This past week I messaged some questions to Clio Lang who I became friends with just by doing a zoom call with others like myself, who have Hydrocephalus. I reached out to her on one of the lives she was doing on her social media and asked her if she would like to be interviewed for my blog, so that I could help share her story. She said yes, and so I sent her some questions, and now here is Her Story for all of you to read. I hope that as you read Her Story that you will be inspired by it, just like I have been.
Q. When were you first diagnosed with Hydrocephalus?
A. I was diagnosed with Hydrocephalus in infancy.
Q. How did people, like family or your doctors help you to learn and understand about what you had?
A. I didn't understand what I had and how it could actually affect my entire life if my shunt failed until I was 23.
Q. Is there ever or has there been a time that you felt like you didn't belong or fit in because of what you went through? If so, what is something that you wished people knew now, that they didn't know before?
A. I always felt like I didn't fit in, because I was bullied in grade school but eventually was admitted in regular classes in junior high. People need to understand that having a shunt is a barrier. You can't see it but it's there and it HURTS.
Q. What are some things you dealt with in school, that you had trouble with?
A. In school, I had trouble with comprehension and math. Omg I hated math.
Q. Would you say that you had trouble with making friends?
A. Being introverted since childhood made me shy but eventually I would make close friendships with people.
Q. How have you overcome different things that you may have struggled with growing up and how do you face those struggles that may have been difficult for you growing up to now?
A. I've overcome codependency because having a shunt and multiple brain surgeries forced me to advocate for myself. My biological parents didn't want me or my sister so were were adopted. It was very difficult.
Q. Do you ever feel like you couldn't always share what you went through growing up with your peers because they didn't understand?
A. Nobody understood what a shunt or hydro was. If I even spoke about it with previous romantic relationships; I'd get this confused look as if I spoke another language. So I stopped talking about it.
Q. Is there a time when you wished you knew someone who could relate to what you went through and could share the same experiences?
A. I found the Hydrocephalus Association in 2017; before then, I knew no one else with hydro.
Q, How has being able to know there are others who have Hydrocephalus and how has it helped you be able to share your story with others?
A. Now, I've built close relations with other hydro warriors! It has shaped me into being an activist now to spread awareness on Hydrocephalus.
Q. What do you hope people learn from when they read your story?
A. People should learn that hydro is more common than Down Syndrome and is the leading cause of brain surgery in children.
Q. Finally, is there one thing that you wish people knew more about you and what you went through growing up, and now that they didn't know before?
A. Some people have enlarged heads; not everyone looks the same but we do suffer and are constantly overshadowed by other invisible illnesses. Hydrocephalus is actually an ancient condition that should have widespread knowledge.
