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.