Lucia's normal ...

Most days are pretty uneventful. I wake up - not usually willingly - take a shower, get dressed and drive to work. In fact I rarely dry my hair, and the first words out of my mouth as I speed through the doors at work are coffee. After a few sips of coffee, quick check of the gmail, and my day can begin.

Really nothing spectacular. In fact my morning routine probably sounds similar to many of yours.

Are you surprised?

I spend a lot of time trying to convince others that life with a disability is not so bad. In fact I've never known a day without having to use crutches and a wheelchair. My body has always been unique - my short stature, short neck and skinny legs - fit me.

Being born with spina bifida has caused irregularities inside and outside my body. But the condition is maintained. I do what everyone else has to do to keep healthy - take care of myself. I had surgeries on my feet and left leg when I was a toddler, and visit the spinal cord clinic every year. But my health care sounds familiar to others I've encountered without disabilities. It's part of life that we as humans have surgeries or visit doctors.

I was fortunate that I was born with a closed spine and did not need surgery on my back.
I didn't need a shunt, which is common for those with spina bifida.
I have a dimple in the middle of my back - the sign of where the spinal cord has been affected.
I have scoliosis and the curvature in my back resembles a figure eight (x-rays are awesome!).
I have feeling in my legs, feet and have sensation to know when I need to use the rest room.
I can't wiggle my toes and there's a slight numbness toward my rear area.
My legs are weak and I can't stand up by myself without feeling tired after one minute. When I take steps it resembles a child learning to walk and my balance is way off. I can only take one or two steps.

Don't worry I am not in physical pain.

I was diagnosed with spina bifida at birth but I am not my diagnosis. I do not let it disable me from living life. In fact how can you miss what you do not know?

My "normal" is using a wheelchair and crutches. My "normal" is being short in a tall persons world. My "normal" is using hand controls to drive and putting a wheelchair together every time I get in and out of the car.

So the next time you see me, or someone else with a disability, out and about. Don't pity. Don't thank the gods you were born "normal". But realize that we are just like you. Our "normal" may not be the way you view it, but it works for us. See us as human beings.

- Lucia -

Comments

[Raquel]

I've said it before and I'll say it again; you are a true inspiration Lucia, so thankful for folks like you in the world who are willing to share their story and help us learn and live with an open mind and heart. You give me strength!

[Ann Weller]

"I am not my diagnosis." Perfect. Thank you, Lucia.

[Anna]

Thanks for sharing Lucia! And of course it goes without saying that there really isn't a normal is there? Only that which we all think should be. Love your writing and your honesty!