Episode 102: Angels of Epilepsy Founder Natalie Y. Beavers

Episode 102: Angels of Epilepsy Founder Natalie Y. Beavers

Overview

Natalie Y. Beavers is an award-winning epilepsy survivor, advocate, and founder of the Angels Of Epilepsy Foundation, a non-profit organization that brings awareness, education, and community to epilepsy survivors and their families nationwide. Diagnosed with epilepsy at the age of 5, a seizure while she was driving in 2006 caused a life-changing and tragic car accident. Subsequently, doctors informed her that there was damaged tissue on her left temporal lobe and a cyst on her brain. While two craniotomies have decreased her seizure activity, the cyst remains — so she still experiences seizures from time to time. Her many hospitalizations introduced Natalie to fellow epilepsy survivors and their families, and in 2008 she launched Angels of Epilepsy as a response to the community — to provide deeper support networks and fulfill needs from transportation to medical IDs, among others. Because of her disorder, Natalie continues to experience short-term memory loss — a common side-effect of epilepsy. In a doctor’s appointment in 2013, she couldn’t recall details of recent seizures…so she decided to create and publish The Seizure Diary, which aids those experiencing seizures in tracking their episodes and being able to report back to medical professionals with greater detail and accuracy. Most recently, she has also co-authored Hacking Healthcare with Lauren. What started as a guide to the US healthcare system for the Black community has now become a project with much wider range and significance; an ever-evolving document to provide support and resources to anyone relying on healthcare and finding themselves all at sea.

Takeaway

Transcript

AoE Angels of Epilepsy Uninvisible Pod WEGO Health

Lauren: All right, guys, thank you so much for joining us. I am here today with Natalie Y. Beavers. Natalie is the founder of Angels of Epilepsy, which is an organization that raises awareness of seizure disorders. She herself lives with epilepsy. And she's got quite a story to tell. So Natalie, thank you so much for joining us today.

Natalie: Hi, thank you so much.

Lauren: It’s such a pleasure chatting with you. Some of the people who are tuning into the show today may know that we've also been partnering on a resource project for the Spoonie community. So it's really awesome to be able to not only work with you and partner with you, but collaborate with you in this way in the interview today.

Natalie: Yes, yes. Thank you so, so much. It's great to be part of you guys.

Lauren: Oh, gosh, of course. So happy to have you. So let's start at the very beginning, as we always do. I would love it if you could tell us when and how you first realized you had something going on with your health, and what you've done to take control of your health since.

Natalie: I've been dealing with epilepsy for almost 40 years now. Going through dealing with epilepsy … and even those who just basically live with not only just epilepsy, but other neurological conditions … the only thing I could really, really say is, we still have to learn so much about what is it that we could do. It doesn't matter whether we're talking about HIV or AIDS, or any other type of disease or medical condition. It's about what can we do to know how to come together and learn the best that you can to get used to enjoying each other. Point blank. It’s hard.

Lauren: Yeah. So it sounds like you were diagnosed when you were really young. You were about three years old?

Natalie: I was actually five years old. I had a very high temperature. And my mother told my dad, she needs to go to the hospital. And I went to the doctor, and they stated that ‘she has a very, very extreme temperature.’ I started to have the seizures. That really scared my parents and my family. They started different medications, as well as different tests.

On the left side of my brain, they saw a scar that was the size of a dime. 

Lauren: Oh, wow. 

Natalie: Yeah. And that's when they diagnosed epilepsy. They gave me the different medication, from five years old, all the way up. I experienced dealing with so many different types of seizures. There are so many different types of seizures. it was crazy.

Lauren: It's interesting that you also say that the doctors noticed a scar on the left side of your head. So does that mean that maybe you had bumped your head or something when you were little, and that may have caused the seizure disorder?

Natalie: I could have had epilepsy as a little child, but it didn't come out as badly. From the age of five years old, that's when I was actually diagnosed. 

Lauren: So you might have been having smaller seizures that maybe no one noticed, up until that point, and we're not entirely sure what the cause is. But you've been having all different kinds of seizures, ranging in severity, length, origin ever since then?

Natalie: That’s correct.

Lauren: So you mentioned to me before we hit ‘record’ that you have had surgeries in the past. You mentioned that you've taken medications as part of your treatment. What does the treatment regimen look like for you? Are you still getting seizures now? And have you had more than one surgery? What's that all played out as?

Natalie: Yes, I still take medication. But at one point, I did stop taking medication. That was before I went to high school. Right after my middle school up until high school, I had no seizures at all. They said, “Okay, Natalie, you don't have to take any more medication. We're going to take you off of the medication because you have grown out of your seizures.”

But after my freshman year in high school, my seizures came back.

It varies when it comes to epilepsy. It was quite hard, to be honest with you. And it varies for many people. There are some people that I know who have had 25 years free, and then they go back into having epilepsy. So again, it could vary.

Lauren: It sounds like we don't know enough about epilepsy itself. We're going to get into this, but it sounds like research is lacking. Because we're not understanding enough about what's going on, what's causing the seizures, why they continue to happen, why they might pause for periods of time. So what led to you having this surgery, as well? So you get the seizures back in your sophomore year of high school, and you had to go back on medication and stuff from that point?

Natalie: Yeah, I went on medication, but also I was afraid a lot. I also did my own research as I became older. And my doctor at the time … they did an exam and said, “You stated that when you were five years old you had a scar on the left side of your brain. Now you’re 28 years old, and that scar is not the size of a dime. It is now spreading across your temporal lobe.” I was shocked; I’m, like, “Are you serious?” They said, “Yes, your damaged tissue is completely on your left temporal lobe. And do you know you have a cyst on the back of your brain?”

Lauren: So this is something that's been growing this whole time and no one's been checking?

Natalie: I did not know, and that's when the doctor at the time advised me to go see a specialist at this university. They said, “We would like to do surgery where we will put the information on your brain first, where the implants will be on top of the brain.”

Lauren: Oh, I see. So they were going to put implants in to stop the seizures.

Natalie: Correct. And then after that, months later, that's when they would go in and remove the damaged tissue on the brain. They did do that, but they did not remove the cyst.

Because they said that if they went near it, I could be paralyzed.

Lauren: Oh, wow. And do we know if the cyst is progressive at all? Is this something you still have?

Natalie: I still have the cyst. They said that, thank God, it will not grow, but they still have to just make sure that it's okay. But they said they know that it will not grow or anything like that. 

Lauren: And become worse. So now you've had the one, or the two surgeries, the one where you've had the implants put into the surface of the temporal lobe. And then where you've had this damaged tissue that had expanded, this scar tissue removed, right? So you've had those surgeries. Has that helped reduce the occurrence of your seizures, because of that? And have you had to also supplement with medication?

Natalie: Yes. Since I've had the brain surgery, it has decreased my seizures, it really has. I honestly think that’s due to the cyst that's on my brain … I believe that's the reason, about 20%, why I still have my seizures. The brain surgery, it helped a lot, period. It helped a lot. It did.

Lauren: So did you find that along this journey … I know you were diagnosed as a kid … were your parents showing up as your personal advocates when you were a child going through this? Or have you learned to become your own advocate, as a patient, throughout this experience?

Natalie: My parents did not become advocates till I became older, in my freshman year in college. When I decided to say, “Hey, I really need to see a specialist.” That's when my father said, “I'm going to be right with you so we can all see.” And once they spent all that time with me, at the hospital and even after the brain surgery, they learned so much. And that's when I said, I'm going to advocate, I'm going to do this.

Even before my final brain surgery, I made the decision to start a charity.

My family said, “Let's do it. Let's just go for it. Because there are many people that need help.” Especially with this particular medical condition, there are medical charities out there that deal with epilepsy, but there aren't enough. That’s when I said, I have to get out there and do it somehow.

Lauren: So you really did learn to become your own advocate, but not until you were an adult. And it sounds like your parents were showing up for you at appointments, your dad was there with you. So has that deepened your relationship with them because of that?

Natalie: Absolutely. Especially my dad. My birth mom passed away in 2004. But my dad, when it comes to my seizures or anything like that, he wants to make sure everything is okay. But I really just like the fact that he’s learning about epilepsy, learning more about it, and his wife as well. And also teaching others about it. Doing the parent part, he started giving advice to the parents.

Lauren: Yeah, to other caregivers. That's beautiful. So what does a typical day look like for you, as you're balancing the demands of work and life, which are busy and not at all simple? And trying to prevent the recurrence of your seizures. Do you know certain triggers that you're able to avoid throughout the day? Do you know what to do when you have a seizure? How have you had to build your life around your condition?

Natalie: Well, I am a mother. I have two boys. I just dropped my baby boy off at college in Virginia. They know a lot when it comes to my seizures. I would say, on a day-to-day basis … because I still take my normal prescriptions … I’m also a cannabis advocate. I do have my registration for cannabis oil. So I also take that as well.

Just last week, I have been four months seizure-free. 

Lauren: That’s amazing. Wow, congratulations! 

Natalie: So I am so happy! But I also think, too, we're dealing with this COVID-19 crisis, and I'm not doing as much as I usually do. If our life was normal, as it would usually be, I would be traveling, speaking at this place, having this event here, and doing all of this. But again, with COVID-19 … we're doing a lot of work, the majority, at home. It's a lot as far as kind of just staying put. But meditation has helped me so much when it comes to my seizure activity.

Lauren: It’s interesting, because you're using holistic methods; you're using the the CBD oil, and the meditation. It’s not just about throwing medication or a surgery on the problem. It's a whole lifestyle that you have to adopt in order to prevent recurrence.

Natalie: Absolutely.

Lauren: So have you also been in situations … this is an invisible condition, right … we don't know that you have a seizure condition until you have the seizure. Or until you tell us. Have you been in situations where you've been confronted and forced to justify the fact that you had this invisible condition — to someone who didn't understand it because they couldn't see it? Be that a practitioner, friend, family or otherwise?

Natalie: Yeah, absolutely. And also, too, there are many people that have asked me, ”Should I tell someone that I have seizures ?” Because this is an invisible illness.

Years ago, I used to go out on dates, and I didn't tell them that I had epilepsy.

Lauren: Well, of course, on a first date, it’s sort of early to tell people some personal information.

Natalie: But, there were times when I could just have a seizure out of the blue. And they’d come back at me and say, “Why didn't you tell me that you had seizures, because that scared me.” That was years ago. But now, if I were to go out on a date with someone, I feel … my opinion … that you should tell people up front. And the reason I say this is because, even on that first date, I could have a seizure right there in front of you. And then what? So, some people could say, “What exactly do you do? Where do you work?” And I would immediately say, “I have a charity, Angels of Epilepsy, and I started the charity because I have epilepsy … and blah, blah, blah.”

Lauren: It’s a great segue into your own personal history, for sure.

Natalie: Absolutely. And many people that have different medical conditions or illnesses, they’re mis- judged. And I’m one of them; they're discriminated against.

Lauren: Yes. Well, and I'm curious about that, too. Because when you do tell people about a condition, it can open you up for discrimination. Is this something where … you are telling people for your safety. But it's a question of your emotional safety against discrimination, versus your physical safety if you do have the seizure. How are you weighing those things in the balance, and deciding who to tell and when to tell them? It's hard work, I bet. 

Natalie: Yeah. It's hard work. Honestly, it's very hard work. Because even some people … think about teenagers who are in school, some of them feel like, I'm not telling anyone anything. Also with my charity, there are wives that have called us to say, “I really need for you to talk to my husband because he goes to work and he has not told anyone he has epilepsy, seizures. They have no clue. But what if he falls down at work?”

And many of them say, “I will not tell, because I may lose my job.”

So my opinion, again, I really, truly feel that it's best people come out and tell whatever illness that they have, because you never, never know what exactly could happen.

Lauren: Yeah, absolutely. You mentioned this idea of discrimination. And I'm wondering if you've experienced undue prejudice in the health care system, particularly because you're a woman of color, right? Can you see maybe, that you would have had better care or been taken more seriously if you had maybe been a man, or been a white woman, being diagnosed with the same condition? Would your journey have been different?

Natalie: I think, honestly … and I've seen it for myself many years ago, how some doctors have treated certain people, dealing with discrimination. And I've also dealt with people that I know that have a boyfriend that is a different race. And they say, “Well, why is my boyfriend treated differently compared to me when I go to the doctor?” And I tell them, “That's because you are a different color compared to your boyfriend." It is the absolute truth.

Lauren: And a different gender.

Natalie: Exactly. And also, a different gender. If you think about it, people who could be gay, who could be a certain gender or anything like that, they are judged.

Many people are judged, but it shouldn't be that way. We are all human.

Lauren: Well, would you say that racial and gender inequality in the healthcare system is a public health crisis?

Natalie: I believe it’s a health crisis. I honestly believe so. And it must change immediately. It must change. That's what I really, really truly hope for.

Lauren: Yeah, absolutely. We know that you've turned into your own advocate and become an advocate for others in the creation of Angels of Epilepsy. Can you talk to us about your foundation and about the work that you do as a patient advocate?

Natalie: Yes, we help so many people. The goal when I first created it … I was actually doing the testing before my first brain surgery. I met so many people there at the hospital. And that's what gave me the idea, because all of us had similar stories. And all of us came out, and asked, “Do you know any support groups or any groups or charities that deal with epilepsy survivors?” And some people said, "Well, yeah, we know of this one. But they've kind of brushed us off.” And that gave me the idea … if I do this, I'm going to do it in a completely different way. My charity will be more a family. There are charities that say, “Our charity deals with workshops, health seminars.” And that's about it.” They can have patient information and resources. But there are other platforms, other ways that the actual survivors have family needs. And that's why I said, my charity would literally give medical ID and alert bracelets. We have an invisible illness. Let's give the medical bracelets. Because I look normal, but I can go to a grocery store and fall down and have a seizure. And some people could look at those with epilepsy, and say, “Is she drunk? Is she high? Is she on some type of PCP or something?" No, I have epilepsy. So that's one of our main goals, to provide the medical ID alert bracelet.

Lauren: Which is a first alert kind of thing. It's such a vital part of being a patient with this illness. So that's wonderful that you're providing that for people. 

Natalie: Absolutely. Another thing is, I was involved in a car accident in 2006.

I had a seizure while driving.

I hadn't had a seizure in years. My baby boy, he was about two-and-a-half years old. I was working two jobs. Every Friday, I would take my nanny at that time and my baby boy to her house before I’d go to work. And that particular day … we were in the car, singing, and I told my nanny, “I don't feel well. I believe I'm going to have a seizure or something.” And she stated that after I said that, I was seizing, but I was driving, so she had to take the wheel to save us. But unfortunately, the accident turned into tragedy. That changed my life. After that, again, I went to a mental state dealing with all of that. But it also taught me a lot about epilepsy in the brain. Because I felt there is so much that I need to learn about the brain, to learn about me. And I'm not the only person that has gone through this. So what can I do to help? And again, this was right before my brain surgeries. Going into brain surgeries, then meeting people who had been sick … some of them had the same stories as me. So, again, with the charity, we provide transportation for them. I do not want anyone to go through what I face. First of all, it's going to help save lives. And it's going to just help make a change. Because I do not want anyone to go through what I faced years ago. First of all, if you have seizures, you should not drive. I'm also, hopefully, working on a law to be passed. 

Lauren: Wow. 

Natalie: Yeah! When it comes to seizures and driving … honestly, from state to state, there are so many car accidents that happen due to having a seizure while driving. My charity, we actually do so much. Again, we have a lot of workshops and seminars to give educational information. And we also have our own advocacy, where many people say, “Hey, I would love to tell my story, but I'm not sure how to do it.” Or, “How do I go from here?” So we also have our own advocacy team as well, where we can give them some key points on how to be your own advocate.

Lauren: That’s incredible. Well, let's talk a little bit more about the way that your advocacy work also reflects what's going on in the healthcare system. I'm curious to know, from your point-of-view and your experience as an epilepsy patient, in what ways is the health care system we have here in the US working for patients, if at all — you’re allowed to say it's not. And in what ways does it require improvement, like the passing of laws to actually protect patients?

Natalie: I believe there have been some changes. Because of the world that we're living in right now, there is need for change. But I do see some people say there has been a lot of change over the past few months, due to all of this going on. Many doctors and facilities have come together to say … hey, we're really going to have to look at the Black community, the Hispanics, these minorities. What can we do to better them? We need to treat them as people, but we also need to treat them as family, to sit down and actually talk to them. So I think that there is work that has to be done in several places. And I think that we as patients should not be afraid to talk to these doctors as well. If you feel that you're not getting anywhere with one particular doctor, you should be able to go to another one — or another one or another one — until you get the proper care, the proper communication, to move forward.

Because you're paying that person to handle your health and well being; you're paying that doctor for it so they should at least respect you on that.

But if you're not getting it in return, what can you do? Move forward to the next. Call your health insurance and say, “Do you have any other referrals of who I can see?”

Lauren: And that's hard, because a lot of people don't know that they can seek a different provider within their health care plan, or even ask about a doctor's cash rate so that they can try to afford care if they're struggling to do that. So I'm glad you bring that up. Because it is so important that people understand that they have choice. In a system that makes us feel like we're strapped for choice, we have to exercise that right.

Natalie: Right, absolutely.

Lauren: I also like to get some Top Three lists from the people who are on my show, and I was wondering what your Top Three Tips would be for someone who suspects they've got something off? Maybe they've already been diagnosed with epilepsy, or another invisible condition. What are your Top Three chronic illness tips for living life fully and vibrantly?

Natalie: I would say Top Three Tips … definitely, maintaining a healthy life. There’s no cure for my medical condition. There's no cure for epilepsy, right. But there are things that could help control it. In my last blog for Angels of Epilepsy, I think it’s the main newsletter …

Lauren: I'll have you send it to me, and we can link it on the web page for the episode.

Natalie: Absolutely. I talk about how it's surprising to me that I'm three months seizure-free. But I realize, again, is it because of the COVID-19 and I'm not as busy dealing with the traveling and going to all of these events, and doing all of this and doing all of that? But I also realize, too, that I'm eating healthier, number one. 

Lauren: We’re not eating out as much, so we’re more in control of our diets.

Natalie: Exactly. We’re not eating out as much, because if you think about it, if we were out working, what are we doing … we're eating out more.

Lauren: And eating on the go, which is not always healthy.

Natalie: Exactly. And also just taking time to exercise. Even if you don't do too much exercise, if you just take a walk a few times around the block …

Lauren: Which we need to do, because we're stuck in the house all day. We need to go on those walks!

Natalie: Exactly. Get out of the house. Why not just take a walk around the block? Get some fresh air. And also, again, meditation. I learned about meditation I would say, in 2014, I believe.

Lauren: You’ve been doing it for a few years.

Natalie: About 2014. I heard from it was a hip hop legend, a female, I saw her on TV, and she talked about it, the rapper, MC Lyte. She said, “I started doing meditation. I just sit outside in my backyard on a rock. I let the wind blow on my face. I just sit with my legs crossed. And I think of positive thoughts.” Another one is Russell Simmons.

Lauren: Yes, he's a huge proponent of meditation.

Natalie: Yes, he’s another one.

I Googled ‘meditation’ and I just started reading about it.

Google helped me a lot. And I do it quite a bit.

Lauren: So, meditation, exercise and healthy eating.

Natalie: Yes, absolutely.

Lauren: And I guess that also goes along with trying to find ways to slow down a little bit, if we can, right? COVID has forced a lot of us to slow down. And maybe that's actually good for us!

Natalie: Yes. And that's what a lot of people said, too. I know a lot of people are complaining, that they’re ready to get back out because of the COVID-19. But sometimes, this COVID-19 situation could be telling us that we need to relax. We may need to step back and think about some things that are very, very important. Like our health.

Lauren: Yes, absolutely. We can refocus. I know meditation’s probably on this list, but what are the Top Three things in your life that give you unbridled joy? This is my favorite question to ask because it really gives us an insight into what makes you tick. Things that you're unwilling to compromise on, right. So these can be guilty pleasures, secret indulgences, comfort activities maybe after you've had a seizure. But what are the Top Three things in your life that give you the most joy that you turn to when you need a boost?

Natalie: Hmm, something that I turn to when I need a boost …

Lauren: Something that gives you joy.

Natalie: My children, and I really miss my baby right now. I just dropped him off at college. He’s an athlete. He's a football player.

Lauren: So now you're like dealing with an empty nest for the first time? 

Natalie: Yeah, my oldest son, he's around, but he's an adult; he's doing his own thing. I love my babies so much. They will always be my babies. I know they have to grow up. But they are my joy. That's probably my main thing.

Lauren: The number one thing. I know your work also gives you joy, your advocacy gives you joy.

Natalie: What I am going to do, hopefully one day … I love to cook. And hopefully, if I can get funding … one day, I will go to culinary arts school.

Lauren: Oh, wow! That would be amazing.

Natalie: I love to cook. I don't want to go and be a chef in a restaurant or anything like that. But I would love to have that under my belt.

Lauren: Yeah, absolutely. It's another feather in the cap. 

Natalie: Exactly!

Lauren: What is your ask for listeners who are tuning in today? What can people who are hearing about your experience and learning about Angels of Epilepsy do to support you and your community in your ongoing work?

Natalie: I would say, just keep going. Keep having a positive outlook on your life. And also, too … I tell a lot of people, because I'm an advocate for mental illness, I'm an advocate for epilepsy and people with a disability.

I tell people to write down exactly what you want.

I got this from Steve Harvey's book called Jump.

Lauren: Ah, okay.

Natalie: If you want to do something in life, you really can do it. Even though you may have a disability, you can put an action into something; you really can do it. It’s all about your mindset. You can push for something. But it’s about staying motivated, to keep pursuing. It may not happen when you want it to. But it’s up to you to keep pushing for it.  So just continue to have that momentum, the courage, and that empowerment to just keep going. Don’t stop.

Lauren: I love that. And obviously to follow Angels of Epilepsy across social. Tell everyone where they can find you.

Natalie: Oh, yes, we're on all platforms. We're on Facebook, Angels of Epilepsy Foundation. On Twitter @AOEpilepsy. On Instagram, angels_of_epilepsy. And we're on Linked In, Angels of Epilepsy. And also on Pinterest as Angels of Epilepsy Foundation, because we also love to talk about cooking as well. So we're pretty much everywhere, and we communicate with everyone. When they contact our charity, they can leave messages, and we'll get back to them. 

Lauren: That’s awesome. And what's next in your advocacy journey? I know in your wellness journey, it sounds like culinary school’s on the table. But in terms of your advocacy work for Angels of Epilepsy, as you continue to grow and to expand, what is the next step?

Natalie: Our goal, because there are so many people reaching out to our charity and advocacy … we want to expand and have our charity grow into other states. We want to start in the southern states first, because in the epilepsy community, there aren't many organizations that are in the southern states. And go on and move forward in other states as well.

Lauren: You’re Georgia-based right now?

Natalie: Yes, we are. We can travel and have seminars and events throughout, in different states. But many people are asking for Angels of Epilepsy in their state.

Lauren: Time for chapters.

Natalie: Exactly. I’m working on it.

Lauren: That’s amazing. Well, Natalie, is there anything else that you would like to share before I release you into the ether today?

Natalie: No, I don't think so. I just really want everyone who is dealing with any type of illness to stay calm. And know that you're not battling this fight alone. Because so many other people battling certain illnesses feel like they are alone. But really, they're not. It's always good to connect with different organizations, charities, and different divisions in all these other states — and social media — to connect with different people, and start that family.

Start that group. And just go from there — because you are not alone.

Lauren: That’s so beautifully said. Natalie, thank you so much for being on the show today. And I look forward to continuing to collaborate with you and watch Angels of Epilepsy continue to grow.

Natalie: Yes, no problem. Thank you so much, Lauren!

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