Stuck 'like a cork' in the Bastard's Crawl, a Canadian caver's 18-hour ordeal to stay alive

Guests: Andrew Munoz, Jill Heinerth

SOUNDCLIP

RESQUERS: How many of you? 13. Brilliant, we are coming. It's okay. Many people are coming. We are first, many many people are coming.

Voice 1: What day? What day is it?

RESQUERS: What day is it? Monday. You have been here 10 days. You are very strong.

MF: The flash light flickers in the darkness. But there they are 12 boys aged 11 to 16 and their soccer coach. They look thin and scared. They are barefoot. But after more than 10 days underground, they are alive.

SOUNDCLIP

[Sound: Cheers]

MF: At The mouth of a flooded cave in Thailand's Chiang Mai Province emergency workers applied and pump their fists in the air. Two women jump up and down and embrace each other and for family members who've been keeping vigil, relief.

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VOICE 1: I don't know what I can do to pay back the rescuers. All I can do is say thank you so much to them.

VOICE 2: Today is the best day. I've been waiting for my son for so many days. I've only had a 50 percent chance of survival.

MF: And then this morning, new video. The boys are pretty good. Theya re covered in mylar blankets for warmth. They smile, even laugh, make gestures of thanks to the camera and receive some basic medical treatment. Officials on the ground say they are well enough to be moved but that won't happen today. Water is being diverted and pumped out of the cave system. Plans are being assessed and rehearsed. Ben Reymenants is a member of the rescue team.

SOUNDCLIP

These boys they can't swim they can't dive. So they are out weighing the options. Do we teach them to dive quickly, but it's a two and half kilometre swim. Or do we design some suit or mask to get them out? Or any other options. Or do we keep pumping until the cave goes dry and we can actually walk them out? But weather is not on our side. And they are expecting heavy thunderstorms in the next 48 hours, which might flood the entire cave system

MF: Being trapped in a cave is an experience Andrew Munoz knows all too well. The caver from B.C. had his own close call in a cave on Vancouver Island.

SOUNDCLIP

Andrew: Jase! BEEP-ing look at me okay? You made it alright. It's scary you made it okay. Let's chill out for a second okay?

Jason: Ya ya.

[sound of rushing water]

Andrew: I need you to crawl that way okay?

Jason: In a second in a second.

Andrew: I need you to start moving Jase. Need you to start moving okay?

Jason: My leg's caught.

Andrew: It's allright dude we're going to get out of here.

Jason: My left leg is caught.

Andrew: It's alright I'm going to move you're going to move. Just relax.

MF: sounds from a video Andrew Munoz shot in December 2015. You can also hear the voice of his friend Jason. He's an experienced caver, a paramedic and a volunteer with Alberta British Columbia cave rescue service. But when he set out that day with five friends he never imagined what lay in front of him. We've reached Andrew at his home in Duncan B.C. Andrew, hello.

ANDREW MUNOZ: Hi. Thanks For having me.

MF: That is some dramatic video. Can you take us back to that day? What cave were you exploring?

ANDREW MUNOZ: We were exploring a cave called Cascade Caves in the middle of Vancouver Island.

MF: And how many of you were there?

ANDREW MUNOZ: There are six of us in total. One of our friends turned around pretty early due to a pre-existing back injury. So there were five of us who went deep down into the cave that day.

MF: So what was the first sign that things were not going to be as anticipated?

ANDREW MUNOZ: All we had been there five weeks really. And the conditions were pretty similar. It's called Cascade because there's some large water falls so that's one of the main draws to going down there and seeing it. The problem with the way the flooding happens in most of these caves is it happens pretty incrementally. And I'm sure that's what happened to the guys in Thailand as it seemed fine at the time but it creeps up on you in small increments and then by the time it's too high to get out. It's too late to recognize it.

MF: The main problem was in a part of the key that I think is called Bastard's crawl?

ANDREW MUNOZ: Yes. That's correct. It's named Bastard's Crawl because it's quite a challenging piece of the. Caves several small creeks that has been flooring to the upper section of the cave, converge together there, merge and then pour off a four story waterfall.

MF: It's like a [unintelligible] point, eh?

ANDREW MUNOZ: Exactly. Think of an hourglass. The big part of the cave funnels into this narrow constriction and then everything opens up on the other side.

MF: So what happened at Bastard's Crawl when you started to have a problem - I think it was with your friend Jason, no?

ANDREW MUNOZ: Yes. So Jason had a very serious near drowning episode he. He was third in line to go through and he made it through that section okay. The water had come up as we were climbing out of the cave but there is still enough air to pass through, although not a lot. And he made it through okay, had a moment of indecision about whether he should go left and right on the other side but that, turned around to ask for directions and that's when disaster struck here. Whether it was his foot or his hip or whatever it was, the source low water sucked him into this narrow constriction and the water started to pour over him. He was basically stuck right up to his ears in that freezing water. You got to remember it is December. So it's quite quite cold for us.

MF: How was he managing to breathe?

ANDREW MUNOZ: The water was sort of coming over him in waves. He was acting like a cork essentially in this section where the caves for the water would fill up behind him and then wash over him and he was definitely struggling, for sure. He was fighting for his life.

MF: We have another section of the video you shot that day. Have a listen.

SOUNDCLIP

[Sound: Water]

Andrew: Just relax man we're going to do this together. Okay?

Jason: Yep, no worries. I'm BEEPing [inaudible]

Andrew: I know you are dude I know you are. I think we hit a bit more water. We might have a flood [inaudible] come down. Okay? We're going to do this together dude. You need good hands okay. You don't let this water take you! Ok?

Jason: Ok.

Andrew: And that's me so we're kind of tangled together. I'm going to start moving myself and you're going to start moving yourself okay? So my leg's going. [Inaudible]

Andrew: We got ourselves in a jam.

MF: What's going on here, Andrew?

ANDREW MUNOZ: So that is just after Jason had freed himself from his entrapment in the most narrow tightest part of the caves. He had popped out. We had some time to kind of assess the situation and take a bit of a breather if you. But I had gone in from the downstream end to help assist him and as he came through the force of the water kind of pinned both of us together. So we have got our legs and our hips trapped and tangled up in in the water pinned against some rocks and we were now stuck together.

MF: You emerge in one part of the cave, separated from the rest of your team.

ANDREW MUNOZ: That's right. So after Jason had his entrapped then we freed him helped him to come back downstream, and there's a small very small precarious ledge that we can perch on at the top of this four-storey waterfall. I had gone back through the Bastard's Crawl to meet the team on the other side and gather some equipment; a small stove, canister and then a Mylar blanket like what you see on that new video from Thailand. We used those two in conjunction to heat up water pour it inside Jason’s suit and then wrap them up in that blanket to help raise this core temperature. He’d been in the water for almost 15 minutes at that point and was stilting and progressed into the first stages of hypothermia.

MF: When you two are now and your team is gone, you know trying to find help or at least you hope they are, how remote are you?

ANDREW MUNOZ: I mean about as bad as it can get. Over the next 18 hours, Jason we're stuck on this 6 foot by six foot rock ledge. We couldn't go forward, we couldn't go- We obviously couldn't go down the waterfall it was too dangerous. So through that night the water came right up to the ceiling and occluded the entire passage. Search rescue and cave rescue people had made it to within probably 35 feet of our position but the force and the void of the water meant that we couldn't hear them. We couldn't see their lights and obviously this type of radio or any communication that can penetrate. So you're more remote than Mount Everest basically. I mean you might as well be on the moon at that point.

MF: How do you keep it together?

MF: eez. You know I can't I can't say you ever know what you are made of until you are tested it in a position like that. I mean luckily we were together and I think that - like the story in Thailand - the fact that all these boys are together as a team, it's really helpful I couldn't imagine what it would be like to be by yourself. But for me I knew that Jason had been through a way worse experience than I had and I just felt compelled that no matter what was going to happen and I was going to do my best to get him out of there.

MF: How did you get out eventually?

ANDREW MUNOZ: Well obviously we kept a very close eye on the water. It was kind of our whole world for that day. We checked it in short periods just like the boys in Thailand. We spent most of this time in the dark. We didn't know how long our headman batteries were going to last and we didn't waste them. So we checked the water probably 15 minutes and as we were on six thirty that next morning we noticed that the turbulence of the flow started to subside and then as we noticed the water, it was starting to draw up and a small air pocket emerging. And at that point I asked Jason if he felt like you wanted to give it another try and he absolutely did. So we by sort of scraping your right ear against the roof in the cave with your left ear in the water, there was maybe three and a half or four inches of air and we just managed to sneak through the Bastard's Crawl into the chamber on the other end.

MF: I think at that moment Jason couldn't really even lift his legs.

ANDREW MUNOZ: No. So the ledge that we're on was on a 45 degree angle sloping out towards the lip of this big waterfall. So we had to brace with our legs, jammed in between the two rock walls for over 18 hours. So Jason's legs after being that cold and then his muscles working that hard for an extended period of time he was in pretty bad shape. He actually had to start using his arms to lift his own legs into position on the footholds and rock ledges and then you'd hear him scream out in pain as he hauled his body up step by step, you know higher and higher as we as we worked our way back towards the surface.

MF: He just wasn't going to give up.

ANDREW MUNOZ: No I mean after we made it through the Bastard's Crawl it wasn't very long before we ran up to a large cache of equipment that search and rescue had brought down. It was very surreal because there is nobody there and just all these equipment bags. And what had transpired was that such search rescue team had spent around 12 hours just sitting there waiting. They obviously needed to go back out and get warm and they were about to go through a set of operational periods. So, we're about three hours behind them on the way out. When I found those equipment bags I said to Jason, here are the sleeping bags and hot soup and stoves and all I want to do is crawl in those bags and wait. But Jason said no, it is all the same to you, I want to keep moving. And I was committed to stick with him. So we ended up making it all way back to the entrance.

MF: You are still caving?

ANDREW MUNOZ: Yes. Absolutely.

MF: Why?

ANDREW MUNOZ: You know the fact that this happened is you know was pretty remarkable. This kind of stuff doesn't happen that often. The lure of adventure and exploration and discovery of this was just too strong. So we've all been back there since I've been on some pretty large trips since then and then hopefully go on some soon.

MF: Andrew thanks for speaking to us.

ANDREW MUNOZ: Absolutely no problems.

MF: Amazing story, really appreciate hearing it. Andrew Munoz, who's a caver, a paramedic and a volunteer with Alberta British Columbia cave rescue service trapped in a cave on Vancouver Island in 2015. You can see some of the video he shot on our website cbc.ca/thecurrent. Jill Heinerth is explorer in residence with the Royal Canadian Geographical Society what photographer and filmmaker and we've reached her in Ilulissat sat in Greenland. Hi Jill.

JILL HEINERTH: Hi how are you.

MF: I'm all right. Thanks. For the Thai boys who are stuck underground the big decision they're making is should they stay or should they go. What do you think?

JILL HEINERTH: Yes. Well you know I can't make any decision for the people that are on the ground there's a lot of factors that they have to take into consideration, like the weather or the potential for a worse flooding to make the chamber that they're living in smaller, versus the risk of teaching these kids to scuba dive and do one of the most difficult technical dives imaginable to get out.

MF: I mean if you were to go with that second option, how difficult would that be?

JILL HEINERTH: Well I mean cave diving is exponentially more dangerous and difficult beyond traditional open water diving. And this particular cave and the conditions that they have right now are extremely perilous, with no visibility from muddy water. They would be following a guideline as a tactile reference because they wouldn't be able to see. And these are people that would be completely new to swimming and scuba diving and they have to be able to manage any life support emergencies along the way. And this is you know it's potentially several km transit. It was four hours for the rescuers to get out yesterday through some spaces that were so small I believe they had to take their tanks off to. So it's a big deal.

MF: I mean look I'm sure a lot of people listening have had an experience scuba diving, maybe they go on a holiday and in perfect conditions they'll go down with them and leading them, you know, down maybe 10 metres or so. But that, if you're never done before and if you get water or when you're under water into your nose. It's terrifying. And then add onto that, the cave. Is it really wise to do that with the boys?

JILL HEINERTH: The difference between an open water dive and a cave dive is that if you go out in your mask, you can surface on an open water dive, but in a cave there is a ceiling here. So that's why it's so much more challenging. But you know if the cave is potentially going to flood even further and reduce the space that they're living in then that's the kind of difficult decisions they have to make, but it's an enormous responsibility for the rescuers as well to accompany someone through that difficult a dive. But the good news is that these kids seem to be extremely strong and a good team and psychological health and preparation is a big part of whatever lies ahead for them as well.

MF: They look pretty good, don't they? I mean from what we can tell.

JILL HEINERTH: Yes. It is truly remarkable.

MF: Will It help that they're are boys? In that sense that they are smaller and that sort of thing.

JILL HEINERTH: Ah well you know I mean children in general take to scuba diving really well. I mean they follow instructions and kids that are on a team are usually you know good attentive learners. So I mean that's certainly better for sure. The rescuers that are involved down there some of the finest cave divers in the world and they have successfully made rescues of this nature before. But this I believe has to be truly the most difficult moments.

MF: You know some of those expert divers, don't you? You know some of those divers. Can you tell us a bit about them?

JILL HEINERTH: Sure Rick Stanton John Volanthon, the two people at first reached the kids. I heard Rick's voice on the video and I thought 'oh that's fantastic' he's the best guy in the world to do this. He's a retired fireman and both of these guys you know went down there as volunteers, as we do and these sorts of situations. But they have the best skills and preparation in order to make this successful.

MF: So what are the challenges for them?

JILL HEINERTH: Well I mean it's a dangerous dive in and of itself. You know it's tiring, it's hard, there's certainly a lot of personal risk and I'm sure it weighs heavy on the heart to making these difficult decisions about what's best for the welfare and good outcome for the kids and their families as well. So you know it's very stressful. It's very difficult. But any time you're in an overcrowded environment and no visibility following a guideline and relying on your delicate life support equipment for the very next breath, then that's a big risk to take.

MF: You've been involved in some recoveries I think, recoveries of people who have lost their lives underground. What was that like?

JILL HEINERTH: Yes. I mean it's it's horrible. I mean certainly everybody always wishes for a rescue. But they're extremely rare. Most people that you know have a bad day out cave diving don't come back alive. So it's very difficult. I've lost a lot of friends to cave diving over the years and that's the worst part of what we do.

MF: What is it about you that you do it, that you put that risk into your life?

JILL HEINERTH: Yes well you know kids are really special environment. There's so much that we can learn about by diving inside of caves about climate change, about past civilizations, about fascinating biology. And for me it's also you know a whole spiritual experience of diving inside the veins of Mother Earth the life blood of our planet, fresh drinking water at times. And that's an incredible privilege to explore places that nobody's been before. That really is what fuels a lot of what I do.

MF: Jill thanks very much for speaking to us really appreciate it. Nice to meet you.

JILL HEINERTH: My pleasure.

MF: Jill Heinerth who is a world renowned cave diver and explorer in residence with the Royal Canadian Geographical Society and we reached her on a slightly tricky line, which you can maybe understand when you know that it is an Ilulissat in Greenland. The CBC News is next and then the heat wave roiling much of the country has turned deadly in Montreal and will head there next time. I am Mike Finnerty. And you're listening to the summer edition of The Current.

Montreal heat wave: People with health conditions, no air conditioning at most risk

Guests: David Kaiser

MF: Hello I'm Mike Finnerty. You're listening to the summer edition of The Current.

[Music: Theme]

MF: Still to come a podcast like no other. We'll hear from the creators of Sick Boy. It brings the reality of living with illness to life. But believe it or not it also makes you laugh. That's at half an hour. And in just a few minutes a deep dive into MBK the controversial Iranian group whose rally in Paris the other day featured former Prime Minister Stephen Harper as a guest speaker. First a killer heat.

SOUNDCLIP

Tonight extreme heat digs in. Authorities urge people to stay cool and hydrated. That's a tall order for people living on the street.

MF: Extreme heat. It's been the top story in Montreal since the Canada Day long weekend. Environment Canada in its latest heat warning says the warm and humid air mass over southern Quebec will persist through Thursday and today Humidex values will reach near 40. Conditions will grow even more uncomfortable on Thursday Humidex values reaching 43. Since Monday firefighters and police have been working their way through neighborhoods that are home to some of the city's more vulnerable populations. They're looking for people who may be at risk of extreme heat health complications. With more heat in the forecast, the city is now rolling out its emergency response efforts to keep residents safe. To tell us more about what that entails, we're joined by Dr. David Kaiser. He's a public health official with Montreal public health and he's in Montreal this morning. Dr. Kaiser hello.

DAVID KAISER: Good morning.

MF: When you say people have died from heat related causes what exactly does that mean?

DAVID KAISER: So I'll just specify that this is in constant development. And so this morning actually the total that we have is 11 deaths, unfortunately, from the last three days. And what that means is these are people who have died at home or in the community and where the doctor or associate with the paramedics has looked at the causes surrounding the death and determined that heat has likely played a role.

MF: What does that mean though, that heat has played a role?

DAVID KAISER: What it means is that it often in in the cases that we see these are people who have underlying medical problems. So they may have chronic diseases, diabetes, heart problems or mental health problems and they're living in places that have no air conditioning. So systematically all of the deaths that we have identified are in contact with air conditioning and where the measured temperature when the paramedics arrive is very high. So we have temperatures 33, 35, 36, above 40 degrees inside. And so in that context what we know about why heat kills people is that people with underlying medical problems are more vulnerable to accumulating heat. And so after a couple of days of being hot and living in a place that has no air conditioning the heat just overwhelms the body's capacity to adapt. And so those are the kind of deaths that we see as people who are not necessarily dying of what we think of as heat stroke, but that are dying of their underlying medical problems in a context where it's really hot in their apartments.

MF: And what can you do to get people with those sorts of underlying medical problems somewhere where they are not at risk from the heat?

DAVID KAISER: So you mentioned that we're in the emergency response phase of our plan. So the Heat Plan material has been running for 15 years and has a phased approach where there are things that are going on at all times. But since yesterday we're really in the highest level of intervention. And you mentioned, door to door activities by the fire service and also the police service that are doing door to door. And so in that context if people are identified that are in an apartment where there is no air conditioning and it's really hot or that that that seems like they're suffering from the heat, those people will be referred to the health network. At the same time in the in the health system, there are lists of vulnerable patients so a lot of the patients that are followed at home. Those lists are kept up to date and those people are called, visited and transported - if need be - to cooling shelters. And so since yesterday there have been cooling shelters opened in the health system so in what's called the [unintelligible] in the local health service center and also extended hours for libraries all kinds of municipal facilities, pools, waiting pools. And so for people who have limited mobility, who have underlying problems that make them more vulnerable to heat, those people can actually be transported a couple of times a day to cooling shelters to give them a break.

MF: Back in 2010 the heat was thought to be responsible for more than 100 deaths in the Montreal area. And your boss Dr. [unintelligible] said and I'm quoting here 'We learned our lesson from 2010'. What's different about the responses this time around?

DAVID KAISER: So after 2010 there was really a complete revision of the plan with a phased approach that includes a lot of preparation and a lot more coordination between all of the bodies that we mentioned; the fire service, the city, the police and the health system in order to make sure that when/if we need to go into an intervention phase we're not starting from from zero. We're starting from a situation where everybody already knows what they need to do. People are trained. They know how to recognize symptoms. They know who is at risk and it allows us to act much more quickly.

MF: Dr. Kaiser I'm curious to know whether things are really any worse in Montreal than they are in other cities affected by the heat - There's really bad heat in Toronto, in Ottawa, in London, Kingston and right across many parts of eastern Canada. Or is it that Montreal maybe in this case is just more more proactive because of its heat plant. Do you know how it compares with other cities?

DAVID KAISER: So most large cities in North America have a plan at this point. There were a number of kind of big events in the beginning of the year the 2000s that prompted cities to develop heat plans. What have been saying Montreal is, yes, we have a plan that's been around for a long time that it has been worked out a lot over the years and that runs really efficiently and really well. But also in terms of heat, thought, it may be surprising for people who live in Montreal and have experience the last few hot summers but we haven't actually had a period of sustained heat that corresponds to our criteria for heat wave, which is an average of 33 degrees for three days with the temperature not going below 20 at night since 2011. So it's actually been seven years since we've had such a sustained heat wave and where we expect that there will be severe impact on health and where we go really into our intervention phase. So I think that, yes, there is a level of activity and a history with the heat plan in Montreal that means that it runs well. But also we really are in an abnormally hot period and especially the fact that it's sustained for three four days.

MF: Dr. Kaiser thanks for your time.

DAVID KAISER: Well thank you very much for having me.

MF: Dr. David Kaiser he's a public health official with Montreal public health and he was in Montreal. And you're listening to the summer edition of The Current on CBC Radio One. I am Mike Finerty. Coming up Canada and MEK.

Stephen Harper criticized for speaking at 'Free Iran' event hosted by dissident group

Guests: Sharham Golestaneh, Mason Ghafghazi,

SOUNDCLIP

I am here today not to tell Iranians who their future governments should be. We are here to tell them that the future government of Iran must be the choice of a free people of Iran.

[Cheers and applause].

But that is not Iran today. Iran is ruled by a regime of cruel and tyrannical mullahs that represent the opposite of the best of human values. It is the regime that stands for everything that is wrong. It has sullied a great culture. It has sullied a great religion. The mullahs prisons continue to overflow with people jailed not for their crimes but for their consciences and the executioners work relentlessly. Women and girls are still treated as property not people. Religious minorities are still repressed and as much as the mullahs repress them the protests for change rise in the streets and they will keep rising until the regime is gone.

[Cheers and applause]

MF: That's former Prime Minister Stephen Harper at last Saturday at a free Iran rally in Paris. The event was organized by the Mojahedin-e Khalq or MEK. You also known as The People's Mojahedin in English. It's an exiled Iranian opposition group that, according to its website, "seeks to replace Iran's religious dictatorship with a secular pluralistic democratic government". But Canada's government classified MEK as a terrorist organization from 2005 to 2012 while Stephen Harper was still prime minister. And even now the group is controversial. So here's a bit of context. MEK was founded in 1965 by Islamic Marxist students opposed to the United States backed shah of Iran, and it played a role in the 1979 revolution.

SOUNDCLIP

[Crowds chanting]

NEWSCASTER: Thousands have lost their lives as they marched in [unintelligible] demanding an end to the 37 year reign of the Shah and the formation of new Islamic Republic.

MF: But its blend of Marxism and Islam did not sit well with the Khomeini regime and it was left out of power. In 1981 the group launched a bombing campaign, attacking the Islamic Party headquarters, killing Iran's president and the prime minister. That led to a crackdown on MEK and its leader Massoud Rajavi. He fled to France where he set up headquarters. The group was officially expelled by France for terrorist activities in 1986 but found refuge in Saddam Hussein's Iraq. Critics say, during that period MBK took on the characteristics of a cult built around Massoud Rajavi and his wife Maryam. Saddam Hussein trained and armed MEK and used them to launch mass attacks against Iran and the Kurds in the latter days of the Iran-Iraq war.

SOUNDCLIP

[Sound: Bombing].

NEWSCASTER: With Iran eventually war weary and on the brink of accepting the United Nations Peace Corps and Iraqi forces once again poured across the border in a last ditch land grab.

MF: The group was disarmed by U.S. forces following the 23 invasion of Iraq. But the group's leaders continued to live and operate in France and Iraq. Nowadays MEK mostly concentrates its efforts on political lobbying and glitzy events in Washington and Paris, events that attract major political figures. And we do know that Stephen Harper wasn't the only Canadian politician at the rally on Saturday. So was Conservative House Leader Candice Bergen and former Foreign Affairs Minister John Baird. Liberal MP Judy Sgro was also in attendance. We requested interviews with all of them and other MPs who have attended MBK events in the past. None of them was available. Well to help us get a fuller picture of MEK, we've got a couple of perspectives. Our first guest supports the goals of MEK. He Shahram Golestaneh is the president of the Iran Democratic Association. He's in Paris. Shahram Golestaneh hello.

SHAHRAM GOLESTANEH: Hi good morning.

MF: What's your relationship to MEK?

SHAHRAM GOLESTANEH: Basically we support the goals as you just mentioned of the MEK and the ten point plan of Mrs. Rajavi for a future of Iran based on the separation of religion and state, a secular non-nuclear Iran and the ballot box being the litmus test for the legitimacy of any future government.

MF: What you would like to see that government in Iran gone and replace absolutely and replaced by by MEK basically.

MF: Absolutely. Replaced by anyone who people would choose, as even Mr. Harper I guess bravely said, we are not here to say who the people will choose. I'm not too sure who the people will choose.

MF: And Maryam Rajavi, you wouldn't like to see her be president?

SHAHRAM GOLESTANEH: Of course I would like her to be because of knowing her. But whether people want that option or not it's up to them to decide. It's not up to me to tell them who to choose or not to choose. What I can say with absolute certainty is that the plan that she had put forward are the ideals that the Iranian people on the streets are chanting every day including the gender equality, having the option of choosing your own closing, ballot box being the Gitmo test of any future regime and separation of religion and state. I guess these are the ideals that the Iranian people are crying every day on the streets and they are fed up with the mullahs and 40 years of misery under the name of Islam. So these are the goals that they obviously can support. And I don't think that any Democrat in the West would not support any of those.

MF: Mr. Golestaneh that the event that took place over the weekend where Stephen Harper spoke, what was the purpose of that?

SHAHRAM GOLESTANEH: Is basically to raise the awareness to a higher level about the atrocities committed by the Iranian regime and coincidentally you may have heard that for the very same meeting a terrorist plot was uncovered by, I guess, the coordination between Belgium France and Germany and even the US intelligence services to bomb the event or to inflate some basic basically injuries or death.

MF: Who do you think was try to attack you?

SHAHRAM GOLESTANEH: Well obviously the Iranian regime and Iranian diplomat, Assadollah Assadi, has been arrested. And I read just in the news this morning that the Austrian authorities said that he would be - basically the diplomatic immunity will be taken off him because he was wanted by the European Union. So I don't know what it would be. But they had major intelligence information that the Iranian diplomat was behind that attack. So for us of course it's a deja vu. You know there is no surprise. We have seen the killing of Iranian dissident Kurds in Burdine. We have seen Townsends of terrorist assassinations of Iranians Anani Iranians across the globe.

MF: I was going to put to you that the concern about Stephen Harper's appearance at that MEK event is that MEK has had a long association with extremist militancy and has in fact been deemed a terrorist organization by several Western governments, including Canada's and the United States', and that our political officials current or former should really avoid any connection. How do you answer those concerns?

SHAHRAM GOLESTANEH: I can only tell you my perspective - I guess from MEK's perspective you have got to ask authorities in the MEK - but my perspective is that the the listing of MEK as a terrorist entity was done - and there are many documents which support that - as basically a continuation or start of appeasement policy of the US versus then elected Iranian president Khatemy in 1997. So I would argue that the listing of MEK as a terrorist entity was done at the behest of the Iranian regime and Tehran government. However the de-listing was not a political move. It was ordered by the courts across the globe. Every court that they have gone into, whether that was the court of the first instance of the European, Union whether it was the British court, whether it was the British High Court, whether it was the U.S. Circuit Court in Washington D.C. all these courts ruled in favor that they should not be listed as a terrorist entity. And all of those rulings were unanimous. I mean how can nine judges on the bench a high court in European Union, all of them wrong and not looking at the basically evidence.

MF: Mr. Golestaneh can you stand by. Stay with us because there are Iranians, many Iranians actually who have reservations about MEK as you know Westshore and Mason Ghafghazi is one of them. He's an assistant professor at the University of Toronto and he's with us live in Toronto. Mason Ghafghazi what's your view on MEK?

MASON GHAFGHAZI: Well, as it was described by your introduction, it is an Islamist Marxist cult. You don't have to go further than their logo, their name and their slogan to see these things. Their logo is a circle and machine gun. It's formed around a cult of personality around the Rajabi couple. Maryam Rajavi and Massoud Rajavi who's disappeared in 2003. No one knows if he's alive or dead. There has been no appearance. There are reports of ordered divorces and marriages including the Rajavi couples. So it has all the characteristics of a cult. Conservative former prime minister of Canada would be the last person who want to associate with this. MEK has participated in assassinations inside Iran. It's collaborated with Saddam Hussein in attacking Iran. It is accused of helping Saddam Hussein oppress the Iraqi people and this group has only become an unarmed group because the U.S. disarmed them in 2003.

MF: So what's going on here? Why is Stephen Harper going to speak to them? I guess possibly even more crucially why is suddenly the People's Mojahedin so much in favor in the White House and John Bolton is a big fan who is now extremely close to President Trump on foreign affairs matters. What's your analysis of that?

MASON GHAFGHAZI: Well this group has attracted high ranking politicians, Western politicians, especially American politicians. John McCain has been associated with them John Bolton of course as you mentioned. Newt Gingrich is another one. And Rudy Giuliani was also at this event. So they're very good at lobbying and attracting Western politicians. Mr. Harper is the highest ranking Canadian former politician as far as I know who has attended the rallies. But these things have been going on forever. It's gotten the notice in Canada because of Mr. Harper attended and because there's an uprising going on in Iran right now starting in December of an uprising in 80 towns which is, for the first time, demanding the overthrow of the regime in Iran.

MF: And Mr. Golestaneh, from your point of view, why is the White House now so interested in MEK?

SHAHRAM GOLESTANEH: I guess they are not interested only in the UK. They are equally fed up with the attitudes of the Ringham regime of not being in any - not only international norm or anything that they had promised including on every front that we can imagine whether it's human rights, whether it's the nuclear front, whether it's ballistic missile sites. And of course and MEK was the very first group who exposed the clandestine activities of the Iranian regime on the nuclear fronts. Basically they are credited with putting the world on notice of the dangers of Islamic extremism and fundamentalism, back in 2002.

MF: Right, but today, what can MEK do for Donald Trump today?

SHAHRAM GOLESTANEH: MEK is not there to do anything for Donald Trump. From what I understand MEK is to do anything with the Iranian people and try to I hope that other groups will do the same; try to deviate the suffering of the Iranian people under the mullahs. So their goal is to, of course, is to increase the uprising. Their goal is to get rid of the regime that I believe if you ask any Iranians whether they are the ones who are critical of MEK or the ones who are not critical, equally they hate the Iranian mullahs the same.

MF: So MRK is an instrument then to destabilize the Iranian regime and MEK is of course happy to do that.

SHAHRAM GOLESTANEH: Absolutely absolutely. Not an instrument in the eyes of anyone, but an instrument of change and actually a catalyst for change.

MF: Mason Ghafghazi how effective can MEK be at destabilizing the regime in Iran do you think?

MASON GHAFGHAZI: Not at all. So MEK, the people of Iran are fed up with the regime. I agree on that point. They are getting to a point of 'anyone but this regime', except the MEK. This is the most notorious political group in the Iranian society and their support- Iran has a police state so we don't have scientific polls but what's available through phone calls and social media puts them at half a percent in the Iranian society. These are the one group that can alienate all political stripes in Iran and push at least some of them to support the Iranian regime.

MF: But maybe they're fanatical enough to get things done.

MASON GHAFGHAZI: They're very organized. They're really well funded. The source of those funds are not known. It's suspected some of it comes from the money they got from Saddam Hussein. They're very well organized. I credit him with that. They've been very efficient. The point about exposing the nuclear efforts was correct. They've suffered a lot. They've done a lot. They've fought the best organized Iranian group.

MF: And yet you don't want their help in terms of destabilizing the Iranian regime.

MASON GHAFGHAZI: Look political groups aren't born overnight. These this group is its structure is not democratic. The Rajabi couple or Hasbi have been ruling this group for since 1981. You're hard pressed to find any dictator that has ruled for that long. The structure of the group, the accusations of human rights violations, torture inside the groups camps by people who have defected from the group are well documented. This is not a group who anyone believes would bring about a democratic future for the Iranian people.

MF: Mason Ghhafghazi thank you very much for your time. And here in Paris Sharhham Golestaneh thank you very much.

SHAHRAM GOLESTANEH: Thank you.

MF: Shharham Golestaneh he is president of the Iran Democratic Association. He was in Paris. Mason Ghafghazi is an associate professor here at the university system. Professor here at the University of Toronto and in our Toronto studio. And coming up in our next half hour speaking out about life with cystic fibrosis and having a laugh at the same time. You'll meet the guys behind Sick Boy, the podcast, in about 90 seconds I'm Mike Finnerty. This is the summer edition of The Current. [Music: Theme]

Sickboy podcast tackles chronic illness with laughter

Guests: Jeremie Saunders, Taylor MacGillivary, Brian Stever

MF: I'm Mike Finnerty near listening to the summer edition of The Current.

SOUNDCLIP

Welcome to sick boy a podcast we talk about what it's like to be sick. So let's talk about it.

[Music]

MF: That Jeremie Sanders launching his podcast sick boy in 2015. He has cystic fibrosis and he tackles his illness with a surprisingly light touch. In October he spoke with Anna Tremonti about the podcast he cohosts and a CBC TV documentary of the same name. And they started off with a taste of that podcast.

JEREMIE SAUNDERS: If there's anything that you can avoid in your life make it a barium enema because the very serious. It was awful. Not only was it the scariest moment of my life in CF, it was also my most embarrassing moment. I'm probably - what was I? I was probably about 14. And I remember coming in to do this barium enema and I've got the most gorgeous doctor.

VOICE: Oh no!

JEREMIE SAUNDERS: and she's like she must be like 25. I was like oh my god this is… This is amazing this is my doctor.

VOICE: You have arrived at a porno set.

JEREMIE SAUNDERS: Until she pulls out this like giant tube with a balloon attached to it.

VOICE: Oh my God!

JEREMIE SAUNDERS: And then she has to stick that thing at my butt.

VOICE: Oh!

JEREMIE SAUNDERS: And then they have to blow the balloon up so that the thing doesn't like fall out of my ass.

VOICE: Oh my God.

JEREMIE SAUNDERS: And then so it doesn't - it gets worse than that.

VOICE: They ask you to stand up and walk around.

JEREMIE SAUNDERS: She says: “All right. All right you're full. We're not done yet. So you need to go to the bathroom over there.

VOICE: [Laughs]

JEREMIE SAUNDERS: Empty out and come back. So she pulls the thing out. Barium looks like milk.

VOICE: Oh! God!

JEREMIE SAUNDERS: So I'm just spraying milk in front of this beautiful woman.

VOICE: Get graphic.

JEREMIE SAUNDERS: It was the most [laughs].

VOICE: Oh this is the best part.

JEREMIE SAUNDERS: Anyway, anyway…

AMT: Any way. Well, where do I start after that one?

JEREMIE SAUNDERS: I cannot believe that that just played on The Current [laughter].

AMT: Hey, you put it out there.

JEREMIE SAUNDERS: I did. Oh my gosh. Oh, yes.

AMT: Jeremie Saunders, okay I thought cystic fibrosis was about lungs. What does it have to do with your butt?

JEREMIE SAUNDERS: Yes. Well it is it is very much about the lungs but it's actually a multi organ affecting disease. So basically my body produces a much higher volume of mucus than the average person. And so that higher production of mucus is all throughout my body. The whole thing behind the barium enema story, why that happened, was well it's because I had this thing called intussusception, which is where my small intestine was rolling itself in on itself, kind of like you'd roll up a pair of socks. So I have to orally take enzymes and I would miss these pills when I was a kid I'd forget to take them or I'd be you know a bad kid and not take them because I wanted to be normal. And it would lead me to these really serious bowel obstructions and of course, this all kind of led into this very severe intussusception which is what led to the barium enema, in front of probably the first woman I ever fell in love with. I think it was love at first sight.

AMT: Well but this is what it means to be sick and have a chronic illness. Jeremy Saunders You are in our Toronto studio along with two friends who are your co-hosts of the podcast. So let's introduce Brian Stever and Taylor MacGillivray. Welcome.

GUEST: Thank you for having us.

AMT: You're all from Halifax. You're in Toronto in advance of a broadcast this Sunday of a documentary about you called Sickboy, just like the podcast it airs on CBC Television CBC Docs POV. So let's talk. Welcome all of you.

GUESTS: Thank you so much for having us. Thanks. Thank you very much.

AMT: Brian and Taylor did you ever think you'd laugh so much about sickness?

TAYLOR MACGILLIVRAY: Oh not until I met Jeremie and then as soon as I did I knew that I would, very much so, for a long time to come.

BRIAN STEVER: It's funny. The funny thing is that there is there is nothing funny about being sick, about getting a disease or having an illness. But there are a lot of funny circumstances that come from that. So like Jereie's barium enema story. That's something that we can all laugh about in hindsight and even though it was serious in the moment. That's where the humor is and that's what Jeremy has really been able to show, Taylor and I, especially through his podcast.

AMT: So I'd like just to get something straight. Jeremie has an illness, a lifelong illness, the two of you do know of. You're his friends and you're willing to talk about it all.

TAYLOR MACGILLIVRAY: Right.

BRIAN STEVER: Yes.

JEREMIE SAUNDERS: Actually these two are - You guys should be science experiments, really. You’re specimens. You're both extremely gorgeous and on top of that fit. AF, as what the young kids would say.

[Laughter]

AMT: You know I wondered if I should do this with the three of you because you have your own podcast so you can go rogue.

[Crosstalk]

BRIAN STEVER: Well that's a good question. Where do you fit into these two categories? So, are you somebody who identifies with having an illness or are you like Taylor and I, who have illness affect you in other ways in your life but maybe not personally with your own body?

AMT: Illness affect me in other ways of life not personally with my own body. So, sure, friends who get cancer, people who get ill. And how do you talk to people about it and how do you let them talk to you and what do you ask. So the kinds of things that you discuss on your podcast I can learn from, and I can go: “Wait a minute, this is good to know.”

JEREMIE SAUNDERS: See that's the thing right. Like when we first came out with this podcast, we would say to people: “Oh it's a podcast where we talk to people about what it's like to be sick” and the response would be: “Oh, so it's for sick people.” But no here's the thing is that every person everyone in the entire world is in some ways affected by illness or effected by death or effected by just hard circumstances. Those are the things that we just tend to talk about on the podcast. We all deal with those things in our own way. So this is the thing about Sickboy is that it's the message that we're trying to put out there and the conversations that we're trying to have. Therefore, they are for everyone to be having.

TAYLOR MACGILLIVRAY: We're trying to bridge the gap between people who are sick and people who are not.

AMT: So remind us what does cystic fibrosis do to a person?

JEREMIE SAUNDERS: So it affects a lot of different aspects of the body. But the big one the primary one is that it is a pretty serious lung disease. So my lungs are filled with this mucus, this fluid, and that provides this like breeding ground for bacteria which can lead to infection and that infection leads to fibrosis or scarring of the lungs. And over time, slowly but surely, the lungs begin to deteriorate. The majority of the people who pass with cystic fibrosis die from lung failure.

AMT: And there is no cure.

JEREMIE SAUNDERS: Not yet. No. There is no cure. It's a genetic disease. So this is something that I was born with but the advancement in how far we have gone in terms of treating cystic fibrosis has been astronomical. When I was born my parents were told that it would be very unlikely that I would live very much past my 20th birthday. And today sitting here with you I'm 29 years old. So you know and the average life expectancy today for people living with cystic fibrosis is something - they're really specific about it – it is something like 52.7 or something. And actually what's really cool is it's the highest average life expectancy in Canada than anywhere else.

AMT: So what is your lung capacity, Jeremie?

JEREMIE SAUNDERS: My lung capacity right now hovers in like the mid 60% range.

AMT: So what does that mean you can or cannot do?

JEREMIE SAUNDERS: Right now I feel like I can pretty much do everything although…

TAYLOR MACGILLIVRAY: Except smoke your corncob butt.

[Laughter]

TAYLOR MACGILLIVRAY: You cannot do that.

JEREMIE SAUNDERS: Yes I had to give that up. No I pretty much can do everything.

[Unintelligible crosstalk]

JEREMIE SAUNDERS: They sit outside on their little chairs on the balcony and I sit inside watching them. But I can I can pretty much do everything. I mean I get I get a little more winded. There's like, I have these moments where old I'll be doing something like I'll be taking my dog for a walk and I take him through this graveyard back in Halifax and there's this hill like that goes you know - and it's not a super steep hill but we get to the top of it. I sometimes will notice how winded I am. And if I'll be walking with my wife Bridey and our dog and I'm looking at my dog who's a French Mastiff who's just like panting so hard and I'm like: “I feel you buddy. We're in this together” and Bridey is you know she's just breathing very normally, breathing easy. But I've got this like pant coming on. The last 10 years or so I've been on this very steady decline in terms of lung function. And so it's you know every year it just becomes a little more apparent, a little more visceral, a little more noticeable.

AMT: Are you on a lot of medication?

JEREMIE SAUNDERS: Yes. I take about 40 pills a day. I do about two hours of treatment a day in terms of like keeping my lungs functioning. So I do a nebulizer when I wake up. Looks like a vaporizer but it's attached like very loud obnoxious generator. That's what I call a generator. Yes. So I do that in the morning and then I do it before I go to sleep just to keep this this whole machine running.

[Laughter]

AMT: So Brian and Taylor, you've known Jeremy for how long?

BRIAN STEVER: I've known Jeremy for a boat over 15 years now. Jeremy and I first met at competing in the sport of Sprint canoeing. Jeremy was actually a better athlete than I was when we were 12 years old and it's kind of embarrassing because he has a genetic chronic lung disease and we were competing in like a timed aerobics sport.

[Laughter]

BRIAN STEVER: But you know he was a year older than me. There's a big difference when you're 12 and 13 and you know…

BRIAN STEVER: There’s pictures of us when we were kids. You can see them in the documentary actually. I'm standing next to him on the podium and he's like a full foot and a half taller than me. So I blame it on that. The podium also was number one which is generally about a foot and a half taller than…

JEREMIE SAUNDER: Number two just say it

BRIAN STEVER: That's right. Yes. I've known Jeremy for over 15 years now.

AMT: What about you, Taylor?

TAYLOR MACGILLIVRAY: Jeremie and I, even though from the same city, around the same age, never knew each other back home. Serendipitously we go and take a yoga teacher training together and we get roomed up in Brazil together and meet on day one.

JEREMIE SAUNDERS: Seven years ago?

TAYLOR MACGILLIVRAY: Yes it was seven years ago, 2011.

AMT: Close friends ever since.

TAYLOR MACGILLIVRAY: Almost immediately best friends. He asked me to be one of his best man at his wedding, maybe just over 30 days after we met.

AMT: So did you always joke about his illness? Like when did you two come to the point where you could talk about this and joke about this with him?

TAYLOR MACGILLIVRAY: For me it was almost instantly because what happened was I arrived at this at this remote place where we're doing this training. And I arrived late at night. They this four by four through the jungle and then at one in the morning and I'm like: “Oh my god. I'm going to I'm going to walk in here and these guys are going to be sleeping my roommates.” Now Jeremie is up and he has to do his treatment before he goes to sleep. So he's there he's got his nebulizer, vaporizer, contraption that he's doing his medication before he goes to sleep. As soon as I walk into the room I go: “What's that? What are you doing? Are you...

JEREMIE SAUNDERS: I am smoking that good Brazilian stuff, man. Some rare Brazilian stuff.

[Laughter]

TAYLOR MACGILLIVRAY: And then he goes, he makes some joke and then goes: “No no no, this is what I do for my illness.” Like immediately we were talking about his illness and making jokes and it's our sense of humor that like connected us as friends really quickly. So almost immediately with Jeremie.

AMT: Well your podcast brings other people with illness, kids, young people who have degenerative illnesses who have had them since birth. Lots of different people and didn't give us an idea of the kinds of stories your guests tell you.

BRIAN STEVER: Oh man yeah. There's been so many at this point we've recorded over 100 different episodes and we explore physical illness and mental illness and we've explored sexuality as well. And within the first couple of weeks we recorded an episode of boat bipolar and that blew my mind. It opened up this entire world of mental illness that I absolutely had no idea about, because it's similar to Jeremie's cystic fibrosis in a way that it's almost an invisible illness, but it's this thing that we can't quite understand. So I'd definitely say that the mental illness side of things has been the most profound impact on me because I had absolutely no idea about it when we started this.

JEREMIE SAUNDERS: We talked to people living with these illnesses, whatever they may be, but we're not there to like understand what is the illness. That's not all we're interested in. We're there to understand what is the human experience you're going through in living with that illness. And that's like that's the thing that we're all that humor exists right. That's where it naturally kind of flowed out of people where they're telling us about the just the absurd experiences that they've had in living with diabetes, terminal cancer, bipolar or what have you.

AMT: How do you find your guests?

JEREMIE SAUNDERS: They find us it so you know when this whole thing started it was just the three of us we did one episode where it was me Brian and Taylor. After that we decided okay well let's make sure that wasn't a fluke. Let's see if we can recreate what we just did. So we reached out to a friend, Matthew Eniah who had brain cancer. We recorded with him and then somebody heard we were doing this so they said you should talk to my friend. And so we talked to someone who we didn't really know but we sort of knew. And then from there it just turned into this insane outpouring of people coming for being like “I would like to talk. I'd love to share my story.” And now we're sitting on a list of close to 500 people.

AMT: Where they are from? They're not all from Halifax.

JEREMIE SAUNDERS: All over the world.

TAYLOR MACGILLIVRAY: All over the world.

AMT: All over the world you have like in the film you've got somebody from India saying this is great.

JEREMIE SAUNDERS: Sam.

TAYLOR MACGILLIVRAY: Our biggest fan.

JEREMIE SAUNDERS: Her name Sam. She's actually a huge huge fan.

AMT: So Jeremie, you know you didn't always laugh about this. What was it like for you as a kid?

JEREMIE SAUNDERS: I was a bit of a angsty kind of a bit of a drama queen. I wasn't always this way. There was a lot of like why me. A lot of trying to hide the fact that I have this disease. I didn't want people to… I would never be caught taking my medication in front of anyone. You know I was very- I was ashamed and embarrassed about it. I didn't like the fact that it made me different. And so I tried to just cover it up as much as I could. I really didn't ever really want to talk about it. If it did come up in conversation, I would go there, but it would just kind of really reinforce all of my fears that I had about not growing old and how that was going to affect me in my future you know. Like not too long ago I came across this autobiography that I wrote and in it I go through this whole - it was a school project. I was like 16 and I go through this whole thing about you know who's going to want to marry the guy that's going to die partway through the marriage. You know it's just like this very sad very – I was very sad about it. But somewhere in there, there was like a shift. And I mean today looking back at that, I'm just astounded that that's the way I thought about it. I live with a very different perspective these days.

AMT: We actually have a clip from a scene in the documentary where your dad is reading part of that autobiographical essay. Let's listen to him.

SOUNDCLIP

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 CF and explaining what it is. But when I sit and think about things like what's the point of having kids [sobs] and who would want to marry someone who they know was not going to live. That's a tough. Those are the kinds of things that are hard to think about. And it makes me feel kind of useless.

JEREMIE SAUNDERS: [Sobs] Man. [Laughs]

[Crosstalk]

JEREMIE SAUNDERS: Sad dads. Like sad dads. That sucks. I hate sad dads.

[Laughter]

AMT: It's hard for you to hear your dad but your dad choking up there. He had not read that.

JEREMIE SAUNDERS: No, like you know there was a lot of- I love my parents so much. Like I honestly I'm so grateful I have I have such incredibly supportive and just like beautiful parents. They did everything that they possibly could to just like make sure that I lived the longest that I can live, the healthiest life I have. I could live, the best happiest life I could live. But the one thing that – and this was like, this is definitely a big part of the documentary - The one big thing was that we never really talked about my illness much as a family. Mostly because I feel like my parents didn't know how to bring it up, like how do you broach that subject.

AMT: Then they didn't tell you it had an expected lifespan.

JEREMIE SAUNDERS: That's right yeah. So I found out that cystic fibrosis is actually a fatal disease with a shortened life expectancy when I was 10. I found it on my own. My parents never told me and we never really had a conversation about it. And that's because they were told not to tell me. You know that's what the team the CF team the doctors were telling them their whole thing was like, he'll find out and then he'll come to you with questions and that's where you have that discussion. But that's not how it worked. That's not how it played out in my life. I found out by myself and I buried it and I buried it deep. And I'm not - I've never really spoken to a therapist about it. I'm not a psychologist obviously but I feel like taking that information and stuffing it so deep down it fostered this like really deep seated anger that I carried into my life young adult life. And I just pushed that so much on my parents. And it wasn't until I made that realization that I was I was carrying that weight of anger and really feeding it to them that I just realized how insanely silly that is and because it's not their fault. You know they are just flying by the seat of their pants they had no idea.

AMT: And in the film your mom and dad, what are their names?

JEREMIE SAUNDERS: Cobb and Maxine.

AMT: And your mom says, essentially: “We were processing this too. We couldn't tell him you're going to die at X age because we couldn't - we couldn't figure out what that meant for ourselves.”

JEREMIE SAUNDERS: They could barely wrap their own heads around. So how are they going to get some young child to wrap his head around it?

AMT: The 16 year old self who thought that no one would want to marry him actually you fell in love and you got married. Tell us about Bridey.

JEREMIE SAUNDERS: Yes. Oh Man. This is like emotional. Yes. I love my parents very much. Oh frick I'm sorry Maria. This is this is embarrassing. I'm crying.

AMT: You thought you were going to laugh.

JEREMIE SAUNDERS: And my wife is - she's incredible as well. Her name is Bridey. I love her very much and she's just been an incredible support in my life. She's known about my illness like right off the bat. We actually became really good friends in theater school here in Toronto, at Ryerson University and that's where we met. And we were good pals for the first year of our program and then we started to fall for one another. And it was like kind of the first time that I actually had a relationship or romantic relationship with someone who I didn't try to hide my disease from or like the knowledge of my disease from because she already knew. It was already out in the open and there was something really like liberating to that, although I did try to hide like I would. I still wouldn't you know take my pills in front of her and those kinds of things. But yes.

AMT: The three of you interview Bridey on the podcast. Let's listen to a bit of that.

SOUNDCLIP

JEREMIE SAUNDERS: What is it like when you start to fall in love with somebody who you know has a disease that limits their life expectancy?

BRIDEY: Well the thing is that I've lost people that I loved before. And so I feel like grief is the price of loving someone.

JEREMIE SAUNDERS: That's so perfect. That's the price you pay when you take on another…

TAYLOR MACGILLIVRAY: So don't ever love anyone.

BRIAN STEVER: Yes.

JEREMIE SAUNDERS: It's not worth it.

[Laughter]

AMT: Jeremie, what does it do to you to hear Bridey say that?

JEREMIE SAUNDERS: It's just real. It's the real honest truth. When we decided to do this together, to take that step in committing ourselves to one another, she was fully aware of what we were deciding to get into. And I made sure that both of us were very aware of what the future, statistically, very likely will hold. And she was just right there. She was just right there with me like there was no there was no hesitation. We both just knew that we were madly in love with each other and so that didn't matter. It didn't matter what was statistically to come. All that mattered was that in there and the moments that we had together.

AMT: So you've had these conversations about what it means for the two of you as a couple?

JEREMIE SAUNDERS: Yes. We had the understanding that that's what comes with it. But then again we don't we don't really talk about it too much.

AMT: So that podcast was really an eye opener in some ways for you, for all of you. Right? Somebody you know but it's a different way to hear her.

TAYLOR MACGILLIVRAY: Up until that point I had probably never talked to Brighty about it. To be a part of it and to be a facilitator for you guys for Jeremie and Brighty to have that conversation, as well as we also sat down and interviewed Cobb and Maxine, Jeremy's parents - which like sit in and be a part of that family discussion that quote unquote never happened was pretty ground-breaking to be therefore and to be a part of…

BRIAN STEVER: I think the interesting thing about all of this that's really remarkable is when you sit down with any one person for an hour and have a really real and vulnerable conversation, you feel like you know them so much better, but it builds a really strong connection. I find the biggest challenges is walking into that room once the recording is finished and thinking that I might not see these people again, especially the strangers that come into the studio and sit down with us and I want to have them come back and hang out and get to know them even better. Because we don't have those type of conversations very much in today's society.

AMT: You know there's more questions I want to ask but we have to take a short break. I'm speaking with the hosts of Sickboy the podcast Jeremie Saunders, Brian Stever, Taylor Macgillivray. Stay with us over the break. A reminder that the CBC television documentary called Sickboy airs Sunday on CBC Docs POV. So we'll continue this conversation in our next half hour as well as part of our project Adaptation. We're going to hear from Anote Tong, former president of the Pacific island nation of Kiribati, talking about how rising sea levels mean his country is disappearing into the ocean. He's got ideas for adaptation. Stay with us. I'm Anna Maria Tremonti. This is The Current.

[Music: Theme]

AMT: Hi I'm Anna Maria Tremonti and you're listening to The Current. Later in this half hour I'll be joined by a former president of the island nation of Kiribati. Its very existence is being threatened by rising seas and climate change. But before we go there we're picking up our conversation with three guests who host a podcast called Sickboy. It is Frank. It's funny. It's an ongoing discussion about what it's like to live with illness for host Jeremie Saunders that illness is cystic fibrosis and he hosts the podcast with his friends Brian Stever and Taylor MacGillivray. Halifax is their home base. They are with me in our Toronto studio. If you missed the first part of our conversation it's worth finding later on our website cbc.ca/thecurrent or go to the radio app. So now, Jeremie, Brian, Taylor some of your guests, some of your earlier guests have died.

[Crosstalk]

TAYLOR MACGILLIVARY: I think three of our guests passed away yes.

JEREMIE SAUNDERS: And two in like quick succession last winter. We kind of had this running joke because we had had a few interviews with people who were quite terminally sick and it had been probably like over a year since we had had these conversations with these really really terminally ill guests, and we kind of had this joke like oh Sickboy cures you. Yes. And then when we had to guess who passed away, it was like our world kind of came crashing down a little bit and we realized like we're not living in this bubble. Things got really real. It was an interesting perspective shift I think when we had a guest former guest pass away.

AMT: Well I'm wondering Brian and Taylor I mean your co-host has a fatal illness. How did it make you look at Jeremie differently?

BRIAN STEVER: It absolutely did for me. I remember the first guest that we had on the podcast who passed away was Andrew Henderson. We learned about it and I'll never forget the moment. We were in Vancouver recording some episodes and we got this news and I kind of broke down in tears. We all did. And the tears that I were crying were partly because Andrew was such a beautiful human being and died so graciously. But the other part was “oh my god like my best friend who is here with me right now is affected by some type of illness that statistically will probably take his life too.” And that was the first time that it felt real.

TAYLOR MACGILLIVARY: Yes. It's funny how sometimes like with the show and what we do can almost be an escape for people like Brian and I to put off how we feel about Jeremie. It's always us asking somebody else about how they feel about their illness or their loved one who is sick. Although I do kind of like meditate on death, my own death. I haven't had somebody in my life that's passed away that's like really close to me. So grief for me is a foreign concept. I have this kind of fear that it will break me. So it's kind of this this kind of shadow in the corner that I don't know how I react to.

BRIAN STEVER: The most interesting part is that Jeremie is here trying to prepare people. He talks about his is death. And we joke about it and we laugh about the concept of him dying sooner than anybody else and how this is a motivation for him to live his life and how he's personally okay with dying, but also at the same point even though he is prepared, I feel like it's almost impossible for him to prepare us because it's just a concept in our minds right now that his death is inevitable. But when it really happens it definitely scares me.

AMT: What do you think when you hear them talking like that, Jeremie?

JEREMIE: All I can think of is which one of you is going to take my force affects light saver [laughter]. Which one I really should actually give it to.

BRIAN STEVER: I want that shirt that you just got the other day.

[Crosstalk]

JEREMIE SAUNDERS: I think death is - death sucks you know. Death is not a fun thing to experience or to you know to be affected by, and I hear what you're saying Brian. I don't think you can prepare anybody for the weight of grief. But I do think that in what we're doing, and in me you know trying to set you guys up for this thing that is inevitably going to come, and whether it comes to me first or one of you guys first we have no control over that. What I do have control over is somehow just having a little bit of an effect in prepping you for that day so that when it happens it doesn't like break you, Taylor.

AMT: You're also helping them look at illness as a part of life. Brian your mom was diagnosed with cancer. How has your conversation gone with your mom since you've done the podcast? What have you learned about that? How have you been able to use that?

BRIAN STEVER: Yeah. Was it was a really interesting process dealing with that because my mom was first diagnosed because of this mass that they detected in her bladder. And she was she was trying to downplay it and saying like “well you know they don't know if it's cancer. They don't know what it is yet.” And eventually she told me that it was cancer. Now what I felt through the entire process is that she was trying to downplay the symptoms and the procedures that she was going through because she wanted to protect me. But I was also genuinely concerned about how she was dealing with it because we have sat down with so many guests who deal with the emotional repercussions of or look the emotional challenges of dealing with sickness so I was really concerned for her too. And I felt like I didn't know how to tell her that. And I wanted her to be comfortable opening up to me. But it was so hard to just bring it up with her and I kept saying like I don't know what to say I don't know how to bring it up. And I remember we were standing down by the Halifax waterfront and Taylor said just do it. All you have to do is to say that you want to talk to her and that is the hardest part in all of this because once you do that once you engage in that conversation, then it's out there in the open and the conversation will flow from that. And I can say now from my experience that once you do that and you get to the other side it is better.

AMT: How is your mom today?

BRIAN STEVER: She's doing really well. She was told that she's cancer free. The scary thing about cancer is that you don't know when it might come back. It could be days, weeks, years. But she's good right now.

AMT: Taylor, what we're talking about here with this podcast is you know not only the conversations you have in the podcast but the conversations that it then generates elsewhere. What kind of feedback are you getting?

TAYLOR MACGILLIVARY: I mean we get we've got a ton of feedback. People have reached out to us and gone. I listened to your episode and it made me realize a symptom of something that I have. I went to see my doctor and because of that I had a tumor removed that I didn't know was there. Like crazy stuff.

JEREMIE SAUNDERS: Sickboy is actually responsible for four separate circumcisions.

BRIAN STEVER: That's right. Yes.

JEREMIE SAUNDERS: That is not a joke. It's legitimately we've had four people go: “I've gotten circumcised since I've listened to sick boy. And this one particular episode which” I think is pretty darn.

BRIAN STEVER: It was a really good episode. So we had this episode about circumcision and about this condition that you know well a lot of guys have.

JEREMIE SAUNDERS: It is called phimosis.

BRIAN STEVER: Yes. Phimosis. And we had all - we these guys start writing and going: “Oh my God I've needed to be circumcised for so long.”

AMT: You're making such an impact on people it's interesting because in the end you're talking about illness and death but you're really talking about life.

JEREMIE SAUDERS: Yes.

BRIAN STEVER: that is it.

TAYLOR MACGILLIVARY: Big time.

JEREMIE SAUNDERS: It's the absurd the absurdity of humanity of just the absurdity of just living to be human. Like that's that that really is what this entire thing is all about.

AMT: And I you know I'm also struck by the fact, you don't have the luxury of sleepwalking through life. You seize every day, don't you Jeremie?

JEREMIE SAUNDERS: I do. But that's the other thing about the show is like I want to just force that onto everybody. You know because the thing is Anna Maria Toronto is going to die. Brian Stever is going to die; Taylor MacGillivary is going to die. We're all dying. We're all dying. Like. Yes I have a disease that statistically might take my life a little sooner than you but,

AMT: Maybe not.

JEREMIE SAUNDERS: Maybe not. So.

TAYLOR MACGILLIVARY: Carpe diem.

[Laughter]

BRIAN STEVER: I call this is a YOLO.

[Laughter]

AMT: We've got to end it there but thanks for coming in. And thanks for what you do. Thanks for making us think and really think and maybe talk a little differently.

GUESTS: Thanks for your conversation.

MF: Anna Maria speaking to Jeremie Saunders, Brian Stever,Taylor MacGillivray host of the podcast Sickboy. They live in Halifax. They've been with me in our Toronto studio in October. The CBC documentary Sickboy is available on CBC Doc POV website.

[Music]

MF: That's our program for today. Stay tuned to Radio One for Q. Writer Thea Lim is on the show. She explores time travel in a dystopian world wracked by pandemic in her critically acclaimed new novel "An Ocean of Minutes". She drew on her own experience growing up in Canada and Singapore to create a fresh take on themes of migration and the passage of time. And remember - you can always take The Current with you to go on the CBC Radio app. It lets you browse through past episodes of our show and start listening in just a few seconds. You can search for stories you missed or want to hear again, or listen LIVE to your local CBC station, right from your smartphone or tablet. Hear the day's top stories, even make your own playlist of your favourite stuff to listen to later. It's free from the App Store or Google Play. I'm Mike Finnerty . Thanks for listening to the summer edition of The Current.

[Music: Theme]

The Current Transcript for July 4, 2018

STORIES FROM THIS EPISODE

Prologue

Stuck 'like a cork' in the Bastard's Crawl, a Canadian caver's 18-hour ordeal to stay alive

Montreal heat wave: People with health conditions, no air conditioning at most risk

Stephen Harper criticized for speaking at 'Free Iran' event hosted by dissident group

Sickboy podcast tackles chronic illness with laughter

Wednesday July 4, 2018 Full Transcript

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