Leili Anassori is a gifted writer and poet who has never been very public with her work. That shifted Thursday, May 4th when the house passed the measure to repeal and replace the Affordable Care Act. This will have a direct impact on her life as she is disabled by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Dysautonomia. She has bravely agreed to share her words in an attempt to shed light on her experience as well as those of millions of other Americans like her.
So many people in Leili’s position are struggling to find their voices and to pinpoint the right words to articulate their experience. We hope they will see these words as their own. We hope these words put a face and a feeling to the impact our decisions will have on our fellow citizens with disabilities and pre-existing health conditions.
It’s shocking how similar it feels
to be abandoned by your country,
as by a parent.
It aches in the same deep, foundation-shaking way
to realize how easily
those charged to lead and protect you
can turn their back
when you become inconvenient.
In your first one hundred days
you have steadfastly endeavored to take from the least of us,
though you garnered thousands upon thousands of votes
as the self-proclaimed upholders of Christianity.
What kind of mental and moral gymnastics
allow you to rest your head peacefully?
I cannot blame the father
who believed you’d bring back his job
so that he could provide for his family.
I cannot blame the new citizen,
who practices her religion with devotion,
when she believed her turn-coat pastor
as he paraded the very men and women who will worsen her lot
as the Godly choice.
But I do blame you,
who the people have entrusted with power and duty,
for abandoning me.
Do you realize the line on your budget sheet,
that you cross off so easily,
amounts to years of my life spent suffering,
without treatment or cure
or ability to contribute to my community?
There are millions like me.
What did we do to deserve your loathing,
Easier to label us bad or lazy
than to acknowledge the harsh reality
that sometimes life can lay you flat,
despite doing all the right things.
Sometimes circumstance has removed your bootstraps,
and your boots,
and your feet,
so you look to the society to which you have belonged,
contributed and pledged loyalty,
and with no other choice,
ask to be carried.
But you, the sworn in guardians of this great nation,
have drawn a line through me.
You vote against—
the healthcare that can sustain me,
the science that can cure me,
the social security that is my only livelihood,
my chance at a life of dignity.
You have traded me
for an extra bag of coin,
piled on top of the mountains already held
by a handful of glutinous kings.
For the favor of the powerful few,
you have sacrificed me
You have abandoned the millions like me—
the least of your countrymen with the greatest of need.
You have shamed the heart and soul of this country.
That will be your legacy.
Do you want to know the saddest thing?
You have laid out your colors so clearly,
but the foolish child inside
still hopes you will change course
and come back for me.
The adult knows my best chance isn’t with you, but with we.
This is still democracy.
Even you must yield to the will of the many
if they choose to stand for me.