PICTURE ABOVE: Models Donna & TJ and me (Jasmine Lee)
With the release of #EllasLove right around the corner I figured it's time I tell everyone.
When you read #EllasLove you will realize that it's not your everyday run of the mill romance. Ella deals with the reality of many things. And even though I put a note at the beginning of the book I just want everyone to understand ahead of time.
I am wheelchair bound. I have Charcot Marie Tooth (CMT) a form of Muscular Dystrophy (MD).
I know not many people understand this disease. Or they think their is only one type of it. But there are thousands of different forms. Growing-up I had limitations when it came to certain things. I walked with a slight limp. I wore braces on my feet. My feet look different. And because of this I was bullied for as long as I can remember and it followed me past High School into Adult hood. It didn't stop!!!
To this day I still deal with it and what's worse is my kids deal with it. I can't tell you how many times my kids (A boy 11yrs & a girl 14yrs) have gotten into a fist fight defending me cause someone that has seen me out and about or at their school has said something to them. I've told them to let them it doesn't hurt me anymore, but to them it does hurt them. So I try to understand and I try to hide my own feelings and tears from them so they don't know. They're too young and have enough on their plates.
Growing up I knew I would never have kids, because when I was 8 or 9 I overheard my doctor at the time talking to my mom. Saying if I had kids they would have a 50/50 chance of having it and it may be worse than my own. I was upset, I may of been young but I understood what it meant. I was already in pain everyday then, even though I could run, walk. I laughed and played the part of a happy pain free child, I learned early on how to hide the pain. And that continued on into adult hood.
When I was a little older I went to the MDA Summer Camp every year, and from there I saw hundreds of kids who became my friends. They too understood what it was like to hide the pain from their parents. I befriended a lot of different people of all ages from the fellow campers, counselors and camp staff. That's where I seen first hand I had it better then others, cause there we're kids younger then me and they we're already wheelchair bound. I remember a set of twin sisters who when I first meet they we're wheelchair bound but as the years progressed they learned to walk. But at the same time I watched another girl same age as me go from walking to being wheelchair bound throughout the years.
I realized then that even though we all have MD we had different forms and it affected each of us differently.
I never really told anyone growing up what was wrong with me, heck even my friend didn't even know I had MD or that I was in pain everyday. That was how good I was at hiding it! Only now I can no longer hide it. I try to take everything in and be happy and smile and not let things get to me anymore, but a person can only handle so much in their life.
Anyways, that's my confession and I hope that Ella's Love brings some joy and understanding to everyone.
MDA - http://mda.org/
Stay-at-home mom, I love to read & write