When I was four years old I was diagnosed with a neurological disorder called Charcot Marie Tooth. CMT is one of the most commonly inherently peripheral neuropathy found worldwide, yet no one seems to know what it is. CMT causes patients to slowly lose normal use of their hands and legs as nerves degenerate and muscles deteriorate because the affected nerves no longer stimulate the muscles. My parents told me they started noticing me walking differently when I was four. They decided to take me to a pediatrician to see if they could figure out what was going on with my walking. This first doctor told my parents he wasn’t sure what was wrong but he would try to fix me by breaking my legs and casting them up. According to my parents they picked me up at that moment and ran out of the hospital. Luckily, my uncle had lived by a pediatric orthopedic specialist who was able to recommend us to a neurologist who was able to diagnose me with Charcot Marie Tooth.I had my first surgery when I was five on both of my legs. Symptoms started showing up in my hands when I got older and I have had three surgeries on my right hand. I now have to use leg braces to walk around because I can barely walk around without them.
I often find myself trying to do things that my mind wants to but my body wont let me. Many of the authors from this week talked about having a disconnecting with their mind and bodies. With their bodies not letting them do what they mentally want to. When Iwas reading Avery’s Rip Tides I related to her story of when she was trying to swim and got caught in a wave and needed her friends to help her get out. This happens to me frequently. Even when it comes to steps I will always have friends run next to me and help pull me up stairs because I can’t do it on my own.
The authors also talk about their struggle with identifying as a person with a disability. Avery explains how she had trouble finding a way to identify her-self when it comes to her disability. She talks about how she doesn’t know if she is passing for able-bodies or passing for disabled. I related to Avery when it comes to identity because I also do not know if I am passing as able-bodies or disabled. I often have people run up to me and ask why I am walking so weird and at the same time if I explain my disability to people I will often get “oh, I didn’t even notice you were walking differently.” For me I mostly label myself as a person with a disability. It’s something I have always had and will always have so labeling myself with a disability does not upset me. Sometimes that labelhelps me feel more connected to others with disabilities and not so much an outcast. Hopefully in the future more people with disabilities will be able to feel comfortable identifying as a person with a disability and not be ashamed of it.
The picture is of me when I had my first surgery.