Epilepsy and Loving your Diagnosis with Lainie Chait (EP#140)

by Alexandra Anttilla November 03, 2021 43 mins read

Lainie Chait podcast

 

Today on the podcast, we have the performer stand-up comedian, author, and Love Your Diagnosis podcaster Lainie Chait (more famously known as Electro Girl) sharing her incredible story, wisdom, and revelations from more than 20 years living symbiotically with Epilepsy. Lainie's journey with what they call 'the invisible illness' (Epilepsy) is a testimony to intuitive holistic healing and the power of transmuting trauma into something beautiful. Diagnosed with Epilepsy at the age of 19, Lainie suddenly found herself in the depths of managing an illness that her teenage self wasn't ready to accept. What followed; An integrative journey spanning over two decades of denial, rebellion, acceptance, and the birthing of a phenomenal woman dedicated to inspiring others. Lainie has written and self-published a book (Electro Girl), performed a one-woman stage show, is a stand-up comedian, and now hosts a podcast dedicated to sharing the stories of people like herself, who have defied the odds of their diagnosis. There is no doubt that Lainie has taken the road less traveled with her approach to living with Epilepsy. Not willing to accept a lifetime of prescribed pharmaceutical medication, she thrust herself into the throes of trauma healing, alternative medicine, research, visceral guidance, and lots of trial and error. Almost 300 tonic clonic, grand mal seizures (aka the big ones) later, she is here with a message for anyone who's had a dire diagnosis to jump in the driver's seat, direct their journey, and believe in the power to heal; However that may look. This is a truly inspiring episode laced with comedic cure and a potent message of why we need to handle our brain, nervous system, and ourselves with care. Tune in.

 

 

"You've got a choice when you walk out of that doctor's office; Are you going to let someone else take charge of your life? Or are you going to be in the driver's seat? If you have to use the medicine, great, but I encourage people through my experience and other people's stories to be back in the driver's seat of this. And research, that's been the message so far from everyone. At the end of each podcast, I ask everyone to say a little tip for someone going through it. And it's always research, go and get second opinions and be in it. Be right in it, right in it. Don't let anyone control how you look at your health and how you heal".

 

- Lainie Chait

 

 

Mason and Lainie discuss:

 

  • Trauma and Epilepsy.
  • Understanding Epilepsy.
  • What triggers seizures?
  • Healing through comedy.
  • Over-prescribed pharmaceuticals.
  • Allopathic vs holistic healing approach.
  • Lainie's healing protocols and supplements. 
  • Lainie's diet; What she avoids and what helps. 
  • Taking care of the brain and nervous system.

 

Who is Lainie Chait? 

Lainie Chait is an author, performer, podcaster, and stand-up comedian. Lainie is a big advocate for people treating themselves holistically, and exploring healing modalities outside of allopathic diagnosis/treatment. In 2017 Lainie self-published her autobiography, ‘Electro Girl’, a story of her journey living a symbiotic existence with Epilepsy for 16 years. In 2021 Lainie started a podcast called Love your Diagnosis, which takes a weekly look into the lives of people who have been diagnosed with a condition/illness. The interviews find a flow and dialogue around the choices and changes people start to make in their lives when they learn that they have to live with dis-ease, partially brought about by their choices. Lainie believes a diagnosis can be seen as a gift if you look at it as a second chance to get to know and treat yourself in a more loving way. If you would like to connect or work with Lainie, please explore the links below. 

 

CLICK HERE TO LISTEN ON APPLE PODCAST 

 

Resources:

Electro Girl Book
Electro Girl website
Lainie Chait Twitter
Lainie Chait Linkedin
Love Your Diagnosis Podcast

 

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Check Out The Transcript Here:

 

Mason: (00:00)

Hey, Lainie.

 

Lainie Chait: (00:01)

Hi, Mason.

 

Mason: (00:02)

We're back.

 

Lainie Chait: (00:02)

We are, we are.

 

Mason: (00:04)

We tried again, but it was retrograding too hard that day.

 

Lainie Chait: (00:08)

For both of us. My little thing that I'm going to bring out, malfunctioned, but I fixed that because of retrograde, which is good.

 

Mason: (00:15)

I had, I think, for the first time ever not... I hit record, and then I'm going to blame the laptop and the fact that that just didn't record. All right, but good. We're off and running again.

 

Lainie Chait: (00:27)

We are.

 

Mason: (00:29)

You're just an interesting person. I mean, everyone's had a little bit of an intro, but do you want to just get everyone caught up on who you are and what you're working on?

 

Lainie Chait: (00:40)

This book is part of a bigger... Well, this was actually the start of it. I wrote this book, because I was diagnosed with epilepsy at 19, and I just wasn't prepared to accept that I had it. I was just not interested in knowing that my brain was going to work against me to live a normal life. Yeah? This is like a dialogue around my journey and of basically how I came to deny it, rebel against it, accept it, and then use supplementation and even products of yours, which is why I want to... been so interested to talk to you, about how to control and manage the seizures and the brain farts with a holistic approach, not just throwing pills into my face.

 

Mason: (01:32)

How long did you get swept up in the, this is your new normal?

 

Lainie Chait: (01:37)

I hid it for the first four years, in my teenage years. I was too afraid to tell anyone about it. At that stage, I had the seizures that were just kind of jerking, and just like jerks, and maybe hiccups and things like that, but I hadn't had any tonic-clonic seizures, the big fall to the ground seizures. The scary ones that people are often scared about. It was only when I started drinking and dating, and introducing teenage stuff into your life that you're just not prepared for really, that the big seizures started to happen. At 19, my mum saw that going on and then it was seven years of doctors.

 

Mason: (02:24)

What's the... Okay, because you call it, it's like the silent...

 

Lainie Chait: (02:27)

The silent disease, I think they call it.

 

Mason: (02:29)

Disease. Yeah. I mean, I was like is disease even there, but yeah, that's I guess, kind of appropriate based on the west.

 

Lainie Chait: (02:34)

Oh, no. Invisible illness.

 

Mason: (02:35)

Yeah. The invisible illness. Yeah. It's a little bit more gentle.

 

Lainie Chait: (02:38)

Yeah, it is. Mm-hmm (affirmative).

 

Mason: (02:43)

You were bringing it up in reading your email. I was like, "Yeah," and I know maybe a couple of people that have told me, in the past, how they dealt with their epilepsy, but just the walking around while you have a sign, that did like you, that you have a sign on telling people, any point you're going to be going into a fit. You can't do that, so how is your life get affected?

 

Lainie Chait: (03:05)

Well, I guess for me, luckily, because there's 40 different types of epilepsy, right? Which I didn't know that at the time. I just thought there was the small ones called absence seizures, where your brain just shuts down for a second, and you have like a minute, maybe two minutes where you're just out, but you're not jerking or you don't drop or anything like that. They're called absence seizures. I did have a few of them when I was younger, but for me, it's all been about the grand mal, the tonic-clonic ones.

 

Lainie Chait: (03:36)

I saw my first seizure in hospital when they did all the tests and I had to stay inside and get my head all... They had a big turban with EEG and I was hooked up to a machine, so I was about 19 when that happened, and I saw and heard my first seizure from someone else in hospital doing the same thing. From that moment on my ego and myself went, "Oh, there's no way, there is absolutely no way I'm going to let anyone see me like this, no way. It's too scary.

 

Mason: (04:07)

So you just stopped heading out.

 

Lainie Chait: (04:09)

No, I just hid it. If I felt like I was going to have one I'd fuck off and do it alone, Mm-hmm (affirmative). Or, risking death. My ego was stronger than my logic to get help or tell people, or... Yeah, and the fact that I kind of intuitively knew that it was an emotional... That I'd created it. I know that's weird to say, because it developed at 14 when my parents got divorced, it's not really in my family history, and the triggers that still align now are still about stuff to do with abandonment, stuff like that.

 

Lainie Chait: (04:55)

If I'm in certain situations that trigger me, there's still wired in there somewhere, even though as an adult I've totally dealt with all of that logically and done cathartic everything's, but somewhere in the wiring, there's still that little faded memory of something to do with what triggers them. That I still find really hard to break. Yeah. It's really interesting.

 

Mason: (05:25)

That still set you off?

 

Lainie Chait: (05:27)

Yeah. But it's not everything, it's just certain things. Like flashing lights, that's not my type of epilepsy.

 

Mason: (05:34)

Yeah, right.

 

Lainie Chait: (05:35)

I myth bust in this as well. I do comedy about epilepsy. I know you do comedy. One of the reasons I started to do stand up was that I wanted to do a 45 minute show on making epilepsy funny, because when you're living it, that was the way that I found that I could get over it. Understand it, break through it, because otherwise it will destroy you actually. It's a pretty shit condition.

 

Mason: (06:07)

Did you, within yourself, you made it funny or did you make it like, "If I'm going to embrace it, so it's not embarrassing. I'm going to like tell everyone, in a comedic way, that I'm dealing with this"?

 

Lainie Chait: (06:19)

Okay. Here's a joke I made up. "Why did the epileptic chicken cross the road?"

 

Mason: (06:25)

It's already funny, yeah. Why?

 

Lainie Chait: (06:27)

"Because it couldn't fit on the sidewalk." I mean, it's not funny, but it's funny. Anyway, therefore I think that's it. Yeah. Mm-hmm (affirmative).

 

Mason: (06:40)

Do other people that have the epilepsy get offended by you taking the piss out of it, or have you got a hall pass?

 

Lainie Chait: (06:46)

I think, in this world of PC, way too PC, I've definitely got a hall pass. I got a hall pass as a comedian, to being a woman, so I can say anything I like about being a woman, epilepsy, and being Jewish.

 

Mason: (07:00)

Are you Jewish as well?

 

Lainie Chait: (07:01)

Yeah.

 

Mason: (07:02)

Gosh. Yeah.

 

Lainie Chait: (07:02)

I've got passes in comedy that...

 

Mason: (07:04)

It's like what Lee, the dentist in Seinfeld, going for complete immunity, complete comedy immunity. Yeah. And becoming a Jew was the last one, I think, for him.

 

Lainie Chait: (07:18)

That's right. I remember that. I remember that. Yeah. I don't know. I think the hall pass is out of respect, because I'm allowing people to understand it rather than be scared of it. The jokes that I make about it is more about looking at it from a perspective of, "Oh, I don't need to be scared of that then. Okay." All the things, that you can swallow, that there's a stigma or a myth that you can swallow your tongue, bring light to that, because it's so not... That's just impossible. To swallow a tongue. It's connected. The myth is to swallow the tongue, but actually, because it falls back into the mouth it blocks the airways and that's when the trouble can happen, so just will, as a muscle that's limp, block the airway.

 

Mason: (08:13)

What about treatment-wise? What were you told the rest of your life was going to look like after you got diagnosed?

 

Lainie Chait: (08:20)

Medication for ever. No late nights, no parties.

 

Mason: (08:27)

Is this at 14?

 

Lainie Chait: (08:30)

No, I hid it.

 

Mason: (08:32)

You hid it from like everyone even-

 

Lainie Chait: (08:33)

Everyone.

 

Mason: (08:33)

Yeah, right, medical profession.

 

Lainie Chait: (08:35)

Everyone. It was my little dirty little secret, but I didn't know what was going on. It's in the book though.

 

Mason: (08:43)

Yeah, okay.

 

Lainie Chait: (08:43)

Very interesting.

 

Mason: (08:50)

Everyone listening, we've gone live on Instagram as well. The book we're referring to, I know I've already mentioned it, but it's Electro Girl, but yeah, if you hear us talking to the viewers.

 

Lainie Chait: (09:01)

Yes. We've got two sides. Yeah. It was the doctors. It was lots of tests all the time. Yeah, it was pretty grim, and I guess being quite a stubborn personality in myself, when I was diagnosed, I just kind of went, "Oh, I'm caught, I'm caught. I've got no choice. I'll just sort of bend over for a little bit," and then the medicine, it just kept being thrown one on top of the other, because one wasn't enough and then another wasn't enough, and so there was a cocktail. That was creating all these co-morbidities of depression and I'm like, "Fuck, do I really actually want to live like this when I think that it's emotional?" So I brought that to the doctor's attention and they're like, "Nah, it's not. It's something in your brain."

 

Mason: (09:51)

Do doctors know what emotions are?

 

Lainie Chait: (09:53)

I don't know. Any doctors out there? Just text in.

 

Mason: (09:59)

But, I mean, that's a common theme. I think everyone listening to this, not just on this podcast, probably everything that everyone's listening to, just realising there's that crusty institution that's so good at particular things, but then stepping outside and acknowledging, even when... I don't know whether you're an example of this, you may just say you go back to that doctor and say, "Hey, dead set, look at this. This happens, epilepsy happens, because of emotions, and then I deal with those emotions down the track, and I see symptomatology go down." I'm just kind of like putting words in your mouth, and I'll let you tell the story of what actually happened.

 

Mason: (10:33)

Or it's the same, I've got friends with cancer all of a sudden coming back and the tumor is halved in size and they go, "Oh gosh, whatever you're doing," it's the same thing, "whatever you're doing, keep on doing it." "Do you want to know what's happening?" "No, absolutely not. You're an outlier. You're a bloody miracle, but I don't want to tell anyone about that miracle, because..." I don't know. It's one problem.

 

Lainie Chait: (10:56)

Well, it's about trials you see, and in a world of being sued, they have got the blinkers on a little bit. I mean the involvement of CBD, maybe some doctors have gone, "Oh, okay. I'll just, maybe 45 degree my blinkers a little bit," because there is some evidence around that, but even with what you do and making claims, and I worked for the Happy Herb Company for many, many years and I mean, it's all just about claims, and what you can and can't say, and what you can and can't... Yeah. Claim that works or doesn't work, it's so individual. Yeah. My doctor still kind of says to me that whatever I'm doing, it's sort of like, he humours me. It's like "Great, great. That's really good." Yeah, exactly the same sort of thing, but he won't kind of give it a lot of merit.

 

Mason: (11:55)

I guess, it's not his problem either. He works within an institution that's effective in some capacity and that's like all doctors. They're not revolutionaries. If you're revolutionary, you don't go into one of the most stagnant institutions that you can possibly go into.

 

Lainie Chait: (12:13)

Yeah.

 

Mason: (12:13)

You just hope sometimes they're not bought into the religion of it, and they're at least realise, "Yeah, this is the way we do things over here, and I hope that everyone else has the capacity to go and evolve along with us, for our collective intention of keeping humanity healthy."

 

Lainie Chait: (12:28)

That's right. I suppose they're very, fix the symptom, and alternative medicine are, look at where the problem's coming from. That's kind of, intuitively, what I decided, that that's the approach I wanted to take. Seven years I gave it a go and I became a zombie, and started smoking a lot of gunjah to balance out the fact that I felt like a zombie and that just made me more zombie. At 28, I just woke up and went, "Oh, fuck I can't do this anymore at all," so I did that classic, stereotypical, Saturn return. Quit the job, left the boyfriend, bought a Kombi, drove up to Nimbin.

 

Mason: (13:09)

Mm-hmm (affirmative). Nice. That's fitting.

 

Lainie Chait: (13:12)

Yes. You've been wanting to say that, haven't you?

 

Mason: (13:17)

Oh, that was 10 seconds ago, I was like, "All right, all right, I've got one."

 

Lainie Chait: (13:21)

You've been dying to say it.

 

Mason: (13:22)

Mm-hmm (affirmative).

 

Lainie Chait: (13:25)

Yeah, I just thought there's got to be people that understand that there's another way to do this, and there was. Not long after that, I met Ray and Eliza from Happy Herbs, and it was that fate thing. Yeah. Oh, look, there's just so many incarnations of it, because I was then so committed and so obsessed with healing it. Curing it though, instead of... I went all the way over the other side. I went, "All right, fuck you medicine. I'm going to go over here and completely just immerse myself in everything, and I want to cure this. I want to be the first girl to cure her epilepsy," because I kept using that word cure. Cure, cure, and that was a big mistake.

 

Mason: (14:15)

Was the mistake... I mean, because there is an initiation period where the way you approach it, if you come from a colonised Western medical mind set, you have to use the word cure to even get... but then I think we see it a lot in the health scene as people just hang on too long in being a patient. You're trying to work with the natural, but with the kinds of conversation of the synthetic Western model, and you hang in there too long. Is that what you mean?

 

Lainie Chait: (14:47)

Yeah. I hung in there a bit, but I think the dialogue should have been more about how can I treat and manage this, because there is a part of my brain that has got a low seizure threshold. Yeah?

 

Mason: (14:58)

Mm-hmm (affirmative).

 

Lainie Chait: (14:58)

That part is the part of science, and genetics and chemistry that I'll never cure. Yeah?

 

Mason: (15:07)

That was being off in never-never land a little too much thinking, "All that data doesn't apply to me." That's how I was with my mum when my mum had an aneurysm. It ripped me down emotionally, because I was like, "Nah, we're going to defy the odds here," and you probably did, and we did as well, but when you're that out of reality, and pie in the sky, and looking for miracles, it just doesn't help that much, does it?

 

Lainie Chait: (15:33)

Yeah. Well, I would pay someone to heal me. That was the other thing, I'd be like, "Here, take the money that I really should be paying rent for or buying some very healthy food for. Take this because wow, I've read your thing and it said, 'you can perform miracles,'" so I would pay, just a shit tonne of healers, of every different modality. Moxa sticks. I mean, who the fuck can cure epilepsy with a moxa stick? Tell me.

 

Mason: (16:02)

It depends on whether they've looked at the classics. The classic Chinese texts maybe have some secret little formula there.

 

Lainie Chait: (16:08)

Well, it didn't frigging work.

 

Mason: (16:10)

No, I imagine it wouldn't. It doesn't feel like it's in the ballpark of moxa.

 

Lainie Chait: (16:17)

But I was a little bit obsessed to do it that way, so I went all the way over that side and things were working, but there's still the underlying problem, and the story that was in my brain, and the neural pathways that were leading to the seizures were still in place. You can't outsource that. You can't outsource how your brain is wired. That's the work you have to do yourself, and that's what I didn't realise in my twenties and early thirties, is that I actually had to go deep into the ugliness of when they started, why they started. I created a journal for about four months in my late twenties to document everything around what was happening.

 

Lainie Chait: (17:13)

I started to go, "All right, maybe moxa sticks, won't cure it. Let's see what actually else is going on here," so I wrote down what I ate, what I drank, who I'd slept with. Did I fight with anyone? What supplements was I taking? Everything, and then got a list of actually, "Oh, there's a bit of a pattern occurring here," and then started to really appreciate what I was bringing to the table. How I was making myself an epileptic. How I had created this, and so I've been on a journey ever since to just go from total denial and rebellion to now preaching a message of personal responsibility and what you bring to your conditions. That's why I wrote that. You don't have to have epilepsy to get messages from this. It's actually quite across the board, but it does, obviously, specify my journey with epilepsy.

 

Mason: (18:18)

That personal responsibility one, and I think that freaks people out. We just came out with a little... We're testing out having a line of apparel called Sovereign, and essentially exploring that. I think there's a lot of people looking at the common law kind of sovereignty, kind of side of things that's been hijacked over there versus the sovereignty of your greatest capacity to take on responsibility for your reality. I think people get confused, because just if you start taking on extreme personal responsibility, especially in a healing sense, does that mean you don't go and interact with particular institutions sort of thing? Not the case.

 

Lainie Chait: (19:00)

Not the case. I think you need guidance, mentors and all that sort of stuff as well, because also again, you can over heal. You can get into that space where you're not living life anymore and you're just like going, "Oh, I shouldn't eat that because it might do this," you know?

 

Mason: (19:19)

Mm-hmm (affirmative).

 

Lainie Chait: (19:19)

It's this fine balance of what personal responsibility looks like to you and how you can still enjoy your life. I don't wear a halo. I know that there's stuff that I do now that potentially will bring on some electrical unrest, but I go, "Well, you know what? I've done really well to be alive." I've had nearly 300 grand mal seizures. Most of which were on my own. There is a thing called SUDEP. Have you heard of SUDEP? It's an acronym, it's sudden, unexpected death in epilepsy, and it happens around that age group where I chose to have just a lot of seizures. Mm-hmm (affirmative).

 

Mason: (20:04)

Okay. When you're taking personal responsibility, is that in the fact that I'm inside my body, I'm going to be ultimately the one that's going to be able to put this much time and understanding what's emotionally triggering me or what environmentally was doing it?

 

Lainie Chait: (20:18)

What foods you're eating that might be contributing to the way that your body functions.

 

Mason: (20:25)

Do you talk about what you found the pattern to be?

 

Lainie Chait: (20:28)

Yeah.

 

Mason: (20:29)

Can we get a snippet of it?

 

Lainie Chait: (20:32)

I should have got a few chapters-

 

Mason: (20:34)

A few excerpts.

 

Lainie Chait: (20:34)

... a few paragraphs ready. I found that, what was diet related, yeah? Was obviously sugar and too much alcohol. The way I was thinking about relationships, because it all stemmed from when my parents got divorced, there was all this abandonment story in there about men, so I would attract that in my life. Then when I would attract men that would show kind of abandonment behaviour or things that would trigger that, that would just set me off incredibly. There's a type of epilepsy now, called catamenial epilepsy, which I used to bring to my doctor and say, "It's really weird. I just keep getting a seizure a couple of days before I get my period," and they're like, "Yeah. Okay. Well, it's probably not related." Now, it's an actual... It is a particular type of epilepsy that's related to hormones.

 

Mason: (21:41)

Mm-hmm (affirmative). But it wasn't in the textbook at the time.

 

Lainie Chait: (21:50)

It wasn't. It wasn't. Hormones. Yeah. I didn't know it then that you could supplement certain parts of your body to compensate for that hormone change, at the time that happens just before you...

 

Mason: (22:03)

Supplement even particular hormonal cascades, you mean? Or...

 

Lainie Chait: (22:06)

Yeah. There's so much around now that I don't particularly take anymore, but at the time there was like perhaps... Can't even think of the herb that I was taking just before I got my period, just to sort of balance out that oestrogen, progesterone sort of imbalance that might then set... Also, internal temperature. If you're internally hot, and that's a Chinese thing as well, if you're hot inside, then that can trigger it as well.

 

Mason: (22:42)

Mm-hmm (affirmative). Yeah. You could almost like pinpoint what kind of symptomatology, and excess heat, and excess liver heat, and all those kinds of things.

 

Lainie Chait: (22:56)

All that.

 

Mason: (22:56)

Mm-hmm (affirmative).

 

Lainie Chait: (22:56)

Unless you find the right practitioner at the right time, which I did, because when I moved here, I saw a lady called Ann-Mary. She was working in the Integrative Mullum, which doesn't exist anymore, her and her hubby, and she just was spot on. She did all the tests. She worked with me. I trusted her completely. We were doing collation and she got me starting to think about magnesium. She got me starting to think about there's too much copper in my body and all the-

 

Mason: (23:28)

Oh, what a legend.

 

Lainie Chait: (23:29)

Yeah. It was like this amazing epiphany to find the right practitioner, who just guided me in the right way to actually start balancing out what was going on. At the time, also, CBD wasn't even on the radar, because this is nearly 20 years ago, so I had to go looking for little backyard people to...

 

Mason: (23:54)

Yeah. There were a few around back then.

 

Lainie Chait: (23:55)

Back then, there was a few around. Yeah, I tell you, they lived in squalor, but it's not about their lifestyle, but the thing is-

 

Mason: (24:05)

And look at them now. Look at them.

 

Lainie Chait: (24:09)

Palaces. Mm-hmm (affirmative).

 

Mason: (24:10)

Yeah.

 

Lainie Chait: (24:15)

But the one thing about that was there was not so much information. I couldn't get the dose rate. I was experimenting, big time. It backfired for me.

 

Mason: (24:26)

In what way? Just the non-standardisation?

 

Lainie Chait: (24:29)

Yeah. Backfired in the fact that I was probably taking a strain of CBD that didn't... That I was taking too much. There were no dose rates. It was kind of like, "Here, take this bottle and see you." No consistency in the medicine, obviously, because it wasn't really a medicine at the time. It was just, "Here's some..." So I overdosed. Not that you can overdose, it's a really shit word.

 

Mason: (24:53)

Saturated?

 

Lainie Chait: (24:53)

I saturated myself to the point where it was the wrong strain for what I needed, and it made me more depressed and more anxious. Then, because of that, that was the catalyst to go back to Melbourne after being here for quite a few years. Go back, and sort some shit out, because it was too unpredictable. Yeah. Lots of amazing stories.

 

Mason: (25:26)

It's like the wild west of treating yourself naturally back then. It's kind of on a platter. I wonder how many people though, because epilepsy doesn't... I mean, I just haven't thought about epilepsy, but is it one of those ones that at the moment where people are... One of the ones, I know that's insensitive, but are people immediately thinking, "Right. I'm going to go and get a naturopath here. I'm going to get my minerals tested, get my hormone panels." Is there any correlation there, do you think at all, in the wider population?

 

Lainie Chait: (25:53)

Definitely not. It's fear-based, because of the stigma around it. It's, my neurologist knows better than me. There's a lot of fear, because to have a seizure takes... They say that the impact on your body of the seizures that I have, the tonic-clonic ones, is like running a 14 kilometre marathon in that two to three minutes that you're on the floor. People don't want to experience that. It's also hard for the people watching, because I've also had experiences where people watching me, there's not much they can do, and so they go internal and it becomes about them, so they get post-traumatic kind of like stress, not a disorder. Just at the time, they're just like, "Fuck, that was intense, and I couldn't do anything to help, and I don't want to see that again."

 

Mason: (26:48)

It's like they get victimised, based on their own lack of capacity to do anything. I wouldn't say incompetence, but ...

 

Lainie Chait: (26:59)

It's just lack of knowing, I think, and having faith in themselves, because there are people that would just be all over it, be like, "Yep. Okay. I've got this. She'll come around in a couple of minutes. It'll be fine. Start watching, fuck off." Yeah, and others are like, "Oh my God, what do I do? Ring the ambulance. Oh, I can't deal with this," and then outsource it, but you don't actually need to do that. That's part of what my work now is about. Is just to educate so that... Because I believe, Mason, seriously, through what's going on, on the planet now, and how fragile the brain is. Anyone can have a seizure. Anyone with a brain, any mammal, animal, human, warm-blooded can have a seizure in the wrong environment, and at the moment what's happening is the very wrong environment in the world. You are considered an epileptic if you have two seizures, that's it. If you have two seizures in your life, you are then claimed by the epilepsy people.

 

Mason: (28:04)

Are there lots of different types of medication or is it just kind of like a few standards?

 

Lainie Chait: (28:10)

There's a few standards that they rely on. There's a lot more than when I was treated 30 years ago. They're not designed specifically for epilepsy, so it's a massive guessing game. They've got their like, "Okay, you're displaying with these kinds of things, so we'll try this." Yeah? "And if not, we'll throw that on top." Yeah. I mean, I've heard about lots of people. I mean, I, myself was on 1500 milligrammes of different drugs at one stage, but that was just way too much. People are on 3000 milligrammes of drugs. I mean, that may not actually, in this conversation, mean anything, but it's a lot, it's a lot.

 

Mason: (29:01)

Yeah. I mean, it's slightly... I mean, I have a friend at the moment, she was having... Well, she didn't know what was going on there for a few weeks and then got the diagnosis of been a brain tumour and then was told that she was having these little fits, and now she's been diagnosed as epileptic, and that's the one medication that she's on while she's trying to find her way around that whole conversation and getting on. Are you on medication at the moment? Do you mind me asking?

 

Lainie Chait: (29:32)

I had a hip replacement this year and it was advised that I go back on, what they call a small dose, but what I call big enough. Yeah? For someone that wanted to do it without it, but actually, because it was the unknown, and because I've been fighting the medical industry for so long, and pharmaceutical industry, and going... This time, it was all just about yes, because this was all foreign to me. To be cut open and things that I hadn't experienced, so I didn't know how my brain was going to...

 

Mason: (30:06)

Acute times like that, Western medicine comes in.

 

Lainie Chait: (30:08)

Yeah. That's right.

 

Mason: (30:10)

Just like a little bit of padding. That's like what I'm watching my friend go through just trying to have, cool, get that little bit of padding, get that diagnostics. Utilising it appropriately, and then for the fits are one thing and then the tumour is another, but the...

 

Lainie Chait: (30:26)

But they all stem from the same thing, which is abnormal electrical activity. That's really all it is. That's all epilepsy is. It's abnormal electrical activity that is fueled by fuck, who knows, everyone's different. I think there's a lot of people with epilepsy that are living lives that bring them on. That are just ignoring stuff that they've been maybe just too hard trauma. There's big dialogue around trauma at the moment.

 

Mason: (30:59)

Huge, isn't it? Yeah.

 

Lainie Chait: (31:00)

Yeah.

 

Mason: (31:00)

That's great.

 

Lainie Chait: (31:00)

It's really interesting. Really interesting. Yeah, the trauma's just too deep and too dark to go into, and too painful, and so it represents in abnormal electrical activity that perhaps could be padded with dealing with some of that.

 

Mason: (31:17)

What have you found has been effective for you? To go into the trauma into the dark places?

 

Lainie Chait: (31:26)

Well, no one would ever let me do an Ayahuasca journey because the facilitators were too nervous, I suppose, is what has been reflected back to me. I haven't been able to journey in that way, so it's all had to be talking, experiencing, watching, observing, understanding, and kind of making peace with writing this book, I suppose. Yeah. I think I went to a hypnotist once and this past life... Depending on who you talk to, this past life stuff coming for me to fix it, and find peace. It was a test, it was a fricking good test, I tell you.

 

Mason: (32:28)

Yeah. It's like, "Yeah, thanks for that."

 

Lainie Chait: (32:33)

But, it's been such a gift. Such a gift, because I have a really big understanding of how you create your reality. Yeah. When I didn't, I would be on the floor convulsing, if I went against that.

 

Mason: (32:58)

I was going to ask you about neurofeedback and that's the neurofeedback, I guess, right there for you. It's like a giant neurofeedback machine, which the brain is at all times, but whether you've been intentional about the way that you're creating your life or not, for you to go to have that much of it extremely thrown in your face.

 

Lainie Chait: (33:17)

Well recently, what was interesting is that I was seizure free for a while, and then I had to move house. I had to move house four times within a year. Each time, of those four times, two weeks after I'd moved in, I had a seizure. When I looked and analysed, and maybe had a look into that, what was happening, it was more about coming back to that place when my home was torn apart at 14, and I didn't know, and I didn't feel safe, and I didn't have a base. That made heaps of sense to me. Why would it happen every time I moved two weeks after? It's this feeling of just instability.

 

Mason: (34:08)

Yeah. That wouldn't be, because I think they say that moving house is in the top two most stressful things you can do, but if it was cortisol level related, that would most likely be during the move, but no.

 

Lainie Chait: (34:21)

No. No, it was kind of when I was just feeling a little bit settled, and then I would wake up and within... Mine usually happened in the morning, so I would... Yeah, it would happen. I'd get warning, and now I know to brace myself. I used to just go, "No, I'm going to win this, not you, brain." That could be a good time to bring out... Oh, so me and my brain have a dialogue.

 

Mason: (34:54)

[crosstalk 00:34:54].

 

Lainie Chait: (34:54)

This is going to be hard for people listening, but ...

 

Mason: (34:58)

It's okay. Let's get some fun voices.

 

Lainie Chait: (35:02)

I turned this book into a stage show, and the best way that I could explain about the dialogue between me and my brain, and the relationship, was to actually get a puppet made of my brain. So if you could see it, "Hello, I'm Norah, how are you? Named after Bloody Norah, which if you're an Australian, it's very easy." We did a show together at the Melbourne Fringe Festival, and I got her in... I had different LED lights put in her. "Yeah. One's really exciting. Look at this one. Whoa, that's like..."

 

Mason: (35:43)

I'm looking at Lainie's purple brain. The brain's got her hand up the clacker, and there's some big, bright, fantastic lipstick, and now it is lit up like a Christmas tree.

 

Lainie Chait: (35:55)

Yep. This is the explanation of what happens in the electrical storm, during a seizure, because there's no pathways that it can relate to. Right? Then this one, you can explain that one.

 

Mason: (36:09)

Well, it's all looking connected. We look like we got some flow electrically.

 

Lainie Chait: (36:15)

There's a little bit of flow. This is more about trying to find, after a seizure, just trying to find the pathways back to what normal is. Yeah? What a functioning... This is just kind of going, "Oh yeah. Okay. What's that one. Where can I find out my arm moves?"

 

Mason: (36:36)

What colour are we there again?

 

Lainie Chait: (36:36)

This is just normal. "Normal. That's what you call yourself. Huh? Normal. I don't think so." This is just a normal brain. "Hello?" Yeah, so-

 

Mason: (36:51)

Okay, [inaudible 00:36:51] the back.

 

Lainie Chait: (36:51)

Okay, [inaudible 00:36:51] the back. Yeah.

 

Mason: (36:51)

When was the fringe show? Obviously it was 2019, maybe?

 

Lainie Chait: (36:56)

Yeah.

 

Mason: (36:57)

Was it? Yeah.

 

Lainie Chait: (36:57)

Certainly was.

 

Mason: (36:57)

Thought it [inaudible 00:36:59] been on before?

 

Lainie Chait: (37:00)

Yeah. I'll leave her, this one's the nice one. I'll leave it on that. Yeah, it was 2019, and not only made her Scottish, I don't know why, because you're a comedian so you push yourself, I suppose. Never been a puppeteer, so I was struggling with so many firsts. So many firsts. Using a puppet, being on stage and learning my lines for a one hour show with dialogue between me and her. It was amazing, amazing. Used lots of lion's mane, Mason, during that time.

 

Mason: (37:37)

Did you? Yeah, cool.

 

Lainie Chait: (37:38)

Got off the booze. Yeah. Used a shit tonne of lion's mane around then. Yes. It just worked incredible. Yeah.

 

Mason: (37:48)

I mean, she is wonderful. May I say so?

 

Lainie Chait: (37:51)

Do you want to feel her?

 

Mason: (37:51)

Absolutely.

 

Lainie Chait: (37:51)

Do you want to put your hand in the clacker?

 

Mason: (37:54)

I do want to put my hand in her clacker.

 

Lainie Chait: (37:56)

It doesn't... Oh, you did. You changed her.

 

Mason: (38:00)

Oh, I changed her. Oh, wow. Oh whoa. Oh, now we're on.

 

Lainie Chait: (38:02)

"Oh, he's turning me on. He's turning me on.I don't think I've ever had a man's hand in my clacker."

 

Mason: (38:08)

Well. Oh no. I turned her off.

 

Lainie Chait: (38:12)

Yeah.

 

Mason: (38:12)

God, I have. Oh yeah. Oh gosh. Well, yeah, you got to be on. You need nimble fingers.

 

Lainie Chait: (38:24)

Yeah. Just, yeah, you... She gives me a lot of shit, so I tell a story and she's like, "That's not how it actually went. You drank too much and you fucked too many guys." Anyway... Oh, sorry.

 

Mason: (38:39)

That's okay. So she's cheeky?

 

Lainie Chait: (38:41)

She's really cheeky. She's sassy.

 

Mason: (38:47)

I understand, comedy for me has been healing. It's been a way for me to reclaim parts of myself, which I'd allowed to be swallowed up by my egoic pursuit to be something else, and also, getting swallowed up by my own stage persona, and comedy was my way to take the piss out of myself and come back down to earth. I can imagine for you, this on a whole nother level.

 

Lainie Chait: (39:10)

It is.

 

Mason: (39:11)

Do you get that stage clarity when you're up there? It's like when you're in your zone, it's like a professional tennis player, the ball slows down and all of a sudden you can be in your show, and you can be in your lines, and you can be fretting about what line's coming up, but then you go above yourself and you start doing... You've got some kind of healing and observation about what's actually... Making connections that are beyond... You couldn't have done it anywhere else, except on stage and in the middle of a show.

 

Lainie Chait: (39:39)

Well, that's where I plan to get to. The director that did the first run with me, she was amazing. She was very lines based and I'm on stage, when I can riff a bit and I can get off that script. I work so much better like that, but with this particular first run of the show, and if anyone's a director out there I am looking for one, because I'm looking for... to bring this back to the stage. It's a fantastic show actually. Yeah. I'm looking for a way to be able to have a little bit of fun with it, but a little bit off script as well, but still knowing what I want the message to be, but having a bit more of a riff with her, because she's talking for all brains. She's sitting on her pedestal talking for all people's brains saying, "Take care of us, just take care of us. We're everything"

 

Mason: (40:49)

Before we go, where are you at in practical terms? What are your favourite little brain healing activities and supplements, or whatever it is?

 

Lainie Chait: (41:01)

It's a good question. I'm taking some CBD, and I am also taking lion's mane. I am taking vitamin B, B12. Very good for... and magnesium. Now, I kind of let the supplement call me. It's like, "Okay, well, you need a bit more of this, or your adrenals are a bit low, so I'll go for the Jing.

 

Mason: (41:30)

Then you go intuitive after a while, don't you?

 

Lainie Chait: (41:33)

You do, you just do. I mean, supplements or vitamins are a bit... The same with any kind of medicine. It's like, you don't want to rely too much on any one thing. You want your body to sort of like get a big hit of it and then see what it can do itself. In the work that I'm doing now, can I just plug my podcast? [crosstalk 00:41:55] one.

 

Mason: (41:55)

Yeah, absolutely.

 

Lainie Chait: (41:56)

I now do a podcast called Love your Diagnosis, and what that is celebrating, is every week that I have a person that's been diagnosed with something, that they've found the light. They've gone on the allopathic journey and gone, "Oh, this might not be everything that I need," and they've done exactly what I did, and have just gone and riffed with the rest of the world and alternative medicines, and found ways to treat and manage, not cure, but treat and manage the stuff that's going on for them, so they can live a really fun, healthy lifestyle. Yeah, if you've got a story like that, please hit me up. I'd love to have you on the podcast.

 

Mason: (42:38)

I mean, that is fascinating, because that's a dark night of the soul sometimes. Like a lot of people, it's too scary to go into that darkness, to go off on your own. Yeah. I mean, especially if you think that it's one or the other. You just said allopathic going, "Okay, maybe that's not everything, and I need to make some other considerations," but that's you. Again, I'm watching a friend go through that at the moment, going, it's either open up your brain, they take your skull off and cut out this tumour, or go down your own route for however long. It's that moment, those crossroads, I guess. You talk about those crossroads a lot.

 

Lainie Chait: (43:15)

Totally. Yeah, and all sorts of different diagnosis, and some really slips of gold in there for people, because I think when you get diagnosed with something like this.

 

Lainie Chait: (43:39)

You've got a choice, when you walk out of that doctor's office, am I going to let someone else take charge of my life? Or am I going to be in the driver's seat of it? If I have to use the medicine, great, but I encourage people through other people's stories to be back in the driver's seat of this. Research, that's been the message so far from everyone at the end, because I ask everyone to say a little tip for someone going through it. Research, don't take your first... Always go and get second opinions and be in it, be right in it, right in it. Don't let anyone control how you look at your health and how you heal.

 

Mason: (44:27)

That's where Western, I guess, comfort path of least resistance, automation. That's where it can come and bite you on the arse. If you've been living that life of just cushy Western life, and you get that first diagnosis and you go, "Cool, got no choice. This is what you do." Right? It's a shame, just how much we've given away that power. Not to say that we don't make a choice fully to go allopathic or whatever.

 

Lainie Chait: (44:58)

Right. Yeah. But I think there are also a lot of people that are like, just give me the magic pill. I want to forget about it. I just want to get back to normal. I mean, we're seeing that today, still. It's fear-based. It just requires a lot less time to maybe take the pills, but I think at the end of the day, there's a sacrifice that you give over when you have that mentality of just throw the pills down. There is a sacrifice, whether it's stated or not, I believe there's a sacrifice your handover when you say, "Give me the pills," to your overall life on this planet and living to its fullest.

 

Mason: (45:46)

Mm-hmm (affirmative). It is confronting. I can see why it's a very confronting thing, because if you do take responsibility and say, "I'm fully going to make this decision," you then have to acknowledge all the other decisions that you possibly could have made, and that you don't know what the outcome is going to be, so it's not just the way that it's presented now, when you go, "Look, your only choice right now is whatever, chemotherapy." That's your only choice, and so people go, "Okay, cool. It's my only choice. I do it." Then whatever the outcome is, they're like, "Oh, well, wouldn't have turned out any other way. That was the only choice." Very easy. Although it's hard going through something like chemo, it's a very easy way of approaching something, which is... and I get it. I haven't had to be... I've watched lots of people go down that route.

 

Mason: (46:36)

It's nice, even those friends that have gone for chemo, they've gone, "I know all my other options, and I'm the one... I'm not doing this because the allopathic doctors are getting their kick back, and all they can do is say, 'This is what you need to do, and anything else is unethical.'" They're like, "I'm making that decision fully, because I know." Then also, that gives them the opportunity to go, "Well, I'm not just going to play their game. I'm actually going to be engaged with my treatment and make sure that I come out the other side of life," but it can be harrowing to take that responsibility.

 

Lainie Chait: (47:05)

Very, and the guy that I just did a podcast with, with colorectal cancer, he has some incredible information about his journey. Yeah, I recommend it to everyone, Love your Diagnosis. This last one, he had just incredible stuff that he... He's not saying chemo's a bad thing. He's just saying, "In my case, I did this, this, this, and this, and I cured it." Mm-hmm (affirmative).

 

Mason: (47:33)

Sounds like a legend.

 

Lainie Chait: (47:34)

Amazing. So, yeah.

 

Mason: (47:39)

Yeah. I wonder if your podcast will start getting featured in little doctor's Facebook groups.

 

Lainie Chait: (47:48)

As don't listen?

 

Mason: (47:49)

Yeah. Yeah, you're a quack. Lainie the quack. Lainie, thanks for coming along and sharing your story.

 

Lainie Chait: (47:57)

That is my pleasure, and we're giving away a book?

 

Mason: (48:00)

Yeah. We're giving away a book. Hopefully you guys are up to date. Hopefully you're up to date on the podcast schedule, and you're in time for you to go over to the SuperFeast Instagram and go in the draw right now. You guys, you're onto it. Look at you guys. Thank you so much for hanging around and watching the live. That's like...

 

Lainie Chait: (48:24)

It's amazing. Thank you.

 

Mason: (48:25)

That is amazing, and thanks for everyone for listening. What's the best place for everyone to find you?

 

Lainie Chait: (48:30)

Well, Electro Girl Productions is on Facebook, and just lain_star on Insta, I suppose that's probably the... Then private message me if you want to be part of the podcast, or if you just want to talk epilepsy, because I know it, so if you're out there, the invisible illness, it doesn't have to be so invisible. Talk to me. Mm-hmm (affirmative).

 

Mason: (48:50)

Thanks so much.

 

Lainie Chait: (48:52)

Thanks.

Alexandra Anttilla
Alexandra Anttilla

Alexandra is our SuperFeast podcast queen, making the magic happen behind the scenes in production. An ethereal creature, talented wordsmith and absolutely exquisite human, Alex is privy to the unseen, unheard and unfelt subtitles that swirl around us. A dreamer, creative, entrepreneur and baby mumma to the beautiful Zella, Alexandra carries a depth of presence and a wisdom beyond words. Alexandra holds a special place in the hearts of many, her gentle, yet soulful words offering nourishment and insight to our SuperFeast community as she shares them weekly in the SuperFeast podcast blog and newsletter.



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