Jeremie is looking for something to define his life.
It would kill him to see it fail.
Jeremie is all in. 24 hours, seven days week.
Yeah, Jeremie is definitely obsessed.
What?
I'm 29. I'm almost 30. I'm not gonna have a kid, so this is my kid.
Yeah this is all I know, but everyone has things that
are challenging in their lives.
And people try and hide those things.
That's such a hard conversation to have.
We were never a family that talked.
How much of how I am in this relationship has
to do with the fact that I know he has an expiry date.
If all of us are affected by illness in some way
then why can't we just talk about it?
What do I say? You're amazing. Kudos.
We're awesome.
Welcome to Sickboy, a podcast where we talk about what's like to be sick.
This week's guest is Neil. This week's guest is Carole.
This week's guest is Jim. He has PTSD. She has epilepsy.
He has leukemia. Let's talk about it.
Today is my 29th birthday. It's a big day.
It's a big day because I probably shouldn't be alive.
Everybody is always like, "I'm turning 29."
It's so weird, I'm 29.
Cause I'm like, I'm 29. I'm almost 30!"
It's like a ... It's kind of like winning the lotto.
How am I not dead yet? How are you not dead yet?
We're doing all right. We're not dead.
I like your little clatter toes
You should say happy birthday to your parents.
Happy giving birth to me day. Yeah.
Yeah. There's no way that you would be turning 29
if it wasn't for the 18 plus years
of them enforcing a certain lifestyle and value system
on you that you have. They are incredible people.
You still sick?
Hahaha. Are you?
My name is Jeremie Saunders.
I have Cystic Fibrosis and it's going to kill me.
Cystic Fibrosis is a genetic, fatal disease.
The lungs are constantly filled with fluid,
or mucus and this mucus causes scarring.
Over time, that scarring builds to the point
where the lungs stop functioning.
When I wake up, first thing I have to do is a nebulizer.
That vapor essentially goes into my lungs and breaks up all the mucus
and it allows me to breathe.
Besides all the different ways Cystic Fibrosis
affects me, it has also made me infertile.
Give it one breath in.
So we're gonna move through the flow.
Exhale, windmill the arms. Plant the hands,
step back and come down. Chaturanga.
My parents were essentially told I wouldn't
live to see my 25th birthday.
Living with disease sucks. Cystic Fibrosis sucks.
It's really easy to let the negativity wash over you,
so I challenge myself to look at it from this other point of view.
Laughing about a disease takes away its power
and I just want everybody else to find that too.
Dude, your hair looks so good.
His hair does look really good.
Dude how good does that look?
Yeah. Well now I'm the long haired sick boy.
You see five pills? Now you don't.
That's because you put them in your mouth.
Bah-boom.
Hey Carole - Hey - How are you doing? - Hey Carole - Hi.
Welcome to the - My name's Taylor - Carole
Nice to meet you. I'm Brian - Brain.
Taylor recently got his hair cut. I'm Jeremie. Nice to meet you.
Yeah. Looks good.
Check, check.
Sickboy is a podcast that I started with two of my best friends;
Taylor MacGillivary and Brian Stever.
We just want to talk about being sick.
What's it like to have brain cancer,
diabetes, bipolar and so on and so on and so on?
When you feel that warning come on are you like
Okay, gotta prepare my seizure bed?
And like, lay down on ... create a pillow or something.
When I woke up, I was half out of the elevator And half in the elevator.
More in the elevator than out and the rubber
on the elevator door was hitting me. And like-
Oh my God.
I went face down so my nose, my teeth, I'm literally like - Oh no.
Oh no. I'm just imagining the door going ...ding, ding.
I think that for sure, everyone is dealing with something in the sense
that if they themselves don't have an illness or a disease then they
know somebody very close to them, very close to them who does.
I think the common thread through everything is that everyone's
got their own story and what we're trying to do is not speak to the illness.
We're not trying to talk about, what is the illness that you have,
we want to know about the individual's experience with that illness.
Sickboy all began at the Halifax Central Library and it started,
really as a joke. It was a free pass for two healthy people
to ask all the questions they would ever want to ask a sick person.
This might be the worst thing that I can possibly say in this moment but,
Please say it.
Would you say that CF is the equivalent of like YOLO?
Oh my God.
Bro, bro, bro, bro, bro. it's so YOLO.
You know, you only live once I've got CF.
Absolutely. As dumb as you phrased that question,
you are absolutely right. When you're friends don't wanna go out
and have a good time. You know you're feeling like you wanna go,
have a few drinks...Definitely pull of the, "guys I have CF
and I'm gonna die soon. And you're saying no?"
It does speak to how comfortable a couple of friends
can be with each other to like... throw that out there.
And me to know that you're joking. (laughs)
But not really. Like I am joking but not, not...fully.
The first episode with Jeremie was pretty well received.
We went from having no one knowing what our website was to well over 10,000
people viewing the website within 24 hours.
It was like whoa, these people think that this is cool?
Okay. Let's work harder at it. It was a joke.
"Take one"
We went and used free equipment at the local library.
We knew the only way we're going to be able to do this
to do weekly episodes is, we're going to have to fundraise
to by our own recording equipment.
During our Kickstarter campaign, one of our rewards
was that if somebody donated $1,000 then Jeremie would get
the logo of Sickboy tattooed on his ass.
That was our surprise.
And tonight Jeremie's going to get the tattoo live. Right here.
(Cheering)
Ow (muted) ow
We knew Brian's mom had an empty room in her basement so we took
all of our brand new gear and we moved it over there.
Check. Check. Check. Check. Check. Check.
if it gets into your bone or into your blood stream,
like your marrow, you're (muted)
Whoa.
Basically, either you're going to lose a limb or you will die.
I absolutely do not consider my borderline
personality disorder a weakness or a personal failure, at all.
Right.
I think the fact that stigma is a social construct,
I think that means though, it could be
dismantled through conversation.
Yeah. Yeah.
It can be dismantled through these kinds of activities.
These three guys, they aim to rip that lid
off those awkward conversations.
Most people that are sick have responded
and have been really thankful there is a discussion
going on that's not super sugar coated.
I woke up at five in the morning.
Had to go to the washroom.
My pee was a Coca-Cola color.
What?
I shrieked.
I knew you were going to fill in the blank with a colour.
And you said the grossest thing I could have ever imagined.
We've started this interesting little club of sick people.
And I feel like I have a lot to offer, to teach people,
about the benefits of just being transparent.
And there is like no time to waste.
I know the end is coming. It's right around the corner,
So I'm steam rolling like okay,
I've got to get this done, got to get this done,
got to do this, got to do this.
I kind of actually get off on the idea that like ...
Okay, sweet. I can just let go.
Do you want to die?
I'm curious to know. I don't want to say that because
I don't want to sound like-
You don't get to try it.
No. I know. I don't want to die but I am-
What are you curious to know about?
That wasn't the right way to put it. I'm not curious about it.
I'm content with dying. I'm okay with it.
It's 8:41 and my sister had a baby.
She named him Hudson Jeremie MacEwen
so he's kind of named after me.
I'm a mess. I'm going to go hold him for the first time.
I want to hit critical mass and I want it to be an epidemic.
I want the CDC to warn everybody. Sickboy is coming.
We are doing a great thing on a small scale right now
but how do we grow outside of that bubble?
You guys need to be taking risks to keep
pushing things forward. I think
If I was like, "I am quitting teaching yoga and I'm going to put
all my time into Sickboy". And I said to Bryde like,
"Yo I'm quitting teaching to do this and we're not gonna
make any money on my end until it gets to a point".
She would literally go, "Ok then, I'm leaving you."
Do you think she would actually say that?
So I brought it up to her the other day.
And I was like "listen" And her response was,
"well you can do that. But you have to give up your car,
no more this, no more that like, what are you willing to give up?"
Like, I'm not going to have a kid.
That's not going to be my legacy right?
I'm not going to leave a human. So this is my kid.
This is me going like, this is what I want to
give to the world to contribute.
(Coughing)
I do worry about his health in the way that
Cystic Fibrosis can take really drastic turns, really quickly.
Even if everything stays the same with his health.
His lungs are decreasing in function.
These are my meds.
It scares me when I think about.
Oh God. This is all the stuff that
keeps my alive.
This will be gone in 100 days.
He's trying the best that he can,
to give everything to Sickboy.
It's like if there is ever an opportunity in his life
to create something that he is beyond proud to say that he created,
this is it.
I'll just eyeball it.
Smells like egg nog
You gotta get some air in it.
There that's a little better.
Got it.
We got married when I was 27 and Jeremie would have been 23.
I thought I was going to marry the person
I was with before and would have and
Jeremie came along and then I did it with him instead.
I promise to use out combined love to cause
positive change in the world and in the lives of others.
When I asked Bryde to marry me.
We both knew what would come with that
if she said yes. Which she did.
We now pronounce you husband and wife.
So it's funny record this podcast and I talk openly
about my disease with strangers, but one person
that I don't really go in depth and talk
about my disease with is my wife.
We haven't really talked about it.
No. Only within the context of a joke.
It wasn't my goal until after we started the podcast
but I started to realize, this is a good way to
make sure everybody's fully prepared for my death to come.
If I just keep talking about it and being like,
"Yeah. That's what's happening. That's what's going to happen.
You're probably all gonna out live me".
It just becomes this, I don't know, not a big deal.
Bigby.
He's just living his life.
He's like me.
No regard for other people.
Talking about my death Bigby. Stop cleaning yourself.
You selfish dog
I wonder if Bigby will out live me.
He won't. Come on.
It's very confusing sometimes.
How much of how I am in this relationship has to do with
the fact that I know he has an expiry date.
Jeremie is all in with the podcast. Night and day. 24 hours a day.
Seven days a week.
He forgets to make time to prepare his own food
and to walk the dog and to teach yoga, which is his income.
Sit. Good sit. Bigby. Good boy.
Right now, in the choices that we are both making in our life
have impact on both of our futures and even though mine
may be longer than yours, I still need support
for my dreams and my future
even though you might not be a part of them.
Sometimes I feel like I'm being really unreasonable
and a total dick with Bryde
because of how much I want to give to this project.
But I think she gets it. I think she's on board too.
I hope she is, cause if she wasn't I
As of today, the podcast started about a year ago
and I had always hoped that we would have an effect
our guests but I never realized how much the
guests would have an impact on me.
In particular, there's one guest that we had on
and his name is Layton.
Layton is dying of terminal cancer.
So Layton.
Hi.
Hi. Why don't you tell us why you're here.
Cause Brian asked me.
Yeah. That's right.
I've got a couple brain tumors.
A couple.
I think they said there was two small ones
and two not so small ones.
I'm just going to go day-to-day and everything's going to be cool
until it's not cool. Yeah. That's the case.
He is a young father and he has a wife.
Watching him go through his process and the pictures
that he's taking and the outlook that he has,
I can only imagine that that makes it infinitely
more tolerable for his wife.
I am very curious about your relationship with Candice
and how this has affected that relationship.
We talked about if we would have known what was going to happen,
would we do the same thing? She's like, "Yeah. Of course. Obviously."
It's a lot easier for her to deal with it because she has this token.
He's half of me so I'm living on through him
and it makes it a lot easier.
Honestly, I'm good where I'm at. Yeah.
I'm really just now starting to learn that the people in your life,
when you're going through something so hard and so challenging,
they're being affected just as much as you are.
Come on Jeremie. Big hit Jeremie.
Keep your eye on the ball.
Go for it batter! Run Jeremie! Run Jeremie!
Good hit Jeremie. Good hit.
All right batter. Big hit batter.
He was always a good baseball player.
He played it for a couple of years
and then decided to go soccer was it?
Yeah. Let's have a look.
Lots of stuff.
There's a little bit of everything in here. Back in June 2006.
Yeah. He did some singing back then
Did the valedictorian speech.
He won the school's pageant for boys.
I can't think about Jeremie dying every day when I wake up.
I have to think about Jeremie living
and that's the way it was right from the beginning.
I recall being told he may not live to see his 19th birthday.
Chances of him seeing a university are slim and none.
What camp?
I don't know where we're camping. Where are we camping?
It's a beaver camp down on lake George.
A beaver camp. Lake George.
Yeah. Jeremie, stay on that. Don't turn that off yet.
I think for us we couldn't think there.
We just wanted to stay in now and keep him, maybe there's
a way that wont happen.
I was quite big on a camera.
This is our first camping trip.
I just wanted to try to capture his life as best I could
for as long as I could. Jeremie as a kid, he was the clown.
He wanted to be in front of the camera all the time.
He'd make the funny faces.
He had no problem pumping up his muscles.
He was doing it all.
I'll show you fat!
I don't have it on here. I don't have it on there.
Get your fingers off the camera please.
The doctors tell us that if your lungs fail
then you're going to fail.
Show papa how he does pushups.
So we felt, we won't let his lungs fail.
If exercise has anything to do with it,
we'll just push him as hard as we can push him.
one, two, three, four, five, six, seven, eight-
110% is what he had to give. Good boy.
He kept up with the normal kids
and that was the whole focus here.
Don't let the CF be something that's going to drag you down.
Oh man, he loved that canoe.
$3,000 canoe from a shopping spree straight from Poland.
Hello! Hey Bigby. Jeremie. Hey. How you doing man?
For some crazy reason, which I'll probably never understand,
my parents chose to not tell me that Cystic Fibrosis was a fatal disease.
So for the first 10 years or so of my life, I had no idea.
I came across a pamphlet or something that you took back from clinic.
It said CF is a fatal genetic disease and then, that followed up with
Cystic Fibrosis ... the average life expectancy of someone
with Cystic Fibrosis is 30 years of age
I think I just put it down and
"uh." I walked away.
No. I never talked about it. Never talked about it.
We were never a family that talked.
I struggled with trying to accept the fact that
he'd live with CF for all those years.
If we can't put our head around it,
how are we gonna help a child put his head around it.
I don't think I knew how to handle that situation
and so what I did was, I just buried it
and I never told my parents that I knew.
That stuck with me until I was about 16 years old.
I wrote it down in an autobiography I was doing for school.
"When it comes to thinking about my future,
and what I want to do with my life
when it comes to getting married and having kids,
I don't really know what to think.
I don't mind talking about my CF and explaining what it is
but when I sit and think about the things like,
what's the point of having kids
and who would want to marry someone
who they know wasn't going to live ..."
This is tough.
"Those are the kinds of things that are hard to think about
and it makes me feel kind of useless."
It wasn't until my early twenties that I was actually
able to forgive them and actually acknowledge
I was a total asshole to them because of it.
I feel like now, if I ever had to tell Hudson,
"You might not live past 20 or 30,"
I would never be able to tell him that.
That's such a hard conversation to have.
Right. I feel like if it was just normalized right from the beginning,
We're all going to do this thing,
which is called die and every one of us is going to do it-"
I think that because we never talked about it,
Sickboy, this whole thing that me and Brian and Taylor created,
I honestly don't think it would exist.
I think that that experience played a major role in me being like,
all right. Let's start a community that we
over the top, talk about everything.
I have all of the episodes in order of what we're releasing,
all the way up from what we've recorded already.
Oh really
In a schedule.
We should come out with a stronger episode next week.
Yeah. I agree. Yeah. Maybe following that we'll do Connor.
I think it's so much easier for people to come in
and talk to us here because we've cultivated this space.
They know they're coming on Sickboy.
I get that it's easy for me to sit here and say,
"Everyone should be an open book,"
because I do recognize that it is difficult.
I know that Brian's mom was recently
diagnosed with cancer and in all honesty,
Brian hasn't even spoken to us about it at all yet.
My mom probably knew where she was in her diagnosis
but I was still kind of left in the dark,
which is really weird because we've been doing this podcast
for the last year and a half and talking to complete strangers
about what they've been dealing with and we've
talked about really difficult issues like living with cancer.
I guess I really just don't know how I feel about addressing it.
When you're really forced to consider the things that
will change your life forever, then it's something that
can be really scary.
Did you see that email that said that
somebody thought that the little person episode was the best episode
I saw that. Yeah.
We've ever done.
Yeah. I did.
I wonder how many episodes that person listened to.
Only that one.
Best one yet.
So what's up with your mom?
I mentioned to you that they were testing
to see if it was in her lymph nodes.
Yeah.
She didn't tell me about that.
Wait, she didn't tell you they were testing for that?
No. I'm kind of on the mindset of,
I can either bring it up to her and say,
"Hey, I think you should be more open talking to me about this,"
or, I can just say, "Okay. You feel that you want to protect me
by not addressing this and dealing with it on your own."
It shouldn't be something that's difficult.
I guess the whole build up of it is the thing that's kind of like-
Let's bring it up. It's going. It's going. Hey.
That's the tough part, going, "Hey. Can I talk to you."
We're sitting here. We're talking about how your mom
hasn't come to you and hasn't talked to you about
x, y, and z but also, in the exact same breath,
you haven't approached-
I know.
You haven't called your mom out on it.
This is the real life example of pretty much,
what we talk about on the podcast and it's so much
easier to tell somebody else to do it than to do it yourself.
It's so much easier offering advice
that even taking the own advice that you offer.
A lot of the conversations that we've had about your cancer
have been really about the physical procedure of it but,
I don't think that we haven't had any talks
about the emotional challenge of dealing with it.
So how have you felt?
Sad sometimes. Afraid. I think that if you know I'm afraid
or I'm sad or I'm scared, then you will feel that as well
and I don't want you to feel that.
Do you think it's okay to be sad and afraid and scared of that
because it's the reality is that it's an awful thing.
If we would have had this conversation before and you said,
"Hey look, there's gonna be some stuff that I go through
and I just don't want you to see me dealing with
that but I have other people who are gonna be
there and support me, then I just would have thought
nothing of it and would have stayed away
but the other thing is that I just really wanted
you to know that I'm here if you need me, right?
Okay.
Yeah. Right. I love you.
I love you too. And we can hug.
(Cough)
This thing, like this feeling here.
I'm breathing like a (muted) grandfather.
Yeah.
You know? I can't ...
Thinking about Jeremie dying.
If I really go there.
I can feel oh yeah I do have an emotional reaction to that.
Sometimes I worry that I won't
Or that I'm over thinking it as to numb myself to the idea.
But I know the day will come.
How did you guys find out?
Dude, I read the Facebook post.
From his Facebook?
Yeah.
Someone wrote it.
His wife posted it and he wrote it.
He wrote it?
Yeah.
Layton died with such grace
literally being an inspiration for so many people.
The feeling is like, the people that are going to miss him
I'm always like, "Yeah. I'm not afraid to die.
Like, bring it on. Like, I hope I don't live past 40."
I'm driving over here thinking about Candace and Finn
and I have this overwhelming sense of like,
"(Muted). I don't wanna die."
I don't want to do that. I don't want to do that.
I don't want to do that to Bryde or you guys or my parents.
You know?
With Layton passing away, finding out that our past guest,
a friend of mine, Matt, his cancer came back
I've just been feeling really stressed out.
This is something that I think, just due to the nature
of what we're doing, we're going to have to deal with a lot more.
We have a list of over 300 applicants.
People all over the states, all over Canada.
Anxiety. Depression. OCD. Chronic Fatigue.
Heart disease. Genital herpes. MS.
It's like everything you can think of, we have someone.
What totally sort of kills me is that I know that there's
no way that we'll get all of these people on the show.
How did I get here? How did I get to this point?
Compared to a year and a half ago when I was glued
to the couch playing video games.
What? You know?
We start this podcast off as a joke.
And the next thing we know were get an email from a listener
who believes in what we're doing so much that he wants to
fly the three of us to Toronto.
So we can break into a new community
and try to put a dent in this list of 300 people
who want to apply to be on the show
Test one, two, three, four, five, six, seven, eight, nine,
We are live in Toronto.
According to some of my gentlemen friends,
my odd shaped mouth is quite a fun
and rewarding experience.
Oh yeah, this is one of my favorite starts this is great
Yeah this is all I know but everyone has things
that are challenging in their lives.
People try and hide those things
but it makes us all different.
We're all different in this whole room.
Embrace those things and let them sparkle.
We definitely forget, you know,
we're connected more than we understand.
And the world would be a lot better off if we just tried
to listen to other people's stories and what they are going through.
Even if it doesn't make sense to you.
And I think what you guys are doing is giving it that platform,
so thank you. I'm proud of you guys. Killing it.
Thanks dude.
(crying)
Bri, should we record?
I don't want to.
I know man. I know.
Yeah, it was just really unexpected, you know?
I guess death really is always unexpected.
And I'm glad we canceled our last two interviews
just to take time to process that information.
Seeing that hurt or being on the receiving end of that hurt
in a very small way, is something that I'm,
yeah.
Hi big buddy. Hi big pal.
I think this attitude with being super content
with the idea of dying, it's a bit of a selfish attitude.
I gotta try and be a little more conscience
and attentive of the people that I love while I'm here.
This conversation has been a long time in the making,
we've been taking about having this conversation
Probably since the very beginning.
Whooo my wife in on the show.
Hi there
I like!!!
Guys hey, I'm right here, Jesus.
You know that he has CF before you guys even
get intimate or have any type of relationship.
What is it like when you start to fall in love
with somebody who you know has a disease
that limits their life expectancy?
Well the thing is that, I've lost people that I love before
and so I feel like grief is a price of loving someone.
That's so perfect.
It's the price that you pay when you take on another ...
So don't ever love anyone.
It's not worth it. It's not worth it.
Um, I started to feel this thing that
I only recently identified, which is that,
I really love this person. I think he's a life changer.
The podcast, even though we've had some balance issues
in our life since it started, never for a second
have I been resentful. I'm just really happy for him.
If you are going to love really fully,
then it has to come with that knowing that
it could be taken away at any time.
I don't know how the hell I managed to find someone like her.
She is still choosing to stand beside me
and support me in any way that she can.
And I thank her for that.
I support Sickboy 100%.
I had no idea it would be as successful as it is.
I didn't know it would me anything to people the way that is has.
Most people don't know how to sit and talk to someone.
Your podcast is teaching me, is teaching me
how to have those conversations with patients.
And it was in one of those last flare ups
that I found the Sickboy podcast and realized
that I'm not alone and it gives me
the strength to keep on going
I'm more comfortable now, with one leg,
than I ever was with two and I feel like
I owe that to Sickboy.
What do I say your amazing!!!
Kudos! Good job fellas.
I discovered your podcast just after I got out of the hospital
and I'd been made homeless due to a domestic violence
issue and it was the lowest point in my life
and listening to you guys have a laugh as well,
brought a smile to my face when I really didn't know
how I was going to smile again.
I feel like Sickboy podcast has opened up my world
to being truthful to others and also honest to myself.
We're awesome.(Laughing)
I feel like every time somebody says that we've taught them something,
it's like a total mind blowing
Dude like
The thing about living with a terminal disease is that,
you know if you do choose to own it
and you start to live your life ambitiously,
it's this sigh of relief, like we can just be open
and talk about all of the stuff that we jam down so deep.
And until that expiry date comes, I am not going to stop.
Not until we make more people realize
that laughing at a disease takes away it's power.
If you really sit and actually think about that,
it can have some pretty profound effects
on the way you live your life.
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