This month Seizing Life® goes on location at the Joey’s Song Freezing Man Festival to speak with two musicians about their personal connections to epilepsy and how they became involved in this multiday music festival to raise money for epilepsy research.
The Freezing Man Festival, held last month in Madison, Wisconsin, is a recent expansion of the annual Joey’s Song concert which raises funds that support CURE Epilepsy Research initiatives. All the artists involved with Joey’s Song donate their time and talents, and several of them have personal connections to epilepsy. We spoke with two of these musicians, Kay Hanley and John Cowsill.
Kay Hanley is a singer and songwriter for the band Letters To Cleo. She has also written music for numerous animated television series, and won an Emmy Award for her contributions to the series We The People. She is also the mother to Zoe Mabel, a young woman who has lived with epilepsy for most of her life. Kay shares Zoe’s epilepsy journey from her first absence seizures as a child through her high school and college years to her life today. Kay discusses the confusing and frustrating diagnostic journey that Zoe and her parents endured before finally arriving at an epilepsy diagnosis nearly 10 years after Zoe’s initial seizures. Kay also talks about epilepsy medications, the vagus nerve stimulator, and the effects that these therapies had on her daughter. Finally, Kay tells how she first discovered Joey’s Song, became involved in the concert, and what it has meant to her to be a part of the Joey’s Song community.
John Cowsill is best known as the drummer for the popular, hit-making, 1960s family band The Cowsills, who were the inspiration for the television show The Partridge Family. John also toured and played with the Beach Boys for over 20 years, and is currently playing with The Smithereens and preparing to release an album with his wife Vicki Peterson of the Bangles. John explains how he developed epilepsy at the age of two following a traumatic brain injury. He discusses managing and hiding his epilepsy while playing with the Cowsills, the effects of medications and seizures on school and touring, and how he became involved in the Joey’s Song concert.
If you would like to know more about the origin of Joey’s Song and the amazing annual concert that raises funds for epilepsy research and awareness, check out this episode of Seizing Life with Joey’s Song founder Mike Gomoll.
You can also visit the Joey’s Song website for more information on the event and its mission.
Kelly Cervantes:
Hi, I’m Kelly Cervantes and this is Seizing Life, a monthly podcast produced by CURE Epilepsy.
This month on Seizing Life, we bring you two interviews from the Freezing Man Festival, a multi-day music festival held in Madison, Wisconsin last month. The festival is a recent expansion of the annual Joey’s Song Concert, which occurs every January to raise funds that support CURE Epilepsy research initiatives. All the artists involved with Joey’s Song donate their time and talents, and several of them have personal connections to epilepsy. So last month we went on location to Madison to speak with two of those artists about their experiences with epilepsy and their involvement with Joey’s Song.
Kay Hanley is the lead singer of the band Letters to Cleo, a songwriter for numerous animated series and an Emmy Award winner for her songwriting on the television series, We The People. Kay is also the mother of a young woman who has lived with epilepsy for most of her life. Kay spoke with us about her daughter’s epilepsy journey and how she first became aware of Joey’s Song. Kay, thank you so much for coming and chatting with us today. I’m so honored to be able to have this conversation with you.
Kay Hanley:
I am absolutely thrilled to be talking to you.
Kelly Cervantes:
I got to see you perform last night, and you are just a bundle of energy and so entertaining to watch on top of just being crazy talented.
Kay Hanley:
Thank you.
Kelly Cervantes:
But today, I’m super excited to talk about your sweet girl, Zoe. And before we get into all of the epilepsy stuff, I want you to introduce us to Zoe and tell us about who she is as a person.
Kay Hanley:
All right. So my daughter Zoe Mabel Eisenstein, she’s 25 years old. She was born in 1999. Very typical child, I would say more than typical. She came out of the womb with a set of instructions that no one else gets. Immediately, she was just like, “Hey, what’s up?” And just engaged with people and just always incredibly bright and engaging and… So there was no reason to believe that there was anything unusual about her. And probably the first grade we started to notice that she was doing this thing where she’d be talking to you and then she’d just go… and just go away for a second. By the second grade, it was happening many a day to the point where even her friends were getting annoyed with her because they thought that she wasn’t paying attention to them. But we weren’t really thinking anything, that there was anything beyond sort of just being a space shot or whatever.
When she had her appointment with her pediatrician, we brought her in and I was trying to say like, I think she needs glasses. We need to test her for blah, blah, blah. Dr. [inaudible 00:03:38] asked, “Well, what is the reason that you think that?” And I tried to describe where she would just go away for a second or two many times a day. And just when I was explaining it, it happened. And he looked at her and he was like, “Oh, she’s having a seizure.” And I was like, “Excuse me. What?” And it was like, “What are you saying? It didn’t register as a seizure to me.”
Kelly Cervantes:
And I don’t know. I mean, I knew nothing about seizure, epilepsy, seizures when my daughter so like-
Kay Hanley:
Right. No one does.
Kelly Cervantes:
You have this idea of what a seizure looks like, what epilepsy looks like, and it’s not that.
Kay Hanley:
Exactly. Exactly. I mean, it can be like that.
Kelly Cervantes:
Sure.
Kay Hanley:
That’s like the convulsive-
Kelly Cervantes:
Now we know that.
Kay Hanley:
Now we know. But I mean, this was shock. And he said they were called petite mal seizures. Well, okay, but where did she get this? And no one said epilepsy. And as you know, epilepsy is still a mystery to everyone, including pretty much every doctor that you will bring your child to. So you’re left to figure out what a petite mal seizure is on your own. And they’re also called absence seizures. So she got on a medication called Ethosuximide, which has been-
Kelly Cervantes:
Did you go and see a neurologist?
Kay Hanley:
Our pediatrician sent us to a neurologist in Santa Monica who was this older woman who was just like, “Oh, yeah, these happen all the time. You’re lucky that you caught it because most children aren’t diagnosed. The doctors think that it’s ADHD, and they get shunted to the back of the classroom and where they stop learning, and then by the time they get into adolescence, it resolves on its own.” And we were like, “Oh, great.” We have these petite mal seizures that will resolve in adolescence. Ethosuximide is a wonderful medication, and it really got her absence seizures under control. She had been having 50 a day.
Kelly Cervantes:
Oh my gosh.
Kay Hanley:
I mean, they just were constant. And if she was tired or… Well, we actually weren’t able to make any correlations between what would make them, because no one told us.
Kelly Cervantes:
Right. You didn’t know what triggers to look for.
Kay Hanley:
No. No. So we would notice, some days we would call it was awful. We were like, “She’s very seizure-y today.” And we still say that because we didn’t have any language. So hers did not resolve in adolescence. And when she was 12, she had her first grand mal seizure. And I also lost my SAG insurance that year. I mean, luckily Obamacare had just become a thing so I was able to get everybody in our family. We all had pre-existing conditions on California Cares. So we got-
Kelly Cervantes:
I want to pause right there for just a minute because I think that’s so important to acknowledge is that I think so many times we blip over the insurance piece of this-
Kay Hanley:
Oh my god.
Kelly Cervantes:
… and how that complicates every facet and just how far we have come. I think there’s a whole generation of young people who don’t recognize that pre-existing conditions were a thing. That that’s not something that they have to worry about.
Kay Hanley:
That they could say like, “You cannot have insurance. We’re not insuring you if you have epilepsy.”
Kelly Cervantes:
There were all of these other barriers and levels that you were managing in addition to a lack of information. So you have to switch doctors. She’s 12 years old, she’s having these tonic-clonic seizures. Where did you turn to?
Kay Hanley:
Well, the doctor, the neurologist wanted to taper her or the one that cut us loose. Wanted to taper her off ethosuximide because she was becoming a teenager. And she thought that even though this was a great medication that was managing, it wasn’t solving her epilepsy. She was still having breakthrough seizures every day, but it wasn’t 50, it was two.
Kelly Cervantes:
Right. It was more manageable
Kay Hanley:
Yes. And she could focus. She wasn’t losing half the day with a complete reorganization of her brain. And then having to recover from that. We got an appointment with the Keck Center.
Kelly Cervantes:
Where is that? What is that?
Kay Hanley:
Which is in Los Angeles, which is a world-renowned pediatric, all-encompassing pediatric care for chronic illnesses. And we found a doctor and we had an appointment and then something happened where… I forget what happened at that point. So that wasted about six months of our life, that whole Keck Medical. And the meantime, I got my SAG benefits back, which is the kick-ass insurance.
Kelly Cervantes:
Kick-ass insurance.
Kay Hanley:
And so the first thing I did was I called… We got a lead on a doctor named Dr. Holder at LA Childrens. Have you ever heard of her?
Kelly Cervantes:
I have.
Kay Hanley:
Oh my god. She is the most amazing knot ball. So now Zoe’s on, she had gone on Keppra, which was an absolute disaster for her and worst for a lot of people.
Kelly Cervantes:
And either worst or it doesn’t, but the side effects can be intense.
Kay Hanley:
It was disaster for her. And in fact, that was what that exacerbated the whole period of time where she was having tonic-clonic seizures. And then we’re trying to find another medication. Anyway, so a year has passed before we finally get in to see Dr. Holder. And Zoe, I believe was a freshman in high school at this point.
Kelly Cervantes:
Oh, wow.
Kay Hanley:
And we’re going through all these different medications. I forget what she was on at that time, but Michael, Zoe’s father, and I and Zoe Mabel finally get in to see Dr. Holder. And we’re talking to Dr. Holder, and she said to us, she was like, “Your treatment is a failure.” And we were just like, “Thank you. It is.”
Kelly Cervantes:
Validation.
Kay Hanley:
Like, “Thank you.” We’d never heard anybody talk to us as if they knew how to treat epilepsy.
Kelly Cervantes:
Now, had anyone said the word epilepsy to you at this point?
Kay Hanley:
No. No. Still to this point, no one had said epilepsy, it’s a seizure disorder. It’s a this, it’s a that. So we’ve now wasted six, seven years of not treating our child for epilepsy, not researching epilepsy, because I don’t want it to be epilepsy. So anything that means it’s not, I’m going to believe. And no, Dr. Holder was the first person to say epilepsy.
Kelly Cervantes:
Wow. It makes such a huge difference when you have the accurate diagnosis for what you’re supposed to be treating. Now I also know that Dr. Holder is an epileptologist.
Kay Hanley:
She is. And that’s unusual.
Kelly Cervantes:
And that’s a huge difference as well. And I said this so many times on this podcast, but I will say it again and again and again, every epileptologist is a neurologist, but not every neurologist is an epileptologist. And that distinction is incredibly important when you have a child who has refractory epilepsy, who is failing medications, who can’t get their seizures under control, you have to see that epileptologist.
Kay Hanley:
You have to. And no one ever told us that that was a thing.
Brandon:
Hi, this is Brandon from CURE Epilepsy. Have you or a loved one been recently diagnosed with epilepsy? Are you looking for more information about epilepsy and available treatment options? Go to cureepilepsy.org/for-patients to get resources and information about epilepsy. Now, back to Seizing Life.
Kelly Cervantes:
So once you found the right doctor-
Kay Hanley:
Yes.
Kelly Cervantes:
… once you were able to get the proper diagnosis and start on a treatment plan, how was Zoe’s progress from there with her seizures?
Kay Hanley:
Well, the first thing she did was called for the weekend MRI-
Kelly Cervantes:
The EKG.
Kay Hanley:
… the EKG and… Right, the EKG.
Kelly Cervantes:
Has she had an EEG ever at this point or an MRI?
Kay Hanley:
No.
Kelly Cervantes:
There’s never been any like-
Kay Hanley:
No.
Kelly Cervantes:
… “I wonder why she’s having seizures.”
Kay Hanley:
No.
Kelly Cervantes:
“Let’s check and see if there’s something going on in her.” No, never.
Kay Hanley:
No.
Kelly Cervantes:
Wow. And you didn’t even know to ask for that because you…
Kay Hanley:
Because she’s seeing her pediatrician regularly. By the way-
Kelly Cervantes:
And the neurologist,
Kay Hanley:
… it’s going to resolve on its own in adolescence, so who cares? So Dr. Holder orders the 24… or it was like a… Whatever it was. It was like over a weekend where the first day they tapered her off of her medication and they did this bright lights in the eyes and to trigger the activity in the brain. And so we found out that she has two separate kinds of seizures. She’s got her absence seizures and she’s got tonic-clonic seizures. And so what ended up happening from that was Zoe got a VNS implant is like the pacemaker, but for the brain.
Kelly Cervantes:
Yeah. The vagus nerve stimulator. Yeah.
Kay Hanley:
And the vagus nerve stem. And that’s been good for her absence seizures. And-
Kelly Cervantes:
So VNS it attaches to the vagus nerve and then there has a little magnet that you can swipe when you feel a seizure coming on. And is that something that she can do on her own? She feels that coming on or is that something that you have to assist with?
Kay Hanley:
What will happen is with hers, it’s sensory. So the sensor-
Kelly Cervantes:
So it’s doing it on its own,
Kay Hanley:
Yeah, it’s doing its own. I mean, she does have a magnet where she can turn it on and off if she’s going to the airport and going through… She has to turn off the stim. But what happens is, so the stim senses the telltale signs of this particular kind of seizure, escalated heart rate, warm skin, and will zzz and disrupt the seizure before it happens. So it has been good for her absent seizures. Tonic-clonic does treat those, so… I’m sure you could, I’m sure there is a treatment with a stim for, but where the locations, it’s such a-
Kelly Cervantes:
It’s so complicated.
Kay Hanley:
It’s so complicated. And people don’t realize.
Kelly Cervantes:
No.
Kay Hanley:
And so if you’re a parent, one of the things that was so upsetting about this is, in retrospect, is just how isolated we were because even doctors… I mean, other parents don’t want to talk about it because they’re just like, “Oh, it’s so terrifying. Seizures. What is that? It seems so violent. It seems like death.”
Kelly Cervantes:
Well, and I think that there is, especially in our generation, I think that the younger generations are doing a much better job of living a more stigma-free life. But we were raised with epilepsy and it having this stigma because it is so misunderstood. And so there is this general idea of especially if you have a child that is otherwise neurotypical and is leading this more typical life to not talk about it because you don’t necessarily want it to affect them in their social or professional life. How were the seizures affecting Zoe’s life at school academically?
Kay Hanley:
Well, that’s a good question. No one’s ever asked me that. I mean, socially and academically, she did great. And she was actually very open about having, and the the tonic-clonic seizures that she had in adolescence were at school. So her-
Kelly Cervantes:
So she couldn’t exactly keep it quiet. Like, it was=
Kay Hanley:
No. And she’s very open. And we were open about it. We just didn’t know anything about it. And we couldn’t tell. So we only knew what we knew from either experience or from the information we were piecing together from this source and that source. And of course, when we started with Dr. Holder, that gave Zoe the confidence to say like, “I understand.” She felt like she had agency now and she was being treated. She was being acknowledged. Like, “What is happening to you is fucked up. This is not right. And you have been failed and we’re going to fix that.”
And Zoe was just like… This was like oxygen to her. I mean, to all of us. Like I said, all three of us, when she said that, all three of us just burst into tears because she was so right. And so we had a relationship with Dr. Holder and Dr. Holder’s staff, and she was being monitored. She got the VNS and she went to LAXA, which is an art school in Los Angeles. And she was a filmmaker, she went to the cinematic arts program and made films throughout her high school career. And then I think socially, she had to actually be careful with her classmates needed to know because they would be doing film shoots, which as you know, up all night, long hours,
Kelly Cervantes:
Yeah. Stressful, not a lot of sleep. It’s a hard career for people with epilepsy.
Kay Hanley:
And had to constantly be making sure that she had her medications with her, that she was managing her food and her sleep and her stress on her own. But her classmates knew what to do if she had a seizure. Everybody knew that that was possible. So she was really supported in a way that allowed her to pursue her interests.
Kelly Cervantes:
And I want to emphasize that piece as well in that. There are so many young people who are afraid to talk about this because they’re afraid of being different or being singled out in some way. But by sharing it, she was able to be supported. She was able to get the help that she needed so that she could still pursue her dreams, so that she could still live the life that she wanted to live. And she was only able to do that because she shared.
Kay Hanley:
Yes. And when you make yourself vulnerable or you just share like, “This is me being real right now.” And, “This is what you do if I have a seizure,” and you give everybody the information, everybody wants to rise to that challenge. And people are like, “Thank you for telling me that.” And then they have questions and that just creates connection, which is really just all any of us is looking for anyway, epileptic or not, we’re looking to connect. And when you share that you are a person who looks normal, but you have this, what we think of it a terrifying disease that you are clearly unafraid to share about. People really want to know more about that.
So she went off to college, she went north to college and she wanted to go into social work, and she worked actually for summer at the public defender’s office in LA. And she became just obsessed with the idea of helping kids that get stuck in the criminal justice system and-
Kelly Cervantes:
Oh, it’s Amazing.
Kay Hanley:
… and can’t get out with children and families. And so she went to school at Sonoma State up north, went away for college and managed-
Kelly Cervantes:
No. Was she still having-
Kay Hanley:
Oh, yeah.
Kelly Cervantes:
… seizures when she went away to college?
Kay Hanley:
Yup. But she was able to on her own, she knew to get sleep. She knew not to drink, to no go to the raging kegler and stay up all night and manage her medications, and just had a really supportive community up there. She got accommodations for college.
Kelly Cervantes:
Oh, that’s great.
Kay Hanley:
I forget. It’s called a four-a-one.
Kelly Cervantes:
Four-a-one. Yeah.
Kay Hanley:
Something like that.
Kelly Cervantes:
I want to give you kudos for a moment too, for parenting and raising this remarkable young woman who is out there telling people what she needs and asking for what she wants academically once she knew what she needed and requesting those accommodations in college. That’s amazing.
Kay Hanley:
Girl, I would love to take credit for this, but she is who she is. It almost has nothing to do with me. It’s all her. It’s senior year. She did a study abroad in Italy, and she has just lived her life.
Kelly Cervantes:
But she’s lived it responsibly. She’s managing her medications. She knows what her triggers are and within adolescent responsibility, but she’s like, she’s aware of what the risks are.
Kay Hanley:
She’s aware. And she now lives in Boston. We actually moved. I’m from Boston. We moved to LA when she was four, and I think she’s always had that. She and her cousin, my sister’s eldest daughter have been their whole lives. It’s like, “When we grow up, we’re going to move to Boston, get an apartment together.” And they did.
Kelly Cervantes:
And then they did.
Kay Hanley:
And they got an apartment together. And so she and Erin Eileen live in Boston together, and they have an apartment in Dorchester, which is right down the street from where I grew up. So I’m very proud that my daughter is a dot rat, and she lives her life. She has a full-time job, and she’s currently getting her master’s in social work.
Kelly Cervantes:
That’s incredible. And she’s still having seizures? Has she ever had periods of seizure freedom?
Kay Hanley:
No, she hasn’t, unfortunately.
Kelly Cervantes:
And I think that’s the other piece that so many people who receive an epilepsy diagnosis aren’t told is that one third of people don’t find seizure freedom. I think organizations like CURE Epilepsy, Joey’s Song, they are out here fighting for research for that funding for all of the patients because the medications have side effects regardless of whether they are… even if you can find that seizure freedom with the medications and the treatment, but it can be unnerving. It can be the anxiety that comes with not knowing when that next seizure is going to happen. And for all of those people that the one in 26, the one third of the one in 26, who can’t find that control, it doesn’t make for the easiest life.
Kay Hanley:
Well, because there’s always that baseline of anxiety, I think. I try to not contribute to it by… There are times when she will have a seizure, and I know that there have been behaviors on her part that have led to it, and it’s like you know better. I really try not to mom out on her too much because she knows. She knows what to do and what not to do. It’s like if you were out at the football game and you only got four hours of sleep, you’re going to have a seizure-y day. I am so sorry that we still call it that, but we don’t have.
Kelly Cervantes:
No, I know, but I think that… But here’s the thing-
Kay Hanley:
We didn’t know what it was.
Kelly Cervantes:
… I think that we come up with our own words and when you are dealing with a chronic illness like this, I think it’s you are grieving something and you need those little bits of dark humor, and I don’t fault that at all. I actually love it a little bit. Like you come up with your own ways, you’re like, “No, look, this is the cause and the after effect is you’re going to have a more seizure-y day if you don’t do what you need to do.”
Kay Hanley:
Yeah. What do you call it?
Kelly Cervantes:
No. No apologies necessary.
Kay Hanley:
Thank you.
Kelly Cervantes:
I think that that is… I love it. I’m just utterly impressed by Zoe. But I do want to switch gears for a minute because we are here at Joey’s Song in Madison, Wisconsin in January.
Kay Hanley:
My favorite.
Kelly Cervantes:
How did you get involved in Joey’s Song?
Kay Hanley:
Okay, so this is where the story becomes my story. One day in 2019, I was scrolling through Instagram, which I really don’t do very often. And my friend Chris Collingwood from Fountains of Wayne posted this thing about he was at in Madison, Wisconsin playing this concert with all of these people like Freddie Johnson and Butch Vig. And I was just like, “What is this?” And then he mentioned Joey’s Song finding a cure for epilepsy. And I was like, “What?” So I’m just in shock looking at this.
Okay, so there’s a charity, there’s a concert with all my favorite people in the Midwest that is working to find a cure for epilepsy? And they’re, “What?” It was just like my whole world was just turned upside down because I’ve never heard of this. And so of course, I’m like, “Chris, what is this? How do I get involved? And Mike Gamal, the head of Joey’s Song sees this, and I’m not kidding. Two seconds later, he was like, “I’ll tell you how.” And the next thing you know, I’m on a Zoom call with him and I’m coming in January. The pandemic hit and we couldn’t do it. Or no, you know what, it was the show in 2020 that they had just done. That’s what happened. And then the world shut down.
Kelly Cervantes:
And then they couldn’t do it in ’21. Yeah.
Kay Hanley:
Yeah. So I had agreed to do it. I had already asked Tanya and Gail, I mean, I knew I could get Tanya and Gail to come with me, and we finally got to do it in 2022. Now, there’s just a huge presence of women in Joey’s Song.
Kelly Cervantes:
Last night was remarkable. You have Belly, you have Letters to Cleo, The Bengals.
Kay Hanley:
The Bengals reunited.
Kelly Cervantes:
Oh my gosh.
Kay Hanley:
And then can we just talk about Nikki Monagher from Silversun Pickups, the bass player with match… She matches her shoes to her. She had that Red Falcon and the Dorothy sparkle red shoe. I can’t, she’s so great. And she’s just a monster on bass.
Kelly Cervantes:
Yeah, no. There was some major feminine power on that stage.
Kay Hanley:
So now they had the Know-It-All-Boyfriends. Now we have the Know-It-All Girlfriends, it’s a battle of the bands. We won the championship belt last year. We are prepared to crush them again this year.
Kelly Cervantes:
I cannot wait to watch it.
Kay Hanley:
Just backing up a little bit, so when I got involved in Joey’s Song, the first year I was here, I was like, “Oh my God, everyone’s just talking about epilepsy. It’s just a regular thing.” No one’s like, “What is it?” Or people are talking about research, but regular people and just a lot of them. Now in the meantime, my ex-husband has married a woman named Toma who developed seizures in adulthood. And so she now is part of our family, and she and Zoe can really connect
Kelly Cervantes:
Because they both have epilepsy.
Kay Hanley:
Right. And so this is amazing. She has a different kind of seizure disorder from Zoe.
Kelly Cervantes:
Absolutely.
Kay Hanley:
It’s different, but no one knows that why they’re different and they’re different medications. And so when I get back from this thing the first year to Toma and Zoe, I was like, “You guys, you’re not going to believe this. And there’s a whole world out there of people talking about epilepsy.” And so three years into it, Toma finally got to come last night, and she’s here the whole weekend. And she’s just like, “It’s so moving to me to give her that.” Because this is what Joey’s Song gave me is that you’re not alone anymore. We’re here. We’re in this.
Kelly Cervantes:
And to be able to do that, I think that there are only so many experiences I think that unite us in humanity. And music is one of the biggest pieces of that, like this uniting force. So to be able to come together around a cause like epilepsy, to raise money for epilepsy research while embracing and celebrating music and amazing musicians. And I have to say from the audience, it’s just amazing to watch all of you up on that stage, have so much fun and play together. Because I know that you don’t typically ever play together and you’re putting together these bands, and it’s a really remarkable weekend. And I just thank you for helping raise more awareness and raise the status, raise money, and for sharing Zoe’s story with us, because you’ve got quite the remarkable family there.
Kay Hanley:
Thank you so much for having me and talking to me today. And thank you to Adelaide for having such an impact on the world and giving you to us. It’s amazing.
Kelly Cervantes:
Thank you.
John Coswill is the former drummer for the popular hit making 1960s family band, The Coswills. John also spent more than 20 years performing with The Beach Boys. He’s currently on tour as the drummer for the Smithereens and will release an album with his wife Vicki Peterson of The Bengals in the coming year.
John spoke with us about growing up with epilepsy while maintaining a hectic touring schedule with the Cowsills and how he recently became part of the Joey’s Song family.
John, thank you so much for joining us today. I’m so excited to have this conversation.
John Cowsill:
It is my pleasure. And I’m looking forward to the conversation we’re probably going to have.
Kelly Cervantes:
To kick things off, why don’t you tell us about how epilepsy first entered your life?
John Cowsill:
Oh, wow. It first entered my personal life at two years old.
Kelly Cervantes:
Oh.
John Cowsill:
Yeah. The story goes because I was two that I was playing on a set of bunk beds, which I know very well, the bunk beds. And the way the room was situated, there was a dresser right this far from the back of the bed that I would crawl up to. And I fell off the bed and I hit every knob on my head coming down backwards. And they were those… I don’t need to get so graphic, but I remembered the dresser. And when my auntie told me that, I hit over one of those knobs. So my skull cracked open. They thought I was dead and was in the hospital for a while, I think. And I had acquired epilepsy. I started having seizures. I’m only told that early parts of that, but I remember them. And I remember being five and having it because those aren’t some of my first memories, and I just didn’t know what it was, but…
Kelly Cervantes:
Do you know what kind of seizures that they were?
John Cowsill:
Grand mal.
Kelly Cervantes:
Grand. Yeah.
John Cowsill:
Yeah. I was a kid.
Kelly Cervantes:
Wow.
John Cowsill:
Yeah. So just had to learn to deal with that. I’m a Navy brat, so the Naval Hospital took care of me, and I remember that very well. Every month I’d go to Boston and I’d have an EEG, you know? And back then they didn’t have the needles that they put in your head. It was just the peanut butter. They called it peanut butter. And I was a kid, and I didn’t mind it, but taking it out was a nightmare. And then I remember the first time I saw the needles for the EEG, I think it was eight, and I remember they had just started that. And I was like, “No.” I went into hysterics, said, you’re not putting those in my head. I was so afraid.
Kelly Cervantes:
Oh my gosh. Now, did they put you on any medication to help treat the seizures?
John Cowsill:
Yeah, it was on phenobarbital four times a day.
Kelly Cervantes:
Oh, wow. And did that help control the seizures at all?
John Cowsill:
I guess so. It must have, they wouldn’t have kept me on it, but I still remember having seizures, and I remember being at school and having them in the playground and not liking that at all-
Kelly Cervantes:
No, of course not.
John Cowsill:
… because I wake up soaking wet, just kind of crazy stuff. But I knew that my teachers knew that I had it, but I wasn’t allowed to tell anybody that I was epileptic.
Kelly Cervantes:
And why?
John Cowsill:
My parents told me, don’t tell anybody you’re epileptic because I was in a family band called The Coswill that were just starting to become famous. I was seven. I was playing bars, four sets a night. They just didn’t want that out there. And when we started becoming famous, they had all these other doctors coming around and checking you and stuff, and they said, “Don’t say anything to that doctor. Don’t even tell them.” Because all my records were in the naval hospital. No civilian hospital could have gotten them. So nobody knew I was epileptic.
Kelly Cervantes:
Oh my gosh.
John Cowsill:
And that went on for a long time. I’ve fallen off stages and fell backwards because it comes on and you can’t scream for help because it starts with a faint and you just-
Kelly Cervantes:
I was going to say, do you have any sort of aura or something before?
John Cowsill:
Oh my gosh, man, I don’t remember just trying to crawl out of a hole every time I came out of a seizure. It’s like crawling out of anesthesia is what it is.
Kelly Cervantes:
Yeah. Yeah . But did you ever know before? Was there a scent or a feeling or something?
John Cowsill:
Was clicking me and I knew it was happening, but by that time, it’s taken your voice away, so we can’t yell for help.
Kelly Cervantes:
Now, you mentioned that you were in a family band. This was not a small, this is what the Partridge family was later based on.
John Cowsill:
It was based on family.
Kelly Cervantes:
This is no small thing. As you’re saying this, of course, the first thing that comes to my head is that now we know a huge trigger for seizures is A, stress, and B, sleep deprivation as you’re performing in bars every night. These are-
John Cowsill:
Now I’m on phenobarbital four times a day. My report cards in between first and fourth grade where John could do much better in school if he stayed awake. And now my teachers thought that was because of the phenobarbital, but I’m sure it was partially that. But it was also because I was out till 2:00 in the morning, but it was only on the weekends and Sundays we shut it down. And I wasn’t a stressed kid. Well, maybe I was because I was always afraid I’m about to get in trouble. My dad was really scary person.
Kelly Cervantes:
So you weren’t allowed to tell anybody. Did you have friends in school that you shared any of those friends?
John Cowsill:
Oh, yeah. I had other epileptic friends.
Kelly Cervantes:
Oh, you did?
John Cowsill:
I did. I had. Debbie McGann was one of my friends, and she babysat me and she was epileptic. So we had bond time. We were epileptic, and I didn’t have my medication. She was taking the same thing. And back then we didn’t know how many epilepsies there were. We didn’t know about any of them. And all of a sudden, research is an amazing thing, and it will continue to be amazing thing. And that’s partially what raising the money for is and maybe find a cure, which would just be phenomenal.
Kelly Cervantes:
Yeah, it would be everything, I think for both of us. Now, do you still have epilepsy?
John Cowsill:
No.
Kelly Cervantes:
Do you have still seizures to this day?
John Cowsill:
No. I outgrew it. And I think my last seizure, I was in my 20s that I can remember that I will call a seizure. It wasn’t typical seizure, but I remember that. And I hadn’t had anything for several years before, and I just remember the length of time between them and they had switched my medication and I cannot remember what it was, but I just on my own, stopped taking it.
Kelly Cervantes:
That’s not dangerous at all.
John Cowsill:
It might’ve been, and I don’t condone this to anybody out there, but after I got about 28, I hadn’t had a seizure in years, and I just was a cocky young man. And so forget this. So I just stopped taking everything my early to mid-20s. I can’t remember exactly when I stopped. I just didn’t go back, and I never got a certified, “Okay, you’re out of the woods, you’re healed,” kind of. I never went back to the doctor to find out, and I’ve never had a seizure since.
Kelly Cervantes:
And have you had an MRI? Because it sounds like the onset of the seizures was a traumatic brain injury, post-traumatic epilepsy.
John Cowsill:
That’s what it was. I’m a type of strobe-like guy. I still close my eyes around strobe like on stage.
Kelly Cervantes:
Oh, interesting. Okay.
John Cowsill:
Yeah. And I always remember that growing up. They’re always testing you with the strobes. It’s weird. Why you having a need to-
Kelly Cervantes:
It’s interesting how those triggers will stay with you. And I think you bring up, just in talking to you, you can see how there’s trauma there associated with it-
John Cowsill:
Absolutely.
Kelly Cervantes:
… from your childhood and all of these different and the way that it has impacted you. And I think that that if people always like to say that children are resilient. And I always like to remind them that children become adults who are a lot less resilient.
John Cowsill:
With scars. And hopefully you can recognize them so you can deal with them. But some people don’t recognize that they have that, and that’s a sad thing, because now they’re all messed up and stressed out and anxiety-ridden and don’t know why. I don’t know.
Kelly Cervantes:
Absolutely.
John Cowsill:
Everybody’s wired differently to accept what it is, and sometimes you need some help.
Kelly Cervantes:
Yeah, absolutely. Now, tell us how you became involved with Joey’s Song.
John Cowsill:
I was sitting in New York. I had just stopped working for The Beach Boys and I was late. We lived in a studio apartment in Bay Ridge, Brooklyn, which was wonderful because we lived in a very palatial place in Malibu Canyon. And Vicki and I have not spent that much time together married, because I was always on the road with The Beach Boys 80% of the year. She was on the road to The Bengals for the first part, first half of our marriage. And then they slowed down.
And it wasn’t until the pandemic hit that we spent a year and three months nonstop together, and we had the best time. In fact, I watched Hamilton live on… I bought a movie screen for outdoors because I couldn’t find a big enough TV screen for inside. So we bought a movie screen and we put lounges out on our deck, and we watched movies every night through the pandemic. If it got cold, we got down stuff on and we still watched it outside.
Kelly Cervantes:
I love that.
John Cowsill:
It was nice. So I’m in New York in a studio apartment, and I’m laying in the bed like Willy Wonka’s grandparents, which is in the middle of the living room. You can’t help it. You’re in a studio. And Vicki’s talking with Mike because he’s bringing on her because her sister Debbie was doing this and they’re talking. And then I was on the bed doing a crossword puzzle and she says, “Hang on, I’ll ask John.” And she says, “Hey, can Butch Vig have your phone number?
Kelly Cervantes:
MBD.
John Cowsill:
To a drummer? She says that to a drummer. And I went, “Wait a second. Wait a second. What did you just say to me?” He says, “Butch Vig asked for your phone number.” I said, “Give it to him.” And he called me up and he says, “I saw your name. I want to get you on the Joey side.” I wasn’t even coming to the show, but him and Mike discussed it. And then I came on board and they didn’t know I was in epileptic at all in my lifetime. And so I told Mike that. He said, you are so coming. You’re coming to this.
And that’s how I ended up coming here. And I was here last year, and it just was the best time and the best people who put it on, the best people who come perform and Madison Wisconsin hosting this thing. I know other places have hosted them in the past. Just people are opening your doors and so lovely and sweet and kind and giving. And with all the bad stuff that’s in the world, there’s so much good still. It’s just an amazing thing. And I live for that.
Kelly Cervantes:
Yeah, it’s amazing
John Cowsill:
For those good people and good things, they are here. It’s not all dark. And that’s how I ended up at Joey’s Song, and I’ll come every time they ask me to.
Kelly Cervantes:
What part do you enjoy most about performing at this festival?
John Cowsill:
Oh, it’s not the performing, that’s the nothing part, but that’s fun. I like performing, but I just like hanging out with everybody and meeting the other musicians and artists. And it’s really community theater on a big level for me. And I’ve only done that a couple of times, and that was some of the most fun I had, the most work for a short meal. But it’s just, it’s the bonding and fraternizing and meeting people who do what you do, who you never run into. Because when we’re on tour, we’re the only entity out there unless you’re playing a festival. So festivals, you meet other musicians, but never on your own gigs. So people always say, “Oh, you must know so many drummers.” I said, “Nope. I’m usually the only one on the gig to play drums.”
Kelly Cervantes:
But it also, I’m sure it means something a little extra to be a part of something that’s giving back to something-
John Cowsill:
Oh my gosh, it’s-
Kelly Cervantes:
… that affected your childhood so much?
John Cowsill:
Yeah. Well, that was the incentive. And then you get here and you meet all these people who are giving on behalf of that.
Kelly Cervantes:
Yeah.
John Cowsill:
And Mike’s story, it’ll bring anybody here like yours, just like yours.
Kelly Cervantes:
John, we are so grateful that you and your wife and all of these musicians are here to share your talent, to share your art, to give us these nights of joy, to give us these moments and all to support epilepsy research, to support all of the patients and families out there that need it so much, and to do it in such a joyful way. It’s a pretty special weekend, and I’m so grateful-
John Cowsill:
It’s a special weekend.
Kelly Cervantes:
… to you for being here and for sharing your story with us because it’s much easier for me or for Mike to talk about our children and our experience with our children. But I think that it is another level of importance and special when someone with epilepsy can speak about it directly, because everything that you have a accomplished in your life, given that you experienced seizures, given that you had epilepsy, given that you were on all of these medications and fought with the side effects and struggled in school, and here you are today, you have built an incredibly successful music career. And I think that that is so important for the kids out there, for the teens, the 20-somethings, the 40, 50s to know that a successful life, a happy joy-filled life is still a possibility with this diagnosis.
John Cowsill:
We’re all waiting for you. It’s just waiting for you.
Kelly Cervantes:
So thank you for being willing to share your story.
John Cowsill:
Well, it’s a humbling experience, and I thank you for the same thing.
Kelly Cervantes:
Much appreciated.
Thank you to Kay and John for taking time to speak with us during the Freezing Man Festival weekend. And a big shout-out to all of the amazing artists and crew members who volunteered their time and talents to help Joey’s Song raise money for epilepsy research and awareness. CURE Epilepsy is proud to be the research partner of Joey’s Song, having received more than a half a million dollars in donations from this amazing event. If you would like to support CURE Epilepsy’s mission to fund breakthrough research that will transform the lives of people living with epilepsy, please visit cureepilepsy.org/donate. Thank you.
Legal Disclaimer:
The opinions expressed in this podcast do not necessarily reflect the views of CURE Epilepsy. The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical conditions be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual specific health situation.