A Poem of Hope for Carefree Disability

Casey-Lee Flood

Dedication

This is a poem dedicated to my husband and our relationship.

As the med list grows

And my hope fades

I wake up again feeling lost and afraid.

I want you to know,

from down in my soul.

I wish there was another way

A way I’m not a burden,

or in bed 1/2 the day.

A way that I’m thriving and playing in our garden.

Please do no leave me, I want you to stay,

I am hoping tomorrow will be different for me.

That pain will not keep me from being free.

Some say I gotta just try harder,

yoga cured their brother.

While gluten poisoned their friend.

While they lecture me, on my disability, I feel there is no end.

They blame me for being chronically ill.

They say I am sheep for taking the pills

If they only knew what my smile doesn’t show.

That all their words push me farther away.

Making it that I cant show how much I did grow.

That I don’t want them to pray my disability away.

I love my disabled body, her scars, strength and beauty.

Society bases my worth on how much I can do

Never mind if I am happy, lonely, or sad.

If I can keep just pulling through.

They forget what It means to be disabled in the US of A.

I am my own therapist, advocate, case manager,

nurse, doctor, PR and my own nutritionist too.

The work for me never ends

Even if it makes me sicker, It is something I must do

Even when these obligations makes me a shitty friend.

Capitalism makes sure I will never see this work’s end

I want you to know,

from down in my soul.

I wish there was another way.

A way that I am happy wild and free

Where disability isn’t a dirty word, filled with shame and pity

Living in a society that doesn’t try to change me
Where I can express the beauty and pain of my disability

Where Meds aren’t shamed.

People aren’t blamed.

What else can I say? I am sorry, that I am not wild and free.

This world is not yet set up for carefree disability.

Please know that I love you and all that you do.

Even on the days I don’t know if I will pull through.

I know that you love me, and I have to make it,

if it’s the last thing I do.

If not for me but for you.

I want you to know,

that down in my soul.

I am grateful for each and every day.

Even when I hurt from my head to my toes.

I only want another way if I still have you

and we can both see it through.

To the wild and carefree Disability days.

Hello,

I’m Casey-Lee

I have been an RN for over 14 years and have lived with chronic illness since 2019. While I have always fiercely advocated for my patients, I struggled to do the same for myself. I had to radically change how I viewed the medical system, adjust my expectations, and unlearn my tendencies toward people-pleasing.

Recognizing the challenges of self-advocacy inspired me to create this platform. The “radical” aspect is that we acknowledge the many systemic and personal factors that impact our community.

Many people experience multiple intersecting identities that create barriers to care. Such as being a person of color and disabled, a woman and disabled, or queer and disabled. Each requires unique approaches to self-advocacy.

Our resource hub will continually evolve to meet the changing needs of our community. I hope this space nourishes, empowers and provides practical tools for navigating healthcare as an advocate for yourself and others.

RadicalRNAdvocate