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.”