From Traumatic Brain Injury To Nonprofit VICTORY!

Meg: Thank you. Thank you for having me.

Toby: Tell us just a little bit about yourself. What’s your background? How did you get into the world of philanthropy and creating a really cool organization that we’re going to learn about today?

Meg: Well, I am just the average Nebraskan girl. I grew up in Lincoln and went to nursing school. I became a nurse so that’s my…

Toby: Are you a Cornhusker?

Meg: Of course.

Toby: Oh my God, all right.

Meg: “We’re going to do it this year. We’re going to do it this year.” I say that every year. We’re going to do it. I’m a registered nurse, but I also suffer from the after-results of a traumatic brain injury in 1998, was in a coma and on life support, and did physical and occupational therapy. That was freshman year of high school. I fully recovered physically and had some mental challenges, but did graduate high school and made it into nursing school. That’s where I started having seizures.

From that, came a long journey of dealing with my epilepsy, not being able to find a cure with medications. I had brain surgery where they removed the part of my brain with the scar tissue from the traumatic brain injury. Thank goodness, life has been pretty good since then and I’ve been seizure free. I volunteered at a camp for kids with cancer in California way back when in college. I saw what a true value it made for families and for kids with cancer to come together. It just inspired me to create a similar experience for kids and teens with epilepsy in the Midwest.

Toby: That’s pretty darn cool. I’m just going to give you a plug right off the bat that this is the Midwest You Can Foundation, right? Midwest You Can?

Meg: Yeah, because so many times with epilepsy, we’re reminded of what we can’t do. No more sports, no more driving. We wanted to create a place where kids can come together and see all that they can do despite their epilepsy. That’s kind of where the name came from.

Toby: You go to midwestyoucan.org if you want to actually check it out. It’s actually really cool, you have a bunch of camps where you’re bringing folks in. Epilepsy is your main area?

Meg: Yeah, that’s our main area.

Toby: That’s because you had the personal experience of having to go through this.

Meg: Right.

Toby: Now, was it a car accident that occurred?

Meg: Yeah.

Toby: How long were you in a coma for?

Meg: That was in 1998 on the way home from school. Car accident and a traumatic brain injury. I was in a coma for six days.

Toby: Your poor parents.

Meg: Yeah, I know. Now being a mom myself, I just can’t imagine that happening to one of my kids, walk in them in a coma on a ventilator. But I did wake up six days later, and then was told that I had a traumatic brain injury.

Toby: How did that register with you? Was it something where it took awhile for it really to hit what that actually meant, and some of the things that were going to happen? What was that like?

Meg: I always say that when I woke up not knowing where I was, but I saw my family, recognized them, and then I always joke that my mom handed me a mirror, and I saw that my worst nightmare had come true. As a freshman in high school, my hair was messed up. They had to shave a part of my head after the car accident, to monitor the pressure in my brain. As a 14-year-old, I was super bummed, but then I was also relieved that after what they explained with such a serious accident, all that it changed was my hair, but I had no idea what was brewing inside, and what those side effects were going to be.

Toby: Again, I’m just a tax lawyer guy, but I deal with a lot of clients in different scenarios. I’ve always seen that when you have traumatic events occur in one’s life, that either shapes you or you use it to shape yourself. When were the first real manifestations of the epilepsy? When did you even know that you were having epileptic episodes? Because sometimes, you don’t even know you’re having them, right?

Meg: Yeah, and that’s the thing. After the traumatic brain injury, it left some scar tissue on my brain from the TBI, so not until 10 years later did my seizures start. The doctors have just said that bruising on your brain and the signals in your brain were just starting to get a little off, and that’s when the seizures started. Not until 10 years later after the car accident did the seizures start.

Toby: Did they try surgery or anything like that? How were they treating this?

Meg: Yeah, they put me on a medication right away. I’ve never been on a daily medication before, so it’s kind of tough to get used to it at first, but I just kept having seizure after seizure. Then they added another medication. I kept having seizure after seizure. I got up to four medications at their maximum dose. It was about 20 pills a day. That’s when my doctor told me, “You know what? You need to consider something else to treat your epilepsy,” and that’s when he told me about brain surgery.

Toby: I actually used to have a business partner who had grand mal seizures. She would take medicines and she says, it was the worst thing. About once a year, they tinker with the medications. She said, “I just felt like a zombie.” Did you experience…

Meg: Yeah, that exactly. I would say I don’t know what’s worse, the medication or the seizures, because I was in la-la land all day on those medications just like you said. You’re dizzy, trouble focusing, and the doctor just said, “If you had brain surgery and it worked, we could lower some of your medications so you’re not on so many.”

Toby: Did it work?

Meg: That was a pro actually. They went in there, they removed the scar tissue from the 1998 traumatic brain injury, closed me back up. They always explain it as something so simple, but it’s really you know, traumatic about it for me. But the surgery did work and I’ve been seizure-free.

Toby: Wow, that’s awesome.

Meg: Yeah, since 2001.

Toby: You were about 24 when you had your first seizure?

Meg: Yeah.

Toby: Were you in school?

Meg: Yeah. Maybe it was a little bit, I was about 22 or so. Yeah, actually the first seizure that happened—we always say seizures like to make their entrance at the most inopportune times—I was up in front of my class in nursing school, giving a presentation.

Toby: Did your injury the reason you went into nursing? Or what was the reason you went into nursing?

Meg: Yeah, that was the main reason. I just saw what an impact nurses can have on patients, just taking that extra time out during their day. Also, my mom is a nurse. I saw her day in and day out, what meaning she got from nursing, and just the stories that she would come home with, after a day of work.

Toby: That’s brutal wasn’t it? It’s brutal to become a nurse.

Meg: Yeah, it is, the schooling. I always joke with friends that were advertising majors. We’d be doing our 10-hour nursing day, and clinicals.

Toby: You’re going through that and you’re having seizures at that time, they start to surface.

Meg: Yeah.

Toby: Oh my goodness and right in the middle of a 10-hour day, all of a sudden you have the… What would it be like? This isn’t fall-down seizure. A lot of people think of seizures, somebody will actually fall on the ground, lose control, things like that. Is that what this is or is it something different?

Meg: No, you’re right. That’s the seizure that everybody else thinks of, but mine were complex partial. That’s why it was kind of hard for me to believe that they actually were seizures. I thought it was anxiety. My heart would start to race. I’d be kind of swallow and it would be hard to swallow, but then when people saw me have them, they said they saw my left arm raise up in the air when a seizure happen, and I wouldn’t be able to answer when someone was talking to me. And just not having control of the seizures, just knowing that it could happen any time. That’s just really got to me. They say the emotional impact of epilepsy is right up there with the physical aspect.

Toby: I want to let everybody know that’s listening, you actually did a TED Talk. If you don’t know what a TED Talk is, they’re pretty darn awesome. You did a TED Talk on this, right?

Meg: Yes.

Toby: What was that like?

Meg: They say you share your story and I remember we had a TED coach that kind of helped us. she said, “The lower you can go or the most vulnerable you can make yourself, the more you’re going to relate to people.” So working with her, just peeling off, and being able to express to the audience of 500 what it was like to have a TBI, have epilepsy, the difficulties that did come along and continue to come along for the both of us.

Toby: If anybody ever says, “Hey, my life’s hard,” call you up, right?

Meg: Exactly. I’m a good one to call. We could send them the TED Talk. Hopefully, people can relate, because I would have loved to hear someone at the TED Talk express their feelings.

Toby: Did you work with anybody that had epilepsy that was trying to help, because a lot of folks don’t realize again, Camp You Can, you’re doing these camps for people with epilepsy. You’re obviously giving back. Were you inspired to do that because somebody was working with you that had epilepsy, to help you in your recovery?

Meg: My family was so supportive and the doctors and stuff, but I really got the idea from the cancer camp that I volunteered at in college, in California. It was there where I saw the true value of bringing a group of kids together.

Toby: You just decided, “I want to do this Camp You Can. I want to help kids with epilepsy,” and what is it? They’re going out and they’re doing all sorts of stuff that anybody would do in a camping outfit?

Meg: Yeah. These are kids ages 7-17 with epilepsy and they’re coming together to do the zip line, the rock wall, shooting bow and arrows, catching fish, going in the boat. It’s more the parents, too, that I see how much that it makes an impact on them. Because so many times, they’re reminded of the things that their kids can’t do. This is just a place where parents can come together and leave their kids in a safe environment since we have nurse like myself there, we have a physician at camp, so parents can feel safe dropping off their kids.

The kids can see all that they can do, that their friends who go to a summer camp, now they can go back to school and share what it was like for them to go on the zip line. They’re just feeling really empowered at camp and able to relate to others. That’s what I want them to get out of camp. To find that they’re not alone with epilepsy.

Toby: It’s pretty amazing that you first-off decided to do this. I hate to go into the finances and stuff like that, but I looked at it and say you were doing this and you are killing it. You weren’t like making tons and tons of money, you were doing this because it was something you honestly just wanted to give back. Is that correct?

Meg: Yeah. It gives me meaning and purpose, too.

Toby: Yeah. When you first started doing the camps, did you go out and set up your own organization or did you work with somebody else? How did you go about actually creating the Camp You Can experience?

Meg: I started out just by asking a local organization if they could help us publicize the camp, if we can run along with them. For about the first four years or so, we ran under another nonprofit. Donors wanted to come in and donate money. For tax purposes, they could use this other foundation’s tax ID number, which I had no idea what tax ID number is for. I had no idea about any of this, so hat was a good learning experience before starting our own.

Toby: How did that learning experience go? Did you find that you were getting all the benefit of all the moneys you were raising or was it going elsewhere?

Meg: All of it was going towards camp to keep camp going. We like to keep camp as affordable as possible for families. I know myself how pricey epilepsy can be. We try to keep camp, very low for families. All of our fundraising was coming in and going straight out to camp. In which I wanted it to do, that’s what I wanted it to be used for.

Toby: Then you broke off and did your own. Why did you break off and do your own?

Meg: Well thanks to you and encouragement from other people. We just wanted to be able to make our own decisions regarding what we do with the money and what we do as far as activities, and just that we can call it our own and still work alongside of the other nonprofit, and the other resources for people with epilepsy in Nebraska. But we just kind of wanted our own to make decisions, to take in generous donations, and I heard that starting our own was the way to do that.

Toby: Just to give some pretext and I’ll let everybody know. I met Meg from a referral from a client who said, “You have to help Meg. She’s doing something really cool and she’s getting some bad advice,” at least he thought that the other organization was taking a little bit of advantage and that they were maybe not necessarily allowing you to grow to the extent that you could. A lot of folks are under the impression that they can’t do anything and that these things are ungodly expensive.  If you’re willing to give us an idea of what you are, like were you a rich person, or were you making a ton of money when you decided to do this, or were you just an average person? Just give people kind of some context.

Meg: That’s a good point. Just to give some background, I was about making under $10,000 a year when I got this whole thing started. I myself thought that it would cost a lot to get a nonprofit started, but with resources and with your generous help and support…

Toby: Let’s just put it into context. How long did it take you to raise more now than you made before you set something up? Is it easier to raise the money for the organization now?

Meg: Yes, it’s a lot easier having our own 501(c)(3). We can tell donors, “This is directly where your finances are going and you can claim it during tax season,” but yeah, we’re making about double what I came in with the 501(c)(3).

Toby: It’s just because other people are willing to get behind it now.

Meg: Exactly and our fundraiser.

Toby: Tell me about your fundraiser. What do you do to raise money for your foundation?

Meg: Before this year, we were just doing generous donations from companies, drug companies that wanted to give, local healthcare facilities that wanted to give, but this year, we decided to have an epilepsy walk. We got a large crowd coming in for that. That and our other generous donations this past year had been about $25,000 or more. That’s like, woo-hoo to us, to us small nonprofit. I know to bigger nonprofits it’s like, “Oh man, that’s a little,” but to us…

Toby: You’ll look back in 20 years and you’ll laugh about where you came from.

Meg: Yeah.

Toby: What would you tell to somebody who’s sitting at home, or listening to this in the gym, or something else and they’re thinking, “I would never be able to go out and raise money,” or maybe it’s veterans, maybe it’s somebody who was affected by suicide, maybe you saw somebody who is a mom abused who had to flee a bad situation, or you have a heart for the homeless, or the extreme poor. What would you tell to that person about what they’re able to do?

Meg: If you find the right resources and you have the passion, you’re able to meet the right people that are as equally supportive of your cause, and just working together as a team. I had no idea how far you can go. Just believing in yourself and then it goes right back to Camp You Can, us seeing all that you can do. Just the people that you named, I think people who are experiencing it themselves are oftentimes the greatest starters of the nonprofit, because the passion is already there. The ability to be able to empathize with the population that you’re working with, already there. It’s just bringing in the funds to keep you going. I think they’re already qualified for the job, because of their personal experience. Then comes just the fundraising and I never knew how far I could take this without your help.

Toby: You don’t have to pitch me, that’s for sure.

Meg: No, I know, but you’ve been awesome.

Toby: I appreciate that. What I just look at is there’s a lot of folks sitting on the sidelines and we’re all surrounded by those people that tell us everything that we can’t do, how it’s going to be a failure, and you’re going to fail. I always call them crabs. They’re going to pull you right back into the crab box. If you’ve ever seen somebody who crabs, they don’t have to put a lid on the little box where they store all the crabs, because the crabs won’t let themselves out of the box. As soon as one is poking its head up and is about to get out, the other one is grabbing its legs and pull them right back.

The world is surrounded by that. We know that. We’re bombarded with limiting beliefs and people telling us, “No, you can’t do that.” What would you say to that person? Like if you just speak directly to somebody. Imagine that they’re sitting on their couch and they’re like, “I really want to do something that changes the world. I really feel like I want to help,” again, you could fill in the blank. “Maybe I just want to help other families. It’s like you, maybe I want to help the children and their families understand something.” What would you say to that person?

Meg: I would just say, believe in yourself. Start with an idea and believe in yourself and then just find the right people to help you achieve your goal. You’ll never know unless you ask is something that I’m learning. You’ll never know if somebody will want to join your board unless you ask. You’ll never know if someone will want to be a camp counselor, because you got to ask them first. That’s something that I am learning, that asking for help is a good thing to do. A good leadership role is the ability to ask for help. I’m learning that, to ask for help. Just believing in yourself, that you can start something. Even if it impacts one person’s life or impacts a million lives, it’s been really healing for me to be able to start the foundation and show people what they can do.

Toby: You get pretty excited about going and doing this? Is it something that gets you up in the morning where you’re actually looking forward to, “Hey, I’m going to go out to teach at camp.”

Meg: Yeah. This is like my new passion. It gives me worth and meaning because I was a nurse, but that’s been difficult to get back into because of the areas of the brain that were affected by my epilepsy. This is my new passion and giving me a purpose and meaning, because I can’t go back to what I always thought I would be doing. Doing this sort of thing has brought a lot of healing to me and my family, too.

Toby: A lot of silver linings.

Meg: Exactly.

Toby: That’s pretty amazing. I’ll step back just for one second. A lot of folks think that when you’re doing a nonprofit, it’s just tax reasons. There are some fantastic tax reasons to do a nonprofit, but you got to have the passion towards something. You can raise money or you can raise time, so I assume that some people give money and some people give time.

Meg: Exactly.

Toby: Let’s talk about the time. Who gives time to you and what did they do?

Meg: We recruit just like you said, camp counselors. We get about 25 college students or older that just want to help. They just want to help kids. They have some free time in the summer. Some have medical background. We get a big group of volunteer camp counselors. We get nurses that want to come in and help the campers while at camp. We even have a physician as a nurse. That’s amazing to find a physician. Just getting the public involved and volunteers is just awesome.

Toby: This is completely aside, but since you’re in the realm of epilepsy. I have a daughter, I think I told you this. She graduated in neuroscience and she really wants to study the brain. She always looks at it and says, “The brain is one of the few areas where we don’t do a physical evaluation of it when diagnosing issues.” What type of changes has the medical community made? Is this something where they’re actually embracing, “Hey, there’s a chance that we can heal some of the damage that’s been done to the brain”? You always hear stem cells, you always hear about different treatments and things like that. Is this something where they’re making strides?

Meg: Yes. I think with epilepsy, one of the main strides is putting it out. Letting the public know what a seizure is, what epilepsy is. Already, I think that’s a huge stride, just to get rid of the stigma of epilepsy. Yeah, there are new treatments coming out. Back in the day, it used to be medication. That’s about all you got. Now, we have other options like surgery. There are various other ones that people are now able to do to help with their seizures. We’ve seen campers come to camp who take medications. Some campers have had surgery. It’s neat that the parents can come together and get ideas about other treatments, too.

Toby: Fantastic. I really appreciate you coming. Again, I’m going to say go to midwestyoucan.org. Learn all about the Midwest You Can Foundation. Obviously there’s on the website, I’m looking at right now. There’s areas where you can donate, but you could also volunteer. Again, it’s money and time. If you don’t have money, don’t feel like you can’t participate and make a difference. Sometimes, you’re on the journey in life where you’re trying to figure out what direction you want to take. Maybe it’s time to go volunteer a little bit. This is what other people are doing and get some ideas there. Are you looking for volunteers?

Meg: Yeah, we’re always looking for volunteers. As our camp continues to grow, the more volunteers we need. If anyone is interested in being a Camp You Can Volunteer, we can always use them.

Toby: That’s perfect. Thank you so much for joining me today Meg. Again, I’m just going to say, I’ll put a link up on the TED talk so they can see all your story. I can see it shine on the big stage. Also, please visit our website. If nothing else, realize that we can certainly all use a little kick in the butt to get us moving and that rarely are we disappointed when we go out and we do things that we’re passionate about. Thanks again Meg for joining us.

Meg: Yes, thank you for having me. I really appreciate your support.

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