CONTEXT
gothy pictorial (taken 2 years ago)
this little entry is inspired by girlie's journal entry on truth.
some of you know this stuff already.
i'm sick of alluding to my poor health here and there, so i'm just going to blurt out the deal. and then i'm gonna shut up about it for a while.
i am severely disabled with a heart/brain/immune disease.
when i'm in a remission it means that i can sit up for long periods as long as my knees are higher than my heart. in these good periods i can also stand for up to an hour at a time. every activity i do (i. e. visiting with friends, driving, thrift shopping) puts me in bed for days, sometimes weeks if i'm unlucky.
when i'm in a relapse, like now, i have to spend all of my time in bed. i feel like i have the flu. if i stand or sit too long i pass out. i can't think, or read more than, like, a magazine article. i'm absolutely unable to work and am on disability.
(what the hell else could have kept me from my scheduled sg photoshoot with albertine this past fall? sshhhh . . .)
even when i'm in a "remission," my brain function (low bloodflow/oxygen flow) is so addled that it's a struggle for me to read a book. i watch lots of tv and movies. i hate tv and movies, but it's literally all i can do aside from scheme and dream and listen to music/radio and meditate.
because my disability is invisible, things are easy because i can "pass" if i need to. things are also difficult for this same reason. i appear perfectly healthy. my lab tests show otherwise, but that's for me to know.
passing as able-bodied is exhausting. this life is exhausting. i've been doing this for 10 years now, growing progressively worse.
that said, this is so not a sympathy plea. i'm not thrilled with the way things are, but i accept them and i'm fine.
it's just that i'm sharing a sketch of my life by keeping a journal/blog (which has been great, as i've given up for-real journaling on paper), and i don't want it to be misleading.
sometimes it's fun to adopt a persona, especially when i'm feeling my best (which is probably 55-ish percent of how strong a normal, healthy person feels), and it's easy to do this even in real life if i'm having a good day. i'm a good liar, a good prankster, and i have a high tolerance for discomfort. sometimes i just wanna have fun, and leave the explanations behind, especially when meeting/hanging out with new people in real life. there are quite a few people out there who i've met once. that's because i used up all my juice with that one night out on the town, and then was homebound for the next month. so many of my friendster testimonials (remember friendster?) are like, "it was so fucking cool to meet you that one time, we should totally hang out," etc.
lately, my "healthy" and "sick" lives have felt more cleaved than ever, and i'm feeling like i've been living a bit of a double life. partially on purpose, and partially by default. i want be more vigillent about fusing those two worlds, boring as it may be to some people, because being two people makes me feel schitzo. i'm not going to worry about boring people - bigger fish to fry and all that.
so if we've made plans and i've had to postpone and cancel and then seem to have shyly wilted away, this is why. i'm still in a bit of denial about the severity of all of this, and i have a tendency to talk around it somewhat. sorry if i didn't give you the whole deal, which is, really, if you want to assure a hang-out with me, it's got to be at my place, preferably very close to a bed or a couch. (and yes, i have a steady boyfriend.)
that's it. this isn't a thorough explanation and i'm not even gonna read through it. just felt a need to drop a little context.
love,
nicole
ps - i actually do LIGHTEN UP. i'm light most of the time. in real life. blame the journal. it just brings it out of me.
gothy pictorial (taken 2 years ago)
this little entry is inspired by girlie's journal entry on truth.
some of you know this stuff already.
i'm sick of alluding to my poor health here and there, so i'm just going to blurt out the deal. and then i'm gonna shut up about it for a while.
i am severely disabled with a heart/brain/immune disease.
when i'm in a remission it means that i can sit up for long periods as long as my knees are higher than my heart. in these good periods i can also stand for up to an hour at a time. every activity i do (i. e. visiting with friends, driving, thrift shopping) puts me in bed for days, sometimes weeks if i'm unlucky.
when i'm in a relapse, like now, i have to spend all of my time in bed. i feel like i have the flu. if i stand or sit too long i pass out. i can't think, or read more than, like, a magazine article. i'm absolutely unable to work and am on disability.
(what the hell else could have kept me from my scheduled sg photoshoot with albertine this past fall? sshhhh . . .)
even when i'm in a "remission," my brain function (low bloodflow/oxygen flow) is so addled that it's a struggle for me to read a book. i watch lots of tv and movies. i hate tv and movies, but it's literally all i can do aside from scheme and dream and listen to music/radio and meditate.
because my disability is invisible, things are easy because i can "pass" if i need to. things are also difficult for this same reason. i appear perfectly healthy. my lab tests show otherwise, but that's for me to know.
passing as able-bodied is exhausting. this life is exhausting. i've been doing this for 10 years now, growing progressively worse.
that said, this is so not a sympathy plea. i'm not thrilled with the way things are, but i accept them and i'm fine.
it's just that i'm sharing a sketch of my life by keeping a journal/blog (which has been great, as i've given up for-real journaling on paper), and i don't want it to be misleading.
sometimes it's fun to adopt a persona, especially when i'm feeling my best (which is probably 55-ish percent of how strong a normal, healthy person feels), and it's easy to do this even in real life if i'm having a good day. i'm a good liar, a good prankster, and i have a high tolerance for discomfort. sometimes i just wanna have fun, and leave the explanations behind, especially when meeting/hanging out with new people in real life. there are quite a few people out there who i've met once. that's because i used up all my juice with that one night out on the town, and then was homebound for the next month. so many of my friendster testimonials (remember friendster?) are like, "it was so fucking cool to meet you that one time, we should totally hang out," etc.
lately, my "healthy" and "sick" lives have felt more cleaved than ever, and i'm feeling like i've been living a bit of a double life. partially on purpose, and partially by default. i want be more vigillent about fusing those two worlds, boring as it may be to some people, because being two people makes me feel schitzo. i'm not going to worry about boring people - bigger fish to fry and all that.
so if we've made plans and i've had to postpone and cancel and then seem to have shyly wilted away, this is why. i'm still in a bit of denial about the severity of all of this, and i have a tendency to talk around it somewhat. sorry if i didn't give you the whole deal, which is, really, if you want to assure a hang-out with me, it's got to be at my place, preferably very close to a bed or a couch. (and yes, i have a steady boyfriend.)
that's it. this isn't a thorough explanation and i'm not even gonna read through it. just felt a need to drop a little context.
love,
nicole
ps - i actually do LIGHTEN UP. i'm light most of the time. in real life. blame the journal. it just brings it out of me.
VIEW 11 of 11 COMMENTS
aspasia:
I think it's your filthy mind. 
miguelitooooo:
shit i din't know the full score -- ummm, well, as always you're a really great writer and just honest and cool and stuff. i don't know what else to say but i already had total internet friend fondness for you and now i feel it even moreso just cause you rule and stuff.