In 1975, the year I was born little could be done for a child with Spina Bifida. Pat MacDonald, a neonatal intensive care nurse, said that the doctors did not give a lot of hope for the future to parents of these babies (personal interview, February 5, 2004). The doctors informed my parents that I might never walk, depending on the actual severity of the defect. I was born with the myelomeningocele type that you read about above…

When I was three days old, surgery was required to repair the lesion on my spine. The lesion was in the lumbar region of my spine, specifically the L4 and L5 vertebrates.

I had a shunt implanted, at 2 weeks of age, in my head to control the hydrocephalus (water on the brain) that over 95% of the babies born with spina bifida usually have. The original shunt that the doctors implanted in my head lasted an exceptionally long time, it had to be replaced when I was 25 years of age. I have had two others implanted since then though. As I grew in height, I had to have the tube lengthened so that the shunt could drain properly.

I was fortunate enough to have two very loving and supportive parents that were always there for me, no matter what the issue was. I grew up as the youngest of four boys. My parents or brothers never treated me any differently. I never expected them to treat me any different. I had, and still do have, a very close relationship with my family.

I do not have any learning/cognitive disabilities. In fact, I was always smart. The only problems that I have had educationally were my own fault.

I was in the physically impaired program from kindergarten thru my senior year of high school. In school, I was mainstreamed, meaning that although I was officially in the physically impaired program, I attended regular classes just as everyone else did. I always had a resource room available to me at anytime, for whatever the reason may have been.

In elementary school, which I loved by the way, I had a supportive physically impaired teacher that told me to do the best that I can, to the best of my ability, NOT disability. I have continued that my entire life and I am truly grateful for the wonderful support system that I have had my entire life. The support system that I had included my parents and family, schoolteachers, physical therapist, occupational therapist, and a host of doctors in many different specialties.

School was somewhat hard for me especially in middle and high school. I could have been an A+ student, but other students as well as teachers were not always patient with my limitations. I would do anything to fit in with a group of kids and this got me into trouble more than once.

As a young child, I can remember the way other children would look at me and stare because of the way that I walked. There were many times that my schoolmates would laugh at me and call me names simply because of their lack of understanding of why I was a little different, especially back in the mid 70s and early 80s. Children then were just unwilling to take the time to learn why one of their classmates might walk, speak or seem noticeably different from them.

I have complete feeling in my legs going all the way down to my feet. I have no feeling below my ankles, though. Therefore, if I stepped on a nail, I would not feel it. I can move my legs, bend, and squat, kneel, crouch, etc. About the only thing I do not have, the flexibility to do is sit "Indian style." I walk with the aid of ankle foot orthotics (AFO’s). I do not have a lot of coordination when walking without them. Walking with my AFO’s comes easily to me, and I go up and down steps without any problem -- I am just a little slower. I am fiercely independent and, unless I look like I am really struggling, please do not ask me if I want any help.

My balance is different causing me to walk with a limp. I benefit from wearing ankle braces because my ankles are not very strong and my right foot turns in when I walk. I have had several orthopedic surgeries to correct certain conditions, one of those being a clubbed foot. I have an extremely hard time trying to get shoes that fit right over my braces. They do not make the shoes for this, and if they do, they are usually so large or ugly that it is an embarrassment to wear them.

Now...the potentially embarrassing stuff -- regarding other problems that are mentioned in the "textbook" explanations of spina bifida... Not only does it affect the function of the legs, but it also has an impact on the kidneys, causing them to deteriorate. I do have some bladder problems. When I get the urge to go, I REALLY have to go. On a lighter note, I am probably the only person you will know who can tell you where every public bathroom is located in the State of Kansas. (Just kidding!)

Spina bifida is not life shortening. Most people with this disability live a normal life span, can give birth to children, and lead active lives as long as they take care of themselves and not let the medical problems that they are born with deteriorate or cause additional problems. Many people born with spina bifida are wheelchair users because of more limited mobility. I am one of the more fortunate ones who have been walking since the normal age that most kids learn to walk. Only difference is that I learned to walk with little crutches. I did wear metal leg braces during the early part of my life to assist me with learning how to walk and to help straighten and strengthen my legs and muscles.

Like most teenagers, I learned to drive when I was 17, and passed my driver's test the FIRST time. I learned to drive without hand controls. For my safety however, my car is now equipped with hand controls, which can be purchased and installed on any kind of car with power steering. The hand controls do not replace the foot pedals on my car, which means that an "able-bodied" person can also drive my car the "normal" way.

I seldom had a difficult time finding something to do on a Friday or Saturday night. Usually that included going to a scouting campout. I joined the Tiger Cubs at the age of six and went clear thru Boy Scouts until I earned my Eagle Scout rank at the age of 15.

Though I have not really dated before, I recall having many friends  Therefore, for me, in my younger years, hanging out was a pleasure. I generally had no problems with it. Were there people that did not want to hang out with me? Sure there were! I would be kidding you if I did not tell you that I knew of people who would not hang out me because I had a disability. There will always be people out there looking for a tall, muscular, nice looking person, but that will never be me! From my perspective, I consider that a blessing, because it weeds out the jerks from the truly nice people.

Why would I want to hang out with people who only wanted a hot looking person on his shoulder, when I could really hang out someone who liked me for me, exactly the way I am? As we all eventually come to learn, outward appearances fade, but the personality and heart of a person are usually what stay with us throughout our lives.