27

I turned 27 yesterday. It felt slightly odd because for a long time it was a birthday I didn’t think i’d see. 

I feel like my old self died this year or it’s being held prisoner by a stupid & mentally slow version of myself. I’m not sure if it’s just my poor hearing but even my voice sounds different. In the disabilities form for work my doctor had to complete when I was still employed, they noted mental slowness as a reason for me being unable to work. The doctor noted that this state is temporary and will improve with time. I don’t mean to be impatient but it’s been 8 months and I feel stupider than I ever have. I used to have faith in this state of confusion being temporary but lately it feels permanent. I guess I should start getting used to it.

I got married at the end of November. It was an incredibly special day surrounded by family. It’s hard because I often feel guilty. Cody is such a bright and adventurous person and i’m in a consistent state of fatigue. Marriage should feel like a partnership and I feel like a burden. I feel like he deserves so much more than what I’m able to offer. 

Half of my face/scalp is still completely numb. After 8 months, I’ve sort of given up the hope that it will go back to normal. It drives me insane. It’s really embarrassing to eat in front of others because I often get the food on my face and I don’t realize it because I can’t feel it. 

Recently i’ve had a ton of issues with insurance. It’s been the biggest headache. I swear they make insurance things difficult to deter people from seeking out coverage. 

From my initial diagnosis, I wanted to be the longest DIPG survivor. The positive in this is that DIPG has a 0% survival rate, so it’s not that far fetched of a goal. 

Recently i’ve been rethinking this goal. If everyday moving forward feels like it has been in the past year, I’m not sure I want them. I don’t know how much longer I can be in this slow, tired ill state. I, of course, want to live a long life, but not like I currently am. I want to live obviously, but what i’m experiencing right now isn’t life. I have to believe that all this suffering is for something. I don’t know what that thing is, but I have to believe that to stay sane

I wish I had something positive to say or add to this post but I really can’t think of anything recently that’s noteworthy

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