Life In One Room

Am I suppost to write something here? No, not really. It’s more like I have lots of time to do things while lying down, because my illness forces me to lie down all the time, this my options are limited. But writing being one of those options. And when I say writing I mean the kind of writing one does like water. Sometimes called ”automatic”. It’s thinking through writing. Or vice versa. Anyway. When I don’t know what else do to, as is the case many days in a life lived with chronic illness, I write.

I go go
I go go
not
nowhere
no no
no go go
no go go

Snail the house
where it lives
the house is part
of the body just
like me my house
my apartment is
my body my life
i live in a room
of my own my
own illness host
ing every night
and day too it’s
better than what
it should be tonight
due to hizentra that
is immunoglobulin
anyway when one
only is self-isolated
in one for for years
and years the room
really feels like a
body and that’s
all I have to say
about snails right
now how cool they
are because they
can lift their own
house like it’s
nothing

Everything is like a balloon / i have never been to the moon
when everything happens online / thinking socialising and work
nothing changes if we silent / nothing embraces if we silent
came for us / did that to us / broke the promise / was there a promise
the road / was long / too long / for me / to walk / alone alone
i sold my shoes / made them in bronze / now they can / stand on their
two feet / for as long / as shoes / which not / regularly happen
for shoes / for my / shoes for / everyones shoes / that how / it goes
out of spoons / out of shoes / out of spoons / out of shoes

Lets fork out some times the are a-changing sneeze bless you never say never never think only write only bite the hands that feeds the puppy the lonely puppy in the corner that’s me in the spotlight losing my puppy my best friend but I never had a dog it was never a thing thanks for bringing me supper I always cook for myself these days are warmer than they should but some people have buried their hands in the sand box because they are weird very weird they are manipulated easily nobody put my puppy in the corner because I said so but I didn’t back it up with violence so noone took notice only a couple of people in the back minded their own business but their ears changed direction like deer like oh deer what’s happening over there nowhere I’m nowhere I mean I’m always in the same place it’s called almost living almost living

Uncooked work
on top of
uncooked work
cake bake work
cake baked it
worked it was
the best cake
I ever made but
uncooked art
work is always
better because it
has potential and
I do love potential
more than
anything more
than the real
thing when
it comes to
cakes I do
love the real
thing though
I’m basic like
that

Plight flight diet
cone bone together
covid skeleton inhabit
narrow bone marrow
lots got it lots
of love for lobsters
uncooked in the wild
i woke up raw like
a carrot a cucumber
and a radish together
in a bowl chopped up
ready to be eaten
by the world with
a big W spaghetti
legs not restless
better than uncooked
at least not that fragile

i look I look inside of the celery before I eat it. Novak Djokovich eats celery juice every morning. it is very healthy. if one eats healthy enough and only healthy food for a long time. lets say a couple of years. it’s an acquired taste. like can i even eat anything else at this point? it won’t be easy i’ll can tell you that. ecological groceries have so much more nutritions in them. it’s surprising just look at the research. anyway inside the celery is the answer to everything. does it look compact?

The thing that sparked the format for this blog was a note I found in Kameelah Janan Rasheeds Substack in which she made a rule for herself to write 1000 words every day. I kind of did for a while. But also, it kind of stopped after a while, like after six months. So this year, this rule is now defunct. The writing may or may not happen at will.

is open for business
and the business is
booming 40 millions
sick in LongCOVID
worldwide according
to nature and like we
have just started!
we’re taking about an
illness that doesn't
have a cure but the
new The Cure album
was great but it won’t
actually save us this
time like it did in the
80s and perhaps in the
90s and so on

”Writing from bed is a time-honored disabled way of being an activist and cultural worker.”
– Leah Lakshmi Piepzna-Samarasinha

•

We look up from our doze
we lock up ourselves
in rooms full of bed sheets
working from bed like
Andy Warhol
he would have been very
proud of me now but I doubt
he would use that pronoun
were he born today
he was a proud bed-worker
though
have to find his writing
about this so probably
need to read ”The Philosophy
of Andy Warhol” again
although his films
are full of people living
most of their lives in bed
although not chronically ill
perhaps
still he really tried
to make that cool

”Disability will arrive for everyone, sooner or later […] No matter what form of disability arrives for you, it will bring struggle, suffering, incapacity, limit, and pain.”
– Johanna Hedva

Well I agree, if one gets to live long enough, this will be the case. Some people will of course die instantly unexpectedly without first ever becoming disabled, but just on top of my head, this is still the exception. The majority of people, in other words ”everyone”, will thus be disabled in one point of time.

What does this mean then? It means you should care about disability. Even if you are a ”healthy” individual. It menas that disability is universal. And our stories and storytelling should be viewed as such, not as a fringe interest, only meant for the few.

I recently started reading Johanna Hedva’s new book ”How to Tell When We Will Die”. I’m only halfway through the foreword due to my cognitive disability, which limits reading this type of book, essayistic, to lets say around 5-10 minutes a day. Also my reading tempo is extremely slow. Anyway I came across this great definition of ableism written by @TalilaLewis in 2022. A definition she have been updating a couple of times throughout the years.

”able·ism /ˈābəˌlizəm/ noun A system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, ”health/wellness”, and/or their ability to satisfactorily re/produce, ”excel” and ”behave.” You do not have to be disabled to experience ableism.”

wet bread in the ground
inside the words mumbles
mushrooms rattle
for air
for everything
that comes
tiny little caterpillars
in between it's no
problem really
just thought that
someone has to dig
carefully around everything
that we see right now
slop in a pool in a pool
of crops in a shoal
of pikes in a shoal of fish
on land tumblingafter after after after
anything at all
back and forth
turned caps and mayflies
turning in the door of
your broken twig life
and heart you have no
heart europe has no
heart left it's a
it collides with timber
in the hamstring hurts disputes

I haven’t seen autumn with my own eyes
or I have, through a window I have
but I haven’t participated in autumn
no I have not, no I have not
I don’t participate in the changing
of seasons any more no no more
no no more

welcome to the suburbs
it lies close behind the ear
it lies close behind the spruce
behind the juniper
behind the oak
behind the pine
behind the cones
and the pine cone
needles
behind the door
there is
another door
and a forgotten spin
that spins on and on
on and on and on
on and on
on and on
and so
on on on
one one one
and so on
and so we go on
all of a sudden
another door opens
and we go in it
and we go behind the curtain
too
why not?
ok no there was no one there
nice anyway
very nice empty
empty look but nevertheless
behind the curtain
a moment more
a little longer moment more
and another moment more
and then it just
was completely silent
although it was already silent
when I entered the room
but still

Welcome to the suburb
were we lay down in the hay
it’s not really a barn but
I don’t care so much about that
we have wings but we are not
birds so we don’t use them
anymore we used to use them
but now we’re only tired and
watch YouTube all day long and
fall asleep and dream about the
wings we used to use and Mike
Kelley said he hates pop culture
and that he was an old avant-
gardiist but because he lived
in the post-modern era his only
option was to work with pop-
culture to try to rip it apart
and I think he succeeded with
that that was cool and so was he

My life is happening right now that’s right it is and I’m just like doing what I should which is resting getting better by doing nothing and taking lots of medication which I researched myself because the doctors have given up on me and many many others I mean million others we are left here to die basically sounds harsh but that’s our reality and I live in reality not a fantasy castle made out of hopium and bad faith so what can fix it? well together is better if all the sick people share their knowledge that helps also lots of doctors and researchers are sick with post-viral illness so that helps so lets help our selves lets help ourselves lets do that that we are already doing that we are already doing this and it’s amazing and we will all be better maybe already in this life in the worst case scenario we will be better in the next life in the next life any second now any second now any any second let’s talk about it let’s make lectures and talk about it all about everything let’s let it out out and maybe maybe we will prevail will prevail and maybe it’s time for the institutions to fail like they have failed many times before so I mean more like fail with grandeur the most exceptional fail of all time like they did not trying to study not trying to study post-viral illness so long why are you like this why please tell us why well aslo I happened to know the research of medical neglect it out there already for anyone to see everyone to see everyone to see everyone to see

I WAS LIKE I COULDN’T WRITE BUT THEN I PRESSED CAPS LOCK AND IT WAS EASY AGAIN I JUST NEEDED SOMETHING TO GET ME OUT OF MY DEAD LOCK MY TEMPORARY WRITERS BLOCK WRITERS BLOCK WRITERS OH HELLO OH HELLO OH HELLO OH HELLO LITTLE LITTLE THINGS LIKE THAT LITTLE CAN DO ALL THE DIFFERENCE IT’S NOT A THING THING THINK ING THING THINK ING LIKE EVERYTHING IS A BALOON A BALOON AND I’M BLOWING WIND INTO THE BALOON AND HOPING FOR THE BEST THE BEST THE BEST BEST BEST WORST WORST WORST BET THE BET ON THE BET ON THE WORST WORKS WORK NO THANK YOU I RATHER BE UNEMPLOYED CAPITALISM IS TOO MUCH REALLY REALLY REALITY IS TOO MUCH TOO IT’S NOT A DISCOTHÉQUES LIKE PROMISED AND NOW I’M REALLY UPSET UP SET UP NO THANK YOU NO THANK YOU NO THANK I WAS LIKE I CAN’T WRITE BUT NOW I AM IT FEELS LIKE A LITTLE BIT BETTER AFTER MY FAVOURITE SCENE IN PARANOID PARK IS THE ONE WERE THE MAIN CHARACTER BURNS ALL THE LETTER THAT HE WROTE HE DIDN’T EVEN HAVE TO SEND THE LETTERS TO THE THOUGHT RECIPIENT HE ONLY NEEDED TO WRITE THEM! THAT’S MAGICAL REALLY BETTER THAN THERAPY I MEAN IT IS THERAPY IT DOESN’T MATTER WHAT YOU CALL WHAT YOU CALL IT WHAT YOU DO JUST WRITE JUST WRITE JUST WRITE AND BURN THE WRITING AFTER AFTER

COLD OLD COLD OLD COLD OLD COLD COOL OLD THINK ING COOL OLD THINK ING THANK THINK ING THANK THINK ING THAT’S LIKE INK IN A BLINK IN A BLINK ON A BLANK PAGE ON A BLANK PAGE PAGE AGE OR NOT AGE ING WITH OUT LIV ING AGE OR NOT AGE ING WITH OUT LIV ING PING THAT PLACE PING IT PING THAT PLACE MY OWN PLACE IS A SHRINE IS A SHRINE IS A MONASTERY A MONASTERY IS A RELIC LIKE A GOOD ONE I REALLY LIKE IT I HAVE DECORATED IT MY SELF IN A SLOPPY NICE WAY WAY HEY HEY WAY HEY WAY HEY HEY THAT’S WHAT I SAY WHEN I SAY WHEN I I DID THAT YES THAT’S REALLY TRUE I LISTEN TO SOPHIE NOW TO SOPHIE NOW TO SOPHIE THAT’S WHAT’S UP THAT’S WHAT’S UP NO ONE HERE BUT ME NO ONE NO ONE NO WHAT’S THAT’S I COULDN’T HERE ME ME NO THAT’S TRUE BUT BUT WHAT WHAT’S UP WITH ME ME UP WITH ME ME I’M REPEAT ING REPEAT ING REPEAT ING REPEAT ING THANK ME LATER THANK ME LATER THANK

Someday we have to test test test
what is really self-evident self
clear star clear finished ready to be
get finished not quite yet we should try
a little more just a little more just a little more
it is quiet as only it is quiet early
in the morning before the brain has realized that
what it hears are external sounds and not
thoughts but I don't have tinnitus so I
am lucky downright privileged
as soon as the hats are waiting behind
the next corner another hat
another thought maybe a mitten will have to
wait for the winter I don't swim in my
bathtub doesn't fit but would like to
some rich people have swimming facilities
in their homes but are they happier
for that? probably haha ​​probably
if they love swimming how much
but swimming publicly with others
will still always be more rewarding
i can't handle it or it's the
worst option the option completely
without options for swimming swimming

oh god what a morning well that was a
lie this morning was just like every other
morning and I mean exactly the same
that was the whole point the whole point
with pacing that is routines so strict
monks and nuns would be proud of me
so proud I would actually love for a more
monastary situation imagen having a
whole building in tune for one’s pacing
that’s almost utopia for a chronically
ill imagen that and that all the people in
this house all of them are tuned to your
and their own pacing pacing in this sense
would mean a practice a belief system
which in the end is all that pacing is
sin religion so to speak it can be secular
the belief system can revolve around
the similar thought and practices anyway
that’s what I was thinking about this
morning anyway and now my lunch is
ready yes of course it’s organic and it’s
part of the whole practice as well as
is everything just as in a monastary
everything that happens in one’s life
is part of a bigger plan a bigger frame
work and in this sense nothing is left to
coincidence it sounds harsh but it can
have the opposite effect it can be free
ing ing ing ing ing ing ing ing ing ing ing

when doves cry I cry at least I try to but I
dont actually know if the doves are sad or
just out of their mind for other reason and
does it even matter at least I care enough
to notice and I don’t eat meat I don’t eat
bird I do eat some fish and the reasoning
for that is that would be able to kill a fish
if I had to but not the others meantioned
but anyway I don’t even like the taste of
the other meat never have impossible to
swallow I had to pretendeat meat when
I was a kid sometimes like lol anyway I’m
just here in my couch trying to write
without thinking let the writing do it’s
thing the money the money where did it
grow I find the spot sometimes and some
times not I’m at least priviliged enough
to be chronically ill in a welfare state well
what used to be one at least what little
is left of it but lets not spoil the mood
already it’s so early in the day/week/
month/year and I only have so much
mood in me today/yesterday/tomorrow

nobody put M.E.
well everybody put M.E.
in the corner
that’s where M.E. lives
in a corner
in the corner of history
like hysteria
like women’s illnesses
that the patriarchy doesn’t
want to touch
but they do want
to psychologies it
oh yes, they sure want
to do that
I’m almost laughing
it’s so pathetic
the good thing is that
we will collectively
smash the patriarchy in pieces
with patient driven initiativs
and everyone gets
a second chance at life
even the perpetuators
because we into forgiveness
and such

I dream a little dream I dream
nothing as such as such I cry I cry
about the sky the sky why not
welcome to my hotel in Stockholm
no charge it’s not even a hotel just
a room a room it isn’t even an
art project in the form of a hotel
in California by Allen Ruppersberg
in the 70s no this is chronic illness
hotel with only one guest and
even that is more than I could
handle art imitating hotels is
fun I’ve seen a couple of those
but maybe Allen Ruppersberg
was first, who knows it’s
not even important I used to
make projects like this more
large scale stuff involving others
but now I can barely sit up and
the stuff I make now is very small
or very big like these words are big
if you’d print them on a poster
in instance why not print these
words on a poster on a poster

welcome to the island in the sky
where pie go to die and I try
to make sense of the world within
many journals do not accept poems
that rhyme any more I think that’s
funny I mean I understand why it’s
like they get to much crap that’s
rhyming but still funny though I mean
the whole thing that there’re so many
people writing in rhyme these days
if that proves something perhaps it’s
that the rhyming form of writing never
will go away just it will never happen
you can probably do a lot of interesting
stuff still with rhyming that’s a given
I give myself any permission to write
the worst poem of all time because
it’s not about that of course it’s not
even about what I want the poem
will be best if I want nothing just like
but I was only rhyming a little bit now
in the beginning maybe that’s ok

rust and bones amd rust trust im sleepin inn my shoes inn in there and thats ok i try and a so should u i and them we us come on and try me don’t do any thing anything and any a i kno by whoom i try cry sooo we should go not go anywhere i forget forget bread because i didnt eat it for so long i had pauses longer than your head can fathom your head can fathom fathom longer between ideal ideas there are we right now i would fall that behand schedule schedule me now

I am a little bit
exhausted i mean
a big huge bit ex
hausted i feel haunted
planted in a pot with
rotten dirt I feel sick
I feel sick I feel sick
I feel poisoned to be
fair I probably am
poisoned I am Poison
by Alice Cooper I’m
bad I’m bad I’m that
Michael Jackson song
as well my thoughts
haunt myself taunt myself
with negativity but
I try to dig myself out
of that whole everyday
and that takes work and
patience and song lyrics
that take the role as
company in my biological
confinement my involuntary
isolation my bed my couch
my bed my couch I rotate
like a record spinning
the song lyrics become
silent conversations in
my head and I’m better
for it I’m bad I’m bad
I’m really really bad
actually that’s true
and I’m poiso too
all that’s true I’m a
cliche pop lyric from
the 80s lol

Folklore baby shoes dress an animal up and take silly pictures but please don't do it I'm only kidding I hate those kinds of anthropomorphism pictures don't talk to me like that brain fog inflammation of the soul soup no thanks salad yes it's time it's always time for salad no matter what

time be like I like salad cold in the summer soup warm in the autumn which comes later and later in the year every year because of climate crisis climate disaster mass death mass migration food shortage will follow

Full plot twist twist hemvist hem visst
hem borta bra hemma sämst hemma
bäst hemma alltid hemma alltid hemma
always home always home like really I
mean really absolut javisst sanning the
truth is that it’s boring that’s it’s frustra
ting and and and so so so on on on
more than that more than you can even
imagen because experience is some
times necessary to really get it sure
you can understand cognitively what
I’m saying but you won’t know the
depth of it
perhaps if I wrote a book like a novel
about it
perhaps something like that is nece
ssary something that takes time and
doesn’t spell it out directly but lets
the reader experience the plot by them
selves and with that exerience comes
knowledge comes empathy is this the
whole point with novels btw? like
can poetry do that as well? perhaps
but the difference is that a novel lets
the read take time with the matter
and this is important in this case
hmm
I’ve already started writing my first
novel it’s pretty poorly written but
it might have sometime in terms of
ideas
who knows

It was wishy washy the whole thing
everybody getting covid at the DNC
everybody body getting covidcovid
at the RNC
at this point there’s just two genocidal
cults, which one do you favor?
which is your favourite brand of genocide?
which is your favourite color of genocide?
free free Palestine until it’ll be free
free every palestinian in israeli prison
yes they are so many many more
and let the palestinian children live
why can’t we let them live? why? why?
nothing can justify bombing them to
death
nothing
so stop with that immediately and lets
start rebuilding this is not utopia this is
factual and it needs to happen right now
not later not later
the west is a genocidal disgrace and it
has to stop right now right now

I must put it behind me
must put it behind me
must breathe, so must
force myself to breathe
you see
must force myself
must not strain my
muscles
you see
must find a job somewhere
but I can’t work
you see
must fix so much, so much
I must fix and no coffee
no coffee
just productivity, much productivity, my
productivity, I utilize, I look, I
it’s me again, it’s me again
sure, always everything, time is utilized
slowly, very slowly, still
okay anyway
you see
messy apartment, just
accept it, nothing to do
if the arms can’t clean, what
exists if not the will can clean
without its arms, goodnight clean-
ing
and hello everything else, and hello everything
else, and me, everything else that
I want to do, everything else must
think about it, everything else, all
my things, all my things
everything else, all my things, all
my things, everything else thinking, everything
else, my things, everything else
thinking, everything else, my things
death cleaning? everything else, my
things, death cleaning? everything else
my things, thinking, wanting to clean
everything else thinking, death cleaning?
everything else must, my things

SOMETIMES I WRITE
SO FAST I DON'T
HAVE TIME TO
SPELLCHECK THE
AUTOSPELLING ALGO
IS DOING ITS BEST BUT
CAN'T REALLY CAN'T
REALLY KEEP UP
KEEP UP KEEP REPEATING
THE SAME MISTAKE
EVERY TIME I DON'T MIND
I’M JUST HERE IN
FRONT OF THE SCREEN
IN FONT IN DARKMODE
ON THE APP WHERE
A LOT OF OTHER PEOPLE
ARE AT THE SAME TIME
I DON'T MIND
I MAKE MY OWN PLATFORM
SO SURVEILLANCE CAPITALISM
THE DEATH CULT
WON'T HEAR WHAT I GOT TO SAY
ITS OK DON’T MAKE A BIG DEAL
OUT OF I'M THERE AS WELL
BUT IM TRYING I’M

We and we, they and us
we bake our very
own cake, like
them and us
then it was all
eaten and it became
cold and bare and
meager and then
we also took time
that we needed
to heal, to
self-heal everything that
medical science
had ignored and it
wasn’t little, many
are those who have fought
for a long time for what we
today see as self-evident
and the memory gaps
the cracks in the cabinets
are still bigger
than the cupboard doors, once
I met John Bock
at his own exhibition opening, he had
glued his daughter’s
tooth under an iron bed in
some sort of bicycle wheel that
could be pedaled if one found oneself
under the bed, I also saw
how he gifted a
piece to Daniel Birnbaum who
was the director of Moderna Museet
at that time, Bock gifted
a piece that was a sculpture
in the form of a small cardboard box
with an inflated
balloon inside that Bock had
sprayed with shaving foam, perhaps
the strangest piece in the exhibition
and if you're lucky, sometime
in the future, you might have the
chance to see that piece in person
on Skeppsholmen. All
culture should be free, yes
free, not just at no cost, because
“free” is a finer word, so

TRYING AGAIN AND IT WORKS I THINK OR IT DOESN’T MATTER BECAUSE FOR SO LONG SO LONG I TRY I I I I LEG WHITE LEG I THROUGH THERE IS ONE OF ME AND IT IS ME I THINK STILL SO THAT I WANT TO BE AN INDIVIDUAL DON’T WANT TO BE EARTH DON’T WANT NOT YET NOT JUST NOT ONLY CAN’T I BECOME EARTH ALREADY BEING SO YOUNG SO WE SHOULD TRY MORE SHOULD BUT DO WE WANT DO WE DARE CAN WE EVEN THOUGH EVERYONE WANTS WHY DOES NOTHING HAPPEN WHY DOES ALMOST NOTHING HAPPEN WHO THINKS NOTHING NOTHING WHAT WHO WAS WHERE WHY HOW AND SO ON I AM JUST ONE ONE ONE AND HALF HALF HALF AND NOTHING ELSE NOTHING ELSE BUT TRYING TO GET ME GET ME GET ME GET ME MYSELF GET MY OWN SOUL SELL MY OWN SOUL TO MYSELF MY OWN SCARF AROUND MY SOUL BECAUSE IT IS FREEZING IT IS FREEZING IT IT WANTS BUT IT CAN’T SAVE EVERYTHING ON ITS OWN SOUL SHELL SHELL I AM INSIDE MY SHELL IS SOFT LIKE ICE CREAM LIKE ICE CREAM

Deep hydration so deep
I’m swimming in t-shirts
no t-shirt today it’s so
hot I’m not moving but
I aint moving any day
so it doesn’t matter what
I say or what I do I do
only what I must which is
to survive yet another day
in hell in hell in hell in hell
I aint the best me I’m the
next best me so it could
be better I wasn’t writing
a poem for 10 days because
I couldn’t but today I can
I think it was because I
had too much neuro
inflammation in my brain
or think I know that was the
case I didn’t want to do
anything I’m gonna try
the supplement Glia tomo
and let’s see how that
works or not let’s see if
it can help the microglia
as it promises no one no
one no one no one really
knows know what to do
it’s really an experiment
and I’m experimenting
I’m swimming in poems
I’m swimming in t-shirts
I’m swimming in illness
I’m deep hydration salt
sticks and it’s 20:16 on
a Wednesday

I’m a bird
a small one
tiny head
tiny brain
that would
be enough
to manage

I’m a little bird
on the beach
I’m a little bird
on a tree
I’m a little bird
singing
I’m a little bird
dancing

The eyeball in a neurological
grip on sight makes it
blurry in the distance, if
only everything, only everything, only cold
very cold, it’s all about
what can and can’t happen
turn, turning a page in life
turning behind eyes, behind
ears, behind eyelids
on the lid, on the eye, gaze
on the lid of the eye, saw
something far away
without eyes, without, all, all
can’t, can’t take, must look
see, watch, feel, pretend that
to and must that everything

I I we they them them us
we we we us we us we us we us
them them they them we us I I
want want want to pray pray pray pray for
us pray for us pray pray pray for for
us we they them we us them they
them us we want you to pray for them
them them us we us we yes I I
we want we want you to pray pray pray
for us us us we we we want want
us us we want to pray for us we
want we want to pray us for us we
want please pray for us us we
them them us we I we I we us
we them them we us them want want
to pray pray pray we want them them us
want us want we want want I
without wanting to pray without wanting to see
us without us without wanting want
to believe hope take a chance toxic
gambling hope believe pray
it’s not enough not enough not enough for us we
want more to have without wanting to pray
us without us without wanting want
to believe hope take a chance toxic
positivity gambling want to pray
hope believe in us we want them
to give given given gift in the form of
hope hope want to pray us no
thanks not no not want to have
thanks but no thanks want to pray
have toxic culture I we want
to pray culture of toxic toxic have
have pray want to pray us want to get
no want to get yes also we want
to have everything everything you have
yes yes no not no oh maybe
also we think also they them
also everything also I also
also in also in theirs also
in his also everything also behind
also his also I also
want to pray also want to take want to have

Hope, regret, choose, pray, don’t pray without
wanting, the breath lands in the throat
kind of off or not off, but
empty, can’t breathe properly, get no
air despite breathing, my blood oxygen
doesn’t, my muscles, the brain is
a muscle and it behaves strangely
without oxygen: dysfunctionally, I invoke
my body memory to save energy
let fingers, hands, body act without
engagement of the
the brain office has been closed all week
it says PEM on the schedule, meaning brain
inflammation, hence all brain
cells have called in sick
I hope to regret words in hindsight
that would mean I tried
to say something that wasn’t easy to express
I hope to regret words I write
in hindsight because they were written
with the help of body memory and
didn’t fully use
inflamed brain cells
I hope, hope that I don’t have to
explain, but I have to explain
I have to explain everything so many
times that the explanation rings
false, what was originally a
discovery, a revolution is now a
kind of incantation: every time the incantation
is uttered, the normally healthy gods call
my god lazy
even though my god is sick, very sick
belief in M.E. is hard to interpret for
outsiders, it’s downright illogical
it’s PEM, it’s goodnight but in another
language
it’s morning, or it’s day, or it’s
evening
is there someone kind who can also
interpret research reports, meaning
competent, and do the kind ones want to
research specifically about PEM

The orange sky blows the beetles away
waiting earthworms miss cookies
can’t just eat, must eat healthily
earthworms only eat organic
and very nutritious food
earthworms love only organic
soil
they are so woke you wouldn’t believe it
they are so left-wing that they completely
ignore the capitalist incentive
to eat ultra-processed
food
earthworms die if they eat a Big
Mac
earthworms crawl where you can’t
see
they are our alternative phantom fingers
when our fingers dream that they’ve separated
from our exhausted hands and
returned to a more natural and pre-
historic era
without demands on the mechanical
performance of fingers, as the core of
the attention economy’s screen
society
the earthworms dream of being
freshly watered but are dried out
the earth protests against the sunlight
whose
merciless rays have torn apart
the earthworms’ habitat in a
collapsing ecosystem, our own
fingers, whose pointing has bent

Brain fog means brain damage
”C.F.S.” doesn’t exist”
M.E. is more correct to use
this is not a poem
its civics
it should be common knowledge
especially in medschools
where M.E. is still missing
from the curriculum (worldwide?)
that’s not very 2024
if I may say so
”C.F.S.” is a political term invented
to minimize the biological aspects
of the decease to try to frame it
as psychosomatic etc because
capitalism because corruption because

My mouth
my feeling
the words bite
my lip
shines away
only exists
headless in
terests beyond
conscious thoughts
we want to live but
is there room for us?
when everything is just about
cash, am I
an ATM that
just pretends to be
a human?
my thoughts are
a japanese drum machine
from the 80s
without batteries, all
patterns erased
my stomach lacks
certain strains of bacteria
in its entirely
what can we do to
fix this when
everything is just about
cash?

Morning makes the windows
wine
like I wine to myself when I’m
tired I cannot resist feeling
sorry for myself will you blame
me?
autoimmune like hell i just
everything is a balloon
everything is therapeutical
if you want it to
I ate apple for breakfast
not only but
I look at my poems from one
month ago and
recycle a few words, sentences
here and there to get going
starting from a ”blank page”
is sometimes difficult
it’s doesn’t really matter how
the words get written done
and what it’s about some
times words have a way of
finding themselves form
ulating themselves just
today my head ache writes
my poem performed by
my hands
and with headache I mean
neuroinflammation in the
brain
my hands, my gloves
that want to have hands inside them
and want to be washed at 40
degrees or so by someone
who has the strength to carry the laundry down
to the laundry room and back up again
I don’t even use gloves
because I don’t go outside any
more, but out of principle, I have
gloves in a box on the hat shelf
my only choices in life are about
survival
the few things I do are about
my illness
everything in this poem is about
neuroinflammation in the form of
headache

There’s a little bit of sun
shine or to be precise
there’s lot of it today
too much even
the outdoor workers are
dying from it
and others too

I’m staying indoors as
per usual
and I’m at loss for words
one poem a day
or that’s nor entirely true
sometimes more
sometimes less

I am bent between every
piece of the puzzle the
unsolved riddle of M.E.
unsolved riddle of me
every cell in my body
is working against me
or most cells at least
I don’t have the full picture
no one has
it’s like we will never
fully have the full
picture of what’s
going on in our bodies
that’s why the physical
always will reign
will guide us when our
cognition become to dominant
submission to the physical
is of course liberating
no matter what the
physical condition might be
if it’s death so be it
to speak with Seneca
his coping method to
be able to stay mentally
stable whilst
working as the hand
of Nero the emperor
of Rome 54-68 AD
a ruler that could kill
anyone of his staff and
did so regularly for petty
or not so petty reasons
this extremely volatile
situation led Seneca
into his approach
of already accepting death
as not only unavoidable
but that it could also come
at any moment and this would
then mean that he had
to mourn his life pre
maturely as he would already
be dead just like
chronically ill people
that cannot parti
dilate in life has to too

when the mourning is done
and I mean this can take forever
or a couple of years or
some pro’s might be able
to do it quicker (but time wise
hastiness is not a goal here
the mourning process is
in itself interesting)
I see fake funerals in California
for oneself in sitcoms
I see fake burial rituals in
South Korea online etc
all for the same reasons as
outlined here

obv one cannot escape death
everyone knows that
what we can escape is
fear of ones death when
ever it might arrive to
speak with the coping skills
of Seneca: it might happen
today or perhaps
at the latest tomorrow by the
hand of my employer my
emperor my work here on earth
is already done
come what may I am ready
my mourning for my
life is already done

I am bent between all this
all generic information all
ecological vegetables in my
soup on the stove i make for
myself i am rewriting every
little thing again that how
one goes from a paragraph
to a symphony a symphony
of destruction: my own
perhaps post-descruction
is more accurate the waste
land inhabited by myself in
my house of decease the
writing help me to stay alive

if it feels like a game
that’s good
very good
in fact preferable
it means the
dissociation is
working
working for me
at least I’m in control
of that
I’m in control of my
own dissociation
it’s a balance act to
try to keep it together
but at the same time
not become apathetic

Once upon a time I had a life
so dull and boring and the opposite
it was everything one can dream of mean
ing it was too much of everything hard
to grasp and make sense of one of
the most tedious things with chronic
Illness is that it’s so predictable that
seems very unnatural

I’m having boredom
delivered to my door
by an unpaid gigworker
it’s not their fault my
life is nowhere to be
seen rather the opposite
is true they’re an en
ormously great help
for someone who can’t
walk out the door I
just wished they were
better payed

my welcome mat
is very flat
it is not great
but it is not late
it is the beginning
of the thing you
wanted
a thing that everyone
said would be fun
but was boring as
hell
I went anyway
in my head at least
it was enough
I had fun

Almost close, wanting to be near? why
and we they believe we do not when therefore
wanting to feed wanting to eat unwilling to hesitate
I think I think I think and nothing happens right
now and therefore everyone just believes
and hopes and wants
the will is not the strongest when everything comes
it’s just that I stay as long
as I can because otherwise I would
have to wait outside for so long and I
can’t bear that if I can avoid it
someone has to take responsibility and that’s
everyone else not myself not close to me
therefore everyone should too we
someone absolutely must look should see
we shouldn’t come so early
to the party but it can’t be helped

Who cares? / WHO cares? / I am
for us / will they / care now?
no one / believe / me when I say
look at what / I did / I did wrong
silence / happens / I thought
silence / as / out of / the q
no one / but me / will say
to me / that we / are weird
and thus / everyone / is playing
kool / even though / it’s uncool
and everyone / knows it / deep inside
deep inside / me / there is
M.E. / and that’s / not fun
not not fun / having the / time of my
life / inside a / box
called / an / apartment
and I / say that / I will
live forever / in your / mind
I will haunt you / to the / end of time

I am us / it’s not fun / to be
us when / everyone else / is them
we try / to be / me but
it’s hard / try harder / try getting
better from / your cancer / by believing
it really / works / it really do
wonders like / Lord Jesus / would be proud
of you / for doing / God's work
that is / God’s work / of refusing meds
and putting / your life / in the
hands / of grifters / every time
but repeating / the same / mistakes
over and / over doesn’t actually / make
for a / good story / arc
more like / what the / hell

I am not us / I am only them / inside
and out / I am a little / little drop
dropping / all the way / to the
floor and / back dripping / upstreams

I want I want I want I want
I get I get I get I get
not not not want want want
want want choose choose want choose
for whom? for me?
for whom? for me?
behind in front behind in front
why which why which
many regret, many regret
nothing falls asleep nothing falls asleep
behind why behind why
no one thinks no one
the room massages the retina
behind in front changes
someone no one ever who wants
for me? now or maybe
then? just if we want
maybe also then we believe
we think we want them
they and / them we us I
again I again I again
they want us to them we and I
us they them them us
also we want believe we and
also and also they them
we want us we believe we also
want we I I I we who?
which how when where too?
believe think want choose want
choose us I want they want
them want they want us think
for whom? for me? for us?

I saw an interview with the singer Yoshimio
of the band OOIOO

she said *always be like a newborn”
that’s the best quote I have for the day
it’s the best advice I’ve ever heard and I
will aspire to live after it’s device
(I’m not gonna link to the video because
the interviewer was terrible imo)

a lot of right wing extremists online
have gotten stuck in a bitterness loop
they should just quit that religious sect
and be like newborns f******g happy

I’m a new born this morning I feel like
I’m cooking black beans like a new born
lots of kitchen responsibilities at such a
young age I know

this newborn just shredded a carrot
and thought how to continue this poem
I couldn’t think of anything and that’s
perfect just like a f******g newborn

OOIOO said about their band name that
if you look at it vertically it looks like
two suns, with a reflection in the water
beneath

Doctors researchers healthcare professionals
without understanding without shame
call it functional illness
or even worse psychosomatic
smart to rebrand the hysteria diagnosis
because it’s too misogynistic
but still wanting to keep the erroneous parts of it
still wanting to hold to what we in Swedish call
‘problemformuleringsprivilegiet’
to the extent that their own knowledge
does not need to be developed to include
women’s biochemical composition
the psychosomatic crowd mainly consists of
psychologists who want to boost their own
research at the expense of the lives of those with M.E.
(email me and I’ll send you their names)
it’s not just bad
it’s terrible
it’s 2024 and please help us

Time is something else
For me
Someone puts time on the shelf
My illness
Time is a minute
Far away
Time is a clock
Like falling asleep
Must eat every two hours
Insulin resistance
I don't know if that's the correct term
But probably

Every day at 12.00
I make a smoothie
to stay alive in a way
it contains things
that support my
dysfunctional mito
condria and various
fruits and berries to
hide the taste of those
supplements in a way
to stay alive through
following a protocol
so detailed elite
athletes would be
jealous of no I’m
not seeking validation
to prove something
or make a point
about ”succeding
in illness” girlbossing
my illness on LinkedIn
it’s mandatory in
short nothing else
I don’t live on that
kind of attention
or pity for that matter
or anything else out
side of my body it
just want to be a
little bit more function
al in providing oxygen
to my muscles that’s
all staying alive is
an artform everyone
knows that it’s a
cliché so one has to
find ways to express
exactly that but with
a delivery more personal
or less high-flown or
whatever it’s doesn’t
really matter how
and this is just a
diary and my
14.00 meal is just
ready which means
this text was
written in between
meals just like every
other texts out there
have

”The apocalypse is already here; it's just unevenly distributed.”
quote
zombie plastic
that

“Plastic is this zombie medium,” he said, because it does not decompose and is made from fossil fuels derived of dead organic matter. “Steel is a technology of empire that enabled guns, the colonial project.”
quote

zombie people
me

containers in the harbours
freight trains
that

with all the things we need and we don’t need
those

in the bathtub sleepy
me

watching the world go by
without looking
me

I do what I must
I die a little bit every day
I cry too seldom
I don’t overexert meaning I’m barely alive
I do my best and it’s not good enough for my illness
I damn the people responsible for this health crisis even though some of them are dead
I don’t go outside
I don’t always want to look at streaming
I don’t always want to eat healthy
I do my best but I’m not always in a good mood

I, brain is not the same
I, also would like an ice cream
I, notice what you’re not saying to me
I, would also notice if I was there
I, too am a forest on fire
I, too would like my fossil fueled up future to be backtracked
I, am anxious about growing up
I, am a question mark
I, therefore I am

Somebody put I in the corner
Nobody put I nowhere fast
A lot of us are just horizontal a lot
A lot of us are absent all the time
A lot of us put words in the world where they belong
A lot of us are smiling but no one can see it

To extract coal from
the ground uncool
cold hands turn
twigs branches
things don’t want
to do anything
least of all think
everything in the room
is still small
insects here and there
where my possessions
stands as a substitute
for art exhibitions
I can't visit an apple
is an experience
a daily newspaper
fallen to the floor
a performance
my memories are my
friends and it’s impossible
to know them all welcome
I tell myself and turn on
the computer there are
things everywhere and
more will be added my
stool chair sofa become
something else one day
all stories are written
by someone nothing
stand still for long
I know someone
always have to say
the obvious and
thereby paying the price
of conveying the truth
which always is high
ask yourself how many
times Greta Thunberg
has been arrested
to take a local
hero as an example

The poem is isolating itself
from itself I
don’t write in my first
language
although the poem likes to
be a bit simplistic at times
like a ABBA lyric
just enough simplified letting
thoughts transcend personality
and become biological process
more than anything else I’m
desocialising myself with the
help from chronic illness having
an ongoing farewell party for my
self image

I am childishly attached
to my life
just wait
the glockenspiel plays
in my head
it’s the first time
I’m unexpectedly lost
in the most undesirable

We have taken our medications
all across the nations
(yes the the nation-state is
a fairy tale, but we are still sick)
and FoHM wants to help
but they’re having trouble
adhering to their own most
basic code of ethics but we know
you’re in there somewhere
in the office
*people with a conscious*
please take over!

No beach on my tongue
I’m still young
but what does age matter
when time stands still?
I just woke up and have
only opened one eye
the right one
I can feel the effect of
reactivated virus
all of my dreams incapsulated
in my cells unable to break
free like a tortoise on its back
look a metaphor! I’m so bad
at those usually it doesn’t
matter if you’re rich or
poor, healthy or not but
you gonna have to serve
somebody
well, it may be the devil or
it may be the lord
but I’m serving the virus

What’s the power
inherit in the chronic
illness named POTS?
my own brand of POTS
includes a very tough
aspect: I have to lie
down all the time
ALL THE TIME
there are other aspects
of POTS of others peoples
experience with POTS of
course
I can only give you mine
but let’s talk about the
fact that I have to lie down
ALL THE TIME
what happens psychologically
after 1 year
horizontal
after 2 years
horizontal
etc
and POTS forces me to do
this all alone cognitively
I cannot cope with physical
company almost in any
capacity
to be clear I lie down
semi-horizontal daytime
in my couch on the Internet
mostly semi-engaged in
non-sense due to my
cognitive capacity is
also limited thus writing
like this happens in the
morning before my spoons
have been spent on
trying to survive the day
ful transparency I can walk around
a bit in my apartment during the
day to perform the most basic ADL

but to get back to
the original question
what’s the power in inherit in POTS?
I think about this obv.
every day every hour
unconsciously and I think
I need to think more about
it as well I think that it could
almost be a whole book about
this topic because:
what doesn’t the fact of having
to lie down ALL THE TIME change?
in short:
EVERYTHING of course
that’s the super power
the power to be my own contrarian
to everything I used to take
for granted as a previously more
healthy individual, body wise
mentally you have to be flawless
basically to survive severe POTS
because that’s what the illness
demands out of you: EVERYTHING
complete loyalty and complete
submission
of the kind that you can only find
in equal degree in monasteries
perhaps
I’m not an expert I’m just writing
things on top of my head
and that certain head has a
brain damage called brain fog
(yet another symptom of POTS we could
go all day naming different symtoms)
the debilitation is the super power
the super power no-one asks for
but perhaps, when it have happened
you don't want undone, that is:
you don’t want the insights of the illness
undone
how can I go back to my old brain from
my previously healthier body now?
it’s too late, I have learned to much
about myself about life
when lying down all the time for
several years you have to learn
to see everything for what it is
there’s no way of polishing things up:
reality stares you directly in
your eye, and there’s nowhere you can hide:
no distractions are available:
no running away from facts:
literally!
by facing everything at face value
a certain amount of self-heeling is
absolutely necessary
and thus the work begins...

Welcome to da real world
da real world of chronic illness
it could be a reality show
slow tv just a person sleeping
almost all through the day
I can’t believe that Andy Warhol’s
films still can be so relevant
but why resist? His film ”Sleep”
from 1964 portraid his lover the poet
John Giorno sleeping for five hours
legend has it that he was a great sleeper
sleep is of course political today
because it’s one of the last things
capitalism haven’t fully succeeded in
monetising yet, although they are trying
as hard as they can!
As Jonathan Crary lays out in his 2013 book
”24/7 Late Capitalism and the Ends of Sleep”
this argument makes totally sense
from a chronically ill perspective
of course sleeping is frowned upon
it’s the same ableist framing that
is used to dismiss chronic illness
as ”laziness” or psychological
”you don’t want to get better” etc
the system and the people inhabiting
the continuation of this system
in it’s current form wants to
shame anyone that have a somewhat
reduced work capacity because
work capacity in their world
is the sole and/or main component in
their so called ”humanity”
”we are being bread to work”
”sleeping is overrated”
”humans are disposable”
therefor
”chronic illness does not exist”
fascism basically
hurry hurry I need some more
art and poetry
about sleeping people quick
before I become disilllusioned!

I write I write
I wrote we wrote
the same never mind
I was then we
I like the story of
Hundert Wasser
He was born last
name Wasser but
being named only
Wasser (meaning
water in singularis)
was not enough
thus he renamed
himself one hundred
water Hundertwasser
I love that for him
and for me as well
and for lets say
André 3000
he outdid us all
although his name
could of course mean
many things like

George Monbiot of The Guardian calls the neglect of M.E. (Myalgic Encephalomyelitis) The Greatest Medical Scandal of the 21st Century

⌨️ 1000 words a day

📱written on a tiny screen at 7:00 around when people in my time zone wake up we wake up to illness of course it’s every day

📧 this morning I read a news letter e-mail from the artist Kameelah Janan Rasheed where she wrote ”I am pushing myself to write 1,000 words a day. I will share some of it every month or so.” that’s when I remembered that I too am an artist who writes I will basically just attempt to do the same and write 1000 or so words a day and occasionally put it up on this website but because of ’crip time’ it will not be 1000 words and it will not be every day but I like the sound of it and that’s what’s important if you like the sounds of certain words read or spoken together after one another that’s a great start of the day and that’s how this day started despite or thanks to chronic illness and KJR

🌃 This night I slept between 21.30-5.00

I am a seashell of a man
I am swimming in time
in my own time its like I’m
possessed by all things
slow I'm micro I’m evening
I am everything but the chair
I’ll take my chances with survival
thank you it’s only hard if you
resist if you and here I mean I
if I pretend if I fake wellness to
join your ableist club called life
I am ant and im proud my voice
is not loud I am lousy my curtains
cover my ears I live in a forest
and here’s why: I am broke due
to discrimination it’s as old
as time and I am crawling on
footsteps in the windchimes
in the meantime and here I
mean timewise it’s scary aging
without being alive i can tell
u that much

It’s morning in Sweden
and I am too sick to sit
that spells like a punk
song: too sick to sit
too sick to sit too sick
to be well and too distraught
by pain to even care pain
has a tendency to flatten
everything into distilled
drops of seconds raining
endless raining where
sequence is diminished
everything is now and can
only be now pain won't allow
otherwise and otherwise I am
good I am in my head and I
can't sit on a chair so you
have to sit in one instead
see it as you may

evening makes the windows wine
and im still fine but thats not a
point my joint in my finger bruised
autoimmune like hell i just lie down and
wait i am a professional waiter i waited
six years for a cure but i met people who
have waited fifty im still such a baby waiter
and there’s beauty in that too after all
im talking about me here this is not medical
or therapeutical advice per se i mean
there’s beauty in dying slowly so you
can watch your own body decaying
that kind of beauty i didnt kill my
self even though MAID suggests it
its cheaper for the state to kill the
vulnerable instead of curing us
we were not meant to survive
and that leaves no room for trust
other than other patients support
our history is one of neglect and
waiting im still waiting and thats all
there is to it endurance

forget sunshine im still
in ben im still in my bed
i dread everything and thats
ok i havnt lost more than
anyone nothing promises
more then light i go where
chronically ill go every day
its sun in my mind but im bound
by the body in distress so
cold the light the lamp
naked me guessed my own
name wrong i deserve to
remember days again memories
is created when things are allowed
to happen or else everything will
be forgotten like us this sculpture
is about that forgetting that still
ness of not remembering what
illness felt yday because i wasnt
here really here like i mean really
i wasnt its not sad if you dont want
it to be im still i still get up in the
morning to go directly back to bed again
catching sunlight through the
window while sleeping some more

im bent betwe
en all that i am but
i am nothing but
an event a pause
i am but a drop
in the biggest
mass-disabling
event in history
a happening i
exists as text as
body as far as i
am able so
small so vulnera
ble it’s ok its
death and i need
myself and every
one else too