Category Archives: 21st Century Cures Act

The 21st Century Cures Act Hurts My Feelings

mary-pickford-1963155_640

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
I’m a zebra in a world of horses.
Will I tell my story?
Oh, no, what can I say?
I want to.
I don’t want to.
But I will.

Who will listen
anyway?
No one wants to know this.
I think.
It’s boring
doncha know?

Zebras have rare diseases.
Doctors say
If you hear hoof beats
think horses, not zebras.”
Rare diseases say
Think Zebra!
My rare disease
is Common Variable Immunodeficiency
leaving me vulnerable to infections
and sickness.
Subcutaneous Immunoglobulin
is my treatment.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
The political system
IS brutal
and not made for
any special snowflake
or small population
like a rare disease.

A rare disease
a small population
has less political capital
less ability to advocate
just less.
Politics trades off
help some by inadvertently
harming others.
Zebras have less power
a smaller population
take the money from us
to benefit someone else
maybe we’ll just go away
or die quietly.

Anger
sarcasm
self pity
blame
blame who?
blame me
blame them
lawyers
politicians
policy people
unseen others
and their ilk.

<oh, sigh>
<oh, my>

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
Cuts the pay for my treatment
below the cost of the treatment
forcing pharmacies
into crisis
requiring big decisions:
hurt their bottom line
or refuse our medicines.

Having rare diseases
hurts my spirit.
It doesn’t feel special
or unique.
I’m a special snowflake
and I need proper care.
I’m a zebra in a world
of horses.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
I don’t want to
ask for more
and different.
I don’t want to
say, “you just don’t understand.”
Hot burning shame
hiding my face
in embarrassment
telling people
I need this
Please help.

Being a special snowflake
is not my decision
not my want
not my desire
it just is.
Illness isn’t me
It is not who I am
except
illness defines my life
no matter what I do.

I lose myself
in the structure of days
spent taking care of this body
Eating on time
bathing on time
doing this rinse
and that rinse
doing this treatment
that treatment
figure out a schedule
that lets me go out of the house
and let me live a little
bit more richly today.

I’m a free spirit
trapped in routine
discipline
order
and self-care
all demanding
I be someone I’m not.

I want to tell my story
but I don’t want you to see my pain.
I want to tell my story
but I don’t want you to feel my sorrow.
I want to tell my story
but I don’t want you to know my anger.

Most of all I don’t want me to know.
Let me pretend
avoid
deny
and live in rainbows
unicorns
glitter
clouds
flowers
balloons
and
laughter.

I want to tell my story.
I know things
analyze and hypothesize
I have something to share.
I’ve been at this a long time
I have something to say
There is insight to provide
Insight that grew out
of years of suffering.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
Will anyone listen?
Will anyone listen
in Washington?
Does anyone
really care?