Raise Your Hands for Cerebral Palsy Awareness Month
It's March and March is Cerebral Palsy Awareness Month. For about a year now, I've been sharing my experience living with Cerebral Palsy to do my own part in creating awareness of what it can be like to live with CP. But, I am not alone. Millions of people around the world live with CP and each of us have similar and unique experiences with CP.
According to the Cerebral Palsy Alliance Research Network (CPARN), people with CP use three to five times the energy of non-disabled people. For me, on a daily basis that looks like ongoing fatigue, a healthy appetite that hasn't diminished since I was a teenager, and an above average coffee habit to sustain energy.
They also indicate that premature birth and stroke are some contributors to the onset of CP. I was born two months premature and have some other conditions that are likely related to the CP but not part of it (such as vision related issues). Cerebral Palsy is a muscle disorder caused by a brain injury. I've experienced some misconceptions around my CP. Such as, needing to point out that CP is not a genetic condition and I can't pass it on. Sometimes it takes me longer to do certain things, but that doesn't mean I can't do them or don't want to try. My CP won't progress or go away over time.
However, CPARN, also notes that adults with CP tend to experience the effects of aging sooner than non-disabled people – something I can experientially verify because decades of wear and tear take a greater toll with each passing year. Similarly, physical therapy and other forms of self care help with the effects of CP but don't eliminate them. For example, after assisted stretching my spasticity is reduced and my muscles feel looser, but they tighten back up fairly quickly.
In recent years, I learned from CPARN that some people with Cerebral Palsy continue to experience the Moro reflex, also known as the startle reflex, that newborns have. After learning that, I had a name to go with the seemingly random jumps and starts that I experience on a daily basis.
These are just a few examples of some things that different people living with Cerebral Palsy might live with in their lives. I do my best to speak from my personal experience because I'm aware that there are several different variations of CP with their own unique features. The CP that I have makes my muscles tense and spastic in pretty constant ways. It's mostly impacting the left side of my body, but I am able to walk, and get around mostly unassisted. Others with CP may share my experiences and might not.
For the aforementioned reasons, I invite questions and conversation around my CP experience and I don't want to generalize because each person living with Cerebral Palsy and other disabilities has their own story and they deserve to be heard too. It's difficult sometimes when people assume how I do or don't function or make choices for me based on assumptions. There are few things I value more than my personal agency and having my own voice. Some people might not want others to ask questions about their abilities and cultural conditioning tends to encourage avoiding asking about disability. For me, I'd rather you ask than assume. I'd rather have a conversation.
This blog shares my Cerebral Palsy stories and that helps me bring awareness to my lived experience, but every March the Cerebral Palsy community works to bring awareness to the stories of the millions of others who also live with CP. In this post, I hope I've pointed to the shared experience and encouraged you to see each of us as the individuals we are. In addition to the CPARN whom I've learned a lot from about my own CP, there are research groups, community groups, podcasts, advocates, and more doing work well beyond my reach to provide help, resources, technology, community, and more to the children and adults around the world who journey with Cerebral Palsy every day.
Comments
Post a Comment