HTML/flowers/wilting

i make things and i talk about my illness, cystic fibrosis.

sunsetgradient@gmail.com if you wanna write me.

Posts tagged illness

Nov 11
so i have been anonymously combating judgemental and harmful sentiments on the cystic fibrosis confessions tumblr as an act of self care and also to provide a much needed response to these kind of discourses that heaps of “young” CFers go through. this is the kind of thing i used to think and it almost killed me. that said i consider the process of voicing these feelings and engaging in discussion on them essential to growing up with illness. hell sometimes you just don’t realise it’s going to be like this for fucking ever and you feel proud of your resillience and think it will last forever, and some people never go through a period where they feel resilient and some people always say this kind of thing until the day they die, so i mean really it’s not a matter of age, more one of experience. as in experience up to this point, during this point and after this point. but i think it’s important to put a hand up and say “hey, whatever gets you through it unless that thing that gets you through it is criticizing the way others get through it.” feel me?i have also been messaging and following people who comment to refute the posts so i can develop a stronger network of peers with CF who i can trust to not be secret shaming ableist jerks. feels really good to have a sense of trust for a few CFers, i have only had that once and it was horribly abused.lol, illness is very fun/weird/big/real/dark/bright/sexy/robust/boring/painful/destructive/endless/fuck please let it end/ who am i without it? etc. 

so i have been anonymously combating judgemental and harmful sentiments on the cystic fibrosis confessions tumblr as an act of self care and also to provide a much needed response to these kind of discourses that heaps of “young” CFers go through. this is the kind of thing i used to think and it almost killed me. that said i consider the process of voicing these feelings and engaging in discussion on them essential to growing up with illness. hell sometimes you just don’t realise it’s going to be like this for fucking ever and you feel proud of your resillience and think it will last forever, and some people never go through a period where they feel resilient and some people always say this kind of thing until the day they die, so i mean really it’s not a matter of age, more one of experience. as in experience up to this point, during this point and after this point. but i think it’s important to put a hand up and say “hey, whatever gets you through it unless that thing that gets you through it is criticizing the way others get through it.” feel me?

i have also been messaging and following people who comment to refute the posts so i can develop a stronger network of peers with CF who i can trust to not be secret shaming ableist jerks. feels really good to have a sense of trust for a few CFers, i have only had that once and it was horribly abused.

lol, illness is very fun/weird/big/real/dark/bright/sexy/robust/boring/painful/destructive/endless/fuck please let it end/ who am i without it? etc. 


Oct 30
paradoxically i really hate shit like this. despite being unified by our disability we still experience entirely different histories and pursue (for better or worse) different methods of coping.

paradoxically i really hate shit like this. despite being unified by our disability we still experience entirely different histories and pursue (for better or worse) different methods of coping.


GPOY every fucking day.

ppl out there if you have felt like i just gave up on getting to know or totally bailed on our friendship/relationship of any description just know i am constantly afraid for my life and every time i talk to someone i have to struggle myself into focusing for them beyond the constant pain i’m in. i’m also really afraid of letting you love me cause we both know this is gonna end.


Oct 3

so i remembered this e-mail i got a while back. i have already posted about it, roughly two years ago, but it was before i knew how to screencap things (i know, i know, i learn slow). i remembered it the other day after receiving another message of the same spirit. i get these often. i am struck by how eager i am to answer them and how resentful i feel at being tokenized.

on the one hand growing up as we all do it is a relief to be offered space to say something about your frailty and your fear that you are always thinking of - the thing that constantly haunts you. it’s so refreshing to be asked sometimes rather than having to decide if it’s ok to bring it up. even if you are trying to talk about it as little as possible you still have to talk about it so much already you begin to blame your voice, as if the talking is whats killing you. thats how commercialising illness works tho, if you are not properly groomed to turn the guilt inwards you might start blaming the environment that makes no space for you, the society that only comes to you when it is having some existential crisis that it needs waved away by the wise little kid who was born close to death. so you are again being reduced to your illness but it’s the kind of oppourtunity that is such a balm to your guilt, your silence that you just don’t care how insulting it might feel, you so badly want to tell it to someone. it might weigh less if you give it away in little peices like this.

at the same time it fucking sucks to be the ambassador for living life to it’s fullest basically because you have a practice of art, you get up in the mornings and try to  maintain healthy relationships with people “in spite” of your illness, which is how people always put it. because you haven’t just killed yourself already, which is what most people imagine they would do in your shoes. i don’t know, it’s a strange balance and it’s obviously still a really ambiguous thing for me. 

anyways i was just thinking about it and i thought it deserved a re-posting as it originally came to me, name and e-mail address removed as per the agreement of course. 


Oct 2
more sadness diary

more sadness diary


Sep 23
more sadness diary

more sadness diary


Sep 22
more sadness diary

more sadness diary


Sep 21
had a sad morning, did some diary writing and drawings about it.

had a sad morning, did some diary writing and drawings about it.


Jul 3

so i started following a blog of anonymous cystic fibrosis kids’ confessions. this one post really spoke to me & i wrote this really fucked up rant after seeing it & then i realized how much it related to this peice i drew for me & simon’s exhibition in madrid. so i reframed the whole thing & here it is in all of it’s totally sad sadness vibez:cfconfessions:


“I was one of the lucky ones until I started skipping my medications because I wanted to die. Now I’m miserable and in pain and no I’m not dieing, and I want to live more than ever now. But I’m still not half as healthy as I could have been, and it’s entirely my fault. I hate myself more than I hate CF.”
-Anonymous



that’s how i have felt everyday since i got sober. just over a month four days ago. old things that i thought i had escaped come back, like uncontrollably imagining how my death is going to effect the people i love everytime they touch me or smile at me or tell me how happy i make them. or how i feel a draining of hope everytime i agree to a plan that stretches beyond that day, like even the nearest future is impossible to reach. or how even hearing my mother say my name can bring it on. at least when i was getting fucked up i could forget for a while or pretend i wasnt real or that their love for me was false because they never really knew me or that i didn’t actually deserve their love, even though that isnt my choice to make. my therapist showed me how i guard myself from their love & i realized he was right the minute he said it. i said ” i feel so unreal most of the time & so guilty for feeling that way because i know i am real and that heaps of amazing people really do love me” & then he was all like “but do you let yourself feel that love, grant?” & i was all like “… (the silence that germinates inside of a blinding recognition of self)”it’s because it would be the thing to undo my dedication to reality for good, to feel their love. there could be no faith left in this life after that. to hold their love for a moment in all of it’s tireless purity & to understand that i deserve it because they say so & that they will give it to me right up until i stop breathing & that i will take it all away with me like swallowing all the perfect water that ever was rained. swallowing it all on a fucking whim. the whole time, from here till my death, they will go about accepting my distance and the pain that comes with loving me so urgently from so far away & i will do everything i am able to overcome that distance, though i will probably never fully forgive it for what it is or myself for feeling this distance. it’s a coping mechanism that i cant control, but it feels like it’s my fault. to know that ive probably burnt so much of the time i had to do that away on drugs & wanting to die already & that my first instinct that comes along with that is to move further away again to protect them & to protect myself. and this horrible fucking blog facilitating a way for me to tell everyone without looking them in the eyes. all my songs & drawings & poems etc. having the same ultility in my life, a way to say it without being there. a brightly colored cowardice that makes people write me & say i’m brave. it makes people extend even more friendship to me & i fucking even say yes to it. i go to their houses for dinner and make even more friends to ruin. the whole time i’m drinking them in & saying all the realest things i should tell them to beats that never talk back. beats that only sing in support of my horrible breathless voice.how could such a thing have come to exist, this rare & inhumane system of loving & losing? even worse how can it be that it is not just a thing that were done to me alone for my inherent deservingness? how can it be that time is so sociopathic & vast that it could harbor this more than once? how can it have a shared name? if it must go down like this, with all of this loss, then please, let it go down without the love. undo the rule of loving & losing just for once, when the stakes are so abject. let them keep their love & let me finally be lost. please.

so i started following a blog of anonymous cystic fibrosis kids’ confessions. this one post really spoke to me & i wrote this really fucked up rant after seeing it & then i realized how much it related to this peice i drew for me & simon’s exhibition in madrid. so i reframed the whole thing & here it is in all of it’s totally sad sadness vibez:

cfconfessions
:

I was one of the lucky ones until I started skipping my medications because I wanted to die. Now I’m miserable and in pain and no I’m not dieing, and I want to live more than ever now. But I’m still not half as healthy as I could have been, and it’s entirely my fault. I hate myself more than I hate CF.”

-Anonymous

that’s how i have felt everyday since i got sober. just over a month four days ago. old things that i thought i had escaped come back, like uncontrollably imagining how my death is going to effect the people i love everytime they touch me or smile at me or tell me how happy i make them. or how i feel a draining of hope everytime i agree to a plan that stretches beyond that day, like even the nearest future is impossible to reach. or how even hearing my mother say my name can bring it on. at least when i was getting fucked up i could forget for a while or pretend i wasnt real or that their love for me was false because they never really knew me or that i didn’t actually deserve their love, even though that isnt my choice to make. 

my therapist showed me how i guard myself from their love & i realized he was right the minute he said it. i said ” i feel so unreal most of the time & so guilty for feeling that way because i know i am real and that heaps of amazing people really do love me” & then he was all like “but do you let yourself feel that love, grant?” & i was all like “… (the silence that germinates inside of a blinding recognition of self)”

it’s because it would be the thing to undo my dedication to reality for good, to feel their love. there could be no faith left in this life after that. to hold their love for a moment in all of it’s tireless purity & to understand that i deserve it because they say so & that they will give it to me right up until i stop breathing & that i will take it all away with me like swallowing all the perfect water that ever was rained. swallowing it all on a fucking whim. the whole time, from here till my death, they will go about accepting my distance and the pain that comes with loving me so urgently from so far away & i will do everything i am able to overcome that distance, though i will probably never fully forgive it for what it is or myself for feeling this distance. it’s a coping mechanism that i cant control, but it feels like it’s my fault. to know that ive probably burnt so much of the time i had to do that away on drugs & wanting to die already & that my first instinct that comes along with that is to move further away again to protect them & to protect myself. and this horrible fucking blog facilitating a way for me to tell everyone without looking them in the eyes. all my songs & drawings & poems etc. having the same ultility in my life, a way to say it without being there. a brightly colored cowardice that makes people write me & say i’m brave. it makes people extend even more friendship to me & i fucking even say yes to it. i go to their houses for dinner and make even more friends to ruin. the whole time i’m drinking them in & saying all the realest things i should tell them to beats that never talk back. beats that only sing in support of my horrible breathless voice.

how could such a thing have come to exist, this rare & inhumane system of loving & losing? even worse how can it be that it is not just a thing that were done to me alone for my inherent deservingness? how can it be that time is so sociopathic & vast that it could harbor this more than once? how can it have a shared name? 

if it must go down like this, with all of this loss, then please, let it go down without the love. undo the rule of loving & losing just for once, when the stakes are so abject. let them keep their love & let me finally be lost. please.


Jun 19

ATTN all breathers

TW: Illness - Word up & fond rememberings to you if we are friends and you have never made me feel awful for making crass jokes about maybe dying young. Word up and always in my hearts to you if you saw it for the thing it was, a way to cope with my shitty illness. Inexpressible dissapointment to you if you have ever tried to tell me i’m lucky for the few things i am afforded as a compensation for the irreplaceable losses i & my family have endured because of structural ableism. I will be robustly transmitting the same wordless dissapointment to every other “healthy” fool out there who puts this shit on my fellow chronically trill fam as well. thanks for nothing, you breathers, keep your healthrotten insights yourself.


Jun 8

so after my friends carried me around the party on skype they came and knocked on my door at 3.30 am and collapsed in my bed and then i lured them out of bed by making them a teryaki stir fry and we all watched hey arnold and now i am super wired and they all look sleepy and their gonna snuggle down for sleep and i’m gonna stay up writing poetry and watching the sunrise from my frontyard. i can feel the strength of love so clear when i’m clear of chemicals. wanna share that, wanna feel that, wanna keep that. #can’tpartycausei’mbadatdrugs #myfriendsarealwaysthereformeanyway    


my beautiful friends.

so because i’m trying to deal with my substance dependency issues and part of that is saying no to really good parties/birthday parties but all of my beatuiful friends skyped me into a phone and carried me around the party and i danced in my room and made out with cuties through the web cam and showed them my butt and i feel like crying i love them all so much.  


Jun 4

MOM DON’T READ THIS

TW: drugs TW: illness TW: i’m scared

This afternoon i called a rehab facility to take some steps toward long term sobriety or at least re-evaluating and gaining control over my dependence of drug and alcohol in times of duress. the consultant i spoke to reccomended i go into detox for a week long stay. i know that is such a short amount of time, but i feel pretty scared about it, does anyone have experience? insight? help? support? ideas? 

i have been sober for 48 for the first time in months and i wanna stay this way, i’m so strong of heart and precise of hand this way, but i can barely stand how many things i take note of - am effected by - feel drawn to think of - as tho the wind where blades sometimes and the smiles of others where portals into the intimacy of the world, where all breath is shared and the responsibility to be good & worthy is so dire. 

xoxoHTMLflowergirl 


Jun 3
i can feel my breath is labored, a pain in my left lung - i have always been told and so i believe that i am supposed to die young - here in my bed i’m filled with fear that i will never be able to learn to explain myself or make up for myself before i die - i have lived it three years past the last life expectancy i was given, there are five years until i reach the next one (fingers eternally crossed) - here in my bed i feel obligated to make something to justify the costs that my mother/friends/society has paid so that i can live, medicated & trying every day to thwart my genetics - but i am making myself lay here and do almost nothing, cause i never love myself unless i am making myself of use/paying reality back for what i did to it with my coming & that’s all kinds of fucked up these pillows are my flower petals and the scent we shed is a fuck you to every voice that surrounds me, including my own, telling me to be more before it’s too late - maybe i have even less time than most of the people i will meet in my life - maybe i won’t see 26, but i gotta find a way to just be - gotta learn how to understand and believe that i don’t owe ‘em a single petal from my bloom - to speak to myself with the same empathy and support i would anyone else going through a chronic life threatening illness laying here like this is a radical act - look how comfy my revolution looks  i felt scared to let myself do nothing so i asked my friend campbell if it’s ok if i do nothing sometimes - if it’s ok if i am not always trying to pay back “the debt” or plotting strategy to create more time/life somehow - the whole time i was waiting for his reply i thought about how i make all these renderings of fantasy entities and scenarios - like if i birth enough new things the death i was born pregnant with might let me be - like maybe when it’s time i can trade it all my drawings and my singing voice and the way that i never learnt to spell very well or write very neatly but how i have made that work for me and the tattoos ive given and the stories ive told & written & sung and the meals i have cooked my friends and family and my long hair i have grown instead - maybe there will be just enough life in all of these crafts so that i get to keep the time & the body & the ones who love me enough to hold this body in this time - and maybe by then i will have learnt to be comfortable just laying in time being held there with another who shares the same time with me - maybe i will be allowed into time like everyone else, maybe even welcomedin response to wether or not it was ok for me to just BE , campbell said “Yes.”

i can feel my breath is labored, a pain in my left lung - i have always been told and so i believe that i am supposed to die young - here in my bed i’m filled with fear that i will never be able to learn to explain myself or make up for myself before i die - i have lived it three years past the last life expectancy i was given, there are five years until i reach the next one (fingers eternally crossed) - here in my bed i feel obligated to make something to justify the costs that my mother/friends/society has paid so that i can live, medicated & trying every day to thwart my genetics - but i am making myself lay here and do almost nothing, cause i never love myself unless i am making myself of use/paying reality back for what i did to it with my coming & that’s all kinds of fucked up

these pillows are my flower petals and the scent we shed is a fuck you to every voice that surrounds me, including my own, telling me to be more before it’s too late - maybe i have even less time than most of the people i will meet in my life - maybe i won’t see 26, but i gotta find a way to just be - gotta learn how to understand and believe that i don’t owe ‘em a single petal from my bloom - to speak to myself with the same empathy and support i would anyone else going through a chronic life threatening illness

laying here like this is a radical act - look how comfy my revolution looks

i felt scared to let myself do nothing so i asked my friend campbell if it’s ok if i do nothing sometimes - if it’s ok if i am not always trying to pay back “the debt” or plotting strategy to create more time/life somehow - the whole time i was waiting for his reply i thought about how i make all these renderings of fantasy entities and scenarios - like if i birth enough new things the death i was born pregnant with might let me be - like maybe when it’s time i can trade it all my drawings and my singing voice and the way that i never learnt to spell very well or write very neatly but how i have made that work for me and the tattoos ive given and the stories ive told & written & sung and the meals i have cooked my friends and family and my long hair i have grown instead - maybe there will be just enough life in all of these crafts so that i get to keep the time & the body & the ones who love me enough to hold this body in this time - and maybe by then i will have learnt to be comfortable just laying in time being held there with another who shares the same time with me - maybe i will be allowed into time like everyone else, maybe even welcomed

in response to wether or not it was ok for me to just BE , campbell said “Yes.”


May 25

love note 2 self - 2013 til forever

word up to me in terms of how long ive been trying to deal with my degrading mental health on my own. i don’t agree with an internalized logic that dictates that pain must be endured and resolved in silence, paying as much respect to the convenience of others as possible. i think this is partially a mechanism of an ableist society to deepen the sense of isolation and shame for self amongst it’s constituents. with that said, even though i may be doing it for the wrong reasons, i want to affirm that it’s a sign of my strength as a persyn that i have been holding it together for so long, that shows discipline and strength of will. i just had that thought and i wanted to crystlize it in words so that i will feel it & keep it. 

i think i will have to reach out in a different way than i have before to my therapist and mental health care services & there’s strength in seeing that & acting on that too. just hope i keep true to it this time. love to my feelers on the internet going thru relatable struggles. don’t forget about all that strength in your frailty.

from HTMLflowergirl
2 grant
& everybody else
xoxo


 


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