David Clifford of Brain Ablaze On Life With Epilepsy and Being Creative With Your Path

On today’s episode of Creative Space, we have the  pleasure of chatting with David Clifford, a software engineer and entrepreneur who spent 20 years in Silicon Valley, working for companies like Apple, Twitter, eBay, and PayPal. He’s also an epilepsy warrior and founder of the popular website and podcast, Brain Ablaze, which is dedicated to providing support for people living with epilepsy and their caregivers.

The episode goes into great detail about David's journey with epilepsy, beginning with his diagnosis and culminating with a potentially life-threatening status epilepticus event in 2017. Throughout his journey, he navigated the complexities of the health care system, the ongoing search for the right treatment, and the emotional toll of living with epilepsy. But instead of letting his diagnosis hinder him, he utilized it to fuel his passion for creativity and advocacy.

David's commitment to the epilepsy community led to the creation of Brain Ablaze, his platform dedicated to supporting individuals with epilepsy and their caregivers. He shares his experiences, offers advice, and provides a space for others to share their stories. This platform is more than just a beacon for those living with epilepsy; it is a testament to the resilience of the human spirit in the face of health challenges.

The podcast episode also delves into the diversity within the epilepsy community and the stigma that continues to surround it. David discusses the psychological impact of living with epilepsy, which can often be as challenging to manage as the seizures themselves. He emphasizes the importance of being your own advocate in the healthcare system and highlights the value of connecting with others who have gone through similar experiences.

For more on David Clifford and Brain Ablaze, visit: brainablaze.com .

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Disclaimer: The information in this interview is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available is for general information purposes only. You are encouraged to confirm any information obtained from this interview on your own with other sources, and review all information regarding any medical condition or treatment with your physician. Never disregard professional medical advice or delay seeking medical treatment because of something you have heard throughout this interview.

Transcript

Jennifer Logue: 0:10

Hello everyone and welcome to another episode of Creative Space, a podcast where we explore, learn and grow in creativity together. I'm your host, jennifer Loge, and today we have the pleasure of chatting with David Clifford, a software engineer and entrepreneur who spent 20 years in Silicon Valley working for companies like Apple, twitter, ebay and PayPal. He's also an epilepsy warrior and founder of the popular website and podcast Brain Ablaze, which is dedicated to providing support for people living with epilepsy and their caretakers. Welcome to Creative Space, david.

David Clifford: 0:52

Thank you so much. I'm so glad to be here. I've been listening to your podcast and I really find it really interesting.

Jennifer Logue: 1:00

Oh, thank you. I appreciate you listening and admiration is mutual, because I love Brain Ablaze. I love the community you've built. So many questions that I've had about epilepsy since getting diagnosed. I feel like I just have to go to your website, your podcast or the wonderful community you have on Twitter and the answer is there, and it's a wonderful thing. It makes you feel like you're not alone, which is amazing.

David Clifford: 1:30

Never alone, never alone. Yeah, there's 65 million of us. You're never alone, yeah.

Jennifer Logue: 1:37

Our brains are on fire.

David Clifford: 1:40

That's right.

Jennifer Logue: 1:41

So we'll talk about the name of Brain Ablaze too, a little later in the episode. So where are you calling from today?

David Clifford: 1:49

I'm calling from the heart of the Silicon Valley, san Jose and the Willow Glen neighborhood. If you know that area, that's my home base now.

Jennifer Logue: 2:02

So cool and did you say you're retired now from tech?

David Clifford: 2:07

I am. I'm retired, I got to work on some really great projects on some really things that is, inside of your computer and your phone and your car and everywhere, and now I am doing Brain Ablaze full time and making sure that I can support other people like me going through what they're going through.

Jennifer Logue: 2:33

Wonderful. So on Creative Space, as you've heard from listening, I like to go way back to the beginning. But where did you grow up and where did you find inspiration as a kid?

David Clifford: 2:47

So I grew up in this. At the time it was a little town in rural San Diego called Escondido, and now it's grown dramatically. It's a great place to be from and I grew up on the bottom of a hill that was the nearest family was a good mile hike and I spent a lot of time by myself because it was the 80s and my parents were divorced and there was a lot of daycare options, and so I spent a lot of time just trying to make up games for myself and trying to find books and media that I could really get into. Kind of escapes you.

Jennifer Logue: 3:33

So cool, so using your imagination at a very young age.

David Clifford: 3:37

Yeah, I wouldn't say that I'm a creative person per se, but I have been willing to escape from the reality every so often, just like everybody else.

Jennifer Logue: 3:50

Cool. Well, when you eventually became a software engineer and that's really cool Do you remember when you first got into computers?

David Clifford: 4:00

Well, I can remember when I first saw a computer I was six years old and it was the heart of it. You know, our kids were really big back then and my, my uncle, had a what we call man cave now, but he had a, you know, a basement with a ham radio and that was the first time really saw a computer and I was like, wow, we could actually interact with it. You know, and that was probably about 1980, 1981. But my family was so poor we couldn't afford a computers. And this was back before, you know, computers were at every single desk. In fact, my mom was a school teacher and she had three kids, you know, just she, she was overworked and underpaid, that's for sure, and she would rent out a Mac like the original Mac 19 and four Mac and bring it home for the weekend. So we could, you know, point and click, so you know that kind of stuff. But it was always consuming. The computer was never programming on it. In fact, growing up in the 80s and early 90s, you know, only nerds, you know, worked on, you know, actually did programming. And I mean, I'm a nerd now, I totally, I totally accept that, but back then it was really a bad word to be a nerd. You know it was. You know you were spending your time in your uncle's basement looking at computers. You know that kind of stuff.

David Clifford: 5:36

But it was, my original plan wasn't to get into computers. My original plan was I was going to be a doctor because I was going to go solve this epilepsy thing. And I went and got a biochemistry education and, you know, did the MCATs and learn the Krebs cycle and, you know, did all the you know pre-med stuff you normally do and I had some problems with my seizures. That made me reassess and see if, you know, an eight year investment into academics with a, you know, huge school loan, is that something that was viable for me at the time. And I really started looking at other things and I had heard from a friend of mine or family friend and said, hey, you could be a computer programmer from your house. And there's this and this was like 93, 94. And I was, you know. You know I could, I could. It was something I could do in my own free time and that's kind of where I picked up actually programming.

Jennifer Logue: 6:44

So Well, I don't necessity.

David Clifford: 6:46

Yep.

Jennifer Logue: 6:47

And it's funny, I oddly enough kind of fell on that same lane with what I'm doing with advertising, being a copywriter. I mean, that's a job that can be done remotely, you know. So there's that. And there's, you know, making music from home, like recording music and producing music. That's something else. You know that I'm still every day, always adding onto my skills, but I never the whole touring life like being on the road, living out of a car. It seems so cool. But especially with what's happened in the last eight years in my own life, I've had to kind, of course, correct and be like what's actually. You know, sometimes our limitations can refocus us.

David Clifford: 7:35

I don't think I have as limitations. I think of it as just alterations to your path, right? So it's not literally a limit, it's. You know, you're just going to a path around it.

David Clifford: 7:44

Yes, and you put a lot of being creative with your path right, Like looking at your life and being, you know, is it, is it this? You know? I still want to get to the same destination. I really want to be a good person, be happy and all the different things everybody else wants to do. But looking at from a creative element, you can say, okay, look, you know, maybe the path that everybody else goes down is not the one that's for me, because I have, you know, all these different things I have to worry about, which are also priorities.

Jennifer Logue: 8:13

Yes, I love your perspective on that and I'm working on my vocabulary shift. Like words, like limitations, like what did you, what did you?

David Clifford: 8:24

relabel it as I was just talking about it going around a path. You know different paths, right?

Jennifer Logue: 8:31

I like that so cool.

David Clifford: 8:35

Yeah, I had to do that shift pretty early on with my epilepsy, right. I hate you know. Let me take a step back. Most people context, most people hate their epilepsy, right. I mean it's, it's this thing that takes over their lives and they just hate every aspect of it. And I was definitely like that. I mean I'm not a big fan of my epilepsy, I'm not a fan of seizures, right, but I have come to grasp that, you know, and it took me many years to get here, but it, like epilepsy, shaped my life in such a way that I'm the, the only way I could be who I am now is if I had epilepsy, right, and it made me do many things, many make many decisions, make many take many risks that I wouldn't normally take. And you know, I'm still. I still it's kind of more of like a epilepsy is kind of like a an old family member, right. You know, maybe you don't want to hang out with them all the time, but you know you're glad that they're in your life at one point.

Jennifer Logue: 9:43

Yeah, On that note. When were you first diagnosed with epilepsy?

David Clifford: 9:47

I was diagnosed when I was 15 and a half-ish. I had my first seizure at 15 and a half. I was in a car accident when I was 15 and I was a passenger in the car and a car he boned me. He boned my the passenger side and the car cage collapsed and the car cage hit me on the right side of my head, right where my ear is, and I got knocked out and you know, and I was trying to be a, you know, trying to say I really didn't affect me all that much, and this is before. You know, concussions were a big thing and you know. But about six months later I had my first seizure and and I didn't really get help for a good two years, but they just got worse and worse and worse and worse.

Jennifer Logue: 10:47

Okay, wow so, um, wow. So, once that happened, like how did your life change?

David Clifford: 10:55

Well, it was like the worst John Hughes movie you've ever seen. I had my first seizure on on a Friday, by Monday morning. You know, it was like the old high school movies. You walk into the cafeteria and everybody just kind of you know shut talking about you behind their back. You go to a table and everybody scatters, you know. So I had, I had that experience where you know, no one understood what seizures meant they. You know, I'm sure in in 91, there was still a lot of people thought that they could catch epilepsy for me, which you can't, and so there's still a tremendous stigma around it. So so how did I mean other than that? Oh, also, you know, my, my mom really didn't take that news. Well, right, she, she sat me down. It's one of those events in your life where you can remember everything.

David Clifford: 11:53

But, she sat me down and said to me you know, david, don't tell anybody you've had seizures, because people will come and take you away and put you in asylum, right, Because she was. She was in a different generation where you know people, you know they had medical institutions and you know she was really under the impression that that's kind of where people with epilepsy should be, and so I kind of had to fight that own stigma at home, right, which is one of the reasons why I didn't get help for a couple couple years.

Jennifer Logue: 12:24

Wow, and similarly for me, like I actually had a neurologist, one of the first neurologists that I saw after having my first seizures. She told me, like not to tell anyone, and you know, keep it to myself. I want to be able to get a job. Guys don't want to date me. So that was a big and that's even today. I mean, this is like modern, is like what eight years ago? Right Not all that far off in the past. There's so much stigma still.

David Clifford: 12:55

Yeah, we're trying to. I mean, you and I are trying to fight it every day and more people talk about it. The best that is going to get it's just really slow. It's really really slow. This this disease is, you know, is at least documented to be 4,000 years old. They have ancient stone tablets where people were describing seizures. You know we're it's going to be a slow problem. We have to kind of expect it's going to be a slow progress, but as long as we're making progress every day, it's good.

Jennifer Logue: 13:25

Yes, and we're talking about it. And now, did you think what epilepsy you talked about, how it altered the course of your life from going to medicine and going into tech. Did you have any challenges once you were in, once you were working with epilepsy?

David Clifford: 13:45

Oh yeah, oh yeah. And I worked for a lot of companies who really supported me and were very supportive about my, you know, giving me reasonable accommodations around my epilepsy. But then I also worked for a lot of people who were just not willing to support me at all and I quickly realized, based off of my career, that there's, you know, with tech, there's always another company, there's always another startup Right. And so when I started hitting those, those people who are really had a really stigmatized version of epilepsy and really didn't want to, you know, support me, I turned around and I would go find a different place Right, and I totally understand that I had, I was very lucky to do that. I mean, I wouldn't be able to have that in many other jobs, many other fields.

Jennifer Logue: 14:42

Right, so the tech was a blessing. So, to have those opportunities, but that's not always the case over people with epilepsy, depending upon their education level, and you know it's like navigating employment. That's a whole. That's a whole episode in itself, whole dedicated podcast episode.

David Clifford: 15:02

Yeah, I have. I put three episodes together about that, about careers and kind of when to tell your, your employer, about your epilepsy and stuff like that. And that was really important to me was to kind of you know how it works inside of the United States is that if you don't have a job, it's really hard to get health insurance, and if you don't have health insurance it's really hard to get treatment for epilepsy. And so part of the epilepsy community should be really trying to help people find jobs, keep jobs and move forward.

Jennifer Logue: 15:36

Yes, it's so important, Like health insurance is everything here at least? Like, as you said, you really can't get the help you need. Now, there was a turning point for you in your 30 year long battle with epilepsy and you had this surgery. Do you want to talk about that?

David Clifford: 15:59

Well, I can tell you a little bit. That turning point was a little bit before the surgery, so I won my in 2017, the early portion of 2017, I had a status epilepticus event, which is basically for people who don't know it. I mean, epilepsy can be fatal and really long seizures can cause a lot of damage. The vast majority of convulsive seizures last, you know, one to two minutes. If it lasts for more than five minutes, call a doctor right away. Mine were lasting like seven minutes, and then I went into another seizure right afterwards and so it was clustering and so I was out for about half an hour and in total, and it caused a lot of damage on my side of where my seizures start and that was the kind of the, that was really the the universe telling me you got to take a look at this a little bit more clearly.

David Clifford: 17:08

You know a life of seizures and the life of meds are not going to be, you know, very useful for me, and it's actually one of the reasons why I retired is because there is a lot of damage and I really can't code at the level that I was. You know, you know it's hard for me to admit that, but you know. You know it's, it's it. You know it takes so much to to be able to code at that. You know level and I just can't.

Jennifer Logue: 17:41

So then you, then you went in for a surgery, yeah, at Stanford.

David Clifford: 17:47

Right, I met my first. I read my neurologist at Stanford and I said to her that you know, I had a big chip on my shoulder and said, hey, I bet you can't even help me. I've seen, you know, by the time I probably seen you know 17 doctors or so. And she was like, you're right, I probably can't help you, but let's try. And I was like, oh, that's a little bit more different than every other doctor I've met and we kind of hit it off and we did the whole. You know, here's all the new meds you haven't tried, and the ketogenic diet. And I went to the epilepsy monitoring unit and didn't have a, went there for five, for nine days and have a seizure, which is the longest I've gone, Like, and I went back again and had like three seizures in five days and so they were able to localize where my brain starts and based off of that they said I was a good candidate for neurosurgery.

Jennifer Logue: 18:44

Wow.

David Clifford: 18:45

Yeah.

Jennifer Logue: 18:46

Cool, because I don't know many people who've gotten surgery, but it's helped.

David Clifford: 18:52

It has helped I. It took me about a year because there was a lot of different side effects that from the surgery but I've been seizure free since. So you know, imagine going having a a focal to bilateral tonic-clonic seizure and I'll talk about what that is in a second but having a seizure every three days.

Jennifer Logue: 19:14

Oh, my God, david, that's great.

David Clifford: 19:16

To having nothing for six and a half years now.

Jennifer Logue: 19:19

Oh, David, that's amazing.

David Clifford: 19:21

I know it's great. I wish everybody could have that same outcome. Part of one of the reasons that really pushed me to do brain ablaze was to, number one, get more neurologists out there, but then also to help the people to understand this gauntlet of you know how long does this process go and you know there's just so many things that they're just misunderstood by patients in this field.

Jennifer Logue: 19:50

Yes, you really have to be your own advocate. I've, I'm learning.

David Clifford: 19:55

Yeah, more than that. You got to find somebody who's done it and talk to them about it, right, because you know there's a lot of people who. You know it's human nature to think that something's fleeting right, to think that an illness that you have is only going to be, you know, a month or two months. You know, when we break our arm we go into the hospital, they put into a cast. Two months later you're done.

David Clifford: 20:21

But with epilepsy it's a chronic, non-curable, you know condition, and so you have to be there to invest eight years of your life, you have to be there to understand that. You know it's not just two months of scans and tests, it's a progressive thing that you have to get. You have to get through and there's always more options, that's. The other thing is that many people don't realize there's you know there's what there's 70% of us can control our you know seizures through meds alone. But that extra 30% which is where I was and you know there's a whole bunch of different things you can go to, like VNS or RNS or neurosurgery or the ketogenic diet that you know you just have to keep on searching and searching, and searching. It's not easy. Not saying it's easy, I'm saying it's really hard, but you know there are other things.

Jennifer Logue: 21:18

You got to keep trying, you know so. But because of this creative space, we're going to take a little bit of a break and we're going to talk about creativity a little bit. What is your definition of creativity, david?

David Clifford: 21:34

Well, my creativity. As I said I think we said before I don't think of myself as a creative person. That am. I talk to my wife and she was like what are you talking about? You have patents, that show. You know you're the first person to do something. You have your podcast. Your podcast is really, you know, I think of myself as an engineer and I'm like you know ones and zeros, you know ethernet ports, you know that kind of stuff.

David Clifford: 21:57

So what I think of with creativity is that a system that is basically taking in, that's an input of inspiration and an output of execution, right. So you got to be inspired to be able to do something. You have to be able to execute to be able to get your inspiration out in the world. Now I struggle with the fact that I don't have any talents that other people would think, the vast majority of people would think is creative. You know there's not a lot of like system software. You know instructions or you know code examples inside the Louvre, for example, right, when most people think of art, they think of you know, the music, the sculpture, the artists you know, and so part of me is trying to get that creative outlet and the way that I know I can do and that's creative in itself.

Jennifer Logue: 22:53

Yeah, well, I think creativity applies to everything. I think it's way beyond the arts, you know, and a few guests on the podcast, like Jimmy Jerezza, talked about it as problem solving. He's a craftsman, you know. He can make anything, but that's what you do, you know, as an engineer, it's problem solving. You have to take that inspiration and execute to find the solution, and that takes magic dust. Like that's creativity, you know, and I love the definition you gave too. That's cool.

David Clifford: 23:25

Yeah, what really gets me is the you have to go find big problems right. Big problems have big solutions, and that it's so much easier to be inspired by big problems and it's so much easier to execute big problems because no one has done it before. You don't have 100 people telling you that's not the right way of doing it. You know so and so a lot of what I've done in my own career is just trying to find really big problems that no one has solved yet.

Jennifer Logue: 23:53

Awesome, and that's what you're doing with brain ablaze too. I mean, you're helping so many people already, and so and I guess that would be a good segue to talk about brain ablaze.

David Clifford: 24:08

Okay, yeah, so I really started brain ablaze. It totally started us completely different. I was actually working with Stanford, talking to their medical students about my experience with tech and my experience with epilepsy, and I was with the ultimate goal of trying to get more medical students into neuroscience and neurology. And because there's always amazing tech things that are happening inside of neurology that's really changing the game and trying to get people excited about that because there is a short of neurologists in the world. And so I started this podcast is okay, I don't wanna.

David Clifford: 24:54

By the way, it really worked for the first two years. I was at Stanford doing that and my plan was okay, I'll just get these lectures, record them so I don't have to go to all the different medical schools in the United States. And started off with four episodes of the podcast and then I had people contacting me from Canada and the UK saying keep on going, and I was like, okay, so four became eight and then eight became 16, and then around 50, I kind of ran out of ideas to go on. But it really started off with this trying to explain epilepsy in a way that normal people would get it.

Jennifer Logue: 25:41

So cool and so important and I'm learning so much just by listening to the episodes and, as I said, following you on Twitter slash X, and that's so cool. Then you made a website, or did the website come before the podcast?

David Clifford: 26:00

It was kind of in tandem. So what happened is that the podcast was like, hey, I need to have a website to host the podcast. So, okay, I'll make a website and then grew it organically. It really did grow organically. People would say to me oh, I would really like to tell my story and so, okay, I'll create a blog and I'll allow people contributors to tell their story. Then I created a store because people were like I need to have an epilepsy shirt, Okay, and I just kind of grew it to the point where we started having support groups and then people wanted support groups in the UK. So I was like, okay, I'll have West Coast and East Coast support groups, that kind of thing.

David Clifford: 26:47

I'm just as I said, I'm just trying to help. It's funny that you say I'm helping a lot of people. My plan for Benjabes was to help one person. If I can help one person, that's the goal, right, and I'm really surprised on how well it's gone. But again, anybody can do this, Anybody can go out and do it, and it's much better because I only have one story. My epilepsy story is completely different than yours.

Jennifer Logue: 27:14

Yeah, and there's a lot of people, as you said, with epilepsy 65 million. I didn't realize that was the number now.

David Clifford: 27:21

No, there's an estimate. The World Health Organization says it's about 50 million, but because of the stigma. There are other estimates that suggest that because the stigma is so high, instead of some countries, that the number is much higher than that. Right, so it's somewhere in there.

Jennifer Logue: 27:43

Wow, it's Now. I do wanna ask Braina Belize, how'd you come up with the name? The copywriter in me wants to know.

David Clifford: 27:52

I get that a lot. I get that a lot. I knew I had to have the Z in there, right, because marketing Xerox and it's very memorable to have that Z sound and I knew I needed to have something that was kind of generic. I didn't wanna have epilepsy in the actual name, so I was trying to make a metaphor for epilepsy, which is like brain on fire. And then when I realized, hey, brain ablaze could actually be that you're having a seizure, but also that your brain is constantly working, you're trying to. You know, the energy is always going through your brain, the fires inside of you, and I realized that metaphor of brain and fire just really meshed well together and I chose that.

David Clifford: 28:41

Now, saying that it's also been somewhat of a drawback, right, because brain obviously Belaze is big in some portions of recreational drug use, and so people when I first started were like, oh, they thought it was dedicated to cannabis use and now, with microdosing being such a popular thing in Silicon Valley, I'll get DMs every month or so going hey, can you help me with? And I'm getting this stuff, and so it's like I have to tell them no, no, it's all about epilepsy. And then they go oh, I'm not interested.

Jennifer Logue: 29:24

So oh my gosh. Yeah, I mean, there's always going to be drawbacks to any name.

David Clifford: 29:29

Of course, of course.

Jennifer Logue: 29:31

Especially with how fast the world is moving and with the internet, like we're just creating content so quickly too.

David Clifford: 29:36

Yeah.

Jennifer Logue: 29:37

I don't even know what the stats are now, but I yeah, it was.

David Clifford: 29:42

Sorry, I have a tendency to interrupt.

Jennifer Logue: 29:44

Oh no, and I have a tendency to lose track of what I was saying.

David Clifford: 29:48

So I have that tendency too. Yeah, it was also really interesting to try to find something that didn't already have a URL taken Right. So that's a whole different process. But I had about 20 different names and narrowed it down to bring in a blaze and then just kind of took it from there. So the logo is actually it's half purple, half yellow, the brain looking at one low being purple and one low one half being orange, and that's because my seizures start on the right side and that's where the fire was inside of my brain. So circumvents come back to the founder Awesome.

Jennifer Logue: 30:35

And so I want to ask well, we talked about the mission already of Brain, of Blaze, and what year did you start it? I don't think we covered that.

David Clifford: 30:44

Yeah, so I started it at the worst time ever. I started on January 1st of 2020. Oh yeah.

Jennifer Logue: 30:54

It was. It was the best time, because we're all home right.

David Clifford: 30:58

Yeah, I did not. Obviously, I didn't see what was going to happen in 2020. But basically I started off just very slowly. I'm just going to put these four episodes out and see what happens. And then when everything when 2020 happened and COVID and all that stuff, we were all stuck in our house. It was a really good way of dealing with the stress that was going on during that time when we were doing crazy stuff. I'm sure we'll look back in 50 years going what and look at it fondly, but during that time it was a very good stress reliever.

Jennifer Logue: 31:43

Cool. It's always good to have a creative outlet when the world is on fire, right?

David Clifford: 31:48

Yep.

Jennifer Logue: 31:50

So what three things have you learned about epilepsy through the Brain of Blaze community?

David Clifford: 31:56

That's a great question. I really went into Brain of Blaze thinking, oh, I know a lot about epilepsy because I had gone through the gauntlet. I'd been an epilepsy advocate for at least 20 years by that time. But then when I started meeting thousands and thousands of people, I started realizing that my story is just like this little pinprick in the water, right, and there's so many people like you where we might even share the same type of seizures. We have a totally different experience with our family background or our treatment plan or dealing with our doctors or dealing with our meds, and that is amazing.

David Clifford: 32:40

I'm also pretty amazed that most people outside the epilepsy community think that epilepsy is a solved problem. Right, they don't understand that 30% of us, even with meds and the medications has exploded since the 90s and there's like 40 different meds now. But even with all those meds, 30% of us can't manage our seizures, and so there's a lot of people who are like our condition has been kind of written off, I think, by the vast majority of the population. Now, once you're in the epilepsy community, everybody's very passionate and one of the things I really learned is there are a whole bunch of people with epilepsy out there who are really passionate and really want to help out. There's a lot of parents of people with epilepsy, and if we all have a voice, we can do amazing things together. It's just a matter of getting people excited about bringing information to the outside world.

Jennifer Logue: 34:01

Yes, and being brave enough to do it with the stigma that does exist still.

David Clifford: 34:08

And being creative about it right, and that too. Yeah, there's this problem we have. I perceive there's a problem that the epilepsy community has that we have been fighting the stigma for so long. We kind of rely on the same tools, we rely on the stats. One out of 26 people will develop epilepsy over their lifetime. We put ourselves into this corner of relying on stats. That we understand, but there's nobody out there who's doing a great job of putting a creative element to get it outside world, Making different things that people like a normal person would be able to understand, Right.

Jennifer Logue: 34:56

They're not even able to understand, but care about. Human story.

David Clifford: 35:01

There you go.

Jennifer Logue: 35:02

I think something that's missing is people can be quick to dismiss oh, your own medicine. Oh, your seizures are controlled, you're cured. But it's like there's so many psychological effects of having epilepsy, like how it changes how you interact with the world, at least for me. I mean like the PTSD of oh what if this triggers a seizure. Like not sleeping right now is a struggle that I'm having, like really not sleeping, and that's a big seizure trigger for me, so it keeps me from being able to do the things I want to do. I don't feel safe to drive, so limits. It can be very isolating. So there's so many elements to having epilepsy that aren't just the seizures and you can't just power through it.

David Clifford: 35:49

Yeah, yeah, and I don't think a lot of people in the epilepsy community understand that I mean. I think I mean I'm talking about. I don't think anybody outside the epilepsy community understands it, but people in the epilepsy community doesn't really understand that either. Right, like there's not a lot of people. Take another stab at trying to explain that.

David Clifford: 36:10

Like, one of the things that I really struggled with was I was constantly making plans and then thinking about okay, if I have to break this plan, how do I? Because I'm going to have a seizure, how am I going? What's my next plan? And oh, if I have to break that plan, what's going to be my next plan? Right, all of a sudden, a afternoon to the park becomes really complicated, you know. Or a business dinner with your boss becomes really complicated because you have to start thinking. You know five or six levels down of. You know, if I can't get there on time, what I'm going to do, what's going to be my excuse. If I have to leave early, what's going to be my excuse. You know things like that and that just overall stress just can be a trigger for most people with seizures.

David Clifford: 37:01

Right, and so, yeah, that was the killer for me was the overthinking of it. You know that also would cause my sleep to get out of whack, and you know, and I wouldn't eat properly and you know all those different triggers that you normally think.

Jennifer Logue: 37:23

What did you? Did you eventually get out of the overthinking Like what did you do?

David Clifford: 37:29

I overthinking is a problem for me in general. It just it wasn't. I never really solved that, I just it was just another. My epilepsy was just another application of the overthinking. Did I ever get over it? I no, I still. You know I'll be a little vulnerable here. Every three months or so I'll wake up in a yeah, sorry. Even though I've been seizure free for for what? Six years, I still, every three months or so, will wake up in a cold sweat having a dream that I'm having a seizure.

Jennifer Logue: 38:07

Oh my gosh that. Yeah, it's a pity.

David Clifford: 38:10

Yeah, yeah, it's. I don't think I've talked to other people about that and they, when you say this, it never goes, that never goes away. So you know it's traumatic.

Jennifer Logue: 38:21

It's traumatic and, yeah, we people, a lot of people, don't understand that aspect of it, but we can educate. So why do you think epilepsy is so stigmatized?

David Clifford: 38:35

Well, the Only. I didn't understand the stigma with epilepsy until I saw a video of myself having a seizure, and so I have a convulsive seizures. Actually, this would be a good place to talk about my seizures. So I have what is called focal to bilateral tonic-clonic seizures. That's a big, big name. So focal means it starts in one place inside the brain, like the origin, and then it goes bilateral, meaning it marches through the electricity, marches through the brain to the other side of the brain, and once it gets to the other side of the brain, I have a tonic-clonic seizure. This is the new word for grand mal seizure.

David Clifford: 39:19

So there's a tonic phase which your body stiffens right, and it's not like stiffening at a gym. You know gym you're working out one muscle at a time. When you're having a seizure, when your body is having a seizure, it will stiffen all the muscles all at the same time. So your bicep, tricep, which you normally don't work against each other, all of a sudden work with each other. So, I'm sorry, work against each other, and then after that the jerking is usually or the convulsions is usually caused by your body finally getting control of your brain, finally getting control of your body, and so you'll gain control for a little bit and your body will start relaxing and then it will lose control and it will stiffen up again, right, and that's called the clonic phase. And so during my focal part it's about 20,. You know it could be really short or it could be really long, but my seizures last anywhere from, you know, one to two minutes, but it feels very much like I used to be a triathlete back in the day and it feels very much like finishing a triathlon, like an international distance triathlon. It's so much work.

David Clifford: 40:34

I think that that was the real thing that made me understand. Oh, when I saw myself have a seizure on video, I really understood how weird, how weird it is and how, you know it's otherworldly to see somebody just lose control like that, and I can see how. When earlier civilizations, you know, thought that there were, you know, you know supernatural associations. Now we know, with science, the advent of the, you know science and all that good stuff we understand how it actually works. And so why is there still stigma in, you know, 2023? I don't know why. Because I think that people with epilepsy have been doing a fantastic job since the 70s of trying to eradicate the stigma. If I had an answer of why the stigma exists, I would do everything in my power to try to, you know, get rid of it.

Jennifer Logue: 41:36

Yeah, they are scary to watch.

David Clifford: 41:39

They are.

Jennifer Logue: 41:39

You know and I know, like for me I actually have like a reaction like oh, just saying the word seizure, like when I can, still makes me uncomfortable, just because of to know what it looks like and to know what it carries. So I'm thinking maybe that's part of it, like the fear associated with it. If you've ever witnessed one, you know maybe it's a loss of control. But these are just my thoughts, I have no idea. Yeah.

David Clifford: 42:09

I think. I think that there's a lot of lately. I think one of the things that happened during the pandemic was you know, seizures are known by the sorry seizures are known by people outside the epilepsy community. You know, I would think that the average person working down the street knows what a seizure is, but they don't know what epilepsy is, because epilepsy is just more than seizures, it's not just having a seizure. You know all the things that you talked about. You know, like dealing with the anxiety and the trauma that's associated with it and the you know side effects, and I mean all those different things. And so I think during the pandemic we had a lot of stigma that anybody who's having seizures is somehow, you know, going through the COVID experience or having later is associated with the vaccinations. And that was really hard for me to, you know to, and I know that a lot of other people were dealing with this, but it was really hard for me to deal with trying to educate people that you know a seizure.

David Clifford: 43:31

There's lots of people who have seizures and none of them have to, you know, have to do with the vaccine, the vaccinations, right, right there's. You know, we have existed for millennia. It's totally natural to have a seizure. It sucks but it's totally natural. There's nothing supernatural about it, there's nothing you know, and that's that's the hard part. Is that just kind of reemphasizing that over and over again it becomes really repetitive and it becomes really difficult to do. But we have to do it.

Jennifer Logue: 44:02

Yeah, I mean to relate it back to music. It's like you might have a song from 10 years ago that you wrote, that you promoted, but it's going to be new to somebody you know. Yeah, if they're in the right place to receive it, if they've never heard it before, like so. That's why it becomes important, I think, to repeat information.

David Clifford: 44:22

That's a really good metaphor. I love that metaphor. I think I've also used music as an example of. You know, I think one of the things that's hard for the epilepsy community is that we really get divided easily. What I mean by that is, I kind of equated, describing the epilepsy community to people who like music. Right, everybody loves music. You know, I like music. My mom was really into disco right Now I can't stand disco right. My brother, my older brother, was really into you know, new wave, right, and I, you know I really was really into heavy metal and, of course, you know my daughter is really into. You know Katy Perry and stuff like that and you know Taylor Swift. What we, what happens is people with epilepsy only care about their little tiny there's, there's. We kind of get simplified into groups.

David Clifford: 45:24

And those groups don't necessarily work all well together. Right there's the. You know there's some people who, you know, only care about their type of seizures. There's only people who care about the medications that they're on, as opposed to all the medications. Right there's, you know we get stuck in that. You know, talking about rare epilepsies, you know, as opposed to trying to to talk about all epilepsies, not to say that rare epilepsies are not, you know. You know something we should be talking about. It's just, you know. I think a lot of people are getting pigeonholed as opposed to like being able to be creative and talk about everything at the same time. It's really hard.

Jennifer Logue: 46:08

And create a movement together to really raise awareness together.

David Clifford: 46:13

Right, imagine, you know, like a music magazine's back in you know, you know my day, right, you'd have the R&B. Or, even better, like, as you just talk about the lists, right, the R&B list, there's the you know what top 100 lists, there's the rap list. I mean, it's really hard to make a you know list of everybody when everybody is so focused on their one little column.

Jennifer Logue: 46:38

Yes, that's a really good point. Now, how can listeners on the podcast support people living with epilepsy right now?

David Clifford: 46:49

The number one thing you can do is learn seizure per state, right? Seizure per state is really simple. It doesn't involve a lot of work. Like you know compressions or you know things with CPR, you know you can learn it in 10 minutes, and it's one of those things where you just never know you're going to need it until you do, and it's always good to have that type of knowledge.

David Clifford: 47:20

The other thing I think you can do is, if you know a person with epilepsy, ask them about their epilepsy, right? I think there's a lot of people who are like, yeah, my, you know cousin has epilepsy. And then when I say to him, well, have you asked them? You know what they're going through and it's like, well, not really. Well, you know, this is a great time to make that extra effort to say you know, to reach out to them and say, hey, I really want to understand what you're going through, because, as you said, epilepsy can really be isolating and a lot of us, it doesn't really matter what we're going through. We just need somebody to say it's okay, you're going to be okay, you know, I want to learn more about you, right? That's just something that all humans need, and if you make that extra effort, I guarantee person's going to pay you back.

Jennifer Logue: 48:14

That is wonderful advice, david. Oh my gosh. Yes, I think that's something everyone can do, like and really make a difference in someone's life who's living with epilepsy, not just for their safety, you know, but for their you know their soul too, to feel seen and understood.

David Clifford: 48:32

And you get to the other person who's asking the question. It gets to better their lives because now they know about something they didn't know Exactly. That's what we're all looking for. We're all looking for you know that, that you know knowledge and interaction with the person on a different level that we can't do.

Jennifer Logue: 48:49

That's so true. What's next for you, David?

David Clifford: 48:53

You know what I've embarked on, the best project I've ever worked on. I have a daughter who's seven and she's now become my life and you know, helping her Best hardware project I've ever worked on. And yeah, no, I, that's kind of my focus right now. I'm going to keep on going with Brain Ablaze and helping the epilepsy community where I'm going. I've been also working with other epilepsy organizations, helping them to get started. You know, going through the, the, their charity status, and you know, getting them focusing on what they, what they want to do with with epilepsy awareness and helping other people and that's kind of, you know, keeping, keeping going. You know it's kind of boring.

Jennifer Logue: 49:45

Not at all, oh my gosh.

David Clifford: 49:47

It's kind of boring. Sorry about that, it's kind of boring, but it's yeah, keep going trucking, kind of thing.

Jennifer Logue: 49:55

Yeah, no, you're doing great work. I don't think it's boring at all. Oh my goodness.

David Clifford: 49:59

Every so often I look at Brain Ablaze and I'm like, eh, does it really need to exist, because this is a lot of work, especially since the the. You know what's been happening at Twitter lately and and that has been really difficult to. You know, keep that community alive on Twitter. But then you know, after having second guessing myself, I often get feedback from other people going keep it going, keep it going. So we're, you know, I'll try to keep it going as long as I possibly can.

Jennifer Logue: 50:35

It's a purple light in the dark, so yeah, there's, so that's.

David Clifford: 50:39

The other thing is there's so many other great candidates, candidates advocates, on on social media too. So you know, reach out to those people. We try to do a Friday follow, but you know just there's so many of us out there trying to do. You know you're doing great work, right? You know there's just so many. I'm having a hard time thinking of the actual names because my epilepsy brain.

Jennifer Logue: 51:06

But no, I totally feel you. I actually I was just editing my interview with Jessica Kenan Smith from Living Well with Epilepsy.

David Clifford: 51:14

Yeah.

Jennifer Logue: 51:15

And that was a great interview too. But yeah, like this month, it's going to be all, as I told you, it's going to be all purple interviews. So it's my little thing that I can do with my you know, my podcast, being that I'm new. But yeah, it's, it's good to get all those voices out.

David Clifford: 51:35

You're doing great. I mean the. I can see that you really enjoy yourself and that's you know. You said that you know in your what did you learn over the year of podcasts? Like you know, you really understand that you really have to enjoy it and I really see that it really does come across inside your podcast and I'm so happy that you found something that makes you so happy. Right, I mean that's part of it, yeah.

Jennifer Logue: 52:01

Especially, like you know, with where I'm at now, like on the days I can't drive, I can do this and it's, it gives me, it keeps me going, it's, it's my way of trucking along. So but, david, thank you so much for taking the time to be on Creative Space.

David Clifford: 52:19

It was a lovely interview. If you ever want to give me a call, definitely do it. I would love to to you know, just talk with you. Have a cup of coffee Right, awesome, definitely. Let me thank you for you know having me on the podcast and I really appreciate the work that you're doing.

Jennifer Logue: 52:36

Thank you, david. Likewise, for more on David Clifford and Brain Ablaze, visit brainablazecom or search for the Brain Ablaze Epilepsy podcast on your favorite podcast app. And thank you so much for tuning in and growing in creativity with us. I'd love to know what you thought of today's episode, what you found most interesting, what you found most helpful. You can reach out to me on social media, at Jennifer Loge, or leave a review for Creative Space on Apple podcasts so more people can discover it. I appreciate you so much for being here. My name is Jennifer Loge and thanks for listening to this episode of Creative Space Until next time.