content warning
reflections on pain
emotional difficulty
medical issues
unsurety

intentions
be witnessed
share my story
insight into my daily life

tone
open / honest / plain
frank / direct / sincere
confused / pained / agony
curious / wondering
grateful

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

series
listening to td-death
4

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

–four days from the week of five may twothousandtwentyfive

i am doing great
i am doing the best i ever have
it is because of this that my body pain is so clear
i finally have enough emotional space to listen to my body

it is good for me to remind myself of this
out loud
when people ask how im doing
the answer is
actually
im great
actually

the more i talk out loud about my problems
the more overwhelming they become

i write so that i have an emotionally safe container to face my problems
and
then
put them down
pick up the positive
again

to not remind myself
i am doing great
is to lose myself

to not remember
every painful step
is a sign
i am on the path of the universe
is a step
in courageous trust of my journey
is a joy
to know i am doing exactly as i must to heal
is to drown

in the sea of pain
gratitude buoys me
so i may walk on the waters

i acknowledge
all of this may seem alarming / sudden / concerning / urgent
there is no rush

i have dealt with far worse in my time
this is just different
sometimes i just forget
how strong i am
and
i feel weak

so
i do not talk about my problems
i write about them

it must be acknowledged
my body knows this better than i
this is my body protecting me

if i speak out of turn
out of truth
out of time / space / place

i lose my body
disembody / disassociate / disregulate
this is worse than the alternative
when i speak without a body
only pain is a result
to others
to myself
this can be incredibly isolating
¿ how am i to get help if i cannot speak ?
i write

¿ how am i to get help if i cannot show my pain ?
¿ how are people to believe me if the ways they know are so different than mine ?

i went to the doctor
he followed his procedures
i left far worse than i came
in agony
the results of standard ways of treatment
he did not know what to do with a patient who calmly wrote they were in a nine out of ten pain
it is not his fault
and
a person at a nine out of ten pain does not have energy
to enforce boundaries
to say no
to advocate their needs
to defy the norms of an entire society
merely to receive care / help / love
in a way that meets my needs
in a way that loves me as i am

and
yet
i must learn how
or
i will not make it through

for the time being
we are making it easier
holistic health care team

[ two days after i wrote the above
i was sent an article by a neurodivergent specialist
selective mutism in autistic adults
exactly the validation i needed
thanks universe / friend / drew ]

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

¿ what is wrong ?

nothing
everything

i am in great health at my checkups
clean bloodwork
amazing blood pressure
nothing they can notice

my body is finally coming online
from a babyhood of trauma

that is a long time for damage to build
when all of my joints / ligaments / connectives do not work in the ways they are expected
pain holds lessons / signals
just as any other feelings
pain / feeling is beneficial / necessary
without pain
we would die

a hand on a hot stove
burning
with no message to tell the brain to stop
until the nose smells burning flesh
and
what if there are many more meats cooking
harder still
thirty years
is a long time
to leave a hand on a stove

so
this is what i mean
when i say the pain has always been there
my body was always burning
i have finally smelled it
i have finally lifted my hand from the stove

[ one of my hunches
ehler danlos syndrome ]

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

if i pressure people
get angry at them
demand help / anything / love
i will push them away
so
i try
each day
to make peace
with the end of this mortal human body
it is just star stuff after all
just
alive
in a new way
probably with a lot less pain

life is great :)
no rush
no expectation
no obligation

i am doing the best i ever have.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

i am dying
my insides are eating me
each day
is a little harder than the last
each day
i try to grow strong enough
to handle it

it would be easier if i had cancer
at least it would have a name you can understand
treat me like i have cancer
please
i do not have much time

this human mind
would prefer
this human body
remain human

i need a lot of help
if i am to remain human

if i give too much to any one person
they will buckle
they will break
they will be gone
this is my burden to carry
my life

i am strong enough
and
it is very hard
and
i am very tired

–four days from the week of five may twothousandtwentyfive