March 24, 2025 • 52 mins
What happens when ordinary deja vu becomes something far more complex? In honor of Epilepsy Awareness Day, join us as we uncover Emma's extraordinary journey with epilepsy, a condition she was unexpectedly diagnosed with at the age of 23. Her story is a testament to resilience as she navigates through the labyrinth of symptoms and misdiagnoses, revealing the often-overlooked intricacies of living with epilepsy. Emma's candid recount of a pivotal episode in Sri Lanka and her subsequent advocacy work offers a compelling look at the need for greater awareness and understanding of neurological conditions.
Emma's experiences paint a vivid picture of the emotional terrain that accompanies chronic illness. The gap between personal reality and public perception is stark, where "I'm fine" often masks a complex struggle. This conversation sheds light on the critical need for empathy and a deeper understanding of those living with chronic conditions. By sharing her personal experiences, Emma hopes to bridge the disconnect, offering insights into the hidden battles that many face and the importance of fostering a supportive community.
Art becomes a beacon of healing and expression for Emma, transforming her journey with epilepsy into a creative force. Her venture into illustration and storytelling is not only a means of personal acceptance but also a way to connect with others facing similar challenges. Through her work and collaborations like "Beyond the Ordinary," Emma champions resilience and neurodiversity, highlighting the profound impact of creativity as a tool for coping and building community. Tune in to explore how personal struggles can redefine success and lead to a powerful story of growth and empathy.
https://linktr.ee/byemmadearling
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jen (00:00):
Welcome back to my Spoonie Sisters, and today we are
thrilled to welcome Emma to mySpoonie Sisters.
Emma is an incredibleillustrator and advocate who
uses her creativity as apowerful tool for healing.
Diagnosed with epilepsy at 23,she has channeled her journey
into art, therapy andself-discovery.
(00:21):
Emma is also a personal trainerand co-author of the number one
bestseller Beyond the OrdinaryDiscover the Power of Creative
and Neurodiverse Women.
She's here to share her story,talk about raising awareness for
epilepsy and explore thediverse coping mechanisms that
she has embraced.
So let's dive in and learn moreabout her inspiring journey.
(00:44):
Hi, emma, and welcome.
How are you today?
Emma (00:47):
Good, thank you.
I think to go off on tangentsand forget the question, so this
could be interesting it can beinteresting, but you know what?
Jen (00:56):
I'm here for it, and I think Andy is too.
We're excited to chat with youand hear all about you.
Do you mind telling us yourdiagnosis story?
Emma (01:04):
I actually got diagnosed at 23.
I think I actually had epilepsymaybe a year or so before that,
but wasn't aware of what it wasbecause I've only ever thought
of epilepsy as one kind of thingin a very ignorant sense.
I was very ignorant of my owncondition because I didn't know
that there were so manydifferent types of seizures.
So when I was diagnosed I hadlike a buildup were so many
(01:25):
different types of seizures?
So when I was diagnosed I hadlike a build-up over quite a few
years of having these littleweird moments, I would say,
where I would be at work orsomewhere familiar, and I feel
like I'm having deja vu whichsounds like a really like oh,
everyone has that, but it's thedifferent level of deja vu.
And I thought, oh, it'sprobably because I've been here
before.
It's a different level of dejavu.
And I thought that's probablybecause I've been here before.
(01:45):
It's a bit strange.
And then I kept having someweird things going on in my eyes
and I was like it feels a bitodd.
So I went to the dieticians andthen they did a check on my
eyes but your eyes got something.
Something's a bit wrong.
So we're going to send you toback to the doctors, and the
doctors are going to refer youto the hospital, and this goes
back and forth.
Long story short, that wasn'tanything.
I was still like, well, what'sthe problem?
(02:06):
Then I was like these thingsare still happening and it's
still really bothering me, likecan I have another opinion?
So I went back to the gp and hesent me to a neuro neurologist
oh, my god, I can't evenremember his name, um and he.
He didn't get back to me untillike nine months later, because
the waiting list is so long,obviously because of the nhs.
(02:30):
It's um, well, you get seenwhen you get seen, and if it's
not that important, as in, I'mnot like a kind of person that
would drop to the floor, havefits and hit myself or anything
so I was low risk at that stage,went into that appointment with
my mum first five minutes I wasin there he diagnosed me like
(02:51):
likethat and all I remember him
doing is looking into my eyeswith a telescope, one of those
weird I don't even know whatthey're called things.
He took my knees and he wasseeing my reflexes and then he
goes yeah, you've got epilepsy.
This is after me saying thesymptoms and I thought what do
you mean?
I was like I don't haveepilepsy, I definitely don't.
(03:11):
I don't drop to the floor oranything, I just feel a bit
funny.
I thought I was just gonna thengo home and tell me you need to
do some like meditation orsomething, as in.
I wasn't expecting you've gotepilepsy.
It was like what the leading upto that is, in the nine months
that I was waiting, when I wentto Sri Lanka after I'd graduated
from university, I did thetypical oh my god, I'm gonna go
(03:34):
like help and be a volunteer inanother country, because
apparently that's what allBritish people will have to do.
So went, I went to Sri Lankavolunteered with a friend.
It was there that I was moreworried than I'd ever been,
because every other time I'd hadan episode of deja vu.
I was in a place that I'd beenwith before, around people that
I'd known, so I thought it'sjust deja vu.
(03:56):
That was the time that I was ina country I've never been to,
surrounded by a group of peoplethat I've never met, and I
thoroughly had a meltdown andpanicked.
I was like, oh my God, thisisn't right, something's not
right, really not right.
I went full panic mode,sweating, freaking out, had to
be taken away from everyone, satdown like are you okay?
(04:18):
I was like I don't know.
It lasted for a good five to 10minutes and then I was fine,
wait for a good five to tenminutes.
And then I was fine, wait forhospitals out there.
They said, wait till you gethome.
You've got, like, anappointment, it'll be okay.
Then, obviously, nine monthslater, they're like yeah, that
was, that was a seizure, youwere having a seizure.
I was like, oh, I didn't knowthat was a seizure.
They're like yeah, there's 40plus different types of epilepsy
(04:41):
and they do not look the same.
Everyone thinks of just the one, because that's the one where
you mostly get hurt.
Obviously you have to thinkabout how to make sure you're
safe.
The deja vu one didn't add upto me because I'd never heard of
it.
And why would?
I was completely oblivious tothat, even being a thing with
any condition.
If you'd never heard of it, whywould you know?
(05:01):
I found out when I was 23 andeverything kind of went a bit
downhill from there.
Not gonna lie, I was veryoverwhelmed with the diagnosis
because I'd been driving since Iwas 17.
And that day they had to takeaway my license.
So the independence of myselfwas kind of lost.
I was like how am I going toget to work?
(05:23):
How am I going to do this?
How am I going to do that?
I was very much like, but I'vealways been very independent as
a person.
I drove to and from uni all thetime, even though it was an
hour and a half drive forEngland.
That's really far, by the way.
I feel like it's not the samein Morocco.
Um, it was, and I always drovemyself to work.
I did my own shopping, I livedwith my parents, but I still did
everything for myself and Ifelt like I was back at school,
(05:45):
being like mum, can you take meto work?
I was like I feel like a child.
I hated it.
That was a bit of aspiring intolike depression, anxiety,
things.
So then started with medication.
Ironically, since I wasdiagnosed, the epilepsy got
worse.
Then I did start to haveseizures where I collapsed.
One of the most memorable oneswas my boyfriend and I had just
(06:05):
been to the gym.
We left and he was about todrive me home to be at home by
myself, which is why I was it'sa bit scary and went to get in
the car and he was like are youokay?
I was like no.
He said that's the first timeI'd ever said no, because I
normally go no, no, I'm good.
I'm good like because I'll justtry to brush off and it's fine.
You know, whatever, there Iwent, no, it's like he went like
white as a sheet and he wentaround the car to catch me or
(06:29):
ask us okay.
I completely dropped to thefloor, said that my legs went
like stiff.
Sounds horrible.
Impression is not a nice oneall I remember was saying no.
I remember having a dream aboutunicorns, which is hilarious, I
think, because I was there likemy own little bubble, completely
unfulfilled, having a greattime.
Unicorns which is hilarious, Ithink, because I was there like
in my own little bubble,completely unfocused, we're
(06:49):
having a great time.
And suddenly I hear Emma, we'rehere, emma, okay, can you hear
us?
And they go sir, am I having anap?
Completely disassociated thesituations with each other.
I woke up to the ambulance teampar tea, paramedics around me,
my boyfriend there.
They're going hold up, what areyou doing?
I said, oh no, you don't.
You didn't need to call them,I'm fine.
(07:09):
He's like no, you're not, youjust dropped to the floor.
I was like, yeah, but thatsometimes happens, it's fine,
like it's not over five minutes,you don't need to call anyone.
He was terrified because he'dnever seen me actually have a
seizure in person.
I think for him it's more likethe panic of that and he had the
first thing he thought to do,which is perhaps a thought
straight away.
Luckily they were about fiveminutes down the road.
(07:30):
It's just lucky they were there, because otherwise that would
have been like a couple of hoursand I would have recovered, as
it were.
They checked my bloods and dideverything and I said I'll speak
to the.
They're more worried about himthan they were about me because
he looks so shocked at seeing meso vulnerable and completely
unresponsive that he wasterrified.
(07:51):
He was like I've actuallythought you might have died.
And then he was like, but thenyou were moving.
So I was like it's fine.
So I ran inside and so hetripped over the step gate into
the house because he waspanicking.
I mean, bless him, he wasabsolutely brilliant.
But I was like, do you want totake him into the hospital or
not?
Me like, it's fine, I was just.
It was just very awkward.
The reason.
I remember that.
So that's the time I realizedbecause you physically see it,
(08:13):
how much my diagnosis affectedother people.
Because I don't see it, Ididn't really think anything of
it.
I sound, not anything of it.
There were a lot of emotionalattachments and things like that
.
Physically, seeing him likethat freaked me out because I
was like, can I actually lookthat bad?
Like does is it really that bad?
Because I don't.
I'm there going, I'm asleep.
Basically it feels like, andthen I wake up.
(08:33):
That's just that hole inbetween the stuff.
Yeah, so that's happened forlike a number of years or
whatever, but that was obviouslyquite two years in um question
was that?
How do I get into illustrationfrom that, wasn't it?
Jen (08:48):
yeah, but I want to interject for just a second.
I think in andy I don't know ifyou have any experience with
this as well, but I think if, ifyou're experiencing it yourself
and of course this depends onthe kind of seizure right, you
don't see what you look like,you don't see what's going on,
and so for those around you likelike he was absolutely
(09:10):
terrifying, absolutelyterrifying.
They're not used to seeing youin such a way.
Emma (09:14):
It just kudos to him for not falling flat on his face,
you know I felt also because, um, he I'd spoken about it and
he'd never seen it.
It was almost like just a thing.
It just didn't matter.
Not didn't matter, but ithadn't been a thing in our
(09:35):
relationship because at thatpoint I think we'd only been
together like a year or so.
I remember the first date wewent on my mum said tell him you
have epilepsy in case somethinghappens, picked me up in his
car and I said just to let youknow I have epilepsy, so if
anything happens.
It's a bit weird.
He's called my mum.
I showed him like my phonething.
I was like I know, what if thathappens?
(09:56):
it happens because I was veryopen about it.
It was only till about a year,two years in, he'd actually seen
me have a seizure where Icollapsed.
I think that's why it was sucha shock, because he's seen you
so normal, whatever that means.
It's been a very weirdexperience for him to suddenly
see me as this really vulnerableperson.
It's very difficult, um,because obviously we built a
(10:18):
relationship over that time andit wasn't just like going on a
date one time doesn't matter.
It was like fully invested inrelationship and he's like, oh
my god, now I realize howterrifying it is.
This is, whereas if I said thaton the first date and I'd had a
seizure, he'd probably been like, no, no way, because it is
terrifying and it's not reallynice.
Well, you don't really have todispose it.
(10:40):
You don't have to do anythingyou don't want to.
But I can't lie to people andit's such a massive part of my
life now that I'm like it iswhat it is.
If you like it, you like it oryou have to like it, but it is a
part of me and I've acceptedthat.
Jen (10:55):
Definitely it's a part of who you are.
If people want to be part ofyour life, they need to accept
all of who you are.
Andy, do you have anything tochime in?
I?
Andi (11:03):
do you know I like to throw the monkey wrenches in
early.
I have a question, because Iknow that our people that care
for us, they freak out whensomething happens that they
haven't normally seen orexperienced.
And we live it.
Do you think perhaps maybe theboyfriend perhaps were freaking
out because he was so used toyou, seeing you fine as a
(11:23):
description, I'm fine.
But what that fine really lookslike?
You know what I'm saying fineto us, I'm fine.
We use it all the time.
But fine to us, in the bigscheme of things, really isn't
fine to the average person.
It's just our everyday norm.
So if they don't live a lifewith chronic illness and they're
(11:44):
just the supporting cast, Ithink it freaks them out.
Because what does fine reallyactually mean for real If we're
like no, I'm fine, it's fine,it's fine.
Whatever.
The doctor's office was trash,disappointment was trash, but
it's fine.
I feel like garbage, but it'sfine.
Ouch, that hurts, but I'm fine.
Oh no, I've had a full blownseizure.
I took a nap though.
Hey guys, why is everybodystaring at me?
(12:06):
It's really fine.
And he's like well, wait aminute.
You've been fine all theseother times and it did not end
up with you on the floor.
This time, fine, lookeddifferent For me.
It was my heart attack.
Mine was hey, I'm fine, I'mfine, I'm fine.
And then bam, whole cardiacarrest.
That's it, dead, dead, dead 38minutes.
I told people that day I wasfine.
(12:27):
I had literally just toldsomebody I was fine, I wasn't.
I was overwhelmed, my chesthurt, I hadn't slept, I was in
the middle of a flare and then Iwas dead, dead, craziness.
Emma (12:45):
That's quite massive.
Also, I love the way you justdescribed it as, uh, like
they're the co-supporting actkind of thing to us.
I think that's a reallybrilliant way to look at it,
because you are kind of the mainperson of your life.
I think it's quite good toremember that.
You don't have to cover that.
Just make sure everyone else isfine, like they're the main
part of the show, like you arein your own life.
Ironically, when I talk aboutthat time, I genuinely was fine.
I think that's what scared metoo, because normally if I'd
(13:06):
have a flare-up of seizures, itwould be because I was really,
really stressed.
I'd be having slept or I hadn'ttaken my medication.
I'd done all those things.
I'd also eaten, drunk enoughwater and gone to the gym.
I genuinely felt fine and Ithink that was the shock.
If I'd had a focal seizure iswhere I don't know if you know
what focal seizure is, but forthe purpose of this is when you
(13:30):
are fully conscious but youstill have the feeling of deja
vu, as it were.
You kind of.
For me, I personally becomemute and it can be known as an
absence seizure, but it'sdependent on what part of the
brain.
I'm a neurologist, so don'tquote me on that.
If I'm having a focal seizure,I'll just go, and if someone
(13:53):
says anything to me I'll justsay if you know me, that means
I'm not good.
So he'd seen me with those kindof seizures and they'd never
built anything like that wherehe'd been present.
Normally for me at that timetime a focal seizure would then
turn into a seizure.
I'd collapse.
So I was.
It was more like the pre-panicbefore the actual show and I'd
(14:13):
be like really so I think that'swhy I would get so panicky now,
because it's been a few yearslater when I I don't have the.
That's a whole other story.
It's it's like so he, he'd knowif I hadn't slept and I've been
tired, I'd be like if I had afaux procedure.
I'm going to bed, I'm notrisking this, I'm having a nap.
I don't want it to get to thatpoint.
But it's interesting, like whereyou said that you can say
(14:35):
you're fine when you're reallynot fine, because it's a full-on
masking thing.
You pretend like everything'sokay.
You don't want to make eitherother people feel uncomfortable
or to get in your own head about.
Am I going to cause somethingif I think about it too much, or
am I going to get too wound upand then that in itself is going
to like cause some kind ofstress.
It's going to cause, like in mycase, have a seizure.
(14:57):
For your case, have a heartattack, which is like very
extreme.
And for people that don't havelike a chronic illness or
anything like that, they're like, how did it get to that point?
Like you should just calm downor you should just whatever.
And you're there going.
Yeah, um, I don't know how toexplain it unless you've been
through it, because it's notlike you're doing it on purpose.
(15:20):
You're not there going.
You know, I really fancy goingto hospital today.
I would really love a trip.
It'd be great.
You know what?
I really just want someone to.
Just I'll lie there and peoplebring me food while I feel
absolutely rubbish.
It's not that it's they'regoing.
Just just make sure it goesaway.
Just don't panic about it.
You're fine, you're fine,you're fine, you're fine.
And it's like the constantreminder in your head.
(15:40):
You'll see, people do say thatmind overmatch or whatever, but
in some cases it doesn't.
It only works to a certainextent.
It's, it's just, it is what itis.
You can only learn to cope withthat and the after effects and
dealing with that in that sense.
So that's very overwhelming attimes.
What I'd say I think I'vestruggled with the most is
(16:00):
learning to cope with that andto allow myself to, instead of
bullying myself for not livingup to expectations of my
previous self or of other people, which is a hard task to last.
Jen (16:14):
Really definitely, you explained it really well.
Sometimes we think we'retotally fine and we start out
the day fine, but it might notend that way.
We need to pay attention tothat and regroup ourselves
throughout the day to see wherewe're at and make sure we really
are fine.
But it might not end that way.
We need to pay attention tothat and regroup ourselves
throughout the day to see wherewe're at and make sure we really
are fine.
But then again sometimes thatthat un-fine feeling comes out
of nowhere.
What's the backup plan for whenthat happens?
We need a backup plan.
Emma (16:35):
I also think with that kind of things, I've grown to
understand my condition.
I've learned how I can copewith it, as in initially I'd be
trying to push myself in thesame sense of trying to do
everything I used to do andhaving that expectation of
myself, and now I know what Ican and can't do.
I've had the trial and errorexperience.
(16:56):
I know what works and whatdoesn't work.
I've also tried differentmedications and all that kind of
stuff, but it's more of the uh,understanding yourself better.
It's like relearning how youwork and relearning how to adapt
to what actually is good foryou, and what used to be good
for you might not be good foryou anymore.
Or you used to like do all thetime, like even working how many
(17:20):
days a week, or being awake forlike certain amount of hours
and not needing as much sleep orthings like that.
You have to learn.
Okay, is this worth having inmy head?
Is this worth having a seizurefor I'm going?
No, it's not worth it.
If I'm worried about it, it'sin my head.
I'm panicky, I won't dosomething.
However, it's also, then,learning to cope with the not
(17:42):
getting your head so much.
You're going, you're actuallyfine.
You just need to make sure thatyou feel secure or safe and not
do as much up to the buildingup to that thing.
Try not to worry about it asmuch, which is easier said than
done.
People say, no, just don'tworry about it.
But it has to be you thatgenuinely feels like you don't
worry about it, because it's notthat simple.
(18:02):
It's just really getting toknow yourself again, the whole
new version of you.
It definitely is different forpeople that have been diagnosed
since birth, because that'stheir norm.
It's not that that makes it anyeasier.
I'm not disputing that.
I'm saying that when I wasdiagnosed, when I was 23, I had
a norm and then the norm hadjust gone.
I had these expectations ofbeing back to where I was.
(18:24):
That really shook me.
Used to be able to do like.
You can't do that, but you usedto be able to do that.
And it's the, it's the missingand longing to that old,
healthier version of me whichwas um, uh, you know it's been a
tough pill to swallow.
It's um, I think I'm, I'mgetting there and I'm definitely
a lot further down the linethan I was.
It's a positive, that is apositive.
Andi (18:48):
What would you say has been the most difficult and the
most fun part of you datingyourself, to rediscover you.
We kind of sit in the hey, thisis my new, my normal has
changed.
But then it's like theexploration phase of what I can
still do these things.
What has been the most funthing that you've discovered
(19:10):
that you can still do?
You just learned how to dodifferently.
And then what has been the mostchallenging part of learning
you to date you so that you canfeel safe with you all the time?
Emma (19:21):
the way you've worded that , the whole aging yourself again
.
I've never thought of it inthat kind of way and that's a
really lovely way to kind of putit, because it is learning
about yourself and you aredating yourself.
It's a whole new feeling.
The the thing that has been themost positive is that, um, I've
(19:42):
started my own business and Iwouldn't have done that unless I
was really pushed to do it, todo it, and I was thinking that
would be me.
A lot later on in life, afterI've had kids and after I've
worked for someone else and doneall that, I was thinking, yeah,
that'll be the good time.
I'll do that then, because I'vealways wanted to work for
myself.
But because life became a lotharder and it was a lot it's not
(20:06):
very easy to find a full-timejob that allows the people that
have epilepsy no matter whatthey say, I always know the
answer is because you can't fitinto whatever they need from you
at that particular job.
I've been pushed to do the thingthat I always wanted to do a
lot sooner, and I'm quitegrateful for that, in a way,
because I've learned more aboutthat now, so I actually have a
(20:29):
lot more knowledge for thefuture in terms of that and also
found out that that's somethingI really thrive in doing and
also it's incredibly calm, soactually helps with coping.
So I think that has really kindof come together in some kind of
a fate way which I wouldn'thave expected.
Really, and if I had done itwithout having epilepsy, I don't
(20:50):
think some of the stuff Icreate well, it wouldn't have
been as informed or.
But I thought it's more of apurpose now because I have a
message to give and a story totell, whereas if it was just
like I wanted to become anillustrator, it's like here's
some nice pictures.
Let's be honest, that's still ahard job.
It's quite hard to keep up with, you know, the market or
whatever, and that stuff I dostill enjoy, not disputing that.
(21:12):
But it's the fact that I nowfeel that when I've done
illustrations based aroundepilepsy or sharing and kind of
helping to educate through thedrawing or whatever, I get
messages saying from onInstagram saying I've I
experienced that I'm so glad youshared that so many people
share the illustrations andhelps me me feel not so alone,
(21:33):
the fact that I've had otherspeople feel not so alone.
Andi (21:36):
It's way more rewarding than just a nice picture do you
think it's because now, when youdo it and it's like awareness
driven you are creating from aspace of acceptance and it is
being received in a space ofacceptance and you feel safe.
So I can do this all day.
This does not feel like work.
I am calm, you're remindingyourself you're safe because
(21:57):
it's your journey, but it'shelping to educate other people
that may be along the way.
I think it's beautiful thatthere is acceptance of us along
the journey as we meet thepeople in our community.
When we were scared to speak upat first, to go, hey, I have
this thing or this may be goingon, we were like I'm fine, it's
(22:19):
fine, I have this thing.
It's like our dirty littlesecret, but it's not really a
secret, but don't look at medifferently.
And then we find our people injust you.
Maybe you were just drawing apicture, because one day you
just felt like it was heavy onyou, like if I could put it into
an image, this is what I feel.
Like, if I could put it into animage, this is what I feel.
And that image told a wholestory to someone who also felt
that way and it started thecircle of acceptance in the
community that is not often seenor accepted or valued.
(22:42):
I am grateful for you and yourtalent and that you decided that
one day this was going to bethe thing that was going to help
you heal and keep you calm.
Emma (22:52):
I love that you decided to pay it forward yeah, I don't
think I realized it was ajourney of acceptance, because
the reason I started drawingabout having epilepsy in my
experience is because when I wasin hospital I had surgery.
It wasn't to my brain, I'mgoing to say this quickly.
Hopefully my brain wouldsometimes stop my heart from
beating because of the seizures.
(23:12):
So I had to have a pacemakerput in um which was to basically
just as a just in case, whichI'm very privileged to be able
to do that, because not a lot ofpeople can get a pacemaker that
quickly.
Turnaround was very slow, very,very swift, but it was the
being in hospital alone,isolated, for seven days before
(23:36):
was only, and because it wasduring a COVID period, no one
could come and visit and nothingwas broken up for the day.
I could call people, I tried toread, tried to distract myself,
but the thing that actuallymade me feel most calm was
weirdly drawing about what I wasgoing through, because it felt
like, even if I didn't share it,it felt like it was how do I
(24:00):
put it?
It felt like it was helping me,even if it didn't help anyone
else.
It was helping me cope and ittook up time because I would
always get really, really intowhat I was doing and really like
hyper focus on it, so it wouldtake out a lot of hours of the
day.
So I didn't feel reliant onsomeone calling me or trying to
keep myself distracted and keepmyself positive, because it
(24:20):
wasn't not being funny.
A hospital isn't really a niceplace to be in and even if
you're in a recovery ward, youbecome very aware that you're
you're sick or you're not unwellor you're not right.
And having that with me made mekind of cope better, and it
wasn't just the drawing.
I would then write about myexperience within like the
(24:43):
captions and say what happened,to kind of get my own head
around what happened.
Because I felt like I'm having apacemaker fitted I'm so young
and there was a debate betweenif I should have one, if I
shouldn't, because it has to bedone, redone every 10 years for
the rest of your life.
I was like that's a bigcommitment and that's why I'm so
reluctant to have it.
I feel like that was when I wasokay.
(25:04):
Well, if this is how this isgonna go, let's turn negative
into a positive and try to sharethe story.
If anyone else has to have apacemaker and they're younger
than me or they're in the sameposition.
It's like.
It's kind of like your feelingsare valid.
So I'm validating otherpeople's feelings of accepting
other people, even if I don'tknow that they're there, because
that's what I'd have wanted.
I've also always thought thepeople that have met me when
(25:27):
I've always had epilepsy havetreated me very differently to
people that knew me before andafter, because the people that
have known me as just havingepilepsy it's just kind of like,
oh okay, like it's just it'snot even looked upon when the
people that you've known forages, they kind of have this
pre-conceived idea of what youwere like.
(25:47):
If you were then suddenlyoverly emotional or you can't do
things that you used to do withthem, it can be overwhelming
having to continually explainyour condition.
Sometimes I just want to belike here's the picture.
There you go, look at it, and Idon't want to have to keep
telling you over and over again.
And that's not because I don'tappreciate them.
(26:10):
Sometimes it's just because I'mso exhausted from having to
explain my existence and whyit's different and why it's
changed and why I am the way Iam.
As I've been through enoughcrap, I really don't need this
one.
It's another thing.
I think sometimes, drawing itand being able to be like, yeah,
this is how I feel or this isthis is what I've been going
(26:30):
through in my head with apicture and a couple of words
that I've written, or theeducational images of this, is
what an aura looks like for aseizure.
This is how a phone procedureworks that you have like the
words to explain what it is andhow I feel.
I don't have to constantly sayit.
I think it's a big weight offmy shoulders.
The constant explaining is istiring.
It's very draining.
(26:51):
I think anyone that's had asituation like that will
understand.
When you're like, yes, I havethis, yes, this happens, I'm
going for this over again.
It's like every time you go toa doctor's appointment and they
go the intellectual history,you're like, oh really, yeah, do
you know?
But it's like, it's like youshouldn't you know this.
I want to turn it with a bookand be like read that then.
Then we'll have a chat.
I mean, I understand thatexactly.
Jen (27:14):
It's almost like did you even look what other doctors
have said about me?
Maybe they are really that busy.
I don't know what it's like tobe in their shoes, but
everything that you're sayingright now actually has me
thinking of a recording that Idid with andy and a few others
last week.
Andy, I don't know if this ispopping in your head, but we
were talking about theimportance of having an elevator
pitch.
(27:34):
One thing that I brought up tothem is having a business card.
I'm picturing a beautifullydesigned, because I'm looking at
your website, which is gorgeous, by the way.
You need a beautiful businesscard with a QR code to your
website and an about you thingso you can hand that over and be
like website, and an about youthing, too, so you can hand that
(27:55):
over and be like this is what'sgoing on, and that way, if you
are exhausted or you're justtired of talking about it, you
can say here you go.
Now they have this beautifulpiece of art, but they also have
all the information about youas well.
Emma (28:03):
That's a really good idea actually the whole elevator
pitch thing and doing that.
But I think in my head I'm alsoa very emotional person, but
the idea of going hi, nice tomeet you there you go feels very
like, not clinical, but a bitlike, as I, they have stuff too
it's not just all about me andlike they also have.
(28:26):
They might have stuff that theyhaven't shared and I'm a very
open but say I think I'm I wouldovershare, let's be honest.
Uh, I think sometimes thatmakes people feel comfortable
and sometimes it makes them feeluncomfortable.
If it's a person that feelsaren't they don't feel
comfortable sharing, I'll givethem a card.
But if it's someone that doesfeel comfortable sharing, maybe
(28:46):
you can sometimes have aconnection and learn something
about something you didn't evenknow existed.
When I think about it, uh, goingback to when I thought I might
have adhd and one of my friendsI'd met via my boyfriend, she
had adhd and we were talkingabout things.
I was like, oh my god, youunderstand, it's like you get it
(29:07):
, you actually as I, but I just,you know, I wouldn't have
thought anyone and I justthought it was me being weird.
And then, as soon as she kindof accepted the fact that she's
like no, I do that, oh my god,no, that's not weird.
So, yeah, but I do have adhd,though, and I was like, oh right
, and then I was like it thengot me looking into it, which
made me more curious as to whynot, why I acted it and I don't
(29:31):
want to be like, oh, Iself-diagnosed myself as adhd
because that's really irritating.
But I am also one of thosepeople, only because, when I
then, when I spoke to myneurologist about it, I said to
him is there a chance I couldhave adhd?
As, like I've been seeing himfor like quite a few years,
three years or something and hewas like, yeah, probably like 90
of people that have epilepsyend up up having ADHD.
(29:52):
And I was like you would havenever told me that if I'd have
never spoken to her and neverhad that connection with her.
So, as much as that's abrilliant idea, especially like
at events, to give an elevatorpitch and like hand the card
over I also think that it'simportant to communicate that,
because then you can have someexchanges that are like
absolutely brilliant.
They've like formed amazingfriendships.
(30:15):
So then, be like, so like weget each other on a different
level, because you understand mein a way that no one else could
, because they haven'texperienced it, and people don't
understand really unless theyhaven't experienced the
situation, which I think isbrilliant, lovely, but also
quite sad at the same time, Iabsolutely agree with you.
Jen (30:32):
I think there's a time and a place to have an elevator
pitch or have a business card togive to someone.
But then there's those timeswhere, hey, let's sit down and
have coffee and let's chat aboutthis, because number one life
is about connection.
Right, we are not meant to liveon an island by ourselves.
Life is meant to be surroundedby other people and
communicating and getting toknow each other.
(30:53):
And so there's some beauty insharing our experiences and
finding out how manysimilarities we have and how
much we can support each other.
And it's almost like meetsomeone that's like you and it's
like, oh, can we be friends?
We need to sit down, and andyou can easily sit down and talk
to someone for hours.
But then there's times wherepeople really do just want to
get to know you and to learnmore about what's going on with
(31:16):
you.
They want to better understandit so they can better support
you.
Andi (31:19):
Well, I have a question.
So you're a personal trainerand as a personal trainer that's
also chronically ill I want toask you what was the hardest
thing for you as a trainer beingon the other side of it now,
but chronically ill so goingfrom the gym goer I refer to
myself as a gym rat because Iwas in there, I was picking up
the heavy shit, I was putting itdown, right, I was that's it
(31:42):
gains, let's get them.
And then life changed.
And then I was like, oh my, Ican't do that.
I struggled a lot my first Iwant to say six or so months,
because I was so used to beingable to do it my old way.
What is like one of the thingsthat you learned how to do
differently that you would sayI'm so glad I learned how to do
(32:02):
it differently because this isway better now.
Emma (32:04):
Really interesting question.
Actually, I used to go to thegym four or five times a week as
a normal.
Then, obviously, when I wasdiagnosed, I still tried to do
that.
But four or five times a weekas a as a normal, then obviously
, when I was diagnosed, I stilltried to do that, but then I'd
be a lot more tired, quicker.
I really wanted to become apersonal trainer so I could be
self-employed and I could pickas and when I worked.
So that was so be flexiblearound me.
(32:25):
Um but two.
I loved it and it made me feelpositive about myself.
I was genuinely in my happyplace, was going to the gym
because I felt every time Ileave, I'd never left feeling
like I had a bad day or I had abad workout, because at least
I've done something active today.
I also felt like all thepersonal trainers were all the
same and they're all like either.
(32:45):
There was no like personaltrainer for someone like me, so
that would understand if youcancelled last minute or if you
couldn't do x, y and z, itwasn't because you were being
flake and you didn't want toturn up.
You couldn't be asked.
It'd be like no, I'm genuinelynot okay.
I think the main reason I didit's because I wanted to
understand myself better,because what you learn in, say
(33:06):
what you learn in school, isreally vague.
When it comes to fitness, it'lljust be like this is how you
play football or whatever, andit's like, yeah, cool, great.
That doesn't really help meunderstand it, unless you like
some nutrition or anything likethat.
For me.
I wasn't interested in it.
Then as I got older I was, and Iwas like I really don't know
anything about my body.
I don't understand why thingswork, do a certain way, why
(33:29):
things work a certain way.
So I did work a certain way.
So I did it purely for aselfish reason, because I wanted
to understand why does thishappen when this happens?
Why does this happen when thishappens?
I found a lot of the trainingand the course to be very
tailored to a certain person.
I was like, well, that wouldn'twork and that doesn't work and
that's not quite true.
I was like you have to do it topass the training and whatever.
(33:51):
It was insightful.
I'm not saying it wascompletely useless, but I'm
saying it was for someone thathas a chronic illness and also
someone who's a woman.
You'd be like, okay, some of itwas just a bit.
The reason why I wanted tolearn was because I thought I
knew my body well.
Then, as soon as I got diagnosedwith epilepsy, I was like the
whole, like you said, datingyourself again.
(34:12):
I felt like, okay, I need someinformation here, I need someone
to show me why these thingshappen and why they don't happen
.
I've actually found sincetaking medication it can
fluctuate my weight reallyreally drastically at points.
So I used to be informed on howto help myself in any way that
is possible and in an educatedway.
(34:33):
And just some random person oninstagram or tiktok saying you
should eat like 600 carrots orsomething stupid, like you need
to know exactly what's right andwhat's wrong.
But then education from thattaught me okay, that's what is
for the general statistic, as itwere.
And then thinking about tellingit to myself.
(34:53):
But then, ironically, um, Iwent to go apply for a job at
the gym and they did the classicthing of you don't fit in what
we need from you, which is, evenif you're working freelance,
it's the only to work x amountof hours and I was like I can't
do that even as someone who'sself-employed, they're like,
yeah, we can't do that alsotaught me the whole.
(35:15):
People are still quite brutal.
Even if you're there doing ajob, trying to help people, they
it's.
It's very selfish businessthing.
I'll say, okay, I guess I'llhave to work on my own.
Even since that point, I haveavoided going to the gym and
it's actually called me moreproblems, which is ironic
because you think a place that'ssupposed to make people feel
good wouldn't reject someonebecause of a health and fitness
(35:38):
thing, and a place that used tobe my massive happy place wasn't
anymore.
I don't like going thereanymore, but I'm literally
building up to go back just togo to the gym, not not even as a
personal trainer, but it'sstill.
It's a very like a journey thatyou have.
You wouldn't expect it to belike that.
I think that's a lot of thethings I've learned with doing
anything since being diagnosed,all just because I'm getting
(36:00):
older.
It's the.
What you expect to happen isn'talways what's going to happen,
and you can have this foolproofplan of I'm going to be
self-employed, I can look aftermy body and I can help other
people in my condition.
It's going to be great.
You have this full idea life'slike.
No, that's not.
That's not for you, you can dowhatever else.
I still like train and stuff.
I mean not as much as I used to, even with I don't do it as
(36:22):
much.
I focus a lot more on theillustration, especially because
it's the mental side of thingshas changed me because of that
experience, kind of one, kind offilters into the other and
helping that one grow and thenhopefully, eventually it's going
to be a, an even scale.
Andi (36:39):
I can't even remember what the question was now I don't
know that the scale will ever beeven, but there'll be more
balance.
I think we always, we gothrough life and every season of
life we just exchange you know,the different voluntary or
involuntary stressors, and thatwe tilt the scale all day long.
The balance changes.
(37:00):
But I think as we go throughthe journey, especially of the
dating ourselves and getting tounderstand us more and what is
the trigger and why does my bodyfeel this way only around you
that we learn to exit stage leftand we learn to go.
It's okay to say no and it'shey, I'm gonna love you from a
distance because I have to loveme a little bit more right now.
(37:22):
I struggled with understandingwhat my identity was as a coach
post heart attack, when I couldno longer do the thing that gave
me my identity right.
So people would see me and belike, hey, coach, and I'm like,
oh, blind, deaf, had a wholeheart attack.
I can't show you how to do thatright now.
I can't lift that.
I can't lift anything over 10pounds.
I can talk you through it.
(37:42):
But people started to look atme as if I couldn't do things
and every diagnosis it it waslike but I'm like however in the
layers of days where they werebad, and I've had several of
those days where they were bad,even as an entrepreneur.
I look back at it now and I cansee there were bad chunks, but
so much good was happening whileI was focusing on the man.
(38:07):
Why isn't my life just?
And then, seven years later,you have someone go.
I don't think that you knowthis, but your life changed mine
and just the little things thatyou choose to share.
And so, yeah, we don't alwayssee it when we're going through
it, you don't always see it.
The strength that comes fromsaying you don't always see it,
(38:30):
the strength that comes fromsaying, hey, this is, this is me
now, and it doesn't look likeit always did, but I'm OK with
me now, that acceptance portionis huge because the minute you
go, I'm not who I once was, butI'm not who I'm going to be yet
and I'm OK with where I am rightnow and I need you to be OK
with it too.
People look at you differently.
You command a room differently.
They accept you in a wholedifferent way because it's no
(38:53):
longer.
Can I convince you to acceptyourself?
Can I convince you to acceptthat your normal may look a
little bit different, but saythat's lathered in so much pity
and you're like you don't haveto tell me that, because I
already know that my normal isdifferent.
Emma (39:07):
Yeah, stop waiting why did all of that as in the whole,
you, the whole, sitting back andlike you know when to leave and
you know when to stay, you knowwhen you need to love people at
distance, and all that.
It's very, yeah, very relevantfor anyone that's been through
like a major traumatic situation.
And also, yeah, I understandwhat you mean when you feel like
(39:28):
when I used to be going to thegym, I used to just I lift so
much more but then it was likehappy place and comfort place.
I feel like that deterioratedslightly because of x, y and z.
I mean like I didn't move, getout of bed for like three weeks
or four weeks at all since I,when I had pacemaker fitted.
And when then I went back and Iwas like I'm so weak, I can't
do it, I was like how can I callmyself a personal trainer if I
(39:51):
can't even do it?
And there's so much of thatdoubt within yourself.
And when you said you need tohave that confidence within
yourself to then share it or youknow, tell people or be
confident that you know thatyou're in the place that you
need to be and you're learningfrom I don't know you and
current you, that is a reallypowerful thing to do because,
(40:14):
like you said, once you haveconfidence and you know yourself
and you can command a room,it's like yeah and I'm.
I feel like this is it soundshorrible, but it's like it's
happened for a reason, becausethis is all kind of come
together and some things are badand they happen and then just
there's can't really put a nicespin on it.
But sometimes I think the onlywhat, the one of the ways I cope
(40:36):
with it, is thinking what haveI learned from this and what can
I learn from this?
And try to put that positivespin and try to be positive
within myself and this is comingfrom a person that is
ridiculously negative and havenever been able to take a
compliment ever.
I find it difficult if anyonesays like you look nice, I'm
like.
No, I don't like I'm, I'm likereally awkward.
But I feel like weirdly, havingthe epilepsy and having to
(41:01):
redate myself as an adult whichI think I was gonna say most
people do, but I don't know thatbecause I kind of put it down
to the epilepsy that's when thatpivotal moment happened.
I feel like it's just all kindof weirdly come together at the
right time.
I'm not saying, you know, it'sfucking great right now, because
(41:21):
it's not, and let's be honest,there's always going to be a bit
shitty bits and good bits.
But I think I put so muchpressure on myself for
everything to be perfect all atonce and for me to be okay
straight away and for everythingto go back to how it was
straight away.
And as the realization of noscrap that plan, let's make a
new plan, which is to see howthings go and accept you for you
(41:45):
, instead of the trying to walkyou back into the old version
which, to be honest, was younger, more naive and had less
empathy of understanding of thiswhole thing that you've been
through.
And it's amazing to kind of seethat kind of transformation,
especially like I worked in acare home for like six years as
a receptionist and people like,oh gosh, I used to think people
(42:05):
would judge me for that job alot because I was like it was
only supposed to be anintermittent job between
university and then starting mycareer.
But then my career neverhappened because I got epilepsy.
Then I changed what the versionof career meant because I then
decided what I wanted to do,which is to start my own
business, but equally, from thatjob I learned so much because
(42:27):
the people that you meet, thestories that you hear and the
understanding of what peoplehave been through in life and
they're, let's just say, theaverage person is 80 years old
and I could relate to them interms of a doctor's appointment
or what medication they were on,things like that, and I'm like
that's weird.
But then also the reason I'm sogood at this job is because I
have that understanding and thatwouldn't have happened if I
(42:49):
didn't have epilepsy.
Andi (42:50):
I wouldn't have been in the hospital and seen one of the
residents walking through beinglike, well, yeah, so he
pacemaker, just yeah, me tooweird, like that wouldn't have
been so true, I have so manyconversations like once, these
scars, but I think that I am abetter trainer and a better
coach, because now I'm likeyou're not functionally moving
your body and how do I knowyou're not functioning in your
(43:12):
body.
I live in chronic pain.
I don't want you to live thereand I think that we make literal
.
We make better.
I'm going to say it.
We make better trainers becauseour bodies attack itself all
day, and so we're like theremight be a more efficient way to
do that where you can work thesame muscle group without the
injury that may come from youdoing it incorrectly because you
(43:34):
want to pick up heavy shit andput it down right.
So I learned so much, and sonow the young athletes that I
work with, I see you, I know youwant to go hard, you want to do
all of this, you want to getall these gains.
I get it.
What I need you to do is paceyou so that you can actually
reap all the benefits of doingthis Right.
It forced me to slow downenough for me to understand and
(43:58):
enjoy my process, but also beable to relate that to the
generation that is watching meLike I can't rush the journey if
I'm telling you not to rush thejourney and while you're going
to be frustrated, I got to sitwith them and explain to them.
I understand your frustrationbecause I live your frustration
and while you were trying to getstronger, coach is trying to
(44:18):
get stronger with you.
So I understand yourfrustration because I live it,
but I live it for a differentreason and here's why.
So it got to open up all ofthese conversations.
I live it for a differentreason.
Here is why.
Now you may know that I havethese health things.
This is what it did to my body.
This is what it did to mymuscles.
But before these diagnosis, Iwas an athlete that was going
(44:39):
hard in the paint that wouldn'tsit down.
Then my body sat me down andnow I'm recovering from being
the athlete in my youth andtrying to re-actually learn how
to live in my body now and I'mtrying to prevent you from
having the things that you don'tneed to have because you won't
sit down and pace.
Now I did it.
I was so angry at all of thediagnosis and now I look at it
(45:02):
and go wait a minute, I neededto sit down.
I needed to sit down so that Icould teach our TikTok
generation.
There are people around you thatdon't look like you, that are
carrying stuff that you maynever know, and while we are
bullying each other, we arebeing keyboard warriors and
we're doing all of these things.
I don't look sick.
(45:23):
I'm your coach.
I don't look sick.
Here's what I got going on guysthat it's like whoa, but you
would have never seen thatcoming.
So be kind, because you don't.
It's free.
It's free and you don't knowwhat the person next to you is
carrying.
We all carry something heavy atany given day, but it wasn't
until recently where my body andmy mind accepted you are this
(45:45):
part of your journey becausethis was meant for you.
This was for you to change thenarrative of what sick looks
like, and continue to change thenarrative, because I don't look
sick and Emma, you don't looksick and Jen doesn't look sick
and we're out here.
So maybe maybe we're the normal.
You see what I'm saying.
Why do we go?
But I'm sick, maybe we're thenormal and everyone else is the
(46:08):
weirdos, but we assume thatwe're the weirdos.
What if everyone else was theweirdos?
What if the Spoonies were thenormal ones and everyone else is
the weirdos?
Jen (46:17):
That is a really good way of putting it because, honestly,
we are all carrying something,we are all carrying a load, but
not everyone is brave enough toshare it.
I'm looking at the time, guys.
We could go for hours.
Emma, I think we're going tohave to schedule a part two.
If you're up for it, we'regoing to do it Before we close
out.
Congratulations on co-authoringBeyond the Ordinary.
(46:40):
Can you tell us a little bitabout it before we close?
Emma (46:43):
Yes, I can.
Yeah, beyond the Ordinary is 30different women.
They've all written a chapterwithin the book and each one is
talking about their experienceof neurodiversity and how they
even got there if they'd alwayshad it, but it could be from
their journey from abuseaddiction.
In my case, it was beingdiagnosed with epilepsy.
There's a whole range of peoplefrom different ages.
(47:04):
It's all talking about theirunique experience as to how
creativity helped them cope withsomething that was traumatic or
life-changing.
And a lot of the people in thebook actually sell at the shop
that I sell my stuff in inengland.
I mean, and they they've allhad completely different life
experiences, but they all makesomething because it brings them
(47:27):
joy and helps them deal withsomething like adhd, which
should be the normal, to behonest.
Um, it helps them cope.
So it's everyone's littlesnippet of like you said andy
about.
You wouldn't expect that personwould have gone through that.
There's a person I worked withfor like I don't know two years
and she was one that said Idon't know part of the book.
I was like, yeah, sure, I'dlove to do that.
(47:48):
Like she read my chapter andshe was like I had no idea you
had been through all of that.
I was like, yeah, no you, whywould you?
I read her chapter and I waslike bloody hell, like there's
just so much that people don'tknow because they don't.
It's not really always a placeto share it, but the book is a
lovely place to start to helpunderstand people's stories, to
(48:10):
learn how to empathize withother people and to show that
creativity is a brilliant way toalso bring people together, but
also show that it's a brilliantway to cope with things that
can be difficult.
That's what I love about it asbeing part of it.
Also, it was a joy to write forme because it was therapeutic
in itself to write it, so yourealize how much you've been
(48:32):
through and how resilient I'vebeen, because as soon as you
write it all down, you're likeI've been through all that.
Yeah, I actually am.
What these, all these myfriends say I am.
Oh, you're doing well, you areresilient, you are, you've like,
dealt with a lot, but until youwrite it all down, you're there
going.
No, no, it's just another day.
It's just another day, but itis.
It's a lot to deal with andthere's people that haven't been
(48:54):
through things like a lot ofpeople in the book have been
through.
It's the fact that those peoplestill get up every day and do
something and you're there likeyeah, I'm actually pretty good,
I'm pretty proud of myselfbecause not everyone can do that
.
You know, it's a kind of acelebration and of the fact that
people have been through a lotof stuff and are still managing
to move forward in a way thatmakes them happy.
(49:16):
Really, that's a really way toput it, but that's how I, that's
how I feel about it.
I can show you enough.
Jen (49:24):
This is what it looks like beautiful, you are not cringy
whatsoever, sorry, I love thecolors.
Andi (49:30):
I love everything about that.
Jen (49:31):
I love everything about that.
It's gorgeous.
We are going to share in theshow notes how people can get a
copy.
Get in touch with you, see allthe things, do all the things.
But I'm telling you right nowbook it.
We're going to do a secondepisode because we need it.
Thank you for your time andAndy for joining.
I cannot wait to chat with youboth again and everyone out
(49:54):
there.
Until next time, don't forgetyour spoon.
Welcome back to my Spoonie Sisters, and today we are
thrilled to welcome Emma to mySpoonie Sisters.
Emma is an incredibleillustrator and advocate who
uses her creativity as apowerful tool for healing.
Diagnosed with epilepsy at 23,she has channeled her journey
into art, therapy andself-discovery.
(00:21):
Emma is also a personal trainerand co-author of the number one
bestseller Beyond the OrdinaryDiscover the Power of Creative
and Neurodiverse Women.
She's here to share her story,talk about raising awareness for
epilepsy and explore thediverse coping mechanisms that
she has embraced.
So let's dive in and learn moreabout her inspiring journey.
(00:44):
Hi, emma, and welcome.
How are you today?
Emma (00:47):
Good, thank you.
I think to go off on tangentsand forget the question, so this
could be interesting it can beinteresting, but you know what?
Jen (00:56):
I'm here for it, and I think Andy is too.
We're excited to chat with youand hear all about you.
Do you mind telling us yourdiagnosis story?
Emma (01:04):
I actually got diagnosed at 23.
I think I actually had epilepsymaybe a year or so before that,
but wasn't aware of what it wasbecause I've only ever thought
of epilepsy as one kind of thingin a very ignorant sense.
I was very ignorant of my owncondition because I didn't know
that there were so manydifferent types of seizures.
So when I was diagnosed I hadlike a buildup were so many
(01:25):
different types of seizures?
So when I was diagnosed I hadlike a build-up over quite a few
years of having these littleweird moments, I would say,
where I would be at work orsomewhere familiar, and I feel
like I'm having deja vu whichsounds like a really like oh,
everyone has that, but it's thedifferent level of deja vu.
And I thought, oh, it'sprobably because I've been here
before.
It's a different level of dejavu.
And I thought that's probablybecause I've been here before.
(01:45):
It's a bit strange.
And then I kept having someweird things going on in my eyes
and I was like it feels a bitodd.
So I went to the dieticians andthen they did a check on my
eyes but your eyes got something.
Something's a bit wrong.
So we're going to send you toback to the doctors, and the
doctors are going to refer youto the hospital, and this goes
back and forth.
Long story short, that wasn'tanything.
I was still like, well, what'sthe problem?
(02:06):
Then I was like these thingsare still happening and it's
still really bothering me, likecan I have another opinion?
So I went back to the gp and hesent me to a neuro neurologist
oh, my god, I can't evenremember his name, um and he.
He didn't get back to me untillike nine months later, because
the waiting list is so long,obviously because of the nhs.
(02:30):
It's um, well, you get seenwhen you get seen, and if it's
not that important, as in, I'mnot like a kind of person that
would drop to the floor, havefits and hit myself or anything
so I was low risk at that stage,went into that appointment with
my mum first five minutes I wasin there he diagnosed me like
(02:51):
likethat and all I remember him
doing is looking into my eyeswith a telescope, one of those
weird I don't even know whatthey're called things.
He took my knees and he wasseeing my reflexes and then he
goes yeah, you've got epilepsy.
This is after me saying thesymptoms and I thought what do
you mean?
I was like I don't haveepilepsy, I definitely don't.
(03:11):
I don't drop to the floor oranything, I just feel a bit
funny.
I thought I was just gonna thengo home and tell me you need to
do some like meditation orsomething, as in.
I wasn't expecting you've gotepilepsy.
It was like what the leading upto that is, in the nine months
that I was waiting, when I wentto Sri Lanka after I'd graduated
from university, I did thetypical oh my god, I'm gonna go
(03:34):
like help and be a volunteer inanother country, because
apparently that's what allBritish people will have to do.
So went, I went to Sri Lankavolunteered with a friend.
It was there that I was moreworried than I'd ever been,
because every other time I'd hadan episode of deja vu.
I was in a place that I'd beenwith before, around people that
I'd known, so I thought it'sjust deja vu.
(03:56):
That was the time that I was ina country I've never been to,
surrounded by a group of peoplethat I've never met, and I
thoroughly had a meltdown andpanicked.
I was like, oh my God, thisisn't right, something's not
right, really not right.
I went full panic mode,sweating, freaking out, had to
be taken away from everyone, satdown like are you okay?
(04:18):
I was like I don't know.
It lasted for a good five to 10minutes and then I was fine,
wait for a good five to tenminutes.
And then I was fine, wait forhospitals out there.
They said, wait till you gethome.
You've got, like, anappointment, it'll be okay.
Then, obviously, nine monthslater, they're like yeah, that
was, that was a seizure, youwere having a seizure.
I was like, oh, I didn't knowthat was a seizure.
They're like yeah, there's 40plus different types of epilepsy
(04:41):
and they do not look the same.
Everyone thinks of just the one, because that's the one where
you mostly get hurt.
Obviously you have to thinkabout how to make sure you're
safe.
The deja vu one didn't add upto me because I'd never heard of
it.
And why would?
I was completely oblivious tothat, even being a thing with
any condition.
If you'd never heard of it, whywould you know?
(05:01):
I found out when I was 23 andeverything kind of went a bit
downhill from there.
Not gonna lie, I was veryoverwhelmed with the diagnosis
because I'd been driving since Iwas 17.
And that day they had to takeaway my license.
So the independence of myselfwas kind of lost.
I was like how am I going toget to work?
(05:23):
How am I going to do this?
How am I going to do that?
I was very much like, but I'vealways been very independent as
a person.
I drove to and from uni all thetime, even though it was an
hour and a half drive forEngland.
That's really far, by the way.
I feel like it's not the samein Morocco.
Um, it was, and I always drovemyself to work.
I did my own shopping, I livedwith my parents, but I still did
everything for myself and Ifelt like I was back at school,
(05:45):
being like mum, can you take meto work?
I was like I feel like a child.
I hated it.
That was a bit of aspiring intolike depression, anxiety,
things.
So then started with medication.
Ironically, since I wasdiagnosed, the epilepsy got
worse.
Then I did start to haveseizures where I collapsed.
One of the most memorable oneswas my boyfriend and I had just
(06:05):
been to the gym.
We left and he was about todrive me home to be at home by
myself, which is why I was it'sa bit scary and went to get in
the car and he was like are youokay?
I was like no.
He said that's the first timeI'd ever said no, because I
normally go no, no, I'm good.
I'm good like because I'll justtry to brush off and it's fine.
You know, whatever, there Iwent, no, it's like he went like
white as a sheet and he wentaround the car to catch me or
(06:29):
ask us okay.
I completely dropped to thefloor, said that my legs went
like stiff.
Sounds horrible.
Impression is not a nice oneall I remember was saying no.
I remember having a dream aboutunicorns, which is hilarious, I
think, because I was there likemy own little bubble, completely
unfulfilled, having a greattime.
Unicorns which is hilarious, Ithink, because I was there like
in my own little bubble,completely unfocused, we're
(06:49):
having a great time.
And suddenly I hear Emma, we'rehere, emma, okay, can you hear
us?
And they go sir, am I having anap?
Completely disassociated thesituations with each other.
I woke up to the ambulance teampar tea, paramedics around me,
my boyfriend there.
They're going hold up, what areyou doing?
I said, oh no, you don't.
You didn't need to call them,I'm fine.
(07:09):
He's like no, you're not, youjust dropped to the floor.
I was like, yeah, but thatsometimes happens, it's fine,
like it's not over five minutes,you don't need to call anyone.
He was terrified because he'dnever seen me actually have a
seizure in person.
I think for him it's more likethe panic of that and he had the
first thing he thought to do,which is perhaps a thought
straight away.
Luckily they were about fiveminutes down the road.
(07:30):
It's just lucky they were there, because otherwise that would
have been like a couple of hoursand I would have recovered, as
it were.
They checked my bloods and dideverything and I said I'll speak
to the.
They're more worried about himthan they were about me because
he looks so shocked at seeing meso vulnerable and completely
unresponsive that he wasterrified.
(07:51):
He was like I've actuallythought you might have died.
And then he was like, but thenyou were moving.
So I was like it's fine.
So I ran inside and so hetripped over the step gate into
the house because he waspanicking.
I mean, bless him, he wasabsolutely brilliant.
But I was like, do you want totake him into the hospital or
not?
Me like, it's fine, I was just.
It was just very awkward.
The reason.
I remember that.
So that's the time I realizedbecause you physically see it,
(08:13):
how much my diagnosis affectedother people.
Because I don't see it, Ididn't really think anything of
it.
I sound, not anything of it.
There were a lot of emotionalattachments and things like that
.
Physically, seeing him likethat freaked me out because I
was like, can I actually lookthat bad?
Like does is it really that bad?
Because I don't.
I'm there going, I'm asleep.
Basically it feels like, andthen I wake up.
(08:33):
That's just that hole inbetween the stuff.
Yeah, so that's happened forlike a number of years or
whatever, but that was obviouslyquite two years in um question
was that?
How do I get into illustrationfrom that, wasn't it?
Jen (08:48):
yeah, but I want to interject for just a second.
I think in andy I don't know ifyou have any experience with
this as well, but I think if, ifyou're experiencing it yourself
and of course this depends onthe kind of seizure right, you
don't see what you look like,you don't see what's going on,
and so for those around you likelike he was absolutely
(09:10):
terrifying, absolutelyterrifying.
They're not used to seeing youin such a way.
Emma (09:14):
It just kudos to him for not falling flat on his face,
you know I felt also because, um, he I'd spoken about it and
he'd never seen it.
It was almost like just a thing.
It just didn't matter.
Not didn't matter, but ithadn't been a thing in our
(09:35):
relationship because at thatpoint I think we'd only been
together like a year or so.
I remember the first date wewent on my mum said tell him you
have epilepsy in case somethinghappens, picked me up in his
car and I said just to let youknow I have epilepsy, so if
anything happens.
It's a bit weird.
He's called my mum.
I showed him like my phonething.
I was like I know, what if thathappens?
(09:56):
it happens because I was veryopen about it.
It was only till about a year,two years in, he'd actually seen
me have a seizure where Icollapsed.
I think that's why it was sucha shock, because he's seen you
so normal, whatever that means.
It's been a very weirdexperience for him to suddenly
see me as this really vulnerableperson.
It's very difficult, um,because obviously we built a
(10:18):
relationship over that time andit wasn't just like going on a
date one time doesn't matter.
It was like fully invested inrelationship and he's like, oh
my god, now I realize howterrifying it is.
This is, whereas if I said thaton the first date and I'd had a
seizure, he'd probably been like, no, no way, because it is
terrifying and it's not reallynice.
Well, you don't really have todispose it.
(10:40):
You don't have to do anythingyou don't want to.
But I can't lie to people andit's such a massive part of my
life now that I'm like it iswhat it is.
If you like it, you like it oryou have to like it, but it is a
part of me and I've acceptedthat.
Jen (10:55):
Definitely it's a part of who you are.
If people want to be part ofyour life, they need to accept
all of who you are.
Andy, do you have anything tochime in?
I?
Andi (11:03):
do you know I like to throw the monkey wrenches in
early.
I have a question, because Iknow that our people that care
for us, they freak out whensomething happens that they
haven't normally seen orexperienced.
And we live it.
Do you think perhaps maybe theboyfriend perhaps were freaking
out because he was so used toyou, seeing you fine as a
(11:23):
description, I'm fine.
But what that fine really lookslike?
You know what I'm saying fineto us, I'm fine.
We use it all the time.
But fine to us, in the bigscheme of things, really isn't
fine to the average person.
It's just our everyday norm.
So if they don't live a lifewith chronic illness and they're
(11:44):
just the supporting cast, Ithink it freaks them out.
Because what does fine reallyactually mean for real If we're
like no, I'm fine, it's fine,it's fine.
Whatever.
The doctor's office was trash,disappointment was trash, but
it's fine.
I feel like garbage, but it'sfine.
Ouch, that hurts, but I'm fine.
Oh no, I've had a full blownseizure.
I took a nap though.
Hey guys, why is everybodystaring at me?
(12:06):
It's really fine.
And he's like well, wait aminute.
You've been fine all theseother times and it did not end
up with you on the floor.
This time, fine, lookeddifferent For me.
It was my heart attack.
Mine was hey, I'm fine, I'mfine, I'm fine.
And then bam, whole cardiacarrest.
That's it, dead, dead, dead 38minutes.
I told people that day I wasfine.
(12:27):
I had literally just toldsomebody I was fine, I wasn't.
I was overwhelmed, my chesthurt, I hadn't slept, I was in
the middle of a flare and then Iwas dead, dead, craziness.
Emma (12:45):
That's quite massive.
Also, I love the way you justdescribed it as, uh, like
they're the co-supporting actkind of thing to us.
I think that's a reallybrilliant way to look at it,
because you are kind of the mainperson of your life.
I think it's quite good toremember that.
You don't have to cover that.
Just make sure everyone else isfine, like they're the main
part of the show, like you arein your own life.
Ironically, when I talk aboutthat time, I genuinely was fine.
I think that's what scared metoo, because normally if I'd
(13:06):
have a flare-up of seizures, itwould be because I was really,
really stressed.
I'd be having slept or I hadn'ttaken my medication.
I'd done all those things.
I'd also eaten, drunk enoughwater and gone to the gym.
I genuinely felt fine and Ithink that was the shock.
If I'd had a focal seizure iswhere I don't know if you know
what focal seizure is, but forthe purpose of this is when you
(13:30):
are fully conscious but youstill have the feeling of deja
vu, as it were.
You kind of.
For me, I personally becomemute and it can be known as an
absence seizure, but it'sdependent on what part of the
brain.
I'm a neurologist, so don'tquote me on that.
If I'm having a focal seizure,I'll just go, and if someone
(13:53):
says anything to me I'll justsay if you know me, that means
I'm not good.
So he'd seen me with those kindof seizures and they'd never
built anything like that wherehe'd been present.
Normally for me at that timetime a focal seizure would then
turn into a seizure.
I'd collapse.
So I was.
It was more like the pre-panicbefore the actual show and I'd
(14:13):
be like really so I think that'swhy I would get so panicky now,
because it's been a few yearslater when I I don't have the.
That's a whole other story.
It's it's like so he, he'd knowif I hadn't slept and I've been
tired, I'd be like if I had afaux procedure.
I'm going to bed, I'm notrisking this, I'm having a nap.
I don't want it to get to thatpoint.
But it's interesting, like whereyou said that you can say
(14:35):
you're fine when you're reallynot fine, because it's a full-on
masking thing.
You pretend like everything'sokay.
You don't want to make eitherother people feel uncomfortable
or to get in your own head about.
Am I going to cause somethingif I think about it too much, or
am I going to get too wound upand then that in itself is going
to like cause some kind ofstress.
It's going to cause, like in mycase, have a seizure.
(14:57):
For your case, have a heartattack, which is like very
extreme.
And for people that don't havelike a chronic illness or
anything like that, they're like, how did it get to that point?
Like you should just calm downor you should just whatever.
And you're there going.
Yeah, um, I don't know how toexplain it unless you've been
through it, because it's notlike you're doing it on purpose.
(15:20):
You're not there going.
You know, I really fancy goingto hospital today.
I would really love a trip.
It'd be great.
You know what?
I really just want someone to.
Just I'll lie there and peoplebring me food while I feel
absolutely rubbish.
It's not that it's they'regoing.
Just just make sure it goesaway.
Just don't panic about it.
You're fine, you're fine,you're fine, you're fine.
And it's like the constantreminder in your head.
(15:40):
You'll see, people do say thatmind overmatch or whatever, but
in some cases it doesn't.
It only works to a certainextent.
It's, it's just, it is what itis.
You can only learn to cope withthat and the after effects and
dealing with that in that sense.
So that's very overwhelming attimes.
What I'd say I think I'vestruggled with the most is
(16:00):
learning to cope with that andto allow myself to, instead of
bullying myself for not livingup to expectations of my
previous self or of other people, which is a hard task to last.
Jen (16:14):
Really definitely, you explained it really well.
Sometimes we think we'retotally fine and we start out
the day fine, but it might notend that way.
We need to pay attention tothat and regroup ourselves
throughout the day to see wherewe're at and make sure we really
are fine.
But it might not end that way.
We need to pay attention tothat and regroup ourselves
throughout the day to see wherewe're at and make sure we really
are fine.
But then again sometimes thatthat un-fine feeling comes out
of nowhere.
What's the backup plan for whenthat happens?
We need a backup plan.
Emma (16:35):
I also think with that kind of things, I've grown to
understand my condition.
I've learned how I can copewith it, as in initially I'd be
trying to push myself in thesame sense of trying to do
everything I used to do andhaving that expectation of
myself, and now I know what Ican and can't do.
I've had the trial and errorexperience.
(16:56):
I know what works and whatdoesn't work.
I've also tried differentmedications and all that kind of
stuff, but it's more of the uh,understanding yourself better.
It's like relearning how youwork and relearning how to adapt
to what actually is good foryou, and what used to be good
for you might not be good foryou anymore.
Or you used to like do all thetime, like even working how many
(17:20):
days a week, or being awake forlike certain amount of hours
and not needing as much sleep orthings like that.
You have to learn.
Okay, is this worth having inmy head?
Is this worth having a seizurefor I'm going?
No, it's not worth it.
If I'm worried about it, it'sin my head.
I'm panicky, I won't dosomething.
However, it's also, then,learning to cope with the not
(17:42):
getting your head so much.
You're going, you're actuallyfine.
You just need to make sure thatyou feel secure or safe and not
do as much up to the buildingup to that thing.
Try not to worry about it asmuch, which is easier said than
done.
People say, no, just don'tworry about it.
But it has to be you thatgenuinely feels like you don't
worry about it, because it's notthat simple.
(18:02):
It's just really getting toknow yourself again, the whole
new version of you.
It definitely is different forpeople that have been diagnosed
since birth, because that'stheir norm.
It's not that that makes it anyeasier.
I'm not disputing that.
I'm saying that when I wasdiagnosed, when I was 23, I had
a norm and then the norm hadjust gone.
I had these expectations ofbeing back to where I was.
(18:24):
That really shook me.
Used to be able to do like.
You can't do that, but you usedto be able to do that.
And it's the, it's the missingand longing to that old,
healthier version of me whichwas um, uh, you know it's been a
tough pill to swallow.
It's um, I think I'm, I'mgetting there and I'm definitely
a lot further down the linethan I was.
It's a positive, that is apositive.
Andi (18:48):
What would you say has been the most difficult and the
most fun part of you datingyourself, to rediscover you.
We kind of sit in the hey, thisis my new, my normal has
changed.
But then it's like theexploration phase of what I can
still do these things.
What has been the most funthing that you've discovered
(19:10):
that you can still do?
You just learned how to dodifferently.
And then what has been the mostchallenging part of learning
you to date you so that you canfeel safe with you all the time?
Emma (19:21):
the way you've worded that , the whole aging yourself again
.
I've never thought of it inthat kind of way and that's a
really lovely way to kind of putit, because it is learning
about yourself and you aredating yourself.
It's a whole new feeling.
The the thing that has been themost positive is that, um, I've
(19:42):
started my own business and Iwouldn't have done that unless I
was really pushed to do it, todo it, and I was thinking that
would be me.
A lot later on in life, afterI've had kids and after I've
worked for someone else and doneall that, I was thinking, yeah,
that'll be the good time.
I'll do that then, because I'vealways wanted to work for
myself.
But because life became a lotharder and it was a lot it's not
(20:06):
very easy to find a full-timejob that allows the people that
have epilepsy no matter whatthey say, I always know the
answer is because you can't fitinto whatever they need from you
at that particular job.
I've been pushed to do the thingthat I always wanted to do a
lot sooner, and I'm quitegrateful for that, in a way,
because I've learned more aboutthat now, so I actually have a
(20:29):
lot more knowledge for thefuture in terms of that and also
found out that that's somethingI really thrive in doing and
also it's incredibly calm, soactually helps with coping.
So I think that has really kindof come together in some kind of
a fate way which I wouldn'thave expected.
Really, and if I had done itwithout having epilepsy, I don't
(20:50):
think some of the stuff Icreate well, it wouldn't have
been as informed or.
But I thought it's more of apurpose now because I have a
message to give and a story totell, whereas if it was just
like I wanted to become anillustrator, it's like here's
some nice pictures.
Let's be honest, that's still ahard job.
It's quite hard to keep up with, you know, the market or
whatever, and that stuff I dostill enjoy, not disputing that.
(21:12):
But it's the fact that I nowfeel that when I've done
illustrations based aroundepilepsy or sharing and kind of
helping to educate through thedrawing or whatever, I get
messages saying from onInstagram saying I've I
experienced that I'm so glad youshared that so many people
share the illustrations andhelps me me feel not so alone,
(21:33):
the fact that I've had otherspeople feel not so alone.
Andi (21:36):
It's way more rewarding than just a nice picture do you
think it's because now, when youdo it and it's like awareness
driven you are creating from aspace of acceptance and it is
being received in a space ofacceptance and you feel safe.
So I can do this all day.
This does not feel like work.
I am calm, you're remindingyourself you're safe because
(21:57):
it's your journey, but it'shelping to educate other people
that may be along the way.
I think it's beautiful thatthere is acceptance of us along
the journey as we meet thepeople in our community.
When we were scared to speak upat first, to go, hey, I have
this thing or this may be goingon, we were like I'm fine, it's
(22:19):
fine, I have this thing.
It's like our dirty littlesecret, but it's not really a
secret, but don't look at medifferently.
And then we find our people injust you.
Maybe you were just drawing apicture, because one day you
just felt like it was heavy onyou, like if I could put it into
an image, this is what I feel.
Like, if I could put it into animage, this is what I feel.
And that image told a wholestory to someone who also felt
that way and it started thecircle of acceptance in the
community that is not often seenor accepted or valued.
(22:42):
I am grateful for you and yourtalent and that you decided that
one day this was going to bethe thing that was going to help
you heal and keep you calm.
Emma (22:52):
I love that you decided to pay it forward yeah, I don't
think I realized it was ajourney of acceptance, because
the reason I started drawingabout having epilepsy in my
experience is because when I wasin hospital I had surgery.
It wasn't to my brain, I'mgoing to say this quickly.
Hopefully my brain wouldsometimes stop my heart from
beating because of the seizures.
(23:12):
So I had to have a pacemakerput in um which was to basically
just as a just in case, whichI'm very privileged to be able
to do that, because not a lot ofpeople can get a pacemaker that
quickly.
Turnaround was very slow, very,very swift, but it was the
being in hospital alone,isolated, for seven days before
(23:36):
was only, and because it wasduring a COVID period, no one
could come and visit and nothingwas broken up for the day.
I could call people, I tried toread, tried to distract myself,
but the thing that actuallymade me feel most calm was
weirdly drawing about what I wasgoing through, because it felt
like, even if I didn't share it,it felt like it was how do I
(24:00):
put it?
It felt like it was helping me,even if it didn't help anyone
else.
It was helping me cope and ittook up time because I would
always get really, really intowhat I was doing and really like
hyper focus on it, so it wouldtake out a lot of hours of the
day.
So I didn't feel reliant onsomeone calling me or trying to
keep myself distracted and keepmyself positive, because it
(24:20):
wasn't not being funny.
A hospital isn't really a niceplace to be in and even if
you're in a recovery ward, youbecome very aware that you're
you're sick or you're not unwellor you're not right.
And having that with me made mekind of cope better, and it
wasn't just the drawing.
I would then write about myexperience within like the
(24:43):
captions and say what happened,to kind of get my own head
around what happened.
Because I felt like I'm having apacemaker fitted I'm so young
and there was a debate betweenif I should have one, if I
shouldn't, because it has to bedone, redone every 10 years for
the rest of your life.
I was like that's a bigcommitment and that's why I'm so
reluctant to have it.
I feel like that was when I wasokay.
(25:04):
Well, if this is how this isgonna go, let's turn negative
into a positive and try to sharethe story.
If anyone else has to have apacemaker and they're younger
than me or they're in the sameposition.
It's like.
It's kind of like your feelingsare valid.
So I'm validating otherpeople's feelings of accepting
other people, even if I don'tknow that they're there, because
that's what I'd have wanted.
I've also always thought thepeople that have met me when
(25:27):
I've always had epilepsy havetreated me very differently to
people that knew me before andafter, because the people that
have known me as just havingepilepsy it's just kind of like,
oh okay, like it's just it'snot even looked upon when the
people that you've known forages, they kind of have this
pre-conceived idea of what youwere like.
(25:47):
If you were then suddenlyoverly emotional or you can't do
things that you used to do withthem, it can be overwhelming
having to continually explainyour condition.
Sometimes I just want to belike here's the picture.
There you go, look at it, and Idon't want to have to keep
telling you over and over again.
And that's not because I don'tappreciate them.
(26:10):
Sometimes it's just because I'mso exhausted from having to
explain my existence and whyit's different and why it's
changed and why I am the way Iam.
As I've been through enoughcrap, I really don't need this
one.
It's another thing.
I think sometimes, drawing itand being able to be like, yeah,
this is how I feel or this isthis is what I've been going
(26:30):
through in my head with apicture and a couple of words
that I've written, or theeducational images of this, is
what an aura looks like for aseizure.
This is how a phone procedureworks that you have like the
words to explain what it is andhow I feel.
I don't have to constantly sayit.
I think it's a big weight offmy shoulders.
The constant explaining is istiring.
It's very draining.
(26:51):
I think anyone that's had asituation like that will
understand.
When you're like, yes, I havethis, yes, this happens, I'm
going for this over again.
It's like every time you go toa doctor's appointment and they
go the intellectual history,you're like, oh really, yeah, do
you know?
But it's like, it's like youshouldn't you know this.
I want to turn it with a bookand be like read that then.
Then we'll have a chat.
I mean, I understand thatexactly.
Jen (27:14):
It's almost like did you even look what other doctors
have said about me?
Maybe they are really that busy.
I don't know what it's like tobe in their shoes, but
everything that you're sayingright now actually has me
thinking of a recording that Idid with andy and a few others
last week.
Andy, I don't know if this ispopping in your head, but we
were talking about theimportance of having an elevator
pitch.
(27:34):
One thing that I brought up tothem is having a business card.
I'm picturing a beautifullydesigned, because I'm looking at
your website, which is gorgeous, by the way.
You need a beautiful businesscard with a QR code to your
website and an about you thingso you can hand that over and be
like website, and an about youthing, too, so you can hand that
(27:55):
over and be like this is what'sgoing on, and that way, if you
are exhausted or you're justtired of talking about it, you
can say here you go.
Now they have this beautifulpiece of art, but they also have
all the information about youas well.
Emma (28:03):
That's a really good idea actually the whole elevator
pitch thing and doing that.
But I think in my head I'm alsoa very emotional person, but
the idea of going hi, nice tomeet you there you go feels very
like, not clinical, but a bitlike, as I, they have stuff too
it's not just all about me andlike they also have.
(28:26):
They might have stuff that theyhaven't shared and I'm a very
open but say I think I'm I wouldovershare, let's be honest.
Uh, I think sometimes thatmakes people feel comfortable
and sometimes it makes them feeluncomfortable.
If it's a person that feelsaren't they don't feel
comfortable sharing, I'll givethem a card.
But if it's someone that doesfeel comfortable sharing, maybe
(28:46):
you can sometimes have aconnection and learn something
about something you didn't evenknow existed.
When I think about it, uh, goingback to when I thought I might
have adhd and one of my friendsI'd met via my boyfriend, she
had adhd and we were talkingabout things.
I was like, oh my god, youunderstand, it's like you get it
(29:07):
, you actually as I, but I just,you know, I wouldn't have
thought anyone and I justthought it was me being weird.
And then, as soon as she kindof accepted the fact that she's
like no, I do that, oh my god,no, that's not weird.
So, yeah, but I do have adhd,though, and I was like, oh right
, and then I was like it thengot me looking into it, which
made me more curious as to whynot, why I acted it and I don't
(29:31):
want to be like, oh, Iself-diagnosed myself as adhd
because that's really irritating.
But I am also one of thosepeople, only because, when I
then, when I spoke to myneurologist about it, I said to
him is there a chance I couldhave adhd?
As, like I've been seeing himfor like quite a few years,
three years or something and hewas like, yeah, probably like 90
of people that have epilepsyend up up having ADHD.
(29:52):
And I was like you would havenever told me that if I'd have
never spoken to her and neverhad that connection with her.
So, as much as that's abrilliant idea, especially like
at events, to give an elevatorpitch and like hand the card
over I also think that it'simportant to communicate that,
because then you can have someexchanges that are like
absolutely brilliant.
They've like formed amazingfriendships.
(30:15):
So then, be like, so like weget each other on a different
level, because you understand mein a way that no one else could
, because they haven'texperienced it, and people don't
understand really unless theyhaven't experienced the
situation, which I think isbrilliant, lovely, but also
quite sad at the same time, Iabsolutely agree with you.
Jen (30:32):
I think there's a time and a place to have an elevator
pitch or have a business card togive to someone.
But then there's those timeswhere, hey, let's sit down and
have coffee and let's chat aboutthis, because number one life
is about connection.
Right, we are not meant to liveon an island by ourselves.
Life is meant to be surroundedby other people and
communicating and getting toknow each other.
(30:53):
And so there's some beauty insharing our experiences and
finding out how manysimilarities we have and how
much we can support each other.
And it's almost like meetsomeone that's like you and it's
like, oh, can we be friends?
We need to sit down, and andyou can easily sit down and talk
to someone for hours.
But then there's times wherepeople really do just want to
get to know you and to learnmore about what's going on with
(31:16):
you.
They want to better understandit so they can better support
you.
Andi (31:19):
Well, I have a question.
So you're a personal trainerand as a personal trainer that's
also chronically ill I want toask you what was the hardest
thing for you as a trainer beingon the other side of it now,
but chronically ill so goingfrom the gym goer I refer to
myself as a gym rat because Iwas in there, I was picking up
the heavy shit, I was putting itdown, right, I was that's it
(31:42):
gains, let's get them.
And then life changed.
And then I was like, oh my, Ican't do that.
I struggled a lot my first Iwant to say six or so months,
because I was so used to beingable to do it my old way.
What is like one of the thingsthat you learned how to do
differently that you would sayI'm so glad I learned how to do
(32:02):
it differently because this isway better now.
Emma (32:04):
Really interesting question.
Actually, I used to go to thegym four or five times a week as
a normal.
Then, obviously, when I wasdiagnosed, I still tried to do
that.
But four or five times a weekas a as a normal, then obviously
, when I was diagnosed, I stilltried to do that, but then I'd
be a lot more tired, quicker.
I really wanted to become apersonal trainer so I could be
self-employed and I could pickas and when I worked.
So that was so be flexiblearound me.
(32:25):
Um but two.
I loved it and it made me feelpositive about myself.
I was genuinely in my happyplace, was going to the gym
because I felt every time Ileave, I'd never left feeling
like I had a bad day or I had abad workout, because at least
I've done something active today.
I also felt like all thepersonal trainers were all the
same and they're all like either.
(32:45):
There was no like personaltrainer for someone like me, so
that would understand if youcancelled last minute or if you
couldn't do x, y and z, itwasn't because you were being
flake and you didn't want toturn up.
You couldn't be asked.
It'd be like no, I'm genuinelynot okay.
I think the main reason I didit's because I wanted to
understand myself better,because what you learn in, say
(33:06):
what you learn in school, isreally vague.
When it comes to fitness, it'lljust be like this is how you
play football or whatever, andit's like, yeah, cool, great.
That doesn't really help meunderstand it, unless you like
some nutrition or anything likethat.
For me.
I wasn't interested in it.
Then as I got older I was, and Iwas like I really don't know
anything about my body.
I don't understand why thingswork, do a certain way, why
(33:29):
things work a certain way.
So I did work a certain way.
So I did it purely for aselfish reason, because I wanted
to understand why does thishappen when this happens?
Why does this happen when thishappens?
I found a lot of the trainingand the course to be very
tailored to a certain person.
I was like, well, that wouldn'twork and that doesn't work and
that's not quite true.
I was like you have to do it topass the training and whatever.
(33:51):
It was insightful.
I'm not saying it wascompletely useless, but I'm
saying it was for someone thathas a chronic illness and also
someone who's a woman.
You'd be like, okay, some of itwas just a bit.
The reason why I wanted tolearn was because I thought I
knew my body well.
Then, as soon as I got diagnosedwith epilepsy, I was like the
whole, like you said, datingyourself again.
(34:12):
I felt like, okay, I need someinformation here, I need someone
to show me why these thingshappen and why they don't happen
.
I've actually found sincetaking medication it can
fluctuate my weight reallyreally drastically at points.
So I used to be informed on howto help myself in any way that
is possible and in an educatedway.
(34:33):
And just some random person oninstagram or tiktok saying you
should eat like 600 carrots orsomething stupid, like you need
to know exactly what's right andwhat's wrong.
But then education from thattaught me okay, that's what is
for the general statistic, as itwere.
And then thinking about tellingit to myself.
(34:53):
But then, ironically, um, Iwent to go apply for a job at
the gym and they did the classicthing of you don't fit in what
we need from you, which is, evenif you're working freelance,
it's the only to work x amountof hours and I was like I can't
do that even as someone who'sself-employed, they're like,
yeah, we can't do that alsotaught me the whole.
(35:15):
People are still quite brutal.
Even if you're there doing ajob, trying to help people, they
it's.
It's very selfish businessthing.
I'll say, okay, I guess I'llhave to work on my own.
Even since that point, I haveavoided going to the gym and
it's actually called me moreproblems, which is ironic
because you think a place that'ssupposed to make people feel
good wouldn't reject someonebecause of a health and fitness
(35:38):
thing, and a place that used tobe my massive happy place wasn't
anymore.
I don't like going thereanymore, but I'm literally
building up to go back just togo to the gym, not not even as a
personal trainer, but it'sstill.
It's a very like a journey thatyou have.
You wouldn't expect it to belike that.
I think that's a lot of thethings I've learned with doing
anything since being diagnosed,all just because I'm getting
(36:00):
older.
It's the.
What you expect to happen isn'talways what's going to happen,
and you can have this foolproofplan of I'm going to be
self-employed, I can look aftermy body and I can help other
people in my condition.
It's going to be great.
You have this full idea life'slike.
No, that's not.
That's not for you, you can dowhatever else.
I still like train and stuff.
I mean not as much as I used to, even with I don't do it as
(36:22):
much.
I focus a lot more on theillustration, especially because
it's the mental side of thingshas changed me because of that
experience, kind of one, kind offilters into the other and
helping that one grow and thenhopefully, eventually it's going
to be a, an even scale.
Andi (36:39):
I can't even remember what the question was now I don't
know that the scale will ever beeven, but there'll be more
balance.
I think we always, we gothrough life and every season of
life we just exchange you know,the different voluntary or
involuntary stressors, and thatwe tilt the scale all day long.
The balance changes.
(37:00):
But I think as we go throughthe journey, especially of the
dating ourselves and getting tounderstand us more and what is
the trigger and why does my bodyfeel this way only around you
that we learn to exit stage leftand we learn to go.
It's okay to say no and it'shey, I'm gonna love you from a
distance because I have to loveme a little bit more right now.
(37:22):
I struggled with understandingwhat my identity was as a coach
post heart attack, when I couldno longer do the thing that gave
me my identity right.
So people would see me and belike, hey, coach, and I'm like,
oh, blind, deaf, had a wholeheart attack.
I can't show you how to do thatright now.
I can't lift that.
I can't lift anything over 10pounds.
I can talk you through it.
(37:42):
But people started to look atme as if I couldn't do things
and every diagnosis it it waslike but I'm like however in the
layers of days where they werebad, and I've had several of
those days where they were bad,even as an entrepreneur.
I look back at it now and I cansee there were bad chunks, but
so much good was happening whileI was focusing on the man.
(38:07):
Why isn't my life just?
And then, seven years later,you have someone go.
I don't think that you knowthis, but your life changed mine
and just the little things thatyou choose to share.
And so, yeah, we don't alwayssee it when we're going through
it, you don't always see it.
The strength that comes fromsaying you don't always see it,
(38:30):
the strength that comes fromsaying, hey, this is, this is me
now, and it doesn't look likeit always did, but I'm OK with
me now, that acceptance portionis huge because the minute you
go, I'm not who I once was, butI'm not who I'm going to be yet
and I'm OK with where I am rightnow and I need you to be OK
with it too.
People look at you differently.
You command a room differently.
They accept you in a wholedifferent way because it's no
(38:53):
longer.
Can I convince you to acceptyourself?
Can I convince you to acceptthat your normal may look a
little bit different, but saythat's lathered in so much pity
and you're like you don't haveto tell me that, because I
already know that my normal isdifferent.
Emma (39:07):
Yeah, stop waiting why did all of that as in the whole,
you, the whole, sitting back andlike you know when to leave and
you know when to stay, you knowwhen you need to love people at
distance, and all that.
It's very, yeah, very relevantfor anyone that's been through
like a major traumatic situation.
And also, yeah, I understandwhat you mean when you feel like
(39:28):
when I used to be going to thegym, I used to just I lift so
much more but then it was likehappy place and comfort place.
I feel like that deterioratedslightly because of x, y and z.
I mean like I didn't move, getout of bed for like three weeks
or four weeks at all since I,when I had pacemaker fitted.
And when then I went back and Iwas like I'm so weak, I can't
do it, I was like how can I callmyself a personal trainer if I
(39:51):
can't even do it?
And there's so much of thatdoubt within yourself.
And when you said you need tohave that confidence within
yourself to then share it or youknow, tell people or be
confident that you know thatyou're in the place that you
need to be and you're learningfrom I don't know you and
current you, that is a reallypowerful thing to do because,
(40:14):
like you said, once you haveconfidence and you know yourself
and you can command a room,it's like yeah and I'm.
I feel like this is it soundshorrible, but it's like it's
happened for a reason, becausethis is all kind of come
together and some things are badand they happen and then just
there's can't really put a nicespin on it.
But sometimes I think the onlywhat, the one of the ways I cope
(40:36):
with it, is thinking what haveI learned from this and what can
I learn from this?
And try to put that positivespin and try to be positive
within myself and this is comingfrom a person that is
ridiculously negative and havenever been able to take a
compliment ever.
I find it difficult if anyonesays like you look nice, I'm
like.
No, I don't like I'm, I'm likereally awkward.
But I feel like weirdly, havingthe epilepsy and having to
(41:01):
redate myself as an adult whichI think I was gonna say most
people do, but I don't know thatbecause I kind of put it down
to the epilepsy that's when thatpivotal moment happened.
I feel like it's just all kindof weirdly come together at the
right time.
I'm not saying, you know, it'sfucking great right now, because
(41:21):
it's not, and let's be honest,there's always going to be a bit
shitty bits and good bits.
But I think I put so muchpressure on myself for
everything to be perfect all atonce and for me to be okay
straight away and for everythingto go back to how it was
straight away.
And as the realization of noscrap that plan, let's make a
new plan, which is to see howthings go and accept you for you
(41:45):
, instead of the trying to walkyou back into the old version
which, to be honest, was younger, more naive and had less
empathy of understanding of thiswhole thing that you've been
through.
And it's amazing to kind of seethat kind of transformation,
especially like I worked in acare home for like six years as
a receptionist and people like,oh gosh, I used to think people
(42:05):
would judge me for that job alot because I was like it was
only supposed to be anintermittent job between
university and then starting mycareer.
But then my career neverhappened because I got epilepsy.
Then I changed what the versionof career meant because I then
decided what I wanted to do,which is to start my own
business, but equally, from thatjob I learned so much because
(42:27):
the people that you meet, thestories that you hear and the
understanding of what peoplehave been through in life and
they're, let's just say, theaverage person is 80 years old
and I could relate to them interms of a doctor's appointment
or what medication they were on,things like that, and I'm like
that's weird.
But then also the reason I'm sogood at this job is because I
have that understanding and thatwouldn't have happened if I
(42:49):
didn't have epilepsy.
Andi (42:50):
I wouldn't have been in the hospital and seen one of the
residents walking through beinglike, well, yeah, so he
pacemaker, just yeah, me tooweird, like that wouldn't have
been so true, I have so manyconversations like once, these
scars, but I think that I am abetter trainer and a better
coach, because now I'm likeyou're not functionally moving
your body and how do I knowyou're not functioning in your
(43:12):
body.
I live in chronic pain.
I don't want you to live thereand I think that we make literal
.
We make better.
I'm going to say it.
We make better trainers becauseour bodies attack itself all
day, and so we're like theremight be a more efficient way to
do that where you can work thesame muscle group without the
injury that may come from youdoing it incorrectly because you
(43:34):
want to pick up heavy shit andput it down right.
So I learned so much, and sonow the young athletes that I
work with, I see you, I know youwant to go hard, you want to do
all of this, you want to getall these gains.
I get it.
What I need you to do is paceyou so that you can actually
reap all the benefits of doingthis Right.
It forced me to slow downenough for me to understand and
(43:58):
enjoy my process, but also beable to relate that to the
generation that is watching meLike I can't rush the journey if
I'm telling you not to rush thejourney and while you're going
to be frustrated, I got to sitwith them and explain to them.
I understand your frustrationbecause I live your frustration
and while you were trying to getstronger, coach is trying to
(44:18):
get stronger with you.
So I understand yourfrustration because I live it,
but I live it for a differentreason and here's why.
So it got to open up all ofthese conversations.
I live it for a differentreason.
Here is why.
Now you may know that I havethese health things.
This is what it did to my body.
This is what it did to mymuscles.
But before these diagnosis, Iwas an athlete that was going
(44:39):
hard in the paint that wouldn'tsit down.
Then my body sat me down andnow I'm recovering from being
the athlete in my youth andtrying to re-actually learn how
to live in my body now and I'mtrying to prevent you from
having the things that you don'tneed to have because you won't
sit down and pace.
Now I did it.
I was so angry at all of thediagnosis and now I look at it
(45:02):
and go wait a minute, I neededto sit down.
I needed to sit down so that Icould teach our TikTok
generation.
There are people around you thatdon't look like you, that are
carrying stuff that you maynever know, and while we are
bullying each other, we arebeing keyboard warriors and
we're doing all of these things.
I don't look sick.
(45:23):
I'm your coach.
I don't look sick.
Here's what I got going on guysthat it's like whoa, but you
would have never seen thatcoming.
So be kind, because you don't.
It's free.
It's free and you don't knowwhat the person next to you is
carrying.
We all carry something heavy atany given day, but it wasn't
until recently where my body andmy mind accepted you are this
(45:45):
part of your journey becausethis was meant for you.
This was for you to change thenarrative of what sick looks
like, and continue to change thenarrative, because I don't look
sick and Emma, you don't looksick and Jen doesn't look sick
and we're out here.
So maybe maybe we're the normal.
You see what I'm saying.
Why do we go?
But I'm sick, maybe we're thenormal and everyone else is the
(46:08):
weirdos, but we assume thatwe're the weirdos.
What if everyone else was theweirdos?
What if the Spoonies were thenormal ones and everyone else is
the weirdos?
Jen (46:17):
That is a really good way of putting it because, honestly,
we are all carrying something,we are all carrying a load, but
not everyone is brave enough toshare it.
I'm looking at the time, guys.
We could go for hours.
Emma, I think we're going tohave to schedule a part two.
If you're up for it, we'regoing to do it Before we close
out.
Congratulations on co-authoringBeyond the Ordinary.
(46:40):
Can you tell us a little bitabout it before we close?
Emma (46:43):
Yes, I can.
Yeah, beyond the Ordinary is 30different women.
They've all written a chapterwithin the book and each one is
talking about their experienceof neurodiversity and how they
even got there if they'd alwayshad it, but it could be from
their journey from abuseaddiction.
In my case, it was beingdiagnosed with epilepsy.
There's a whole range of peoplefrom different ages.
(47:04):
It's all talking about theirunique experience as to how
creativity helped them cope withsomething that was traumatic or
life-changing.
And a lot of the people in thebook actually sell at the shop
that I sell my stuff in inengland.
I mean, and they they've allhad completely different life
experiences, but they all makesomething because it brings them
(47:27):
joy and helps them deal withsomething like adhd, which
should be the normal, to behonest.
Um, it helps them cope.
So it's everyone's littlesnippet of like you said andy
about.
You wouldn't expect that personwould have gone through that.
There's a person I worked withfor like I don't know two years
and she was one that said Idon't know part of the book.
I was like, yeah, sure, I'dlove to do that.
(47:48):
Like she read my chapter andshe was like I had no idea you
had been through all of that.
I was like, yeah, no you, whywould you?
I read her chapter and I waslike bloody hell, like there's
just so much that people don'tknow because they don't.
It's not really always a placeto share it, but the book is a
lovely place to start to helpunderstand people's stories, to
(48:10):
learn how to empathize withother people and to show that
creativity is a brilliant way toalso bring people together, but
also show that it's a brilliantway to cope with things that
can be difficult.
That's what I love about it asbeing part of it.
Also, it was a joy to write forme because it was therapeutic
in itself to write it, so yourealize how much you've been
(48:32):
through and how resilient I'vebeen, because as soon as you
write it all down, you're likeI've been through all that.
Yeah, I actually am.
What these, all these myfriends say I am.
Oh, you're doing well, you areresilient, you are, you've like,
dealt with a lot, but until youwrite it all down, you're there
going.
No, no, it's just another day.
It's just another day, but itis.
It's a lot to deal with andthere's people that haven't been
(48:54):
through things like a lot ofpeople in the book have been
through.
It's the fact that those peoplestill get up every day and do
something and you're there likeyeah, I'm actually pretty good,
I'm pretty proud of myselfbecause not everyone can do that
.
You know, it's a kind of acelebration and of the fact that
people have been through a lotof stuff and are still managing
to move forward in a way thatmakes them happy.
(49:16):
Really, that's a really way toput it, but that's how I, that's
how I feel about it.
I can show you enough.
Jen (49:24):
This is what it looks like beautiful, you are not cringy
whatsoever, sorry, I love thecolors.
Andi (49:30):
I love everything about that.
Jen (49:31):
I love everything about that.
It's gorgeous.
We are going to share in theshow notes how people can get a
copy.
Get in touch with you, see allthe things, do all the things.
But I'm telling you right nowbook it.
We're going to do a secondepisode because we need it.
Thank you for your time andAndy for joining.
I cannot wait to chat with youboth again and everyone out
(49:54):
there.
Until next time, don't forgetyour spoon.
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