i make things and i talk about my illness, cystic fibrosis. if you wanna write me.

Dec 2



this is a video i filmed for my song Almost Living with my friend Ryan. Ryan came to visit while i was an inpatient in hospital and we shot this video, which is supposed to be a first hand insight into my ritual and routine while i am in hospital, over the course of one day. we wanted to organically document my food, my exercise, my treatments and procedures, the dried up pond surrounded by rocks i go to read at, taking my succulent outside for a walk, my drawing equipment, the stairwell i go to sing in and also the church organ that i play at night. all of these things provide me with a centre when i am sick. i have been playing that organ since i was 15, i have been reading by that pond since i was 13 and it means alot to me that i have a high definition film of the spaces in which i have grown so much and overcome so much pain. i feel so privelaged to be able to share it with such clarity, thank you so much Ryan, you don’t what you have done for me.

this song is part of an album i am working on about living with cyctic fibrosis and living in an out of hospital. it’s largely recorded in hospital so it’s gonna be heaps sad, but this is how i understand myself and come to terms with challenges in my life, through singing and making things. i hope that i can properly explain some of it and i hope you like what i have to say.

also please listen to this with headphones. the bass is way better that way. xx 

Almost Living

spitting blood in scented tissues 

cough draw tears

live like i already died at 24 years

ward floors shine like swords in fables

wheel chairs lined up like horses in a stable

the dying walk round here like they been spun in circles

supper time come 


nurse buzzer glows

most nights no sleep 

so i creep 

to the moonlit smoking balconies

rain water on my spectacles, eye lash flutter

thinking about the eyes of my mother 

live and die in almost way 

even friends don’t know what to say

nobody know what to say

HTMLflowers’ new video.

Re-blogging in celebration of my birthday. making this video was a big part of accepting and trying to move forward with my illness and every year i come a little closer to internal harmony through these processes. thanx 2 everyone who wrote me so many nice things, i love you all and i wanna cater 2 u always. xx

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    Have come back to this three nights in a row now
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    heres a cool vid by a really cool guy i found at random, but apparently he knows my friend Jack Goodlet who is also a...
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