On this episode of Creative Space, in honor of Epilepsy Awareness Month, we chat with Jessica Keenan Smith—epilepsy warrior, advocate, and founder and CEO of the website Living Well with Epilepsy. Listen as we explore her inspiring journey, from navigating her diagnosis to using her creativity to create a platform for positivity and support.
Jessica's story is one of resilience and strength, as she shares her experiences growing up with epilepsy, the limitations that it brought, and the unexpected positives that came out of living with the condition. She emphasizes the need for a competent neurologist who understands your unique needs and a strong support system to manage epilepsy. Jessica's insights on how constraints can foster focus offer a fresh perspective on dealing with life's challenges.
Finally, we delve into Jessica's empowering work through Living Well with Epilepsy, a platform she created to support those living with the condition. Having managed epilepsy for over two decades, she understands the isolation that societal stigma can bring and stresses the importance of breaking free from it. Jessica's message of hope is a powerful reminder that no one is alone in their journey. Tune in for an enlightening conversation that promises to inspire and motivate.
For more on Jessica and Living Well With Epilepsy, visit: livingwellwithepilepsy.com.
To sign up for the weekly Creative Space newsletter, visit: eepurl.com/h8SJ9b.
To become a patron of the Creative Space Podcast, visit: https://bit.ly/3ECD2Kr.
SHOW NOTES:
0:00—Introduction
0:55—Jessica’s current battle with ovarian cancer
2:41—How we initially met
3:20—The stigma of epilepsy today
5:20—The epilepsy numbers could be much higher
7:35—SUDEP (Sudden Unexpected Death in Epilepsy)
9:53—The story of starting Living Well With Epilepsy
12:42—Jessica’s early life in Boston
14:30—Choosing Fordham University and city life
15:00—Getting diagnosed with epilepsy
18:50—Theater and working at record labels
22:22—Eliminating choices to become more focused
23:14—Jessica’s definition of creativity
25:41—Does epilepsy affect creativity?
29:00—The mission of Living Well With Epilepsy
32:49—Epilepsy definition for those who don’t know
39:00—Not wanting to have an exit strategy
44:55—”I have people around who love me.”
46:15—Isolation and epilepsy
52:00—What made me reach out
54:00—What’s next for Jessica
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.
On this episode of Creative Space, in honor of Epilepsy Awareness Month, we chat with Jessica Keenan Smith—epilepsy warrior, advocate, and founder and CEO of the website Living Well with Epilepsy. Listen as we explore her inspiring journey, from navigating her diagnosis to using her creativity to create a platform for positivity and support.
Jessica's story is one of resilience and strength, as she shares her experiences growing up with epilepsy, the limitations that it brought, and the unexpected positives that came out of living with the condition. She emphasizes the need for a competent neurologist who understands your unique needs and a strong support system to manage epilepsy. Jessica's insights on how constraints can foster focus offer a fresh perspective on dealing with life's challenges.
Finally, we delve into Jessica's empowering work through Living Well with Epilepsy, a platform she created to support those living with the condition. Having managed epilepsy for over two decades, she understands the isolation that societal stigma can bring and stresses the importance of breaking free from it. Jessica's message of hope is a powerful reminder that no one is alone in their journey. Tune in for an enlightening conversation that promises to inspire and motivate.
For more on Jessica and Living Well With Epilepsy, visit: livingwellwithepilepsy.com.
To sign up for the weekly Creative Space newsletter, visit: eepurl.com/h8SJ9b.
To become a patron of the Creative Space Podcast, visit: https://bit.ly/3ECD2Kr.
SHOW NOTES:
0:00—Introduction
0:55—Jessica’s current battle with ovarian cancer
2:41—How we initially met
3:20—The stigma of epilepsy today
5:20—The epilepsy numbers could be much higher
7:35—SUDEP (Sudden Unexpected Death in Epilepsy)
9:53—The story of starting Living Well With Epilepsy
12:42—Jessica’s early life in Boston
14:30—Choosing Fordham University and city life
15:00—Getting diagnosed with epilepsy
18:50—Theater and working at record labels
22:22—Eliminating choices to become more focused
23:14—Jessica’s definition of creativity
25:41—Does epilepsy affect creativity?
29:00—The mission of Living Well With Epilepsy
32:49—Epilepsy definition for those who don’t know
39:00—Not wanting to have an exit strategy
44:55—”I have people around who love me.”
46:15—Isolation and epilepsy
52:00—What made me reach out
54:00—What’s next for Jessica
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.
Hello everyone and welcome to another episode of Creative Space, a podcast. We explore, learn and grow in creativity together. I'm your host, jennifer Loog, and today we have the absolute pleasure of chatting with Jessica Keenan-Smith, epilepsy warrior, epilepsy advocate, and founder and CEO of the website Living Well with Epilepsy. Today, we're going to talk about how Jessica took what many would consider a setback and, through the power of creativity, transformed it into a force for good. Welcome to Creative Space, jessica. How are you doing?
Jessica Keenan Smith:I'm doing well. So just to sort of explain the bald head, jen, you know I have cancer, but we're going to focus on the epilepsy today. I have stage 3c ovarian cancer but I'm on maintenance meds and we're good to go. My cancer has, you know, I think for a lot of people cancer kind of brings into hyper focus your why and for me a friend. Well, actually it was anonymous to me but somebody sent a package that had everything that I needed in it for chemo before I even started and as I unpacked the box I thought to myself why are we not doing this in epilepsy, when people go in for their 24 hour EEG or first get diagnosed? And it just brought into stark relief this whole process has brought into stark relief for me all the things that are needed in epilepsy.
Jennifer Logue:Because epilepsy is your passion. You're a warrior, though, jess, on all fronts. Like I'm just so blown away by you, I'm so inspired by you and I know listeners are going to feel the same way about you that I do and it's like, well, it's true, and you're taking this experience now and you're thinking about others already and how like you can translate this experience you found on this new journey into the epilepsy journey for people who are going through it. So that's amazing. I try, yeah. So we initially connected through your website because I had only come out of my epilepsy really publicly in the last year and over the years your website for me has been a resource because I felt really alone and it was refreshing and comforting to see other people out there with the condition living normal lives and also seeing that they also feel vulnerable and all the things that we don't talk about day to day and that people in our lives may not understand.
Jessica Keenan Smith:Well, I think it's interesting that you even frame it as coming out, because I think that that's so true. Even in my very early research I found that there was so much. So my earliest position in nonprofits and living well with epilepsy is not a nonprofit. It's just a website that's available online and it's got tons of resources and hundreds of stories and I work with folks in the scientific community and the patient community.
Jessica Keenan Smith:But I do have a long history of working with healthcare-related nonprofits and my first gig in that space was an AIDS-related nonprofit during the 90s in New York City and I have a vivid memory of photocopying Dr Ho as the cover of Time man of the Year while I was at that job, so it really was like the height of the crisis. So every time I hear about sort of stigma and life and death with epilepsy and people hesitant to talk about it or hesitant to get treatment or people being fired from their jobs, Any of this stuff aligned with epilepsy, it brings me right back to those days where there was so much going on with AIDS and people not getting treatment, people being fired from their job, people losing their partners, etc, etc. It just feels too familiar.
Jennifer Logue:And so many are still in the dark about it. It's one in 26 and not a lot of people talk about it.
Jessica Keenan Smith:We don't actually. I mean that one in 26 numbers is what's used broadly. But we there's and I don't want to spend a lot of time on this but there really isn't anybody working on epidemiological studies nationally or globally for epilepsy. I only know that because the WHO continues to cite 20 year old statistics and the person that did that study is still at the CDC and is a contact of mine. I mean, I hit a certain point where I, because of my role as the executive director of a scientific organization, I have access to people that I can email and say hey, on behalf of this scientific organization, can I ask you a question? And so I got a kind of bug in my ear to ask who's doing epidemiological research at the CDC and the WHO, the NIH and, through the American Epilepsy Society, the International League Against Epilepsy.
Jennifer Logue:Nobody's doing it. So do you think that number could be higher, so much higher?
Jessica Keenan Smith:Oh boy, there are entire countries that don't have a neurologist. There are entire countries that Most of the people who have epilepsy don't even go into the clinic. Again, it's very similar to AIDS, oh my God. So, yes, that number could be so much higher. Oh my gosh, wow. So that's not a statistic that I generally reference, because I believe it's much higher.
Jennifer Logue:Wow, you know what I think? I think my gut's telling me I'd be right. Yeah, that's something. A campaign to advocate for Another campaign.
Jessica Keenan Smith:Yeah, I also had conversations with one of the leading suit up researchers so suit up as sudden unexpected death in epilepsy Terrifying, yeah. And I had, I had dug in on one of her papers and I said what I'm, what I'm seeing here is that it this, could you know epilepsy related deaths could be as high as one in three or one in four. And she said well, yes, there are papers that have have noted as high as 23%, but but I referenced in there one in a thousand, which is the statistic that's commonly accepted. And I said that's great, you did, but your numbers show one in four or one in three and you're saying my math is right from your data and that it could be as high as 23%, because there are other papers that have acknowledged that there's a big difference between one in four and one in a thousand. Big time.
Jennifer Logue:That is like that's something that's very highly likely to happen.
Jessica Keenan Smith:The politics in epilepsy are not helping us kind of get at the true numbers.
Jennifer Logue:Wow, what the chat offline about maybe ways we can make that. I mean, that was a direct like we sat face to face, yeah, and I asked her this we got to make change happen, you know, because it's only people are going to get the help they need and things are going to get better If we don't there's there's a lot of political pressure to keep things, keep this status quo so strange. I don't understand that part. Oh, the world we live in.
Jessica Keenan Smith:But let's talk about something positive.
Jennifer Logue:Let's get back to creative space and living low with epilepsy. Jessica, you've helped millions of people already since the website's been launched. It's been since 2009, right?
Jessica Keenan Smith:Yeah, it didn't become a company until 2017. But but I started it in 2009. I had I had had my daughter and I had had a second pregnancy. I had a neural tube defect and that's pretty common in epilepsy. I had started a job at a Wharton which has like a massive fundraising team, and so I had a toddler. I had a full-time job and not really any time to write a book, but I felt like I had all these resources to share. Twitter and WordPress had just come out, blogger was available and so it was cheaper and easier to start a blog.
Jessica Keenan Smith:When I started, around the same time that I started the site, there was still no epilepsy walk. Epilepsycom was just acquired by the foundation Wow. So it was like very early days and there was really no place for people to share their stories. So people from all over the world started asking for a way to share their stories, so cracked up in the back, taught myself out of code I mean, it was blogger those days. It was easier. It was just HTML, so just wrote memory.
Jessica Keenan Smith:So I created a navigation and you know, the site kind of grew from there and it's kind of like a sense become you know, a WordPress site self-hosted, so on, and through kind of frustrations, as every time I hit kind of a, you know I really want to do X in the community and find continued roadblocks, somebody will say to me well, why don't you just do blah to serve yourself? Yeah, and I'll get so frustrated that I'll attempt to do that. And each time that happens the site kind of pivots. That and that's how the epilepsy blog relay came to be, that's how I moved from blogger to WordPress, etc. I mean, that's sort of how the site has continued to grow.
Jennifer Logue:And the evolution over time yeah. The pivots, the different iterations, yeah. So go way back. I'll create a space. I'd love to go way back into someone's journey at the beginning. So where did you grow up and what was your childhood?
Jessica Keenan Smith:like Sure, and this brings us back to our connection, which is Fordham.
Jennifer Logue:Yes, Such a small world.
Jessica Keenan Smith:I know. So I grew up in the Boston area. I am part of a pretty big Irish Catholic family. My mom is first generation American, so grandma was on a farm in Kerry. My auntie, her father, was out of Sligo, so we had mandatory Sunday dinners at grandma's house with all the cousins and the aunts and uncles I mean. That was. It was Sunday, church filing's basement and dinner at grandma's, and then everybody was in the area. Thankfully I have a group of cousins that are like each kind of a year older than me, and then my sisters are eight and 10 years younger. So I wasn't the first to leave town, but I was the first in my immediate family and it was a big deal. It was like oh my God, you're leaving, you're leaving Boston.
Jennifer Logue:I'm going to be in New York City, of all places.
Jessica Keenan Smith:Yeah, don't you know. But my dad had worked for what was the phone company and then AT&T and then Nine X, but half his team was in New York and half in Boston. So we had spent time kind of growing up like going to the theater, going to Times Square, you know, like kind of getting to know the city. I fell in love with it so I wanted to. I wanted to be in a city where I didn't have to have a car, I could navigate around and just be someplace different. So I definitely wanted to go to the city.
Jennifer Logue:Because you were diagnosed with epilepsy earlier in your life.
Jessica Keenan Smith:When I the summer between seventh and eighth grade, so okay, so yeah, I was meant to go on a vacation with one of my childhood friends and her family and had a seizure, upstairs I think my parents heard a big thud. I had a ton of chronic seizure, and they didn't. They had no information. They had no idea what this was. The hospital wasn't very well informed either. This was 1984. So they didn't know to let me sleep, and so I then seized again. I don't think they even had a very well informed EEG tech. So my parents kind of packed me up and took me from the local hospital to Mass General, and so I was treated by moving forward, and it took a couple of years to find a combo of meds that worked to keep the seizures under control.
Jennifer Logue:Yeah, what was that transition like for you to go from being a normal kid to now having this condition for the rest of your life, like. What was that like to go through at such a young age?
Jessica Keenan Smith:You know what's interesting? I remember feeling like a normal kid. It's not even before the epilepsy, it's before we moved from Brookline to the suburbs Because I was, you know, before fifth grade. I was like, had all my friends, I knew everybody. I was a city kid. And then we moved to the suburbs and it was we moved to a town that everybody had grown up there, everybody knew everybody else and I didn't know anybody. And then, like a year and a half, two years later, I started having seizures. So it's like I was already still. I was already the weird kid. Yeah.
Jennifer Logue:And then I started having seizures and it just got that much worse.
Jessica Keenan Smith:Thankfully I had made like a nice group of friends and they stuck by me and they were good friends all the way through high school and thankfully my seizures were somewhat reasonably I mean within the scheme of things reasonably easy to manage. Didn't feel like it at the time, obviously, but looking back at you know, and knowing the broad spectrum of how complex epilepsy can be, my seizures were pretty easy to manage.
Jennifer Logue:Yes, because there are so many people out there who don't have controlled seizures and have them so frequently, and it's like it's a blessing. Yeah, it was to be in the position that we're in now, like to have the energy even to advocate. Yeah, because some, for some, it's like so hard to function day to day. Yeah, so.
Jessica Keenan Smith:So I mean I was lucky to be able to finish high school, to go away to college, to continue to live in the city and then eventually get married, get my driver's license, move to the suburbs, so what?
Jennifer Logue:Amazing. Yes, and you're driving. I love it. I actually learned how to drive after, like, I got my well, I had my license but I didn't really drive. But I went, I really went for driving. After that epilepsy diagnosis I was like I'm going to drive, I'm going to be a great driver, I'm determined now. So let's go back to you. Do you remember your first creative outlet back in the day?
Jessica Keenan Smith:I mean, I used to draw as a kid. I wasn't very good. I did theater in high school and college. That was my big outlet in high school and college. And it's funny I didn't realize it at the time but I was on DepaCote, which I read an article after I was long after I was off it, and I happened to do a lot of musicals in high school and college and I could never remember the words, but I had perfect pitch. And I happened to have perfect pitch because I was on this drug.
Jennifer Logue:Oh my gosh, what DepaCote gives you perfect pitch yeah.
Jessica Keenan Smith:Bizarre, I don't know, because I can't sing now.
Jennifer Logue:Oh my, gosh, that's weird. Right, that is weird. I guess a nice side effect. Yeah, do you want to have a pub scene then?
Jessica Keenan Smith:It would have been nice if I could have remembered the lyrics too, but I guess we can't have it all already. I guess not.
Jennifer Logue:They're working on it. I guess that other aspect. So you graduated from Fordham, what kind of impact did living with epilepsy have on your professional life?
Jessica Keenan Smith:I guess I would say you know. So my job right out of college was I worked for a record label. I worked in radio promotion and it was fun. It was, you know, sort of back when there were real labels. I worked for Mercury, which was part of Polygram, and at the time I answered 18 lines and my next and I worked for two different guys. It was a lot of fun, but the next position up would have been to basically live out of my car, which I didn't drive at the time.
Jessica Keenan Smith:Yeah, I was going from college radio station to college radio station all over the country and I knew, I knew in college and I knew then that I was never going to be in a sales position where, you know, I needed to kind of live out of my car. So at that point I looked for other positions. My degree was in marketing and I knew anything that required a car was never going to work for me. So I focused on staying in the city, focused on you know, right, you know getting into a marketing position that like would lean heavily on like writing and design and web development, that those skills as opposed to the very like sales driven side of things. So that I wouldn't be asked to to travel and go office to office.
Jennifer Logue:Yeah, it's part of probably part of the reason why I didn't really gravitate towards living out of my car as musician and why I put off driving for so long, because, had I, I mean, I've had an issue behind the wheel before I got officially diagnosed, which would not have been good. But we find a way around these limits, limitations, and the thing is sometimes when you limited, limited a choice, it helps you focus more. Yeah, yeah, there's a bright side to it.
Jessica Keenan Smith:I wish I had discovered the writing earlier, when I was, you know, like true writing, like I, like I've done on living well, back when I was in New York because there were so many more resources there, but I didn't really jump into it until I was I was outside of the city. Okay, so that's a little bit of a regret, but life throws at you what it throws at you.
Jennifer Logue:So at the time that it's meant to happen, right.
Jessica Keenan Smith:Yeah.
Jennifer Logue:For sure. So this is creative space and I love asking this question of everyone. But, jessica, what is your definition of creativity?
Jessica Keenan Smith:I guess I would say my definition of creativity is sort of any outlet that gives you kind of the freedom to be fully yourself. I love that. I mean I twisted my husband's arm to put a whole bunch of raised beds in the backyard and that garden gives me a lot of creativity, you know. And my website, you know, within the parameters of developing that site, gives me a lot of outlets for creativity.
Jennifer Logue:And would you say it enhances your life Creativity? For sure, yeah, it like gives us that purpose in the morning, you know, gives us that no matter what's happening. It's like it gives us that pep in our step. Absolutely, you know so. Absolutely, yeah, for sure. And do you think everyone is creative?
Jessica Keenan Smith:I do. I do, all right, all right. I hear from colleagues and friends oh, I'm not creative, but I have to feel like everybody brings some element of creativity to this world.
Jennifer Logue:I agree, I think everyone is. And if they really think they're not, maybe it's because they're not letting themselves be or they're not seeing other avenues. They do use creativity with it. You know, in like, because I don't think it has to be art, it doesn't have to be. It could be cooking, it could be, you know, gardening, whatever you're doing, to like, add a little life, add a little spice to your day, that thing that brings you joy, like that's creation. Yeah, you know, getting you into that flow state, absolutely. So we all need it. And this is a question I have about creativity and epilepsy. But I always wonder, like, does epilepsy have an impact on creativity? I wonder there's been some pretty creative people that have had epilepsy over the years.
Jessica Keenan Smith:So you know the answer. The short answer is I don't know. There there are types of epilepsy that that really sort of enact the creative centers of the brain. Temporal loge epilepsy definitely gets that piece of the brain going and people that have TLE talk about you know kind of visions that they've seen or you know their seizures themselves are like a hallucination, oh wow yeah, and almost to the point of like I didn't want it to end Right, like which I can't even fathom because my you know I fall on the floor and I'm like a disgusting mess.
Jennifer Logue:So Yo, me too, I feel you. I feel you.
Jessica Keenan Smith:Jessica, yeah, so, and I have a feeling there's our two. They're just in a state, so that's interesting, but yeah, I think there's some element of that, sure.
Jennifer Logue:Yes, I'm going to look into. If I were a researcher in epilepsy I would totally dig into that. Yeah, like, because when the brain is doing different things, like it impacts everything compared to the norm. So it would be interesting to for someone out there to do a study on creativity and epilepsy.
Jessica Keenan Smith:There have been folks that have done that and there was a whole epilepsy and art therapy project that was done for a while and you know how that art therapy kind of positively or or negatively or neutrally impacted the participants, that kind of thing. So some of that's been done.
Jennifer Logue:Yeah, some of that's out there, out the dig into it, yeah, so I love talking with you because you're a treasure trove of knowledge about epilepsy. You, like, know everything and it's maybe it's just because I'm long in the tooth. Well, you're passionate about it and you're you're living it. So it's like when you have that kind of intrinsic motivation and also to help other people, it's just you're always in it and you're seeking out things and sharing the knowledge and we're all really lucky to have you. Just, oh, thank you. Yeah, back to living well with epilepsy. On this part of the podcast, I like to talk about a specific project of yours. So, since listeners are new to living well, I figure this would be a great area to focus on. But you talked a little bit about the origin story of living well with epilepsy, but do you want to go into just an overview of what it is exactly in its current state and its mission?
Jessica Keenan Smith:Okay, you know. So living well with epilepsy has always always had the mission of sort of sharing resources in order to make you know navigating the diagnosis and not just the diagnosis, but living with epilepsy just a little bit easier. And so living here in the US and pretty much anywhere, navigating the health system can be can be navigating the health system can be a challenge and having a little bit of extra information is always helpful. Sometimes that means sharing stories and experiences just to give somebody a little bit of a leg up. So I started the site initially not with the thought of sharing my story per se, but more with the thought of you know, I've had some ups, I've had some downs. So some of the first stories, just by way of example, were how to hire a neurologist, how to find a good neurologist and then how to fire a neurologist. You know, like it's okay and some of my like dearest friends are chairs of neurology, but sometimes they need to be fired.
Jessica Keenan Smith:Sometimes it's not a good fit, and that's okay. You know what is a side effect and you know what does that look like, how to communicate that with your doc, how to tell somebody that you have epilepsy. I mean, it took me a long time to kind of come up with framing the fact that I have epilepsy to somebody. That was fairly new. That would put me in a position of power. And the way I normally do it is I don't do it straight off the bat, but I'll, mid conversation, kind of plunk something in and basically say, oh, you know, I have epilepsy, right. And the person is then kind of put back on their heels like, well, that's not really something I'd forget, right, it's not really something I forget. And now it's weird. So but you've opened the door, so now I can ask questions, right, right, which then puts me in a position of power. So so now you're asking me questions and I've made it perfectly okay to ask questions.
Jennifer Logue:Yes, you want to ask questions. And while we're at it, there may be people listening right now who are like, wait a minute, what the heck is epilepsy? I forgot for us to give a definition of that at the beginning, but you know why don't we do it now?
Jessica Keenan Smith:And epilepsy can affect. So epilepsy is a brain disorder, it's one of the most common neurologic disorders and it's one of the outward effects that people see is seizures to, usually diagnosed after one or two seizures within a 24 hour period. The thing is, a seizure doesn't necessarily have to be what you would normally see on TV. It's not necessarily a fall down on the ground. Term blue foaming at the mouth that is what I have, but it is what everybody has. It could be staring off into space, it could be flailing arms. Seizures take 40 or so different forms and some people have as many as 100 seizures a day. Thankfully, mine have been controlled for 20 years or so, amen. And it can affect people from the first day they're born to the last day they walk this earth, every race, every creed, every age. Does that help?
Jennifer Logue:Oh, that is a very thorough definition. Thank you, Jessica. You're the person to ask. I didn't know about the 40 different types. Yeah, I didn't know that. I knew there's a lot, but I know there's quite that many. Yeah, but, as we talked about before, you started the website in 2009. And where were you in your epilepsy journey then? Like how are you feeling emotionally? Like you set the stage a little bit before, but Um, so I was.
Jessica Keenan Smith:I was in my yeah, caroline 2002. So I was 30, mid-30s, so I had been living with epilepsy for about 20 years. I had a toddler. I had had a second pregnancy where we had a neural tube defect, which is the baby had. So I was 20, I was 20 or so weeks along and found out the baby had hydrocephalus, which is fluid on the brain caused by spina bifida. So that pregnancy did not result in a baby, but living well would not exist if we hadn't had that experience. I started writing, because I started writing letters to her and then I wrote a picture book and then I just started writing and writing and writing. So what was her name? Kathleen Kathleen. So it literally wouldn't exist if we hadn't had that experience. She's very much part of our story.
Jennifer Logue:Oh my goodness.
Jessica Keenan Smith:But I had started a new job, I had had this loss and knew that I just didn't have. I felt like I had a lot of information to share, but I just didn't have the bandwidth to take on writing a book. But I could write little bits at a time, and so that's how a blog started. And then it was much to my surprise that I started receiving stories from people.
Jennifer Logue:Wow, and you're able to give back in terms of just being that resource for people. Yeah, in so many different ways, like not just practical things, but emotionally too. Yeah.
Jessica Keenan Smith:And from that so and from my own cancer journey like I worked with a cancer coach who was diagnosed with ovarian cancer and just having somebody who had that lived experience I found was so helpful and I had been looking for years for a way to kind of multiply my information. And so I looked around to see if there was like epilepsy coaching and there's only a handful of people doing it so in the world. So I started developing a coaching program and I've started and people are responding so positively.
Jennifer Logue:I love that so much, it's so important because it's like until you live through something, it's really hard to just rely on. There's day to day stuff that you need advice on. Like I wish out to you all the time about advice. You know things that I know a doctor couldn't tell me unless they had epilepsy my kind of epilepsy too. Like until you live it, you really don't know.
Jessica Keenan Smith:Yeah, what do I do about excite effect? Who can I call my prescription? You know they don't have my prescription in stock. It's not gonna be available for two days. I don't have it. Guess what you can ask for a partial.
Jennifer Logue:Oh, oh man, I just learned something new. Yes, it's like a partial. Yes, it's terrifying to think, not having my prescription. I mean, that's it's like life or death. Yeah, pretty much They'll give you a partial. Well, we all learned something. We're all learning so much on this episode. This is like practical and inspiring at the same time. Thank you, that's the goal. Um so, with building the website, like, did you have a big vision for it or did you build slowly? Like, did you take it once at a time?
Jessica Keenan Smith:I don't think I ever have a big vision for it. I mean yes and no. Yes, like there are massive things, massive things that I want to to change, to do like problems that I see in epilepsy that need to be changed, but in reality I'm sliding through life on a cafeteria tray so I could show you know what I'm saying. Like I mean, I'd love to be like a, a super professional, amazing person, but that's not the reality of who I am. You know, I, I'm just not. I. I get faced with a problem a number of times. It gets frustrating, and so finally I pivot, you know.
Jennifer Logue:Creativity is problem solving though too. Yeah, like that's part of it. It's like a different aspect. I look at it as like a diamond. You know it has like different, like a cut diamond, it has different cuts to it and it's like, depending on you know how you approach it. It's like you know it's problem solving sometimes, and sometimes the approach is to just take it step by step and iterate as you go. Some people have a big vision, but even big visions don't always go according to plan Right, so cause the world's changing around us constantly.
Jessica Keenan Smith:Yeah, I mean I interacted with the guy who started the Mighty Maybe six or seven but like pretty early days for him and I really got a picture of how he pulled his team together, the venture that he pulled in to get it kicked off, and I had enough information on kind of what happens when you bring in capital like that and that you kind of need to have an exit strategy if you bring in venture money for your project. And at that point I kind of decided like I don't really want to have an exit strategy.
Jessica Keenan Smith:Yeah, it's a really good question or at least I didn't at that point, and so I made the decision to continue to bootstrap it. So I needed to kind of go with the bit by bit so that I could bootstrap it Cool and keep it parallel. If I had wanted the hockey stick, I would have, I could have done that, but I would have needed to have had an exit strategy for sure.
Jennifer Logue:Okay, what would you say have been the greatest challenges in developing Living Well over the years?
Jessica Keenan Smith:Misconceptions around epilepsy, and some of that is derived from what we talked about at the very beginning, which is there is not a proper count of who's actually living and dying from epilepsy. So the conception is that it's a niche market. It's a very small market.
Jennifer Logue:In reality it may not be. Yeah, so that would be the greatest challenge. Yeah, over the long haul. Yeah, what have been the greatest lessons you've learned?
Jessica Keenan Smith:Every time I peel back a layer of the onion, there's like six more onions yeah.
Jennifer Logue:I hate that the truth.
Jessica Keenan Smith:Yeah, yeah, I was surprised myself that you know this cancer diagnosis brought into stark relief that epilepsy is still my focus.
Jennifer Logue:Your passion. Yeah, no, it's incredible Again if there's a theme in your life so far, from my perspective, you just consistently transform pain into power or like setbacks what someone would consider a setback into something beautiful. You know that helps other people, and like it's so inspiring because it's so easy to be defeated and your spirit is always so high. And like what, where do you get your energy from? I had to ask that I wasn't planning on it but, like, as we're doing this interview, I'm like she is super woman, like what.
Jessica Keenan Smith:I don't. I have my husband bring me coffee every morning. I sleep a lot. I don't know.
Jennifer Logue:Okay, okay, I don't know. Coffee and sleep. I mean it comes from within too, though I think just.
Jessica Keenan Smith:I don't know. I have people around me who love me.
Jennifer Logue:Yes, that's that's. There's no power greater than that.
Jessica Keenan Smith:Yeah, so I'm lucky. I'm lucky to have a husband and a daughter who deal with my shenanigans and two sisters who put up with me and cousins who keep me on my toes. And, yeah, I have people around that love me, yeah. And I think that's the best friend, who affects me almost every day, yeah.
Jennifer Logue:Yes, and I think that's an important message too for everyone listening is that having that support system, no matter where you are in life, whether you're an artist trying to make your way into grow your career, whether you're someone struggling with a chronic illness of some kind, whatever you're, or just being a human, I think I think if we don't have a support system, we're really. It's a. It's a much tougher battle and it's harder to keep that energy going, like it's so important to have the right people around you and to be surrounded by love.
Jessica Keenan Smith:Yeah, I mean, and one of the things that I hear consistently in epilepsy is is this sense of isolation, and some of that comes from the stigma that that exists in our society, but some of it comes from this sense of needing to hide. You know all the stuff that comes with epilepsy and I get that, I've lived it. So when you stop hiding, it it's a lot less isolating and it feels a little bit more manageable.
Jennifer Logue:Like the weight lifts it off of you too. Yeah, to be able to be yourself.
Jessica Keenan Smith:Yeah, it sounds very polyam To say it that way, but I don't know. I don't know how to say it but yeah, but it is.
Jennifer Logue:I mean it's, it's, it is a big weight. I know I felt such a weight on my shoulders all the time, like I mean it's really coming out.
Jessica Keenan Smith:But yeah, that coming out is a relief.
Jennifer Logue:It is a big, big relief, but it's people like you who make people like me feel empowered to do so, you know so, jessica, if you could leave listeners with one message of hope, what would it be?
Jessica Keenan Smith:You're not alone. Seriously, there are people all over the world like me I know because I've talked to them who are caring and loving and affected by epilepsy. Whether it's somebody living with Lennox, gaston or Dravet, or somebody Jen like you or me, whether you're living in California or on the East Coast or in Kenya or on the Isle of Wight, like it doesn't matter, there are people out there. You're not alone.
Jennifer Logue:Yeah, and we just have to reach out. If we reach out, it's amazing, like I was following your website for a long time and then I finally reached out and then you pointed me in the direction of support groups. There's so many resources out there, yeah, but like we got to take that first step to get out of that isolation. Do you have any advice for someone with epilepsy who may not be living well at the moment?
Jessica Keenan Smith:I kind of have a question for you. What? Because I feel like there's a lot of people that may fall into that category of not living well. Whether you know, for whatever reason, what made you go from following the site to reaching out.
Jennifer Logue:Actually, this podcast was what initially inspired me to really come out publicly about it, because I didn't realize it was an issue for me, because before the podcast I kind of thought I had conquered this, that my seizures are under control and emotionally I wasn't affected, yeah. But then it was. In that first interview I interviewed Avi Wisnea and he talked about he hadn't written music in 10 years because he was getting over the grief of losing his brother. And in that interview I realized, oh wait, a minute, I haven't written music in a really long time. I just kind of stopped and I tracked it back to when I started going on medicine and when I was having those uncontrolled seizures I realized I gave up on that part of my life of being an artist and that was a major, it was just. But I stuffed it down.
Jennifer Logue:I just was like, okay, I got to focus on getting my seizures under control. I did that and then, once that happened, I was just like, okay, I have to be tough, I have to work harder than everyone else because I can't seem weak and plus, I don't want to and I was always like the positive person, so I didn't want to like not be the light in the room anymore, so I'm like well, if my seizures are controlled, there's no reason why I need to bring it up to people or if you have feelings about it and plus, I don't have anyone to talk to about it.
Jennifer Logue:In my life I didn't know anyone and yeah, but when I had that realization again the onion analogy you used before I was just like, oh, this is actually really affecting me emotionally Now. I didn't even realize it, and when I started peeling the onion back, I'm like, okay, I need people to understand actually what I'm going through. And that's when I finally made that leap to reach out and to start getting connected and being open about it. That was for me. I'm sure it's different for different people.
Jessica Keenan Smith:But so I find that people it's generally about 10 years after they're diagnosed Interesting that they retook and what motivates them is a variety of things, but it's usually a pain point, it's usually a like I've lost my job, I've changed, I've moved, I've. You know, there's a change in my relationship, something whatever. It's never just I was just diagnosed, yeah.
Jennifer Logue:It's. I mean, that's so interesting that it's yeah, it's a pain point, and I guess my pain point was the grief over the artist in me. Yeah, that I I stuffed down to survive, perfect sense. And now finally I'm slowly getting back to her, yeah, peeling the layers back and, you know, sort of taking voice lessons again and just anyway. That's that's my story. But you know, if it weren't for your website, I probably just would have thought I was alone and just would have kept. I'm so glad it was helpful. Yeah, big time, big time. And you know, whenever I hear someone has it, I direct them to it because it's the best resource that I know.
Jessica Keenan Smith:I'm so glad it's helpful. So, and I need to hear these, otherwise, you know, there's there's sometimes big gaps between when I hear somebody's story, like in person, like you know, and, and that just reminds me I need to continue on. Yes, yes.
Jennifer Logue:Yes, yes, yes, we need you, and so I got to ask now what's next for you?
Jessica Keenan Smith:I know you have a lot on your plate right now, because you're a Wonder Woman, and so I just I kind of got it in my craw that I need to start a Nazi store. So I'm still working on the coaching, Okay, and and pushing the coaching and, and I just started an Etsy store. I don't know, We'll see. I don't know Is an Etsy store. I'm sending the, the, the scientific organization, and that has our meeting in March. You know, in the fall, I go to the, the scientific meeting for epilepsy, you know lots of stuff, lots of stuff.
Jennifer Logue:And your Etsy store is that for epilepsy. Yeah, themes for living well, so, oh, that's awesome, okay.
Jessica Keenan Smith:Yeah, I literally just started it this week, so there is not much up there.
Jennifer Logue:Okay, We'll link to it anyway in the podcast episodes. So and well, Jessica, thank you so much for appearing on the podcast. Was there anything else you wanted to cover?
Jessica Keenan Smith:No, I guess. I guess the big thing is I would. I would really encourage people to to really look into the coaching, because I'm finding that that's really helping people have an outlet to to talk about what's really. What is that obstacle, what is that thing that they're grieving? So so that's that's there, and I'm happy to to have discovery calls with whoever needs it.
Jennifer Logue:Wonderful. Well, jessica, thank you so much for appearing on the podcast. Thank you, jen. Amazing conversation, as always, and thank you so much for tuning in and growing in creativity with us. I 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 free 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.