Names in Stone – Living with Hydrocephalus

Hello friends.  Here’s the latest entry from our newest contributor (and youngest!), Emily.  She is bravely sharing a lifelong struggle with all of you in the hopes of creating awareness and understanding of this serious issue. Let’s all be supportive of this amazing young woman.

            At the university I currently attend, one of the traditions they have is carving students’ names in stone once they graduate. When I heard of this, I was immediately intrigued. What better way to commemorate your college experience than by having your name forever a part of the campus? It got me thinking- how can I leave my mark on the world? 

            As a college student, there are many things I have to think about. School, my sorority, my friends and family, but I also have to think about my health. Over the years, I have been very lucky to have not had a ton of setbacks from my hydrocephalus. However, since coming to college, I am not all that symptom free. 

            I still get muscle aches from the cerebral palsy. This is enough of a problem that I went ahead and registered with my campuses Center for Disability. I strongly encourage all college students with any type of disability- whether it be learning or mental- to register with their disability center on campus. It has given me the sense of security I needed being away from home. I also still get headaches. They are mostly stress related and very mild, but they are there. My shunt has not given me any major trouble for the last 16 years, so I am very thankful for that. Despite all of the thankfulness, I do feel that I am meant to leave a mark.

            Having hydrocephalus does not make me different from everyone else. It does not make me “disabled”, it does not make me “special needs.” It makes me unique. I have a condition that not a lot of people know about, and I can educate them about it. I have had many instances since coming to college where I have had to explain what hydrocephalus is. I am meant to spread awareness. I want people to know that it is not a burden that you need to carry. While it can be a struggle, hydrocephalus has not changed me as a person. I am still the same as every other 19 year old college freshman. I still go out and hang out with my friends, I still go to classes, I still attend football games. I am in no way different. Yet, I am different. I am different in that I am a fighter.

Hydrocephalus is something I fight every single day and will continue to do so every day of my life. I do not let it hold me back. I do not let it define me. I take every day with a smile on my face and thank God that I opened my eyes at all. When I wake up in the morning and take my first breath, I thank God. When I get out of bed and walk to class, I thank God. When I am able to pay attention and focus during class, I thank God. When I am out doing fun things with my friends, I thank God. I am who I am because of my condition. I do not let it run my life. When my name gets written in stone four years from now, I hope to have impacted people not because I have hydrocephalus, but because I was able to make a difference in someone’s life.