ending. I know, endings are hard. But the emotional payoff, what you remember most about a story, is how it makes you feel at the end.

Template 3 is the “didn’t win me over” template. Look, you’re probably a pro. This is a good story. You know it’s good. You’re probably going to sell it elsewhere. Maybe I can tell you the idiosyncratic reasons why it didn’t make me all hot and tingly so that I can’t stop thinking about it day and night, night and day. Maybe I did. But either way, you probably don’t care. It’s a no. You’ve already got your next market lined up and you’re ready to send it out again. AS YOU SHOULD.

I am happier because I think “hmm, I’m probably a pro”. I’m not.

Sullivan quotes the same writer as saying that a rejection is a conversation. That is a nice positive spin. Its probably not true, given the extreme likelihood there will be no feedback at all. That is not a complaint – given the amount of reading slush readers and editors have to get through, what time do they have to provide feedback. Sullivan notes the writer “treasures the rejections that come with some encouraging comment, however small”. I used to think feedback is valuable. However, that is not always the case. Some examples: two of my children have a chronic illness, which required many visits to emergency wards when they were little. In one story, I tried to draw something positive from that experience, and channel some of the frustration and set out some of the experiences. A slush reader from a magazine I once respected responded “Story is a mishmash of misery fiction and purple prose”. Well, even if it was, fuck you. (No, I did not respond. I may not be a pro, but I am professional.) I took that to heart, which I should not have done, and would not have done for another story. However, I cannot imagine a universe in which that comment helps. A rejection from the same magazine of a different story later on demonstrated to me why I should take their comments with a grain of salt. I received two comments:

“… really strong narrative voice and prose control.  …  it’s all developed and described quite well”

and

“This piece is unfocused and almost stream of consciousness and difficult to get a sense of what it’s about”

Guess what I learned?  Flip a coin. I am not complaining here, just commenting that feedback is not necessarily useful.

So, how did I go in terms of rejections? How would I go with a target of 100 rejections for 2019? I have no idea whether such things are of interest to anyone other than myself, but here goes.

In 2018, for the fourth time in five years, I moved myself and (this time part of) my family between continents, returning to Australia from Europe. It has been an adventure, but I cannot see myself doing it again. I had three stories published, which in the words of my old parish priest, I commend to your generosity: The gods of the gaps; Miracle Cure; and Baby, cold outside. (The different colour of the text means you can click on the words and be transported to the story. The first two can be read for free.) I wrote nine stories, which was good compared to recent years. And my stories – this new batch and some older ones – were rejected 145 times. So hell yes, I can be rejected 100 times in a year very easily. When a story is rejected, I look at it again, take on board any feedback, consider editing, and then send it out again. As CC Finlay says above, “you probably don’t care. It’s a no. You’ve already got your next market lined up and you’re ready to send it out again. AS YOU SHOULD”. Rejection does not bother me any more, not much. It hurts more to almost make it, to find out I came close. Rejection does not stop me submitting. However, I wonder sometimes if it might stop me writing, on occasion. I don’t know. I think there are enough other forces at work there, that I don’t have to worry about that one!

Sullivan writes, “seeking rejection … encourages writers to aim higher”. Why aim low? I don’t. I understand what she means though – one should not let the fear of rejection stop one form submitting to a market. You have to be in it, to win it, as some lottery ad said some time.

How is this year going? Two rejections. Two submissions.

I did not know whether it would look unprofessional to publish this. It doesn’t matter. But feel free to check out any of my published stories, which can be viewed here.

 

Breach

In Uncategorized on December 31, 2018 at 11:36 pm

Breach #08

Breach