Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Lily Pierce

My name is Lily Pierce. I'm 21 years old, and I reside in Greensboro, North Carolina. I've been living with the diagnosis of Friedreich's Ataxia for five years now. I have a disability, but I am enabled by the strength, ambition, and voice I've gained in having FA.
 
I can claim to be strong now, but none of us is innately built to endure a burden like FA—it's physical, it's emotional. It'll put you on your ass (literally and figuratively), and as you cradle your now injured knee or ankle, either fighting your tears or bitterly yielding to your vulnerability, feeling like the smallest person in the world, your will—your strength—is tested. But the fire by which we are tested transfers to our souls, and our determination can't be extinguished. Every FA person I've met glows from the inside out with that light and that warmth, a flickering flame of hope that persists in the dark uncertainty of our circumstances.
 
My own FA journey logistically resembles many others. I first began exhibiting symptoms at age 11, walking a little clumsily. The walking defect grew more noticeable and other parts of my body, like my coordination and speech, began to gradually change also. My parents and I sought answers and remedies in every corner—I even saw a massage therapist for a few months. I can't recall the numerous doctors and other professionals who were left scratching their heads. When I was sixteen years old, my dad finally pulled out the big guns and scheduled me for a three-day-long series of medical tests at the world renowned Mayo Clinic, where I received my diagnosis. Knowing is better than not, but at that age and that phase of my life, I didn't want to go to the appointment. I wanted to rip up the appointment confirmation slip and throw it in the trash along with these mysterious health issues I was too young and too afraid to face.
 
I walked without assistance through my sophomore year of college at UNC-Greensboro. I was enjoying my unassisted days while they lasted, and though everyone thought I was wasted at parties and I didn't correct them, I saw nothing wrong with my psyche. Despite how anxious I felt going anywhere or doing anything without a friend to potentially grab for help, I didn't consider myself weak anymore. But my personality truly blossomed when I began using a walker two years ago. I couldn't pretend to be drunk anymore. Everything was out in the open. With this piece of equipment incorporated into my identity, something strange happened—I actually stopped fearing judgment, and instead, I became proud of myself, my life's journey, and even my disability. It seems ironic that needing more assistance has made me stronger, but it's really the same irony that allows an abled person to feel inspired by a person with a disability; strength is not always literal.
 
I am who I am. I have Friedreich's Ataxia. I also major in English, work out with a trainer, and attend my church regularly. I'm also obsessed with rock music, makeup, and 'intellectual' topics. I'm kind, impatient, articulate, indecisive, competitive, confident, and sometimes crude. I am strong. FA is a part of me that has and will greatly influence my life, but I can acknowledge and even embrace this as just another piece of the puzzle named Lily. That past was a b***h, but I've gained priceless wisdom through Friedreich's Ataxia.
 
“She is clothed in strength and dignity; she can laugh at the days to come.” -Proverbs 31:25. As I work with my fellow FA'ers in the Ambassador Program this year, I hope to share laughter and life with others, and as we wait for a cure, we shine a light for others.
 

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.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
Event H.jpg