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FARAFARA Cure FA

Methodically Falling Prey

Dear readers,

My first poem was one I wrote in kindergarten about fireflies. As an adult, I am still writing, although my subject matter has evolved beyond insects! I am truly in love with words and with weaving them together to create beauty, appreciation, poignancy, and depth. I do not write for myself; I find peace and value in sharing my love of words with others. Most of my poetry is about my family, and I have actually never previously written about FA. The experience, in itself, was beautiful, in that the words poured from me. Even though FA makes typing difficult, I will not stop sharing. Please enjoy!

Robbi

 

Inspired by my fellow FARA Ambassadors Dedicated to Becca Van Schoick

 

Methodically Falling Prey

A new day breaks The endless fight begins again We have no choice in the matter Alas, we have never had a choice

We never see the sunrise

As we are always asleep Or longing for sleep, yearning to fall Cruel is the irony that reduces our energy Beats the life out of it Yet, still, will not allow us to drift easily and naturally to sleep No, not for all of us Only some

We need every morsel of sleep we can consume Every second of rest, of reprise Of peace for our fatigued bodies Like a hearty, home-cooked meal for a manual laborer And we need the restorative food for our souls, alike In order to meet the strains of the new day Demands of the body And challenges of the spirit Relentless destruction that becomes subtly worse over time

More than simply "Our fingers won't do this" or "Our legs won't do that" Deeper, more insidious than meets the eye Our lives are not what we had hoped The summation after time goes by Of assessing the collective damage After years of doing the best we can and making the most of what we have Trying to find beauty in losing independence

Of doctors who cannot stop the disease They can only treat the symptoms And observe the gradual, creeping destruction Our bodies fall prey to this slow-moving predator

The ravenous yet unhurried beast we call Friedreich's Ataxia.

 

Robbi

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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