For as long as I can remember, I have been a performer. I think I was 4 years old the very first time I was standing on stage, mic in hand, and spot on me. Singing, acting, performing, all came second nature to me. I even danced. Loved ballet and lyrical and found tap and jazz rather boring. Modeling became a fun and quiet way to perform, almost like mime. I loved sports and didn’t mind getting my hands dirty but mainly because I’ve always had something to prove, track was my all time favorite and I could run like the wind.
But, like every moment in my life, things are a bit harder for me. When I say things, I mean breathing, my heart pumping, eating, and even walking. Things that come automatically for everyone else, are things I am strangely consciously aware of and fight for on a daily basis. Even as a toddler, my mother would wonder where these attacks came from that left me struggling for air. Only thing we did know was that it wasn’t asthma and as horrible as they looked, I always came out of it. And what of the frequent fevers and infections? Or when I was in my late teens and getting full rides to California to train with the best directors and choreographers and I suddenly was having trouble walking? Both of my lungs collapsed, I started having severe heart issues, and then there was the pain. So much pain.
It took years to decipher the secrets of my body since they came from every direction and fit no pattern. Seemed I had at least three organ systems that didn’t function to their potential on a somewhat regular basis. As time went by and I aged, things became worse. Physically worse for my medical condition as my heart became more and more erratic and I had trouble with frequently fainting with little or even no exertion. Finally, over the past two years and some intensive testing and amazing specialists, I got answers.
I have Cytochrome C Oxidase Partial Deficiency. What does that mean? It means I’m incredible. I’m a survivor. It means I shouldn’t be here and my children shouldn’t either. It means that my talent, my smile, my laughter, is special because I should be flying with the Angels in heaven, not dancing on the ground with friends.
I have an optimism rarely seen, a determination unmatched by others, and talents God gave me that keeps me here to share with others. Is there a cure? No. Will I die early? Probably. But let me tell you something. My life will mean something. Everyone I touch will remember me. I refuse to let this illness control me. I am not as fragile as my illness says I am. It speaks a different language than I do. I am strong, invincible, happy, and Refuse to listen to the Fate my disease places over me. In fact, I’m even writing the music and singing in a band entitled “Refusal of Fate”.
But there is just something incredible about modeling. It has become an amazing escape for me. I train hard before a shoot so that I can nail it! Which means extra
medication, complete rest for three days prior, and lots and lots of positive energy. I take FORTY pills a day and I have six other medications that I take as needed. However, when I am in front of that camera, I’m not sick anymore. I can forget about my pain and my struggles, and when I look at the pictures, I don’t see a dying girl, a see a strong woman. Modeling makes me feel invincible.
My goal isn’t just to leave the world with interesting or beautiful pictures. My goal is to leave this world having touched the lives of everyone I get the pleasure of knowing. Letting them know that life is worth the fight. That through your pain, always smile. That its all worth it, even the bad stuff. Because it makes us the people we are. Laugh a lot. Smile all the time. And never ever give up. If you want to be a model, be one. If you want to be an astronaut, be one. Go after your dreams, with a vengeance and don’t let anyTHING or anyONE tell you its too hard.
So let me leave you with one thing. I’m gonna be here forever, just watch. And when I do go off to dance with angels, I’ll leave my warmth in the hearts of everyone i know. I promise.