Looking Back…Moving Forward: It Doesn’t Make Us Different…It Makes Us Stronger

Wyatt_conference 2Our 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.

 

TTC Advisory Council Group Photo - 2 Wyatt_conference 6

 

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!”

Read the blogs Wyatt has participated in over the last couple of years:

Hydrocephalus Teens Take Charge – Wyatt Speaks Up!

TTC Members Speak Up About Stress

Teens Take Charge Speaks Up About Bullying

October is National Bullying Prevention Month

 

Wyatt and Pip_conference Wyatt_conference 3 Wyatt_conference 4

 

 

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3 Responses to “Looking Back…Moving Forward: It Doesn’t Make Us Different…It Makes Us Stronger”
  1. Fiona Wilcox says:

    Hello Wyatt! My name is Fiona Wilcox. I also was fortunate to attend the conference last summer, where I heard you on the intergenerational panel. That week sparked my interest in TTC.

    I’m also a teen with hydrocephalus, and I am always looking to connect with people who share that. Unfortunately, I don’t have a Facebook, so I have no way of being able to really talk to other teens. What do you suggest? Email? Cell phones? Some other method of social networking? The HA has a Google+ page, and I also have one, but they’ve never utilized it for connection purposes.

    If you want to drop me a line, comment me here and HA will make sure to exchange our contact information.

    I enjoy reading your blog posts.

    Thank you!

    Fiona

  2. Raisa lane says:

    Hi :) I’m Raisa and to be perfectly honest I did not know there were other people like me till I was 14 and a kid named Brian lost his sight because of the pressure building on his brain at a young age . . Than I got on Facebook because social media is the popular thing right now I am so used to interacting with doctors and nurses that I grew up faster than my classmates . . It really makes me feel amazing that there is a whole association of people like me and that know how I feel to be living with this condition and to be close to moving out on my own I found hope in reading this story and many others . . Now for my story I guess my shunt was placed when I was 14days old at just 1pound I was an extreme premie at 24weeks in the 90s none the less . . I grew up with no problems with my shunt till I was 12yrs old my shunt snapped in my neck from growing and well that summer I had 9brain surgeries and in the past 6yrs I have had 21shunt related surgeries and I lived to tell the story as normal as my classmates without medical problems college is my next battle and well personal realationships but I am stronger than I look
    Inspire , change ,love and Grow
    Love -Raisa
    Thanks for reading my extremely long comment I still hope to talk to someone like me soon Facebook is amazing lol

  3. shavanna springfield says:

    hello my name is shavanna i have a daughter she will be a year old september 19 i was sitting here in tears until i read this page i looked at your pictures and read every word of your page i know now that as long as i put my mind to it and keep the faith for my little girl she will be able to do anything it’s people like you and my little baby girl that make me want to wake up hold my head high smile and l and live to see another day and for that i want to tell you thank you from the bottom of my heart

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