KEEPING IT REAL: Marisa’s Story, Part Two

KEEPING IT REAL: Marisa’s Story*

PART TWO

By Marisa Conners

In this mult-part series, Marisa Conners shares her story with cerebral palsy and how she launched an inclusive women's fashion brand. Check out Part One to catch up. 

I started using an iPad during my junior year of high school and it changed my life.

For the iPad, I can navigate the screen, tap any apps, type on screen, and even control aspects of the screen that accommodate my needs with a special multi-menu touch button called AssistiveTouch. I have a text-based communication app on my iPad, which is basically my communication device and tablet computer.

Using an iPad feels like a desktop computer with the onscreen keyboard. I think I am a fast typer on the iPad because I can type with my pinky finger and knuckles on the screen. It’s much easier for me to type my stuff on the screen than the desktop computer.

I can type with a physical keyboard for the desktop computer, but using a physical keyboard is not much better for me. I also use directional keys to scroll through the web and move objects around the screen with my fingers. However, I use an onscreen keyboard to type through the trackball mouse. Throughout my life with cerebral palsy, I have been having weekly physical therapy sessions that help me build more strength and improve my posture and coordination. I used to do occupational therapy and speech therapy throughout my school years. I used a walker during that time. I had underwent a phenol procedure that helped treat my muscle spasticity from early childhood to senior year of high school.

Currently, my permanent treatments for cerebral palsy are oral Baclofen and Botox injections. I take an oral Baclofen muscle relaxant once daily and I get Botox every 4-5 months. These treatments usually help my muscles get stronger but sometimes my left arm seems to be tight or weak because the arm is affected by my motor skills, as it’s hard to control my left arm. Despite having difficulty controlling my left arm, I can even use both sides of my body to perform purposeful physical activities such as exercising, dancing, and standing. I am able to be strong at all levels of my body. My main physical goal is to keep my muscles strong as long as I can.

What's your relationship with your cerebral palsy?

 I have been worried about living my good life with a physical disability. I feel somewhat frustrated and insecure because CP has stopped me from doing so many things. That hurts my feelings.  However, I can try to compensate whenever I can, but it’s incredibly difficult to adjust to my life with a disability. I never thought I would be able to do anything because of my disability but that doesn’t mean I can’t do anything.  Every person struggles to live with a disability. It’s very important to ensure they can deal with it.

Now, I feel extremely comfortable with my cerebral palsy because I have excellent control of my body and I have outstanding mind control. My mind has never been exploited or neglected because of cerebral palsy. Despite being nonverbal, I am 100% open-minded and I have an excellent understanding of what I can do.  

My biggest frustration is trouble controlling my emotions which causes me to cry a lot when people yell at me and laugh when something is wrong or sad. This frustration was used in my childhood life. It made me feel so embarrassed and irritated. I’ve now overcome this frustration so I can fully control my emotions on regular basis. 

I never want to give up on my life and my dreams and happiness…. This is who I am. Because I have always accepted my cerebral palsy. I think you can believe in me. 

Despite the challenges of cerebral palsy, I feel incredibly lucky to be able to live independently and navigate my life and achieve my goals. I always strive to make a difference in the world as I can use my voice to spread my prideful message and break barriers.  Let’s hope to keep changing the world!! 

You can follow Marisa on Instagram @marisaconners.fashionista, and check out her Inclusive Womenswear Brand, @marisaconners.mc and Graphic Design account @marisaconnersgraphics

*Marisa'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 or medical 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.