Stand and Deliver

Hydrocephalus Teens Take Charge Advisory Councilby Madeleine Darowiche

Even though I have had hydrocephalus my entire life, I normally choose not to tell people about my condition. I am always afraid of how individuals will react because many people have never heard of it, let alone know what it really is. I guess I was kind of embarrassed, too, about having a condition people have rarely heard of. That all changed after I attended the Hydrocephalus Association’s (HA) 12th National Conference on Hydrocephalus last year. I learned that hydrocephalus was nothing to be ashamed of, and I should spread awareness about the condition. The conference gave me the exact confidence I needed to do just that. I was ready… ready to tell people what hydrocephalus is and the side effects I deal with as a result of it.

Well, fast forward to the beginning of the school year and being asked that inevitable question of, “What did you do over the summer?” With confidence and courage, I was able to tell people how I have had seven brain surgeries and that I often suffer from math difficulties, social anxiety, and problems deciphering social cues. Needless to say, they were pretty surprised at the thought that I had several brain surgeries.

The reactions I witnessed to their learning about hydrocephalus were mixed. Some people were rather intrigued and listened intently with interest. And others? Well, maybe they were a little scared or did not know how to respond and react, but they were apathetic and did not really seem to care. However, a few months back, I had my most favorite reaction.

I wear a shunt pin on my school ID lanyard, and oftentimes, people never are curious about it, or if they are, they just don’t ask about it. I was sitting in one of my classes and was doing some work with a few other people. They noticed the pin and asked about it. That launched me into the typical descriptions given about hydrocephalus, such as it being excess cerebrospinal fluid (CSF) within the brain. After I had explained all that, they still seemed interested, and they asked if I have any other side effects. I proceeded to explain my social difficulties, and then it was my turn to be surprised. I know my social skills have improved since when they first met me during my freshman year of high school, but I did not think others noticed. Well, they did, and they told me how much better I have gotten since then. This all occurred towards the end of junior year, which I have since completed with flying colors. I was able to triumph over math issues as well because I had a great teacher and I never gave up. I finished with an A+!

So, to any of you teens out there struggling socially or academically, please remember this, you can do it! Never give up! The struggles will not last forever.