At twenty-three, Yesenia Ramos from Edmond, Oklahoma, reflects on her life with Friedreich’s Ataxia (FA), a condition she was diagnosed with at the tender age of six. Her Mexican heritage is a significant source of pride, and she lives with her supportive parents and an older brother who also has FA.
Yesenia’s path to diagnosis was marked by frequent sprained ankles and a persistent sense of unbalance, symptoms her parents recognized from their experience with her brother. Though the early memories are faint for Yesenia, she vividly recalls the progressive impact of FA, which she feels has stolen much of her childhood and teenage years.
Despite these challenges, Yesenia has channeled her experiences into poetry. Her published book, *Emotionally Deteriorating, Emotionally Distressing: Who I Am With FA*, is available on Amazon. Poetry has become a therapeutic and expressive outlet for her, allowing her to share her journey and raise awareness about FA.
In her poem “Sick At Heart,” Yesenia poignantly describes the emotional and physical burdens of living with FA:
*FA is all that I am anymore
all I have to offer people is a big ball of symptoms
I am as burdening as a nonstop war
my life is a sore, truthfully
I take everything with hurt on the side
it’s outrageous
I’m truly empathetic
FA also makes me less “useful”
like an imitation of a drunk with the awareness of a hawk
I’m learning to accept my limitations
but I’m struggling with accepting the reality of my limited life and brutal future
16 years later and the only thing that’s changed is my emotional tumor
It’s so easy to feel like a bad friend for needing more help than others
its as if my reality was abruptly full of highly sensitive ulcers
no one teaches you how to grieve the life you should have had
Friedreich’s ataxia defines me
it’s literally all over my DNA
it makes me sick at heart*
Yesenia also maintains a poetry page on Facebook, where she shares her work to educate others about FA. Her dedication to raising awareness is commendable, and her advice to those newly diagnosed with FA is to practice patience. She encourages them to take deep breaths, give themselves breaks, and understand that although the journey is tough, patience can help them navigate through it.
Yesenia’s resilience and creativity are truly inspiring, and we fully support her mission to spread awareness and understanding of Friedreich’s Ataxia.
We would like to the Jason and Yesenia for sharing this inspirational story with us.
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