1. what i did/how i feel tonight

     

  2. #started from the bottom now i’m here…
    #started from the bottom and this is probably one of my last times in a medicare covered public health facility unless we see some change in currently developing policies regarding universal healthcare in this country…
    #started from the bottom so that when i was eventually given the bare minimum protection as a humyn being i would be falling all over myself to thank my oppressors…
    #started from the bottom now my disability pension is up for review…

    #started from the bottom now i’m much sicker than i might have been at this age if i had proper public healthcare to begin with….
    #started from the bottom and thanks to the afore mentioned lack of healthcare in my youth i probably won’t ever have the psychological or physical well being to properly contribute to the australian workforce…
    #started with a doctor who understands my case work and now i’m being reviewed by a third party who i have never met who is being paid by a government that has a clear bias against the “entitled” poor…
    #started in america moved sought refuge from america now the place that i live is becoming as bad as america…
    #started from the bottom stayed at the bottom highly likely that i’ll die at the bottom…

     
  3. check out the super optimal placement of my new drip/IV! right on the wrist joint, under the thumb so the tubing can jut like a tree branch out the centre of my palm! i totally won’t bump that on anything!!!! it only mildly hurts everytime i move my hand! :) :) thanks modern doctor! 


     

  4. :( :( :( :(
    going into hospital today
    no escape
    skin like a choke chain
    on the bright side everything is meaningless and at least i’ll die one day
    :( :( :( :(    

     
  5. 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. 

     
  6. 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.

     
  7. 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.

     
  8. 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. 

     
  9. more sadness diary

     
  10. more sadness diary

     
  11. more sadness diary

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

     
  13. 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.

     

  14. 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.

     
  15. 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