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Her Story: I Have a Life-Changing Neurological Disorder

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I underwent my first brain surgery at fifteen days old. And since then I have had six more. Five of those six surgeries happened before I was even four years old. By the time I was five, I had had more brain surgeries than birthdays.

To most people, that may seem like a lot, but when it comes to someone with hydrocephalus, it is pretty much the norm. It isn't unusual for someone to have undergone more than 50 brain surgeries. My last one took place when I was eleven years old, but that doesn't mean I’m home free. There is no telling as to whether I will have to have another one. I never know if it will fail again or not, and only time will tell.

At fifteen weeks gestation, I was diagnosed with hydrocephalus, a medical condition characterized by excess spinal fluid in the brain. The most common way to treat this condition is to insert a shunt, a device that helps drain the fluid to another part of the body. Most shunts fail within the first two years; they have the highest failure rate of any device that is medically implanted. Shunt failure means brain surgery because that is the only way to insert another shunt. Mine failed within a few months of the initial placement, so I went back in for another brain surgery. I wasn't even a year old.

However, I do not let the uncertainty in my health stop me in anything I have wanted to do, including attending college several hours away from home. To be completely honest, it’s not the uncertainty that is the most difficult thing to live with; it’s the various challenges with which hydrocephalus comes.

One of the primary difficulties I face is the challenge I experience in social situations. I am often unable to interpret sarcasm or know how to respond to it, sometimes making it hard to really communicate with my peers especially because sarcasm can be so present in friendships and in people’s personalities. I also struggle to make eye contact with others, which can make it seem as if I do not care about what other people are saying. Another thing that is tough is reading people. There are times where I will truly have no idea as to whether people are being genuinely nice or not. I became aware of these issues shortly after starting high school, and actually being aware of them has affected me because I am more cautious in approaching people and getting to know them. Fortunately, I’ve never been bullied—I don’t think it’s even that obvious to other people that I am having these difficulties. Instead, I’m harder on myself than others are in social situations. I am a little self-conscious because I worry that I might say something wrong or make no sense, and that people will find me strange, but I know I can't let that stop me from living my life.

Regardless, the situation definitely does make it hard for me to form friendships, especially here in college, but I manage as best as I can because I know these problems won't be going away anytime soon. I have learned to adjust to all the changes of college despite the extra challenges that I deal with. I’m working on worrying less about what other people think of me. In the grand scheme of things, their opinions really don't matter. What makes things hard for me, I think, is that I can never truly tell what people are thinking of me. Most of the time, it is that people really are being nice, but it can be hard to recognize that without questioning if they’re faking it or not.

The challenges I face are not just social, but spatial as well. I can’t read maps, and if I go somewhere one time, I probably won’t be able to get there again—I need to visit the same place multiple times before remembering how to get back. Most of the time, I need somebody to actually take me where I need to go. Even just trying to locate a restroom in a restaurant—or getting back to the table—can be a challenge. To a lot of people, this can be funny, but to me it’s anything but humorous. I end up wandering around until I figure out where I am, but it’s always embarrassing. Most of the time, I leave earlier than I need to for class, so I have time to find my way if I do get lost.

Lastly, I also face academic challenges. I have a hard time with math—difficulties that extend outside the normal realm of hating the subject. It doesn't matter how many times something gets explained to me; sometimes I'm honestly never going to understand some of the more complex concepts, such as those in geometry. Sometimes, it can seem that I am not even trying to learn something at all when in fact I have been working diligently to understand. But I just can't get it, no matter how hard I work. This is hard on me because I’m a perfectionist and want to understand it all. College has taught me that that will not always be possible.

As cliché as it sounds, I can only do my best, and I can't do it all every time. I haven’t let this affect my future plans, though—and fortunately, my career goals don’t involve a field that requires math. I aspire to become a special education teacher because I want to make a difference for students who are facing similar or other challenges. I know that I will teach students who face much larger obstacles than I have, but I hope to inspire them and let them know that through patience, persistence, and hard work, many of their goals can be achieved.

Living with a lifelong medical condition has taught me so much throughout the course of my life, and I know that just because I am in college now, I will never stop learning from hydrocephalus. One of the most important lessons I’ve learned is that we should all be more empathetic and less judgmental towards other people.

Hydrocephalus has also taught me what I am truly capable of. I never even dreamed that I could get an A in math, but that was exactly what I did my last two years of high school. I'm also proud of myself for attending college several hours away from home, my comfort zone. I was pretty quiet and never really talked in high school, but during my senior year, there came a time that was a good chance to tell my entire class about why I was the way I was, so I took that opportunity. And let me just say, speaking in front of peers is not easy, especially for me, but I was able to do it. I was so overwhelmed at the response. Everyone was so kind and accepting.

In college, I have tried to be pretty open about my experiences. It is tough to tell people about hydrocephalus because people never really know what it is and I don’t know what their reaction will be. I do it because I want to spread awareness about it. My mindset is, if I don't spread the word, who will? Hydrocephalus definitely is a large part of the person I am today, but it is not the complete me. I will never let it define my abilities or me. It will not deter me in my future aspirations and goals.

 

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