I have come to the point of my life where being thirty-five years old and a mother to three that I can no longer carry my secret. I am exhausted of being afraid. I am just tired. Its been a burden in may ways. And it truthfully is a HUGE part of me and to keep hiding it or not talking about it is like denying all that I truly am. And I love ME so hear it goes.....
I'm disabled. I have a disability. I was born physically challenged.
I don't like telling people-I actually find it annoying and cumbersome to have to explain. That's because you can't really tell that I am. I have also learned to hide it well....like any secret.
What I was born with is called Charcot-Marie-Tooth Disease. Kind of a cool name huh? Its named after those who discovered it. My mother noticed right away that I wasn't walking when I should have-I was running around everywhere but not walking well. She then became my princess in shining armor and searched high and low in order to find someone who could explain to her what was
My mother's quest was not forfilled in her lifetime but my father took up her quest and by the age of nine I was diagnosed by a wonderful doctor named Dr. Alfred Spiro. He still happens to be my doctor-over twenty-five years later. He's sort of the head guy when it comes to neuropathies.
What I have is considered a form of Muscular Dystrophy. Have you ever heard of Jerry's Kids?
Jerry Lewis has hosted the telethon to raise money and awareness for the Muscular Dystrophy Association . He has been doing it since 1952 and raised over two billion dollars. Because of this fundraising I was able to have my first major corrective surgery in 1989-the summer before the 8th grade. Perfect timing right? I missed out on half a year but was able to return after January.
You see CMT affects the major nerves that go down your arms and legs. Nerves conduct the muscles and make them strong. Last time I was tested for the strength of my muscles in my lower part of my legs I scored a 4/10. Ten being healthy and
Because my nerves are affected I don't have much muscle strength in my hands and feet. My hands are sort of crooked (you really have to look hard to notice), I have trembles and shakes in them. I often find humor when one of my fingers starts to twitch for no reason..crazy hands of mine!
My legs are another story. I have no real muscle growth in my calves so they look skinner than
My CMT is non-progressive, meaning it won't get worse but it will age with me. So dancing til 6am at a nightclub just can't happen anymore. What sucks is that I can't wear dresses or skirts everyday anymore-I do miss that.
Doing my pinup work is a challenge as well because I cannot stand or walk in heels but what I can do is use them as a prop! My legs don't look as great as others but I think I have a beautiful face. Thats just my opinion of course. Like I said before-I love myself so of course I think I am fabulous hehehee
What I am trying to say is I face challenges everyday. Being a mom-being a mom with a physcial challenge. Being a woman-being a woman with a physical challenge. Learning to become a pinup-learning to become a pinup with a physcial challenge.
Thing is-its a part of me. I can't make it go away. My calves are never going to grow muscles. I will never walk down the street in some gorgeous red open toe pumps. So I decided that I have to work with what I have and embrace my CMT like an old friend and be open to myself and to the world and say...
Hey this is ME. I am a thirty-five year old stay at home mother of three, I am phycially challenged but I don't give up. I can make my dreams come true whether you believe in me or not. Whether you think I can do it or not because my children are proof that I can. I was told having children would be difficult and I even had some naysayers but they are here arent they? They exist dont they? I helped make them, I carried them and walked around with each of them inside of me with my braces and all. I bore them and have been raising them.
My children watch me put my braces on and when my daughter says, "Mama I can't do this" I always tell her, "Yes you can!" You have to choose to get up everyday and tell yourself that you can even if the world tells you different.
Now tomorrow I will get up-do my mama duties and keep working on those Victory Rolls!