Monday, May 13, 2019

Doctor Google vs the patients

If you ask any suburban family doctor what the hardest part of their job is, then I'm sure that - along with under funding, excessive patient loads, waits for tests and referrals, work load, the burden of $100K student debt and the office politics we all must deal with - they'd mention the frustration of competing with doctor Google. People who, before seeking actual medical advice, have researched their symptoms online, and without the ability to distinguish credible sources from quacks, have come up with dubious self diagnoses from which they will not be swayed. And I get it. We've all seen people online convinced of things that are just not true, who, when faced with the facts, will double down convinced peer reviewed sources are riddled with bias. It must be especially galling for doctors to deal with anti vaxxers, who are convinced doctors are part of a massive global bug pharma conspiracy to force poison on our kids, and won't be swayed from their self anointed superior position no matter how much harm they are shown to be doing.

It can be really hard these days too to distinguish who is and isn't a credible medical source. My job involves helping people on the National Disability Insurance Scheme find support workers. One of the main tasks is making sure that support workers who claim they have allied health credentials actually have verified medical qualifications. This means checking that they are registered with the Australian Health Practitioners Regulation Agency. But not a week goes by without a potential worker claiming they have this or that dubious qualification - qualified aromatherapist, member of the homeopaths society - and when I actually look up the organisation they claim to be certified by, it's an office above a shop in Byron Bay, the only requirement for membership a $200 annual fee giving you a pretty certificate. We don't allow this kin d of rubbish, but I can see how convincing it would be if you don't have the skills to tell a real qualification from a quack one.

So what I'm saying is, I get why doctors are frustrated when patients walk in thinking they have all the answers from a Google search, instead of the ten or so years of education and training it takes to become a general practitioner. 

On the other hand, first off, those doctors are human. They are not computers with all the answers, they have to deal with hundreds of patients presenting dozens of potential conditions in a week. And that medical school training has to covers thousands of potential injuries and illnesses; there's not enough time to cover everything in detail. After a long day dealing with high blood pressure, infections, depression, heart problems, and elderly people with the multiple chronic conditions of a body winding down in its eighth or ninth decade, with the best will in the world a GP won't have the perfect solution for every patient they see in that fifteen minute window.

And this is especially true for those with chronic illnesses. Thanks to innumerable TV medical shows, we imagine that every condition a patient may face can be diagnosed with one or two visits to the doctor, maybe a couple of lab tests, then everything's sorted and the healing can begin. The reality is very different for those with symptoms that defy easy classification. I've been sick for months now, and trying to find answers, and we're not really any closer to a solution. And of course, I've been trying to work out what's wrong myself, because I've been living with this every minute for six months. And this is where I've run into doctor trouble.

In December last year, I started feeling exhausted all the time. I put it down to work stress and Christmas; everything else in my life was going better than it has for many years. I upped my consumption of fresh veggies and hoped it would pass. It didn't. By January, I was sweating profusely in Sydney's humid summer heat, and many days I'd get home from work at 7pm, wipe off my make up and strip down to my underwear, and pass out on my bed until morning. My body was sore all the time, my legs leaden as I tried to make it to the office - which too often I couldn't. All my life I've had a sensory aversion to breezes. But bizarrely, I suddenly craved them, cool breezes being the only thing that soothed my aching body. My abdomen was distended and painful, I ran mysterious fevers, itched and sweated, slept all weekend. What was happening to me?

Photo by Tan Danh from Pexels


So of course I went to the doctor, starting the fun merry go round I'm still on. My regular GP, who I have been with for 3 years and trust implicitly, has taken a year's leave to do further training. So I started seeing another doctor at the practice, an older woman. It hasn't gone so well. 

My first visit, she said it was probably depression, but ran the set of standard blood tests. They all came back pretty much normal. But I was still sick. My blood pressure was ridiculously high; she gave me medication to lower it. It helped a little, but not completely. She thought possibly an STD, and gave me the full battery of tests (and oh man, I'd lost touch over nearly a decade of monogamy. There's stuff out there now I'd never even heard of). Anyway, all good there. I suggested maybe premature pre-menopause? She laughed and said I was too young.

But my menstrual cycle was all over the place, like the rest of me. And on my next visit, she suggested early menopause. Incredulous, I pointed out she'd laughed it off last time. Turns out, she'd only taken the barest glance at my computerised chart, seen I was in my 30s, and decided I was too young for premenopause. On the next visit though, she'd realised I'm nearly 40.

Sigh.

Anyway after reading Gilda Radner's memoir It's Always Something of her experience with ovarian cancer - including a ridiculous delay in getting a diagnosis, said delay probably contributing to her death at 42 - and lots of research of credible sources I mentioned the possibility of ovarian cancer to my doctor. Again, she laughed, stroked my arm (ugh), and said don't worry, silly! You don't have cancer. But I wasn't in a panic about getting cancer, simply raising it, calmly, as a possibility, knowing how difficult it is to get that imperative early diagnosis. By now I was worried - about my doctor. I had an uneasy feeling every time I saw her, and began to suspect my blood pressure was spiking cause just seeing her was stressing me out. She sent me along for an ultrasound (which I paid out of pocket for, for what it's worth in this election campaign - thank God I have the ability now to do so) - which revealed a 7cm cyst strangling my left ovary, ovaries being about 2cm long for scale. It's not causing my symptoms, but isn't helping either. I worried all week what my doctor would say about the follow up and what the scans revealed, as the ultrasound operator really won't tell you anything. My doctor didn't call all week, so I figured no news was good news. I headed in for my appointment. I knew from more reading that 7cm is pushing the upper limit for size where immediate treatment is advised; I can feel the damn thing through my stomach, and it hurts.     

She hadn't looked at my scans yet, but again advised me not to worry. 

It was at that point I decided to switch to another doctor. Someone young, as everyone generally advised. My regular guy was maybe ten years younger than me, a little wet behind the ears when I first started (I mentioned seeing Janette Howard in the pharmacy and he didn't know who that was) but he knew how much he didn't know and, I believe, was willing to accept I'm the expert on my own body, and to listen to my ideas about it (there was a serious issue I had where I suggested a treatment he hadn't used before, and it worked, and we both reflect on it as a success). 

I'm about to go on my first overseas trip in 15 years, which I'm very proud to have paid for all myself without going into debt. So that's taking a lot of my mental energy right now, even as my health ebbs and flows. But I recently read an article from the New Yorker, What's Wrong With Me?, about a woman's experience trying to get a diagnosis of autoimmune disease, and life after. And then I read it again and again. It described what I've been going through so well - the exhaustion, the apathy, the brain fogs, the struggle to work - I genuinely like my job and I hate not being able to do it. The flare ups of pain, and the remissions when you hope that this time it's over for good, until it comes back again. The hope that you'll get a blood test that has all the answers, and the frustration when that doesn't happen. The loneliness, the feeling that no one believes you. Telling work you're sick again. What's wrong? I don't know. And the feeling that you just want your life back. 

There was so much I wanted to do this year. Finish my memoir. Write a stand up comedy routine and try my hand at a few open mike nights. Really get involved in the state and federal election campaigns. But all my energy has to go in to my first priorities - work and my child and cat. There's nothing left over for anything else, and even though it's not my fault, I feel like a failure and the frustration makes me want to cry. 

I seem to remember something about the possibility of an autoimmune disease being mentioned by my previous doctor at one stage. Through extensive reading about autoimmune diseases, I think I've worked out a very likely possibility. And that's why I want to see a new doctor, one who will take me seriously. I don't have a medical degree. But I have a degree, one that at least taught me to think critically and distinguish a credible source from a non credible one, and included several units on the social determinants of health. And I've lived with this condition, whatever it is, for over 200,000 minutes so far. I've had lots of time, when I'd rather have been at work, lying on my bed, hot and sore and bloated, to think about and research what's going on. I've become a reluctant expert in my own condition. I don't want someone who will fob me off, try to console me. I want answers.

For a look at how the system stymies and fails those with chronic conditions that defy easy diagnosis, please take a look at the excellent work of Asher Wolf, who when she's not doing excellent work on cyber security, has posted extensively about her journey with another auto immune condition, Ehlers Danlos Syndromes. EDS has come to some public notice recently as one of the queens on this series of RuPaul's Drag Race, Yvie Oddly, is affected by the condition. But it's still little understood, and how much time does your average GP spend learning about specific conditions such as this?





The responses to this are well worth reading.


As for me, I had to go home from work today when I was too sore to sit in my chair at the office and the computer screen was too blurry to read. I staggered home and passed out for six hours. At least my cat was happy I'm home, but I feel terrible about missing work when I'm about to take two weeks off. I can only hope this flare now means I won't have one while I'm away - but the reality of long flights, jet lag and change in temperature flying from Sydney in early winter to Los Angeles in summer means things are dicey. I've organised travel insurance for the not unlikely possibility I pass out, need an IV, and wind up $10K in debt to the US health system. I don't know what the future holds. I hope my condition can be managed - my life is getting where I always wanted it to be and there's so much I want to do.

When I get home, I'm going to start again with a new doctor, finally trying to get a diagnosis. I don't want to be the know it all; I want us to work together, consider all the possibilities. I want to get better, and am terrified of the alternative, the life I've worked so hard to build being taken away by illness. But whatever happens, I don't want a battle with my doctor. I want an alliance, an entente cordiale, where we work together to finally work this out.

Sunday, March 24, 2019

NSW Election: why was hate embraced with hate?

In the aftermath of the NSW State election, it's easy to get depressed. The NSW Liberal/National coalition has gained a third term of government, ensuring more sell offs of public assets, more cuts to funding for community and human services, enforced adoptions of Aboriginal children in state care, that abortion will remain technically illegal, and we'll all be going to bed early as pubs close and developers take over formerly lively suburbs.

Prescient

There is some good news. The three sitting lower house Greens MPs were all returned with increased majorities, showing that people - in those seats at least - prefer community representation that cares about people and the environment to corporate cronyism and thinly veiled racism. But these returns have pointed to a larger trend; that generally, very few seats changed hands. Labor failed to capitalise on the general discontent with the Berjiklian government, and did not win the swag of seats they expected and needed to win. (The Labor party should change its slogan to "thoughts and prayers", since they have nice platitudes but are useless at actually changing things).

But what has been most devastating to a lot of people is that 8 days after one of the worst terror attacks ever carried out by a white supremacist - a white supremacist from our own state - who shot 50 innocent Friday worshippers at a mosque - so many NSW voters have turned around and voted for the (Elephant) Shooters party, who want to dramatically relax our gun laws, as NZ tightens theirs in the wake of the massacre; and One Nation, who peddle a line of racism and hate.

How could this happen? How can people turn towards the ideology which allowed for the slaughter in Christchurch, as the funerals continue? I don't think the answer is that complicated. There are always those who are overt in their cruelty and racism, the ones who cheered the shooter on. These people need watching, but I have to believe they are a minority of us.

The real problem with racism we have in Australia is the covert, insidious kind of racism. And if you've ever tried to argue with someone who believes that Muslims are a criminal threat to Australian society, or that climate change is all a scam and the climate is always changing all on its own, you know facts don't make them change their minds. They dig in. They double down. Cognitive dissonance sets in; feeling under attack, they dismiss the facts as lefty bias and become more sure of their beliefs.

It would be nice to think that the Christchurch atrocity caused some soul searching on the right, reflection on how the message of fear they spread fermented the toxic soup of hate that lead to the massacre. They didn't, though. It's hard to admit you're wrong. And they're afraid. Not of right wing terrorism, but that following the massacre, laws will be changed to take away their guns, to remove the right to bigotry they trumpet as free speech, to increase Australia's intake of asylum seekers. The massacre is all about them see, and they don't want to change, so they voted for the parties they believe will protect them.

And it's depressing as hell.

Tuesday, February 26, 2019

What's in your handbag: 2019

Back in 2004, struggling for ideas about what I'd put in this blog thing, I thought it would be fun to make an inventory of the contents of my handbag.

Tonight, as I made one of my semi-annual tip-outs of my bag to get the debris out, I decided to see what changes age, income, technology and motherhood have made to my daily carry. And it turns out people love to know what other people are lugging around. So...

What's in your handbag, 2019

A large and sturdy leather satchel I actually acquired second hand at St Vincent de Paul (so I don't have to feel directly responsible for the skinned cow) and which came up a treat with some polish and elbow grease.

A pink eel skin (?) wallet I bought from Etsy. It's actually falling apart a bit and I've got a wallet I bought on the recommendation of the Buy It For Life subreddit arriving in the next little while. It contains my driver's licence, medicare card, ATM card and again a bunch of other cards. No cash. This isn't for any reason other than I'm lazy and forget to go to the ATM and get any out and you don't really need it anymore do you? when you can just use pay pass every where.

A fluro orange glasses case containing my prescription sunnies, which I discovered is a fantastic colour for locating the thing in a hurry at the bottom of your bag in dim environments.

Keys to my house, another house... and an anonymous key I'm too scared to get rid of just in case.

An A6 Leuchtturm lavender gridded notebook.

My Opal, in a purple holder with a hand strap which is super useful for travelling on crowded public transport.

Mr G's Opal, which was in a holder till he chewed it open.

A Lamy Vista with a F nib, loaded with J Herbin Poussière de Lune ink.

Tube of blistex.

Tube of cherry chapstick.

A little bottle of hand sanitiser the label has come off of.

A little pink tin containing my ear buds, they're white and by Phillips is all I remember, but they've given me 2 years of faithful service. They're held by a little bunny cord wrap I got in Chinatown I think.

I got a picture of the bunny. The things I do for you people, honestly.

My make up bag. I've lost so many nice/fancy make up bags over the years I now use a dead plain thing I got from Kmart and it seems to be doing the trick cause I haven't lost it yet. It contains...I won't bore you by naming each matte liquid lipstick, but there were six. Comb, emery board, sheet of imflac, pressed powder. I don't go anywhere but work so I don't carry much with me.

And now we get to the hall of shame. This is the stuff that has accumulated:

A flyer for an adult acrobatics class which I considered attending for 0.3 of a second till I saw it was at 8am.

One of the flags they put in your burger at Bar Luca.

A "First government house" penny from the Museum of Sydney, the provision of which is somewhat odd since we don't have pennies.

3 of those little hand wipey things they give you at food courts (still in their wrappers, I'm not that icky).

Wrappers from Jolly Rancher chews. Only two.

3 perfume sample cards, all from Estee Lauder for some reason.

The little insert they put in with the Happy Meal toys.

The tag from a Beanie Boo. (But no actual toys, not even a bit of Lego).

Not in my bag, cause I'm at home, is my phone. A Galaxy S9+. I like it fine, if only it were a little bigger.

See what's not in the bag? Cigarettes, cause this May will be ten years smoke free.

A most satisfactory 15 years of progress.

Saturday, February 02, 2019

The fantastic day I didn't have at Wet n Wild

So this week I went to Wet n Wild, Sydney's only water park, expecting and hoping to have one of the best days of my life.

I did not.

I've been wanting to go to Wet n Wild for years, ever since it first opened in Sydney. I love water slides. I don't understand how other people don't love water slides. If it were up to me, there would be water slides in every suburb, just massive towers along main roads as though they were a service station or Officeworks. But there aren't. So I had to go to Wet n Wild. 

But whilst I happily do most things alone (it's that or stay home with my collection of talking potatoes), going to theme parks alone is one thing that's beyond me. It just seemed too sad. I needed someone to go with. Unfortunately none of my friends wanted to going to a water park with me. My friends generally are the kind of people only inclined to go places that are indoors, semi dark, and air conditioned. You should see their faces when I ask them to go bush walking! And if you do see their faces tell me, because we communicate exclusively through messenger apps; I haven't seen any of their faces in years. I wonder what they look like now?

But if my friends don't want to go, that's okay. I can make my own people to do stuff with me. Unfortunately the person I made, like all new people, started out rather small and with no control over his bodily functions, and I had to wait several years for him to get big enough to go on water slides with me (my attempts to speed the process up by giving him cake met with unverifiable results due to sample size). Finally this year, he was big enough. And he certainly seemed keen. He likes water, and I even took him to some smaller but still substantial water slides at Manly to make sure he could handle it without getting freaked out. No problems. We had a kid who was good to go to Wet n Wild.

There was also the matter of being able to afford it, which I couldn't for years, but now that I'm working I can Do Stuff. So tickets were purchased. Hey G, remember all the times I told you I was busy with uni work? It was all for you, so I can afford to take you to places like Wet n Wild. (And does your father take you to theme parks? No, he does not. If you think marriage is a constant battle for moral superiority, try getting divorced. It's a blood sport between you and the person you once gave your whole heart and life to and now don't want to share a word with. But that's another story). 

So I planned our trip. Rather than being located in an area designed to attract tourists, Wet n Wild Sydney is in the far western suburbs of Sydney, not far from the site of Sydney's now defunct and much lamented other major theme park, Australia's Wonderland (and I bet you didn't know that the song is about me. My body is a wonderland - in the 1990s everyone wanted to get in but now it's an abandoned wasteland). Incidentally, the final CEO of Australia's Wonderland, Stephen Galbraith, blamed the closure of the park on: the September 11 attacks, the 2002 Bali bombings, the collapse of HIH Insurance, the SARS virus, the bird flu virus, "consistent losses" on the Asian financial crisis, the collapse of Ansett Australia, the Iraq War and the 2003 bushfires and he might as well have kept going with a list like that and added political correctness, Y2K preparations, rodent infestation, ennui, pickles on Big Macs and ring around the collar. Anyway the point is, Wet n Wild is in the middle of nowhere.

Generally in NSW, there are buses. The might only come once every two hours, they might be over crowded and require you to transfer to get from your house to the city 3km away, but generally if there are more than a handful of buildings somewhere, eventually a bus will get there. And I'm the public transport whisperer. I can master routes, time tables, networks, lines and ticketing faster than you can say why bother just use an app. But despite my extensive research, there was no bus going to Wet n Wild. I seem to remember their website once promised a shuttle bus to a major nearby train station, but no longer. The best they can suggest now if arriving by public transport is to get an Uber or taxi from the train station. So that's what we did. I hate approaching taxi drivers and asking if they'll take me where I want to go. It makes me feel like...well anyway, I just don't like it. It didn't get any better as we settled into the first cab off the rank and G said to me "you sounded so strange when you asked for the taxi." Thanks kid. I brought you into this world and I can take you out.

Like any sensible person, I purchased our tickets in advance and had them on my phone's screen ready to scan as we went in. No queuing with the plebs for us, we're VIPs. Except after the (long) queue to get your bags checked by security, we couldn't get in the normal way because...my phone (a Galaxy S9+ for those of you playing at home) was too big to fit in their scanner. We had to walk over to the ticket office, queue again, have our electronic tickets verified manually, then take the wrist bands we'd been given and get back in the first queue once more. Okay, settle down, we told ourselves and each other. We got off to an irritating start but this was still going to be a fantastic day! 

Oh. Two of the four water slide towers are closed today. Half of the major slides are out of action. Well...okay. We can deal.

After changing and lathering our 50 and 100% Irish skin respectively in SPF 50+, we needed a locker. I knew the lockers would cost money to use, everything does in a place like this and I'd made my peace with that. But arriving at a bank of lockers, there were no instructions, no automatic machines or indications how one might pay. G was hot, had already been through a long train trip and a lot of queuing and wanted to hit the water. And I couldn't find a staff member to assist (this was to become a theme throughout the day). Finally I saw, at great distance, one of the apparently five teenagers who worked in the park. She directed me to a kiosk at great distance, where for the moderate sum of twelve fucking dollars who do these bastards think they are I was granted a day's right to use of a locker.

The first locker I tried didn't work. I could put our stuff in it but couldn't get the door to stay shut, fulfilling the "er" part of its brief but not the "lock" part. When I managed, after another lengthy expedition, to locate another staff member to see if I was doing it right or what, they determined that all the lockers in that bank were broken and lead us to another distant corner of the park to find a working locker.

We grabbed a couple of photos - just as well we did it then, cause this was just about the last time I'd smile that day - stowed the last of our belongings, and set off to have fun.

Having theoretical fun. Also I apologise for misleading anyone about my legs; they are patently not "okay". 

But now I was blind. Understandably, you can't wear sunglasses on the water slides, and with no one to look after my prescription glasses whilst we went sliding, I left them in the locker. But the melanin my ancestry has given me is suitable only for drinking somewhere cold and drizzly, and on this very sunny day, I literally couldn't see. My eyeballs still feel burnt 3 days later. My advice if you have expensive sunglasses and this post is making you think "hey, a day at Wet n Wild sounds neat!" is to buy a cheap pair or two you don't mind losing to carry with you on the day. Meanwhile G began to sneeze. He inherited from his father the propensity to phototonically sneeze photogenically sneeze that thing broken people do when they sneeze when it's sunny.

We managed to find ourselves in the queue for a water slide. And find ourselves we certainly had time to do, as given it was the last day of the holidays and half the slides were closed, the queue for this one was well over an hour. Running along side the normal queue was the express line, where people who paid 150% of the admission fee for the privilege could zip right to the front of the queue, so at least you could occupy yourself during the wait time feeling resentful and wishing bad things would happen to the express pass people. Back in the long queue I was sure we were being overtaken. Finally we reached the top of the queue for the Double BowlsEye. This was what we'd been waiting for! I tapped my band to indicate we wanted an action photo of us on the slide. We climbed on the raft. I was seated in the backwards position and missed the whole experience cause I couldn't see where we were going.

Bu now it was time for lunch. In the early days of the park, Wet n Wild notoriously didn't let you bring your own food, but even as a 14 year old on rare family outings and with my bar set very low, I knew the best chefs are rarely falling over each other to work their magic in amusement park kitchens. Luckily now you can bring your own, so we had a little picnic that turned out to be the best part of the day - Wet n Wild I will say does at least supply deck chairs under shade umbrellas for free, once you've paid the costs of entry which includes the costs of all those slides closed today.

When I tried to put our stuff back in our locker after lunch, it wouldn't lock shut. Another hike to find a staff member, who moved us to locker number 3.

It was now getting on for early afternoon. Time for another water slide. This queue was even worse. And it was hot, and exhausting, and G began to cry, not because he's a whiny spoiled kid - he isn't - but he was dehydrated and tired and overwhelmed and he wanted to go home, but out of a stupid sunk cost fallacy I convinced him we should continue queuing for what turned out to be another excessive period of time so we could spend another what felt like 8 seconds on a slide. Then I made sure we sat down and I got plenty of water in him and bought him an ice cream. One of the luridly coloured frozen confection treats known as a golden gaytime, which in a minor but predictable disappointment promised to be an ice cream sandwich on the poster, but was a regular old ice cream on a stick when served. His nose and eyes were now running uncontrollably - turns out the earlier sneezing wasn't just the sun, but a heretofore unrealised allergy to chlorine.

In search of some more sedate fun without an hours long queue, we went to the Dinosaur lagoon, which invites you to relax as you float in a soft tube around the half kilometre lazy river. Sounded like just what we needed. Alas, acquiring the tubes meant tackling the odd tube handover system where you needed to stand at the end of the river, taking tubes from the people who'd just completed the course. People who, in many cases, wanted to go around again or hadn't managed to get a tube in the first place. This put me and G at a distinct disadvantage against the family groups who were able to acquire the scarce tubes by forming human chains, tackling the course finishers and half drowning them until they handed their tubes over. We waited so long for the tubes we almost gave up, but I was determined to wrest some fun from the day, and we resorted to pathetic begging (Wet n Wild was resembling sex in more unpleasant ways than one). But it occurred to me, as we stood in waist deep water, surrounded by reeds, reaching our arms out to wet strangers saying "tuuuuubes....tuuuubes?" that this was about as relaxing and fun as the zombie apocalypse it felt like we were trying to survive.

I convinced G to give the water slides one last try. As we joined a queue, he said "Mummy, I think I'm going to be sick" and promptly was, lavishly all over the path, golden on the way in and golden on the way out. (So much for the control over bodily functions). As I desperately tried to flag down a staff member, G remarked "I guess it's not a myth that you shouldn't swim after ice cream". The first squeaky voiced teen staff member I managed to find didn't have a radio. The teen with a radio I did manage to find another few dozen metres further on didn't know how to contact the cleaners. I left them to it to attend to my son and once he was stabilised and cleaned we went home. On the way out I scanned my smart band to get the photo of us on the first water slide. It wasn't us.

Back home the zip on my bag got stuck and I had to cut the lining in order to extract the smelly wet swimwear contained within. I can't sew it back up, cause I can't sew. I was terribly sunburnt, despite all the cream. I don't think I've been really sunburnt for a decade, a decade I've managed to be an Irish person in Australia with Vitamin D deficiency. Anyway, I'd forgotten how much sunburn fucking hurts.

I spent five years and...I won't tell you how much money, but including Ubers, locker and my perfectly nice tote bag, on top of the tickets, it was a lot, to go to Wet n Wild, and I got to try out more lockers than I did water slides. And given I've vowed to never go again, unless some future paramour wants to drive us to the door, pack a gourmet picnic and pay for express passes, that was my total experience at Wet n Wild. It was a purportedly fun experience that I didn't even get to experience once.

Sunday, January 27, 2019

Looking good

A recent opinion piece in The Independent rehashed a well-worn premise: that wearing make up is anti-feminist, that choosing to wear make up is conforming to the desires of the patriarchal system that dictates how a woman should look.

I don't agree. And whilst the article's writer, Julie Bindel, did raise some important points about the chemicals in one's makeup and the potential for lifetime harm (although everything in modern life is synthetic chemicals, and you can get paranoid trying to keep up with it all, or you can just sort of try to get on with things). And whilst we are constantly pounded with messages from the media about how we should look (and what we should spend money on to get that way), everyone wants to make themselves look better. If you really eschewed make up because it's uncomfortable and you won't conform to media images of how a woman should look, then surely you'd apply the same principles to your clothes, wearing only the cheapest, shapeless and comfortable garments you could find. But I've never met anyone who does that. The most intense anti-makeup feminist will still throw on some necklace she likes that goes well with the top she's wearing. Make up, to me, isn't much different from that. 

I'm not a liberal feminist who believes any choice a woman makes is a feminist choice; our liberation is all tied up with each other. And I don't believe my choosing to wear make up is a feminist choice. But it's not anti-feminist either. It's not really connected to my feminism at all. It's something I choose to do, cause I like it, for two main reasons. First, as a kid I was fascinated by paints and colours - still am - and make up is an extension of that. I enjoy the process of painting my face, I like getting in with the liquids and creams, squishing everything around. It soothes my sensory issues, it's a pleasant part of preparing for the day.

But I also do it cause I don't like the way I look without it. I'm mildly aware of how others might see me, but I'm mostly concerned with how I look to myself. When I look in the mirror, I want to see pretty. My skin is very red naturally, I have thin lips, and when I see these things in a reflective surface, it ruins my whole day. As the line goes, I'm not doing this for some man who doesn't know the difference between Ruby Woo and Russian Red (although I'm really into matte lip creams right now, and anyway my MAC lip colour is Diva). I'm doing it so I look good for me. I'm not doing it to attract a mate, but so when I look in the mirror I get as close to the cross between Victoria Frances model and porcelain doll thing I go for.





















These photos are from the day of my uni graduation. 40 minutes of make up, and I think it was worth it (although it took me only a few days to work out that short fringe was a mistake I shan't be repeating). I stopped wearing make up unless I was going out for the night for about ten years, but I'm back on it now, and the hell with it, it's just what I do.

There's been a pretty major shift in my wardrobe lately, too. For reasons too complicated to delve into now, about 2012 I seriously looked into conversion to Judaism, which being me involved reading everything I could find. And although I was never looking to convert Orthodox, I was intrigued by the Orthodox notion of tziniut, the laws of modesty, intended to "protect our souls from assault from a coarse world". The laws themselves cover a great deal of issues of mindset and behaviour, but for women the jist of it is skirts only that must cover the knee when you sit down (experience will teach you this means calf-length), tops that cover the collar bones and elbows, and for married women, covering their hair. reserving sexuality for the home, reserving a woman's body for her husband

As grossly anti-feminist as this no doubt seems, the idea struck a chord with me. I'd had many engagements with a coarse world before I met my then husband; this seemed like something I could give him now, that now my body was reserved for him. I modified the guidelines slightly for the Australian climate; but for many years I dressed only in skirts that covered my knees and tops that covered my shoulders and cleavage. That was it. No sleeveless tops, no shorts or short skirts; even at the beach I wore a long sleeved swim top and a swim skirt (I saved a fortune on sunscreen).

It was only recently I came to two realisations. I was shopping for clothes and automatically applying my mental filters about too short, too low cut etc, when I thought why the frilled hemline am I doing this? We've been separated for 3 years and I've seen other people; who am I saving my body for? But more importantly, whilst it's been a relief in many ways to cover myself and all my problem areas - which is basically all of them - I realised recently I have quite nice legs. They're not spectacular, and they only go up as far as where the abdominal fat begins (which seems to get lower every year - no wonder I'm terrified for the future; every year sea levels rise and my love handles fall). But I walk quite a lot, over 5km almost every day and usually carrying stuff, and my legs are reasonably firm and a nice shape and anyway, I like them. Why was I covering them? I should show them off. I'm not quite ready for shorts yet, and modesty aside I'm not much of a shorts person. But I wasn't doing myself any favours cutting off one of the nicer parts of me in dowdy long skirts, so I've been venturing into skater skirts lately.

Not that it's been easy. I don't know what it is with me and retail. Sure, I could shop online, but I'm impulsive and shopping online in Australia often means waiting 1-2 weeks even for items which you bought for Australian retailers that purportedly had them in stock. This is why malls in Australia continue to thrive even as dead malls scar America. Saps like me keep going there. So I hit H&M in the vain hope they'd have something in my size. They did; I saw one size 18 item in the store, a pair of cream trousers I'd never ever wear. That was it. One size 18 garment. And I looked through lots and lots of racks after that, hoping they might have clothes I would wear in a size 18 but they didn't. I suspect the trousers were a decoy they put in to get my hopes up. 

Sunday, January 20, 2019

Second Life

To celebrate several life events and also because I haven't been overseas in literally fifteen years, I'm planning an overseas trip in the middle of the year.

Of course, it's a somewhat daunting prospect. I've never done this by myself before; all my previous trips were organised for me. I have to confess I'm even a little scared. Every morning at 10am I eat a pink lady apple. It doesn't matter if I'm at work or going out to brunch or that right now being summer there's a vast array of much cheaper tropical fruit available. It has to be a pink lady apple and only a pink lady apple. So yeah, how am I going to manage if I can't find them? I'm picturing myself freshly arrived in Los Angeles after 15 hours in economy and scouring supermarkets in that city famously hostile to walking and public transport, trying to find pink lady apples, getting hot and dusty and semi-delerious, bursting into tears and giving up, or worst, settling for red delicious apples, whose name we all know is a filthy stinking lie.

I'm sure you can understand when I say I've had frequent thoughts of cancelling the trip altogether, and staying here with my geriatric cat and duck down pillow and shower I can get flowing just so by muscle memory and the new 55 inch TV I just bought me and my pink lady apples.

But I know I have to go. For so many years I dreamed of trips I couldn't go on. This, I can do. It doesn't need to be the perfect trip. I'm looking at round the world fares, planning out the stops I could make. But unlike the 20 something backpacker planning out their big overseas adventure before they settle down to career, serious relationships, possible children, I don't have to see everything now. There can be plenty more holidays in the future. For children and marriage aren't in that future. All that is behind me now.

For most people who go down that path, the days of freedom from the mechanics of family life don't come until you're in your fifites or sixties, at which point you call yourself a grey nomad, cash out your super to buy a camper, and spend the rest of your days roaming Australia and the world annoying everyone you cross paths with by doing 95km/hr in the right hand lane on the freeway, delaying busloads of passengers by treating bus drivers as mobile tourist information centres, blocking aisles with your luggage and talking very very loudly in every cafe you darken with your presence. "This is my time! I deserve it!" say you, a member of the generation for whom everything has been yours, and you haven't deserved any of it.

But what do you do when family life and all the hopes and dreams that went with it are take from you not in the natural course of things in your fifties, but suddenly and painfully through divorce and custody losses in your thirties? What do you do with yourself? You mourn, you grieve, you tear your hair out, you bang your head on the carpet. All of that. But eventually, eventually, with psychiatric care and medication and the damned healing properties of time, you start to get to a point where you can live with it, can even enjoy your new life.

For I have been given a strange gift. It has arrived in separate packages I couldn't always appreciate at the time, and I've had to assemble it myself, but here it is nevertheless; I have been given a second life. It has arrived through grief subsiding and a permanent place to live and a good job and learning, from the work of various alumni of RuPaul's Drag Race of all things, to embrace being the most and best me I can be. So I've decided what I'm going to do with this life is no longer suppress all the parts of me that I locked away for so long, because of the rigid standards I was raised with and society's expectations and the little (normal) voices in my own head telling me what is the proper thing to do and being mostly closeted most of my life and living my life in a permanent state of exhaustion masking my autistic behaviour without realising what I was doing and all the goals, hopes, dreams, dignity and joy I sacrificed in futile attempts to make other people happy - I am done with all of it.



I decided that, since my attempts to be normal and pleasing didn't really work out, from now on I am going to live life how I want, never harming other people, but not caring what other people think or what is the right thing to do - especially the dreaded right thing to do at my age.

So far, it's working out quite well. Take my bedroom. It's the bedroom i always wanted growing up but never had, and now I have it, and after waiting all my life I finally got to paint my bedroom purple, and there are butterflies and Victoria Frances prints on the walls, and I don't care if it looks like a moody (but very tidy) teenager's room. There is no one to complain about my Living Dead Dolls in the lounge room, or my morbid posters and postcard wall, no one to pressure me into throwing away my art supplies and books, no one to mess things up. (Mr G comes over on weekends, but he's very sweet about tidying up).

I will wear a Hello Kitty t shirt and glitter eyeshadow to work, and no one minds. Three months in, and I'm already the office eccentric - technically very proficient, excellent industry knowledge, very caring, but a strange soul nevertheless. My Drag Queen Funko Pops are arriving tomorrow, being sent to the office cause, well, we've discussed what my home postal service is like. I explained to my supervisor/friend that I'm happy for people to look, but if anyone touches the dolls, I'll reject them like a deer.

You'll what?!, she said.

You know, I replied, deer. If they smell human on any of their fauns, they reject them. Abandon them and leave them to die.

She said she'd love to get inside my brain and see how it works.

I told her it's a nice place to visit but she wouldn't want to live here.


Sometimes, fully embracing my identity as a queer autistic person in my late 30s - after a lifetime of trying to shove myself into the boxes society set out for me - feels like a giant playground. At other times, it feels like - nah, I'm kidding, it's always cool. The fun and freedom - was this what childhood was supposed to be like? I mean, actually admitting to myself and the world that I want to date women and putting myself out there and doing it hasn't always worked out so well, but the point is I am doing it.

But whilst I might be boring my friends stupid with the bisexual memes as they think "it's a sexuality, not an identity" and flap my hands if I get excited and wear metal t shirts paired with polka dot hair accessories to meetings, the true difference is in my own head, where you can't see it. But it's there. I have given myself permission to be weird, permission to not feel guilty if I do something nice for myself, permission to put myself first, permission to be happy. It's too late for all the opportunities I missed so far in life but it's not too late to do things differently now. I'm free. I have been given that rare thing; a second chance at life.

Of course, the trauma I have survived will always be with me. I can't separate one part of myself from another. Aspies can be quite suggestible. So can emotional abuse survivors. (Is there a word that's not victims or survivors. I am "a victim" but that term is so loaded. I'm nothing as thriving as a survivor. Or maybe I am). There are days when I'm hit with torrents of despair that make me think oh shit, I thought I was over all this. But I know now, that it is normal, that it will pass. I reach out to other survivors online and we assure each other that the brain takes time to recover. You will be all right. 

There's nothing about living as my true self that's problematic. I could say I'm lucky to work for a queer friendly company who make allowances for all my aspie ness, but every company should be like this. (But for now, I'm lucky). Mr G knows that his Mum isn't "normal". Do you want a Mum who wears capri jeans and yells all the time? He's got a Mum who goes on waterslides with as much glee as he does and scoots her booty across the lounge room and dresses him up as a drag wolf warrior. He's happy, and it's what he knows. When he's with me, he comes first. When he's not, all bets are off. This is the beginning of the rest of my life.

I'm working with what I've got. I didn't choose this path, but I'll walk and skip and flap my hands and stare vacantly along it anyway. When life gives you lemons, make lemons your thing. Tell the world you're all about lemons now. Wear lemon hair accessories and post lemon memes and talk incessantly about lemons and put up lemon posters and live a lemon life. Have meaningless flings and finally get around to giving stand up a go and decide that's it, this is the one haircut you're sticking with for the rest of your life and if you want to try something different, you'll wear wigs. After trauma, things will never be the same again. Use what you've learned and make them better. And if you're nervous about spending thousands of dollars travelling alone, just buy a VIP ticket to Drag Con before you've even sorted your passport out oh God what have I done. 

Thursday, January 10, 2019

Hungry for the good old days

Recently some colleagues and I were discussing food. They were mostly younger than me, and from ethnically diverse parts of Sydney, and they spoke of the food they grew up eating. Lebanese, Italian, Vietnamese, yum cha, festivals, neighbours sharing dishes from their home countries, dumplings for Lunar New Year or sweet sticky baklava; a wonderful array of flavours and textures that made you grateful for just a tiny slice of the many great goods immigration has brought to Australia.

The food I grew up with? Not so much. A statement you'd express literally when served some of the dishes that predominantly featured in the Anglo-Celtic inspired cuisine of Australia in the 1980s, which I grew up eating. I pretty much hit the "no thanks, I'm full. Really." jackpot when it came to the food I grew up with. My parents were immigrants - from Ireland, a nation noted for its rich literary heritage but where, alas, for centuries we were either being starved, or too drunk from writing to care what we ate. My father was a traditionalist, scared of anything new and rigidly adherent to routine; my mother hated cooking and had marked issues with food. We lived first on the Northern Beaches, then moved south of Newcastle, so the cultural influences at play were pretty much when white met bread. The neighbours would be having a BBQ chook, pasta salad and soft white bread rolls. We would be next door having a BBQ chook, pasta salad and soft white bread rolls.

I'm sure it won't shock any of you to learn the menu prominently featured mashed potato. There was also a heavy rotation of frozen food. We had mashed potatoes and grey, crumbly chicken nuggets; mashed potato and grey, crumbly fish fingers; mashed potatoes and Findus crispy pancakes (I love those and have missed them dearly ever since they were withdrawn from Australia); mashed potatoes and lamb chops; mashed potatoes and - oh god, the PTSD of writing this - lamb's fry, aka liver, which is so revolting that I'll eat most anything today but the smell of makes me flee the room. 

But those were just the meat and potatoes of our diet. For special occasions, in would come to play the crown jewels of white Australian cuisine. When my mother got to cooking, we would enjoy such treats as:


Apricot chicken, involving tinned apricots and French Onion soup mix





Coronation chicken, involving cold BBQ chook, Keens curry powder, and more French Onion soup mix


Shepherd's pie. Possibly more French Onion soup mix; definitely more potato. I had a hard time finding a suitable image for this. All the photos I saw looked golden and enticing, nothing like the grey lumpy dish of my childhood which I have never made since and - unless forced at gunpoint by some bizarre robber who breaks in and forces me to prepare an bland English main course -  will never make as an adult. I'm not curious to see if I could do it better. Shepherd's pie? You and me, we're through.

Worst of all - except for the liver - was ham steaks, cooked under the grill, each served with a pineapple ring on top.



I began to be disturbed by the fact that the ham steaks had the same perfect, round shape as the pineapple, and wondered what weird perfectly round pigs they came from. It was at about this age when I decided I wanted to be a vegetarian. I was told in no uncertain terms that whilst I was under my parents' roof, I would eat such food as they saw fit. It was probably just as well. If the meat we ate was bad, the veggies were even worse. The bland, mushy peas were all I would eat. Other veggies in the rotation were boiled cauliflower in white sauce, the broccoli which was boiled for so long I thought my mother was trying to cleanse it of evil spirits, and god bless and save us the brussles sprouts which thank god only made an appearance at Christmas and ruined more than one due to the arguments they caused over eating them.

Our taste horizons were not expanded at restaurants, either. Going out to eat was less of a thing in those days, and we kind of lived in the middle of nowhere, but there was also the fact that my father was also of the view that children didn't belong in restaurants. There was a local Chinese place, which my parents regarded with suspicion, but which would have at least allowed me to sample such suburban Australian Chinese delicacies as honey chicken. We did get to go to Sizzler and Pizza Hut occasionally, and boy were they an occasion; excited beyond all sense by the wonders of the buffet, the 30 minute car trip home from Sizzler was not a pleasant experience for anyone, and I would spend much time after we finally returned home groaning in a darkened room.

Please don't think, however, that our lives were restricted and wretched. Sometimes we got to go to parties. Or at least, backyard barbecues. For the uninitiated, let me tell you how an Australian backyard barbie works. Unlike in most countries, where it is beholden on the host to provide the utmost hospitality, if you are invited to an Australian backyard barbecue you are expected to bring all your own food and grog. I don't know why, but that's what they do. Most of the time, this means sausages for the kids, cheap steak for the adults, endless onions, and more pasta salad and soft rolls, if not a loaf of Sunblest bread (white, 60% air), which the hostess would remove from the bag to slather each slice in margarine, before returning to the bag.

So what do the hosts provide at a barbecue to deserve the title? Well as well as plastic plates and cutlery and a sliver of space on the barbecue until the alpha male of the group takes the tongs from the host and starts turning everyone's sausages*, they did offer a selection of delicious nibblies.

Welcome to 1980s Australian party food.


Party

Adorably, Coles still sells a platter of old style Australian nibblies. Cubed cheddar cheese, rolled up ham, chopped cabanossi and twiggy sticks. (It's lucky I wasn't a vegetarian or I'd have starved to death). The Coles platter is however missing the pineapple chunks and cocktail onions I remember as being a fixture of party snacks. Whether it was a tupperware party, an 18th birthday or a funeral, I don't think I attended a single gathering of more than 3 people without the jatz and footy franks combo (along with wine coolers for the women, beer for the men, and Cottees cordial or - if we were incredibly lucky - a bottle of actual Coke - for the kids) until I was well into my twenties.

All I can say is thank god Australia matured, I matured and moved to Sydney, and I got to experience a broader range of food. So when I see a Boomer on Facebook yearning for the good old days of White Australia in practice if not in legislation, I think, do you want to go back to the food? But some people do, and that's why Coles knows there's still a market for their twiggy sticks and whatever that dip in the centre is. There's even hipster goat cheese types getting into this stuff for nostalgia. In fact I reckon if you opened a restaurant in Newtown or Fitzroy serving savoury mince, apricot chicken and cabanossi on jatzc crackers, it would do great business for five months until the novelty wore off and you blamed the lockout laws for being forced to close.

You may even be right. People only pretended this food was bearable. When you're a kid, terrible food tastes good. Witness all the children (most of them) who'd rather have Smarties than actual chocolate. They like mild room temperature cured meat, bland cheese and sugary sauces on rice. The adults, well, remember the wine coolers and beer I mentioned earlier? They were drunk. If you think Australians drink a lot now, think back to the 1980s, with 2 KB beers before dinner, wine coolers in foil sacks and no drink driving laws. Everyone was pretty much completely sloshed all the time. Australia spent generations being too drunk to notice they were eating shit food. They were drinking shit grog too, but after the first drink that is a minor matter.

* No pun intended

Thursday, January 03, 2019

Gone Postal

Those of us above a certain age may remember back in the heady days of the 1990s when, in between listening to The Offspring and dropping into the cabin to say hi to the pilots when boarding a commercial airline flight, all the talk was of "going postal". The term was derived after a number of United States postal workers, pushed to the point of fury with their employers and turning to guns as so often happens in that nation, resorted to opening fire on their coworkers and customers. It was a series of very real tragedies that became a verbal meme of sorts in the pre internet days; then as the actual internet took over the world, it seemed the death of the physical letter would lead to the end of postal services themselves. The days of going postal were over.

But with the revival of the postal service in the wake of online shopping can we have a minute to talk about the rage experienced by those of us poor helpless customers of the post office? I've written previously about Australia Post taking longer to get a package from Sydney International Airport to my house than an actual snail. But even once they've bounced your package between two depots in the same city for two weeks before routing it through Darwin, they fail to get the hang of delivery.

I lived on the third floor of a security apartment block when the buzzer indicated the package I'd been messaged to expect had arrived. I buzzed from my flat to let the guy in downstairs, but nothing happened. He buzzed again to let me know he was there. I stuck my head out on the balcony and saw him downstairs at the front door of the apartment block. I yelled out that he just needed to try the door, but he just kept buzzing and shaking his head, evidently intending I come down 3 flights of stairs to get my package, which I couldn't do at that moment. We stood there for several moments like Romeo and Juliet in reverse, with me calling out from a balcony and him refusing to try to get to me. (Although after I saw him depart, taking my long awaited parcels back to the post office, I did find myself wishing he'd die shortly). 

It's no use. When you've at long last worked out where your parcels have gotten to, you have to go to the post office, once you can find it, since most of the beautiful original post office buildings in Australia have been abandoned in favour of one ugly retail outlet every 3 suburbs. And you have to go - I tried to send a friend to pick up a heavy package for me, but despite him having the official Australia Post card to indicate there is a package waiting for me, with the official tracking number and barcode and all the rest, which I had signed to indicate he had my permission to pick it up for me, they wouldn't give it to him because although he could name my street, he couldn't remember my unit number.

And when I say retail outlet, I am not kidding. The modern Australia Post office looks like a TV Shopping Danoz Direct outlet filled with cranky customers and the most bizarre consumer crap no decent person could possibly want.



What even are Wonder Arms? I couldn't figure it out despite ample time to  consider the box whilst queuing; an exercise devise I suppose, although I did spot a product warning that said "Results may vary. Consult your doctor before beginning any new exercise routine. Any results from Wonder Arms are coincidental and for information purposes only. Product may cause palpitations, birth defects and arm weakness. Your boss knows you've been fiddling your expense account and you've passed the chlamydia you got from that secret Tinder hookup onto your wife. Product should not be taken internally...much like the Tinder hookup."

The same three people work at every Australia Post office, although there are only ever two of them on duty, unless it is very busy, in which case there is only one of them on duty. The all look tired, vaguely dusty and terribly disappointed. When you at last get to the front of the very long queue, they take your ID, stare at it at length as if it holds the answer to escaping the existence they find such an apparent torment, then disappear for an unreasonable length of time into the sorting room. Have they learned nothing about computerised organisation from Amazon? Otherwise what is going on back there whilst they spend 18 minutes in a suburban post office searching for your parcels? I'd suspect they're all having really wild sex, except no one who's having that much sex could look that wearily done with the world. You certainly wouldn't want your Redbubble delivery back if it was handed to you slightly sticky, but it too seems weary and dusty from its encounter with the post office by the time it is signed over to you.

But even then, you are lucky. I finally made it, sweaty before work on another 35ºC Sydney day, to the post office to pick up a package that mysteriously couldn't be delivered despite my working from home that day, to be met with this:


I'm on too much medication to be brought to the trembling fury this would once have inspired, but what the hell was an Australia Post authorised holiday? A picnic day of all things, apparently? Who goes on a picnic on New Year's Eve? No one, in Sydney, unless you like being crushed into a shadeless confine without benefit of alcohol for ten hours, then rained on, seeing ten minutes of fireworks, then waiting four hours for the train home. Precisely the sort of disappointing night that makes postal workers look so defeated. They no longer need to go postal themselves, though. They inflict more than enough pain and suffering on the rest of us. I hope they choke on their canapes, no doubt made using one of the plastic gimmicks they sell in store.