I was told I have an energy limiting disorder and an autonomic
nervous system disorder—basically my fight or flight response never turns off and hasn’t since I was
19, maybe even before then. Did
you know your nervous system is
responsible for eating, breathing,
resting, and digesting? Yeah mine
doesn’t work so instead it’s always
ducking, dodging, fighting, freezing, and fleeing.
These systems steal your energy. Your energy is your life force. It
steals it while also scraping away at
the bits of your psyche left, without
any remediation. Fuck all of these
systems.
Where the fuck do we go
for peace? I have looked people
straight in the eyes all my life while
being called slurs and being told
my life didn’t matter, but I didn’t
care because I wasn’t dependent
on them for my livelihood. At the
peak of my medical travesty—as I
am continuously grasping onto life
that is not a life and a life that is
not promised for the next hour—I
am being told by twenty doctors
that my life really DOESN’T matter.
So who is gonna save me when I
cannot save myself anymore?
Funny that we can keep records
and records on families but doctors
still fail to diagnose a very simple
nervous system disorder for over
twelve years.
I have only found encouragement from other disabled people who find new ways to support
without extraction and without
expectation beyond reciprocation.
It’s because we know we are always
in a time of need. Always. And this
is where we have got it wrong in
society. We expect people to have
needs for a week max and that the
support systems will save us otherwise. Non-disabled community has
opted out of community for capitalism’s sake.
What do you say to someone
with no community to rely on?
Where is home when we can-
not feel safe in our own flesh and
bones? When we can feel poison
in our bodies, but no one else can?
When the world needs to “see” to
believe but then fails to look at
you? Where can we feel safe in our
own bodies? White people made
“brave spaces” and “safe spaces” all
to keep opting into the same harmful shit that kills us. Fuck you.
People don’t know what to do
with human suffering so they ignore it. Even those who are supposed to be doing that “good”
work. How do you scream “this is
what community looks like” while
unmasked, spewing COVID venom
all over your comrades, potentially
causing them permanent disability? Y’all can have that.
Legacies of eugenics. Hospitals
filled with police on top of stolen
land. Doctors saying, “Your labs
look okay.” These fuel my nightmares. My body is a source of labor
and relational extraction. My body
wants healing. Chasm.
I’m seeing a therapist now. My
trauma comes from every source
like how light refracts. My triggers
at this point include existing. Now I
have to slowly undo the chains that
are tying me down for a rate of $150
a month on Talkspace.
—Victoria Copeland
Thu, Jul 20 at 4:09 PM
Hey Khadijah to be transparent I have not been able
to work on the logics interview due to health and just
fucked up home shit. Was hoping to do it when I get to
Vegas next week. I’m not sure what to respond with via
email about the word count
(I also hope you’re doing better!! I should’ve started with that my b.)
Fri, Jul 21 at 7:24 PM
heyyy i have been through the most traumatizing series
of hospitalizations and unspeakable pain since July 4
that #relatable
I want to leave space for you to simply not do this at all
if you just don’t feel the spoons but i also want to say if
you want to do some very short commentary that’s like
1k or less words that would also be amazing
I think I can make that work yes! I really need the $ and
I was actually so excited to get to publish in the mag But
uhm are you ok? Out of the hospital?? I mean “ok” as in
not dying but I know you’re probably not okay
like i just want your life in here and i think you know not
on no extraction shit but you the real
Thank you that really means so much
…imho this was the most traumatizing thing i ever went
through in my adult life for no reason and it wasn’t even
my own health that was traumatizing, but the shit i saw
fam and lived through in these hospitals was…so meditate on it, if we get to the finish line and you ain’t gave
me shit it’s all good, you set up as a vendor and when the
feeling hits we can pay you for another issue
but if you have some shit that hit you at 3 am send that
raw, like i wanted it before but after what i just survived
i need all the crippleds in here!
Really same. Like I was def disabled before and
knew shit was bad always but FUCCCCK some
situations really hit different
And okay I won’t. This has been helpful
to hear! So I appreciate it
but just don’t let it stress you, promise
at one place they had my face next to some kind of
psych ward cop thing. it was so triggering i was left in
pain for 15 hours writhing and then watching kids like
me being dragged into this room by cops and carted
out in a stretcher unconscious
YEAHHHH I BEEN IN THAT SAME POSITION one of these
bitch ass hospitals forced me to use to bathroom in
the psych prison and oh my fucking gawd!!!!!
That’s so fucking terrible. The hospitals trigger me
so much now. They’re really fucking terrible places. 1 haaaaate doctors
Just all of it. Throw it away no one
should be subjected to them
but especially the sick! They were def made for
“healthy people” who have a sniffle cuz ain’t no
way. Ain’t no fucking way
My partner is not emotional and not a crier and I never
seen this man cry so much after experiencing the hospitals with me
yeah my partner has been really driven to the emotional
edge by this and he’s very cool headed compared to me
but i left AMA last night after they encircled him with
police to get me out.
The hospitals are so heavily policed!!!!!!
That’s so fucked up
Idk man it’s so heavy. The trauma from it
just hits different
And they will never be held accountable
as someone who grew up institutionalized this was literally like re-living institutionalization.
I cannot even fathom how much that made you feel.
I just want to go homeeeeee
and people have to literally just deal with it cuz there’s
nothing systemically better right now.
America is a fucking nightmare
the levels of relief I feel when i’m not here
I really wish I could not exist here haha like my
friend in India’s care is superb. Not perfect but
so much better and she’s healed so much. Even
friends in Berlin are doing better
America is a fucking NIGHTMARE it’s a death sentence
India is antiblack AF butttt you basically can get whatever you need if you pay for it and for american dollars
you can afford everything also just nowhere is the same
with this policing shit.
Yeah here you get the anti blackness, police, a heavy bill,
fucked up insurance bs, and no adequate treatment LMAO
Like so I’m just paying hundreds of dollars for trauma? ok
Yesterday 2:29 PM
i hate my rollator. I also learned that i hate acupuncture which made the pain worse.
I’m soooo sorry. Lol I miss my Walker so much highkey
I be wanting to jump off this bed so much.hope those
injections relieve some of the pain cuz damn.
we’re trying to buy a farm and just escape in
all seriousness and this was before i got sick
leaving america and coming back, it’s like omg get me
out of here, immediately. the antiblackness is so unhinged even how high yellow i am
Its fucked up bitch now you trapped in your body and
the US. lmaoo
plus i got this arabic name i’m cursed here
They really hate you Imaoooo you have to change your
name to Katy Abrams НА
you know this could be the interview we could just
publish this exchange lol
because i want this chronically ill reality to be in the world
and i also have a fraught relationship with disability studies and organizing; and, also the academy is making everyone sick but we don’t know no doctors. i know a million
academics and not a single doctor, some bullshit
I’m sitting here with an ice pack on my heart bc I refuse to
believe I’m having a heart attack. I don’t wanna go to the ER
because the ER here has hella police and is where they make me
use the psych prison bathroom amongst other traumaatic shit
that has happened there. AND im stressed because the air ambulance company needs $40,000 by TODAY and I just got that in
loans but the bank won’t let me wire it unless I go to the branch
in person (how sway) So yeah fuck this LMAO
the “you can only come in person thing” is wild when
meanwhile these institutions are so flexible when it
comes to getting their bread. But when it’s a life or
death emergency and you need to be airlifted you need
to get off your death bed to go to a brick and mortar
branch. it would be funny if it wasn’t real.
LITERALLY. And when I have my mom call who is my
power of attorney they always want my vocal consent. I
HATE it here. I’m tired.
also being sick is so boring and exhausting at the same
time. I just want to go about my life.
It is literally the most boring fucked up shit. I’m so tired
of being tired. And my mind still works that’s what’s
fucked up НАНАНА.
and the idea that doctors have that anyone would make
up symptoms to be in their shithole countries (which is
what these hospitals are) is so amazing to me, like have
y’all been to a hospital?
LITERALLLLLLLY! Why the FUCK would I want to make
shit shit up fam. You don’t want me here, I DON’T want
me here. Let’s help each other out.
EXACTLY. Now that they took me off of what was basically medical grade heroin, I have my brain back. No
one explained to me what dilaudid was before placing
me on a dilaudid pca machine (patient controlled analgesia pump).
that is so crazy. Wtf is going on with your back? and re:
dilaudid oh hell yeah absolutely not, though you were
def in hella pain.
no one has any answers for me, they just keep saying I
need to find a super neurologist. lol where they at?
Omg I hate neurology. Tbh the worst specialists. In my
experience haha. Lol they’re always like “wow you’re
sick did you go to the hospital”. Like yes bitch they
sent me to you and l’d like to get off this ride so…
twinsies. how do we get off this ride? if these facet
injections work, I at least can function a bit for 3 weeks
as that’s how long they worked last time. but it doesn’t
resolve any other symptoms that seems to be getting
worse each day. and the most i get from these doctors
is “damn you look sick”. or “you’re perfectly fine” as if
i have always been in a walker, had difficulty seeing and
legs swollen with fluid plus bruising everywhere. anyway
dif than your situation but same dynamic i’m trying to
crack the code because this is not life.
Yeah I’m glad they give you some reprieve cuz non
stop pain is literally so fucking terrible . But I just don’t
understand the refusal to look for root causes. Doctors
just never want to be wrong or have too much ego to
admit when they don’t know. But if they do admit it,
then they are too scared to try to figure it out bc of liability. It makes it more frustrating that the doctors here
refuse to talk to each other or look at the entire body.
Academia is so fucking gross for creating disciplines and
then literally having insane tunnel vision be of it.
what i find funny is that basically every doctor in the
last hospital was indian or pakistani and all the patients
were black and dominican or puerto rican—south asia
managing our social death.
Honestly that’s triggering. Exactly, There’s nothing
worse than watching other black people suffer with you
also suffering
It really does something to you
it really does my ptsd is on fleek. for the first time in
my adult life i feel like i relived residential school, esp
at mount sinai where cops kept dragging black autistic
people into the psych ward for just doing odd things
like stacking ice cups but not bothering nobody
Omggggg that’s supposed to be such a good hospital too.
I had to leave Johns Hopkins emergency room because
it was sooooo bad. Ppl bleeding out and screaming. All
black people. Wait was 24hours…Then you get to go
home still sick and literally just thinking about mass suffering. But #wehopeyoufeelbetter.
the level of compassion white people receive juxtaposed to our disposability is too much. like put it on
another floor at least so at least i don’t have to see it.
Idk why they think we don’t want to live our regular
peaceful lives. All black ppl want is peace like ????
the racial politics of hospitals is off the chains tho esp
when i compare it to the profound validation i feel with
indigenous black healers in africa. across the board—
whatever their limitations— you feel validated, loved
and your family/ friends are welcome.
It’s really that easy to feel cared for.
there’s no police at all, like it doesn’t exist in their epistemological universe .
It’s such an American ass concept. Unsurprising as fuck
bc everything that touches academia/the university
here is rotten as fuck
this country is seriously fucked i’m also eating shit here,
we eat fresh food all day long, like default back home
You will die off the food here alone. And fresh food
here is expensive as fuck. And no one teaches you
how to farm. But also the soil is fucked bc America is
fucked. Hate it lmao just hate it
Also the way they treat farmers here.
Throw it all away!!!!!
…It really is crazy how disability at this level bends
time. Like days go by so slow but so fast. Deadlines are
apparent but also mean nothing. Urgency is something
completely different bc you have to be hyper focused
on your body to make sure you’re not immediately
dying without being hyper focused on your body to
the point you’re constantly surrounded by the thought
of pain and grief idk. Disabled people time travel, it’s
super heavy tho.
^^^this is super real and i have so much thoughts on
this because we be time traveling, so do people using
substances and they hate us all, they want us to be on
white segmented time which is killing us. but i have to
eat right now so imma circle back to you fam i love you
so so so much.
Absolutely. I love you so much.
and this sucks and i love that you are as hateful of this
shit as i am because i hate it here
Solidarity HAHAH. Now eat and rest.
