I aten’t dead. A post in part about Asshat and the Ableists.

Asshat and the Ableists helped put me in hospital: photo of Nalini Haynes in a hospital bed with Silkie keeping me companyTrigger warning: mental health and suicide ideation

Discworld fans know Granny Weatherwax’s hitchhiking pastime and her “I aten’t dead” sign. Granny used the sign because she looked like she might be dead while hitchhiking in the minds of living creatures. My lack of activity on DMZ in recent months could have led people to a similar conclusion. Despite Asshat and the Ableists I’m not dead yet.

In recent years I’ve pondered scheduling a “If you’re reading this I’m dead” post because I have a short life expectancy and unusual health issues. However, that kind of thing always seems to get out prematurely and can be amazingly embarrassing. So I haven’t done that.

A major struggle

During the last 15 months life has been a major struggle and in the last 2 months I’ve been in and out of hospital. Which is why Dark Matter Zine has been so neglected of late. Right up until the day I posted TWO podcasts, interviews with the awesome Menna Van Praag and AViVA, both delayed due to medical and computer issues. Because if it’s not one thing it’s A WHOLE PILE of things. So this post is a bit late because it would have been better if posted PRIOR to the poddys, lol, but here’s an update anyway.

This story begins in March 2021, when some people decided to instigate and propagate a massive internet pile on because I’d previously given them good publicity. The problem? They say I failed to meet their standards. I would say they had books about to launch so decided to generate publicity by instigating an internet pile on to me, a disabled woman who has a lifetime of study and activism demonstrating a desire to support minorities. I’m not perfect, no one is, but I try damned hard to support minorities as I have demonstrated over the years.

And they wanted me to disappear and to be silent. They and people whose comments they posted SAID SO.

I seriously wonder if they consciously wanted me to suicide.

These days I refer to one of said people only as the Diva and another as the Bigot.

Bigot because years ago on a panel he and the only other man on the panel had a “bro chat” while cockblocking three women panelists, actively preventing us from contributing to the discussion. But sure, they’re feminists or feminist allies or whatevs.

Simultaneously

At the same time that the internet pile on began (it lasted for over a month), the executive committee for my housing estate and the strata manager started a campaign to discriminate against me. A Human Rights Commission mediator told me repeatedly that I had to move out of my own home because Asshat and the Ableists were going to escalate the bullying and harassment until they forced me out, one way or another.

So I had very little support and two massive powerful groups of people, one online who seem to me to be a “left-wing” version of Kiwi Farms, and one in the “real world”, trying to destroy me and get rid of me, trying to erase my very existence.

I knew that if I moved house, I’d only face the same problems again and again because Canberra is THE MOST BIGOTED AND ABUSIVE CITY IN WHICH I’VE EVER LIVED. (The University of Canberra literally told police to jail me for complaining about an assault and discrimination. How do I know? THE POLICE SAID SO WHILE REFUSING TO TALK TO MY LAWYERS AND REFUSING TO ALLOW MY LAWYERS TO COME WITH ME TO THE POLICE STATION.)

University of Canberra: the gift that keeps on giving

And that is after a very senior former university staff member told me in email that he would expel me and would punish me if I persisted in complaining about the assault. And if I continued talking about the other discrimination and abuses university staff were heaping upon me. Because silencing victims is his modus operandi. Here’s an article about how a serial rapist was on staff until jailed the year before the professor assaulted me in the refectory on multiple CCTV cameras with heaps of witnesses, but which footage UC admitted to destroying AFTER she admitted to the assault in email. Strangely the internal investigation only asked the perp and her accomplice and none of the witnesses about the assault. The new staff are as bad as the old staff, they’ve received court transcripts showing the magistrate’s finding of assault and her finding of failure on the part of the university regarding procedure and duty of care, but stand by their expulsion and exclusion of me. Don’t believe their “we’re better than the last lot” spin! Also FML. I can’t get a break.)

Two groups. One victim.

In the face of this pincer movement, I started literally planning my suicide. I had NOTHING left, only my husband who would suffer if I stayed alive because they would, by default, force him to move too.

So my GP put me on duloxetine, an SNRI to help me cope. The ‘s’ stands for ‘serotonin’. That’s important. It could have killed me. Thanks Diva and Bigot. TBH I think you should pay half my hospital bills. It’s only fair. Why should taxpayers cover the cost?

SFWA heals

SFWA contacted me, privately, by email to follow up on the internet pile on. They took my evidence, including the original podcast recording, the replacement after I took the complaining author out of the podcast, and listened to my side of the story. They also gave me screenshots of public tweets that I couldn’t access because the Diva blocked me while complaining that I’d given them an (in hindsight, undeserved) 5 star review and featured them a podcast where I introduced them as an “own voices” author not realizing that they were claiming that status only to sell books but didn’t want that bit said aloud where their family and employer might notice.

I have previously re-recorded podcast introductions and would have done so for that podcast. However, the Diva was upset and angry that I’d “outed” them so, to remove ALL evidence of their own voices claim, I had to remove THEIR contribution to the podcast where they spoke on behalf of the entire queer community. If you’re not “out” or if you’re not part of a community, you DO NOT speak on behalf of that community. That is my position and I’m sticking to it.

Trumpites and TERFs: not just RWNJs

Some people who, like Trump supporters, remained steadfast in their support of the Diva and the Bigot, and combed my website for every time that my use of language did not meet their exacting standards. I removed more reviews.

Apparently a person with albinism is not permitted to critique a book with appalling use of the “albino trope”. Because apparently people with albinism don’t count as a vulnerable minority.

Who knew?

Let’s all revile the “albinos” because TERF-equivalents are on the move. Every single person who fought to silence me is, in my opinion, a TERF-equivalent but for disabled people or for certain TYPES of disabled people.

It’s complicated

How does this relate to my recent hospitalizations and disappearance from DMZ? I’ll get there!

2022 is a dumpster fire AND bloody brilliant

This year SFWA’s Nebulas people contacted me and invited me to express interest in speaking. I did. And they included me in their disability panel, as speaker and moderator. I struggled with anxiety prior but I did the thing and it rocked.

To be honest, these panels are never sufficient in length so it ended too soon, but I loved my fellow panelists and learnt a lot about disability representations in spec fic. I haven’t even started compiling THAT TBR list but it’ll be awesome. Essential reading, in my opinion, and very exciting.

You know what the anti-vaxxers say…

You know how anti-vaxxers spread all these lies and half-truths about vaccines? Yeah…

I am NOT an anti-vaxxer. I’m a mask-wearing 4x vaccinated “OMG I DON’T WANT TO DIE OF COVID” person. Context is queen. Keep that in mind while you read the next bit.

I had my first jab in July 2021 and had a very mild reaction, mostly itchiness. I didn’t even bother to follow up with it after a doctor prescribed anti-histamines, and didn’t mention it with jab 2.

Jab 2 presaged bleeding issues: increased bruising, bleeding noses, etc. Nothing bad, didn’t bother seeing a doctor, but I mentioned it going in to jab 3.

Jab 3 was 2 days after the love of my life (apart from my husband) arrived: Silkie, my seeing eye dog. I had to leave her at home alone while hubby & I got our jabs because Silkie and I hadn’t even started training proper. We were housebound unless SEDA (Seeing Eye Dog Australia) trainers were with us because we were about to get our training wheels. (Paws?)

Jab 3 preceded more bleeding. I was stressed, still trying to deal with the awful executive committee and strata manager’s behaviors. Alone (sans jab) stress causes extra bleeding. I have Hermansky Pudlak Syndrome (HPS), a subset, a type, of albinism. Basically my blood platelets are screwy, it causes bleeding issues, and I bleed more when stressed or unwell. So I had Asshat (executive committee chair) and the Ableists coming after me.

They even published in legal documents that I am not allowed to use the front door of the waste collection sheds because I am disabled. Everyone else is allowed to use that door, they even used levies – MY levies – to pay for straps to be attached to those doors so short people can use and close those doors. But, because I’m disabled, they said I had to use the rear path that is wonky and raised above the garden bed without a handrail to reach a narrow swinging door accessing a confined space. Can I get a “HELL NO” from all the vulnerable minorities who are literally attacked and assaulted by others?

So, after jab number 3, I had the stress of Silkie and the training, and Asshat and the Ableists coming after me. So of course I bled MORE. More blood, more orifices, more bruising. It didn’t help that, as part of my training, I had to walk into objects so Silkie and I could learn to work as a team NOT to walk into objects. I was ok with that – ANYTHING that was needed, but it was hard.

Jab number 4.

So, before jab number 4, I saw 2 different GPs on different days. One was for the flu shot where we discussed Jab Number Five, and one was for jab 5. We discussed the bleeding. We agreed – no malpractice here – we AGREED that covid is a clear and present danger. And that the jab was less risky than covid.

So I had the jab.

You can see where this is going.

I had a specific traumatic day exactly two weeks after jab 4 thanks to – you guessed it – Asshat and the Ableists. As soon as *that* event was over, the bleeding started IN EARNEST. My nose started bleeding and I don’t think it stopped until about the time I went to hospital – or once they put me on the IV. It wasn’t bleeding much, it was mostly like a constantly runny nose for a cold, but the liquid was warm and red.

Then on the Sunday I was in excruciating pain and the toilet bowl was full of blood after urinating.

If it was just a teeny bit pink I wouldn’t have been able to tell. We’re talking FULL ON RED. A nurse described it as “The color of a nice shiraz”.

So hubby took me to Emergency were I sat with my red urine sample for 6 hours before seeing a doctor. Triage screwed up big time. When the ED nurses and doctor realized, Comments Were Made.

I explained to all the staff about Hermansky Pudlak Syndrome.

They hadn’t heard of it.

The doctor contacted a urologist and hematologist. THEY hadn’t heard of it before either. However, GOOGLE IS A THING. So they used their medical databases and gave me – along with lots of wonderful painkilling drugs – desmopressin via IV. More on that later.

Silkie and I stayed in hospital for 3 days. I’ll google about Silkie and the Staff (the name of my new band) in DMZ’s Furbaby Diaries later.

Anyone who follows me on Instagram will have already seen the pics and read at least some of that story.

In my opinion, everyone going into hospital needs their own doggo. In fact, another patient in Emergency walked into my bay and demanded to know “Did that come with the bed? I WANT ONE!”

Post-Emergency

The desmopressin did its thing, the bleeding slowed then, after discharge, it stopped. As far as I’m aware, I’m not bleeding like that any more.

But the pain!

The pain has been ongoing. I started walking again, gradually increasing the distance, very slowly.

Hematologist

2 days before the cystoscopy I had an appointment with a hematologist who knows about Hermansky Pudlak Syndrome. He’s in Sydney, the capitol city of New South Wales but I was prepared to travel because RARE AS HEN’S TEETH. Anyhoo, I didn’t have to go there, we talked over the phone instead. Yay for covid: sometimes health services are more accessible now.

And I learnt a few things.

Duloxetine is a BANNED SUBSTANCE for me. Anything that messes with serotonin is EVIL and works with the Hermansky Pudlak Syndrome to, well, to try to kill me.

Thanks Diva, Bigot, Asshat and the Ableists. You’re awesome. NOT.

In fact it is SO bad for me that the hematologist told me to stop taking it IMMEDIATELY before the cystoscopy. This is a drug that you do NOT want to go cold turkey from. But, sure, I didn’t want to bleed again so I went cold turkey.

The hematologist gave instructions for the hospital to give me desmopressin via IV an hour before the procedure. He also said to keep tranexamic acid in the house all the time and take it as needed when bleeding gets bad. Tranexamic acid is a magical substance that took a massive bruise caused by a cannula, a bruise so bad it’d last for well over a month in normal circumstances, and healed it within 2 weeks of the cystoscopy.

If you have bleeding issues, especially if you have heavy menstruation, talk to your doctor about tranexamic acid. It might not be for everyone but OMG it’s bloody brilliant IMO. And if I’d been given the choice between tranexamic acid every month vs a hysterectomy and I guarantee you I would have opted OUT of the surgery.

Cystoscopy

THEN I had a cystoscopy (camera into the bladder to check for anomalies). Hello new and worse pain.

Days before the cystoscopy on 6 August I walked to Brew Bar for a coffee THEN HOME AGAIN. Today, 29 August, I managed that distance for the first time. Since then the pain has been worse and I’m exhausted but hey that’s a good milestone. Right?

The registrar who did the cystoscopy refused desmopressin although he had the email from the hematologist requesting it.

“But our timetable” ranted a staffer.

The registrar told staff to give me to have antibiotics so they’re “on board for the procedure” because of nasties in recent tests.

“But our timetable” ranted a staffer.

My GP requested that they give me painkillers/sedatives/whatever BEFORE the procedure because, get this, I had a blood blister caused by inserting a catheter when I was in Emergency.

“But our timetable!” ranted that staffer.

The anesthetist ignored her and gave me something anyway. I was literally starting to sit up to walk out of the pre-theatre room after that last one but she was good, at least.

Apparently at Calvary Public Hospital you can get a public procedure super-fast if you’ve had the bleeding I’ve had.

But they’re ok with what I consider to be medical negligence and they’re happy to risk putting you back into hospital to recover from day surgery. Grr.

Note: I have gone through channels to lodge a formal complaint to improve care for the next person. And if I’m not satisfied by the outcome, I’ll lodge a complaint external to the public hospital system too.

Side note

Funny thing: we got to the anesthetic bay and staff were like “YOUR DOG CAN’T COME IN HERE!”

I said “I know” and hubby took her to the café to wait for me to be in recovery.

As soon as Silkie arrived in Recovery, she jumped up onto my bed, to the surprise of staff.

Silkie was like “My human, my bed”.

Mind you, she wasn’t like that before our 3 day stay in hospital. More on that in the furbaby diaries.

Post-cystoscopy

The cystoscopy caused A LOT of pain. We (various doctors and I) think it’s my history of endometriosis located in/around a nerve cluster plus doctors inflating my bladder during the cystoscopy that then pressed on the nerves and endo.

My GP and physio are supervising my recovery program.

Also I didn’t go back on the duloxetine. It was too hard to get an appointment with the GP quickly so I just figured there’s no point going on it only to go back off it again.

Bad move.

That was a REALLY BAD DECISION.

Do as I say, not as I do.

If you’re in that position, get thee to a doctor stat! And go off that shit SLOOOOOOOWLY.

I’m hoping my withdrawals will be over soon. It’s not as bad as it was, which was horrendous. Thanks to Diva, Bigot, Asshat and the Ableists. They’re my “favorite” people. They seriously could have killed me, one way or another.

And I’m convinced they would have counted that a victory because they would have silenced me permanently. Just. Like. KiwiFarms. Toxic shit isn’t just the purview of right wing scum-sucking basement dwellers. It’s also the purview of people who consider themselves “nice” and “respectable”. Like J K Rowling.

Today

Today, 28 August 2022, I’m sitting in Brew Bar. I walked here, and not the shortest possible way either, so I’ve walked about 3km. Sitting here writing this is causing the pain to pick up so I’m looking forward to my car trip home again.

But this is an achievement. And it’s lovely to be out in my “territory” again, and seeing some of my favorite people (the crucial barista and other lovely staff, not to mention Silkie’s admirers: absolute strangers who say she’s fabulous and gorgeous).

Silkie is looking forward to a ride on the escalator and travellator before we go home.

Since the Nebulas

I’ve been rather distracted, struggling, since the Nebulas but I’ve noticed more people, new people, getting in touch and asking for interviews. I have a pile of books that arrived recently, and I am excited about reading EVERY SINGLE ONE OF THEM.

OMG such goodness.

I’m still struggling to concentrate but with this enticement I figure I’ll forge new habits, new plans for each day. Read a bit, having a break, rinse, repeat.

Used to be that I thought half an hour to read wasn’t *really* worth while starting to read (unless I was bored while waiting) but now I really need a break after half an hour or an hour. This is only partly because of recent medical events; it’s more due to eyesight deterioration and increased tiredness over years. But I can start again after a bit of a break. So I’m building new habits, or working on starting at least. Change tracks, get out of that rut that has become so well-worn that I can’t see the fields and trees on either side.

All in all, things are getting better. It’s been a hard year, in many many ways – my grandma who was like a mother to me died in June – but it’s also been a year of rebuilding and rebirth.

Special thanks to SFWA people who heard my story and decided to include me in their community. That one event may seem such a small thing but I firmly believe SFWA’s Nebulas turned around a lot for me. OMG even right now, while re-reading this during the editing and pre-posting phase, thinking of what SFWA and the Nebulas inclusion has done for me brings tears to my eyes. This means SO MUCH.

And OMG so inspiring. I plan to listen to that panel to list all the fabulous books with good representation of disability. Any suggestions for that particular TBR pile, please comment here.

Last thoughts

And in case you’re wondering: the official medical line is the Pfizer jab did not cause or contribute to the bleeding despite the consistent escalating pattern of bleeding post-jab. BUT my GP says “No more Pfizer, Novavax next time”. I’ll be there for jab #5 when the time comes. I had pneumonia about 10 years ago; no way do I want covid! I won’t be on duloxetine next time and hopefully I can schedule the jab well away from other stressful events.

Likewise, I hope you stay safe too. And have fun.