Nichole- Hello Curious One

I saw you catch a glimpse of me from a table away. Your eyes fixated just long enough for me to know that I had sparked your interest.

I completely understand. It isn’t every day you see a girl roll into a public place with a personal care assistant to one side of her. It’s not every day you see a grown woman being fed small bites of food, or asking for sips of her drink, or needing assistance in every physical task.

I’m not fazed by your curiosity. In fact, I encourage you to find out more because, although you have formed what might seem like a pretty good generalization of the person I am and the life I lead, I promise you that I am so much more than what meets the eye.

After two days on this earth I was Diagnosed with Arthrogryposis Multiplex Congenital (AMC), Scoliosis, and last but not least Clubbed Feet. So basically to break each one down AMC describes congenital joint contraction in two or more areas of the body. Scoliosis a sideways curvature of the spine. Clubbed Feet is a birth defect which the foot is twisted out of shape or position.

Curious one, I don’t expect you to get to know me just from this one letter. There are a lot of stories to be told from my 26 years of living; stories that have broken and sewn me back together again to lead me to where I am today. These stories tell tales of countless hospital stays and everyday battles that somehow become second nature to someone living with my diagnosis. Yet they also tell a tale of a diseases that tries to destroy a girl who is never willing to give up the fight.

In spite of the struggles I face, my stories are filled with one common theme: strength. Whether that strength comes from the ability to simply face the day or take giant leaps of faith in pursuing my dreams, I choose to be strong. My mom didn’t raise a quitter she raised a go getter.

Back in high school, I had a teacher tell me I would never amount to anything because of my physical disability. The moment he failed to look past what he saw on the surface was the moment he failed to see me for who I really am. He failed to recognize my true strength and potential. Yes, I am that girl in the wheelchair. I am that girl who can’t live independently or drive a car or even reach out to shake your hand.

However, I will never be that girl who won’t surmount anything because of a medical diagnosis. In 26 years, I have pushed my limits and fought hard to create a life that I find worth living. I have graduated high school currently working on my Associates in Early Childhood Education along with Communication Associations. I have discovered a passion for writing and how storytelling can help others. Most importantly, I have found strength in my struggle to understand that this life is only ever going to be as good as I make it.

The next time you see me and my posse out, please know that I have AMC, but it will never have me. My disease doesn’t define who I am nor does it set me apart from everyone else. After all, between chasing dreams and goals, I bet the chances are you and I have a lot in common.

“It’s time for me to come in tune and release my sound in the earth today.”

Yours Forever,
Nichole