A conversation starter

For those who might not have seen my picture, this is me. I have always been told I "view the world differently" and the way I see my hydrocephalus is the perfect example. Over my 53 years, I have never seen it as something to be ashamed of, but something I was proud of AND a great conversation starter. I have lost track of the number of times I have sat down in a restaurant, at the bus stop, etc. and the person next would ask what caused it. I love to talk about my "hydro" and help people to understand not only what causes it, but also that it doesn't automatically make a person retarded. (I add the latter at some point in my discussion because there have been more people than I can count who assumed that it made me a real-life version of "Baby Huey".)

As I was just telling a fellow hydrocephalus survivor, we have to use such experiences as a teachable moment. Over the years I have explained to people that it IS NOT (emphasis added) like a contagious disease that can be passed from one person to another or that it DOES NOT (emphasis added) an evil or sinister person. Another one that was related to me by my grandparents were comments made to them when I was growing up about "God must be punishing you for [fill in the blank] sin". No, it's not a punishment either; it is a congenital birth defect that caused the ventricles in my brain to not properly develop.

Another way that I am different as far as my perspective of my hydrocephalus is that I welcome people who want to touch my head. For the most part - especially if the person is in the medical field - I know what they are wanting to feel and that's whether I have a shunt (pictured at right). I don't but, again, it opens the pathway to educating them about the condition. Education is key because, according to the Hydrocephalus Association one to two babies in every 1,000 are born with hydrocephalus making it as prevalent as Down syndrome and more common (emphasis added) than either spina bifida or brain tumors. Even so, there is currently no cure for hydrocephalus, so it is imperative that people learn about it and join the bandwagon to find a cure.