I’ve been reading a lot of post-death articles/posts about Jason Arday’s harassment by the British mainstream media and all the people who decided they had something to say about it on social media. It is really disgusting how immense the campaign that led to his death was. Especially considering it was started by an openly racist white man, and yet the media never stopped to think about the larger white supremacist goal of this campaign against Jason. Or they did think about it and decided that was a worthy project to sign their names to and put in all their papers and shit. I know mainstream media, especially in Britain, is racist anyway. I sent in some complaints so hopefully that adds pressure to the media being accountable for this witch hunt.

It did also remind me a lot about when Jas Morgan posted slander and lies about me on social media, and then made a bunch of Tiktoks also (I’m not really involved in Tiktok, although I did laugh at a woman doing the “Knotty pine!” bit from AHS Coven this morning) slandering me and accusing me of all kinds of things I didn’t do. They also recruited many people in the 2 Spirit/Indigiqueer community to support these lies, including many well known Indigiqueer writers and artists. It was a whole nightmare and I know some people worried I would commit suicide over it. I didn’t, obviously, I’m still writing here today. But that doesn’t mean I emerged unscathed. I lost a lot of my community because I didn’t want to allow people who would support that kind of thing to have access to me. This included one long time ex lover who also supported the posts. I also was getting a lot of support, but it was quiet support. It was people sending me messages being so sympathetic. But people weren’t vocally and publicly supporting me. Only one person reposted my writing here about those allegations. I felt mainly alone in my fight. And I think despite getting so much silent support, because it was silent there wasn’t push back publicly by others on the narrative Jas Morgan was painting. And so I think people just assumed I was denying being abusive because anyone would deny being abusive, and that I wasn’t a valued member of the community anymore anyway. It felt that way. Being left alone to struggle and survive a slander campaign is very difficult.

It is very hard to fight slander alone. It is very devastating to see a community I spent almost my whole life in turn it’s back on me, despite the fact I literally gave us a name thousands of people use for their identity. I can imagine Jason Arday also felt like he was abandoned to the wolves. His case is even worse because it went into mainstream media, it fed people who wanted clicks, it sold papers, it invited everyone to dissect him and slam every aspect of his life publicly. And like me he was also disabled. And being neurodivergent and facing something like that is devastating.

I don’t know how I survived. In some ways maybe I didn’t. I did lose a lot of financial support since then. I have trouble getting grants. One person who doesn’t like me can give me low scores and tank my applications, even if the other people on the jury support me. I am sure there are still people in the 2S/Indigiqueer community who fully support Jas Morgan and all their slander campaigns against all the people they feel wronged or slighted by. My career is not where it should be anymore. I have amazing ideas but very little resources to complete them. I keep getting no’s on grant applications. I feel like if even some of the people who privately supported me in messages had actually spoken out publicly in support of me, maybe things wouldn’t have worked out the way they did. I felt like I fought it alone, despite people telling me (privately) that they supported me.

If you see someone being piled on, if you see someone (especially someone disabled or otherwise marginalized) being slandered, say something. And not something gossipy about why they are a bad person and deserve it. Say this shit isn’t okay. This shit is lethal. This shit gets people killed and destroyed. Especially in small communities like the 2S community or the art community. I was failed first by having a bad boss who decided to slander me, and then further failed by a community that only softly and quietly supported me. Support someone loudly. It does save lives.

I talked to the doctor who asked for my MRI and he was really downplaying it, I was thinking oh fuck does he think my life is normal because I can walk and talk? BUT! He referred me to the neurosurgeon. I looked her up and she has really good reviews, I read all of them and she’s in the top three neurosurgeons in Toronto. I have no idea when my first appointment will be. Hopefully sooner than March when I’m supposed to see the neurologist. Anyway it was some good news which I definitely needed because I kind of had a downward despair spiral yesterday.

It’s just very difficult emotionally to not get supported anymore in the creative industry I spent my whole life in training for. So that was most of the spiral. Also reading about how Lilly Wachowski can’t even get funded because her project is trans. She had to do a table read just to get the story out there.

That’s why I’m writing books. Although I did commit myself to some film projects that I have to finish somehow. But it does seem really dire. I was telling my therapist it feels like the conservatives won because no one is funding trans projects anymore. And she said no victory is final, like for either side, but also it might go back to being more open and accepting in the future.

It’s crazy because so much of this culture war is being waged by bots from foreign countries, influencing people and making them think the majority of real living breathing humans think one way, when really it’s the other way. And some people go along with whatever they think is popular, so the bots influence IS working on them. And Trump lost that election, I’m sorry but the voting machines were rigged, the majority of Americans don’t like him or his party at all. So going along with him just because he has power now will hopefully bite these cowardly media executives in the ass in the future.

Anyway I can’t fix that right now, I’m still struggling to find employment and money. I did think about doing sex work but I think I’m not interested in having sex with whoever. I like hookups, but that’s different. I don’t think I want my Grindr account to be some business thing I have to do. Terrible! I would rather have gay sex as a delightful thing, not yet another job. And I would only want to have sex with handsome men and then they’re too cute why would I ask them for money? Ha ha also I am hooking up with two people I really like right now, so I don’t have time to chase money on Grindr.

Anyway yeah, besides doing a lot of writing right now, I am also trying to figure out how to make a living in a world that doesn’t want my stories. So it’s hard. And definitely a reason to despair, but I have to see my life through in case it improves after I get my shunt. I’m wondering if I should go back to school to train in another career. It’s very frustrating right now. That’s all I keep writing in my diary “I am so frustrated.” I don’t know how to be less frustrated and more optimistic. But hopefully I can get my brain surgery sooner and figure out life after that.

I finished my last words of my novel last night with my friend Shaawan at a knitting/fibre arts hang out at a pizzaria. It was super fun. I finished at 50,022 words. Not a long novel, but it’s the bare bones stripped down version. I am putting it away until September so I can get some space from it and think about it further. I rushed through all the plot points, but I know there are parts of the novel I want to give more space to so that the emotional resonance of it can hit. Also yesterday I found an error based on the world it’s in and had to delete and revise a small section. It’s got a big long part in a psych ward, and I realized one of the objects in the ward wouldn’t exist within the rules. Anyway I fixed that. But having trouble thinking of what to substitute.

The funny thing is the one part that actually made me a sobbing mess was more about love between two men and realizing I hadn’t had that experience yet. It’s not that I don’t want it, I think I’ve just not been there yet. There is someone I am sweet on right now so maybe it will happen now. But yeah also just writing tenderness between men is a nice practice for me. Kind of like, if I write from that space maybe I can live it out in my life.

It’s weird too because I feel like the love between women thing is a door that is shut to me now since I transitioned and am not living as a woman anymore. I still get invites to women and trans things, but I’m more interested in being around men right now. BUT at the same time I think part of me still is attracted to women and feels romantic feelings towards them. Recently I had a dream about being in love with a woman.

I had a friend who was bisexual and she kept veering from only wanting boyfriends to only wanting girlfriends and she kept breaking up when her attraction would change. So I kind of hope that doesn’t happen with me. I just want to fall in love and stick around with someone (and have hookups maybe outside of that). But I don’t really see a woman agreeing to that type of relationship. A man might. I also kind of think I dated so many women in my life maybe I’m done with that for now.

Anyway I’m learning things about myself and my loving feelings through my writing which is cool.

I’m thinking of trying to write some short stories and getting them published here and there. I don’t know any particular stories I would write yet. I should look at who has calls for submissions. I am basically writing off and on all day every day though, literally. So incorporating short story writing into my regular creative day would fit.

I’m also getting back into scriptwriting. I still have to finish this feature about the trans potash miner, so I’m working on that. I need to go to a potash mine really though. I don’t know who to talk to about arranging a visit. I’m sort of writing in the dark right now, I watched some videos where people tour potash mines. And interviewed someone who worked in a mine. And have a story editor who has been in a potash mine. BUT YEAH ahhh it also isn’t a low budget film and I think that’s kind of where I need to lean right now, low budget stuff. I have an idea for a low budget script that I want to write, so I’m applying for development on that. We’ll see what happens.

I was hoping to go for a walk, but it’s storming outside. Booo! I like thunderstorms though. They always made me happy, my Grandma loved them too.

I’ve spent some time writing today, trying to open up new memories in my characters. I think I need some more memories though. I was using things I really do remember though. I haven’t thought a lot about my childhood, but now when I look back on it I see all these really boy-coded experiences I was excited about. Like learning to ride a bike, and learning to fish and gut a fish. I remember my Grandpa spent a lot of time teaching his grandchildren to fish. It was my boy cousins and I learning. He took me to the backyard and had me cast and reel in the line over and over with a lead weight on the end. And when he taught me how to gut the fish it was all bloody and gory, but delicious at the end obviously.

He never did go hunting so we never learned hunting. But I think maybe shooting something was too much for me. I did learn how to shoot at one point, with a rifle. But I haven’t done it since I was 12, so I’m not joining any hunts now that’s for sure. And I’m a sucker for cute animals so shooting one is probably not going to happen in my life.

I’ve got almost 2500 words left to write to get to 50,000 words in my novel. I’m trying to stretch some parts out. But all of it is down really. The whole arc of the book. I know there’s major flaws in it that need to get worked out, but once I finish tomorrow I’m putting it aside for at least until September. I’m so close to being done! It’s amazing!

I also have to write a script and a grant, so that’s what I am up to this week.

The dogs are fine. I went to the T Boy Beach Day at Hanlans yesterday, but my friends who were maybe going to come couldn’t come. So I was hanging out on my own mainly, it was okay though. I went in the water. Drank some drinks, smoked some weed, had some edibles. Then came home and made some sausages and corn on the cob and yellow zucchini with parmesan and garlic. So it was a good day. I was exhausted. I had some dates on Friday and Saturday which were fun. I’m starting to feel more open to romance than before, so I guess I am hesitantly putting myself out there. The date on Friday was super sweet because we got to know each other better outside of my home. I want more of that, I’m tired of the hookup life. I mean I probably still will have hookups. But I would like some steady partners.

I did some scriptwriting today too, not a TON. But enough that I feel I can follow through on it finally.

I’m really hesitant to write feature scripts again though. I’m just so tired of how long development takes. I have an idea for a low budget script which I might actually be allowed to make, so I’m focusing on a grant for that. Constant search for money.

I’ve been turned down for teaching gigs so I’m still not sure how I am surviving this Fall. I was looking at my income in WAVE and it’s pretty piss poor. I know the teaching earlier this year helped a lot. But now I don’t know. I guess I’ll continue looking for work.

I finally filled out my beneficiaries for my life insurance. So once that is in the mail I will feel a lot less concerned over it. I still don’t have a will. I need to do that so yeah, but I don’t have extra cash for a lawyer right now (and I have an artist estate so the will kits aren’t comprehensive enough). I need to do it so that my money doesn’t just go to Indian Affairs. I would be so annoyed if it did. Sometimes I think about willing my artist royalties to an organization, but knowing organizations as I do and how they can disappear, it’s something I’m reluctant to do.

I got the appointment reminder for my neurology appointment in the mail today. So yeah, that is nice to see and put on my fridge and remember in seven months or whatever. Seven months, that’s a Snow White dwarf every month! Ha ha sorry that’s the only thing I can think of that comes in sevens. Maybe seven brides for seven brothers? I am sure we watched that at some point. 7Up? Either way, I have to survive long enough to get my fluid siphoned out so my brain can operate in a better way again.

For a while I would get that feeling when I woke up like “Wow, I’m not bipolar I have a neurological condition.” But then as time went on, and nothing changed because nothing can (for seven more months!) I just felt like whatever. I’m still on my psych meds. I’m still living with Normal Pressure Hydrocephalus. It’s just hanging on.

I did recognize that my walking is not as even as it used to be. I think I’ll be fine for the next seven months, but I did stop wearing flip flops and now when I go out I’m always in sneakers because they give me more support when I’m walking. Aside from that not much has changed. I did read a book about this condition, but it was written for elderly people with advanced dementia so it repeats A LOT and just frustrated me about as much as when the psych ward sent me to Bipolar School where I sat there bored to tears listening to all the things I already knew about bipolar disorder.

Anyway, guess I should go read. I did my singing class tonight, I’m Still Standing and Wicked Game. I’m having trouble with Wicked Game because I’m not hitting the pitch right. I’m torn on if I should continue singing classes (which I can’t really afford right now) or if I should quit for a while. The thing is it’s been really helping me and I can tell I am doing better. But yeah, the money is an issue. I know where September rent is coming from but not how to pay bills etc. It’s lean times. I have to decide by the 15th if I am going to continue in September. I really like my teacher though. Ahhh. But also I don’t know what my singing goals are. I can do okay at karaoke now. But I’m not doing open mics.

I want to write songs too and at some point I’m going to have to take song writing classes. Maybe next year.

This month I think it’s two years of guitar? Is it? Three? No probably two, because I started singing one year in.

I got my first appointment with a neurologist. It’s not until March. Seven months to wait omfg. I’m glad I have more of a time frame for the first appointment. But I’m thinking there will be a few appointments. It’s a consultation so I don’t think they’ll do the lumbar puncture that day. But hopefully they do it shortly after. If I can get surgery after the first week of April I will manage to finish teaching my Winter term class and recover during the summer. It’s hopeful anyway, that it might not upend my life too much.

And in the meantime I guess I am just working on my stuff.

I did apply for a contract job in video games that I think I would be uniquely qualified for, so I’m hoping I get an interview. I’m logging into caut.ca and LinkedIn every day looking for work. I never look on Indeed because I hear they post a lot of ghost jobs there. I’m hoping one of these days a perfect teaching job will show up on one of the sites and I’ll finally have long term financial security. Being a full time artist was only profitable for me when the US didn’t have a fascist government. Which sucks but it is what it is. I do have a shit ton of skills and knowledge so I’m trying to use that to get a more regular job that isn’t fucking call centres. If I had to do call centres again I would die, it’s so demoralizing and I don’t think I’m as numbed out to my emotions as I was as a youth doing those terrible jobs. I’d rather have to deal with stressed out students than annoyed people at home who answered their phone randomly. UGH.

I’m doing ok otherwise. I’m still using my accommodations I’ve come up with to make up for my shit memory. If I write something down it’s fine or put in my calendar or set an alarm. Sometimes I make what must be the most boring Facebook statuses but really it’s to remind myself I did something or need to do something. But mostly I am ok. Although I was trying to renew my PrEP shot so the nurse could give it to me this morning, but the Shoppers website kept forbidding me from renewing it until two days before my nurse appointment, and then I forgot about it until last night so I called Shoppers to get it filled this morning but they didn’t have it (and I can see why I suppose, considering it costs 1800 dollars) so they had to get it in tomorrow instead. So then I had to call the doctor’s office to change my nurse appointment to tomorrow also. A whole bunch of last minute phone calls so I can keep having the kind of sex I like in a more safe way. So I get it tomorrow now which should be fine but damn I felt bad about forgetting to renew in time. See stuff like that, sands through the hourglass! I figured out how to teach with memory issues already (or for the memory issues I have), I think I’m doing ok, if a student asks me to do something like give them an extension if I don’t write it down I will ask them to email me. It’s really not a big issue at this point. Which is good.

And film shoots are so scheduled, like we work from scripts and shot lists and if there’s an AD on set they are keeping it going and reminding me of things. And if it’s just me and a camera it’s still easy because I make lists and stuff. So there’s not a lot I have issues with in my career. And as an actor I can memorize lines, I’m okay with that. Maybe I wouldn’t be good in a play. But in a film I think I’m fine.

So I’m capable as much as before to work. I’m not getting jobs this fall so far though. Turned down for three teaching gigs so far. It’s too bad. I originally kind of wanted NOT to work this fall in case I got surgery, but I’m not getting surgery until next year anyway. So I’m just going to be scrabbling for money I guess. I’m going to apply for another grant I guess, but I’m so dubious. I am really not the most desired Indigenous filmmaker in Canada right now. Like, the least desired. I even had a solo show that was meant to tour and no one wanted it. So it sucks, I’m so tired of trying to prove myself still at the age of 48. I guess if no one wants it no one wants it. I’m still not wanting to apply for disability though and I don’t know how that would work when I have a job starting in January anyway. Anyway if there is anyone who likes reading me for non-hater reasons, please hire me or give me money so I can keep making art.

The novel I am writing has an ending! I’m adding a few things in and then it should be done on Friday. I’m pretty happy about that. I had a goal to do the first draft this summer, and I’m on track, and maybe I can do the second draft this Fall. I’m not showing anyone this draft because it’s so raw and flawed. But I know I will work out the flaws! I think it’s too easy for them to win, I need to make it more difficult. So yeah, but it is at that stage now that I wrote the last line. Not quite done for now but close!

Happy to announce I should be done my first draft of my novel in six days. Or less if I’m on a roll! My goal is 50,000 words and I should easily reach that by the end of this week. I am going to write every day until it’s done, it’s just so exciting to be near the finish line! It will be my first real novel I’ve written. I’ve written beginnings of novels but never finished, or wrote outlines. But this is going to get to a proper end. It still needs a lot of work, I don’t think anyone will read this first draft except for me. There’s some places I want to linger in more in the second draft. But I’m excited! Plus it has a cis-trans gay romance in it which is super cute and was fun to write. The romance is not the main plot line though, or at least I never really thought of it as the focal point of the whole story. More of “if two dudes spent all their time together they probably would fuck at some point.” BUT there’s way more going on than that.

I am going to put it away after that and focus on a film I’m acting in this month. But then when I come back to Toronto I will be reading through it again and starting the second draft. The second draft I might let a few people read for feedback.

People have been asking me why I’m making it into a book and not a film and there’s a couple reasons. One is that too much happens in it and it wouldn’t fit in a film. But the other part is also just that I haven’t had a lot of financial support in my film work the last few years, and writing a book comes with fewer barriers. So that’s what I’m doing. I do like film and I can see parts of it that would have been amazing represented cinematically. BUT that’s not really something that is available to me right now, for whatever reason. I can do experimental videos until the cows come home, but I can’t pull off a project like this with my phone and no money. So yeah it’s a book. But also I did always want to write a book, so it’s not the worst thing to spend my time doing a project like this. I’m not getting paid for it though, but like, at least I have a little bit of time right now and for now I am housed still.

I’ve been doing some of my writing completely alone and some with friends who are also working on their own projects, and the parallel working really got me invested in finishing. After this I also have to write a script, so I’m sure that will happen too. But I just wrote the final confrontation with the villain and next is the rush to the ending. So I’m excited, I know where it’s going and I know how it will end. So I think the writing is just going to flow now. It’s so exciting! I’ve written feature films but never a novel. So I’m pretty stoked. Also I have had compliments on my writing (except for people who say I write bad grants) so that’s nice.

I’m really tired. I’m so relieved my music lessons are paid for for a little bit still, but I’m still looking for work for the fall and still feeling discouraged. I also haven’t heard back from the neurologist about giving my skull a faucet, I’m really hoping it happens soon because I would like to know a time frame to expect my health to be worked on. Plus I am just getting worse until I get patched up and siphoned out. So yeah.

Which is also why I’m trying to write this stuff out now.

I saw someone made a gofundme for someone who needs a shunt and it made me wonder if I should do that too. I don’t want to if I can help it. I would like to just be paid for what I do so I can carry on and take a little time off to get my shunt. But I don’t know how I will get paid. I’ve been putting in applications but so far only secured one teaching gig and it’s in the Winter semester. BUT maybe I can get my shunt this fall? I still need to get money though, it’s so stressful, and I’m pretty sure I can’t get disability. I have been constantly turned down here. I know my disability is more specific now, but it feels like they didn’t care before why would they care now? I don’t know.

I practiced guitar today and it was super fun. I went for dinner with a friend. I wrote and wrote and wrote. Tomorrow I am going to write too. I’m just trying to keep working on my art/writing stuff and carry on I guess. Until I get an appointment with the hospital. I guess I’m scared my brain will do some fucked up stuff after I get my shunt. Like, maybe I will have a manic episode? Or something that looks like a psychiatric episode. I haven’t gone manic in Toronto, although I have lived on and off with low level depression. Depression doesn’t really bother others though, and mania does. But also I’m worried what about if my depression does finally go away after my shunt and people think I’m manic when I’m really just finally genuinely content with life? I don’t know, my outcome is undecided by the gods. Or maybe it is decided. That voice told me I would be normal in the end, so maybe I really will be fine after.

It’s weird because NPH is progressive, BUT it can be reversed with treatment. It’s like, there’s hope, but only if a surgeon operates on me. Other than that there’s not a lot they can do. And I’ve accepted that I might have to get brain surgery, like I am prepared. But I just don’t know when.

I still don’t have an appointment with the neurologist. My doctor did call to give me my STI results (negative!) and asked if they’d gotten in touch with me yet and I said no, so she said she would keep checking. My therapist appointment last week was very validating. I showed her my screenshots of my MRI scans and told her what they think I have and how it’s been affecting me. And she was astounded like I was, she even said “What the fuck?!” At one point she said “So you were told you have an incurable permanent psychiatric disability, but really you have a treatable neurological condition?” And I was like yeah. I mean it is so awful that they didn’t get it right for so long. The night after I saw her I went to see the Odyssey and on the way home thought about everything and sort of started crying in the street and finally got home and had a big cry. So much grief at the suffering I had to endure while I was misdiagnosed.

I know I have to be optimistic about this because there really is a chance my life can drastically improve. But waiting for the neurologists office to contact me is so nerve wracking. I don’t know how long it will be before I get my first appointment. Or when I will be able to get my shunt. It’s kind of scary.

I remember the intense depression I had to deal with when I was out of the hospital after my last “manic” episode. I couldn’t speak, or very little anyway. Someone told my cousin he got creeped out by me because I would be out with them and not say anything. And it’s just that I was so neurologically damaged at that point that I was literally mute. But I guess since I wasn’t psychotic anymore no one really thought I needed more help. I remember I was in the care home I didn’t want to be in with no privacy at all, no way to have an orgasm by myself because I had a roommate who literally slept in the same room, and I was just thinking to myself that I was climbing out of a valley and going up a mountain and that I had to keep going because I couldn’t see the other side yet. Like metaphorically. But climbing that mountain in my head managed to keep me from committing suicide.

It’s weird, so many times I’ve been suicidal and now if I think about it, no one would have known why I did it. They would have made up all kinds of reasons but no one would have looked at my brain and seen what it was doing. I wouldn’t have even REALLY known why I did it. I think there are other people in my family that have this and all I can think is how grateful I am that none of them have died because of it, except for my Grandma.

When I think about going up that metaphorical mountain back in 2007 to get out of the bleak depression I was in, I realize I’ve gone through a whole mountain range and I’ve never really known what was on the other side of the next mountain. I thought I could see where I was going but now I’m realizing there’s a bigger mountain and the other side is after my brain surgery and I have no idea what life will look like at that point. I don’t know anything about what it will be like.

I have started going to a friend’s studio to do writing. I did it a few days ago and went back today. Got 2651 words of my novel written today. I still want to get this first draft done by the end of the summer. I have 33,353 words written altogether and I am aiming for 50,000. It’s also a skeleton of a story still, I write like a screenwriter but I’m hoping to put some meat on the bones when I do a second draft. It was going pretty quick today but then I got stuck on a plot point so I went home to be with the dogs and write here. I want to get a first draft done before I get surgery if I can help it. If surgery is not for a while then I would like to get a second draft done first. Basically I am feeling like I need to preserve my stories before they can get damaged by what is happening and what will happen to my brain. If I get a grant I’ll edit my climate documentary too. I can see things that would round it out and drastically improve it. If I don’t get a grant I will finish it, but it will be a very humble version of what my initial dream was for it. It’s already been a dream that has diminished as each funder turns me down. But if it really only gets to be a documentary of zoom interviews, then I guess that’s what I was allowed to make in this lifetime.

I have to figure out my money for the fall. I haven’t got any jobs lined up, just one for the winter semester. But that is still months away. I wish we didn’t live in capitalism. I know it’s failing but the death throes are scary shit. I shouldn’t have to think about money, but realistically disability isn’t enough to support me. It would pay for my rent and that’s it. And if I even qualified for disability, they would keep me impoverished more than I already am.

But I have to be optimistic because I have no choice.

One thing that did make me happy is that there are a lot of people with hydrocephalus who use medical marijuana, and to be honest marijuana has really improved my life since I started smoking/eating it again. It calms me down and makes me feel better. It’s good for sleeping. I have insomnia and sometimes wake up in the middle of the night, but if I have an edible I can have a truly restful sleep.

Life is fucked up! I don’t know what else to say about it.

I’m trying not to be alone so much, because I’ve been alone for a long time as kind of a protection thing. Which made sense when I was dealing with lateral violence in the community. But I’m lonely and I have a serious medical condition and I need to be around friends more. So I’ve been going to that friend’s studio and messaging a few friends to hang out. It’s very difficult to be someone who needs help so frequently. Last year the help I needed was mainly monetary because I had no jobs in 2025. This year I had two jobs that got me through half the year. But we’re into the other half of the year and I don’t know how I’m going to afford to live while I’m trying to get a serious surgery done. So it’s frustrating me. I’ve been turned down for residencies and jobs, so I am TRYING it’s just that I can only try so hard. I’m only allowed to get so far!

At the same time I look back on my career and I’m like yeah in your face! I made all that shit with a damaged brain and maybe it didn’t bring me riches or anything, but I like to think it made a difference. Maybe not enough people understood it or something, I don’t know. But I did it despite the disadvantages I physically and socially have. Not in a Jimothy inspiration way, more like, none of you realized how HARD it was for me to do all that and still I did it. Even when I didn’t get funded.

So yeah, I just want to get these projects on my plate done as much as possible and see what happens I guess. Technically, if the shunt goes okay, things will be on the upswing for me.

When I was a kid I remember being in the sweat being doctored for my depression. It was pitch black and there was a rattle in the sweat, and a spirit picked it up and was rattling it and flying it around the circle. But it stopped at me and went around and around my head. The spirits knew what was going on with me and tried to protect me as much as they could. I know it wasn’t my Uncle (who was the medicine man), because he was too far away, and because the spirit knew where my head was and never hit me with the rattle even though they went all around my head.

There’s so many spiritual things that have happened to me in my lifetime that are starting to make sense now. And not in a “This was all fake” way either, more like, “this story was all true.”

I saw my doctor this morning and she looked alarmed at my MRI report but also was glad I had the MRI because it finally answers a question I’ve had in my life for years. I was telling her how long I’ve noticed the symptoms. I first started peeing frequently and urgently when I was 20, so it’s been 28 years with that. And my psych symptoms have been ongoing since I was a kid, culminating in a manic psychotic episode in 2002-2003. I also told her about the few times when I was a kid when I would go partially blind for a few hours. She was writing down all the things I noticed and is sending the MRI report and the symptoms I described to a neurologist who is going to probably do a lumbar puncture as a diagnostic. So I am prepared. I’m not looking forward to the lumbar puncture, I heard they hurt. But hopefully I get decent pain meds.

I’m still honestly so pissed that all these doctors I’ve seen for all these years for my bipolar disorder never thought to look at my brain and order an MRI, which could have explained EVERYTHING that is going on. I’ve also been reading that some people have their psych issues resolve after they get a shunt, and are even able to stop taking psych meds. I still feel like that’s too much to hope for. I’ve been taking psych meds for most of my life. But we didn’t know why this was happening before.

Why don’t more psych patients get MRIs? It seems like a reasonable thing to request for someone having fucking BRAIN ISSUES! Ugh it’s just infuriating. And I mean, the doctors I see here in Toronto are so much better than the doctors in other provinces, because I’ve never got a feeling of medical racism from them. And it makes me wonder if no other doctors were interested in investigating my bipolar disorder because I’m Indigenous and not worth as much as a white patient. Or they just saw the symptoms and that was as far as they were interested in investigating. I don’t know.

I know I’m lucky to be diagnosed with this though because less than 20% of people with it get properly diagnosed.

Why did it take so long for me to get an MRI of my brain? It’s crazy. It should have been one of the first things they looked into after I was diagnosed with a psychiatric illness.

Also, this is reversible! Like, this could be resolved! I might still have some damage by now though. But I did look at other neurology papers about it and saw some scans of before and after shunts, and the brain does expand again.

It’s wild, it’s like my brain is one of those pillows or mattresses in a tight plastic bag and when you cut it open it puffs up. That’s what my brain is doing in all this fluid, being vacuum packed practically.

I think also I have some feelings about how I’ve been treated by people as someone with a psych history. Like I’m a bad person, or like I deserved bad treatment because I have psych issues. Like I’m a disposable person. I don’t think people understand how some people treat psych patients like we belong in the garbage. I know the nazis believed that, but lots of people who wouldn’t consider themselves nazis also think we should be murdered or forever institutionalized. And I know in my family I’ve had some bad treatment for having psych issues. I even lost housing once because someone didn’t want me to come home after having a psychotic episode. That’s when I ended up in the group home. It feels like I’ve been punished for my brain for so long.

And this whole time it’s been fucking hydrocephalus!?!!?! WHAT THE FUCK?!! And someone could have found it 28 years ago with an MRI? Or worse, even 41 years ago when my suicidal ideation started and my random blindness episodes. WHAT THE FUCK?!!

It’s just like, wow. I think my brain has been trying to get help for so long. SO LONG!

And yet at the same time that I’m angry at falling through the cracks medically for so long, I’m also really hopeful that this means this suffering can end. I take meds, but this would resolve so many things beyond the psych symptoms. SO MANY THINGS! It’s like, if I can live another 48 years, maybe I could have one normal-ish lifetime. I know if I get a shunt I’ll have to keep checking in to make sure it’s working. But there’s so many websites on this illness saying I could live a full and fulfilling life after surgery. So I have mixed emotions. I’m angry at what was lost, all those years just suffering with hydrocephalus. And yet I’m happy about the idea that I could live a normal life, something I’ve maybe never known?

I’m also a bit worried about how my personality will change. I’m not worried about not being a man, I feel very sure in my gender. But like, maybe my personality is already different than my normal personality. And then that’s weird, what is my normal personality? I don’t even know anymore. It’s like, that’s a stranger. It’s wild.

BUT ALSO even just regarding the memory issues, I know I could advance a lot in learning music if I had this shunt surgery, because it would help me remember how to play properly and sing and things. It’s just, my brain does work okay. But it could be better! I could be better.

So I got my report back from my MRI and my brain has a condition called Normal Pressure Hydrocephalus. It’s kind of alarming! It explains why I’ve been having more and more memory issues as time goes on. Also I guess it’s supposed to affect my gait, I’ve had some balance issues going down stairs, especially when there’s no hand rails, but aside from that I seem to walk okay. I did notice in Vienna and Buenos Aires when I went to museums with no hand rails I had a lot of anxiety trying to go down the big stairs outside. I also have urinary urgency and frequency, which is how it starts out and eventually goes to urinary incontinence.

The thing that kind of upsets me about it is that when I had my first manic episode, I also had urinary issues which should have alerted doctors that maybe this was going on. BUT NO I did not get an MRI at that time, because I was just some crazy person, not someone who maybe had a physical reason for mood changes. I was also getting memory issues back then but again, never referred for an MRI.

In my second (and last) manic episode I remember I was waiting for my Mom in her car and listening to the song All Good Things (Come to an End) by Nelly Furtado on the radio and at the end of the song this male voice came through that said “The story goes that in the end, you’ll be normal.” And I knew it was an auditory hallucination. I never heard those words on any other recording of that song. And also the way the voice sounded, it sounded like when a witness is being protected and their voice has been altered electronically. But I was always like what does that mean? Normal how? I don’t like the word normal.

But now I’m learning about brain shunts and how NPH is one of the forms of mild dementia that can be reversed and treated. And I honestly just don’t want to get worse. If I don’t get it, my brain will continue to deteriorate and eventually I will have to move to a care home. Something like 85% of people with Normal Pressure Hydrocephalus die within five years if they don’t get treated. And I have shit to do you know, like I still have projects I want to finish. And I’ve also had a lot of barriers to doing Industry work, so I’m needing a longer timeline to get my work supported. And I’m also trans so I’m feeling like I am at the back of the line when it comes to funding.

But also there are risks I suppose. Some people get shunts and just deteriorate and that’s sort of the end. But the chance that things could get BETTER is really what is propelling me forward on this.

I made an appointment with my GP to talk about getting referred to neurology/neurosurgery. I’m just relieved that it’s right there in the report, what I have. And I can see it in the scans also. Like look at these! There’s so much space filled with fluid!

It feels vulnerable showing what my brain looks like right now. I know people treat people with neurological issues shitty. I mean I knew that as a bipolar person when a formerly friendly colleague started calling me a psycho when I brought up unrelated issues in our working relationship. So I am sure some people will treat me like a shitty person with no brain now that I’m showing these.

I read so many neurological papers after I saw my scans, trying to understand them. They could be the reason for my bipolar disorder and ADHD, who knows. And they are definitely the reason my walking is a bit wobbly and I have to pee so much and I’m losing short term memory. But also I read about brain shunts and recovery, and if a shunt works, the brain does expand a bit again. I think there might always be some damage that ended up happening. BUT I’m technically still in the early stage of this illness. I’m at an Evan’s Index of 0.30, and when it’s 0.31 and above it’s like, trouble! So I’m just on the verge of it being in the bad range. But it was definitely still noticeable enough to be diagnosed in the report. Normal Evan’s Index is 0.20-0.25.

So I don’t know. Maybe the story does go that in the end I’ll be normal.

It’s so wild, to think this could have been happening for a long time and just no one bothered to do an MRI. Because I was just a crazy person, not someone who maybe had something that could be reversed.

I know the medication does work for me, and I will probably still have to take it after shunt surgery. But maybe I could take less of it. Maybe I would be less depressed after. It seems like it could go either way, I could do really well after, or just continue to deteriorate. But I know mostly it’s people over 65 who get diagnosed with this, and I’m quite a bit younger. So I think I have a good chance of getting better. And. I want to find out. I don’t want this to get worse and make me leave my home for a care home. Care homes fucking suck, I’ve been in them and they are awful. I don’t want to be in another one if I can help it.

I’m not really getting the emotional support I need around this though which is difficult. My Mom doesn’t really want to talk about it much. And I don’t know how to express how serious it is to people, or how scary it is, or even how relieved I am that issues I have been noticing might have an end date without the end date being MY end date. I see my therapist next week so I am looking forward to that. But yeah, it’s a very strange time in my life. I am continuing to try getting jobs because I don’t know how far away a surgery would be. It might be a year away, they might decide I’m not in very much danger and not super prioritize it. I don’t know. And considering the trouble I am having with one gynaecologist in even getting a scheduled hysterectomy, it might be another medical thing that has gate keeping. I just don’t want them to think I’m doing fine and not do anything about it. Or I don’t know, enrol me in a secret study to watch me deteriorate. It’s scary as hell and I also need a really good neurosurgeon who can do the procedure and not be mean to me. I did find someone who works with the hospital my GP is connected with who has amazing reviews on Rate My MD. One person said he was next to God. And the only bad scores were from people who actually didn’t get in to see him and went somewhere else. So it’s hopeful.

It’s just like, I had a whole crisis around my brain and what it looks like and for a while was like “I guess that’s what I have to work with” but now to find out things could improve??? It’s encouraging. I could have a normal lifespan, and not die within the next five years. I could stay independent. I just need this surgery. I’m hopeful, and also sad I guess. And also feeling frustrated in case the worst happens and I do die young, all the projects I never got to finish because I didn’t get properly funded, all that shit. It’s disturbing. People think people will always be around, but that’s not true. And I’m already 48, I recently saw someone my age who had a heart attack and dropped dead. I know people die at any age. But some of us are delayed in our dreams because people aren’t ready for us, even when we are ready to make these things. Even when it’s the last chance.

Hey! I have been in Saskatoon the last while, so I was too busy to write here. I don’t think I even really wrote in my diary this whole time either. I have seen my Mom a lot which has been nice. I’m staying with a friend and today we watched a hot air balloon seem to land in the city like, blocks away. I don’t know why a hot air balloon would land IN the inner city of Saskatoon, so we are watching the news now to see if they mention it. But Saskatoon doesn’t have a news station that we can find, so I don’t think we’ll get the quirky reason for why it landed so close to us. We didn’t hear people screaming as it came down so I suppose things are fine.

There’s been a lot of tornado activity out here, like multiple tornadoes a day. Saskatoon had a few tornado watch/warnings and when we went out to the lake there were more tornado warnings/watches. Most of the ones I’ve seen photos of online are lil skinny guys. So not SUPER scary. Still, I don’t want to be in a tornado if I can help it. Anyway, the reason there are so many tornadoes is because of climate change. I don’t know if I wrote this here already, but in my researching climate change I learned that Tornado Alley in the US is moving east, and that the tornadoes are more lethal because they happen at night when it’s hard to spot them. So it makes sense that Saskatchewan would get more tornadoes too. We always had them out here, I think it’s the frequency that has increased though.

I got one of my teaching jobs back for next year, which is nice. But I got turned down for this other work thing. I’ve been applying for work for the Fall semester, so we’ll see if anyone hires me, but having one class for Winter term is helpful and takes some anxiety off of me. I did also get a grant application in but I’m extremely dubious about that coming through. And I need to pay for dog and people food and rent so those are my priorities right now. Putting together enough gigs that I can live another day.

People have been sending me jobs in other parts of Canada, but rent is SO expensive everywhere and I’m in a co-op with reasonable housing charges so staying in Toronto with secure housing is more sensible. PLUS I do better in Toronto with other types of work too, we have a ton of film festivals and Industry stuff, there’s a good art scene, multiple universities and colleges, and I am popular on Grindr in Toronto more so than other places.

ALTHOUGH I did go on Grindr a bit in Saskatoon and had a small handful of nice hookups. Nothing ongoing though, just brief moments. But it was fun. So I guess I can’t act like I can’t hookup here too.

Madonna and Grindr tricked me into changing my Grindr app logo and it’s pink and is supposed to look like a rose I suppose, in the shape of the Grindr mask. But it looks like a prolapse. I thought I was deactivating the thing and it turned it on and now there’s no way to change it back.

Stuck with the Madonna Prolapsed Grindr.

ANYWAY! Being in Saskatchewan has been nice. I got to see the graves up at my reserve and help clean them off. My cousin and grandparents have headstones now and they look really good. I liked the chance to be out there with my Mom and Uncle Doug. And then I got to meet my new baby nephew today and he was super cute. I saw my sister too which was nice, she’s sweet. And some cousins.

I’ve been catching up with friends which has also been nice. I think I’ll have squeezed almost everyone in by the time I head back to Toronto this week. I’m sure I missed a couple of people though. And one is out of town so I’m not sure I’ll get a chance to see them when they come back.

What else? Aw not much. Just connecting with my people out here really which is important for me. I also got some saskatoon berries so hopefully I can remember to bring them home with me. I want to make pies. Pies is what is happening! I wish I had a chest freezer though, so I could fill it with berries and meat. That’s what I aspire to! I know I don’t have room where I live though. It’s too bad! I would need to increase my income a lot to move though, to a place with room for a chest freezer.

So anyway I head back to Toronto and my puppers soonish, and then I’m in Toronto until August when I’m back in Regina for a film shoot. I am not the director, only the actor. I am excited to act in someone else’s film for a change. I need to write another grant this fall. Always the grant writing. It’s still very frustrating to have ideas shot down financially. I’m thinking I am probably going to have to finish the climate doc with my own money, or do some kind of crowd funding. I still want to be finished in 2027. That’s my goal, and it’s just not a film I feel I can put away for another year, considering all of this gestures everywhere. I know there’s people saying films take years sometimes, but I don’t think this can wait.

And yet it keeps getting turned down for funding. But I intend to finish it anyway.

I still need to fix my bed. Mr. Muscles never came back to help me!

I rescued my bike from being tossed out on the bike room clean up day, so now I am thinking geez I should really use it. I could sell it too, but I wonder if I could get used to riding around Toronto. It’s kind of big, it’s a cruiser and an e-bike and super sexy looking. I am just terrified of getting doored. I have accidentally doored bicyclists myself which is why I’m feeling like I am cursed to experience this from the bicyclists perspective. Oh man I can just see it happening! Probably immediately ha ha. I don’t know, I also need to remember how to ride a bike. I do know, but last time I was a bit wobbly. And it’s been a while since the last time.

At least I have a helmet.

I’ve been having an existential crisis since seeing MRI scans of my own brain. If you look at it, it’s so clearly a disabled brain! I think most things are there, but there’s a couple of spaces where there shouldn’t be spaces, and gaps that are much wider than the gaps usually are. I got super anxious about it and was reading all these neuroscience papers about brain imaging and Bipolar Disorder 1 and ADHD. And the gaps generally correlate to where there are larger spaces in Bipolar Disorder 1 folks and ADHD folks. So it makes sense. My mom said “but it works really good!” Aw thanks Mom ha ha ha. She is going to bead it. I gave her a few different scans to work with so I’m curious to see what she does. The cool thing about brains is it seems they can compensate for differences really well, like building new neural pathways and so on. So I suppose what I can’t see is all the secret neural pathways that are making up for ways my brain is unusual. And I would like to think there’s some strengths in there I don’t know about. My memory is dog shit though and I’ve known that for a long time which is why I write everything down when I can. Now when my mom gets jerky to me because I don’t remember something, I can say there’s holes in my brain! Leave me alone!