A post shared by Leili Anassori (@leilipoetry) on May 6, 2017 at 9:52am PDT

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My name is Sarah Anassori, and I am the sister of Leili Anassori—a young woman who has been disabled by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and dysautonomia, triggered by a Lyme disease infection. She is 28 and has been ill since she was 22 years old.

Leili has always been a gifted writer, but is quite private about her illness. Given the current direction of healthcare reform, Leili was moved to write this piece and use her words to shed light on her experience and the experience of millions of other Americans like her. Her hope is not to direct attention to herself, but to allow her words to be available to anyone who can use them for a positive cause.

I know 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.

There are also so many great activists who are constantly trying to bring a level of humanness back into this constant tug-of-war. We hope these great leaders, from the mother on Facebook to our representatives in Congress, may also use these words to put a face and a feeling to their missions, and to better connect people with the true impact our decisions will have on our fellow citizens with disabilities and pre-existing health conditions.

We share her words below in the hopes that they will reach the people they are meant for.

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Abandoned

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 100 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,
or worse,
your apathy?

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 coins
piled on top of the mountains already held
by a handful of gluttonous kings.
For the favor of the powerful few
you have sacrificed me
so easily.

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 in me knows my best chance isn’t with you,
but with we.
This is still a democracy.
Even you must yield to the will of the many
if they choose to stand for me.

 

Relephant:

If you’ve been through any one of these 4 things, you won’t be able to get healthcare under a new plan with AHCA, the Republican’s healthcare act repealing Obamacare.

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Author: Leili Anassori
Image: Author’s Own; @waylonlewis/Instagram
Editor: Nicole Cameron