Most importantly, I should be writing my quota for the day: 1000 words.
And gluing some stuff back together.
And tidying the living room.
And sorting three loads of washing; washing two loads including cleaning up an epic blood nose from last night (by TJ).
And sorting out the ominously paper-filled sections of several “I should totally deal with this” piles: my work table, a basket full of ancient papers that may or may not be important but has been lurking for months; part of the kitchen bench.
Sew repairs on 5-10 items.
Buy time-teaching clock from Aldi (and tissues, and milk). – DONE
Drop Louisette at school – DONE
Pick her up; go to grandparents; fetch TJ and Chris; come home.
Take out the recycling.
And the kitty litter.
Sort out all the escape room stuff currently in my living room.
Edit “Feuding Fae” and coordinate postcard printing (and letter printing).
Sort “Murder in the Mail” stock.
Design and post ad for “Murder in the Mail” final subscription period (and “Magic in the Mail: Feuding Fae” first subscription period).
Organise a launch for “The Princess and the Pirate”?
Write business plan and sign contracts for “See Through” (yup, that’s a whole new book).
Organise a launch for “Feuding Fae”?
Write a blog post. With pics.
Appropriately drowning-like picture (actually swimming in a tidal pool last Christmas, which I LOVED).
TJ had his first truly epic blood nose about 3am last night and Chris and I both had to get up and run around with tissues and towels and so on. Then I got super anxious about… just… life. All of it. It took a long time to get back to sleep.
I’m still feeling panicky and overwhelmed today, so I thought making a list might help. Then I colour coded the list; blue for things I can delegate to Chris; purple for “won’t take long”, and red for seriously needs to be done today. Yellow for things I’ve already done and should celebrate.
I’m gonna do the gluing now. That will be one small thing done. Then I’ll probably go have a nap (from 3am-6am I slept on the couch; I could hear Chris snoring even from there). I nap 9 days out of 10 because of one of my meds (amytriptyline, for those who like knowing such things), and I’m also recovering from the flu at the moment.
If I have a shower on the way to bed, then that’s two jobs done.
Yes, showering is a job. Sometimes I feel fine after a shower; sometimes I’m exhausted. Either way I dread showering.
In other news, I have an operation scheduled for 12 June. It’s for adenomyosis (and presumed endometriosis). I’ve been having stronger and stronger endometriosis symptoms… which is good, because if it’s bad enough (which they only know by operating on it) then not only will my overall health improve a bunch, but I’ll get an insurance payout too.
So that will be awesome.
Hello and welcome to Karen J Carlisle!
Karen J Carlisle is a writer and illustrator of steampunk, Victorian mysteries and fantasy. She was short-listed in Australian Literature Review’s 2013 Murder/Mystery Short Story Competition. Her first novella, Doctor Jack & Other Tales, was published in 2015 and her short stories have featured in the 2016 Adelaide Fringe exhibition, ‘A Trail of Tales’, and the ‘Where’s Holmes’ and ‘Deadsteam’ anthologies.
Karen lives in Adelaide with her family and the ghost of her ancient Devon Rex cat.
She’s always loved dark chocolate and rarely refuses a cup of tea. www.karenjcarlisle.com
Karen is just about to release The Department of Curiosities. Here’s the blurb:
Miss Matilda Meriwether has a secret. Actually, she has several. One of them has shaped her adult life. Another now controls it. Her Majesty Queen Victoria has control of the Empire. She is the Empire, and creator of its secrets. Sir Avery works for The Department of Curiosities – the keepers of secrets – especially if they are useful to the Empire. When Tillie finds herself in the employment of The Department of Curiosities, she realises this is the perfect opportunity to uncover the truth she has been searching for. But the Queen has other plans for her.
The Department of Curiosities is a steampunk tale of adventure, a heroine, mad scientists, traitors and secrets. All for the good of the Empire.
And here’s a guest blog:
What doesn’t kill me…
“Was mich nicht umbringt macht mich stärker.”
“That which does not kill us, makes us stronger.”
-Friedrich Nietzsche (German philosopher),
Twilight of the Idols (1888)
Today I’m writing about writing processes, the evolution of The Department of Curiosities and a long, long journey through the dark.
In 2012 my life changed. For six months I floundered. I’d worked since I was fifteen. Now, suddenly and unexpectedly, I wasn’t. I was lost. How had this happened? Why had this happened? Why me? Why?
I was given professional advice: do something I like. “Find your bliss,” they said. “Do something for yourself.”
I’d always wanted to be a writer and artist, so I turned to a quirky fantasy story that had been mulling around in my head since the late 1980s. But my mood was too dark for the characters. I didn’t blame them. There were other stories wanting to be freed. I turned to a steampunk story I’d been toying with… An adventure. It had a name: The Department of Curiosities. I started writing.
For almost a year I wrote, as my professional world began to crumble, and finally crashed in 2014. I felt used, abused, betrayed, and abandoned. My mental health was stretched. After twenty-eight years of looking after everyone else – my family, my patients – I had to learn to look after myself (not as easy as it sounds). I felt selfish. I felt exhausted. I felt useless.
I stopped writing.
The characters of The Department of Curiosities slipped back into the shadows not wanting to entertain the Black Dog. I didn’t blame them either. Eventually, Viola Stewart stepped forward, willing to sacrifice herself (and her eye) to support and guide me through the next three years. Jack the Ripper, and various nefarious villains, helped me explore motives and psychology as I delved into the darker side of humanity: why do people do what they do? In the process I confronted my own daemons and my personal Black Dog, which constantly nipped at my heels.
Being trained as a scientist, I needed not only to put a name to my emotions, but to discover why I felt this way. Almost five years of professional help, and I hadn’t progressed beyond: Anxiety, ‘deep breathing’ and ‘finding my happy place’.
In 2018 I changed professionals, and was challenged to confront myself. I was diagnosed with PTSD. I started desensitisation therapy.
Finally I felt a slight ease. Things made sense. There was the odd moment of calm. A smile here and there. Aunt Enid popped by, providing a glimmer of hope in my writing worlds. She was beginning to open the doorway back to my original fantasy story… but I wasn’t (and am not) quite there yet.
Tillie stepped forward. She was ready to be heard. I glanced over my notes, pulled out my original manuscript (of almost 80,000 words). I started at the beginning –rewriting, scribbling down notes and plot changes as I went. The story was a little darker than I’d originally envisaged, but overall was a much lighter story than Viola’s murder mysteries, with adventure at its heart.
The Department of Curiosities is my longest story yet – at 104,000 (ish) words/420 pages. Most of the plot has remained intact, though I’ve rewritten almost everything – cutting back on ‘tell’, rewriting ‘inactive’ sentences and adding extra characters. I’ve learned so much about writing in the past five years! During the process, I discovered Tillie, like me, has been fighting to control her own life.
I’ve heard people describe writing as a form of therapy. But it’s not an easy path (at least not the one I took), and not one for the faint hearted. I confronted some dark themes, shied away from some, and embraced others. I discovered catharsis. I’ve excised a character’s eye in revenge, peeked into the darkness of the soul, confronted the feeling of helplessness, and struggled to free myself (and my characters) from the control (or at least the perceived control) of others. I’ve even visited the happier memories from my childhood.
It’s been a long journey, and looks to be a long, rocky trek ahead. Writing has played a major part, sometimes taking me on unexpected side paths, but all heading in one direction: forward.
I feel like I’m starting to free myself from years of expectations and self-denial and neglect. I’ve found a way to work through some of my darker thoughts. It’s helped me to accept (on good days) that I deserve ‘me time’, to look after myself and my mental health. As Writing has made me stronger. I’m starting to believe in myself again. I’m facing my fears and anxieties one at a time. Sometimes I win. Sometimes they do. Perhaps one day I will bring that Black Dog to heel?
The Department of Curiosities is my fifth book – and my longest (if you don’t count that fantasy book still squirming in the back of my head), not only in word count, but in gestation time. I wrote another five chapters and shuffled two chapters into the second book of the trilogy.
I started this journey in 2013. It’s taken five years to see it to completion. It’s taken a year to finally finish the final version of the manuscript.
The Department of Curiosities will be officially released on 22nd May (Tillie’s birthday). A perfect time for new beginnings…
You can find out more information on where to buy it at: www.karenjcarlisle.com/shop Check out the book trailers at https://karenjcarlisle.com/books/the-department-of-curiosities/book-trailers-the-department-of-curiosities/
If you want to follow the rest of The Department of Curiosities book launch blog tour, check out the links on my blog post: www.karenjcarlisle.com/DOC1bookblogtour You can sign up for my newsletter at: https://karenjcarlisle.com/sign-up-email-list/
Follow me on: · Twitter: https://twitter.com/kjcarlisle · Instagram: https://www.instagram.com/karenjcarlisle/ · Facebook: https://www.facebook.com/KarenJCarlisle/
Or support me on Patreon (for less than a cup of coffee a month and you get cool rewards!): https://www.patreon.com/KarenJCarlisle
NB: The Mary Sue pop culture site wrote a far better article on Christmas stress. Go read it here.
I live in fear of Christmas from about October onwards. (I also start buying presents for my kids at that stage, which I like doing—so there’s that.)
It’s particularly tricky for those who are at the “moved out of home but don’t have a family of their own” life stage (which can be incredibly lonely) or those who have recently lost a close family member to death or divorce.
And of course for those who suffer from depression, social anxiety, or other chronic illnesses. The pressure to be happy and joyful can be horrifying, and it climaxes on Christmas Day. It feels like the whole word is saying, “You must be happy and healthy at this time and place!”
There are four major sources of stress around the holiday season:
There are two ways to make finances better at Christmas. Either you spread things out over the whole year (buy one present a month, for example; buy travel tickets in February and then pay off a little each month) or you reduce the cost of Christmas.
Sometimes, the only option is to be honest: If you can’t afford travel, tell people that you can’t. If you really want to travel, it may be possible to receive travel costs as a gift—send an open group email to the whole family and say, “Instead of gifts, can everyone put in $20 so I can come to the beach without breaking the bank?”
Gift-wise, especially with kids, remember that YOU are setting the standard of what is normal. If the kids get a single gift from you each year, then that’s what they’ll accept as normal (with the occasional comment of, “All my friends get ten presents for Christmas” which you’ll have to resist along with every other “All my friends…” comment that the kids send your way the rest of the year).
EXPECTATIONS are crucial, and honesty, though awkward (and I guarantee some people will just think you’re cheap—screw ’em) can save a lot of pain.
I knew someone who would pick a fight every December and then not show up at Christmas. That’s… certainly a strategy. I would really rather this person just talked to us.
I know someone else who gave spectacularly expensive-looking but wildly thoughtless gifts. Every time they saw something on a massive sale they bought several. And that’s what everyone got for Christmas. They once got really weird about having gifts with half our family at one event and half somewhere else—because of course they’d bought the same thing for everything. Again, that’s a. . . strategy. That one could have worked great if there was any correlation between the gifts and the recipients. Like, if someone hates reading, don’t give them a book? Save it for someone else.
Family is complicated. Some people love getting the full set together in one room (I’m one of them). Other people would rather not see a single member of their family ever again.
If your family is truly abusive, you don’t owe them anything. Get out fully if that’s truly what’s best for you.
If your family is annoying, or just one or two are awful but the rest are great, see if you can work out a way to take the bad with the good (or, if you’re especially cunning, find a path where you get more good and less bad).
If your family is mostly good, be honest about your abilities to give/host/travel/etc. Traditions don’t have value if they’re hurting you. For me, it’s often easier to host than go somewhere else.
It’s really, really hard. Things will also go wrong. Travelling at Christmas is harder than at any other time because (a) So many people are doing it, and (b) You gotta pack gifts (both giving and receiving).
If you know you’re not physically, mentally, or emotionally up to it. . . you have a choice.
If you can handle travel, work out what you need to make it suck less. For me, an ample supply of chocolate, water, and snacks makes a huge difference. Air conditioning is crucial, and so is ‘down time’.
Take your painkiller of choice, and if you’re inclined to get travel sickness of any kind then take supplies for that too.
Don’t be an idiot and promise a 3-part Christmas blog.
Manage expectations, both those others put on you and the ones you put on yourself.
Learn to say “No” and/or “Not this year”.
Basically, expectations (including traditions) can be helpful (“I know I’m meant to bring a plate every year”) or harmful (“I know I’m meant to bring a whole roast turkey even though I’m driving interstate to get there in time aieeeee”). In the end, although manners are important, you are the boss of you. Take charge, and make Christmas fun for you—whether that means staying home and watching “Die Hard” with no pants on, or travelling in convoy with your 32 cousins to great-grandma’s retirement home and eating nothing but funyuns for two days.
Kids home from school
That’s a whole ‘nother story. I haven’t worked out a good strategy for being “on” for ten hours a day for 6 weeks, so feel free to share your strategies in the comments.
The moral of today’s blog: Kids, animals, travel emergencies, and health are unpredictable. Plan for that.
But most of all, plan for who you are and what you can realistically do.
The only good thing about banana bread is that is uses up bananas.*
1 and a half c buckwheat flour
1 c coconut sugar
1 tsp baking powder
1/2 tsp baking soda
2 tsp cinnamon
1 c mashed banana
1/2 c yogurt
1/4 c grapeseed oil
1/3 c maple syrup
2 tsp vanilla bean paste
1. Mix flour, sugar, baking powder, baking soda, and cinnamon.
2. Add banana, egg, yogurt, oil, maple syrup, and vanilla. Mix.
3. Pour into a lightly greased 21cm x 10cm loaf tin lined with baking paper.
4. Bake for 1 hour at 160 degrees or until cooked when tested with a skewer.
Obviously, the kids loved this. Even Louisette.
Yum Factor: 0
Will make again? Nope. Bananas are evil.
*Apologies to the 6 year-old child who lovingly contributed this recipe to her Year 1 class.
Aaaand we’re done!
While in the waiting room today I looked over my last three months of blood sugar readings. It turns out I spoke too soon when I blamed that delicious baklava for my record-breaking blood sugar reading the following morning.
As is utterly obvious to anyone who glances at me in passing, I eat a lot of chocolate. Like, every day. (I’m gonna go analyse that habit sometime soon.)
Despite this, my blood sugar has been remarkably good ever since my stomach operation last year. (Pause for cheering!)
Except these school holidays.
Was it all these not-usually-healthy recipes?
I looked back over the past three months of daily blood sugar readings, and guess what?
There were a total of 10 high blood sugar readings.
1 was due to getting up at stupid o’clock to drive to Sydney.
1 was just random.
2 were due to medical appointments. (Often deeply stressful.)
The other 6—that is, 60%—were ALL on the one day a week that I look after the kids for the full day (that is, from 8am until 6pm, while Chris is at work and there’s no day care or grandparents).
So that’s informative. Unfortunately for everyone, I associate the kids with an increase in physical pain and panic, which of course is a self-fulfilling thing.
So school’s about to start again, which is going to help with my sanity a bunch, but I clearly need to think about this some more. For one thing, I’ll make sure Chris takes more time off work next holidays.
1 and 3/4c milk
1 tsp vanilla essence
2 c self-raising flour
1/3 c caster sugar
- In a bowl, sift self raising flour and mix in the caster sugar.
- In a separate bowl, mix eggs, milk, and vanilla essence.
- Add egg mixture to dry ingredients and mix until there are no lumps (a blender, hand mixer, or shaking bottle is helpful).
- Heat and grease frypan.
- Spoon mixture into frypan and cook until bubbles form and pop.
- Flip and cook other side.
- Enjoy with your favourite toppings.
The kids were thrilled, naturally.
Surprisingly, this recipe had a lot of similar elements to the other one (I guess not that surprisingly, since they’re both pancake recipes).
Tomorrow is technically the last day of school holidays, and the kids will both be at the grandparents all day. So we made it? I guess? We HAVE done all the recipes, and I’ll blog about the last two shortly.
Today I spent two hours with an endometriosis nurse. This is one of the steps along the road towards likely surgery (given how much the last surgery helped, and how much hormone treatments have destroyed my brain, this is good news—and since it’s through the public system, I won’t need to run another GoFundMe campaign).
As I drove to the appointment at the Canberra Hospital, I listened to the radio.
So it turns out that, last night, a man under police guard wrestled a GUN off a POLICE OFFICER and fired at least two shots. In Canberra Hospital. (He’s now being charged with two counts of attempted murder, so. . . yay?)
Well, I didn’t get shot and I didn’t quite start full-on bawling while discussing my mental and physical health, or being earnestly told that diet and exercise is strongly recommended (WHAT!?!?! I’m an enormously fat female with depression so that idea has never once occurred to me or any of the dozens of medical professionals I meet every week or so).
So. . . yay.
Tomorrow I have a “diabetes checkup” which is medical speak for having another, unrelated nurse tell me to diet and exercise. She’ll continue suggesting exercises I can’t do and foods I can’t eat until I start sobbing, then she’ll tell me off for giving her attitude, and then I’ll say, “Thank you very much. I’m going now” and walk out while she’s still talking.
Or at least, that’s what the last one was like.
One of my meds is amytriptyline. I take it to prevent migraines.
I’ve always had migraines with my period (not that I knew they were migraines until relatively recently) and when I was pregnant for the second time I had pregnancy migraines. It took a long time to get them diagnosed because they were mostly expressed through an aura that was pretty much 24/7. So basically my vision was blurry, and I had a lot of headaches. Along with a lot of other pregnancy awfulness.
Pictured: The up side of that pregnancy.
The migraines continued after pregnancy, still every day, still mostly aura (but plenty of pain, too—and if I was in pain it usually went for three days straight) until I finally saw a neurologist. They mentioned that, among other things, I had some non-permanent brain damage (as I suspected, at that point – I’d had migraines every day for over two and a half years and definitely felt like something was wrong with my brain that wasn’t “just” mental illness or absent-mindedness or baby brain). The first med we tried didn’t work, and amytriptyline was only an option if I was NOT taking zoloft so I went through a really nasty period of getting off zoloft (for anxiety/depression) so I could try amytriptyline.
Fortunately, it worked—and at a relatively low dose, too. Amytriptyline is also sometimes prescribed for anxiety, but sadly it didn’t help me (so I now take pristiq for the mental stuff).
The early days on amytriptyline were super trippy. For the first week I’d get up in the morning too doped-up to walk straight. It got less silly after a bit, and I started taking the pills with dinner instead of when I went to bed.
Nowadays I still get aura relatively often—generally towards the end of a long day—and the occasional migraine (the aura is a warning; I take painkillers and chocolate and try to avoid physical and mental stress in order to head off the pain before it settles in).
Solving my migraines was a really big step toward functionality, but amytriptyline has some pretty intense side effects.
Firstly, I need to be careful of other meds containing serotonin (so I don’t take too much, get serotonin syndrome, and maybe die).
Secondly, it dries out my eyes. I now use eye drops every single day, but my eyes still water a whole bunch. I can’t wear eye makeup, and more importantly my eyes are in danger of going kablooey due to diabetes.
Thirdly, I sleep. A lot. I typically go to sleep around 11pm and get up at 7am (for those of you who don’t like counting, that’s eight hours each night) and also nap for around ten hours every week. Some nights I go to bed as early as 7pm, and sleep a full ten or twelve hours in a row. Then quite often have a nap the next afternoon. I used to be a night owl, but now I’m usually pretty wrecked in the evenings.
Since I started taking amytriptyline, three things happened:
My writing output dropped, and has never recovered. I still write more than most humans, though.
I can eat chocolate after dinner. This I like.
TJ sleeps less than I do, which SUCKS because I get almost no Chris-and-me-watching-TV down time.
It’s always super easy to get to sleep. Except every so often, generally when (like tonight) I take the tablet much later than usual, when I feel wildly awake. When that happens, I get up and watch TV or read a book until I feel tired enough to try again.
And that’s why I wrote this blog entry. At 2am.
One of the to-do lists I wrote recently was a medical one. There’s a lot of stuff on that list. I’m currently on a waiting list to see the neurologist again (I think the waiting list is about a year) and talk about other pill options. I don’t mind waiting because I know things might get worse before they get better. My mental state is fragile at best.
It’s clear I still have issues with migraines. It’s also clear that my brain damage hasn’t healed in the two years since I started taking amytriptyline (suggesting that the low-level migraines I’m still getting may be preventing my healing).
There is a very simple test for brain damage: I try to walk using ‘fairy steps’ – with each step, I touch the heel of the new foot to the toe of the previous foot. I’m now able to do it, but only if I use my arms to help me balance. If I keep my hands clasped together, I fall over. The physical lack of balance is nice and measurable, but I don’t know the effect this brain damage has on my writing or my ability to socialise. I’ve always been bad with names, but I’m really REALLY bad now. I also switch nouns (eg “Put the carrots in the laundry[fridge] please.”) and presumably my conversation isn’t as sparkling as it could be.
I used to be quite fond of my brain. Mental illness really doesn’t help with that, but brain damage is a whole new kettle of brains. Fish. Fish brains.
You know what I mean.
It’s been about ten weeks since my stomach operation, and although I’m not fully healed I was just given the go-ahead to swim (my favourite and most effective exercise) yesterday so I’m pretty much in the clear.
It really really hurt a lot. There were times when I wasn’t sure it was worth it. (But it clearly was.)
Post-operative infections suck. Especially when you’ve allowed a month off and then suddenly it isn’t close to enough (it was more like taking two months out of my life, although I did get some work done in that time).
Yes, I have a new belly button.
I can fit clothes! This is still extremely exciting.*
My blood glucose has been within target ranges EVERY SINGLE TIME ever since the operation. Under the advice of my doctor, I’m slowly cutting out the diabetes medications that I take—continuing to monitor my blood sugar all the time. It’s too early to be certain, but it looks suspiciously like my stomach operation instantly fixed my diabetes. THAT IS AWESOME. It is also another reason this operation should absolutely be covered under Medicare. How many other mothers have severe health problems because their internal organs just haven’t “bounced back” after a massive physical event?
I’m not so hungry. I snack much less often, and don’t feel as weak, shaky and fatigued as I did before the operation. Stomachs are designed to be enclosed by abdominal muscles, and that goes a LONG way towards explaining why I’ve doubled in weight since having kids… my stomach just wasn’t working, and both my hunger and my fatigue were telling me I wasn’t getting enough food.
I’ve lost a bunch of weight since the operation without trying (or being hangry, which is a big problem for me as it connects to my existing mental conditions in dramatic ways). Hopefully this is a trend that will continue! Honestly I know that things will get harder and harder as I have less weight to lose, but this is certainly helping a LOT.
And sure, I’m still massively overweight, and I still have at least two other conditions that make standing/walking a big problem. But my health has improved hugely, and my optimism for the future—maybe even, one day, a healthy future—is greatly improved.
*I actually bought a full-on ball gown the other day, on a whim, because (a) It fit, which is an amazing thing. (b) It’s very pretty, (c) It was at Vinnies, so it cost $50 instead of $500. (d) It was near my birthday.
Full disclosure: I can’t actually do up the zip at the back. Yet.
But I promise to post a pic someday. I’m thinking I might wear it as part of the Kickstarter video for “Murder in the Mail”, which I need to film and put together this week.
For those who don’t follow me on facebook or twitter, I’m in hospital (again). Just as it looked like I was in the clear post-operatively speaking, I developed an infection.
It so happens that the infection is right in a patch of my belly that’s currently completely numb. Which possibly explains why I’ve been in almost no pain this entire time (I noticed it on Christmas Eve, but thought it was just a rash).
Yesterday I had a small operation to help fix the infection and (warning: the rest of this paragraph is medical and icky, but fascinating) the wound was left open and gaping for a while, as I waited to have a special medical vacuum attached to it. I used my kindle camera to have a look and got a huge shock at what I had thought might be a belly button-sized wound. It’s long, and wide, and deep. It’s also extremely clean as far as the human body goes, and I could clearly see different levels of. . . well. . . me. I was somewhat disturbed and quickly replaced the sheet covering it, but then realised it was a fab writing opportunity and took a picture. Several people have since requested to see it, so I’ve emailed them privately. (If you want to see it, email “email@example.com” with the subject line “Gaping belly wound please”.)
It’s also inspired a significant dramatic scene in one of the stories I’m currently working on. I can’t tell you more than that, except that I ran the entire scene past a nurse and she made lots of the right kind of impressed noises. (Also, I was not on morphine at the time.)
I very much enjoyed my morphine experience once again. Some people throw up and/or feel awful after a general anaesthetic. I feel FANTASTIC. It was rather hard not to over-compliment all the wonderful staff, and I struggled with conversation due to not being able to hold info in my brain for more than about five seconds at a time.
The following morning I had a follow-up visit with the surgeon who asked me if I remembered speaking to him and his team after the surgery.
No, I did not. I definitely remember being on morphine and talking to people, but there is a whole period of time before that fully-conscious part of the evening that I don’t remember at all. He said I was, “Two vodkas over” and “laughing at nurses”. I suspect I may have made some overly affectionate comments towards all the staff (male and female nurses are both awesome) and he chose to spare me the knowledge of exactly what terrible things I said.
Silly man. Of course I want to know exactly what terrible things I said! I’ve never been blackout drunk so THIS IS MY MOMENT TO SHINE.
I saw a different doctor this morning and asked him if he was there at the time. “No,” he said. “Sadly. It seems I missed out.”
Fingers crossed I get some embarrassing and inappropriate quotes of my drugged-up self before I have to go home.
As you can tell, I’m in high spirits and feeling remarkably well (seriously, I’m not even taking panadol today because I just don’t need any pain relief). I’m going to stay attached to the medical vacuum for quite a while, and I’m still waiting on a swab result to get me a more targeted antibiotic—but I have my own room with a gorgeous view of Telstra Tower, The National Arboretum, and the helipad, and I actually had to force myself to not dance when a song I liked came on the Tv this morning.
You can see why this floor is called ‘The Penthouse’.
Also, I have a silver dressing on/in my stomach wound, which is extremely cool given that my steampunk universe has magical silver that can assist with supernatural levels of healing. (Based, of course, on silver’s real-world antibacterial qualities, which is why it’s in me right now.)
My actual surgery was at John James Private Hospital, but my official surgeon is away on holiday so this entire infection is being dealt with in Canberra Hospital, which is public. So I’ve been able to compare notes with… er… myself.
What the private hospital did better:
- It’s made up of almost all private rooms, and you can pay a (relatively) small amount ($70/night when it costs over $1000/night already) to make sure you’re alone.
Not to put too fine a point on it, but sharing a room with a random stranger (who is guaranteed to not be at their best) is always going to suck. The best-case scenario is that the 2 (or more) of you get on like a house on fire, and relieve one another’s boredom. But even that would freak me out thanks to the magic of social anxiety.
When I was at the private hospital I also had a private ensuite, which of course significantly reduces the grossness factor. (I also struggle with anxiety when showering anywhere other than my own ensuite at home, but sharing with sick/bleeding/incontinent people—or sharing while sick/bleeding/incontinent is even less fun.)
My roomie here at Canberra Hospital was an older man who was clearly very ill and in a lot of pain. He spent a lot of time moaning aloud, and would swear (and then apologise—he’s clearly also a very nice man doing his best at a miserable time) at almost every procedure (including really basic stuff like blood tests and cannula flushes) or movement. He was also in the bed by the window, which meant I didn’t get to see the view (not anyone’s fault of course, but natural light is a very helpful thing). He isn’t fully aware of where he is, or who staff or family members are, and talked to himself a bit. All this was stressful for me but part of the joy of hospital life. Then one day he was talking to himself about wanting to be violent and trying not to be, and I decided that he was a (tiny tiny tiny) potential danger to himself and others.
I told the staff that I thought he should have his own room, and why. They said that wasn’t an option, which shocked me utterly.
This man has been in hospital for weeks and hasn’t done anything the least bit violent. He’s also got a catheter and is basically unable to leave his bed. So you can see why staff immediately assumed I was over-reacting.
I went to the lounge and tried to sort out whether I was being rational or not. The thing is, as a fiction writer everything in life goes through a story filter in my head. This man said he felt like he was being tortured. He wasn’t sure what country he was in. He didn’t recognise his own family, or the nurses. And he was understandably angry.
I’m mentally ill too, and keenly aware that “mental illness” is blamed for a bunch of crimes (while the mentally ill are far more likely to be the victims of crime than the perpetrators).
Watch any movie with foreshadowing, and you can see the big disaster coming from miles away. You never get a story where a crazy old man talks about violence and then successfully controls himself. You get a story which ends with Hospitalised Mother Of Two Killed By Delusional Room-Mate After Requesting A Different Room.
Long story short, I applied the same strategy I apply to every important hospital issue: I waited until the next shift came on, and told them exactly the same thing.
They knew the man would hate to be moved, so they moved me instead. And voila! I have a private room (the only one on this floor), despite assuring everyone over and over that I’m absolutely fine and don’t deserve special treatment.
It’s sooooooo gooooooood. TJ in particular was born loud, and it was very hard to host him while trying not to bother the patient on the other side of the curtain. The gentleman above also had lots of visitors and I constantly found myself inadvertently (or vertantly, who am I kidding?) eavesdropping on everything they said.
It’s good to be alone.
2. Food. Obviously. Everything I ate at John James was nice. Not all of it was 100% to my taste, but it was all decent. Some of it was seriously good.
Yesterday for breakfast I was intolerant to literally everything on the plate except a slice of cold toast and some low-fat margarine. So that was my breakfast. No milk, no protein, nothing that was enjoyable to eat.
The vegetables here are microwaved frozen vegies; the meat is usually a little nasty; the porridge would be better used as Kindy glue and the backup sandwiches (kept in a fridge for people like me that have been fasting and needed something to eat between normal mealtimes) recalled that famous New Yorker story “Cat Person”, in the following manner:
“It was a terrible sandwich, shockingly bad; Felicity had trouble believing that a grown human could possibly be so bad at making sandwiches.”
One sandwich was cheese: plastic cheese with a thick layer of cloying margarine. The other was “Mayo chicken”. The mayo was bad, the chicken was bad, and the bread was going stale, but it was the combination of finely-minced chicken and still-very-noticeable chunks of cartilage and bone that truly surprised me. I’ve never encountered chicken bones in a sandwich, let alone one that had apparently gone to the trouble of mincing up the meat. Was it made of chicken scrapings from a sausage factory floor?
I cannot confirm or deny that statement.
This was my lunch today:
Take a moment to guess what it is. Milky tea, and some kind of meat with an ice-cream scoop of gently flecked mashed potato?
The mug is mushroom soup. It tasted very mushroomy, with just the slightest hint of actual real mushroom—perhaps as much as 2% of a physical mushroom, finely grated and scattered into the mushroom-flavoured broth. It was actually pretty nice, and it was a good thing it was low on actual vegetables since I’m pretty darn intolerant of the shrooms at the best of times.
The other is a veal roast with gravy and “cheesy potato”. The lunch and dinner menu always feature microwaved frozen vegetables, and various forms of (alleged) potato.
Potato is actually the one vegetable I can eat safely, and despite the carbs it’s got a lot going for it. It’s all powdered potato, but the “cheesy” version was definitely superior to the ones that are pure powder or microwaved slices of boiled spud.
I feel a little sad as I wonder how many baby cows were slaughtered in order to be burned and smothered by (alleged) gravy throughout hospitals all over Canberra today. I had some of the non-burned bits and they were okay, although the weirdly viscous movement of the gravy was a little disturbing (I’ve made powdered gravy and it doesn’t do that, so what could create such an effect? Did it get mixed up with the “rolled oats” glue from breakfast?)
Oh! The other food difference is that it was quite easy to convince people here that I’m better off with the non-diabetic menu (which tends to have more protein and less stuff I’m intolerant to). At John James I’d take advantage of any confusion and squirrel away real butter whenever someone accidentally gave me the good (ie non-diabetic) menu.
I also had a slice of nice white bread and real butter at lunch, which isn’t super healthy but certainly is delicious.
But here’s something interesting: I’ve been treated much more respectfully here than at John James. On one occasion at John James two nurses came in to personally administer my medication while I was on the loo (rather than coming back in a few minutes). Given how overworked nurses are, I’m mildly sympathetic—but after having two kids I feel like far too may people have treated my body like public property and I’m pissed. If I can dress and shower myself, I want to do so without company thankyouverymuch.
A nurse at John James disapproved of my method of bringing in my (very confusing) array of medications, and she confiscated them all and ordered replacements from the pharmacy. The replacements looked different and I was unable to keep track of important meds like diabetes stuff, migraine stuff, and anti-depressant pills. As has happened every single time I’ve been in hospital, nurses tried valiantly to keep perfect written records and give me all my meds at the right times—and they failed utterly. Although the paperwork system is a great plan, it doesn’t work in practice and that is dangerous. (Obviously, letting me take my own pills while high on morphine isn’t going to be safe either.)
Here at Canberra Hospital, nurses have over and over again LISTENED to me and let me take my own pills at the appropriate times. This is bizarre and wonderful. (And didn’t happen here at Canberra Hospital when I was pregnant and came in with premature labour… but of course, pregnant women be crazy so people are always extra patronising during such times.)
I have a theory that patients at a private hospital are fussier and more demanding, so private nurses are more likely to have grown hard and dismissive of patient concerns. Because, although the vast majority of staff at John James were great, my overall experience with staff here at Canberra Hospital has been better, kinder—and MUCH more respectful.
Having said that, I’d kill for a private room.
I mean, not really KILL…
Or would I?
There’s often a wonderful eerie quality to hospitals, as I meet yet another shift of new people tasked with keeping me alive, as my medical vacuum says “eep” to indicate it’s just been unplugged, as I smile politely while someone takes four attempts to hit one of my veins with a syringe, or as I push my drip stand down the empty hall at 2am, shuffling in and out of pools of fluorescent light.
Once again, my biggest worry is recovery. Small children, school holidays, and major surgery do not mix well.
Kids get bored.
Mums run out of ideas.
Mums do what they have to do to get through the day without excessive screaming from/towards the children.
Mums go back into hospital, and the cycle starts again.
I don’t really have a solution. Chris may be healthy, but he has his limits too—and he’s back at work this Tuesday. I have received overwhelming amounts of support from friends both close and barely seen, and that frightens me as well. I’m painfully aware that my normal “good” level of health isn’t enough to do the stuff people have done for me (such as babysitting my kids for a whole day, or donating money). It’s never easy to believe I have value, as a woman/fat person/depressed person/writer/disabled/low-income person. Hopefully spelling it out here will help me to remember it’s society that is broken and wrong, not me. My personal worth can’t be linked to societal norms or I’m screwed.
The good news is that I may still be able to enrol Louisette in holiday care during January. Because boy howdy do we need it.
I woke to pain; the kind of pain I imagine I would feel if my abdomen was sliced open and pinned wide, like a butterfly.
Of course the anaesthetist had done her job well and I was all sewn up and already settled into the ICU (most people go to a regular ward after an abdominoplasty but I have diabetes etc so they were being careful). I knew I was in hospital and that nothing was wrong and that there would be painkillers very soon. So I wasn’t afraid; just in pain.
So I thrashed my head back and forth, careful not to actually move my torso, and said, “Ow ow ow ow ow ow ow ow ow” until people came over. I think they asked me to rate my pain out of ten (something that always reminds me of Scrubs pointing out how utterly biased and useless such a scale is). Since I wasn’t actually screaming (a la being in labor) I said 7 or 8. They gave me morphine, which was most definitely the right call. I had a button I could push for more as needed (which had a light that turned off if I wasn’t allowed more yet). I later discovered that only about 1 in 300 abdominoplasty patients require post-op morphine. That astonishes me.
Kids, it hurt. It hurt a lot. It still does. (To be fair, my back pain due to the limited movement is also very bad, and the operation also triggered migraines.)
After that, the hospital visit was about the same things as all hospital visits:
- Negotiating bureaucracy. Every shift and every ward has slightly different rules, and the vast majority are set in iron. Most of the rules are harmless, but it pretty much always means my medications—some of which should NOT be messed with—get screwed up. That certainly happened this time, and over the five nights it didn’t ever get correctly sorted out.
- The gradual transition from sleep to boredom, punctuated by tests. I was bored enough to summon pastoral care just so I had someone to talk to. (I’ve heard hospital staff average a total of 12 minutes per day per patient, and that sounds about right.)
- Toilet functions.
#3 should definitely be #1. I couldn’t tell you how many people asked if I’d farted, nor express how pleased they were when I answered in the affirmative. For the first couple of days I couldn’t sit or stand without help (or, obviously, walk) so some of the nurses got to know me… extremely well. Nurses are always ridiculously blase about such things. On my last day I was going to the bathroom and two nurses went ahead and walked in on me to give me some pills rather than waiting five minutes and coming back.
So there was a lot of grossness. If you’re a woman who’s had a baby, you’ll be familiar with the sense that your body no longer belongs to you. That doesn’t mean it doesn’t suck, or that it stops feeling like a violation. Abdominoplasty scars go basically from hip to hip (like a great big smile), but are deliberately laid down as low as possible. Which means literally among the short and curlies. (As it were.) I literally cried when I had my dressing changed yesterday. You know what it’s like removing an unusually strong bandaid? It’s like that, except you’re not allowed to wet it, and it’s far too big (and too raw a wound) to rip off fast and get it over with.
The grossest thing that people have to deal with post-op is the drains. The body tries to fill up a wound with liquid, which actually tends to swell and infect it. Drains draw bodily fluids away during that first crucial few days (8 for me). Basically I had two very long flexible straws sewn into the wound. At first it mostly looked like blood coming out through the straws, but it was always a mixture of blood and other stuff that gradually shifted in ratio to the point where the blood could clot, and the fluid in the bags was an orangey colour instead of scarlet.
So this is what the drains actually looked like:
They were uncomfortable as well as gross, poking into me when I sat or walked, and getting quite heavy at times. I’m very glad to not have to deal with them any more.
I’m still on some pretty intense painkillers (again, I’m assured that most people have downgraded to just panadol from here—which is certainly not a go for me at this stage). I’m still in a lot of pain, although I do have periods of time (when I’m sitting still) that I can forget about it.
My body is quite different. Obviously, my enormous stomach is now a normal size (it’s certainly not the world’s greatest stomach, because abdominoplasties don’t work that way), which is extremely exciting. I’m retaining water (normal after surgery because the body is stressed out) and still can’t stand up completely straight, but I can wear all my dresses (skirts tend to be too big now and pants would hurt way way too much).
My appetite is dramatically changed now that my stomach isn’t flopping about willy-nilly (rather, held in place with the muscles that are supposed to hold it)—not only do I eat much less, I stay full longer too. I’ve been getting blood-sugar readings in the healthy range for the first time since I was diagnosed as diabetic.
It’s early days yet, but the worst is over—for this operation, and I hope for my health in general.
Here’s the official pre- and post-op photos:
The surgeon removed 3.5 kilos just from my stomach. He also made me a new bellybutton (which right now is just a horrifying pit of blood and bruising).
This surgery is definitely not for everyone. It’s not an easy thing to go through, it costs a huge amount, and you need to be realistic about results. But I’m certainly very glad to have my innards put back where they belong, and I expect to reap the benefits of that for the rest of my life.
I’m going to go ahead and talk about some gross medical stuff here, so feel free to skip this one if you’re at all squeamish.
It’s 5am on Friday, so it’s just (barely) over a week since I had my abdominoplasty operation. I’ve carefully referred to it as an abdominoplasty rather than its much simpler and catchier name: Tummy tuck.
I guarantee a bunch of people are saying, “WHAT!?! This whole thing you’ve been banging on about is elective plastic surgery?”
(This monitor lizard is both shocked and appalled.)
To which I generally point out all the hard medical reasons for me to “need” (rather than just want) this surgery: the 9cm gap between my stomach muscles; the back problems; the umbilical hernia; the sores due to loose skin.
But when I’m able to push past my own self-righteousness, why the hell shouldn’t women be allowed to have their stomachs put back into a vaguely familiar shape? The phrase “mummy makeover” makes me quiver, but seriously why not? Why is it right and good that women should go through the misery of pregnancy for 9 months, the agony of birth, and then also cheerfully accept that they’ll never fit into jeans again, no matter what they do? Why should women’s bodies go through horrific trauma and then also shame their owner for the rest of their lives? I often feel about ninety years old courtesy of my various post-partum health issues, but even the average woman probably ages around 10 years thanks to having kids… and that’s before actually looking after the kids.
I had a tummy tuck last week. Although my stomach muscles were severely separated (in a manner that, as a sports injury, would be covered under medicare-why yes that IS sexist) it proved impossible to have my body stitched back together via the public health system. Believe me; I tried over and over again for years. My youngest is three and a half years old, and I knew within weeks of his birth that something was seriously messed up with my stomach. It’s been a long and shitty journey, and the journey itself has certainly been a factor in my gaining more and more weight (which then of course causes doctors to tell me that all my problems are my own fault. Cause and effect are a thing, y’all), and going through a lot more pain and humiliation than necessary.
One surgeon told me that my stomach gap was probably too small to bother with, but ordered a scan. When I returned to him with evidence of a 9cm gap between my stomach muscles, he told me it was far too big for his hospital to deal with, and I’d need to go to Canberra Hospital (which happened to be where we were meeting, since he works at two hospitals). On both occasions he told me, “It’s out of my hands.”
One surgeon told me that stomach muscles could not actually be fixed (the entire tummy tuck industry is a scam, apparently) but he could add some surgical mesh to fix my umbilical hernia (the hernia means that umbilical stuff tends to poke out of my stomach at times due to the lack of stomach muscles being where they should be). After googling matters, confirming my suspicion that stomach mesh would make any future actually-solving-the-primary-problem operation more difficult and dangerous, I refused the surgery. Shortly afterwards, Australia’s largest manufacturer of surgical mesh was taken to court for their unsafe product. So that was a win. Sort of.
I looked online for a surgeon who worked in both the public and private sector. My plan was to get a straight answer about the surgery by appearing to be a private customer—then, when he confirmed surgery was necessary, tell him that I needed to go the public route. The surgeon I found (and ultimately used; Dr Tony Tonks) no longer does tummy tuck operations through the public system because it’s statistically impossible to get them approved.
Friends suggested a crowdfunding campaign, which I did. It raised around $10,000 (some people chose to give to me directly), and my parents ultimately paid the rest (THANK YOU Mum and Dad). The surgery itself cost a bit over $8000. The anaesthetist cost $1700. The hospital cost a bit under $7000 (for using the theatre room, and for staying two nights in the ICU) which then increased to $10,000 (because I stayed an extra three nights due to a low lung capacity). So if you’re looking to get this surgery, you’ll need about $17,000 if absolutely nothing goes wrong along the way (plus 2-4 weeks off work during which you’ll be barely able to go to the toilet unassisted, and won’t be able to concentrate or stay awake for long).
A huge number of people donated amounts ranging from $5 to $4000. I’m quite anxious about letting people down (goodness knows I have other health issues as well, so I won’t be representing Australia in the Olympics anytime soon), but I’m also extremely touched by all the support. It’s incredibly hard to get past the “I’m so grateful for my kids that I mustn’t complain about anything” notion combined with the self-deprecating “Anything that improves my appearance and costs more than $100 is sheer wasteful vanity, especially if the ugliness is due to mum stuff”. Even though I can tell, logically, that they’re stupid. Having people not just say, “You should do this thing” but put their money into it has really helped me to grudgingly allow myself to value my own health.
In related news, why do so many women feel that a drug-free vaginal birth is the only “good” birth? Because it hurts more, and is therefore morally superior (aka “better for the baby”)? Medicine hasn’t stopped being sexist just because “hysteria” isn’t an official diagnosis any more.
Nowadays, we say, “Hormones”. Or “It’s natural”. Or even “post-partum depression”. Or “a side-effect of weight gain” (I’ve gained enough weight and suffered enough pain to know that when medical people say, “Even five kilos will make a difference” they are often dead wrong. Everything that’s wrong with me right now was also wrong with me when I was twenty-five kilos lighter… which is the reason I’m twenty-five kilos heavier now). All of which are used every day to deny real medical support to women. And once you have more than one medical condition… well! Good luck to you. Especially if one condition is mental illness. Because a problem that’s hard to fix is easy to simplify: You’re a hypochondriac, or looking for attention, or maybe you’re just fat and looking for something to blame other than your own lazy arse. (How do I know you’re lazy? Easy! You’re fat. Fat isn’t a side effect of chronic pain, or a battalion of complicated medical challenges. It’s a side effect of laziness every time. And I can prove it, because you’re looking for a medical solution instead of dieting. What a pig!)
I guess that’s a fairly good summary of the psychological side of this operation. I’ll save the physical stuff for another entry.
I stayed an extra three days in hospital to do lung-strengthening stuff because apparently I was under-oxidised (very likely a contributing factor to me feeling exhausted and running largely on sugar for several years).
But I’m home now, and pretty pleased about that.
The operation went smoothly, and the incision site seems to be healing well.
I’m going back to bed now.
So I’ll be having my operation this Thursday, and I’m told I’ll be so tired/sore that I won’t even be up to sitting in an armchair and writing on my laptop (or, as I call it, “Being Awake”) for three weeks.
Chris is somewhat absent-minded, but I’ve asked him to post on my personal facebook page just to say, “Yeah, op’s done. Felicity’s resting” or some such, but I’m not sure he’ll remember.
So don’t worry I guess? If you don’t hear from me for a few weeks?
One side effect of my anxiety disorder is worrying about people worrying about me. So just don’t, mmkay? Promise?
Right now I’m writing a chapter about giant squid, so that’s good.
My feelings swing wildly hither and thither regarding the operation. There are three main axes (okay, four):
- I will be able to fit human-shaped clothes again… after nearly seven fucking years of maternity clothes! I might even be able to wear jeans again. But I’m super extremely giddily excited about wearing all my dresses (the ones that fit my overweight self)! It took me way too long to realise that every dress ever will exaggerate a big belly. And maybe I’ll fit into seatbelts properly again! And NOT get congratulated on my pregnancy (which I don’t have) every time I go to a party or run into an old friend. That will certainly help with social anxiety.
- Maybe, someday soon, I won’t actually be disabled any more. Maybe I’ll be able to do crazy stuff like walk to the shops or go to a playground that’s more than fifty metres from the car park. Maybe I’ll be able to just get rid of my wheelchair forever, and trust myself to travel solo again, and be… you know, capable and independent and stuff, without fighting so hard for the basics? And not so afraid of everything, because everything won’t hurt so much? Maybe? Surely, at the very least, my back and neck (and maybe migraines) will be a lot less of an issue due to not having an extra chunk of stomach pulling my whole body out of alignment. [Shout-out to all my chronically ill and/or disabled peeps out there… I don’t have anything good to say except I see you and I hope I do right by you in my life and in my stories.]
- What if all this is wrong and I just fail at everything and get fatter than ever and all those people who supported me financially and emotionally about this operation were just wrong and my body is just as useless and awful next year as it is right now? What if I go through all this only to end up just as unhealthy but twice as hopeless?
- I’m not good with pain, the kids aren’t good at boundaries, and Chris isn’t good at remembering minutiae (like taking Louisette’s leftover lunch out of her bag rather than leaving it to be discovered in February). This recovery period is going to be all kinds of torture. And then when I get to the “kinda okay” part of my recovery Chris will be gone and it’ll still be school holidays and it’s going to be even worse with kids present 24-7.
So I guess I’m a bit stressed out. Mostly about my own imperfect self re:immediate family members, and also trying to do everything that needs doing this year in the next three days. (Christmas is sorted, plus a bunch of other stuff including most of my writing gigs. I just need to write 7000 more words of a giant squid attack and then I can relax. Theoretically.)
I had Chris take some pre-op pics of me for comparison purposes:
“I just need to write 7000 more words of a giant squid attack and then I can relax.”
Story of my life.
It’s November. I’m not counting the days until Christmas, but I am counting the days until I get to experience something far less common and more painful: An operation. Yay!
(This is a long entry, with a sprinkling of swear words. Feel free to skip to the bottom where there’s a link to donate money.)
On 30 November (moved from 7 November) I’ll be getting the 9-cm gap in my stomach muscles stitched back together. It’s 100% normal for stomach muscles to separate during pregnancy, and to gradually close over the six months post-pregnancy (one of several excellent reasons to never ever ask a lady if she’s pregnant, especially if she has young children). Most women wind up with a permanent stomach gap of a centimetre or so. If the gap doesn’t close on its own, no amount of exercise or weight loss will fix it.
Similar injuries caused by sport or accidents are covered under the public health system in Australia. Pregnancy injury is not. The excellent Waleed Aly once did a segment on the inherent sexism in not assisting women like me. Louisette turns six in January and TJ is three and a half, so I’ve had the unwieldy annoyance and pain of a pregnancy-style belly for more than six years, and have been trying to get the necessary surgery for three years.
Here’s the awkward bit: Because re-attaching stomach muscles involves dealing with skin, it’s plastic surgery. It also makes women look less pregnant. I imagine this is why male politicians refuse to fund it. Women could take advantage of the system just to restore their exhausted parasite-hosting bodies to their previous appearance! Women who’ve had an improbably large object rip its way out of their most sensitive organs might have one aspect of their horrifically violating journey to motherhood erased! Women might have one less complaint that needs to have, “But of course I wouldn’t change a thing! I’m just so thrilled to have a child!” tacked onto the end.
I’m one of the lucky ones, psychologically. Both of my pregnancy experiences were awful awful awful, but they’re over now. My births went pretty well. I noticed and suffered from various problems the medical industry could have done a lot better, and I hope that makes me a useful advocate for other pregnant people in future.
Becoming a mother gave me a long list of permanent chronic conditions that ultimately made me unable to care for my own children (and also cost me my job in childcare, which I loved). This year I’ve gotten to the point where I can mind both kids solo for about three hours fairly consistently, or one for a full day. My kids are pretty great—healthy, happy, and fundamentally decent human beings. But I’m disabled now, because of having them, and that—well, it just sucks.
(Pause for cuteness.)
It’s very clear that not everything that’s wrong with me can be fixed. I realised that a long time ago, and the writer and advocate in me is glad, because I know that I can now write some types of disabled characters really well. My pain is fodder for better stories—the kind that can give hope to people who need it, and a bit of empathy to everyone else.
I still have hope that one day I won’t feel afraid of my children any more. Right now it hurts to stand, to make a sandwich, to pick them up, to buckle them into the car, to walk with them to the shops (or to the front door of the school), to get down on the floor and play with them, and so on. Sometimes I don’t care, and I pretend nothing hurts. Other days it feels like my kids are torturing me on purpose. Most days I plan carefully: How much strength do I have? Is today a good day or a bad day? How can I make the kid/s feel loved without risking long-term injury to myself? What corners can I cut without hating myself or neglecting the kids? How do I manage my stupid body so it lasts until bed time today?
I’ve had a few wins along the way. With TJ I had daily migraines (mostly “silent” migraines that are mainly aura with not much pain) for the whole pregnancy, and then they just… didn’t stop. I now take a medication that has 90% solved the migraine issue (although I haven’t yet recovered from the brain damage that resulted from two years of daily migraines). I had a minor operation a few years ago that improved some other stuff, and I have a third major problem that can also be treated with pills. (The second and third conditions in this list are a bit too personal for a blog.)
(Pause for cuteness.)
Here are some things that will definitely/probably be improved by my stomach surgery:
-vertebrae and disc spinal injuries (the pain will be eased after the surgery because there won’t be a giant stomach pulling my spine out of alignment) causing significant pain and disability.
-prolapsed uterus (hopefully all my misplaced organs will slot neatly back into place)
-abdominal diastasis (that’s what the surgery is actually for)
-umbilical hernia (which will definitely be fixed by the surgery)
-pain-related depression and anxiety (which will be improved by surgery)
I’m also looking forward to seatbelts working properly again. At the moment, they slide up my stomach and cut into my neck (literally; I have a lovely connection of skin tags on each side of my neck; half from driving and half from being the passenger).
And I might just be able to wear pants again, which would be awfully convenient. And swimmers. Technically I can and do wear swimmers, but my stomach is so disproportionate that they’re really uncomfortable.
Lotsa nausea will be reduced or eliminated, which will be nice.
And I’ll be able to cut my own toenails without swallowing vomit (due to pressing down on an unprotected stomach in order to reach my feet). That’ll be nice too.
It will be awesome to be able to wear dresses again. It took me far too long to realise that dresses always exaggerate a big stomach, because they’re designed to show the nice straight lines of a body (which pregnant bodies don’t have).
Anyone who’s been pregnant knows the pain of picking things up from the floor. I’m really looking forward to that being less of a big deal.
And of course, I won’t look nearly as pregnant! I’m not expecting a bikini body—in fact I imagine I’ll still look a little bit pregnant—but it’ll be soooo much better than my current reality. When I’m faced with large social events I often have quite bad panic attacks beforehand due to knowing most of the people there will assume I’m pregnant. Did I mention I already had a social anxiety disorder?
Here’s a real story from literally less than a week ago:
Nice Lady, sympathetically: Oh, how are you doing?
Me, immediately realising what she’s getting at: I’m fine thanks.
Nice Lady: It’s such hard going when you’re so far along!
Me, thinking both, “Well this is an especially bad one” and “She’s old and I’ll probably never see her again. Let’s not correct her”: Thank you.
Nice Lady: So when are you due?
Me, thinking, “Fuck. Oh well here goes”: I’m not actually pregnant.
[Cue classic conversation in which I try to make someone feel better for making me feel like absolute shit.]
I once had a man I didn’t know approach me at a funeral and ask me my due date while rubbing my stomach.
Aaand I once went into a physio appointment at the hospital where I’d recently given birth, and seen that exact same physio a week earlier for a pre-birth appointment, and had the physio look at me and say, “Weren’t you going to be induced last Friday?”
Yes. In fact I was induced last Friday. The baby was out.
In her defence, this is what I looked like that day (and ever since):
If you want to be respected by a medical professional, be very careful not to tick any of the following boxes:
- Being female. Statistically, reports of female pain (and various other issues) are underestimated by medical professionals across the board.
- Being overweight. Were you in the healthy weight range before you began to suffer from [insert medical condition here]? It doesn’t matter. If you are fat, your medical condition is your fault, or at least made worse by you.
- Being mentally ill. Why should anyone listen to a crazy person? If you talk rationally, your mental illness isn’t serious and you’re probably just looking for attention. If you talk irrationally, you’re an irrational person and anything you say is suspect. (Fun Fact: Although “Violent offender was mentally ill” is a common theme in both fiction and real-life news reporting, mentally ill individuals are far more likely to be the victims of violence than the perpetrators. Because who listens to the mentally ill? Not doctors or police or reporters or writer, apparently!)
- Being pregnant, post-partum, or a mother. Women’s uteruses and hormones have been the ultimate go-to cause of all physical illnesses and pain since Ancient Greece. Not only can a doctor comfortably diagnose any disease as “women’s problems” (and therefore natural), but any women who continues to complain is violating the well-known fact that motherhood is a BEAUTIFUL and NATURAL thing, and all that pain and illness and childbirth and breastfeeding/bleeding and 17% lower wages and sexual harassment is because we’re just SPECIAL and PRECIOUS and PRIVILEGED to be the bearer of little health-destroying bundles of JOY. I couldn’t tell you how many times I was told that my pain levels were a normal part of pregnancy. Actually, I’d injured my spine and dislocated my hip, both of which still cause me pain today. Thanks, medical science!
For the record? There’s probably no high greater than the high of having a baby. I’ve been there, and it’s awesome. A lot of doctors are aware of their biases and are working on making things better. And let’s be clear: I have two kids, so all the shit I waded through evidently didn’t put me off motherhood. There are lots of precious and beautiful aspects to motherhood, but they tend to come at a high cost (higher than any man ever has to pay for fatherhood). Higher than usual, in my case—not just because nature is an asshole (although she is) but because our society as a whole still has quite a ways to go before women, especially sick women (or women of colour, which I am not) are treated with the respect they deserve.
Ultimately I was forced to go the private route for this surgery, which costs around $15,000. Super fun when I don’t have a normal job any more!
You can donate here, if you like.
This blog post came up in my facebook feed today, and I vaguely remembered it so I went back and had a read. It was written three years ago, when TJ was a tiny baby. It starts out, “I like to think about what I’m doing as a parent, and of course talk about it, because that helps me to understand what matters to me and what I can just let slide.”
That certainly hasn’t changed!
The kids are still pretty decent human beings, so THAT’s good. They barely ever eat a decent quantity of vegies, but at least they don’t eat much junk. They’re almost always well behaved, which makes Chris and I look good (them being functional members of society is a pleasant side effect, too).
The dummy drama is long over. It was difficult for a couple of weeks, then fine. It’s definitely worth reminding myself how much dummies are not an issue any more. Three years ago, that was on my mind every waking hour.
Babysitting-wise I’m now able to get through a full day with both kids, which is a huge achievement. It’s not an easy thing to get through a full day, though. (The Christmas holidays loom ahead, and they won’t be easy.) I haven’t been well enough to go back to work at all (other than writing), and I cope a LOT better if I’m looking after one kid at a time (Louisette is at school and TJ in daycare Monday-Tuesday-Wednesday so I get plenty of one-on-one time with each of them). So do the kids, not surprisingly. The get on really, really well—we have been extremely lucky in the mix of personalities—but no child plays well with another child every waking minute.
(My writing, of course, has taken off spectacularly in the last three years.)
Drool is no longer as issue. Easy peasy. The kids sometimes have food on their faces, but we don’t need a sheet under the table any more. Yay!
The kids watch SO MUCH TV. As I said before, I’m sure I’ll set TV limits sometime before the kids leave home. TV is free babysitting, which is hugely helpful. If everything else was perfect, then I’d probably focus on TV stuff. And if I had more significant issues, nothing on this list would make me blink an eye. Except maybe….
Toilet training suuuuuuuuuuuuuuucks. That’s definitely the biggest parental stress right now. Presumably one day it’ll be like the dummy thing, “Oh yeah, I remember that sucked at the time, but it’s such a long time ago now.”
I have to choose to believe that. It’s been three years of misery toilet-wise and we’re seeing various experts nowadays.
The house is messy. I don’t have the energy to make the kids tidy up every day, especially at night when we’re all tired. But there are some things the kids usually do quite well, like putting their shoes in the right place. Usually they’re fairly obedient.
Louisette definitely has ADD. She’s keeping up academically due to being naturally intelligent, but I’ve stopped doing homework with her because it’s just too hard. Since ADD probably has an impact on toilet training, we’ll most likely try medication before the end of this year. It will be VERY interesting to see how that helps her cope with other life things, like emotional overload and reading.
Looking back, I wrote that previous blog entry at a really hard time. I hope that in three more years I’ll look back at this year—a year of miserable toilet training and lots of bad health for me—and say, “Those problems were such a big deal, but they’re in the past now.”
My kids are fundamentally healthy and happy, and that’s any parent really wants.
Our house is back to normal (well, it’s tidier than usual), and school is back on.
I didn’t do nearly as much around the house as I thought I would last weekend, and I didn’t write as much as I thought I would either. Today’s writing was ridiculously slow too, which is driving me bonkers.
Fundamentally, I need to calm way down, especially about the expectations I place on myself. This disabled thing really is a drag.
My medications have been switched up, too. I’m taking 50% more antidepressants (I’ve been pretty miserable ever since the diabetes diagnosis) and a third diabetes pill. So I shouldn’t be surprised that I’m not feeling great (I should feel better in a week or two). Plus Conflux was only a week ago, and if this is the post-conference low then it’s much milder than usual.
I just wish I could do stuff like I used to be able to do.
A couple of weeks ago I set up a small tropical fish tank. So here’s a cute pic of that, taken as the kids were examining the fish through binoculars and a magnifying glass.
It’s been an interesting year health-wise.
Long story short, I have diabetes now (which is terrible, but also means I’m already on meds that are helping my overall health, yay) and I just discovered that my fifth attempt at getting stomach surgery through the public system has been refused.
I will be getting the surgery privately, which will cost around $10,000 (surgeon + hospital + anaesthetist), and will most likely happen in June or July this year.
It is extremely exciting to finally know it’s really happening!
Some people on facebook offered to help with the cost, so I’ve set up a donation page here. I’m already very touched to see so many people helping out.
For those interested in knowing all the history of this journey…
My first pregnancy was very, very unpleasant. My hips and back were permanently damaged.
This is what I looked like before having kids (not my normal attire, but close enough :P):
Louisette weighed 4.15 kilos (9.15 pounds; an average baby is 3.2 kilos, about 7 pounds).
Something in my chest was screwed up, meaning that every time I lost a couple of kilos (trying to get back to the healthy weight I started with) I got very sick, usually with bronchitis that started off acute and then hung around for months and months. The great news on that front is that I’ve recently discovered that REFLUX is the likely cause (yes, another classic pregnancy symptom that just never quite went away) and all I need is a course of pills to not just end the current round of coughing but to help heal my stomach long-term. Yay for pills! Yay for modern medicine!
When I realised I was just getting sicker as time passed, I decided to get pregnant with our second child so that I could get it over with sooner—and then get things fixed that could only be fixed after I was done having kids.
(Still worth it.)
During this period, someone congratulated me on my (non-existant) pregnancy about once a month. I also discovered that I was now intolerant of FODMAPs (ie, all sugars other than glucose—most fruit, most vegetables, dairy, and sweeteners), which made it tricky to eat healthily.
The second pregnancy gave me the gift of gestational diabetes (and firmly established that I am intensely intolerant of all artificial sweeteners, especially the “natural” ones like stevia), and intense, unrelenting pain. My hip would fall in and out of joint as I turned over in bed, and the back pain from spinal damage was so intense that it was a factor in my choice to have an epidural. (I still remember those pain-free hours with great affection. Yay for epidurals! Yay for modern medicine!)
While pregnant, I saw a nutritionist who was impressed with my sound knowledge of food groups and how to eat well. She told me to do my best within my food intolerances and physical mobility.
I exercised as often as I was able, but it was quite risky due to an irritable uterus, culminating in a hospital visit as TJ was almost born a month early. (For the record, this means my labour was four weeks long—but of course it didn’t hurt much during that early stage.)
TJ was induced (gestational diabetes babies usually are induced due to weight concerns) and weighed 4.325 kilos. He’s never shown any sign of damage from the gestational diabetes, thank goodness.
During the period after TJ was born, someone congratulated me on my (non-existant) pregnancy about twice a month. I went to a family event and a man I didn’t know gave me a pat on the belly and asked when I was due.
This photos were taken before and after TJ was born:
Did I mention I have a social anxiety disorder? And depression? And of course PPD (post-partum depression) because I was and am literally afraid of my kids, since looking after them so often causes back injury or panic attacks even now.
I lost the pregnancy weight (from the second pregnancy; I still had an extra 20 kilos from the first pregnancy) but then regained it as I dealt with daily migraines, chronic bronchitis, a new set of food allergies (salicylates, which neatly removed almost all my remaining “safe” fruits and vegetables, as well as all nuts and some meats), arthritic feet, prolapsed uterus, etc.
My stomach felt wrong. Different than before. Every medical professional I spoke to told me to wait, and it would get better. (Obviously, it didn’t. It’s normal for the stomach muscles to separate during pregnancy, and then mostly close up over the months after birth.) I was given “safe” physio exercises that underestimated the amount of permanent damage, and injured me even more (only temporarily, fortunately). I was told that plenty of women have babies and don’t complain about their changed bodies like I do. I was told that most mothers have a post-partum bulge, and I shouldn’t expect a bikini body (since when was I a bikini model??? lol…)
I saw a nutritionist, who put me on an elimination diet for 6 weeks. It became clear that salicylates were a problem for me… but it also nearly destroyed me cooking up to three different meals each night (I had three “safe” meals which I just ate every night, but of course that didn’t meet the needs of the rest of the family) as I catered for myself, kids, and Chris. My habit of regular exercise was broken, and I kept getting infections (throat, tonsils, chest, etc) that prevented me swimming.
Once I’d reached a truly horrifying weight, people finally stopped asking if I was pregnant. That was such a relief. I still find clothing really difficult, as even the biggest sizes aren’t designed for an enormous stomach bulge (most maternity clothes don’t fit me either, due to already being tall at 175cm).
I was not able to return to work at the childcare centre that I’d enjoyed so much post-Louisette and pre-TJ during the two months between months-long hip and back injuries. (Having Louisette actually cured my depression, but it comes back with physical pain/illness. There is still hope that if my body starts to behave, my mind will be non-crazy too.)
I had an operation that mitigated the effects of the prolapsed uterus, and I was able to work at a new job for about six months. Unfortunately standing/walking was getting more and more painful so ultimately I had to stop. Luckily my writing really took off at just the right time, so technically I was never out of work. Obviously writing isn’t the kind of job that keeps us in caviar and champagne (and besides, I’m intolerant of alcohol now)—the average full-time Australian writer earns around $12,000.
Go on, buy my book.
I began to realise that salicylate intolerance had a wider range of symptoms than FODMAP intolerance (including skin rashes, irritability, and joint pain) so I decided to try to do a salicylate elimination diet to see how much of my pain/depression could be cured by eating differently (and using special toothpaste and other products—salicylates are in a bunch of things) so I slowly drew up the courage to see another nutritionist.
She and I exchanged several emails before meeting, so she was warned about my cornucopia of physical and mental conditions, and knew that I wanted help going off salicylates. Unfortunately, she decided before we met that we should ignore salicylates entirely, since it was too difficult to deal with them and eat well at the same time. So that was a bust.
I’ll be seeing yet another nutritionist now I’m officially diabetic. Hopefully they don’t choose to ignore things that are inconvenient about me.
There is a lot of anecdotal evidence saying that fixing a separated stomach also fixes or improves a lot of food allergies. It would be awesome to be able to eat a balanced diet without it making me sick.
Another piece of good news: I am 90% migraine-free thanks to seeing a neurologist last year and working very hard to find the right medication. It’s entirely possible that with experimentation and medical assistance, I can actually reach a normal level of health for my age.
Once TJ was six months old, it was clear my stomach wasn’t going to get better, and my GP referred me to both Canberra Hospital and Calvary Hospital.
-Canberra Hospital lost the referral.
-I eventually got to see a surgeon at Calvary Hospital, who told me that my problem was probably too minor to fix and that it was out of his hands, but referred me to a CT scan place. The scan revealed that my stomach gap was 9cm wide. I returned to the same surgeon, who told me that it was too big for Calvary, and I needed to see a surgeon at Canberra Hospital. It was out of his hands. (We actually met in a room at Canberra Hospital, since this doctor works at both.)
-The scan also revealed a 2cm spleen abnormality, so when my GP wrote me a new referral for Canberra Hospital, she referred me to a general surgeon on the basis that maybe he’d want to operate on both things at the same time. When I finally saw the general surgeon, he told me the spleen thing was totally fine, showing me images to prove how it was centrally located and thus unlikely to burst and kill me (2-D images, despite the fact that the spleen is a 3-dimensional organ. I was never scanned from the side). By that time I’d had a second scan 6 months after the first, which showed no growth. So, not dying of aggressive spleen cancer. Yay. He told me he couldn’t sew my stomach back together (and acted as if the surgery was impossible, rather than referring me to a colleague who could do it), but could fix the umbilical hernia by adding surgical mesh over the gap in my stomach. I ultimately said no, since it would make the full stomach surgery more complicated and less likely.
-At this stage I contacted the health minister, and was told that my surgery would happen within three months. Wow! Unfortunately, that was still the hernia surgery, not the actually-fixing-the-primary-problem surgery.
-I looked up surgeons and found one who was both a private and a public surgeon (Dr Tony Tonks), and made an appointment with him. I figured a private surgeon would be honest about surgery, and then once he’d confirmed that the surgery was possible and useful, I’d let him know I needed to go through the public system. I did that. “I could tell which surgery you needed when you walked in,” he said. I told him I needed to go through the public system, and he told me that he was so frustrated by the lack of support for this kind of surgery that he no longer does it through the public system. He wrote referrals for me, to Canberra Hospital (to the right kind of surgeon this time), and to a hospital in Sydney where they had done that kind of surgery relatively recently.
-The Sydney hospital called and told me that they no longer do that kind of surgery through the public system.
-The Canberra Hospital apparently sent notice to my GP that they no longer do that kind of surgery. I waited nine months and then called the hospital to follow-up. After the phone rang for ten minutes, someone answered. That was when I found out that I’d been refused the surgery (sight unseen) way back in July last year.
-I gave up, and called Dr Tony Tonks’ office to begin the process of prepping for private surgery. I have an appointment for late May, and will have the surgery 3-6 weeks after that.
After all this time, I’m very excited to finally know that it’s really happening—and with a surgeon who treated me like a human being, which is a particular bonus.
So feel free to give me money to help me on that long road to recovery.
Several people have donated since I began writing this post.
Have a kitten.
For those who aren’t up to date on their classic picture books, “Little Miss Helpful” is about a person who’s always trying to help people and ultimately makes their lives much, much worse. One of her friends is sick and trying to rest, so she shows up to help. She wakes him up over and over again in the process of attempting to clean for him (destroying his kitchen in the process), and ultimately both are injured and I presume the friend gets pneumonia and dies. (I’m extrapolating from the fact that he ends up in a pond.)
(Pictured: An unrelated children’s picture book.)
So this week I’m struggling to accept the fact that an introverted kid who is not mine doesn’t get to sit next to her best friend (aka my kid) six hours a day (but is still able to play with her multiple times a day). Her mum is long since over it but I’m still in overprotective mode.
Today I have a brand new drama that also fits the “Felicity Banks clumsily attempts to help a person/people who would be much better off if she didn’t bother” narrative.
The oversimplified version—also the version that I’m emotionally responding to—is that I wanted to write a story with a protagonist who was disabled, in part because that’s one of the many groups suffering from Trump’s power… but it has become clear that I’m not smart enough to cause more good than harm.
Like most oversimplifications the above is not entirely true, but has an element of truth in it. It was mostly a structural issue that caused me to need to drop that particular aspect of my protagonist. Still. . .
It’s hard for privileged people to learn how privileged we are. It doesn’t matter how many advantages you’re born with, life is hard. Stuff happens. And when someone points out that an aspect of their life is harder than yours, it hurts. It feels like your own struggles are less legitimate. When you’re trying to remember whether “gay” is still a insult or not, and then you find out that intersex is a thing that you also need to understand and learn about, it feels like people are just taking offence no matter what you do.
Those feelings are knee-jerk reactions, and they’re not actually true. There’s a really thoughtful article about emotional exhaustion here.
So yes, privileged people also have struggles. But part of being a decent human being is to get past that knee-jerk “Arg too hard!!” reflex and realise that it’s vitally important to acknowledge other people’s struggles, and to use what power we have to help others.
I’ve been passionate about discrimination against people who are LGBTIQ since before I knew that one of those letters applied to me. I’m a Christian and have felt since my teens that Christians treat gay people and Muslims poorly—which is exactly the opposite of what Christian behaviour should be. But even thought I’m disabled myself, I’ve never fought for the rights of people who are disabled. (Partly, if I’m honest, because I’m still coming to terms with it in my own body and mind… after fifteen years.)
The term “Social Justice Warrior” is an insult, but since Trump was voted in as US president the world is badly in need of exactly that kind of warrior to mitigate the damage he is doing to pretty much every vulnerable minority group anyone can think of.
When my daughter found out about Trump, she gave up her allowance for months so she could donate it to kids and communities in the third world. I thought about what I could do and realised that financial help and/or things that involve me leaving the house (like protest marches) are rarely an option. But I still have a working brain (sometimes) and I have two powerful resources at my disposal: my imagination, and my readers. If I write interesting and diverse characters, it will help all of my readers to understand and empathise with people who are different to them. And it won’t feel like work.
I can’t earn a living wage; I can’t walk or stand or march without pain; I can’t vote in US elections; I can’t run to Nauru and singlehandedly gather up all the innocent children and bring them safely home with me; I can’t roam the streets making sure non-cisgender people aren’t getting beaten up; I can’t teach manners to Islamophobic trolls; I can’t stop Australian politicians from stoking racist fears in my own country—but I can write.
Here is a music clip (technically an ad for last year’s Paralympics):
I watch this all the time. It’s one of the greatest music video clips ever made. I actually have a real-life problem with Louisette being jealous of people with physical disabilities because of this clip (specifically, she wants to have either one leg—so she can do a kick-ass hopping high jump—or no arms so she can be an awesome drummer). I have to keep explaining to her that if she wants to have the amazing abilities of these musicians and sportspeople, then she has to train like they do.
Unlike most inspirational stuff (which is nauseating at best, and insultingly incorrect at worst) this actually works for me. I know that every single person in this clip has thought, “My life sucks! I can’t do anything! My body is holding me back from the life I want to have! This is so unfair!” at least once. I’m technically disabled physically, but my depression usually bothers me even more than the physical side, so getting told to look on the bright side or cheer up (by healthy, not-depressed people) often actually means, “Stop bothering me with your pain.” The clip above makes me feel good with the music, and means more to me than any other song because every person in it still has big parts of their life that suck. It hits the exact right place between pity and awe (both of which are foolish reactions able-bodied people often have to people who are disabled, ie “Oh, poor you!” or “Wow, you’re SO brave!”). Actually, people who are disabled do have unique challenges, but they’re also just… people. (There’s an interesting article about the social pressure to be the “perfect” disabled person here.)
The clip cleverly erodes the patronising pity I might feel towards people who are physically disabled in various ways. There really are certain elements of physical disability that are wicked cool. These are my two favourites:
- Prosthetics. The whole field of prosthetics is evolving so quickly that it’s incredibly exciting. Those curved “running legs” sportspeople use are actually faster than normal legs. There are other prosthetics that also do certain things better than nature. I’m with Adam Hills (who, incidentally, has one leg): Instead of calling people “disabled”, he says we should call them something that reflects how freaking cool their bodies are. Hills suggests “mutants”. Like, X-men style. Obviously that’s not going to happen, but there’s truth in the comedy. Now that I think about it, I actually had a one-legged romantic interest in “Scarlet Sails“, just because piracy does rather lend itself to non-standard body shapes. She even has a slightly-awkward sex scene due to my remembering Adam Hills talking about how he always needs to remove his prosthetic leg before sex. And in “After the Flag Fell” the main character almost certainly loses an arm—not just because steampunk lends itself to cool prosthetics, but because he’s an actual historical figure who lost an arm due to a battle wound.
- As a failed linguist (literally; I failed my second semester at uni) and a retired cross-cultural missionary (also literally; for ten years I worked towards a career in Indonesia teaching English etc to kids in the slums), I’m fascinated by the deaf community. Sign language is such an interesting set of languages, and the community itself is just that: a community. A lot of deaf people who could have their hearing restored through technology choose not to, because their deafness is as much a part of their culture as breasts are to a woman (As a breast owner, let me explain: So what if I’m not breastfeeding and never will? So what if my breasts require expensive specialised clothing and constantly get in the way? They’re mine and I’d be VERY upset if they were removed).
(Picture: Would YOU waste time looking at her wooden leg?)
So as I was working on the outline of an interactive story, I had an idea. I could have the reader choose a disability for the protagonist from three options:
- Someone with a double above-the-knee amputation. This is a significant disability in the real world, but in my world the character lives in an enormous floating city (influenced by, among other things, the Bajau people, a refugee people group who live almost entirely on water and have extraordinary abilities as a result) so I wanted to write that they had the usual prosthetics (cosmetic, running, practical, “shorties”, etc) as well as a prosthetic tail that makes them look like a real-life mermaid—including a superior swimming ability. I’m already jealous of this character’s ability in my mind, despite the fact that they’d also have significant disadvantages.
- Someone who is mute. Originally I wanted to write a character who was both deaf and mute, but a writerly friend pointed out that not being able to describe sounds would cut back on sensory immersion (a vitally important aspect of writing; my writing isn’t good enough to make up for it) so I toned it back. The protagonist’s city is made of transparent spheres, and getting from one to another is slightly awkward. I’d already designed it as a place where everyone uses sign language every day to chat through the glass during that awkward transition from one sphere to another. As I was thinking about the real-world deaf community, I developed my setting into a place with a large minority of deaf-mute individuals (not such a surprising thing, given a recessive gene for a condition causing people to be deaf-mute, combined with a relatively small population). That way I could develop a whole bunch of different and complementary sign languages (slang, trading, one-handed, something specifically for talking underwater, something specifically for the protagonist to talk privately with their best friend, etc). It would be such an interesting and fun world! Languages are fun! I’m also borderline bilingual (Indonesian) and have lived in Indonesia with Indonesians for six months, and observed firsthand the way language changes the way I thought about things.
- A phobia of deep water. This is actually one of my own (extremely numerous) phobias (making research a breeze), and of course would be very difficult when the protagonist lives in a floating city. Unlike depression, it’s specific enough (and has so little effect on my actual life) that I could write about it without getting depressed myself (I’ve written a story about the real-life experience of depression, but it’s…well, depressing). Although I wouldn’t recommend an anxiety disorder to anyone (duh), it DOES have the positive side effect that I deal with fear every day, so when something really scary happens (like having a baby, or having Chris in hospital with a rare disease that is both incurable and potentially paralysing or deadly… yes, that happened; he got better) I actually handle it quite well. It also means that the character would adjust more easily to the time they spend on land (the Bajau people get badly landsick, and so will my non-player characters—but less so if they choose option #3).
So now that everyone is dying to read my nonexistent book, here’s why it probably isn’t happening:
Good intentions are not the same thing as good results. Obviously, my aim is to write a positive, enjoyable, interesting story that also gives people with certain disabilities a chance to play a character who actually shares that aspect of their life. And a story that helps people who don’t have any of those conditions to feel that classic “oh they’re just like us” moment that we all need to have about… well, everyone who is not our physical & psychological clone.
One of the places I started my research was in the “Choice of Games” forums. “Choice of Games” is a hugely influential American interactive fiction company. (I am not associated or affiliated with them in any way; but I’m a huge fan and a Hosted Games author several times over.) They work hard to be inclusive, and it shows. The forums are a friendly, welcoming, helpful, and diverse place. I have accidentally stepped on people’s feelings there in the past (again, helping where help was not wanted) and people took me aside privately, and politely taught me how to be a better person. I was also forgiven by the people that I hurt.
I have genuine friends there that have made my life better, plus a really cool arch-enemy (you can read about him in the special features of Starship Adventures), and even someone I’ve since met in real life. Some of them are very different to me in various ways, and some are very similar (poor things). But I knew that I needed to research deafness, muteness, and the lives and feelings of amputees in order to write about them in a way that did more good than harm. I also knew that my research needed an extra layer: I needed to find at least one beta reader from the groups I was trying to represent. They would pick up on dumb mistakes I made. The forum was the perfect place to start looking for those beta readers.
(Pictured: Not a suitable beta reader.)
So I started a new topic, called something like, “Looking for beta readers who are deaf-mute or double-amputees”. I winced as I wrote “deaf-mute” and “double-amputee” but even someone with one leg has a very different life to a person with both legs amputated, so I needed to be specific.
Within 24 hours people had already replied telling me they’d thought (based on the title) that I was deliberately trolling the forums, and an admin had changed the title (with my belated blessing) to be less offensive.
So as quickly as that, I screwed up. Alarm bells began ringing, and they continued ringing as various people talked to me via the thread, communicating (gently) how very uncomfortable they were that someone so ham-fisted would be writing such a story.
I immediately googled the terms I’d used, looking for less offensive words to mean “deaf” “mute” and “amputee”, while also asking the people in the thread. I found that the correct words are (wait for it) “deaf”, “mute”, and “amputee”. I also found that it’s preferred that people put the “person” first, ie I should say “A person who is deaf” rather than “a deaf person”. But clearly the title I used for the forum topic was still deeply offensive.
So I’m already at a loss. How can I write about this set of disabilities when it’s apparently not okay to say the words aloud? Someone (rather brilliantly) suggested that hey, it’s a fictional world, why not make up words? The only problem is that I then have to explain that “sffhuiwe” (or whatever…) means “deaf”. So we’re back to square one.
I have since worked out that (a) The thing that’s offensive is that my attempt at brevity made it seem like the disability was the most interesting part of the character, which it definitely isn’t, and (b) It’s easy enough to describe the actions of the characters without using any of the words that may be offensive to some people.
Now is a good time to mention that Australians have much more casual manners than Americans. It’s actually something I love about Australia. I find it more honest and open and straightforward… but I’ve run into trouble at least once before because people thought I was being rude when I thought I was being friendly. So that complicates matters, especially since the vast majority of my readers are from the US.
In the meantime, someone I deeply respect (especially in the field of interactive fiction) pointed out that if I had the reader choose one of those three options, it was structurally saying that all three options (I called them “quirks”) were comparable. Which is just not true (even though it’s true within the story).
So that’s almost certainly the nail in the coffin for my “pick a quirk” idea. Which is sad, but a far better fate than having me write 200,000 words that made the world worse.
So that’s what I’m crying about today. I really wanted to represent disabled people in fiction, but my own limitations (and privileges) make it a terrible idea.
Having written all the above, I’m no longer sure that giving up is the right option (even though it almost certainly is) so I’ll think some more, and talk to some more people, and make my final decision after that. But before I make too much of a nuisance of myself.
As always, the questions that matters most to me is, “Will this cause harm?” but the second most important question is, “Will it make the story better?” It’s clear to me that these aspects of a fully realised and interesting character absolutely DO make the story better. That’s not an easy thing to give up.
Lately, when I see someone walking, I get panicky.
Each step is so small, and it seems like they probably have a long way to walk. Maybe they’re shopping, maybe they’re walking along the side of the road. Either way, what they’re doing seems to me like an impossible task. The weight of that impossible task feels like an ocean on my back. I have so much to do, and so little strength to do any of it.
I don’t walk much. For various health reasons, a ten-minute walk can leave me crippled for a fortnight. It’s been like this for years now, and I can’t remember what it was like to be healthy.
No, I do.
I remember a family holiday, when I was a teenager. We stayed somewhere with a pool, and I jumped into the delicious clear water almost the second we arrived. I might have still been fully dressed, except for kicking off my shoes. I remember thinking how I was young, and healthy, and how easy it was to move through the water.
I also remember a window of maybe two months, when I was an adult and healthy. Louisette was about six months old, and my back had just stopped hurting from that first pregnancy. I was in love with her, high on hormones, and my body felt strong. For the first time in over ten years, I wasn’t mentally ill. I remember feeling so powerful when I picked her up out of her car seat, and how good that felt. I remember not being afraid of what the day would bring.
That window of good health ended when my hip fell out of joint one day, and it hurt hurt hurt for months. (After that I had bronchitis, and then I hurt my back, and then I realised I wasn’t getting better and I talked Chris into letting me jump into a second pregnancy so I could get the whole pregnancy thing over with.)
I remember changing a pooey nappy in the back of the car as I took myself to a free post-natal physio and rain and hail fell on my back while Louisette screamed at me. I remember applying for a babysitting job and trying desperately to mask the agony as the mother proudly invited me up the stairs to see the rest of their million-dollar house. (I succeeded, too: I got the job and I enjoyed it. Of course my ability to babysit is over now. Just this year I tried to look after my beloved nieces for a few hours while my sister was at my grandfather’s funeral, and I ended the day screaming at strangers and throwing things.)
Today’s a bad day brain-wise. I’m wading through mud and I hate everyone I see.
The up side is that when a day is so moustachio-twirlingly bad, it’s obvious that my brain is messing with me. I can’t delegate everything, but I can delegate some stuff, and I already have. It’s so operatically bad that, for the moment, the fact that I brushed both my hair and teeth today counts as a win.
The down side is that the ocean is still there pressing down on me. It’ll be there tomorrow, and the next day, and if I don’t manage to trick my brain into letting me be semi-functional ASAP there is plenty more for me to lose than just one miserable day.
Merry f*cking Christmas, everyone.
I like to think about what I’m doing as a parent, and of course talk about it, because that helps me to understand what matters to me and what I can just let slide. Some things I know I’m doing really well – Louisette’s diet is amazingly healthy a lot of the time (I can literally eat a chocolate bar in front of her and she won’t for a second think she’ll get a taste or treat for herself – when she wants comfort food, she asks for milk. Obviously I need to change my role-modelling, but right now I’m also eating a balanced diet and losing weight, which is impressive enough), and she usually plays very well with others. Her physical skills and vocabulary are excellent too. She is very brave and very friendly (I often see her initiating games with other kids at Questacon), imaginative and gentle and clever (some of which is clearly innate). She’s somehow not managed to pick up on my swearing yet. She can last up to about twenty minutes playing alone in her room on command once a day (rest time) despite being a strong extrovert. TJ is too young to have bad habits, but he’s clearly happy and healthy. On the other hand….
The dummy thing (times two).
Both kids are total dummy addicts. Louisette used to have good boundaries – dummies were for sleep, illness, car rides, or sitting on the toilet – but since TJ was born she’s become obsessive and when we don’t have visitors over she pretty much always has a dummy in her mouth. We fought it for a bit, but that caused her to say she was sad or scared in order to get the dummy, so ultimately we decided it was better to let her have a dummy than to let her self-identify as chronically depressed at the age of two! The brilliant thing about dummies is that, unlike thumbs, they can be taken away. Having a few days or even weeks of misery is vastly outweighed by having something largely harmless than she can use to regulate her emotions. She also has nightmares now, and has been picking at her fingernails, both of which are more concerning. All three activities have improved since TJ began settling in his cot for at least a few hours most days (meaning he’s not the centre of all household activities 24-7), and I hope with a bit more care and time Louisette won’t be anxious any more.
As a baby, TJ’s dummies cause only minor parental judgement. We had strict dummy rules for Louisette from when she was a baby – but TJ can have his whenever. As a result, we’ve had WAY less crying from TJ. So I’m comfy with the judgement there. (Not comfy enough not to write blogs about it, but that’s me. . .)
I’m so weirded out to need babysitting – yet I need it so badly that I now have a regular schedule with at least some babysitting every single day. It feels so pathetic to spend so much money on something that, apart from anything else, is my own actual paid job. Until I got sick with pregnancy, I never once paid for babysitting for Louisette. When she was born, I really was that ecstatic glowy enjoying-every-minute (not literally; no-one enjoys EVERY bit of motherhood) new mum. . . but since TJ was about six weeks old I’ve had an awful time mental-health-wise. Dieting (including swimming, which uses up all the free babysitting from grandparents), physical pain, and concern for Louisette certainly don’t help (my Monday bit of babysitting will usually be just TJ, so I can spend some uninterrupted quality time with Louisette). I’m getting reconciled to the babysitting idea by recognising that it’s totally the kids’ fault: the combination of an extravert developing anxiety (something she inherits from both sides of the family, unfortunately, and something I will save her from if I can) and a baby who doesn’t sleep well means that having only one parent on hand for 10 or 11 hours a day just doesn’t work.
And the drool
Somewhat related to the dummy addiction mentioned above, Louisette drools like CRAZY. Without a dummy it’s not too bad – with a dummy, it’s really bad. I’m hoping that the only dramas in our house for the next year or so will be toilet training for Louisette and starting day care for TJ. . . which should mean that we can handle eliminating all dummies at once shortly after TJ’s first birthday. If only all problems could be ceremoniously thrown in the bin. I’m hoping the drool will clear up soon after that.
Food mess bothers me so much that I don’t dare try and regulate it (except for extreme events, like deliberately pouring out water or throwing food), because then I’d have to lift my expectations – which wouldn’t be met, which would make me angry. Louisette also has an amazing range of food-related activities (painting action scenes in yogurt; building a village from her vegetables; wearing carrot rings on her finger, etc) which are probably educationally amazing. Plus she’s usually exhausted and emotional by dinner time (we don’t eat until Dad gets home at 6:30) and dinner time is often really difficult without adding manners to the mix. This is another area where I hope to lump the kids together so we don’t have to go through a difficult transition twice. Once TJ’s old enough, we’ll start upping our table-manner standards.
And the TV
CJ and his dad both have ADD, and CJ and I watch TV to relax (we relax a lot, when we can) so based on a science study or two we aimed to reduce the kids’ risk of ADD (and partially break our own antisocial habits) by trying not to let the kids watch TV until at least 2 years of age. With Louisette we were amazing – with a few exceptions (holidays/while I was babysitting other kids) she genuinely didn’t watch TV until she was 18 months old. . . at which point she began watching about three hours a day (90% Playschool, because Mummy ain’t watching anything too annoying) because she and I were both very sick. Then I was pregnant, and stayed extremely sick for nine months. Then TJ arrived, and he still doesn’t settle well, so Playschool keeps Louisette away from him when he’s getting settled to sleep, AND distracts her from the lack of parental attention.
As a result, TJ (who as a boy induced at 38 weeks from a gestational diabetes pregnancy is WAY more at risk of ADD than Louisette ever was) gets loads of TV every day.
Sadly, until I’m healthier and/or TJ sleeps better and/or the kids play together better and/or until Louisette is less anxious. . . the TV is happening. It’s already clear that TJ loves TV -it’s a great way to keep him calm when he’s tired but not yet actually ready for sleep.
Sadly I don’t have a hope of giving up on TV anytime soon, and I’m not even making tentative plans for how to limit it in future (although that will definitely happen before the kids leave home). The best I can do is treat each day as a new day – if there’s little or no TV, great! – and be self-aware enough to realise that sometimes initiating a “good” activity with the kids will just push me too far and end up backfiring. Better a whole lot of TV than a screaming Mum.
And the toilet training *sigh*
Although technically we are still well inside average ability for her age, we spent over two months last Summer working SO hard with Louisette – who mastered the basics before we even officially began (she would often correctly announce both poos and wees in a timely manner, and do everything herself). Ultimately I was too sick from the pregnancy – she was already regressing in some minor ways – and she had several bouts of gastro in a row that didn’t help. After the first two weeks she was doing extremely well. . . and then something clicked and it all fell apart.
We could have done things differently – used pull-ups instead of undies so the process was more gentle; used a potty in the living room so she didn’t feel like going to the toilet meant missing out on the action – but I didn’t want to go through two distinct stages. We’ll see how things go this Summer. CJ already has leave prepped (again), and we’ve talked a lot about it with Louisette, who is largely positive. She’s started putting off bedtime by going to do a wee on the toilet, which is frustrating (she’s taking an hour to settle at night currently, which sometimes means CJ and I only get half an hour “off” in the evening before I go to bed) but is brilliant for both practising her toileting skills and rebuilding positive associations with the experience. When we have a good chunk of time at home, I’ll sometimes let Louisette wear undies for an hour or so (generally with a wee first, and then a wee at the end – she and I both wee insanely often).
Packing away toys
I don’t have the physical strength to consistently get down and pack up with her (a necessary thing at least some of the time – if only so it LOOKS like she tidied up), so it’s not happening. I might institute a tiny bit of regular packing up at some point – five toys away before Playschool for example – but not yet. This might be another thing I do with both kids at once – for example, at some point each day (maybe before lunch – bedtime seems like a good idea, but it really isn’t!) have Louisette pick up 5 toys and TJ pick up 1. Again, not until TJ has some more capability.
I feel fairly okay about this – though wistful for an easier future. Louisette rarely has major tantrums (and when she does, she doesn’t expect to actually get her way – she’s just not able to regulate her own emotions). She’s cheeky and troublesome in a lot of areas, and is sometimes just ridiculous about everything (“Do you want an icecream?” “No!” *screams of rage*) but she’s usually considerate of others, patient for her age, and reasonably good at sharing. And I think at two years of age you want exactly two things: 1. Not causing too much danger (eg falling) to themselves. 2. Not causing too much danger (eg hitting/snatching) to others. As her primary carer, I’ve been sick or largely unavailable for the last year and a half – half her life – and she deserves a bit of slack, especially at her age. Overall I think she’s doing fine – but I keep a sharp eye on her when she’s interacting with other kids, especially those who are younger, smaller, or who have a personality that’s likely to cause friction.
So that’s all the stuff that I’d improve if I was a slightly different person.
Here’s proof that Louisette can still come up with new facial expressions, even after all this time:
I’m scared of the most physically hazardous part of TJ’s life – from about 6 to 18 months if he’s like his sister. Crawling off things, falling off things, having the mental skills to zero in on anything forbidden with remarkable persistence, eating EVERYTHING (Louisette ate, among other things, gravel. Repeatedly), breaking everything, snatching everything, spilling everything. In the terrible twos you get tantrums and emotional problems. . . but I guess I’m better at emotional than physical stuff (which is a big part of why I’m not truly a baby person, much as I look like it at the moment). And I’m scared of the beginning of food – the messiness and complexity in that transition stage (which hasn’t truly ended with Lousiette – she eats 95% of what we eat, with 90% independence and usually causes a wipe-down mess rather than wipe-down and mop-up mess every darn time).
We’ll start feeding TJ solids (not that they’ll be particularly solid for a good long while) next weekend. Expect some messy photos in this space soon. . .
I’m dreading the constant mopping but looking forward to (hopefully) being able to have him in a high chair rather than a lap at meals. Fingers crossed it goes well.