Ataxia Profiles: Faces Of Ataxia...Yesenia Ramos

     For today's Ataxia Profile, we will be introduced to Yesenia Ramos.

     Yesenia is currently twenty-three...but received a diagnosis of Friedreich's Ataxia when she was six years old. She lives in Edmond Oklahoma with her parents and an older brother who also has FA. Yesenia's heritage is Mexican...of which she is very proud.

     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...but her parents, having gone through something similar with Yesenia's 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...and feels the reality that it robbed her of her childhood and teenage years.

     Yesenia now writes poetry...and as a poet has had a book published, titled Emotionally Deteriorating, Emotionally Distressing: Who I Am With FA. The book (pictured above) was printed last March and is currently available on Amazon. 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 in this blog...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
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 has a poetry page on Facebook...and 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...to raise awareness and widespread understanding. We admire your efforts and are one-hundred percent behind you, Yesenia!

Patience...patience! It is what Yesenia 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.

Thank you for sharing with us Yesenia...your story and poetry are informative and inspiring. I hope that it goes well for you.

Until next time my friends,

Jason