Kerry McQuone: Epilepsy Advocate and Business Professional

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hey everyone, welcome to the show and happy National Epilepsy Awareness Month. You all know I live with epilepsy, so this is very personal to me. Me and 1 in 26 people will have epilepsy in their lifetime. So first, oh my goodness, we went from 17 countries to— hold on— 27 countries with listeners. 27. And you'll never believe the country that has the most listeners, of course, after the United States is Germany. And that must be because my mother was German and English. No, I don't know why, but boy, thank you, all of you with disabilities living in Germany listening right now to the show. It means so much to me, as all the other countries like Peru. All these new countries are listening, and that is just fabulous. I always say though, even if it's a country with one listener, like Saudi Arabia, one listener can make a difference. You can go to other people and say, "Hey, listen, there is a show. It is great. It is about people with disabilities like us." and get that news out. One person, one person can make a difference. Hey, special shout out to Richard in Brazil. Richard, Richard Roberts, I met when I first went to South Korea, and he is with the State Department. Then when I went to Japan, he was in Japan, and I'm going to tell you, he became like a disability rights leader He was getting more fired up than I ever anticipated when we were in both of those countries and started to get angry if people weren't doing the right thing. He would tell me, okay, you know, we have to be careful here. We don't want to offend this anyone in South Korea. And then he would get mad and I would say, remember what you told me, Richard? Richard, I love you and I can't wait to see you. Here in the United States, and Gangyong-cho in South Korea. Hello to you, and really to all of the countries I've been to, from Indonesia to Kazakhstan to Panama. You know, I love you all, all of you in the State Department. And my special shout out to Yoshiko Dart. Hello, Yoshiko. Yoshiko, Happy Thanksgiving to you. Thank you for your leadership. Of course, Yoshiko's husband passed away. His name was Justin Dart Jr., the great general and disability rights leader. Love you so much, Yoshiko. We always have to thank our sponsor, Highmark. Highmark is the sponsor of this show and they have been for a long time, the lead sponsor. Such a great company they are. David Holmberg, Karen Hanlon, Mick Malek, Larry Kliman, all— Deb Rice, all of them are so awesome. So thank you, thank you, thank you. Our guest today, oh, I am so excited to have Carrie on. Carrie is the Chief Marketing Officer at Gray Matter I have to make sure. Is it McCune?

McEwen? Yes.

McEwen. Oh, there we go. Okay. Carrie McEwen, chief marketing officer at Gray Matter. But from when I met her, I liked her. She has like— I had like an affinity of spirits with her. And she is just so classy and such an advocate and cares so much. And I'm proud to say, as you know, I'm the chair of the local Epilepsy Association of Western and Central PA, and Carrie is on my board. She is so awesome. But Carrie, now you see, for a long time I was saying, as Perry knows, 17 countries. Yes, so many countries. 27. Yes.

I feel so global, the region.

Yeah, you are, Joyce. Think about that. They're hearing you in Germany, Russia, Peru, which is good because you know what? In many of those countries, you can't even say the word epilepsy. That's what you were saying. I say to all of you, I'm living with epilepsy and I'm not ashamed, and neither should you be ashamed. But anyway, what happens, Perry, is listeners will say, wow, that person was great, but I don't know anything about them. So I ask everyone to tell their story, you know, like where you grew up and went on to school. So let's hear your story, Carrie.

Okay, great. Well, first of all, Joyce Bender, thank you so much for having me. It's been a true pleasure and light for me to be partnering with you on all things epilepsy and advocacy. So I really appreciate being invited, and I'm honored to be on the show with the great reach it has and to be dipping into all of these issues. What you do is really inspiring. So thank you for having me on. A little bit about my story. I am from Sewickley, Pennsylvania. It's a small town outside of Pittsburgh. I grew up in Sewickley and I'm back in Sewickley after a tour of many different spots. Um, I went to Quaker Valley High School and then I went to the University of Virginia. That was a big impression on my life. It's where I studied and fell in love with broadcast journalism, and that was the beginning of my career. I started after the University of Virginia to work for NBC News, the Washington bureau. My first year out of college there was a really exciting news year. We had JFK Jr.'s plane crash in Martha's Vineyard almost a few days after I started. There was the Starr investigation of President Clinton. It was just a hotbed of news the summer that I started there. So I really developed a great love of news and eventually wanted to report myself. So in doing that, you have to learn to be gritty and live in small towns and edit your equipment and manage yourself and manage your day very quickly. And it's really something that I think is at the base and core of who I am. That training really helped me become a stronger person and really empathetic to people that have had bad crimes happen to them very tragically and have had to deal with things that— like their house burning down. And, you know, you speak with them moments after that and there's really nothing worse that you can understand once you've talked to someone who's had that happen. So news really gave me a great deal of empathy. Um, for others, but it also taught me to battle. It taught me that I had to get interviews quickly, I had to get my work done fast, um, and research and, and deliver the expectations every day. So I moved around to a bunch of different cities doing reporting, ultimately ending up back in Pittsburgh where I launched into news management after I had my children. And that was a little more audience content, how are they receiving what we're sending, um, leadership coaching, how can we consume digital media, that type of thing, which is really a new chapter for me at this point. And I also fell in love with that, and that landed me more into the marketing side of things. So when I decided to leave news, which wasn't for lack of love of news, it was just the right time in my life. To be done with the car and the houses and, and local news chapter. But I wanted to do something similar and metric-oriented and audience and storytelling-oriented, and that was marketing. So I got a great opportunity and I launched into Gray Matter where I'm the chief marketing officer, building their brand and story for the company.

You know what? Kerry, I'm glad we got you back here. Yeah, I'm glad. Yeah, because if you had gone to CNN or somewhere, we probably never would have seen you again. But I'm glad to have you back right here in, uh, Pittsburgh. So tell us about Gray Matter. What is Gray Matter? Uh, what services do you offer? What is your role? And how do I know that everyone, when they think about your company, would think about the brain? Great.

You know, it's right. It's about data and how it's received. And your brain is receiving all this information. And what are you doing with it? And how are you reacting? That is actually very spot on, Joyce. That's exactly what we do. If you think of it like a Whoop that I'm wearing or a Fitbit or an Apple Watch that you might use to collect the data on your body, well, we do that for manufacturing companies and the equipment within those companies.

We track all of that.

Our software software consulting and technology services really help manufacturers understand, oh, just like your Whoop told you you didn't get enough sleep last night, is there a machine that's not working? It's not making the jelly as fast as it should be. It's not helping the diaper line produce like it should. So it's really about digitizing these manufacturing operations, making sure the data that those machines are sending are getting back to operators like you and me so they can understand it and do things that will help the world get their needs faster, like toilet paper, like peanut butter and jelly Uncrustables, like Tide and things that you need every day that we make. Those machines and operations need to learn how to operate faster in a digitized way, and Gray Matter does that for them.

So does that mean you go in and install software or hardware or both hardware and software? And what were they doing before they met you?

Well, before, their data wasn't quite connected. It's a little bit like maybe it was in an Excel spreadsheet. Maybe someone on the plant floor kept a clipboard with some data on the operations and what was going on. And you're right. It's a little bit of software, sometimes hardware if the data's not collected. But first you have to create that connectivity through sensors throughout the operations. And then the software brings that data to life through dashboards and starts to pull it in so that you can make decisions with it. And ultimately it's like an airport dashboard. That's the ideal within those facilities so that the operators can walk in and see, how things are doing, where they need to pay the most attention, and what's maximizing production for them?

Wow. Well, all I can think of is I went to Procter Gamble because they were working with us, and we went to the Tide plant. And when we went there, I walk into this huge facility. This will show you how old I am. I said, where are all the people? This huge space, it seemed like they had only 5 people because, of course, from when that tide came out to when it got to the store, no hands touched it. I mean, this was like this robotic, you know, phenomena. But I guess that would be the type of thing you get involved with.

It is. It's, you know, a company like that is very forward thinking. They want to— the goal is to make things faster and and better. You know, companies that are making dog food, they want to make a healthier dog food with less water weight because that's what's required right now. So there are a lot of things they're aiming to do. They want to be more sustainable, make sure their factories have the best energy. These are all things that they have to use digital technologies to keep up with and to help them actually know how they're operating as is, like you're talking about with the Tide thing.

Yeah. Right, that is really interesting. So that's a job a lot of people with disabilities could do, Carrie. Now that you've told me this, my mind's already going here. Well, we're talking today though about epilepsy for National Epilepsy Awareness Month. So tell me, What is your connection?

My connection with epilepsy is my son, Makmar. He is 13 years old, and a few years ago, he had a very, very scary seizure. My husband and I were shocked and didn't know what it was. We thought something was happening with his heart. He turned blue. It was horrifying for us. We called 911. We then went through a very long journey of trying to determine what had happened. He has a form of sleep epilepsy, so he has seizures waking from sleep. It's not that common, and it took a while to decide what exactly it was. Was it some type of sleep-related disease as opposed to epilepsy? But We eventually did figure that out, and it's just had a huge impact on our life. I mean, it impacts us all the time. The other day, you know, we were— he takes medicine in the morning and in the afternoon, and we're always running around and busy. And did he take the morning medicine? He forgot it. Someone has to race that to school. It's, it's a huge impact for us. And so I wanted to just be more involved. I don't— I didn't have a finger on exactly what I could do more, but I just thought with connecting and learning and getting out there and getting more involved, that that would be good for our family and for Mac and for other people that may have similar circumstances to his.

Well, I want to talk about that more, but right now we're going to go to commercial break. Hey, if you just joined in, we're talking to Carrie McKeown. From gray matter, more importantly connected to epilepsy. Your son, is his name Jacob? I'm trying to remember. Mac. Mac. Okay, and a special shout out to him for being like me, firepower. We'll be right back.

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You're listening to Disability Matters. Now please welcome back the host of Disability Matters. Here's Joyce Bender.

Hey everyone, welcome back as we are celebrating National Epilepsy Awareness Month. As I said earlier in the show, 1 in 26 people will have epilepsy in their lifetime. And you know what? Every time I go to a company and they say, "Oh, Joyce Bender, Bender Consulting Services, we know you help people with disabilities gain employment and we need your help to get started." And I will say, "Oh no, you already started." Yep, you have people working here right now with epilepsy, bipolar disorder, depression, MS, post-traumatic stress disorder. I could go on and on. It's just you don't know. And the reason you don't know is that people are afraid sometimes to say, "Hey, I have epilepsy." They're worried, "What is that going to do to me? What will that do to my opportunity to gain a job?" So hear me now. Don't be ashamed. And companies, you are missing out. And guess what? Some of your very best performers are people living with epilepsy. It's just you don't know. And Kerry, when you were talking before we went to break about your son's first seizure, which I know is very scary, was that like a tonic-clonic seizure or no? It's just this unusual seizure you were talking about?

Yeah, I think it was, if I remember correctly, I think it was, but he doesn't— that it was a one-time situation with that. It had just essentially built up over a period of time. We weren't able to recognize it because he was having the seizures coming out of sleep. And so the fact that he would have, he would probably have a seizure, we weren't sleeping with him. You know, we didn't know he was at the time, you know, 9 years old. So we just had not observed anything. And I think he had been having seizures and it had been, as the doctors tell us, building up a little bit like the fireworks and led to the larger seizure.

Well, yeah, because he could have been having, uh, absence or any type of seizure, and then it generalized to that day. But now since he's taking medication, is he pretty much controlled?

He's not, actually. We're going back in, um, over Thanksgiving, and what'll happen with him— I should say he is in the fact that he doesn't have significant problems and things have been good. But we do have to— we have to keep a camera in his room so we can see if he has a seizure when he wakes up. And then if he starts having them regularly, we do start sleeping with him again so that someone can monitor that closer. And he has started to have them, I would say, you know, once or twice a month, even though he's on the medicine. And so we're going back. He's not hit puberty yet. And I think this is going to be part of it. As he grows quickly, he's in that middle school phase, and our doctors did tell us that was going to be a factor. But that's part of what's hard for me and what's scary is that it's not, it's not fully managed.

And that is what many parents go through. Sadly, it's much, much— can be much, much worse, right? Where, uh, but This is why you need education. This is why you need to hear this show, know what we're talking about, because with the right medication, he'll be okay, right? But it's getting that leveled out. And as you said, the change, this puberty, this time of his life, uh, but he's lucky he has you, Carrie. Thank you. Lucky he has you. So I guess you answered the question I was going to ask you, how does it feel living with a child with epilepsy? But I think you're probably at times nervous.

Yeah. I mean, initially it had a big impact on us in all elements. Socially, we felt like he should get to bed 9 o'clock at night. We had to end whatever we're doing. He can't do. Um, and I know Joyce, I've learned from you on some of this of he should do and we can let him and all those kinds of things, but we weren't wanting him to do sleepovers. It's a high phase for sleepovers. We thought sleep's the one thing we can control with him, so this we have to own. And that had a big impact on, um, how our lives went and whether he was able to go on vacations or flights that were late and stay up for soccer games and things like that. He's a really, really really busy kid, and we— it slowed us down for a second, and we tried to get him what he needed in terms of help while not having as much of an impact. But it sure did. And it, it also makes him feel different. He has a brother, and he doesn't like the restrictions. And some of it, we've had to say, this is who you are, and we love you, and you're very special in so many ways, but you do have to pay attention to your own needs. And this is part of that.

Well, when I was saying about firepower, what I would tell him is when you have epilepsy, you have too many neurons firing off. Right. Which fits me. Firepower. So he has firepower also. Yeah. And that's hard because of the feeling different. But I'm going to tell you something. Teaching your child to be independent with a disability is so important because of their future. You know what I mean?

Because of when they get a job. Yeah, I think you're right. That's what we're learning. He has to be in more command of, as I was mentioning with the medicine the other day where we skipped it or someone gives double, we're like, Mac, you have to know what's going on and manage this a little bit yourself. Because this is your, this is your life, this is your go forward. So I hear you on that for sure.

So what is Mac like? Does he like sports? What does he do? What's he like?

Oh yeah, he's, he's a firepower kid, all right. He's always been that way. The minute he jumped out of bed when he was a child, you would hear just running all the time. He's just a runner. Everything is fast. He runs. From the kitchen to the living room, from his bedroom back to the kitchen. He was always our feet on the floor, fast kid. He's really talented at sports and really into sports. He plays soccer at a high-level cup team right now where he travels. We're going to Florida for a game in a couple weeks. Um, he's a really interesting, um, kid in that respect. He plays He plays high-level tennis. He's won tournaments for his age, and he loves it. He is a really big competitor. He doesn't like to just mess around with things. He jumps in. He likes to be number one and master what he's doing. But he's, he's a kind-hearted kid. He's an observant person. When we're traveling, he, he notices things. He notices people. He notices how they're dressed and how they're walking and carrying themselves and what their situations are. And I think part of that is what's so special about him because of what he goes through. He is able to be aware of people and actually some children who have also epilepsy have confided in him about that because he's been able to be open about his journey.

Well, you know, I'll never forget when Alan Faneca, who, as we all know, played as a tight end in the NFL for the Pittsburgh Steelers, sent an email to Peggy Beam, the CEO of the Epilepsy Association of Western and Central PA, and said he wanted to meet. Like, they thought it was a joke.

What a great guy.

Yeah, they thought it was a joke. What's he— you know, but he did want to meet, and the rest is history. He just got so involved with the kids and helping them. And I loved when he talked about, yeah, I have epilepsy, I take Tegretol, but you know, big deal.

Yeah, that's the kind of stuff that goes, that really, really goes a long way with these kids.

Yeah, I always tell them, no one said, okay, you guys don't hit him that hard, he has epilepsy, right? All gloves off. You know what I mean? Now, now the backup quarterback for the Pittsburgh Steelers, Justin Fields, also lives with epilepsy. And there are many people that have been incredibly successful that live with epilepsy, like the Chief Justice. I wish he would talk about it more because how more powerful could you be? Yeah, and the Chief Justice of the Supreme Court. And if you would talk about that, that would be so wonderful for, you know, for young people saying, I know it's so good.

I can be role models.

Yeah. Yes, yes, it is. Um, well, I can tell that Mac is definitely competitive, Mr. Athletic. I can't say that I was that way because I wasn't. An athlete, but I've seen so many people, so many with epilepsy competing at the highest levels and nothing stops them. Well, that's great.

Apparently. That he'll become an example of that and he'll be able to tell his story of that to younger kids as he becomes older. I mean, we get a team, he's a big participant in the race. That we have in June every year. That's so much fun, and it's a great way to combine athletics and giving and community. So the epilepsy walk/run is amazing.

So tell Mac that I'm going to call him up on stage with me this year.

Oh, okay.

Yeah. So there you go.

Okay.

It's called the Epilepsy Club. And with that, we have to go to break on the half hour with our great newscaster, uh, Perry Jude Radesik, who is always prepared. Perry, welcome.

Joyce, thanks, and thanks for having me. So today, uh, it's been about 2 weeks now since the 2024 election, and it happens every 4 years. We get a shift in the political landscape in the United States, so it's about this time that the disability community has to be looking at the potential policy directions and legislative priorities and trying to figure out where, how best can we as people with disabilities influence the direction of policy so that we either keep what we have or be able to expand the the legislative framework or the regulatory framework for people with disabilities. And it just happens, it happened again. And so there've been some concerns, there's always concerns no matter who's in power when it comes to disability-related issues. And so the concerns right now are focused on maybe reducing government regulations, maybe reducing government spending, How would that impact people with disabilities? Well, that could translate into specific regulatory actions affecting healthcare or mental healthcare or home and community-based services, education, and employment. These are the things we're keeping a watch on. The last time this happened, the disability community faced these issues, right? Block granting Medicaid. Medicaid. That's an issue because when they block grant Medicaid, if the state runs out of Medicaid funds 9 months into the 12-month fiscal year, there's no more money coming. That's it. So that's a big impact, and that could impact home and community-based services too, right? Because that's a federal-state match there for home and community-based services. People are concerned with Medicaid work requirements. Uh, not every person that you look at could work, or many people with disabilities want to work, but there's discrimination out there. So you can put in a Medicaid work requirement, but if people won't hire us, then I'm not sure, you know, this is where we have to influence policy and educate people who are making these policy decisions. We're also concerned about any rollbacks with the Americans with Disabilities Act. So we gotta keep watch over that. So, you know, I'm not gonna sit here and go through a list of things that I've heard this potential appointees to these federal offices say they're gonna do because you don't know it's gonna happen, right? Sometimes these are just talking points within a party that would, you know, get more money for a party or influence future direction for a party. So I'm not gonna go into that, but here's what I think the best advice is. I think the best advice is for us to remain calm, be careful about what we're watching and hearing because we don't know how this is going to work out. But if people want to do something right now, like they just are worried that they need to do something now, the best advice I have is contact your member of Congress, right? They're the ones who are going to be voting on who's going to be running the federal agencies, what legislation does and doesn't get through the U.S. House and Senate for people with disabilities. So share your expectations, share your lived experience, share what you think the priority should be for people with disabilities in this upcoming Congress and this upcoming administration. So how can you find out who your member of Congress is? It's so easy. Here you go. House.gov, that's H-O-S-E dot gov, is where you can find your members in the U.S. House of Representatives. It's even easier. Senate.gov, uh, is where you find your two U.S. senators. And I would just say, Joyce, always remember, your advocacy matters.

How true is that? You know what, uh, Perry, Jim Wallace, a civil rights leader, head of the Sojourners, uh, wrote a book, Christ in Crisis. He, he writes civil rights years ago. Do you know he talked in his book about that when people with disabilities— I think Medicaid was, uh, possibly going to be eliminated, and if not, cut back. He talked about how the disability community actually changed that. Could you tell that story?

Oh yeah, it honestly wasn't that long ago, right? It was not that long ago where folks had proposed eliminating Medicaid, cutting Medicaid back, and so, you know, ADAPT, which is every movement, every movement, civil rights for people of color, LGBTQ, and even disability has that direct action component in the movement. It's needed. I mean, if you think about it, direct action is needed. So direct action advocates went down to Washington, DC and protested, and there were very moving, photos and video clips of people being dragged out of their wheelchairs as they were trying to protect their healthcare, trying to protect their home and community-based services, the very thing that allows them to get out of bed or go to work or do what they do, to have equal, you know, to be on an equal playing field with the rest of us. And, and so that was really moving, Joyce, and it worked. You know, will it work again? I don't know if those same kinds of cuts are proposed, but I'm sure people are thinking about the next steps. And again, if people are concerned, best thing to do right now: stay calm. Let's see how things play out, but send your priority list to your member of Congress. That's what they're there for, right? You just voted them in. Let's express what our priorities are and what our lived experiences and how the two come together.

Thank you so much, Perry. If I can say, don't wait. If there's something on your mind, don't wait. This country, we have the right to vote for who we want. I'll never forget when President Obama said, "You know what? You can call me any name." And you know what? That's good. Because if you were in other countries, you couldn't even dispute something, or you would probably be in prison or killed. Just like right now, what happened in Amsterdam, where— oh my God, when I saw those pictures of people in Amsterdam fighting with Jewish people this anti-Semitic outbreak and saw the fire and all this, I thought, oh my God, that looks like Hitler in World War II. So we all have to stick together. That's what I would say. We all have to stick together. And Carrie, I'm sure you agree with that.

Yes, sticking together is a good idea.

Yeah. So Carrie, what advice do you have for a parent because I did have people call me. What advice do you have for a parent listening to the show right now who is just so nervous about their child with epilepsy? That they're so nervous, and I know so many people like this, that they almost don't want their child to do anything on their own. So what advice do you have for them?

My advice about that is, is you can't get really caught up in solving it. As I mentioned before, it's not something that's going to be solved, ended necessarily. It's something that's going to be part of things now and that you're going to have to deal with on more of a day-to-day basis. I really think the day-to-day approach is important. It's important not to forecast out too far. What will happen? What will life be for Mac in 10 years? What will we do then? It's, it's, you know, you can do that with any, any problem or potential obstacle in life. So I think you have to remind yourself that you're not going to solve it. The best thing you can do is equip yourself with community. I think knowledge is great, and I think it's important to learn as much as you can about what's happening with your child, with your family. But I think the community element is just as important. You need to get out there and see who has groups that you can join, like our Epilepsy Foundation. I mean, I think those are really what's happening in terms of service related to this. These are ways that you can be part of something and feel better about it without solving it, because you're not going to solve it. It's a, it's a complicated thing and it's not something that doctors are going to have an easy fix for necessarily. You know, some kinds, yes, some kinds, no. And as we've talked about, there are many different varieties and variations on this. Everyone has a very different story. But I don't think you should look for a sense of this is solved. It's more of like we're handling it this way today and then tomorrow we're going to do this. Day to day. And for us, that gives me some breathing room. I can't— it's too overwhelming to think about it too far into the future or the past.

Yeah, I agree with you. And you know, this is so terrible, but there are some parents that are ashamed that their child has epilepsy. And what they'll say is, Shh, don't tell anyone.

Mm-hmm.

Do you think about that, Keri?

Yeah, I think that's really a shame. I think part of building a child's confidence and ability to be resilient for the problems they face is truth. First of all, knowing their truth, knowing who they are, knowing what they're facing. And like you said, we all carry so much, whether it's something that's distinct, diagnosed, undiagnosed, there's so much weight carried by every individual that you face every day that there's nothing to be ashamed about to have something that's defined, that needs a treatment path, that has, you know, something that you have to pay attention to medically. That is— that's also a weight. But it's nothing— it's not different than a lot of other weights that everyone carries in their lives.

Yeah. And when you say to your child, don't tell anyone, you're saying it's terrible. Yeah, it's bad. You have something to be ashamed of. I mean, why would you ever want to do that? Why would you ever want to do that?

Yeah. And we thought that initially with, like you said before, with, as I mentioned, Mac is in high-level sports. And when we told his coaches, what would they think? Would they put him in a different position? Would they play him for less time in the game? Concerned about things and none of that. I think what we're telling him is to be proud that this is part of you and you're still able to say, I keep going. I, I— it doesn't stop me from doing what I'm doing at all. And I know that's not the case for everybody, but in his case, that's, that's our theme song.

And He is the role model for a lot of those kids. And if you have a child listening or a teenager is listening, you're hearing it, you're hearing about all these sports he plays, and it sounds like he's really good at the sports he plays. Nothing has to stop you. I always tell people, take your medicine, right? Get rest. You know, don't pull an all-nighter, right? And don't drink, don't drink a lot, right? Everyone I know, they have a beer or a glass of wine. But do you know when you drink too much, it also diminishes the power of that medication? So these are all things that, you know, are— but other than that, I mean, I don't care if you want to go bungee jumping. I mean, you know, it's all up to you what you want to do. I was so happy when my doctor said Well, you know, I don't know if you should, you know, go on like rides that are, you know, like really high, like a Ferris wheel. It's up to you. I was so happy because I'm afraid of all of that. And now I would go. Yeah, it doesn't matter how high that is. But you know, I have epilepsy, so I won't be going. And I do want to add one other thing. Make sure you have the right doctor. That's true. So if you're listening right now, don't go to the family doctor, go to a neurologist. And when you go to a neurologist, initially start with an epileptologist.

That was something that we didn't know about until you just have to advocate and find your way through because sometimes you're presented with a neurologist and an epileptologist was a different category. And I thought, well, how do we get one of those? You know, so you just have to advocate for yourself.

And along the process, I tell that to everyone. If you go, go to a neurologist, but it has to be a neurologist that specializes in epilepsy, which is, as Carrie just said, an epileptologist. Think of me. I went to a family doctor and he told me it was fine. I just— some female hormonal problem. And it's only by the grace of God I'm sitting here right now, because I went to the movie theater, I had a seizure, I hit the floor so hard I fractured my skull, had a brain hemorrhage, life-saving brain surgery, and this miraculous recovery. Um, but I could have died. And think about this, I was driving a car. Yeah. Yeah. That was a family doctor. So listen to me, epileptologist, you know, I cannot stress that enough. Don't go get— because you know what? They don't know that much about epilepsy. I'm talking about the family. They really don't. And you have to go to someone who does because then that person has to decide the medication that you're taking. So, Carrie, You're a wonderful person. Wonderful people usually have a role model. So, um, how about you? Who is your role model?

So I'm a big family person. For me, it's my mom, my sisters. I have 3 strong, fantastic women in my family who have all really— they just shine at what they do and who they are every day, and they've taught me to be driven. And they've taught me to go after what I want, and they've taught me to really be strong in my beliefs and solid in who I am. My dad as well was a huge influence on me. He taught me to love your people hard, and, and that's really the best thing you can do. They're happy as you're happy. He died a few years ago. We miss him terribly, but But for me, the role model is, is my core, my family, my people, my husband and my kids are, are the most important things to me. They are my whole world.

Oh, you can't get past family. That is so true. So mother and sisters, what are their first names?

My mom is Beverly and my sisters are Shelley and Shannon.

So there you go, you heard your name. I did. Just think about this, your names have been heard in China, in Germany, all over. Yes, all over.

So global.

Yes, they are global. Uh, oh, oh, what's your husband's first name?

My husband's name is Jeff Marr.

Okay, I left him out, sorry about that.

No, that's okay.

And we know Mac, so we know Mac.

And then I have Will, he's 16, and so Those are, those are my lights. My love lights are Jeff and Will and Mac. And then I get the support and inspiration from the women who surround me too.

Yeah, that's great. So, Carrie, over the past year, I can already tell from reading your bio you've done so much. But what would you say has been your proudest accomplishment?

Well, it's funny to me, it's really the small things that add up. So one of my proudest accomplishments is the 16-year-old who I was just talking about. He's in 10th grade and he's starting to really open up to me about the things that affect high schoolers, the big things of going to these parties for the first time, of having a girlfriend, going through some different difficulties socially. And I can't believe that he's talking to me about it. This is a kid who has not been extremely open with me. And so to be honest, having him open and talking is one of the proudest things I, I feel right now. Just, just that's a big point of pride for me. So it's a, it's a small one, but that's a big one for me. And then in the work category, Gray Matter was just reinvested with a private equity firm. They bought a lot of us to start funding us in a big new way, and we're growing and scaling fast. We're buying companies all over the country, and it's just super exciting. And, and my accomplishment with that is really feeling like our brand voice is heard, and it's, and it's helped. And that's something that our marketing team is really proud of, um, and really proud for what we're able to contribute to the success of the company.

That is great. Gray Matter— what is the website? Graymattersystems.com. graymattersystems.com. So anyone listening to the show, if you want to know more about Gray Matter, uh, that's where to go. As I said, when I heard the name, I thought brain, but it is data is, and connectivity is connected.

The brain of the operations.

That's right. Uh, so Carrie, what message do you have for our listeners today?

So I think we've talked a lot about a lot of things. And again, I'm one that, as I said, thinks the small things build up. I'm someone who really believes strongly in a quote from Gini Rometty. It's that growth and comfort do not coexist. You have to be a little uncomfortable to grow, to grow as a person, to grow as an advocate for a disability or for epilepsy or something that your family is going through, it takes growth to move in a different direction. Um, personal growth, exercise, trying to be someone new, just all of it. I'm for growth, and I think you have to realize that you're going to be uncomfortable. It's not a bad idea. Talk to your friends, build community. The small things do add up, and I think that that sense of community will provide you with the shelter when you're going through the uncomfort of growing.

You know, when you said that quote, it reminded me of the quote from Alan Faneca, who said, "Success is on the other side of hard." Yes. Yes. Success is on the other side of hard. And that's what that reminded me of when you used that quote. Well, thank you, Carrie. Thank you so much for being with us today.

Thank you. I really appreciate it. Carrie, I love being with you guys. This was an honor and a real treat for me, so thank you.

Oh, thank you. And Perry, greatest newscaster, thank you for keeping us always up to date. And you know what, Carrie, we are the only place— we don't have CNN, the disability community, we don't have MSNBC. We are the only place that you can go to every week and find out what's going on in the news in the disability community. For how many years, Perry? 5, 6, very short years. For 6 years. Uh, so people with disabilities, if they're wondering what's going on, what's happening about a topic or a subject, every week, every week Perry gives a news update.

So Absolutely, you guys. That's important work.

Very important. Yes. And one thing I want to say, listeners, remember, I love you. Thank you for being so supportive. 21 years I've been on the air. 21 years. And you make that possible, as do all of you around the world. And with that, we have to end the show with a quote. And today it is. I have learned that success is to be measured not so much by the position that one has reached in life as by obstacles which he has overcome. Seems like we're on the same brainwave, Carrie.

I think so.

Who said that? Booker T. Washington. And in the words of Mary Brooker, when you go out today, Remember, choose joy. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America variety channel. We are the leader in live internet talk radio. VoiceAmerica.com.