(upbeat music)
Well welcome everyone for another episode
of "The InVisible InCourage Podcast."
And why do we call it "InCourage?"
That's "I" "N" "Courage" 'cause we believe every day
you need courage to make it through the day
when you're living with an invisible disability.
And we just wanna highlight the great things
that our people are doing out there.
And we're very excited for our episode today.
Remember, this is Invisible Disabilities Walk and Roll month
in the month of May, that's at walkandroll.org,
we're walking and rolling to support
and to remember and to honor our friends and family
living with invisible disabilities.
Well today we wanna welcome Lauren Pires today.
We're very excited to have her.
So Lauren, welcome.
Thank you so much, I'm so excited to be here.
Well, we're thrilled to have you here too.
And so we kind of wanna kick this off.
We're gonna kind of, instead of giving a bio about yourself,
we want you to give the bio.
So share with us a little bit about yourself,
where you're from, where you live,
and tell us a little bit about your day-to-day life,
'cause that's gonna be a really important part
of our conversation today.
Sure, yeah.
Well I'm Lauren, I live just outside of Toronto, Canada,
and I am a PRN media lead for a nonprofit organization
that runs the largest of Deaf Asian Festival in Canada.
So I have a lot of fun doing that.
It'll be 10 years this month
that I've been at that organization.
And I never thought I would work for a festival
with all of the energy that it takes
to run around on festival days,
but I have a lot of fun doing it.
So tell us about why your energy would be an issue.
So I was born with central core disease,
which is a rare neuromuscular disorder
where I have about 33% of the strength
of the average person, so not even 33% less strength,
just straight up 33% strength.
And I know people who work in events
who have 100% of their strength,
or what you would say average strength levels
and energy levels,
who they're exhausted at the end of festival days,
it takes them days to recover, there's a lot of body pain,
and I definitely have all that in spades.
But I feel like the joy that comes from doing the work I do
is worth it and pushing yourself is absolutely,
that's what I'm here for.
So you were born with this,
so tell us a little bit about growing up
and the impact obviously on your family, on you,
and what that looked like.
Yeah, so I actually, I was born with it,
they didn't know what it was when I was born.
I was in an intensive care unit for two months
after I was born, I had a muscle biopsy,
I went into cardiac arrest when I was a baby,
there was a lot going on,
multiple doctors didn't think I was gonna make it.
And there wasn't really, it was a mystery of what it was,
there was no diagnosis.
Actually, I didn't get the diagnosis
of central core disease until I was in my early 20s,
at some point.
I was misdiagnosed at 12 with a different kind of disorder.
And then I started seeing a specialist after I turned 18
who said, "Oh, it's definitely central core disease."
And at that point I was, it was really jarring,
I was almost kind of mad that I had spent
from 12 to my early 20s thinking,
oh okay, I have an explanation,
I can have something to tell people,
because prior to 12 I didn't have any explanation.
I didn't really know how to describe it to people
or to give any context,
I didn't know the 33% strength number, I didn't know a name,
I didn't know anyone who had it, I didn't know why,
so it was very, it was confusing I think, growing up.
And then once I got the diagnosis,
I was actually able to find a Facebook group of people
who have it across the world.
There's about 1500 people in this Facebook group,
and it was amazing to finally find people who could relate.
And central core disease affects everyone differently,
but people talking about their milestones,
people being diagnosed or yeah,
some parents with children in the group
who were diagnosed at two or at six,
it was really interesting to be like,
wow, they will grow up and know what it,
like they will have kind of a barometer for other people
and what their milestones were like.
We think about it with invisible disabilities
is that's one of the aspects of invisible disabilities
is people a lot of times can't find a diagnosis
for a long time, right.
And so sometimes even, they're treated one way
and another way.
And there's this great misunderstanding, we prejudge,
I would be interesting to hear how it impacted you in school
and with your parents and stuff,
and that whole interaction.
Because when you have an invisible disability
and you're a child,
sometimes people think differently
than what really you're going through.
Yeah, so growing up with it, with my mom,
and I asked her about like how did it affect her
and how did it kind of affect us growing up?
And one thing she said was getting the school to understand
when I was in elementary school,
was really difficult because we didn't have a diagnosis.
The only thing we could really say was her muscles are weak.
And like, I could still walk,
I could still semi-participate in gym,
I wasn't very good, and I never wanted to,
I could do a lot of things,
they were just very difficult for me.
And so it was really hard getting the school to understand
what I could or couldn't do or what I could do,
but then would tire me out or give me body pain
for a long time kind of thing.
And so she kind of struggled with the school administration
to have them make accommodations for deadlines
or for exemptions from gym or for getting in high school.
I had shortened days.
They gave me, I think the regular class load
was four courses a semester.
And then my first semester of grade nine, I had three,
partly because she, my mom, and the school administration
were worried, oh, a long regular day would tire me out.
And so I went along with that for I think the first semester
of grade nine.
And then I decided, no,
I want to do an average high school course load.
And so I pushed myself to kind of do
the rest of the semesters and the years myself.
And then I actually had spare credits left over at the end
and could take a period off on my own accord.
So that felt really good.
Yeah, well so that aspect of,
sometimes with invisible disabilities,
you can push yourself,
sometimes it's hard,
where there's times you can't push yourself
and I think about what it took,
what it takes each day for you to, you know,
planning your day, I mean, share a little bit about that,
what's it take,
I mean if you know what your energy level is going to be,
most people don't even think about it, right?
So share a little bit about that.
Well, one great example that I've heard of
is the spoon theory, which is, there was someone who,
they had a friend who asked about energy allocation
and what it's like for them.
And she picked up 30 spoons and said,
"This is the amount of energy you have for today."
And it takes one to get ready for work,
it takes one to straighten your hair,
it takes one to make breakfast.
And so you really have to think about your 30 spoons,
how are you gonna allocate them throughout the day?
Whereas people with an average amount of energy
maybe have 100 spoons.
And so that kind of difference, to put it into context,
a lot of my life is about energy consumption, I would say,
just to be able to make it through my daily tasks.
And I think actually one good example
is when I was doing the Walk and Roll, there was a day,
I think it was last Tuesday,
where I walked 6,000 steps in a day.
And that was because I just, I went to work,
I walked across to the mall for lunch, I walked back,
and then I ran some errands at another mall with a friend
after work.
And I was really proud of myself
'cause I am doing more steps per day than usual
for the Walk and Roll,
but 6,000 a day was the top that I had hit at that point.
And I was like, oh, I feel really good, I've doubled up,
I can kind of relax tomorrow.
And I definitely had to relax the next day
because I think I struggled to get 500 steps.
I stayed home, I was on the couch a lot.
I was just walking around my condo,
just to be like, okay, I should get at least 500,
get something in.
But part of the balancing act of my life
is knowing when I want to push things
and what I feel like I can accomplish
and when I need to just kind of rest and relax
and feeling okay about that.
Yeah, one of the things I'd like to say
with people with invisible disabilities,
we always think that we know better than they do, right?
And the reality is, is the person living with it,
they know what they can and can't do.
It's not for me to decide, oh, well you look like you can,
or you look like you can't, because I would have no idea,
obviously, by looking at you.
I wouldn't know you only have a third of the strength
of anybody else, you would have no idea.
I mean, also I wouldn't have any idea
how it impacts you from,
I think about one of the big things we talk about
is things like brain fog and stuff like that,
where when you consume all your energy,
what happens is your brain takes a break too, I'm guessing.
Right, yes, yeah.
It is definitely harder to process,
and just as anyone, kind of tiredness,
when you're extremely fatigued or extremely tired,
it can affect you in lots of ways.
And with my invisible disability,
I actually tried to keep it invisible as much as I could
for a really long time.
I had bosses who knew and close friends who knew,
and if it got to the point with someone
where I couldn't hide it any longer, then I would tell them.
But generally, I never liked to share or talk about it.
I kind of just wanted to keep my,
I felt like it was a struggle,
and I wanted to keep it to myself
and just kind of get through what I was trying to do.
And so I only first started talking about it last September.
I entered an inspirational speaking competition
with a story about how my central core disease
impacts my life.
And that was the first time
I'd ever spoken about it publicly.
I had it on my social media,
I was promoting it because it was a competition,
and so people who I had worked with
for more than five years,
people who I went to high school with,
and elementary school with, people from old jobs,
like people, the most random intersection of people
in my life, had no idea that when they knew me
or if they still knew me, or still currently in my life,
had no idea that I dealt with this on a daily basis.
And so that was kind of like,
it's amazing how invisible invisible disabilities can be.
People can be right beside you
or working alongside you or your friends,
and people might have no idea what you're going through.
So what was the reaction?
How did people react when you shared?
What was their response?
Were you expecting a, I mean, think about it,
you're like sharing your life,
all of a sudden you're gonna tell people about something
in your life that you've struggled with,
you've tried to figure out how to manage, all these things.
I mean, I'm guessing you probably thought,
oh, I sure hope this comes across okay,
and then all of a sudden people don't think less of me,
right?
Because we know that happens, right?
We think about people with a disability,
we think, oh, they're doing something wrong,
maybe she should exercise more, why isn't she getting out?
She just doesn't wanna come to my event,
that's a big one, right?
She doesn't wanna come to my event,
she went to so-and-so's event, she must not like me.
I was terrified of sharing it, I was kind of,
I had to be talked into competing in the competition.
And I started out very baby steps.
I was like, okay, I'm going to wait, I'll write it,
like I've heard about it, I'll write a speech.
And then someone was like, okay, we'll just record it.
And I was like, okay, I'll record it for myself,
I've written it already.
Let's see, I barely even take selfies
or take videos of myself, so let's do that.
And then they were like, you should just submit it,
just admit it, just see what happens.
And I was like, oh my goodness.
And so I thought, okay, I've made it this far,
I did all the work, I like writing,
so I think that was part of it.
I was just like, I'll do this as a creative exercise.
And then I thought, okay, I did all the work,
I might as well see this through and do it properly.
And I submitted it and the whole weekend, I think,
I submitted it on a Friday,
and then on the Monday you're supposed to post it.
And I was terrified that whole weekend.
Like I was just like, this is gonna come out.
I don't know what I thought was gonna happen
or what the reaction was gonna be,
I guess it was kind of fear of people
are now gonna know this thing about me
that they can't unknown and will just always be,
like it is already always a part of me.
But I was used to keeping it so inside
and it was crazy to me that people would like,
they're just gonna know this about me.
Like maybe even before they meet me in person,
if they happen to see the video.
So that was a crazy concept.
But I had the most amazing reaction to my speech,.
I had no idea what was coming.
And just the comments that were coming in,
both from people in my life who were like,
wow, we never would've guessed, you're amazing,
I can't believe you do all this.
One of my old coworkers actually said that,
it's crazy I have 33% of the strength of the average person
because I'm their most,
well, I'm one of their most energetic friends.
And I was like, that is a crazy concept, that was exciting.
And then even the reaction of people from my Facebook group
for people with central core disease,
I think that was particularly touching
and particularly rewarding.
Because like I said, I've never met someone with it
in person and I may never because it is a rare disease.
But to hear the people in the Facebook group saying,
we've struggled to tell people in our lives
what it's like to live like this,
or what it's like to live with our condition
and what we deal with.
And you've summarized it so well and illustrated it so well.
I was like, oh my gosh, finally.
There is something very special about people who know you
and people who don't either way relating to your story,
but people who have the same experiences
and are seeing it reflected in a story that you're telling,
that was really something else.
Yeah, well that's pretty amazing.
So tell me, how did you find out about
Invisible Disabilities?
Yeah, so I, with another speech
for the inspirational speaking competition,
it's called Speaker Slam,
with another speech that I did in March,
I actually came in second
and I'm now going to the inspirational speaking
grand finals, the Grand Slam in November in Toronto.
I kind of thought,
well, my invisible disability is out there,
what else can I do with it, kind of,
on the road to the Grand Slam?
How can I make an impact or how can I use it for good?
And I didn't really know what I was looking for.
I was just kind of on Instagram one day
and I put in the search bar Invisible Disabilities
and Invisible Disabilities Association, of course,
with Invisible Disabilities,
this is the first account that came up
and I didn't know it existed.
I'm in Canada and I know that IDA is based in the States.
So I'd never heard about it before.
And I thought, well, this is perfect,
this is like exactly what I'm looking for.
And I don't really know still what I'm looking for,
but I know that this is relevant to it.
And this was the last week of April I believe.
And then a few days later after I followed,
I saw that the Walk and Roll was starting.
And so I looked into that and I thought, this, this is it.
It was very kind of universe telling me
to go ahead and do something different.
And I've never done a walking fundraiser,
I've never done any kind of fundraiser before.
But there was something about finding that
at the perfect timing
and it being what I was looking for without me knowing it,
that just seemed like a perfect fit.
Well, you know, yeah, we created the Walk and Roll-A-Thon
so that anybody could participate.
Because a lot of times you see walkathons
or maybe a bikeathon or those things,
but we wanted people to be able to walk, to roll, to trek,
to skateboard, to roll in their wheelchair,
to push a walker, to roll in their scooter, whatever it is,
because we didn't wanna limit people.
And that's why we set up one that's based upon steps.
it's not like, I don't know if I'm gonna walk a mile
or a kilometer or whatever that is,
but I can walk steps, right?
And so we set that up
What's fascinating is you talk about,
we're based here in the US,
we founded the organization in 1996,
and we launched our first website in 1997,
and we were all over the world.
I mean, we had articles in New Zealand and in Canada
and Great Britain and other places.
So yeah, it really is, even though we've been here,
we've always been on the internet,
which just means we really,
it's impacting people around the world, right?
There's no borders, no barriers.
And as you well know,
the disability is no respecter of anybody, right?
Anybody can have a disability,
and 80% of the people that have a disability,
you can't see any assistive device.
I mean, you don't usually use an assistive device,
you might use a,
I don't know if you use a walking cane ever,
anything like that, but, you know-
No. No, yes,
So you would have no idea, right?
So people just wonder why,
well, she seems tired all the time,
why can't she get out there and let's go do this
10 mile hike?
Talk about that, I did listen to your speech
and you were talking about,
you were having a date and tell us about what your date,
you were in a park and what did your date wanna do,
and tell me what happened on that.
Yes, so I was on the second date with my now boyfriend
and he suggested, we were in a park,
we'd had a bit of a picnic on the grass by the lake,
it was super cute.
And then he says there's a hill that we should climb.
He wanted to climb a hill to watch the sunset.
And there's a shortcut that we can take
that's a bit steeper and rockier,
but then we don't have to go all the way,
zipping around the paved path.
And I didn't wanna seem afraid of a challenge at that point,
it was very early on, only our second date.
And I always do try to push myself for things
that I want to do and tell myself that I can do.
And so I thought, okay, I can take this hill,
I can totally take this hill.
And so we started ascending the hill
and I was getting it, I was doing it.
We got to the top of the hill, I was super excited,
I was like, yes, we did it, my secret is safe, almost,
'cause of course, my concern was,
will I be able to make it up this hill?
What's gonna happen?
Am I gonna fall?
And that will be more embarrassing than saying,
let's take the long way around.
But we made it up the hill.
And as we start walking on the smoother ground,
I'm starting to feel really hot and dizzy.
And I realize that is the same kind of feeling
I've had when I've fainted before from overexerting.
And so I start slowing down and my now boyfriend,
he can tell something is off.
And so he's like, do you wanna sit down for a bit?
And I just kind of nod and he sets up the picnic blanket
on the side of the hill, and I am now like,
I wish we should have taken the long way around.
I totally pushed myself.
And now I felt like I had to explain why.
I wanted to kind of take control of the situation
and what was happening and explain.
So I was really scared to tell him
as I was talking about my disability.
And I thought it was gonna scare him off.
But he was really understanding, he was touched.
He said later on that he actually felt like
it brought us closer, that I shared that with him,
and he was really glad.
And of course, he was now able to plan dates
or plan things that were accessible for me.
And now that he knew that,
of course he wanted to do that,
and he wanted to consider me in what we were doing.
So it definitely, as scared as I was to bring that up
to a new partner,
it was definitely something that brought us closer together
and gave us more understanding.
Well, you know, I mean obviously I can really relate
to that.
My wife, Sherry she's had MS and Lyme Disease
and has been unable to work since she was 27 years old.
And everything we do, we have to plan around that,
and she told me right when we first started dating, right?
I mean it was one of the first,
kind of our first official group date,
we went out with a bunch of people
and she just laid it out on the line.
Because what happened is,
is yeah, there are people that do leave,
there are people that can't handle it
and disappear and those things.
And she was having that experience
because she wasn't sharing with 'em right up front, right?
So that was a really smart move on your part.
But ultimately, your energy,
what you can do is based upon where you're at,
not what I think you can do.
And I'm sure there's times you're thinking,
yeah, I'm gonna push myself,
but you can push yourself as hard as you want,
but you still have a limitation
that you have to be honest with, right?
You know, if somebody says,
hey, let's go run a 5K,
you're like, yeah, probably not gonna happen,
I'll do it over a week.
kinda like we're good with Walk and Roll-A-Thon.
But people have to be understanding about that.
Our vision at Invisible Disabilities
is called Invisible No More.
And what that means is we should treat everybody the same,
that's part of your life,
disabilities are not necessarily what defines us
in the sense of you're not central core disease,
but it is part of your life, it is part of something,
and we need to be honest about that too, right?
Sometimes I think that people forget that.
They think, well if you can only do this
or you just get out of bed or all these things,
it's like, no, I have my limitations, I know what they are.
There'll be times I might push myself,
but I'm gonna pay for it, like you said, you know?
I know people that do that, they have a good day
and they push it and then they're down for the count
for like a week, right?
Yes, yeah, there's definitely even things
that I want to do that I have to choose between,
I can think of so many examples of,
actually I think it was last year after the festival
that I ran, it's over Thursday, Friday and Saturday.
And so long hours, 16 hours or so days that I can do it
because I'm running on adrenaline during the weekend.
But then it takes me about a week to recover.
And the following weekend
was my friend's son's first birthday party
that I hadn't fully committed to.
I was like, it usually takes me about a week to recover
from the festival, so let me see how I'm feeling,
I really want to come, of course, a close friend,
her first son, it's his first birthday,
I really wanted to go.
And then by the time of day came, the next Saturday,
I was still so sore and I was still so tired
and I had to tell her, I was like, you know,
I really, I really wanted to come, I was really excited,
but I can barely move,
I had really just had to stay home today.
And so that was kind of sad, that was disappointing.
And that was disappointing to have to make that choice
between something that I wanna do, the festival,
and then something that I also wanna do
that's a full week later,
that I thought maybe I could pull it together
and get through, but kind of accepting that my body
has to take breaks now and then
and takes a little longer to recover.
And that I can't do everything I wanna do as much
as I wanna do it.
Well this is where that relationship with a friend,
you have a chance to share what you're going through,
and so it's creating that understanding.
We talk about it here at Invisible Disabilities,
where when you invite somebody to Thanksgiving for example,
which we have in the States here,
it's like, it's okay to set up a time with 'em,
say it's okay for them to say no
and maybe say no almost every time, right?
And then when they do show up to whatever the party is
or the event,
don't make the assumption that they did it
because they're doing better,
they did it because they wanna spend time with you, right?
Yes.
And so it's. you must be doing great and everything.
It's like, no, I'm gonna be wiped out for another week here,
but I just had to do this.
Well, that honesty and allowing people
and feeling safe to be able to do that,
you were able to share.
It's like, hey, this is just how it is,
and they're like, okay, I'm your friend,
now I understand that,
'cause there's gonna be times that that's gonna be an issue.
Yeah, I'm very lucky that I generally have
very understanding friends and family.
But I think it's still something I struggle with
in terms of, like, for example,
I show up to things as much as I can,
but sometimes I'm late and people might just think,
oh, Lauren's always late, she's running late again.
But people don't realize that sometimes
a lot of the time I'm late
because I'm dealing with daily fatigue and body pain
and I'm just moving slower that day
because maybe I did something the day before,
or maybe I'm just having an off day
and it's taking me a little longer to get going
and I'm also sometimes overly optimistic
about what I can handle and achieve that day.
So I'll always show up, I wanna show up,
I'm just sometimes a little bit late
because I'm battling my body with it.
Well, and I think that's great
and I think that your willingness to share this even here
and how it's gonna benefit a lot of people to understand
that hey, they're not alone, right?
Disability impacts anywhere from
15 to 20% of the population,
invisible disability is about 80% of that.
You can't tell by looking at somebody
and it's really up to them to share
what they're going through.
And I always say, hey, if you wanna know about it, you know,
it's like, well what is central core disease?
What is that?
And if a friend is a friend, they'll say, tell me about it,
I wanna know, I don't know what it is and share with me.
And it gives you an opportunity to really share with them.
And there's gonna be times,
and I would guess in other people's lives,
where all of a sudden your empathy is so huge
because you're like, oh my goodness,
what you're going through,
I understand in some sense, right?
And it's not always...
I always like say, unless you've been there,
you don't really know,
I can't understand the pain
that my wife is in on a daily basis.
I mean, her pain scale, it might be a four
and on me it would be like a 20,
I would be out cold from the pain that she has to deal with.
But it is just trying to each day,
to understand how you value a person, right.
Because really it's your value that's most important,
and that value is not based upon what you can do
or can't do, it's you as a person.
We call this the "InVisible InCourage Podcast,"
so what we always like to do is ask our guests,
what gives you courage to make it through the day?
And it's not about making it through
like your festival over a three day weekend
or through that whole season
or making it through the week or the year,
what does it take just to get through the day?
Yeah, so to get through the day,
I think I actually never thought about it as courage.
I kind of have always just been,
this is my life, this is where I'm at,
and I just have to get through it.
If I want to have a certain kind of day
or if there's things I want to do,
I feel like I've never really thought about it,
I've always just kind of done them.
And so it's actually kind of exciting
and feels good to hear that it, yes, like,
I mean, externally when I think about it,
of course people with invisible disabilities
or visible disabilities have a lot of courage
to deal with what they're dealing with.
And somehow I never really thought to apply that to myself.
So I just never, I was just like,
this is my life and this is where I'm at.
But I think just keeping moving forward
is really what kind of does it for me.
Well we're so thankful to have you
on this "InVisible InCourage Podcast,"
and for walking and rolling and getting people excited.
We can't wait to hear about your next speech
and hopefully you'll be winning the Slam
and you got a great story.
And it's just amazing that your opportunity
to share the story, how the impact it has on others.
And like you said, it really makes a difference
and we really appreciate it.
And thank you so much Lauren for being on here.
Thank you so much for having me, this was so much fun.
I'm so honored to be a part of the Walk and Roll,
and to be here right now, thank you so much.
(upbeat music)