This wearable art project about Long Covid is finally finished and filmed (thanks to Taliesin River!) It's also available to see on Instagram if you like, in a different format: https://www.instagram.com/p/C5R9o3ZxVmP/
Thank you SO much to the hundreds of people who participated, who shared this journey and who have held my heart as I worked on this. It has been my huge honour to represent you all in this way; to create something that can speak for us.
(dis)robe: Hospital Gown will be performed and displayed at the Art Vancouver fair, April 11-14, 2024.
(To see full-screen video, click "YouTube" when it begins playing, and watch on YouTube.)
Text of the poem from the video (Emily van Lidth de Jeude):
It's Not Over
from behind the windshield
waiting for my blood-test
I see you getting back to normal
walking on the sidewalk like
it’s easy
because Covid is over
telling me
don’t worry
it’s safe now
just get some exercise
you’ll feel better stop masking
because covid is over
and you don’t see
that behind my mask I’m masking
my disability
because now my normal is different than yours
and the Covid is not over
when I walk the blood
pools in my legs and my lungs constrict
and the pox come back the shingles
and the screaming lungs
hold fluid exhaust me
and the world becomes blurry
I can’t see
you anymore because my mind is blurrier than the windshield
but it’s not over when I get home I will stop masking
what I’m living with collapse shake
never mind the bone-ache
I will treat my fever and sleep
for a week
and it won’t be over
but now, because a blood-test means hope
with a hand on my back he walks me to the lab
he took the day off work to drive me here
I long to work again just walk even
to feel valuable
but I don’t tell him that
because his burden is already
too much
in the morning he rolls me
presses pillows under me
and pulls underpants onto my feet
so I can reach them he strokes my hair
and brings me food and asks
if I’m OK
and I say better
than yesterday
because
I’m afraid of his fear
and it’s ironic consolation
that I’m one of many millions
that my small adventure
today to the lab
is not even possible for so many of us
for whom Covid
is not over
and four years of doctors wringing hands telling us
there’s nothing they can do and we should learn to
pace
maybe we just have asthma or anxiety
maybe we’re just sensitive
or lazy
and it never ends
and it’s not over
we keep persisting
go for more tests
visit more specialists
explain to more family
it’s not over
but we keep persisting
and in moments of despair
looking out from the pall
we quietly tell other long-haulers
because they’ll understand we wish
it was over
and in silence
with blurred vision
and shaking hands
we hold each other up
by the hundreds and thousands
by the millions
we keep persisting
it’s not over
I see you getting back to normal
walking on the sidewalk like
it’s easy
because Covid is over
telling me
don’t worry
it’s safe now
just get some exercise
you’ll feel better stop masking
because covid is over
and you don’t see
that behind my mask I’m masking
my disability
because now my normal is different than yours
and the Covid is not over
when I walk the blood
pools in my legs and my lungs constrict
and the pox come back the shingles
and the screaming lungs
hold fluid exhaust me
and the world becomes blurry
I can’t see
you anymore because my mind is blurrier than the windshield
but it’s not over when I get home I will stop masking
what I’m living with collapse shake
never mind the bone-ache
I will treat my fever and sleep
for a week
and it won’t be over
but now, because a blood-test means hope
with a hand on my back he walks me to the lab
he took the day off work to drive me here
I long to work again just walk even
to feel valuable
but I don’t tell him that
because his burden is already
too much
in the morning he rolls me
presses pillows under me
and pulls underpants onto my feet
so I can reach them he strokes my hair
and brings me food and asks
if I’m OK
and I say better
than yesterday
because
I’m afraid of his fear
and it’s ironic consolation
that I’m one of many millions
that my small adventure
today to the lab
is not even possible for so many of us
for whom Covid
is not over
and four years of doctors wringing hands telling us
there’s nothing they can do and we should learn to
pace
maybe we just have asthma or anxiety
maybe we’re just sensitive
or lazy
and it never ends
and it’s not over
we keep persisting
go for more tests
visit more specialists
explain to more family
it’s not over
but we keep persisting
and in moments of despair
looking out from the pall
we quietly tell other long-haulers
because they’ll understand we wish
it was over
and in silence
with blurred vision
and shaking hands
we hold each other up
by the hundreds and thousands
by the millions
we keep persisting
it’s not over
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