Yesenia Ramos received a diagnosis of Friedreich’s Ataxia when she was 6 years old. She is now 23 and lives in Edmond, Oklahoma with her parents and an older brother who also has FA. Yesenia is very proud of her Mexican heritage.
For Yesenia, the road to an early diagnosis began with multiple sprained ankles and a general sense of unbalance. These memories are actually rather faint for her. Her parents, having gone through something similar with her brother, recognized the signs and took her to be seen and tested by a Doctor. She does, however, remember growing up with the effects and increasing changes that were brought about by FA. This she feels is the reality that robbed her of her childhood and teenage years.
Yesenia now writes poetry and has a book published. The book was printed last March and is currently available on Amazon. Click here to check it out!
Good for you, Yesenia! Writing is a great and creative way for us to release and communicate our thoughts/feelings. She has also written a poem recently about her FA and how it generally leads her to feel. She has titled the writing Sick At Heart and would like to present it to you – so here it is:
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
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
it’s 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 has a poetry page on Facebook. The poems about FA that she has shared on the page have helped people to know and understand the neurological disease. That is Yesenia’s main purpose of posting her poetry is to raise awareness and increase understanding. We admire your efforts and are one-hundred percent behind you, Yesenia!
Yesenia Ramos would like to pass on to anyone who is newly struggling. Give yourself a break – take a deep breath. It won’t be easy but there will always be a way for those that are patient.
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.