Living beyond limits: my Spina Bifida story

For those that are friends with me on Facebook, it?s well known to you by now that October is Spina Bifida Awareness Month.

Everyday this month, I have been sharing at least one fact or stat about the birth defect to help my fellow Facebook users better understand the condition that I live with every day. And in keeping with this year?s Spina Bifida Awareness Month theme of ?Living Beyond Limits?, I thought I would take a moment before October is over to share the facts with you.

For all you linguists out there, I probably don?t have to tell you that Spina Bifida is the literal translation of the phrase ?split spine? in Latin. Very simply put, people, like me, that are born with SB have spinal columns that did not close completely when we were still in our mother?s womb. Most national statistics point to SB being one of the most common birth defects in the United States, and the most permanently disabling birth defect in the country.

So, if the statistics on its commonality are true, why is it that so many people have never heard of SB or met someone with the birth defect? This is a question that gets posed to me quite often when I speak on SB. While I think a lack of public education on the subject is one major reason, I also believe that the birth defect?s versatility may also be another common reason.

There are two main types of SB ? Spina Bifida Occulta and (get ready for a word that will challenge your pronunciation skills) Spina Bifida Myelomeningocele. The latter form is often called ?hidden Spina Bifida? because about 15 percent of healthy people have it, but typically don?t know it. Spina Bifida Occulta usually doesn?t cause harm to the spinal cord and nerves, and has no visible symptoms.

Spina Bifida Myelomeningocele (SBM), which is the type of SB that I was born with, is the most severe form of the birth defect. When I was born, parts of my spinal cord and spinal nerves were exposed through an open part of my spine. It causes permanent nerve damage and other disabilities in people that live with it.

To prevent infections and help save my spinal cord from more damage, I had to undergo a major operation shortly after birth to close the open part of my spine.

Interestingly enough, people born with this type of SB all vary in terms of what symptoms and paralysis they experience. For me, my SB formed on the lumbar section of my spinal column, which means most of my symptoms and nerve damage are contained from my hips and all the way down the rest of my body. In theory, had my defect formed higher up on my spinal column, paralysis would have begun much higher on my body and affected everything else below it.

Despite surgery to repair my spinal column, my SB doesn?t allow me to control or feel most of my toes, feet or legs. In addition, I have hip dysplasia that, in conjunction with the lack of control I have in my feet and legs, causes me to walk with a rather unique gait and struggle with balance.

The second most common question I get asked is how I got Spina Bifida. The answer is simply that I don?t know. Likely, both genetic and environmental factors act together to cause the condition, but doctors and scientists haven?t solidified a specific cause yet.

Despite having significant feet, leg, back and hip paralysis ? among other medical issues - I haven?t lived a sad or troubling life in the slightest. I work full-time; ride horses; keep up with my two young, energetic nephews; volunteer regularly at my church and in my community; and spend time with an ever-busy circle of friends.

In my 23 years, I have seen medicine evolve and have reaped the benefits. To help me walk, I use leg braces everyday. When I was younger and before I could walk on my own, I also used a walker to get around. Numerous surgeries, medicines and a superb medical team at the University of Iowa help me live independently and do most of the things I want to do without too much trouble. And just in case I have to walk more than my body can handle, I have a wheelchair that will get me where I need to go.

But what has really helped me as I have gone through life is my familial support system. God knew what he was doing when he placed me in the Kelly family. My parents, siblings, grandparents, cousins, aunts and uncles have all been hugely instrumental in helping me overcome what could be a major barrier.

So, even through I didn?t choose Spina Bifida, I do choose to live it out with pride and hope for the future. That?s how I live beyond limits.