Death is a funny thing. I mean, actually, laugh from the guts funny. Or at least it is to Jeremie Saunders, who, technically, should have already died.
Saunders was diagnosed with cystic fibrosis when he was 18 months old, but didn't find out it was a fatal disease until nine years later. At that time, the life expectancy of someone living with CF was 20.
Following slumps of depression, a defensive childhood, and a fuck-you attitude towards his shortened lifespan, Saunders—now 29 years old—decided to launch a public discussion on disease, death and the people it's affected. Saunders teamed up with his two best friends, Brian Stever and Taylor MacGillivary and Sickboy was born.
Saunders studied theatre at Ryerson University and previously hosted a CBC Kids show (Google Artzooka! for fun). He says the idea for the podcast came to him almost instantaneously while sitting in on a Kevin Smith lecture in Halifax a few years ago.
"What [Smith] said was, 'podcasting is this brilliant form of creative expression, and the reason it's so amazing is because everyone in this room can start a podcast today. If you have a cell phone in your pocket and one topic you're passionate about, you can start a podcast.' And it was in that very moment, I was like, oh, I should start a podcast called Sickboy and talk about what it's like to be sick. Just boom, right there."
Fast forward to 2017 and now they're nearing their 100th podcast, as well as the second anniversary of their inaugural episode, and, this fall, they'll be the stars of CBC's Sickboy documentary. From flesh eating disease and anorexia, to brain cancer and HIV, Sickboy has covered it all.
Saunders is now just months away from his thirtieth birthday, and if he lives to see it, it'll be a middle finger to the disease that's plagued him his whole life. I spoke with Saunders to discuss dying young, living with CF and what it's like to live each day like it is truly your last.
VICE: What is the goal of Sickboy?
Jeremie Saunders: I think the goal of the podcast can be broken down into one of several different things. Selfishly, it just gives me an opportunity to have fun and get to know people. [But] the goal of the podcast as a whole is to fundamentally change the way we all think about talking about things that are challenging.
What sort of challenges or stigmas have you experienced growing up with CF?
In terms of stigma, I didn't really face a whole lot. Everything I did, I made sure that I didn't stand out. Physical activity was really important. Thank fuck my parents gave me absolutely no choice in making sure I was physically active growing up. So I lived this crazy active lifestyle which kept me really healthy.
My biggest issue with the CF was the shame. Just being ashamed—which is why I put so much effort into covering that up, so I didn't have to talk about it. But whenever I would bring it up, I think I really liked to bring up the fact that it's a fatal disease, but people [would] get really uncomfortable, and that would sort of change the way they would feel like they need to interact with me. And that would perpetuate that drive to be like, "well I'm not fucking different, so treat me how you will, but I can do anything you can do—and you know what? Probably, I could do it fucking better."
How does it affect your day-to-day compared to somebody with fully functioning lungs?
I take a bout 40 pills a day. I spend 45 minutes to an hour in the morning and 45 minutes to an hour at night doing a treatment that keeps my lungs functioning.
If I'm under the weather, as of late, I'll get winded pretty easily. Walking up a hill, I'll be like, shit I'm out of breath, which is kind of a bummer, because that's kind of new. But I mean, the biggest thing for me is that my lungs are slowly but surely declining. So every year, I'm getting a little bit closer to them shutting down. And though it's a very slow, drawn-out process, it's a very noticeable one whenever I check in every couple months.
You're a yoga instructor, and you're openly in a non-monogamous marriage [with your wife, who also teaches yoga]. That sounds like a dream. Do you think that's fuelled by this sort of 'live life to the fullest' [mentality] because you have a shorter life expectancy?
My wife introduced me to yoga. She's been teaching yoga for over 10 years. When I took my first class, I was immediately drawn to it because of the heavy focus on breath awareness, and I knew that a practice like that would just help elongate my time here.
[So] we fell in love and got married at a very early age. When I asked her to marry me I was 22 years old. I've always said that if i didn't have CF, I wouldn't have asked her to marry me then—[I] probably would have waited a little longer.
Do you feel like you're trying to do everything in a condensed period?
Everything. Since my teen years, I've had this notion of 'don't squander your life. Move now.' Because you don't have that long. So get in all the opportunities you have to experience life.
It's kind of nice in a way—like having this illness has just allowed you to grab life by the balls at every second, where so many people go their whole lives waiting and hesitating or just living in this monotonous rut.
Yeah, it stems from the fact that I was kind of forced to mediate on the fact that I'm gonna die. But, we're all gonna fuckin' die. And we all have that ability to just sit down and think like that, but we choose not to. But just because I have this number looming over my head—like, 40 years old—that's not a lot of time. I've got like 10 years left.
Is that the actual number your have in your head?
That's the number, yeah. I think if I get to 40 I'm lucky. And if I go beyond 40, that's bonus.
People are living longer than they ever have in the past, thanks to medical advances.
When I was born, my parents were told I wouldn't live to see much beyond my twentieth birthday. And when I was 10—which is when I learned CF was fatal—the expectancy was 30.
So when you're 40, maybe it'll be 60.
Maybe. But I don't wanna live that way. It's gotten to the point now where I'm really turned on by the idea of living a short life. I don't wanna get old. I know that if I didn't have the mindset that I've had since i was 10, I would be a much different person—and I don't think I would like that person.
It's sort of like a Peter Pan mentality.
It kind of is. I wanna age, but I don't wanna get old. I wanna check out early. To me, everything boils down to quality over quantity, because I know I probably don't have much on the quantity side of things. So I might as well make the most of it while I'm here, hence asking Bryde [my wife] to marry me and then be like, "OK sit tight, I'm gonna go on a three-month whitewater kayak expedition and I'll see you after that, and we can figure out the marriage thing." And then coming back and being like, "OK sweet, that was crazy let's do that again but [this time] I'm gonna go away for a month of yoga teacher training and then when I come back, then we get married."
And then pause again and say 'hold on—can we do this non-monogamous [thing] too? Can I fit all this stuff in?'
Yeah, exactly. That definitely plays a role in it, but there's more to it than that. My sex drive is like I'm on crack, and in [Bryde's] mind, she's like, "you're not around for that long, so go sleep with other people." Anyways. I don't wanna get old.
Do you guys talk about death? Do you talk about your funeral, or your will?
I haven't filled out my will yet. It's something I've been meaning to do. I have all the stuff, I just haven't done it yet. I don't really have that much though. [It's] like, who's gonna get my Force FX Lightsaber?
Do you think you actually think about death more than the average person, knowing, like you said, that we all are going to die and we don't know when it's going to happen?
I think so. I think subconsciously I think about it more. I'm a very impulsive person and I blame that on this notion that I'm going to die, so it informs my choices; my decisions. I rarely allow myself to get lazy.
Do you believe in an afterlife?
The creative side of me does, but the rational side of me doesn't. I think you get one chance and when you're dead, you're dead. Your body just becomes the earth—you cease to remember, you cease to experience, and that's it. I'm not a very religious person. I'm a pretty spiritual person, but I mean, what the hell do I know?
Are you scared?
No. Not at all.
I mean, that's really easy for me to say sitting here drinking beer with you with the sun outside. If I'm laying on a hospital bed and my lungs are filling up with mucous and I feel like I'm drowning, I might have a different feeling towards it. But right now, I'm not. I don't remember the last time I was scared of the idea of dying.
It's funny, people away say, 'what if you only had one year to live' or whatever, and you think of all these situations, all the things on your bucket list, and you've been doing that your whole life. You're just soaking up as much life as you can.
My whole life's been a bucket list. I feel like I've done everything I wanted to to. Now it's all bonus.
So to go back to the podcast, you guys cover everything from brain cancer to PTSD and everything in between. Who have been some of your most memorable guests?
Matt, our second episode. He's a good pal of mine, and he had brain cancer. Matt was one of the funniest peopler I've ever met in my life. He was a force in the community. When we finished that recording, I remember saying to the guys, "this is what we need to strive for for every episode from here on in."
Matt recently passed away. And his episode was so memorable because of how important of a role he played in moulding Sickboy into what it was, but he was also one of our first guests that died. And his death was this really kind of shocking awakening [when we realized] that the longer we do this project, the more we're going to experience grief of friends. We've had three people die so far that have been on the podcast.
How long do you want to keep Sickboy alive for?
Long after I'm dead. This is my legacy. I'm not going to have kids.
Kind of a silly question—we are who we are, I guess. But is [your diagnosis] kind of a blessing in disguise?
Cystic Fibrosis is the best thing that has ever happened to me, bar none, period. It fundamentally changed the way I live day in and day out. It's given me the impetus to accept my own mortality. It's given me my sense of humour. It's given me my drive to want to create. It's given me the people in my life. It's given me my wife. It's taught me some of the most valuable lessons that we could ever ask to be taught.
We're all gonna die. Just because I get to the finish line before most of the people in this room, who gives a fuck? Just to experience more? What if everything you experienced was perfect?
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