Life In One Room

Crusty sandwich always eating like every other hour of the day like small meals or snacks keeps the energy more even due to can never remember the name of the diagnosis exactly but it’s probably linked to MCAS plus also intermittent fasting have the same effect it works the effect being a more even distribution of energy during the day of course of course of course let’s feel like individuals again I can hear weird noises through the chimney I’m saving up for my own chimney in the future plus everything else I’m not gonna I have brain damage you know what they call brain fog in the news these days is often just plain old brain damage but what if we call it fog instead right to smooth things over then people won’t even know what hit them just like when SARS got named COVID not to scare people to death by naming things what they truly are I want out I mean will you blame me I can hear my neighbour couching I know exactly how her cough sounds like she’s couching regularly which I never do I never cough never cough never cough I always couch I always couch I always no more browsing late at night well it wasn’t even an issue it’s just a standard saying I read a little in the Big Bruiser Dope Boy book tonight and that prompt me to write this poem which I have no idea what’s it about or if it’s good I don’t understand half of the BBDP poems so maybe I’m onto something knowing to much you know this isn’t a trial where words are weaponized so it’s ok to understand half some people just read for fun some people don’t bomb for fun but for power some people write for power and their books sucks some people write for fun and their books don’t even have to be good to be good if you know what I mean some people say do you know what I mean every time they say something and that ok too I want my identity back thanks ok that’s I mean I have pretty much the same identity even though I’m incredibly ill so I mean more I want my life back identity is intact hardships aside it was good in first place I reckon having stood by firmly like a rock when all gates of hell was opened I will read and edit this poem tomorrow morning to see if there’s anything in here worth keeping stay tuned now I’m gonna read one more BBDP poem before I go to sleep

As I drink tea in the morning contemplating vacuuming the apartment just now I come to think of Lars Norén’s diaries where he obsessively cleaning all the time it is the one thing that keeps him calm I wish I could get there but it’s so sad he died from Sars-CoV-2 he could have been protected but the mitigations in Sweden were nowhere to be found that’s right mitigations not everything has to be called restrictions you know wearing a seatbelt is not called restrictions it’s mitigations

mitigations in terms of a pandemic of an airborne virus such as Sars-CoV-2 could entail airfiltration with HEPA-filters, UVC-lights and obviously masks also I demand a monument for the deceased in the pandemic why don't we have that already? is it because we are embarrassed that our pandemic strategy was a complete failure? which were investigated by Coronakommissionen

moreover I demand a separate monument of Lars Norén doesn’t it feel like Jon Fosse got the Nobel price in Norén place? I know still Fosse deserved it sure but it felt like Svenska Akademin had wanted to give it to the Swedish play writer/author but since he died prematurely we give it to ”the other” worthy Scandinavian play writer/author instead sorry Fosse you are cool too

A sandwich flying through the air
I don’t even eat those I mean it’s
gluten you know what I mean
poison for people with MCAS
my own forehead is approaching this
evening like a ball without guests
like Drake in an empty rented out club
gambling on a big plasma alone post
his prime it’s ok he got more than he
can spend anyway the richer the rapper
is not always good for the music we all
making what? ourselves heard in the
back of my mind there is another
voice trying to find it right now
peace for people with MCAS
is a strict diet for eternity I’m in
for the long haul

Like I mean really it was so bad I tried SSRI but all I got was increased weight and vegetable brain I was to drugged out to even realise I was drugged so it didn’t help I mean I don’t even remember that period so been there thank you but no more of that no I see like I mean really depression went away when I did psychoanalysis and meditated for a couple of years but not in the least against medications I take several to try to adress ME and PoTS and how is it going? well better than without but still a long way to go meaning many medications to try because there is no medical cure for ME and PoTS one has to experiment on one's own like on a trial and error kind of basis it’s called repurposing so that’s what I’m doing with my life right now

Less and no less
fine but not fine
fine like but really fine
fine as can be
can be great but
can also be sad
really sad
sad like sad
I know sad more
and more
I know life more
and more
life were suppost
to be nice but
then xyz happened
more or less life
inside the life raft
which is what exactly
other people?
less other life increases
more inner life
what happens inside
is a ton of things
like an imposition
of notion no other
but the wise can
know of I know
because I read
and I listened its
not so difficult
if one can see
through the bs

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 hosting
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 everyone's shoes that how it goes out of spoons out of shoes out of spoons out of shoes

Lets fork out some times they are 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 no one 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 Djokovic eats celery juice every morning. It is very healthy. If one eats healthy enough and only healthy food for a long time. Let's 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 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?

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 has the privilege 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 at one point of time.

What does this mean then? It means you should care about disability. Even if you are a ”healthy” individual. It means 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 let's 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 has 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 shriek
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 tumbling
after 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
I don’t participate in the changing
of seasons any more

Welcome to the suburbs
it lies close behind the ear
it lies close behind the spruce
behind the juniper
the oak
the pine
the cones
the pine cone needles
behind the door
there is
another door
and a forgotten spin
that spins on and on
we go behind the curtain
a moment more
and then
completely silence

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 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-
gardist but because he lived
in the post-modern era his only
option was to work with
popculture to rip it apart
and I think he succeeded

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 let's help ourselves let's 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

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
monastery situation imagine having a
whole building in tune for one’s pacing
that’s almost utopia for a chronically
ill imagine 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 monastery
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
don't actually know if the doves are sad or
just out of their mind for some reason and
does it even matter at least I care enough
to notice and I don’t eat meat but anyway
I don’t like the taste never have impossible
to swallow I had to pretend eat meat when
I was a kid sometimes like I’m at least
privileged enough to be chronically ill in a
welfare state well what used to be one at
least what little is left of it but let's 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

Usually don’t have fever any more at least there’s that welcome my new feverless life my new bedding my new where I’m heading perhaps same destination as always: want to get better but can’t

Nobody put M.E.
yes 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
we will collectively
smash the patriarchy in pieces
with patient driven initiativs
and everyone gets
a second chance at life
even the perpetrators
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 are 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

I am a little bit
exhausted I mean
a big huge bit exhausted
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
as well my thoughts
negative right now but
I try to dig myself out
of that hole 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 poisoned
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

Work is not enough
it cries in the sky
and rains down as sadness
as whispers
as a bad monologue
I thought I was there up there
but I was down here down
and that’s ok ok ok
cranberry juice I choose
when I want to die
I postpone that everyone
should give me a medal
for surviving this long
I shower I bathe I lie down
cannot even sit in the shower
any more

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 frustrating and and and so so so on on on more than that more than you can even imagen because experience is sometimes 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 necessary something that takes time and doesn’t spell it out directly but lets the reader experience the plot by themselves and with that experience 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

Once I saw that Prince had a show in Gothenburg
but I didn’t have any money to go there and now
it’s been seven years and sixteen days since
Prince OD’d on Oxycontin and I hate the Sackler
family more than ever and

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 breathe
must not strain my
muscles
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 cleaning
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

Lets bake our very
own cake, like
them and us
then it was
eaten and it became
cold and bare and
meager 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 better 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
neuroinflammation 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
tomorrow 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
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

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
when we were alone
meaning I was alone
in there and my eyes
were blurry couldn’t really
see properly I saw some
thing on the other side
of my eye lids that that
had had an impact not
sure not sure sure sure

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 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 prehistoric 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
”CFS” doesn’t exist”
M.E. is more correct to use
this is not a poem
this is civics
it should be common knowledge
especially in med schools
where M.E. is still missing
from the curriculum
that’s not very 2024
”CFS” is a political term invented
by the CDC in the 1980s
to minimize biochemical aspects
of the disease to try to frame it
as psychosomatic because
corruption because capitalism 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
pretends to be
a human?
my thoughts are
a drum machine
from the 80s
without a battery, all
patterns erased
my stomach lacks
certain strains of bacteria entirely
what can we do to
fix this when
everything is about
cash?

I whine to myself when I’m
tired I cannot resist feeling
sorry for myself could you
blame me?
autoimmune like hell
everything is a balloon
everything is therapeutical
if you want it to be
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
and what it’s about some
times words have a way of
finding themselves formulating
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 sunshine
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

Thinking about Seneca
and his coping method to
be able to stay mentally
stable whilst
working as the hand
of Nero the emperor
of Rome
a ruler that could kill
any of his staff and
did so regularly for petty
or not so petty reasons
this extremely volatile
situation led Seneca
to 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 prematurely
as he would already
be dead
just like chronically ill people
that cannot particilate
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)

Generic information on
my kitchen table and
ecological vegetables in my
soup on the stove
I am rewriting every
little thing again
one goes from a paragraph
to a symphony a symphony
of destruction: my own
perhaps post-destruction
is more accurate the waste
land inhabited by myself in my
house of decease

Once upon a time I had a life
so dull and boring and the opposite
it was everything one can dream of meaning
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

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 therefore
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
cool 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”
I will aspire to live after it’s device
(I’m not gonna link to the video because
the interviewer was terrible imo)

right wing extremists
stuck in a bitterness loop
they should quit that religious sect
and be like newborns fucking pure

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

Every day at 12.00 I make a smoothie to stay alive in a way it contains things that support my dysfunctional mitochondria 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 ”succeeding 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 outside of my body it just want to be a little bit more functional 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 harbors
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 ABBA lyrics
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
the glockenspiel plays
I’m unexpectedly lost

No beach on my tongue
I’m still young
but does age matter
when time stands still?
I woke up and opened
the right eye
I can feel the effect of
reactivated virus
all of my dreams encapsulated
in my cells unable to break
free like a tortoise on its back
look a metaphor!

My own brand of PoTS
includes having to lie
down all the time
ALL THE TIME
there are other aspects
of PoTS of others peoples
experience with PoTS
I can only give you mine
that I have to lie down
ALL THE TIME
what happens psychologically
after 1 year horizontal
after 2 years horizontal
PoTS forces me to do
this all alone cognitively
I cannot cope with physical
company in any capacity
I lie down
semi-horizontal daytime
in my couch on the Internet
mostly semi-engaged in
nonsense 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
full transparency I can walk around
a bit in my apartment during the
day to perform the most basic ADL
what’s the power inherent in PoTS?
I think about this every day
unconsciously and I think 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
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
because that’s what the illness
demands of you: EVERYTHING
complete loyalty and complete
submission
of the kind that you find
in equal degree in monasteries
perhaps
I’m not an expert I’m just writing
things off the top of my head
and that head has a
brain damage called brain fog
(yet another symptom of PoTS we could
go all day naming different symptoms)
the debilitation is 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 too 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 and
there’s nowhere you can hide:
no distractions available:
no running away
by facing everything at face value
a certain amount of self-healing is
absolutely necessary

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 portrait 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 its 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 bred to work”
”sleeping is overrated”
”humans are disposable”
therefore
”chronic illness does not exist”
fascism basically
hurry hurry I need some more
art and poetry
about sleeping people quick
before I become disillusioned!

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 André 3000
he outdid us all
although his name
could of course mean
many things
plus I think it matters
if you have the
number before
or after the
name

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

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 newsletter email 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 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 that’s a great start and that’s how this day started despite or thanks to chronic illness and KJR

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
you that much

It’s morning in Sweden
and I am too sick to sit
that sounds like a punk
song: too sick to sit
and too distraught
to 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 I'm still fine but that's not a
point my joint in my finger bruised
autoimmune like hell I lie down and
wait I am a professional waiter i waited
six years for a cure but I met people who
have waited fifty I’m a baby waiter
and there’s beauty in that too after all
I’m talking about me here this is not medical
or therapeutic advice per se I mean
there’s beauty in dying slowly so you
can watch your own body decaying
that kind of beauty I didn’t kill myself
even though MAID suggests it
it's 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 I'm still waiting and that's all
there is to it endurance

Forget sunshine I’m still
in bed still in my bed
I dread everything and that's
ok i haven't lost more than
anyone nothing promises
more then light I go where
chronically ill go every day
its sun in my mind but I’m 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 wasn't
here really here like I mean really
I wasn't it’s not sad if you don't 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

I’m bent between
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
exist as text as
body as far as I
am able so
small so vulnerable
it’s ok its
death and I need
myself and every
one else too