KEEPING IT REAL: Mariah’s Story, Part I

KEEPING IT REAL: Mariah's Story, Part I
By Mariah Kilbourne*

Mariah Kilbourne of YogaForCP shares her story via Q&A. Check back soon for more from Mariah.

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

In elementary school when I was growing up, I was always the only kid in my class or activities that had a physical disability or used a mobility device. Those around me always believed in me. They included me, supported me and challenged me to strive for each goal set. I felt confident in who I was. I embraced my disability as a part of me, but it was not my whole focus of who I am.

Cerebral palsy impacts the way I move in the world, but not my potential. It was up to me to choose my attitude and my actions in each moment. I learned to adapt, think creatively, and keep trying. I had fun with my friends, scouting, arts & crafts, playing baseball, biking, listening to music, etc. Growing up, I went to PT and OT often (two to three times per week). Occasionally, I did speech therapy. I also did horse therapy and swim therapy. I had a rhizotomy, hip rotation osteotomy, muscle transfers, and hamstring lengthening surgeries from age 2 – 12. 

In middle school, I moved to San Antonio, TX. That was the first time that I met other kids with disabilities. I was able to participate in an adaptive sports program called Kinetic Kids. I was able to participate in group sports like baseball, track & field, gymnastics, and dance. It helped me grow in teamwork, confidence, goal setting, determination, and joy. Through Kinetic Kids, I was able to make a best friend, DiDi Neal. It changed my life forever. 

What is your relationship with your cerebral palsy?

My cerebral palsy is both a small and big part of who I am. It’s a small part of who I am because it is only one part of what makes me ‘me’. It’s a big part because it does impact everything I do. Because it is always a part of me, cerebral palsy shapes each experience that I have. I am grateful for the strong community of support around me. The friendships I have made. Each moment of this experience. 

How did you get into yoga?

I met my best friend DiDi Neal through Kinetic Kids in 2003. We were both in 8th grade at the time. It was the first time I met someone who was going through the same experiences and challenges, because she faced them too. We instantly recognized the powerful connection and immediately became known as the giggle twins. Wherever our lives went, we always knew we had each other. Through middle school, high school, college, and young adult life and all of the highs and lows of each of those moments. Meeting DiDi shifted my entire life and all of the experiences to follow. 

In 2017, DiDi’s disabilities progressed rapidly and she died on December 23, 2017. It was a loss more deep than anything I had ever experienced before. It impacted every part of me. It was hard on my body due to the way my physical body processes stress in the presence of spastic cerebral palsy. For a year after she passed, I had difficulty walking, moving, and interacting with my friends. I knew this was not the way I wanted to live my life or how DiDi would have wanted me to continue.

So, I asked my physical therapist, Dr. Tiffany Neal, if she thought it would be a good idea if I tried Yoga. She immediately said yes and connected me to her friend and colleague Dr. Sarah Eads, who is also a physical therapist. We began working individually and adapted the practice to my abilities. I enjoyed the practice very much and became dedicated to attending classes consistently at Method Wellness and Physical Therapy. At this point, I have learned how to adapt my practice and have attended classes alongside practitioners. I have completed over 300 classes since December 2018.

Since I started to practice, I have been able to return to walking with my Kaye Walker, transferring easier, and have regained my independence in the world. The practice has taught me that I am not alone. The connection I have regained with my body and with my community inspires me to want to share the practice with others who have disabilities and may feel the same way I did. 

Continue to Part Two of Mariah's Q&A here. 

*Mariah’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.