as small as a world and as large as alone

3:41am June 8, 2014

dusty-soul:

youneedacat:

whyggdrasil:

I’m not going to pretend that I don’t want to see TFIOS, because I really really do. I want to be excited to see my cancer being represented on screen… But…
A. I don’t want to cry by myself in the theater during the WHOLE THING
B. I don’t want to see people dressed as Hazel for Halloween.

I’m terrified of going with my (legit) oxygen tank/cannula and cane, and having people assume that I either have cancer, or am dressing up, neither of which is accurate.  (I have bronchiectasis and adrenal insufficiency.)  The scrutiny has me afraid to go.

I haven’t seen anyone dressing up when I’ve been in around the mall theater, just people in tFiOS T shirts that say the “Okay? Okay.” on it. So, I really understand where the fear comes, but I really want you to be able to see the movie. If my gender / disableity was represented with the care tFiOS takes (in terms of disablity, I’m still erked by the Anne Frank House) I’d really, really want to see it. And I’d be scared about being a called a faker if people dressed andognously for the fun of seeing the movie, so I do understand where it comes from but like

It’s a book written by a not physically disabled man to a readership which I felt he knew would include physically disabled readers (the book to dedicated to Ester Earl, who died from cancer, if I remember correctly) so that’s something really, really big. Way bigger than I ever thought it would be.

Mostly I was just thinking the whole time how much better it would have been to see with friends since I did cry alone. (My siblings and father sat in a dif part of the theater)

anyway, just I litterally got back from watching it and I’m all emotions so sorry for like…

emotions dumping on your post.

Okay, I’m gonna find a way to go see it then, regardless.  It’s worth it.  The book meant a lot to me.  I know there’s all these ~critiques~ of it and stuff.  But I’ve never been much of a ~critique~ person when it comes to things like that.  I either like something or I don’t, and when I like something, then it doesn’t matter to me if parts of it are ~problematic~ in some way, or… it does matter, but it doesn’t overshadow my entire reading experience, hard to explain.  

And when I read this book, I was sure I was dying, and that made a really lasting impression on me because of that.  That was before we knew I had adrenal insufficiency.  So I just knew I had a mystery illness that kept pulling me to the brink of death and then letting me come back, and that one day I wouldn’t be so lucky.  I got lucky.  But reading a book like that when you know you’re dying, it gives it this whole layer of experience that goes even beyond the shared chronic illness experience, which itself is extremely deep with me and that book.  It meant a lot to me at a very particular time in my life when I wasn’t even letting on to most people how serious things were, because I was afraid of hurting them.  So the book became an outlet, sort of.

…now I’m the one emotions dumping.  So don’t apologize for that.

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