Our Teens Take Charge (TTC) Advisory Council is made up of eight articulate, creative, enthusiastic teenagers who are ready and willing to take a stand against hydrocephalus. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with TTC Advisory Council member Wyatt Barris to talk about TTC, the Hydrocephalus Association (HA), and his message to the world about living with hydrocephalus.
HA: How did you find the Hydrocephalus Association?
WYATT: I found HA through a conference I attended at the Children’s Hospital & Research Center Oakland. I met HA’s Director of Education and Support, Karima Roumila. She sparked my interest in the association. Once I got a Facebook account, I regained contact with HA. They asked me to do a blog for their new program, Teens Take Charge, and I was so honored. I thought, “Wow, a nationwide association wants me to do a blog for them?! I am so proud!” (Hydrocephalus Teens Take Charge – Wyatt Speaks Up!)
HA: How has HA made an impact on your life?
WYATT: It has made me realize what I can do with my life. When I was a kid, like any other kid, I thought “Oh, I want to be a chef or an astronaut.” It was not until I got involved with HA and the Teens Take Charge program that I discovered my career path. I want to go into biological sciences to help find a cure for hydrocephalus.
HA: What is your favorite HA memory from one of the HA-sponsored events you’ve attended?
WYATT: My favorite memory is meeting my fellow TTC Advisory Council members in person this past summer at HA’s 12th National Conference on Hydrocephalus. It was awesome meeting the people that I had talked with through Facebook and over the phone. I truly felt like I was a part of something upon meeting everybody. It felt like a tight-knit family.
HA: Wow. It seems as if TTC has been an important part of your life. Why did you decide to join TTC and how have you been involved with the program?
WYATT: I decided to join TTC because it was something that gave teens and young adults a voice. We are an important part of the hydrocephalus community. Teens have a chance to say, “Hey! I have hydrocephalus, and this is my story behind it.” We can get connected to other people our age and share our experiences.
I am a member of the Teens Take Charge Advisory Council and I feel it is one of my greatest accomplishments. When I found out that I had the opportunity, I literally jumped out of my chair with excitement. TTC has changed my life so much. Just being a part of a group that accomplishes so much with the hydrocephalus community and working with Jennifer Bechard (HA’s Support Group Liaison and Teens Take Charge Mentor) is something I cherish so much. Since I joined TTC, I have participated in numerous activities nationally and locally with my fellow council members. Last year, I spoke on two panel sessions at HA’s National Conference on Hydrocephalus and participated in HA’s advocacy day. I have written many blogs for TTC and have played an active role on TTC’s Facebook page. Locally, I walked in my hometown parade last year for HA and TTC and plan to again this year. I have also hosted educational discussions on hydrocephalus in the classroom at my high school to raise awareness and educate my peers and faculty members. With the help of my fellow TTC Advisory Council members, I am trying to put a book together of dozens and dozens of stories about people with hydrocephalus. It could give everyone an idea of what hydrocephalus is and what life is like for people living with hydrocephalus.
HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?
WYATT: Anything that spreads awareness is the most impactful; getting people to know what hydrocephalus is and what life is like for people affected by hydrocephalus is very important. It tells people what hydrocephalus is so that they cannot say, “You are a person with medical conditions, so obviously you are inferior.” I don’t want anyone with hydrocephalus to ever feel like that. I was bullied for my condition for a while and I never want anyone to feel prejudiced against because they have a condition. It doesn’t make us different, it makes us normal. It makes us stronger. Spreading awareness is important for these reasons.
HA: What else would you like to see HA do in the future?
WYATT: I would like to see HA go global. People are not just affected by hydrocephalus in America; people are affected that live across the planet – in Europe, Asia, etc.
HA: What message do you have for the general public about yourself and living with hydrocephalus?
WYATT: I am just one cog in a big machine that helps to spread awareness.
HA: What message do you have for individuals your age living with hydrocephalus?
WYATT: We are not weak; we are stronger than we appear. I frequently say that phrase, “we are stronger than we appear.” At the conference where I met Karima, there was a five year old girl with both hydrocephalus and cerebral palsy. She was also partially deaf and completely blind. Yet, she was trying her best to move around the convention center and engage with everyone. I saw this young five year old with all of those problems have a positive attitude and not be afraid to try to say hello and be herself. It made me realize that it was silly for me to wallow and be depressed about my condition. I had to be strong.
HA: What are some of the biggest challenges you overcame as a result of living with hydrocephalus?
WYATT: Honestly, the fear. Not just my fear, but my family’s fear. The first shunt treatment I had when I was twenty days old lasted for twelve years…then all of the sudden it just stopped. All of my doctors did not know why it malfunctioned; they just knew that I was hemorrhaging behind my optic nerve. My mom was very upset, but I had to comfort her and put aside my fear to help and provide emotional support. I had to help my family through it.
HA: Is there anything you’d like to say to the staff, Board, and/or founding members of HA?
WYATT: For both the staff and the Board of HA, I can only say keep doing what you are doing because you are doing a great job…you keep HA running… you guys are amazing!
To the founding members, all I can really do is thank them. I met the majority of the founding members at the 12th National Conference on Hydrocephalus. I met Pip Marks. She was so kind. If it was not for her and the other founding members, HA would not be here. Without HA, would anyone else have stood up and taken charge of an association dedicated to hydrocephalus? We need this for our families; we need this for other people’s families…all I can do is say “thank you!”