OUR JOURNEYS

Creative Expressions: Creative Writing

Jode Cox


Jode wrote this poem in 2009, the year she was diagnosed with PH.

This Hill

The road keeps getting longer
The farther that I walk
A headwind seems to push me back
I don’t have the breath to talk

My lungs they burn, my heart it pounds
My throat is getting dry
I see a looming hill ahead
And now I want to cry

To you this hill may seem small
To me it is a mountain
I don’t want to ask for help
I keep going as fast as I can

I slow with every footstep
Until I have to stop
I find a way to busy myself
To pretend there is nothing wrong

To admit this trouble to you
Is to admit it to myself
I don’t want to ask of others
I want to do this by myself

I feel this is all my fault
If only I could heal
The shame I feel at every gasp
This journey has become too real

If only I was stronger
This disease I could have fought
It silently crept up to me
The illness I don’t want

Each day I am able to do less
No matter how hard I try
For now I can only do my best
You don’t even understand why

I used to run and jump and play
Nothing too hard to do
Now the smallest task I take
I must ask for help from you

You think I don’t see the resentment
The bitterness in your face
You think I choose to be sick
To give up my life in this place

This hill is not enormous
The one you gave to me
I will make it to the top
I will do it just for me

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.