Many, if not all, of my friends and acquaintances know that I was born with a spinal defect. However, I recognize that many might not know how it affects someone's life.
October is Spina Bifida Awareness Month, an annual campaign focused on advocacy and support for those with spina bifida. People like me are also encouraged to share perspectives about the challenges — big and small, occasional or everyday — we have.
Spina bifida, which translates as "split spine" or "open spine," is a defect which occurs when the spinal column does not close all the way while a fetus is in a mother's womb.
What exactly causes spina bifida is still unknown. A mix of genetic and environmental factors can come into play. However, a regimen of folic acid — which promotes neural tube development — is recommended before and during pregnancy to mitigate these. Nevertheless, spina bifida is one of the most common birth defects found in the U.S.
Myelomeningocele is the most serious form of spina bifida. The spinal cord and tissue will protrude through an opening in the underdeveloped neural tube. This is a crude way to put it, but all of it is put back inside before the opening is sewn up by a surgeon.
The condition can be further complicated by hydrocephalus, or "water on the brain." Cerebrospinal fluid collects in and around the brain as it has nowhere to go. A surgeon will put in a shunt, which is a hollow tube that draws this fluid away from the brain.
I have myelomeningocele and a ventriculo-pleural (VP) shunt, through which the fluid drains down to my chest. For it being "installed" back in 1995, my shunt will serve its purpose until the day I die. The anatomy behind surgery in general is remarkable like that, I think. The principles don't change that much even though the technology will.
I have continence issues. I will always have a limp. My balance certainly isn't optimal. However, I am one of a few people who can walk as well as I can, if at all. I don't credit this to "luck" as much as I do to having a damn good surgeon in Dr. Joel Boaz. I would be remiss if I didn't touch on the impact Dr. Tim Brei had from the beginning. Both were part of the care team I had — and still have — at Riley Hospital in Indianapolis.
I think it would be disingenuous for me to say that spina bifida doesn't define who I am, or that it never has. This especially applies to my social and professional outlooks.
I was lucky enough to have teachers like Allyson TeGrotenhuis, who worked with me as a child on my manners and how I could always express myself in positive ways. The lessons which Mrs. T taught me about kindness and putting myself in others’ shoes continue to influence how I carry myself. She showed just how important the self is.
Spina bifida is a defining element of who I am, and it goes beyond how I walk. To me, this is a crucial reckoning of how many people like me can succeed in work and in life.
You can learn more about spina bifida, as well as find resources for parents and caregivers, from the Spina Bifida Association at www.spinabifidaassociation.org/.