dwindling weekends...

it's saturday evening, "a prairie home companion" is on the radio. stean is here reading. this is completely opposite of what we should be doing. our total number of weekend days (weekend days only being saturdays and sundays) remaining in philadelphia is four, and our weekday evenings are quickly being spoken for by friends and obligations. somehow, though, rushing to get everything packed and ready feels like too much in this moment. i know i'll be getting things done later in the evening, but now, i just want to be here listening to the radio, with my dog asleep by my side and my boyfriend feeding his comic book addiction by my other side.

yesterday i saw the neuro-opthalmologist, who said my eyes look perfectly normal and he isn't able to offer me any insight into why i'm still having headaches every day. i've got to get a new prescription for my vision, though, and also new contacts, more expenses for which i don't really have money to cover. i've got to do it, though. i have to. i've been wearing my glasses, which are weaker than my contacts, but my contacts are so old and dry that they're murder on my eyeballs, especially in the humid, hot, dirty summer air.

in the visit with dr l, after he put the drops in my eyes that would dilate my pupils, he brought two residents in with him and asked if it was okay if they looked at my eyes. i said it was fine. so as dr. l was going over my history with them, when he got to the point about how i was at first diagnosed with a brain tumor, one of the residents said "wow", kind of in a "hey cool!" sort of way. this, of course, was inappropriate, so i said, with the intent of putting this kid, who was about my age, "yeah, it's been an interesting year." the other resident was more in touch with things, and showed some empathy. i swear, don't they teach bedside manner to these med students in these fancy med schools? whatev. it's cool.

but here's the part i wanted to write about. this morning stean and i went to breakfast and he was telling me about the boyfriend of this girl who i hesitate to refer to as a friend, even though stean would do so (he's much more kind and forgiving than i am) and about a story of him (the boyfriend) when he was in africa for the peace corps. and it made me think that maybe someday, when we're older and retired, that doing some work for the peace corps might be a really good thing to do.

cut to last night, when i was at tattooed mom's with a girl i work with and a friend of hers. this particular colleague of mine demonstrates zero tact and zero attention to what is appropriate or respectful. so she was kind of announcing to her friend about how i had some sort of tumor or something in my brain and how i was partially blind and disabled and stuff. but anyway, her friend, who has albinism, was telling me that he has a friend who has MS yada yada yada and he used the word "degenerative". it wasn't meant in some mean way, it was just said in a matter of fact, one disabled person talking to another sort of way. but, degenerative? ugh. it's such a harsh, ugly word.

so, here i am this morning with stean, he's continuing on his story about the guy in the peace corps, and all i can think of is the word "degenerative" and that word is just swimming around in my head, hovering in front of my eyes and ears, with a weird echo effect. degenerative. and i think of my idea that stean and i join the peace corps when we're retired and i realize that for me it just might not be physically possible. so what do i do? i start crying, in the middle of the 10th street pour house. not sobbing or anything, but definitely tears.

the thing is, blog, i'm very very very much in denial. whenever i try to think about what it means to have this disease or how it could possibly effect my life down the road, it's like my brain freezes up and the world around me gets sucked in really close. i was ready to have a brain tumor--i was up for it and i knew what it would expect of me. with this, there's really no certainty except that there is uncertainty. it's like god is playing on my worst fears.