KEEPING IT REAL: Diomayra’s Story, Part One

Fri 05 Jan 2024

KEEPING IT REAL: Diomayra’s Story, Part One*

By Diomayra Ramos

Hi everyone, I want to start by thanking Jocelyn for the opportunity to answer the following questions. 

Describe what it was like to grow up with cerebral palsy. 

I was born on an island west of Puerto Rico called the Dominican Republic. My childhood was mostly normal, spent with my cousins and neighborhood kids. After finishing school at noon, a little group of us would always come together to play baseball or any other game, and they always made sure to include me every time by being the score keeper. Back then, I didn't use any walking aids, but if I had to walk long distances, someone would always offer their hand for support.

Living with cerebral palsy was never a major issue for me, although I admit I sometimes used it to my advantage, guilt-tripping others into letting me join in on games that required running.

At the age of 18, I underwent my first surgery to get the baclofen pump implanted. Last year, I had it removed, making it a total of three surgeries, including the implantation, maintenance, and removal of the pump. 

What's your relationship with your cerebral palsy?

Growing up, I always knew I was different, and surprisingly, I was perfectly fine with that. As stated previously, I would sometimes use my disability to my advantage when convincing my friends to let me join in on games like hide-and-seek. I would use my disability as the reason why they wouldn't allow me to play, making them feel guilty, and then they would end up carrying me to hide with them.  A girl had to do what she had to do!

Apart from the usual desire to run and have clearer speech, I was mostly okay with having cerebral palsy. However, things began to change gradually when I moved to the USA. I was hit with the harsh reality that what I could do wasn't considered good enough. This realization took a toll on my confidence, and my longing to be "normal" took center stage. As a result, I avoided holding conversations with anyone at school because I thought my speech wasn't clear enough for others to understand.

 But now, I am in the process of rebuilding my relationship with CP and accepting myself as I am. It has been an interesting journey relearning to love a part of me that I disliked for so long.

 What are you studying and what drew you to it?

I graduated with a bachelor's degree in Business Administration and completed a semester towards my master's in Finance. My aspiration is to return to school in the near future to pursue my goal of becoming a financial advisor.

*Diomayra’s story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice, medical endorsement, or other endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Thu 11 Apr 2024

In the first part of our newest Science Spotlight blog, learn how scientists can harness electricity to help with movement disorders that sometimes accompany cerebral palsy.

Thu 04 Apr 2024

Check out the final part of Rindi and Soren’s story.