Looking Back…Moving Forward: Adding a Touch of Pixie Dust

As we continue our interview series commemorating our 30th anniversary, this week we sit down with Tina Daniels, the Hydrocephalus Association’s (HA) support group leader in Owasso, Oklahoma. Tina was born with hydrocephalus and shortly after birth had a shunt inserted. Aside from headaches and eye issues, the condition does not affect her very much. As she states “I am actually one of the ones who has never had a shunt revision!” Tina shares her experiences leading a support group and words of wisdom for caregivers and individuals living with hydrocephalus.

HA: How did you find HA and why did you decide to volunteer and start a support group?

TINA: I blame this all on social media! On a whim, I started looking up people who posted about hydrocephalus on Twitter and Facebook, and found one or two who volunteered with the HA. When I asked them about it, they encouraged me to see if there was support group here in my town, Owasso, Oklahoma. Of course, there was not, so against my better judgment (I’m very much an introvert sometimes) I contacted the Hydrocephalus Association about starting a support group.

HA: What do you think the value of support groups and social gatherings are for the hydrocephalus community?

TINA: I think they are fabulous. Mine here is very small, but even still. I would have LOVED something like this growing up with the condition. I did not meet anyone with it until I was in college and neither did my parents. They did not talk very much about hydrocephalus, but from conversations I’ve had with my mom now that I am an “adult,” I know that it was really hard for them, dealing with it. I think even if they would have had one family to talk to, that it could have made it so much easier. It would not have been such an alien a concept.

HA: What is your favorite memory from a past meeting?

TINA: Honestly, my favorite things about the meetings are just getting together. I think one that sticks out in my mind was a meeting where everything was going wrong. The church we met in gave me the wrong key; we were running late, it had been one thing after the other. We ended up foregoing all our plans, and playing volleyball in the church’s activity room. The meeting started out as a nightmare, but it was one of our best evenings.

HA: What do you love most about being a support group leader?

TINA: Oh, my goodness. It is a love hate relationship. My favorite thing has to be when someone tells me how I have helped them out, or how they have not known anyone with hydrocephalus before, and how much they appreciate that they do now. Really, nothing beats it. Especially those times when you are stressed over details like attendance or what to do for the next meeting. Sometimes you just need to hear that what you are doing matters. All the bells and whistles, they do not necessarily matter like you think they do.

HA: Are you currently participating in any other awareness or fund raising events for hydrocephalus and the Hydrocephalus Association?

TINA: Yes. I have actually started to do a lot lately. I have joined up with Project Brain Drain to do Mohawk Madness. Every participant is raising money for their favorite hydrocephalus organization, mine of course, being the Hydrocephalus Association. If we meet our goal by October 31st, then we get a purple mohawk. The thought being, that the extreme hairstyle will spark conversations, especially in people with hydrocephalus, because it will show off the shunt scars!

I have also started Project Pixie Dust. We work with co-players and character actors to make video messages from pop culture characters to children with hydrocephalus. The idea is that parents can show their kids these videos, and they will feel more at ease with their condition. Often, the kids at school and even teachers do not know what the condition is, or anything about it. However, if characters the children see on TV and in movies seem to be familiar with the condition, maybe it will not seem so scary.

HA: What would you say to someone who wants to help and become involved, but is hesitant to take that first step?

TINA: I would say, go for it. Honestly, I’m STILL hesitant. You may not ever feel comfortable doing it. I hate calling people and meeting people I do not know. I do not speak well in front of groups, but it does not seem to matter. Most people will just be glad to have someone else to talk to. It does not have to be anything fancy. Our core group is 5 people. Sometimes it is less, sometimes it is more. But if it were not for the support group, we would not know each other at all.

HA: Where would you like to see HA 5 years from now?

TINA: Tricky question! I would like to see more research. The research may not be focused on a cure necessarily, but better treatment methods. Shunts and ETVs are great, but they are not ideal. Surely there has to be something better out there. We just have not figured it out yet. I would also like to see more awareness…a lot of awareness! I would also like to see HA educate people in the medical field. A lot of families in my support group mention that they do not feel comfortable talking with their care team, or that they do not communicate well. It should not be that way at all! There is a lot for us to do!

HA: What advice do you have for other individuals in the hydrocephalus community?

TINA: My advice for someone who is in a family affected by hydrocephalus is to have patience…lots of patience. Also, to realize that even though one of their family members has this condition, they are not defined by it, and they probably are not as fragile as they look. My dad and brother were terrified to let me learn how to walk. They were afraid I would fall, and hit my shunt. As a result, I did not walk until I was two years old. So, just keep in mind that while hydrocephalus is a serious condition, there is more to that person than their condition.

HA: What would you say to someone who was newly diagnosed?

TINA: Do not be scared. It is not as bad as it seems. Google, but do not believe everything you read. And be wary of Google image searching. People like to post extreme pictures. Also, unfortunately, you will need a pretty strong backbone. Sometimes people joke pretty carelessly on social media about hydrocephalus. So, help and good people are there, but you may have to wade through some inconsiderate folks to find it. Do not give up!