Rafael, 27

My life is made up of fragment memories. Pieces of places I’ve lived in, hospitals I stayed at, people I fell in love with, friends and family I wish were always at an arm’s reach. A constant variable in this jigsaw puzzle of a life is hydrocephalus, a condition that I’ve lived with since I was a baby.

The memory of the day my mother took me to the doctor for an occasional medical check-up and I was told, for the first time, that I had a VP shunt in my head is vivid. I liked the idea of being different, although I didn’t know how exactly so. I knew there was something in my brain that other people didn’t have, and that was a little detail to hold on to. I proudly informed friends, on occasion, about my uniqueness. There was something magical about that little bump on the back of my head and the peculiar spots on brain scans.

Fragmented memories that I do not cherish, however, are those of hospital stays for shunt revisions. I’ve spent enough time in both Brazilian and American hospitals to qualify for a Master’s Degree in Comparative Hospital Studies, or at least a certificate. It saddens me to know that other people with hydrocephalus have spent way more time in boring hospital rooms than I did, in some cases, more brain surgeries than birthday parties.

It wasn’t until recently that I started to search for information about hydrocephalus, especially communities of people who have experienced the condition first or second-hand. Reading others’ stories of struggle and success, accounts of obstacles and achievements, has inspired me to embrace my own fluid narrative: hydrocephalus is, and has always been, part of who I am. It’s in my motor clumsiness and my often hyperverbal communication. It’s in the headaches and my poor sense of direction.

But hydrocephalus is also in my creativity. During long hospital stays for shunt revisions, entire worlds and narratives would appear on my mind. Some of them have been written down. Others were given meaning in the moment and eliminated with the previous shunt. What remains is the concept and the drive to tell a story. I have within myself no better story to tell others than a messy concept for a videogame.

Narratives always grab us by the hand and take us somewhere. We can imagine constant, coherent places that we wish were our own, when the reality is that no, you can’t be a boxer a footballer. One can wish, though, and tell a story, part real and part desired, in the hopes that people will recognize themselves in you, as you have in some of them.

Twenty-seven years of age, three shunt revisions and counting.

Rafael Leonardo da Silva is a PhD student in Learning, Design, and Technology at the University of Georgia. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus. A video demonstration of the video game prototype can be found HERE


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