I was born with something called Spina Bifida. It's a birth defect that affects the spine. Most of you have probably heard of it in the media- recently they discovered that pregnant women can prevent this disease by taking folic acid, so every product that has folic acid in it is advertising that. Spina Bifida is by no means a uniform disease, because every child born with it is affected differently. As far as I know most babies born with this disease never walk or function normally. That's why people tend to be surprised when I tell them I have Spina Bifida. However, there are some babies born with such mild cases it is almost undetectable, and no one realizes they have the disease until they get into their late 20's and 30's and their body, their nerves, their bones start to rapidly stop working, stop holding up.

I was born in between. Not mild because they could tell I had it, but I was kicking when I came out of my mother, so they knew that I had some movement in my legs; I was not paralyzed.

Two weeks after birth I underwent the first of many operations that were to come- a ground breaking procedure in which the neurosurgeons opened my back up by a horizontal incision on the small of my back from one side to the other, unraveled a "tumor" full of knotted nerves at the base of my spine and "plugged" each nerve back into my spine. I was one of the very first babies to have this procedure done, so the specifics of my case and of the surgery were recorded in the New England Journal of Medicine, and because it was such a "success" it is now the protocol for all babies born with mild-mid Spina Bifida.

The doctors didn't know if I would walk, but my parents never told me otherwise. They prayed that I would walk, and at average age I suddenly pulled myself up and began to stand, and then walk. Actually what happened was that my parents put an Elton John album on the record player, and left the room for a minute. When they returned I had pulled myself up and was holding on to the table, dancing to "Crocodile Rock". Everyone was overjoyed and I was never told that that was even a fear. I grew up with the knowledge that I could walk like everyone else, when it was really a miracle.

The doctors knew that some part of my body would eventually be affected by this disease. They were sure it would have to do with nerves and with bone structure. I was "lucky" because it settled in my left foot, instead of one of my major organs or my upper legs or arms. 

 

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