From fishing to ziplining to arts-and-crafts, summer camp gives kids the chance to just be kids. For children impacted by epilepsy, Camp YouCan meshes these classic summertime activities with support groups in a stigma-free environment.
Meg Busing, founder of the Midwest YouCan Foundation, was inspired to create this positive environment after fighting her own battle with epilepsy. She developed post-traumatic epilepsy five years after suffering a traumatic brain injury.
While on her journey to find seizure control, Meg volunteered at a summer camp for children with cancer. This inspired Meg to create a new camp experience, where kids with epilepsy can be active and talk about their condition openly with peers.
Learn more about the stigma surrounding epilepsy, how it can impact people with epilepsy, and what the research says we can do to reduce stigma in a free webinar from Citizens United for Research in Epilepsy (CURE).
Kelly Cervantes: I’m Kelly Cervantes, and this is Seizing Life, a weekly podcast produced by Citizens United for Research in Epilepsy, CURE.
Kelly Cervantes: Our guest today is Meg Busing, a TEDx speaker and the founder of the Midwest YouCan Foundation. She started the foundation in 2011 with her husband after she had brain surgery to stop her out-of-control seizures. The mission of Midwest YouCan is to empower children with epilepsy by focusing on all the amazing things that they can achieve. Today, Meg shares with us how her summer camp helps children with epilepsy build self-confidence, develop meaningful relationships, and discover a world of dreams they can achieve. Thank you, Meg, so much for joining us today.
Meg Busing: Thank you for having me.
Kelly Cervantes: Before we start talking about your incredible summer camp for children with epilepsy, I want to talk about you and your journey. Give us a brief overview of how you got here.
Meg Busing: It all started on March 6, 1998. I was a freshman in high school when, on a car ride home with some girlfriends, the car spun around and hit a tree. That was the start of all this. I had a traumatic brain injury. My head went through the window and hit the tree. I was unconscious and ended up in the emergency room. For the next six days, I was in a coma on a ventilator. They weren’t really sure how I was going to come out of that, but I did finally wake up and was told that I had a traumatic brain injury. I went on to the local rehab hospital, and it was there where I saw what the effects of a traumatic brain injury actually were.
Kelly Cervantes: What were those effects for you?
Meg Busing: The physical therapy part of rehab went great. I could still walk and ride the bike, but it was in speech therapy where I was trying to think of words and having trouble. They would point to a pen, and I couldn’t remember what the word was. They asked me to put a 10-piece puzzle together, one that my five-year-old could do. I wasn’t able to put it together. It was at that point when I realized, okay, this is what a traumatic brain injury is.
Kelly Cervantes: How long was it from the car accident until you had your first seizure?
Meg Busing: I was able to finish high school and got into college. It was about five years after the traumatic brain injury that seizures started.
Kelly Cervantes: Which is just insane to think about, that you went through all of that therapy.
Meg Busing: Yes.
Kelly Cervantes: You’ve mentioned in other videos that I’ve seen that you still worked with some short-term memory loss and things like that. You’re going on and you’re living your life, and then five years later, relatively out of the blue, you’re battling post-traumatic epilepsy.
Meg Busing: Right. I made it into nursing school, which was always a huge goal of mine because my mom is a nurse, my grandma is a nurse, and a lot of aunts are nurses, so that was always my dream. I made it into nursing school and, during my second semester there, I was giving a presentation in front of class and noticed my heart started racing really fast. I thought, “Well, maybe this is nerves.” But I don’t get super nervous. Then I was having trouble breathing, or taking deep breaths, and I kind of started to stare off into space, unable to look away from the left side of the room. I could feel my lips smacking, and my hand was starting to raise in the air, so I tried to gather myself. It seemed like forever, but really it was probably only five seconds long. I tried to gather myself and then was able to finish my presentation.
Kelly Cervantes: Oh my word.
Meg Busing: Yeah. It was after that, and thank goodness it was a nursing school, that my instructor came up to me and said, “You know what Meg, I don’t know if that was anxiety. You might want to get this checked out because I could foresee this maybe being a seizure.”
Kelly Cervantes: How fortunate that you were in nursing school.
Meg Busing: Yeah, in nursing school really.
Kelly Cervantes: There was someone who could recognize that in you and not just write it off. So you were able to address it rather quickly.
Meg Busing: I was able to get in to a neurologist, but I had no idea what a seizure was, what epilepsy was. I had never heard of it, and that’s when he told me, “Meg, you’ve had two or more seizures, so therefore you have epilepsy.” So that was kind of a shock hearing that. It was just this short five- to 10-second thing that happened to me, and it had happened about three more times before I went into the doctor. So, it was a shock to hear that I could actually have epilepsy and be automatically put on medication. Something about an epilepsy diagnosis is it’s like your life has changed in a second. Where you always thought you were going to go, it’s kind of turned right back around.
Kelly Cervantes: How did the seizures impact your life?
Meg Busing: In a lot of ways. It started affecting me in nursing school. I was having seizures, and, after a seizure in the postictal state, I just got so tired and wanted to lay down and go to sleep. Therefore, I was falling behind in nursing school, so I had to slow down my program. The seizures persisted, so I was put on three additional seizure medications.
Kelly Cervantes: All with their own side effects, I’m sure.
Meg Busing: Yeah, each one has its own side effect. Then you’re on four of them at the maximum dose, about 20 pills a day.
Kelly Cervantes: Oh my gosh.
Meg Busing: And the seizures weren’t stopping. They just kept coming. So I did make it through nursing school, luckily with the help of amazing teachers. I became a registered nurse and started my first nursing job. But I continued to have seizures.
Kelly Cervantes: You have now been seizure-free for how many years?
Meg Busing: About eight years.
Kelly Cervantes: Congratulations.
Meg Busing: Thank you.
Kelly Cervantes: That’s very exciting, and it was all due to brain surgery?
Meg Busing: To brain surgery. The doctor told me, “Meg, we don’t have a lot more medications for you to try, and we think you’re a very good surgical candidate. We’ll just remove the part of your brain with the scar tissue from your 1998 traumatic brain injury in hopes that your seizures will stop.”
Kelly Cervantes: Sounds very similar to a gentleman, Howard Zwirn, who I interviewed on a previous episode.
Meg Busing: Yes.
Kelly Cervantes: About the brain surgery … it’s so amazing for the people that it works for. It really works for those who are candidates.
Meg Busing: Right.
Kelly Cervantes: So, you come out on this other side, and I clearly understand your being inspired by your journey and the desire to want to help others, but why a summer camp?
Meg Busing: I had volunteered at a camp for kids with cancer in California before nursing school started. I saw how truly valuable it was bringing a group of kids together who really understood each other’s illness.
Kelly Cervantes: So you have this idea, thinking, “You know what? I want to make a camp for kids with epilepsy.” Then you do. But there was a lot of work that had to happen in the middle.
Meg Busing: Yes.
Kelly Cervantes: What did that look like? How did you get from point A to point B?
Meg Busing: I just kind of looked for local resources and went ahead and found a supportive group of people who really helped me navigate the 501(c)(3) process. We started out under a different non-profit who really led and guided us on the way to build ourselves up so that we were able to brand off on our own. They were just amazing in helping us take in donations and getting the small stuff done. As a nurse, you know, I don’t know what goes on behind the scenes of businesses and non-profits. So it’s been a huge learning experience for me. Then, as we continued, in about the fourth year of camp, we branched off and started our own 501(c)(3).
Kelly Cervantes: What is the age range of those who are attending the camp?
Meg Busing: From 7 to 17.
Kelly Cervantes: Are most of the children who attend mainstreamed in their schools, or are you working with some kids who also have learning or developmental disabilities as well?
Meg Busing: Both, yeah, but most of them are mainstreamed in schools, but they do have assistance. Our criteria are that they are able to feed themselves and to shower or take a bath by themselves, to be able to meet activities and daily living.
Kelly Cervantes: What does a day at camp look like for the YouCan campers?
Meg Busing: They wake up and go to breakfast with their fellow campers. Then they just spend the day with amazing volunteer camp counselors who take them to all of their activities. Some of them will start out fishing or boating, or on the ropes course or the zip line. We have archery. We have arts and crafts, and we also have a teen discussion group where they can talk about what it’s like to have epilepsy. Because, with epilepsy, it takes a physical toll on people, but it also takes an emotional toll, especially on kids.
Kelly Cervantes: Which is something that you mention on your website, about the mental well-being of these kids and how being in camp can really help them. What are some of the things that you’ve seen and heard being
with these kids, hearing their stories, and how has camp impacted them?
Meg Busing: I think that the biggest impact I’ve seen is just them making those friendships that last a lifetime and helping them understand that they aren’t alone. Sometimes these kids are the only ones in their whole school that have epilepsy, and they feel so isolated and alone. It’s the same for the parents. That’s why I’m so grateful for social media, because we are able to connect with so many of our families and know that they have a safe place to go to ask questions. It’s just so neat to watch their friendships grow and develop. They all meet on that first day of camp, and they all kind of hang out in their little shell and are kind of nervous about going and meeting other people. Then, by the end of the week, they’re crying because they have to leave their new best friends and counting down the days until next summer.
Kelly Cervantes: Aw, that’s wonderful. What about the counselors and the staff at the camp? How do you go about finding those people, and what type of training is involved?
Meg Busing: Our camp is very volunteer-based. We put out an application in the wintertime and have college students, some professionals, some teachers apply. It’s usually about 25 to 30 applications, and then we end up picking the best ones that we think would best suit our kids. They come to a weekend-long training in the spring where we take them through different seizure types, and the right procedures to handle them. But most importantly, we teach them to treat the kids as kids and not as someone who has epilepsy. Sometimes we get camp counselors who say, “I didn’t realize how normal they are.” They’re just like every other kid.
Kelly Cervantes: How can our audience learn more about the camp and get involved with what you’re doing?
Meg Busing: The best way is to visit our website at MidwestYouCan.org. There, we have information about how you can volunteer, donate, and apply for camp.
Kelly Cervantes: Meg, thank you so much for taking the time to speak with us today and for all the incredible work you’re doing for kids with epilepsy.
Meg Busing: Thank you so much for having me.
Kelly Cervantes: Thank you again, Meg, for sharing how we can provide life-affirming experiences for children with epilepsy. It is so important that we focus on the amazing gifts and abilities that children with epilepsy have, instead of letting them feel isolated because of this horrible condition. To learn more about how to separate stigma from truth, watch our webinar on epilepsy stigma at CUREepilepsy.org/EpilepsyStigma. Please visit @seizinglifepodcast on Facebook and Instagram and @seizinglifepod on Twitter. Finally, you can sign up for information about upcoming podcasts, or listen to past episodes by visiting seizinglife.org.
Disclosure: The opinions expressed in this podcast do not necessarily reflect the views of CURE. The information contained here is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with the patient’s physicians or other qualified health care professionals who are familiar with the individual’s specific health situation.