Wings of Hope
My name is Esther Stephen.
I exist with a great reason:
To use my lightweight wings
And soar o’er what life brings -
That I may use my experience
To help others.
My journey is a long story
Of pain, triumph and glory.
As I began this trek, I was extremely sick.
I could not stand; I was like a worm.
I suffered at the hands of rare diseases.
I could not take light, sound and vibration.
I stayed within the dark isolation -
In my bed, because all of those triggers
Caused migraines, paralysis and seizures.
I felt like I was torn
From head to toe…
Such was the pain
Inside my bones and out.
But I was blamed,
‘Cause most don’t know
What this journey is about.
They scoffed at me,
And as I cried,
They simply lied
That I was just a fool.
I asked for help, but they kicked me out
After observing me with such great doubt.
Yet my family, so full of love,
Encouraged me to soar above
These many types of rare diseases,
Which kept me from enjoying the breezes
Of everyday laughter - normal life.
We know that I will fly!
I often struggle much to breathe.
There are many days I can’t speak.
I cannot eat what most humans can.
Oh, it is such a prison
Which only few understand!
Still, I know that I will fly!
So, I inch through each stage of my journey,
With great faith that we will see victory.
I know I will one day soar way above
The rare diseases which have kept me bound.
From a wormlike creature on the ground,
To a large butterfly who flies around -
Calling to those in despair:
“Come with me, you too can fly!”
Artist’s Statement
“Wings of Hope” reflects my journey living with multiple rare diseases and my mission to bring hope to others facing similar challenges. After years of being misunderstood, misdiagnosed, and mistreated, I finally received accurate diagnoses from leading specialists. Living with a severe form of Hemiplegic Migraine, rare seizures, Scleroderma, Mast Cell Activation Syndrome, and other serious conditions inspired me to found But I Fly Innovations, a nonprofit dedicated to rare disease research, education, advocacy, and awareness.
The butterfly in this poem symbolizes myself, as well as other rare disease patients who choose to focus on successful treatment and recovery. My goal is to encourage patients and families to never give up and to remind them that no one should face this journey alone.
Creating this poem was a milestone. Because of my health, I could not type or look at a computer screen. So, I voice-recorded the poem and directed my younger brother in editing the transcription. Despite severe pain, fatigue, brain fog, recent seizures, and breathing difficulties, I completed my first poem after so long. This work is a testament to faith, perseverance, and the belief that even in life's greatest challenges, hope can still take flight.