June 4, 2024 • 35 mins
In this episode, host John Grimes sits down with Jonathan Tuteur, an executive leadership coach, speaker, and author of the forthcoming book, Seizing Today, to discuss his remarkable journey with epilepsy.
Johnathan shares his story, from frequently being misidentified as John Stewart to his life-changing epilepsy diagnosis at the age of 30. With over 500 seizures, multiple brain surgeries, and countless tests, Jonathan has faced significant challenges. Through his trials and tribulations, he has discovered a new purpose and authenticity in his life.
Listen in as John talks about the complexities of epilepsy, the importance of de-stigmatizing the condition, and his efforts to raise awareness. He also discusses his upcoming book, "Seizing Today: Discovering Purpose and Authenticity in a Life-Changing Diagnosis," which provides an in-depth look into his experiences that highlights resilience, the power of finding your true calling, and the significance of a supportive community.
Does Jon Tuteur look like John Stewart? See for yourself.
🎙️ EPISODE LINKS ⬇
Jonathan Tuteur's Guest Profile (bio, social inks, etc.) :: https://podcast.johnbgrimes.com/guests/jonathan-tuteur/
Jonathan's Website :: https://triplepllc.co/
Jonathan's Authority Magazine Article :: https://medium.com/authority-magazine/unstoppable-how-jon-tuteur-has-redefined-success-while-navigatin
🎙️ PODCAST LINKS ⬇
READ JOHN GRIMES' MENINGITIS STORY :: https://podcast.johnbgrimes.com/blog/destiny-is-debabable-the-story-summary/
GET YOUR OWN DONT WAIT MUG! :: https://amblind.creator-spring.com/listing/destiny-dont-wait-black?product=1565
For show notes, guest profiles, photos, blog, social media links & more, visit JohnBGrimes.com
.:: Destiny is Debatable is a Cemblem production and made possible by the generous support of our listeners and Executive Producer, Erin Grimes.
Please consider supporting to sustain our content. :: https://ko-fi.com/ambiguouslyblind
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Music.
(00:12):
Welcome to destiny is debatable a podcast and movement that will encourage you
to build your life into the one you want,
here's your host a guy who's still remarkably tall for his age john grimes,
hey uh john stewart welcome i'm sorry john tucher welcome to the destiny's debatable
(00:39):
podcast thanks for stopping by thanks for having me john appreciate it you're
not the first to uh miss misrepresent me for yeah yeah that's what i hear sorry
about that so like when when did that
start since as my my two
girls like to remind me when my hair turned from gray
to white so you know a couple years ago or so okay yeah
(01:02):
are you is that a are you okay with that i mean has
that worked out to your advantage ever have you gotten like a cool seat
at the at a restaurant or something because you know it's john stewart or does
that work to your advantage not quite that good but hey there's there's worse
people to to look like but i the one story i was on a plane once with my wife
(01:22):
and the the flight attendant came over and started to give me some free things,
you know here you go mr stewart and i'm like wait no well thanks i'll take it
yeah great yeah you know i'll take the free cookies appreciate it or whatever
you're gonna ask for an autograph.
No do you think you'd do it you know why not right i mean i just i'm just too
(01:47):
honest of a person so i always sit when people are like are you like no no no
no i'm not yeah but i've had lots of people say to me you just need to go with
it so i don't maybe maybe try it sometime yeah,
yeah see where it gets you i mean you might could kind of end up in a in a maybe
an awkward place or something though yeah that's that's interesting it is a
(02:09):
striking resemblance and this is a audio only podcast which is the theater of
the mind and the audio and radio but there is a there's a photo of John,
as the image for the episode as well as the guest bio picture on the website.
So look down in the show notes, you'll see a link to that and you can,
I don't know, gauge for yourself and just see how close they are.
(02:31):
We'll find out if yours is funny or at least do you have any comedic background or anything?
Definitely not. Although I did take a...
What is that called again? Improv. I took an improv class once.
I was blanking on that. But no, no comedy background.
And just out of curiosity, did I send you the picture at a friend who did a side-by-side of us?
(02:53):
No, but you should. And we'll include that too. Awesome. Yeah. Please do. Yeah.
Roger. That's awesome. Yeah. So I ran into you, John, from an article in Authority Magazine,
which should be in the show notes below as
well on the unstoppable series that they
did about life-changing events in
(03:15):
your case epilepsy so i want to i want to
visit with you about that it's a pretty fascinating story and you've written
a book about it that's coming out sometime pretty soon but before we get into
that john i have some questions that my audience uh i'm contractually obligated
to ask you um to kind of get to
know you so if you can hang in there for a couple of questions of course.
(03:37):
So what's your favorite band or type of
music uh i love country music
so hopefully that works for for a guy from dallas um
but uh yeah pretty much any type of country music
uh zach brown band is probably my favorite okay
of all time i'm a country guy now in texas
we have like texas country there's nashville country there's you
(04:00):
know like red dirt there's all kinds of different kinds of country but
i i feel what you're i feel zach brown that's good
yeah it's probably more the pop country and
as an author i feel like that makes you a reader maybe not but um what is your
favorite book or maybe favorite author yeah i i love books um i typically am
(04:23):
reading three four five six at a time which drives my wife nuts oh wow that's
that's intense Intense. Yeah. Okay.
But for me, like, you know, I want to, I want to be excited about what I'm reading
and, you know, I don't want to just be tied down to one specific book at a time
and feel like, okay, I have to finish that before I can go to the next one.
So I have a lot of favorite authors.
(04:46):
Nonfiction is my preferred genre. I just, I love memoirs.
I love just getting into the people's heads um and
kind of living you know living
in their shoes um so i love everything by
adam grant i love uh grit by angela duckworth uh there's there's just there's
(05:08):
so many i mean i love all the mitch album books uh i could go on and on yeah
i i get that yeah you're you're well read it sounds like yeah so i'll have to
send you my book when when that time comes which is hopefully sooner than later.
Please. I can't wait. It's a non-fiction area. We talked a little bit about
that earlier off the record, but yeah, that's pretty cool. Okay.
(05:30):
So as I mentioned, you've written a book, so no secrets here as far as your
life goes once that thing is out there.
But what is something, even though you've spilled all that stuff in the book,
what is something that most people don't know about you? My default answer to
that question is I'm a triplet.
That tends to get a lot of eyebrow raises and lots of questions.
(05:57):
Of course, I had nothing to do with that, but thanks, mom and dad.
But certainly growing up that way is different.
There aren't that many of us out there. So So that certainly shaped,
you know, who I've become.
And to some extent is part of the hypothesis as to why I started having seizures at the age of 30.
(06:20):
We can't prove that scientifically, but my neurologist has certainly said that that's plausible.
So that's probably the one thing that I would share at this point.
If you could time travel to any time or place present or future where would
you go and what do you think you'd do oh gosh john that's a that's a tough one,
(06:46):
makes me think of back to the future which was one of my favorite movies um
that's a great one yeah yeah i think we're about the same age so um yeah yeah
that's that's a great yes yes um You know,
I would probably go back to the 40s.
(07:09):
Just World War II is so fascinating to me and everything that sort of surrounds
that or surrounded that.
Just, you know, seeing what, just living through that, I think would be obviously
very challenging, but also fascinating.
I love history and just, you know, I'm such a big believer in history repeats itself.
(07:35):
And I think the more we understand about history, the more we can help prevent
those types of things from happening.
And not to get into a political rabbit hole here, but, you know,
the scary thing is that there are certain things that happened in the 40s that
are happening again now.
So that's probably a really interesting time I'd love to go back to.
(07:56):
Okay, and finally, what advice would you give your 19-year-old self?
And more importantly, do you think you would listen?
Oh, gosh. I don't think I would listen because at 19, we're,
especially 19-year-old men, we're just... 10 feet tall and bulletproof and the,
(08:19):
yeah, exactly. Totally.
Music.
Let things come to you. And I think I, you know, as I look back on those years,
(08:41):
I think there were too many things that I sort of,
you know, there were directions I went in for the wrong reasons, I would say.
And I think just being able to exercise patience and really think through those
decisions, looking at sort of the bigger picture, the long-term impacts.
Packs you know it's really hard to do that at
(09:02):
19 right that's why i say there's no way i would listen to that advice but
you know at 46 it's easy
in hindsight to say those things okay you passed
the test that's all the hard-hitting questions we got okay let's talk a little
bit about your family you mentioned the triplet thing i am kind of fascinated
by that how common are triplets not that not that you're an expert i guess on
(09:26):
this at all but i mean like and what you know about triplets.
Yeah, I think, you know, certainly now they're more common than they were in the seventies.
You know, we, we were not natural triplets. So I'll just put that out there.
My parents went through fertility. It was Clomid was the drug at the time.
And it was just, you know, known for producing multiple births.
(09:49):
So there, you know, it was, it was very rare back then, but now with,
you know, some IVF and everything else, it's, it's just much more common.
I don't know the specific numbers, but it's pretty rare. It's pretty rare.
I did read your book. I had an advanced copy of the book and it's tremendous.
You go into kind of something I didn't know about triplets or multiples,
(10:10):
even more quadruplets and so on.
There's a lot of health concerns for the babies that I really wasn't aware of.
Yeah, you know, so my mom is five foot one.
So not, not a big person by any means.
And, you know, I think about, you know, three fetuses in her belly.
(10:30):
That's, that's pretty dangerous.
And so they, you know, their, their doctors told them, look,
there's a pretty high likelihood that one or more of them won't make it.
And so they told all of their friends that they were having twins because they,
you know, they felt like, you know, it's just much easier to,
you know, to tell that story and not have to explain why one of them, one of us died,
(10:54):
you know, than to go the other way.
So when they called their friends to tell them that they had,
you know, that there were three of them, that was just a huge, huge surprise. eyes.
Fast forward to when my wife and I were hoping to get pregnant.
And the first time around, we had to go through IVF.
And I'll just never, and you probably remember this from reading the book,
(11:15):
I'll never forget sitting there with our IVF doctor.
And he was very clear about, we will only implant one embryo at a time because
we really want to limit the possibility that you could have twins or triplets
or, you know, any sort of multiples.
And my response to him was, well, I'm a triplet and, you know,
we all came out, you know, pretty normal.
(11:38):
And he just got very serious and said
to me you're very lucky you know
it's it's very dangerous to not only
to the the fetuses but to the mother as well and you know it's it's my job to
help you get pregnant but also to do it as safely as possible it was really
(11:58):
eye-opening for me i hadn't had never thought about it that way wow crazy and
you feel like i think you said earlier that
the so i don't know much about epilepsy
my biggest source of information about that is
your book so i mean i i know that stuff and i'm aware of it i just don't know
you know a tremendous amount about it but i'm super interested in learning about
(12:21):
it but it sounds like you said that you feel like your chances of that were
increased from the triplet situation is that Did I hear that right?
So I wouldn't say it exactly like that.
And, you know, any scientist or doctor, not that they would bristle at that,
(12:43):
but, you know, there's no way to prove it.
It's just there's a very large percentage of people that have epilepsy that don't know why, right?
So, you know, the common causes are traumatic brain injury, you know,
those types of things, some sort of injury to your brain or,
you know, something else, you know, catastrophic has happened to you that's triggering seizures.
(13:07):
In my case, you know, I was living a pretty normal life for 30 years and then
suddenly out of the blue started having seizures.
And so, you know, I think it's just really challenging when something like that
happens and you don't have answers, right?
It's just this question of why just was really challenging.
And so, you know, as we kind of talk through it, I think my mom actually came
(13:32):
up with that explanation first.
And I, you know, talked to my neurologist about it and he said,
listen, it's plausible.
We'll never be able to prove it, but it's plausible. So...
You know trauma in the womb is sort of the term we
use right again you have three babies in a really small person's belly
bouncing around off of each other and you know other
crazy things going on in there so who knows otherwise i
(13:55):
just you know have no other explanation looking back on
it you said it it struck at 30 for you was there
any indications that you
may have glossed over
or been ignored or been unaware
of that's that may have
indicated something earlier on yeah you know i've i have racked my brain on
(14:18):
that question so many times and i just can't think of anything yeah you know
again that's yeah i've just i've gone through that mental exercise so many times I just,
I can't find anything in my past that would point to it.
I wish that I could, but yeah, I haven't.
(14:40):
So at 30, what happens? Like how does what you have, walk me through the beginning
of understanding that something's going on here.
Yeah. So at 30, I was, I was a workaholic and it was late at night.
I was working at my desk in my, in my apartment in Washington,
DC. And the next thing I know, I'm waking up slumped over against my bed, which abutted my desk.
(15:04):
And I was confused. I didn't know what happened.
But I just sort of chalked it up to, okay, I'm really tired and working like crazy.
I mean, I was working 60, 80, 100-hour weeks at times.
And I just got in bed, fell asleep, woke up the next morning.
And I was in a meeting with my primary client who was sitting across from me in an office.
(15:29):
And the next thing I know, I'm waking up in an ER.
And as he recounts it, we were talking and in the middle of the conversation,
my eyes rolled back in my head.
My head fell down, hit the table.
I fell down on the floor and started to shake a bit. But at that point,
the doctor still wasn't sure what was going on, didn't diagnose me with anything.
(15:54):
Just, you know, sometimes the body does weird things and sometimes we just need to reboot.
So it was sort of like, let's keep an eye on this. But, you know, there's no diagnosis.
And then about a month or so later, I was on a work trip to Ottawa.
Yeah, I think this is the great story from the book where you passed away, right? Is that it?
(16:17):
Exactly. So I was doing a lot of work with the State Department at the time.
And I was at the American Embassy in Ottawa with a colleague sitting at a conference
room table with a bunch of State Department employees.
And again, next thing I know, I'm waking up in an Ottawa ER room.
And unbeknownst to me at the time, but later I learned from my boss that,
(16:39):
so at the time I was working for Accenture and they had a group called Accenture Security Operations,
which is the group that is in charge of people that are traveling overseas.
And so she would speak to this group all the time, but this time they called
her and literally said, John Tudor passed away.
Way and she was you know
(17:03):
obviously shocked yeah wow yeah and
she she then called my colleague who
i was traveling with and you know she said no you know john didn't pass away
he passed out oh out away big big difference there yeah yeah so you know and
and we're we're in ottawa you know where they speak english so you can't even
(17:24):
blame it on you know translation from one language to another,
I'm not exactly sure how they got away and out, confused there,
but there's a big difference. Yeah, big difference, yeah.
So yeah, at that point, the doctor,
based on what was described to him and how I was acting after I woke up,
(17:46):
diagnosed me with epilepsy,
gave me Dilantin, which is one of the oldest anti-seizure medications out there,
and before I could even ask him any questions, he just kinda left.
And that was really, really difficult because that was not anything that I was prepared for.
(18:06):
And that began more than 500 seizures.
Countless medical tests 40 over 40 days and nights in the hospital three brain
surgeries 15 hole drilled my head i mean on and on just the craziness that's
occurred since then yeah do you think the holes in your head contributed to the white hair at all.
(18:27):
Is that possible i mean for sure the stress of holes in your head would would
do something but i don't know if the actual drilling yeah you know we're gonna
go with that i like that that's it's It's my neurosurgeon's fault that he drilled
all those holes to make all of my hair white instead of gray.
Yeah, it's a pretty amazing journey. You walk through all those holes and the
(18:50):
surgeries and all those things in the book.
And it's really pretty fascinating and quite a journey.
I guess in layman's terms, what is epilepsy?
So it's multiple occurrences of seizures, which are, which is electrical activity
in your brain that fires abnormally that sort of lay person's term.
(19:13):
If you know, if we had a epileptologist on here, he or she would probably correct
that in somewhat deeper form, but in lay lay layman's terms,
that's essentially what it is.
And where this gets complicated is
there are over 30 different types of seizures you know
so most people think oh seizure grand
grandma seizure epilepsy grandma seizure right you you lose
(19:36):
consciousness you shake that's that's that was my knowledge
of it was a grandma seizure yeah yeah then
that's that's really what most people know that's all i knew
before this happened and you know
i've definitely had it's the the medical term
for grand mal seizures tonic-clonic seizure I've had many of those but the majority
(19:58):
of the seizures I've had are what's called focal onset aware seizures those
are I actually don't lose consciousness I'm awake.
And there's really three phases and they detail this in the book.
The first phase is a really awful, nauseating smell, which I'm not going to
(20:20):
go into the specifics around that now. I do it. I appreciate that. Yeah.
So hard to explain, but just this really bad smell. And then this is the craziest
part is it's so so so the term aura, I think, is common to people.
Right. You know, people think aura, deja vu.
I did a lot of research on this. Deja vu is not really the right term for what I experienced.
(20:43):
It's really more of a flashback because it's as if my brain is playing a movie
or a scene from my life that has already happened.
So I'm transported back to some place in my life 10, 15, 20 years ago.
It's already happened. it's the strangest thing and it's like the same set of
(21:05):
like five six seven scenes every time this happens so I so the movie plays and
then I get really sweaty like on my hairline and my back the nausea continues to increase and,
then then it ends how long
what's the duration of that it's it's
(21:26):
pretty short a couple minutes at most okay and do you know immediately what's
happening or is there some sort of trigger that lets you know it's happening
or you're just in it before you kind of know what happened yeah i mean it's
really the smell and and the aura that the beginning of that.
Notifies me for sure you talk about the bees too this buzzing type thing that happens.
(21:51):
Yeah so i have a i have so what i really wanted to do among other things in the book is to make,
epilepsy more understandable for people because
it is so complex and the brain is so complex there's still so much we don't
know about it and so i i came up with this this b analogy to kind of make it
(22:13):
you know make it easier for people to understand so so there's a lot of,
comparisons to how bees operate and how the brain operates.
And yeah, so that theme kind of, I carry that throughout the book and reference that throughout.
So hopefully people will get that as they read it.
(22:36):
Sorry, how many people have epilepsy in the US?
One in 26 people, which I think when most people hear that statistic,
they're shocked, right?
That's not an insignificant amount.
No, it's not. It amounts to about 65 million people worldwide.
So chances are that your listeners, every single one of them knows at least
(23:03):
one person with epilepsy.
They just don't know it because so many people just don't talk about it.
And that's another reason why I wrote this book and why I wanted to come on
your podcast and other podcasts.
I really want to talk about it. I want to de-stigmatize it.
I want to make people really understand what it is. is, and I've shared this
(23:24):
story before, I'm going to share it again.
I met a pediatric neurologist in 2021 at the Epilepsy Foundation Conference.
And he was telling me a story about one of his patients that came in for an
appointment with his mother.
And the mother, during the appointment, looked at him and said,
we're taking little Davey to church this weekend for an exorcism.
(23:48):
And doctors like no no no
no no no because he
has epilepsy and is experiencing seizures does
not mean that he's possessed by the devil and again this is
2021 in the united states there are still people that believe that you're possessed
by the devil so frightening but true so i'm just trying to trying to shatter
(24:11):
all those stigmas and and show people that yeah you can you you can still live a great life.
It may not be exactly the life that you planned or that you wanted,
but you can still live a great life.
Yeah, I think a term that comes to mind as you kind of described that is it's
hidden or people don't really know about it. It's invisible disability.
(24:33):
Yeah. Which is something I know a lot about.
There's some things in my story in my life that are unique about me that are mostly invisible.
To anyone that doesn't really know much about me.
And sometimes those things, you know, I can't imagine particularly at your age
(24:55):
of 30 or during the early stages of your diagnosis or journey into epilepsy.
Like you're feeling like this can happen anytime.
You don't know what's going to happen or when it's going to happen.
And a lot of stress around that.
And that happens with, I think, people that have these different disabilities
or abilities that make for some awkward or unique, for sure,
(25:20):
in-person interactions.
And I think the more we talk about those kind of things and de-stigmatize all
of them, people have a better understanding for what goes on there.
Totally. Yeah, your journey with meningitis certainly falls in that category.
Invisible and not many people understand it. okay so how many brain surgeries
was it again three three and only 15 holes.
(25:45):
Right only yeah cool okay yeah
you you do go through a lot of that stuff in the book and it's pretty amazing
i i don't know what that must be like but the book title it's seizing today
i don't know the subtitle i don't have it in front of me do you have do you know when it's
(26:05):
coming out sometime later this year or the summer or what sometime this summer
is the latest that i've heard from my from my publisher so hopefully that that's
okay and for future people listening that would be the summer of 24 in case
you're listening in 2030 or 3015 or whenever that is.
(26:26):
And the subtitle real real fast i can give that to you discovering purpose and
authenticity in a life-changing diagnosis.
Yeah, that's great. Yeah, I can relate to that.
Exactly. Talk a little bit about kind of what that means to you. Yeah, you know...
I always enjoyed the work that I did prior to this.
(26:51):
I felt like I excelled. I did all the things I was supposed to do,
quote unquote supposed to do.
But it just never felt right. And the way I describe it is there was always
sort of friction around it.
And when I finally decided to pivot my career, that's when I started to realize
(27:14):
there are things we can do that are our superpowers.
And that's what I'm doing now with my executive coaching work and facilitation
and speaking and writing.
These are all things that I pinch
myself in the morning that I get to do them. I love the work that I do.
(27:35):
And so that's really what it's about. Like I just feel so much more authentic
and have a, and live a purpose driven life, quite frankly.
Like I, I clearly know what my purpose is and why I was put on this planet.
Like that, I know that sounds maybe a little bit hokey. No, I love it.
Cause I, yeah, I got it. Or, or, or spiritual, but you know,
as my, my editor told me, you're very spiritual, John. I was like,
(27:59):
no, I'm not. He's like, yes, you are.
I've read your book. I've edited your book. You're very spiritual.
I'm like, maybe I need to think about that some more. You're right.
So yeah, I'm just a big believer in we're all put on this planet for some reason or reasons.
And it's up to us to sort of figure out what those reasons are.
And when we do, it just feels right. And so that's kind of, I was able to get there.
(28:26):
Yeah, that's a tremendous feeling. Congratulations on that. That's got to be great.
I'm hoping to get there someday myself and
and reading the book I feel like there's and I might be reading
too much into this here but I feel like there there's a
because it's true for me that there's this amazing connection with your wife
Julia that kind of you know I don't I don't want to put words in your mouth
(28:50):
but I feel like there there was a time you kind of chronicle the Which is a
great meat story that you guys have.
But you're kind of...
Nervous about bringing these things up initially with her and then once it happens,
(29:11):
like it's just great and it all makes sense and i've i've experienced that myself
personally in my life so i can really relate to that and i think i just think
that's incredible yeah i mean i'll i'll never forget just you know it's one
of those things i was worried about it and dating like Like,
how am I going to explain this to someone, right?
(29:33):
And I'll never forget, it was, you know, a lazy Sunday morning.
And she leans over to me and says, tell me a secret.
And, you know, sort of flippantly. And the only thing I hadn't told her was,
you know, that I have epilepsy.
And I just kind of blurted it out. and she just was so
(29:53):
incredibly understanding and supportive and curious and
all the things that i needed and you know
nothing has changed ever since she's just as she's
incredible wouldn't be able to get through all this with without
her so i i don't know how i tricked her into marrying
me i can relate to that too yeah
i definitely married up my my
(30:16):
game and she made you a girl dad which is
awesome i'm a girl dad too so you know
that's i mean i don't know that i
recommend it for everyone but it's certainly
a a fun way to do it it's it's great it
is it is and you know one thing i i you know
i put this in the book and i say this anytime i can but i never
(30:37):
i never imagined that i could love my kids as
much as i do like it just it's sort
of mind-blowing when i I when I'm with them you know you you love your spouse
and your friends and your family a certain way but your kids it's just it's
a totally different kind of love yeah and it really catches the other blue once
I mean when it happens it just happens I can remember when that started yeah and it's great.
(31:03):
Back to music real quick, if I can, since you made me think of this.
Another one of my favorite bands is Chris Stapleton. And he has a song called Joy of My Life.
The words to it are incredible. But I said to my older daughter,
why don't we dance to this song together at your wedding?
She's like, Daddy, that's not my favorite one. How about starting over?
(31:29):
Okay. As long as it's Chris Stapleton, I'm good. Yeah, that's pretty amazing.
I'd get that in writing or take a video of that just so you have documented
proof that that's what it's going to be.
But, yeah, man, I don't know. I don't want to think about a wedding, though. Oh, my gosh.
Oh, man. A little far away. Yeah, I hope it's always real far away, actually.
But I feel like it's going to be here before we know it. So, gosh.
(31:51):
Probably. All right. Okay, so epilepsy mostly controlled now?
All the surgeries and things?
Where are we today with it? Yes, the third of the three surgeries was about two and a half years ago.
And other than one episode, I've been seizure free.
And the only reason for that episode was I, it's a long story,
(32:13):
but forgot to take my medication.
So since I've been on medication, have been seizure free since that third surgery.
So that's a huge, huge win.
At one point I thought, hopefully I won't
ever have to be on medication because anti-seizure medication
doesn't have the most fun side effects but in
talking to my neurologist uh it's very rare that people
(32:36):
would go off medication entirely we've we've titrated down a little bit on one
of the two medications that i'm on which is helpful but anyway to answer your
question yeah i'm doing great i really am and and there'll be advancements in
the future that that will improve that hopefully I know you do a lot of work.
You mentioned a group you're with. Is it Epilepsy Foundation or something? Yeah.
(33:03):
Yeah, so I do work with a couple. So there's the Epilepsy Foundation of America,
and that's the group that I got involved with pretty much right after my diagnosis.
And then more recently, I've been done a fair amount with CURE Epilepsy,
which is an acronym that stands for Citizens United for Research in Epilepsy.
I was founded 20 some odd years ago by Susan Axelrod, who also happened to write the foreword to my book.
(33:30):
And I'm so thrilled and touched that she agreed to do that.
And I finally actually got to meet her in person last weekend in Chicago at
their annual gala. And that was quite a thrill.
So yeah, I really, giving back to the community has always been an important
value that was instilled in me for my family and continues to be really important.
(33:52):
Awesome. All right, John. So the book is forthcoming.
Where's the best place to find you and or the book or things about that out there in the world.
Yeah. So by the time this is published, johntutor.com should be live.
And that's a place where you can order the book, learn about what I do, etc.
(34:13):
But certainly, you'll be able to buy the book on the typical places,
Amazon, barnesandnoble.com, all those kinds of places.
But johntutor.com should be the easiest place to get ahold of me.
Also, my LinkedIn handle is Jonathan-Tudor.
Posting there pretty regularly about my journey, my story, the pictures and
(34:35):
images from the different post surgeries that are kind of shocking and striking.
So that's another good place. I also post to Facebook. I am not,
unfortunately, not an Instagram person, although I know I probably need to be
or should be, but primarily Facebook and LinkedIn are where I am from a social standpoint.
All right. We'll link to those down in the show notes too, Jonathan.
(34:56):
Or John, I don't know which one to call you now, but it's been a lot.
It's great to connect with you here and looking forward to the release of the
book. Likewise. Thanks, John. Really appreciate it.
Thanks so much for spending your time with the Destiny is Debatable podcast.
Please rate and write a review wherever you subscribe. It really does help us
(35:17):
grow and reach new people.
For more information, visit johnbgrimes.com.
Destiny is debatable is a production.
Music.
Music.
(00:12):
Welcome to destiny is debatable a podcast and movement that will encourage you
to build your life into the one you want,
here's your host a guy who's still remarkably tall for his age john grimes,
hey uh john stewart welcome i'm sorry john tucher welcome to the destiny's debatable
(00:39):
podcast thanks for stopping by thanks for having me john appreciate it you're
not the first to uh miss misrepresent me for yeah yeah that's what i hear sorry
about that so like when when did that
start since as my my two
girls like to remind me when my hair turned from gray
to white so you know a couple years ago or so okay yeah
(01:02):
are you is that a are you okay with that i mean has
that worked out to your advantage ever have you gotten like a cool seat
at the at a restaurant or something because you know it's john stewart or does
that work to your advantage not quite that good but hey there's there's worse
people to to look like but i the one story i was on a plane once with my wife
(01:22):
and the the flight attendant came over and started to give me some free things,
you know here you go mr stewart and i'm like wait no well thanks i'll take it
yeah great yeah you know i'll take the free cookies appreciate it or whatever
you're gonna ask for an autograph.
No do you think you'd do it you know why not right i mean i just i'm just too
(01:47):
honest of a person so i always sit when people are like are you like no no no
no i'm not yeah but i've had lots of people say to me you just need to go with
it so i don't maybe maybe try it sometime yeah,
yeah see where it gets you i mean you might could kind of end up in a in a maybe
an awkward place or something though yeah that's that's interesting it is a
(02:09):
striking resemblance and this is a audio only podcast which is the theater of
the mind and the audio and radio but there is a there's a photo of John,
as the image for the episode as well as the guest bio picture on the website.
So look down in the show notes, you'll see a link to that and you can,
I don't know, gauge for yourself and just see how close they are.
(02:31):
We'll find out if yours is funny or at least do you have any comedic background or anything?
Definitely not. Although I did take a...
What is that called again? Improv. I took an improv class once.
I was blanking on that. But no, no comedy background.
And just out of curiosity, did I send you the picture at a friend who did a side-by-side of us?
(02:53):
No, but you should. And we'll include that too. Awesome. Yeah. Please do. Yeah.
Roger. That's awesome. Yeah. So I ran into you, John, from an article in Authority Magazine,
which should be in the show notes below as
well on the unstoppable series that they
did about life-changing events in
(03:15):
your case epilepsy so i want to i want to
visit with you about that it's a pretty fascinating story and you've written
a book about it that's coming out sometime pretty soon but before we get into
that john i have some questions that my audience uh i'm contractually obligated
to ask you um to kind of get to
know you so if you can hang in there for a couple of questions of course.
(03:37):
So what's your favorite band or type of
music uh i love country music
so hopefully that works for for a guy from dallas um
but uh yeah pretty much any type of country music
uh zach brown band is probably my favorite okay
of all time i'm a country guy now in texas
we have like texas country there's nashville country there's you
(04:00):
know like red dirt there's all kinds of different kinds of country but
i i feel what you're i feel zach brown that's good
yeah it's probably more the pop country and
as an author i feel like that makes you a reader maybe not but um what is your
favorite book or maybe favorite author yeah i i love books um i typically am
(04:23):
reading three four five six at a time which drives my wife nuts oh wow that's
that's intense Intense. Yeah. Okay.
But for me, like, you know, I want to, I want to be excited about what I'm reading
and, you know, I don't want to just be tied down to one specific book at a time
and feel like, okay, I have to finish that before I can go to the next one.
So I have a lot of favorite authors.
(04:46):
Nonfiction is my preferred genre. I just, I love memoirs.
I love just getting into the people's heads um and
kind of living you know living
in their shoes um so i love everything by
adam grant i love uh grit by angela duckworth uh there's there's just there's
(05:08):
so many i mean i love all the mitch album books uh i could go on and on yeah
i i get that yeah you're you're well read it sounds like yeah so i'll have to
send you my book when when that time comes which is hopefully sooner than later.
Please. I can't wait. It's a non-fiction area. We talked a little bit about
that earlier off the record, but yeah, that's pretty cool. Okay.
(05:30):
So as I mentioned, you've written a book, so no secrets here as far as your
life goes once that thing is out there.
But what is something, even though you've spilled all that stuff in the book,
what is something that most people don't know about you? My default answer to
that question is I'm a triplet.
That tends to get a lot of eyebrow raises and lots of questions.
(05:57):
Of course, I had nothing to do with that, but thanks, mom and dad.
But certainly growing up that way is different.
There aren't that many of us out there. So So that certainly shaped,
you know, who I've become.
And to some extent is part of the hypothesis as to why I started having seizures at the age of 30.
(06:20):
We can't prove that scientifically, but my neurologist has certainly said that that's plausible.
So that's probably the one thing that I would share at this point.
If you could time travel to any time or place present or future where would
you go and what do you think you'd do oh gosh john that's a that's a tough one,
(06:46):
makes me think of back to the future which was one of my favorite movies um
that's a great one yeah yeah i think we're about the same age so um yeah yeah
that's that's a great yes yes um You know,
I would probably go back to the 40s.
(07:09):
Just World War II is so fascinating to me and everything that sort of surrounds
that or surrounded that.
Just, you know, seeing what, just living through that, I think would be obviously
very challenging, but also fascinating.
I love history and just, you know, I'm such a big believer in history repeats itself.
(07:35):
And I think the more we understand about history, the more we can help prevent
those types of things from happening.
And not to get into a political rabbit hole here, but, you know,
the scary thing is that there are certain things that happened in the 40s that
are happening again now.
So that's probably a really interesting time I'd love to go back to.
(07:56):
Okay, and finally, what advice would you give your 19-year-old self?
And more importantly, do you think you would listen?
Oh, gosh. I don't think I would listen because at 19, we're,
especially 19-year-old men, we're just... 10 feet tall and bulletproof and the,
(08:19):
yeah, exactly. Totally.
Music.
Let things come to you. And I think I, you know, as I look back on those years,
(08:41):
I think there were too many things that I sort of,
you know, there were directions I went in for the wrong reasons, I would say.
And I think just being able to exercise patience and really think through those
decisions, looking at sort of the bigger picture, the long-term impacts.
Packs you know it's really hard to do that at
(09:02):
19 right that's why i say there's no way i would listen to that advice but
you know at 46 it's easy
in hindsight to say those things okay you passed
the test that's all the hard-hitting questions we got okay let's talk a little
bit about your family you mentioned the triplet thing i am kind of fascinated
by that how common are triplets not that not that you're an expert i guess on
(09:26):
this at all but i mean like and what you know about triplets.
Yeah, I think, you know, certainly now they're more common than they were in the seventies.
You know, we, we were not natural triplets. So I'll just put that out there.
My parents went through fertility. It was Clomid was the drug at the time.
And it was just, you know, known for producing multiple births.
(09:49):
So there, you know, it was, it was very rare back then, but now with,
you know, some IVF and everything else, it's, it's just much more common.
I don't know the specific numbers, but it's pretty rare. It's pretty rare.
I did read your book. I had an advanced copy of the book and it's tremendous.
You go into kind of something I didn't know about triplets or multiples,
(10:10):
even more quadruplets and so on.
There's a lot of health concerns for the babies that I really wasn't aware of.
Yeah, you know, so my mom is five foot one.
So not, not a big person by any means.
And, you know, I think about, you know, three fetuses in her belly.
(10:30):
That's, that's pretty dangerous.
And so they, you know, their, their doctors told them, look,
there's a pretty high likelihood that one or more of them won't make it.
And so they told all of their friends that they were having twins because they,
you know, they felt like, you know, it's just much easier to,
you know, to tell that story and not have to explain why one of them, one of us died,
(10:54):
you know, than to go the other way.
So when they called their friends to tell them that they had,
you know, that there were three of them, that was just a huge, huge surprise. eyes.
Fast forward to when my wife and I were hoping to get pregnant.
And the first time around, we had to go through IVF.
And I'll just never, and you probably remember this from reading the book,
(11:15):
I'll never forget sitting there with our IVF doctor.
And he was very clear about, we will only implant one embryo at a time because
we really want to limit the possibility that you could have twins or triplets
or, you know, any sort of multiples.
And my response to him was, well, I'm a triplet and, you know,
we all came out, you know, pretty normal.
(11:38):
And he just got very serious and said
to me you're very lucky you know
it's it's very dangerous to not only
to the the fetuses but to the mother as well and you know it's it's my job to
help you get pregnant but also to do it as safely as possible it was really
(11:58):
eye-opening for me i hadn't had never thought about it that way wow crazy and
you feel like i think you said earlier that
the so i don't know much about epilepsy
my biggest source of information about that is
your book so i mean i i know that stuff and i'm aware of it i just don't know
you know a tremendous amount about it but i'm super interested in learning about
(12:21):
it but it sounds like you said that you feel like your chances of that were
increased from the triplet situation is that Did I hear that right?
So I wouldn't say it exactly like that.
And, you know, any scientist or doctor, not that they would bristle at that,
(12:43):
but, you know, there's no way to prove it.
It's just there's a very large percentage of people that have epilepsy that don't know why, right?
So, you know, the common causes are traumatic brain injury, you know,
those types of things, some sort of injury to your brain or,
you know, something else, you know, catastrophic has happened to you that's triggering seizures.
(13:07):
In my case, you know, I was living a pretty normal life for 30 years and then
suddenly out of the blue started having seizures.
And so, you know, I think it's just really challenging when something like that
happens and you don't have answers, right?
It's just this question of why just was really challenging.
And so, you know, as we kind of talk through it, I think my mom actually came
(13:32):
up with that explanation first.
And I, you know, talked to my neurologist about it and he said,
listen, it's plausible.
We'll never be able to prove it, but it's plausible. So...
You know trauma in the womb is sort of the term we
use right again you have three babies in a really small person's belly
bouncing around off of each other and you know other
crazy things going on in there so who knows otherwise i
(13:55):
just you know have no other explanation looking back on
it you said it it struck at 30 for you was there
any indications that you
may have glossed over
or been ignored or been unaware
of that's that may have
indicated something earlier on yeah you know i've i have racked my brain on
(14:18):
that question so many times and i just can't think of anything yeah you know
again that's yeah i've just i've gone through that mental exercise so many times I just,
I can't find anything in my past that would point to it.
I wish that I could, but yeah, I haven't.
(14:40):
So at 30, what happens? Like how does what you have, walk me through the beginning
of understanding that something's going on here.
Yeah. So at 30, I was, I was a workaholic and it was late at night.
I was working at my desk in my, in my apartment in Washington,
DC. And the next thing I know, I'm waking up slumped over against my bed, which abutted my desk.
(15:04):
And I was confused. I didn't know what happened.
But I just sort of chalked it up to, okay, I'm really tired and working like crazy.
I mean, I was working 60, 80, 100-hour weeks at times.
And I just got in bed, fell asleep, woke up the next morning.
And I was in a meeting with my primary client who was sitting across from me in an office.
(15:29):
And the next thing I know, I'm waking up in an ER.
And as he recounts it, we were talking and in the middle of the conversation,
my eyes rolled back in my head.
My head fell down, hit the table.
I fell down on the floor and started to shake a bit. But at that point,
the doctor still wasn't sure what was going on, didn't diagnose me with anything.
(15:54):
Just, you know, sometimes the body does weird things and sometimes we just need to reboot.
So it was sort of like, let's keep an eye on this. But, you know, there's no diagnosis.
And then about a month or so later, I was on a work trip to Ottawa.
Yeah, I think this is the great story from the book where you passed away, right? Is that it?
(16:17):
Exactly. So I was doing a lot of work with the State Department at the time.
And I was at the American Embassy in Ottawa with a colleague sitting at a conference
room table with a bunch of State Department employees.
And again, next thing I know, I'm waking up in an Ottawa ER room.
And unbeknownst to me at the time, but later I learned from my boss that,
(16:39):
so at the time I was working for Accenture and they had a group called Accenture Security Operations,
which is the group that is in charge of people that are traveling overseas.
And so she would speak to this group all the time, but this time they called
her and literally said, John Tudor passed away.
Way and she was you know
(17:03):
obviously shocked yeah wow yeah and
she she then called my colleague who
i was traveling with and you know she said no you know john didn't pass away
he passed out oh out away big big difference there yeah yeah so you know and
and we're we're in ottawa you know where they speak english so you can't even
(17:24):
blame it on you know translation from one language to another,
I'm not exactly sure how they got away and out, confused there,
but there's a big difference. Yeah, big difference, yeah.
So yeah, at that point, the doctor,
based on what was described to him and how I was acting after I woke up,
(17:46):
diagnosed me with epilepsy,
gave me Dilantin, which is one of the oldest anti-seizure medications out there,
and before I could even ask him any questions, he just kinda left.
And that was really, really difficult because that was not anything that I was prepared for.
(18:06):
And that began more than 500 seizures.
Countless medical tests 40 over 40 days and nights in the hospital three brain
surgeries 15 hole drilled my head i mean on and on just the craziness that's
occurred since then yeah do you think the holes in your head contributed to the white hair at all.
(18:27):
Is that possible i mean for sure the stress of holes in your head would would
do something but i don't know if the actual drilling yeah you know we're gonna
go with that i like that that's it's It's my neurosurgeon's fault that he drilled
all those holes to make all of my hair white instead of gray.
Yeah, it's a pretty amazing journey. You walk through all those holes and the
(18:50):
surgeries and all those things in the book.
And it's really pretty fascinating and quite a journey.
I guess in layman's terms, what is epilepsy?
So it's multiple occurrences of seizures, which are, which is electrical activity
in your brain that fires abnormally that sort of lay person's term.
(19:13):
If you know, if we had a epileptologist on here, he or she would probably correct
that in somewhat deeper form, but in lay lay layman's terms,
that's essentially what it is.
And where this gets complicated is
there are over 30 different types of seizures you know
so most people think oh seizure grand
grandma seizure epilepsy grandma seizure right you you lose
(19:36):
consciousness you shake that's that's that was my knowledge
of it was a grandma seizure yeah yeah then
that's that's really what most people know that's all i knew
before this happened and you know
i've definitely had it's the the medical term
for grand mal seizures tonic-clonic seizure I've had many of those but the majority
(19:58):
of the seizures I've had are what's called focal onset aware seizures those
are I actually don't lose consciousness I'm awake.
And there's really three phases and they detail this in the book.
The first phase is a really awful, nauseating smell, which I'm not going to
(20:20):
go into the specifics around that now. I do it. I appreciate that. Yeah.
So hard to explain, but just this really bad smell. And then this is the craziest
part is it's so so so the term aura, I think, is common to people.
Right. You know, people think aura, deja vu.
I did a lot of research on this. Deja vu is not really the right term for what I experienced.
(20:43):
It's really more of a flashback because it's as if my brain is playing a movie
or a scene from my life that has already happened.
So I'm transported back to some place in my life 10, 15, 20 years ago.
It's already happened. it's the strangest thing and it's like the same set of
(21:05):
like five six seven scenes every time this happens so I so the movie plays and
then I get really sweaty like on my hairline and my back the nausea continues to increase and,
then then it ends how long
what's the duration of that it's it's
(21:26):
pretty short a couple minutes at most okay and do you know immediately what's
happening or is there some sort of trigger that lets you know it's happening
or you're just in it before you kind of know what happened yeah i mean it's
really the smell and and the aura that the beginning of that.
Notifies me for sure you talk about the bees too this buzzing type thing that happens.
(21:51):
Yeah so i have a i have so what i really wanted to do among other things in the book is to make,
epilepsy more understandable for people because
it is so complex and the brain is so complex there's still so much we don't
know about it and so i i came up with this this b analogy to kind of make it
(22:13):
you know make it easier for people to understand so so there's a lot of,
comparisons to how bees operate and how the brain operates.
And yeah, so that theme kind of, I carry that throughout the book and reference that throughout.
So hopefully people will get that as they read it.
(22:36):
Sorry, how many people have epilepsy in the US?
One in 26 people, which I think when most people hear that statistic,
they're shocked, right?
That's not an insignificant amount.
No, it's not. It amounts to about 65 million people worldwide.
So chances are that your listeners, every single one of them knows at least
(23:03):
one person with epilepsy.
They just don't know it because so many people just don't talk about it.
And that's another reason why I wrote this book and why I wanted to come on
your podcast and other podcasts.
I really want to talk about it. I want to de-stigmatize it.
I want to make people really understand what it is. is, and I've shared this
(23:24):
story before, I'm going to share it again.
I met a pediatric neurologist in 2021 at the Epilepsy Foundation Conference.
And he was telling me a story about one of his patients that came in for an
appointment with his mother.
And the mother, during the appointment, looked at him and said,
we're taking little Davey to church this weekend for an exorcism.
(23:48):
And doctors like no no no
no no no because he
has epilepsy and is experiencing seizures does
not mean that he's possessed by the devil and again this is
2021 in the united states there are still people that believe that you're possessed
by the devil so frightening but true so i'm just trying to trying to shatter
(24:11):
all those stigmas and and show people that yeah you can you you can still live a great life.
It may not be exactly the life that you planned or that you wanted,
but you can still live a great life.
Yeah, I think a term that comes to mind as you kind of described that is it's
hidden or people don't really know about it. It's invisible disability.
(24:33):
Yeah. Which is something I know a lot about.
There's some things in my story in my life that are unique about me that are mostly invisible.
To anyone that doesn't really know much about me.
And sometimes those things, you know, I can't imagine particularly at your age
(24:55):
of 30 or during the early stages of your diagnosis or journey into epilepsy.
Like you're feeling like this can happen anytime.
You don't know what's going to happen or when it's going to happen.
And a lot of stress around that.
And that happens with, I think, people that have these different disabilities
or abilities that make for some awkward or unique, for sure,
(25:20):
in-person interactions.
And I think the more we talk about those kind of things and de-stigmatize all
of them, people have a better understanding for what goes on there.
Totally. Yeah, your journey with meningitis certainly falls in that category.
Invisible and not many people understand it. okay so how many brain surgeries
was it again three three and only 15 holes.
(25:45):
Right only yeah cool okay yeah
you you do go through a lot of that stuff in the book and it's pretty amazing
i i don't know what that must be like but the book title it's seizing today
i don't know the subtitle i don't have it in front of me do you have do you know when it's
(26:05):
coming out sometime later this year or the summer or what sometime this summer
is the latest that i've heard from my from my publisher so hopefully that that's
okay and for future people listening that would be the summer of 24 in case
you're listening in 2030 or 3015 or whenever that is.
(26:26):
And the subtitle real real fast i can give that to you discovering purpose and
authenticity in a life-changing diagnosis.
Yeah, that's great. Yeah, I can relate to that.
Exactly. Talk a little bit about kind of what that means to you. Yeah, you know...
I always enjoyed the work that I did prior to this.
(26:51):
I felt like I excelled. I did all the things I was supposed to do,
quote unquote supposed to do.
But it just never felt right. And the way I describe it is there was always
sort of friction around it.
And when I finally decided to pivot my career, that's when I started to realize
(27:14):
there are things we can do that are our superpowers.
And that's what I'm doing now with my executive coaching work and facilitation
and speaking and writing.
These are all things that I pinch
myself in the morning that I get to do them. I love the work that I do.
(27:35):
And so that's really what it's about. Like I just feel so much more authentic
and have a, and live a purpose driven life, quite frankly.
Like I, I clearly know what my purpose is and why I was put on this planet.
Like that, I know that sounds maybe a little bit hokey. No, I love it.
Cause I, yeah, I got it. Or, or, or spiritual, but you know,
as my, my editor told me, you're very spiritual, John. I was like,
(27:59):
no, I'm not. He's like, yes, you are.
I've read your book. I've edited your book. You're very spiritual.
I'm like, maybe I need to think about that some more. You're right.
So yeah, I'm just a big believer in we're all put on this planet for some reason or reasons.
And it's up to us to sort of figure out what those reasons are.
And when we do, it just feels right. And so that's kind of, I was able to get there.
(28:26):
Yeah, that's a tremendous feeling. Congratulations on that. That's got to be great.
I'm hoping to get there someday myself and
and reading the book I feel like there's and I might be reading
too much into this here but I feel like there there's a
because it's true for me that there's this amazing connection with your wife
Julia that kind of you know I don't I don't want to put words in your mouth
(28:50):
but I feel like there there was a time you kind of chronicle the Which is a
great meat story that you guys have.
But you're kind of...
Nervous about bringing these things up initially with her and then once it happens,
(29:11):
like it's just great and it all makes sense and i've i've experienced that myself
personally in my life so i can really relate to that and i think i just think
that's incredible yeah i mean i'll i'll never forget just you know it's one
of those things i was worried about it and dating like Like,
how am I going to explain this to someone, right?
(29:33):
And I'll never forget, it was, you know, a lazy Sunday morning.
And she leans over to me and says, tell me a secret.
And, you know, sort of flippantly. And the only thing I hadn't told her was,
you know, that I have epilepsy.
And I just kind of blurted it out. and she just was so
(29:53):
incredibly understanding and supportive and curious and
all the things that i needed and you know
nothing has changed ever since she's just as she's
incredible wouldn't be able to get through all this with without
her so i i don't know how i tricked her into marrying
me i can relate to that too yeah
i definitely married up my my
(30:16):
game and she made you a girl dad which is
awesome i'm a girl dad too so you know
that's i mean i don't know that i
recommend it for everyone but it's certainly
a a fun way to do it it's it's great it
is it is and you know one thing i i you know
i put this in the book and i say this anytime i can but i never
(30:37):
i never imagined that i could love my kids as
much as i do like it just it's sort
of mind-blowing when i I when I'm with them you know you you love your spouse
and your friends and your family a certain way but your kids it's just it's
a totally different kind of love yeah and it really catches the other blue once
I mean when it happens it just happens I can remember when that started yeah and it's great.
(31:03):
Back to music real quick, if I can, since you made me think of this.
Another one of my favorite bands is Chris Stapleton. And he has a song called Joy of My Life.
The words to it are incredible. But I said to my older daughter,
why don't we dance to this song together at your wedding?
She's like, Daddy, that's not my favorite one. How about starting over?
(31:29):
Okay. As long as it's Chris Stapleton, I'm good. Yeah, that's pretty amazing.
I'd get that in writing or take a video of that just so you have documented
proof that that's what it's going to be.
But, yeah, man, I don't know. I don't want to think about a wedding, though. Oh, my gosh.
Oh, man. A little far away. Yeah, I hope it's always real far away, actually.
But I feel like it's going to be here before we know it. So, gosh.
(31:51):
Probably. All right. Okay, so epilepsy mostly controlled now?
All the surgeries and things?
Where are we today with it? Yes, the third of the three surgeries was about two and a half years ago.
And other than one episode, I've been seizure free.
And the only reason for that episode was I, it's a long story,
(32:13):
but forgot to take my medication.
So since I've been on medication, have been seizure free since that third surgery.
So that's a huge, huge win.
At one point I thought, hopefully I won't
ever have to be on medication because anti-seizure medication
doesn't have the most fun side effects but in
talking to my neurologist uh it's very rare that people
(32:36):
would go off medication entirely we've we've titrated down a little bit on one
of the two medications that i'm on which is helpful but anyway to answer your
question yeah i'm doing great i really am and and there'll be advancements in
the future that that will improve that hopefully I know you do a lot of work.
You mentioned a group you're with. Is it Epilepsy Foundation or something? Yeah.
(33:03):
Yeah, so I do work with a couple. So there's the Epilepsy Foundation of America,
and that's the group that I got involved with pretty much right after my diagnosis.
And then more recently, I've been done a fair amount with CURE Epilepsy,
which is an acronym that stands for Citizens United for Research in Epilepsy.
I was founded 20 some odd years ago by Susan Axelrod, who also happened to write the foreword to my book.
(33:30):
And I'm so thrilled and touched that she agreed to do that.
And I finally actually got to meet her in person last weekend in Chicago at
their annual gala. And that was quite a thrill.
So yeah, I really, giving back to the community has always been an important
value that was instilled in me for my family and continues to be really important.
(33:52):
Awesome. All right, John. So the book is forthcoming.
Where's the best place to find you and or the book or things about that out there in the world.
Yeah. So by the time this is published, johntutor.com should be live.
And that's a place where you can order the book, learn about what I do, etc.
(34:13):
But certainly, you'll be able to buy the book on the typical places,
Amazon, barnesandnoble.com, all those kinds of places.
But johntutor.com should be the easiest place to get ahold of me.
Also, my LinkedIn handle is Jonathan-Tudor.
Posting there pretty regularly about my journey, my story, the pictures and
(34:35):
images from the different post surgeries that are kind of shocking and striking.
So that's another good place. I also post to Facebook. I am not,
unfortunately, not an Instagram person, although I know I probably need to be
or should be, but primarily Facebook and LinkedIn are where I am from a social standpoint.
All right. We'll link to those down in the show notes too, Jonathan.
(34:56):
Or John, I don't know which one to call you now, but it's been a lot.
It's great to connect with you here and looking forward to the release of the
book. Likewise. Thanks, John. Really appreciate it.
Thanks so much for spending your time with the Destiny is Debatable podcast.
Please rate and write a review wherever you subscribe. It really does help us
(35:17):
grow and reach new people.
For more information, visit johnbgrimes.com.
Destiny is debatable is a production.
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