"I have a form of spina bifida called myelomeningocele. Spina bifida is the most common and permanently disabling birth defect in the nation, but it's still unfamiliar to most people, including many doctors. I live with a continual bladder infection because of the way my bladder empties. My kidneys are fused together, with one functioning at 90% and the other at 10%. Some of my organs are held up by slings due to prolapse, so that they won't fall or cease functioning. Spina bifida also creates nerve damage to the spine, which affects internal organ, motor, and psychological functioning. Many people don't face such things until they are older, if ever.
"I don’t fit into what people refer to as 'normal' or 'healthy' society or into the spina bifida community, so I’m left in limbo. There have been times when people haven’t believed the battles I go through just to live my life — even people at conferences have shunned me because I don’t look like their kids with spina bifida. People don’t believe my spina bifida has resulted in me being hospitalized for possible organ failure, or that I've had surgery that put me in the ICU for nine days. There are times I just want to show them my spina bifida scar to prove I have the condition! And on the flip side, I’m also expected to do all the things a 'healthy' person can do, because, again, I don’t 'look sick.'
"Spina bifida limits how my kidneys, bladder, intestines, uterus, back, brain, toes, pulse, and blood function. It affects the food I can eat, and even how my body came into puberty. Still, I have not allowed it to limit my life; there are many times I’ve had to complete a school project or answer work emails from a hospital bed, with an IV in my arm. Still, I’m grateful for my triumphs and successes, like becoming an actress, print model, and licensed massage therapist, earning my master’s degree in professional counseling with a concentration in expressive art therapy, and holding the position of chief executive director at an associate degree college for holistic health care — things that were made possible in part by a number of doctors and my very supportive parents.
"I wanted to be photographed at South Street Seaport because it's where I came after a job interview in which I was asked to explain my participation on the board of directors for the Spina Bifida Association of Arizona. The people asking looked confused and scared, as if I had leprosy. Standing in the breeze here, I realized how important it was for me to become even more active and vocal in my community. People with spina bifida all look and function differently, but we can all be 'messengers.' It’s time to give a name and face to spina bifida!"