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.