Tuesday, April 8, 2008
Over the many years of knowing about, living with and having surgeries for a Chiari Malformation and it's secondary complications, I have experienced the usual funny look on people's faces when I talk about it. Then the questions and comments: "What is that?" "I've never heard of that." Over the years, I have had the "privilege" of knowing only two other people with a Chiari malformation. One was a past neighbor friend's son and the other is the daughter of a woman who recently joined the moms group I belong to. Her daughter also has spina bifida, which is not uncommon in Chiari patients. However, the other day Motorcycle Guy came home and said he saw one of those magnetic ribbons on a car that said "Cure Chiari." Then on Sunday, I saw a minivan from Indiana that had the same ribbon and a sticker for Conquer Chiari. I wanted to pull up next to this van and roll down my window and scream "I am a Chiari survivor!" Ok, maybe not those words exactly, but I wanted to talk to this family and see what their experience is with Chiari. Really, I just wanted to hear their story. To have a "disease" that is not common or heard of can be hard and only adds to the challenges. No support groups, no learning from other's experiences, no vast research to determine the best course of treatment. I hope with these ribbons and bumper stickers, that will change for future "survivors." I hope I can help in some way.