Do you downplay your hydrocephalus?

My hydro sister, Celeste Daniels, asks an interesting question in her blog earlier today: do those of us with hydrocephalus ever underplay our condition and, if so, does that cause people to react to you differently? Once I got old enough to intelligently discuss it, I would tell people the truth . . . that it was a serious condition and that it had the potential to be fatal under the right circumstances. It wasn't until twenty-two (22) months ago that I learned that my dad had downplayed my explanation telling my siblings "There's nothing really wrong with your brother. He just has a big head". Why did he do this? I think Celeste explained it best when she said that some people and, apparently my dad is one of them, are so ignorant that they can't and won't ever reach an acceptable level of understanding or compassion. I could espouse another theory I have, but I will leave that for another time.

Like Celeste, I try not to emphasize my hydro day in and day out although my larger-than-normal head size sells me out. I think that is, in large part (pun intended) to the fact that my family probably would have little or no interest in anything I might say because daddy has convinced them that it's "just a big head" and nothing more. I wonder what they will say in September when I have an endoscopic third ventriculostomy to relieve persistent symptoms including visual disturbances and, often debilitating, vertigo. I can only wonder after the surgery is done if they will that the condition I have lived with for the past 55 years - with the past 21 months being symptomatic - could have taken me from them?