Adventurer of the Week: Epilepsy advocate Kara Lynn Sampson

Kara Lynn Sampson of Olympia hopes to promote epilepsy awareness and her foundation by paddling from Seattle to Boston Harbor Sept. 16-18.
Kara Lynn Sampson of Olympia hopes to promote epilepsy awareness and her foundation by paddling from Seattle to Boston Harbor Sept. 16-18. Courtesy

On Sept. 16, Olympia’s Kara Lynn Sampson plans to launch a kayak from Seattle’s Golden Gardens Park and paddle nearly 60 miles to Boston Harbor.

Sampson, 33, expects to finish the adventure in three days. She doesn’t have much kayaking experience and will have a support boat at her side as she navigates frequently used routes along the Cascadia Marine Trail.

The adventure is light-years beyond what Sampson would have dreamed of attempting when she was growing up in Shelton.

Sampson has epilepsy and grew up believing athletic endeavors were something for other people.

“It kind of took over my life for a long time,” Sampson said of epilepsy. “I never felt normal, or like I could keep up with anybody else. I didn’t feel like anybody liked me.”

It was in dealing with these feeling that Sampson found her purpose. “To help people struggling with that same thing,” she said.

Three years ago, she started an organization to provide modified experiences for kids with epilepsy, experiences they aren’t likely to do otherwise. “Kind of a mini Make-A-Wish (Foundation),” Sampson said.

It’s an expensive endeavor, Sampson said, and the Kara Lynn Foundation is currently working on its third experience. In October it plans to take an Atlanta girl for a swim in the shark tank at the Georgia Aquarium.

The purpose of the Seattle-to-Olympia paddle is to raise money for the foundation and awareness of the misunderstandings surrounding epilepsy. Sampson, who also designs clothing and other items stamped with the slogan “Be kind. Be true. Be strong. Be you,” says all of the money raised by her trip will go to the foundation.

Today, Sampson controls her epilepsy through diet and lifestyle choices. She hasn’t had a seizure for about 18 months.

Sampson recently took a few minutes to field a few questions about her journey and her passion:

Q: So why kayaking, if you don’t have a lot of experience?

A: I always try to do things that are outside the box to show these kids and their families that just because you have epilepsy doesn’t mean you can’t do it. … I think it shows people to never discount your abilities.

Q: What sort of training are you doing?

A: I haven’t gone really far, but I’ve been out in Puget Sound doing self-rescue and learning paddle techniques. My longest day was about 10 miles. I’ve never kayaked out on the Sound in tides or rough waters. I have taken my boat to places with rough waters to practice.

Q: Is there a particular stretch of the trip that makes you nervous?

A: The (Tacoma) Narrows. … There are obviously always concerns, but I feel like I’m going about it as safely as possible. I am an example to a lot of people so I wouldn’t do it if I wasn’t confident.

Q: How hard was it for you to come to grips with living with epilepsy?

A: As a teenager I missed out on driving, my first job and sports. … Then I was into my 20s and I still had that mindset that there was nothing I could do. I can’t work. I can’t have a relationship. I can’t drive. I got my license when I was 23 and started to work, but I just had no confidence.

I felt like there was this light on me all of the time. Everybody knew I was different, and for some reason it bothered me.

My grandfather died a few years back. He was one of my biggest supporters, along with my parents. I just had this come-to-Jesus moment. Obviously what I’m doing isn’t working. I just decided to make a lot of changes. The first thing was just accepting myself. Then everything started to change.

… Just being confident (is important). Just because you have whatever it is you might have, it doesn’t make you any less of a person. I think people go through life thinking that too much.

Q: So is it fair to say combating bullying seems to go hand-in-hand with your mission to raise awareness about epilepsy?

A: People don’t understand, and some are so mean about it. It’s something I’m passionate about changing. There is a stigma on epilepsy because it’s invisible.

People look at me, and they wouldn’t know. That’s something I want to work hard on changing.

I think a lot of people assume we are faking it. Or I think people minimize what epilepsy does entail. They think it is just a seizure. There are a lot of jokes about what to do when somebody has a seizure that could end up killing somebody. Like sticking something in somebody’s mouth. Or that it’s contagious.

There are so many jokes about it when it is a life-threatening, very serious disease.

Q: What else would you like to say about your work?

A: I just think that the most important thing is awareness. Understanding not to be afraid. Be aware and know how to react. And to the kids who have it, don’t be ashamed of it. And don’t hide it because it could save your life (if people know).

Send nominations for Adventurer of the Week to chill@thenewstribune.com

Kara Lynn Foundation

Living with epilepsy, Kara Lynn Sampson has made it her mission to help others deal with the disease. She is paddling from Seattle to Olympia to raise awareness of epilepsy and funds for her organization, the Kara Lynn Foundation. karalynnfoundation.com