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Episode 14: Dying with dignity

About five years ago, former pilot Ray Perman was diagnosed with a rare form of terminal cancer. After being issued end-of-life-option medication, Ray was faced with a decision: Should he end his own life or let his cancer overcome him? Listen to Ray’s powerful and inspiring story this week on the Relate podcast.

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Transcript

TAMARA STANNERS: Picture this scene. You're lying on a bed at home, surrounded by close friends and the people that you love, your family. There are tears, but there's also some laughs. You've made peace with all of the things undone and unsaid in your life, and you're about to take your last breath. This moment will be painfully sad for those who love you and those you're leaving behind, but it's not unexpected. In fact, you've decided that this is the very moment to shuffle off this mortal coil, to say goodbye to the most important people in your life. That's what's happening on Relate.

I'm Tamara Stanners and this is Relate by Zendesk. Today's episode is very special and also very hard. It's about something we all have to deal with eventually and some of us sooner than others. Producer Andy Shepherd is here to explain.

ANDY SHEPPARD: I think this story, I guess you could say, it's about two key relationships. A daughter's relationship with her father and a father's relationship with his own mortality. Also, it's a part of a really important conversation that's going on about end of life care. When modern medicine says, "Look, there's nothing more we can do to save you." Then, what's next?

TAMARA STANNERS: Right. Do you let nature take its course? Or do you intervene?

ANDY SHEPPARD: Yeah, and obviously this is not a simple, philosophical, or ethical, or religious subject. It's difficult, right? This story sheds some light on one man's choice around his own death. Ray Perman has been diagnosed with a rare form of cancer. He's legally obtained end of life medication. Ray is now deciding if he's going to end his own life, or if he's going to let the cancer overcome him. The thing to know here, Ray is a former pilot and he's speaking to producer David Swanson here and he's recalling the ancient laws of the sea, which dictate that the captain will do everything in his power to not lose control of his vessel.

RAY PERMAN: The laws of the sea are extremely old, and the biggest, most remarkable law is the captain shall exercise every ounce of energy, every ounce of intelligence, every ounce of everything he has in his body, not to lose control of the vessel. To not lose control.

DAVID SWANSON: Hello. Is Ray here?

ANDREA PERMAN: He is. He's on his way over.

DAVID SWANSON: Wonderful.

ANDREA PERMAN: Come on in.

DAVID SWANSON: Hi, I'm David.

ANDREA PERMAN: Andrea, nice to meet you.

DAVID SWANSON: Andrea, nice to meet you. How are you, sir?

RAY PERMAN: I'm [inaudible 00:03:28] this morning. [inaudible 00:03:28] I had a rough day yesterday. Had really bad pain last night.

DAVID SWANSON: Yeah?

RAY PERMAN: I'm short of REM sleep, and I woke up this morning and I could barely open my eyes up. I just feel like I just ... If I put my head down right there, I swear I'd be dead asleep in 15 seconds. Right here ... Would you mind pushing my chair forward a little bit?

DAVID SWANSON: Sure.

RAY PERMAN: I'll get a little closer. Okay, one, two three, scoot. Test. Test one, two, three. Test, one, two, three. My name is Ray Perman, I have terminal cancer and I have been issued end of life option drugs, so that, should I choose to, I may end my life with dignity. Test, test, one, two, three. Test one, two, three.

DAVID SWANSON: On my walk up the driveway here I noticed something in the back of your car. Could you tell me what that is?

RAY PERMAN: Oh what's in my ... Oh, it's my wheelchair. Again, I have limited standing ability, limited walking ability. That has to do with the neuropathy. If I want to be at a party, I want to schmooze and be with my friends at the party too, so it's nice to have a wheelchair where I can enjoy the cocktail hour and move around. You don't want to just sit in the corner.

I just tell people, "You know, I'm having a good time. Don't worry about me. If I'm not answering the phone, it's because I'm either napping ... I love naps. Or I'm out having fun." Of course, I'm being a little bit loved to death, not to be eccentric, but a lot of people keep checking on me to the point, where I can't answer the calls. Please, you guys are killing me.

DAVID SWANSON: I know that you're quite an adventurer and an explorer and a risk taker, so...

RAY PERMAN: I was the blessed child of a Pan Am pilot. My father was ... he flew the famous Pan American Airways flying boats off of Treasure Island, off to the orient. I was a lucky child to be at his office on the floor, [inaudible 00:05:19] amazing amounts of data and maps and information and the whole ... everything you could possibly imagine about aircraft just raining down on me and discarded maps and diagrams, as well as navigational charts. Learning about all those things, so my intention was to have my first career as flying. I had been born in Germany and one of the best things you could do, as the Germans know, is to learn your first phase of flight in a glider, because that's where you could really recognize what's going on with the aircraft and with the air currents.

DAVID SWANSON: What's it actually like being on a glider up in the sky?

RAY PERMAN: It's delightful. First of all, most people up there for the first time think it's going to be silent. It's not silent, it's kinda like driving down the freeway with, maybe, your window slightly open. It's a little howling and whistling, but it's also so peaceful, there's no engine noise.

DAVID SWANSON: Is there a sense of fear or anxiety?

RAY PERMAN: Well, there's always a sense of fear and anxiety in everything we do, but the point is, you can control it. The laws of flying are taken from the laws of the sea. If the airplane is coming apart, you're experiencing exponential decay in the system you're operating. You don't quit. You don't quit. You don't quit. You don't quit. If it's clear you can't make port, then you do the next best thing. It's either controlled beaching, it's a controlled crash, but the goal is always to minimize loss. Minimize loss. That is it.

One of hardest things about cancer is the sense of disassembly of your own body. The first cancer that was discovered was sarcomatoid carcinoma. It is a rare form of cancer, it's incurable, it's a terminal form of cancer. It's fast, it's aggressive, it's mean. My current status is I'm basically stage 4 with the two types of cancers I described. I have a tumor in my abdomen that looks like a football on end ready for kicking, it's about five inches tall. It also is completely nested in the surrounding organs. I have 12 tumors in my lungs, I have about five tumors in my liver, a tumor in my tailbone. I have over 25 tumors, and I have seven tumors in my ribs, so I look like a Christmas Tree in a scanner.

That means that I'm dealing with all of that. My doctor called me and said finally, "There's nothing more that medicine can do for you." I knew exactly what to do, and that was to tell him, "Okay, let's start setting up for end of life."

ANDREA PERMAN: As a child, you're kind of learning how to take control of your own life, and then as an adult, you're always as close to fully as we can be in control of your life. It's hard to watch yourself get weaker, and less capable of things as you get older and older and have something like cancer.

DAVID SWANSON: Are you Ray's daughter ...

ANDREA PERMAN: Daughter, yeah.

DAVID SWANSON: I understand that you got married recently.

ANDREA PERMAN: Mm-hmm (affirmative).

DAVID SWANSON: Congratulations.

ANDREA PERMAN: Thank you.

DAVID SWANSON: Ray was telling me that he got to walk you down the aisle.

ANDREA PERMAN: Mm-hmm (affirmative).

RAY PERMAN: And it was a blessing.

ANDREA PERMAN: It was especially important because everyone knew the situation, and ...

RAY PERMAN: I got to dance with her. I had to teach the kids to dance the day before, that's so funny. It was just fun to be training people. My daughter and I had a good dance, and I recall after we danced, my daughter gave me the most delightful hug, it was outstanding, it was great.

ANDREA PERMAN: Uh-oh, he told this story. The morning of the wedding, he insisted on teaching us how to dance. I don't know, with anything he teaches, he really enjoys it and is so enthusiastic about it, and it's meaningful to him that people can gain the competency in whatever that activity is. He always says he knows a little about a lot of things, and I think he knows a lot about a lot of things, but part of that too is learning in any case he can, and then teaching in any situation he can. Yes, he definitely likes teaching.

RAY PERMAN: Sit over here, please ...

ANDREA PERMAN: Me? You want me over there? ...

RAY PERMAN: Yes you, that's you.

ANDREA PERMAN: Okay.

DAVID SWANSON: You're a musician.

RAY PERMAN: I would say I'm a percussionist, and I just enjoy any form of expressions or rhythm. You're gonna go four times, and then I join you, okay?

ANDREA PERMAN: Okay.

RAY PERMAN: I'm gonna play the interlude, and when you watch me, you watch my hand and go three, four, one. That's the last note, okay? Are you ready? Go ahead.

You know, when you know you're dying, nothing can hurt you. Nothing's worse than dying. You suddenly realize all the concerns that you're carrying are no longer relevant, so you've been unburdened. They're gone. You suddenly feel like it's just you, you're not carrying things around anymore. In other words, you always talk about baggage, baggage, baggage, but when you're dying, you get to throw all the baggage off your truck. Now, you're all by yourself, and just waving to your friends.

Suddenly you have all this extra bandwidth for considering other things. In terms of natural beauty, I'm a nature guy. Suddenly, I'm walking down the street and I see just things that ... just delightful beauty. Suddenly just the right flower, or the right look of sky can make me burst into tears. What used to happen is that every exchange you have with the natural world, and every exchange you have with your friends, begins to amp up times two, times three, four, five, times ten, the emotional value.

DAVID SWANSON: Sounds good.

RAY PERMAN: Okay, was that good?

DAVID SWANSON: Yep.

RAY PERMAN: Nice work, so we're done with that.

DAVID SWANSON: Where are we here?

RAY PERMAN: Basically, we're in my master bedroom, and this is where I would like to die. I'll be here with my closest family. The end of life option is it's just in a box, a separate box.

DAVID SWANSON: Would you be able to show that to me?

RAY PERMAN: Sure, sure. It's not too complex.

DAVID SWANSON: We're going to like a little closet here.

RAY PERMAN: Here is the palliative care package, then we can be here, and this is the drug package. Everything's clearly defined, all instructions, exactly what you do. What you see are basically three sets of drugs, and I'm gonna have to pull out my instructions, make sure I get this in proper sequence. Basically ...

DAVID SWANSON: It's a cocktail of three.

RAY PERMAN: You take it in series, because A, you want to relax yourself and B, you want to make sure you don't become nauseous and possibly vomit up the last drug during the phase. Then, you take the final barbiturates. Then, basically you lose consciousness in the five minutes, and some people die within 10 or 15 minutes, some people die within two or three hours. I have a larger body, I'm a bigger guy, I suspect I might take longer. Then I'll be picked up by the coroner, and that'll be it. I'll come back in a box completely cremated. Then, when they're ready, then my ashes will be delivered to the bay, in the same place we delivered my father's ashes. Those ashes will be delivered in the takeoff zone for the Boeing 314 from Pan American Airways, back off the tip of Treasure Island ...

DAVID SWANSON: Oh wow.

RAY PERMAN: I'll go out with the tide, as my father did and as all the airplanes did.

DAVID SWANSON: How often do you think about taking that pill?

RAY PERMAN: It's right in front of me. I'd say every other day, or so.

DAVID SWANSON: What do you think it will say about you, if anything, if you choose to not do this?

RAY PERMAN: I would imagine anyone would be tolerant of having a change of mind. None of us really know anything, until we're right there.

DAVID SWANSON: How I end this whole thing will be dictated upon my disease and my courage at that time. I may become fearful, and not want to do it.

RAY PERMAN: You can control it. The captain shall exercise every ounce of everything he has in his body, not to lose control of the vessel. I am the captain of this vessel. My body is my vessel, and I am its captain. Do not lose control. As long as I am competent, I get control over my vessel, it is my vessel.

ANDREA PERMAN: Death is ugly. Death is painful, death is not this flip of a switch that a lot of people think it is.

DAVID SWANSON: What will you miss the most about him?

ANDREA PERMAN: I think, just because we're so close, just all the lessons I've learned from him, and everything I've shared with him I'll miss ... and it's hard to answer beyond that.

DAVID SWANSON: You were talking about the idea of an ecstatic death. What is an ecstatic death?

RAY PERMAN: Well, it's a very happy death. I'm discovering that this last phase of life is not something to be feared. It's beautiful and I feel sorry for people who miss it. Up until only five years ago, maybe six years ago, I've been an [astonished believer 00:15:45], "Please, give me a quick death, I just want to drop dead, I don't want to [inaudible 00:15:48], I don't want to be a burden." That's the old mantra. In fact, it's like leaving before the show's over. It's a beautiful last act and no one should miss it, that's what I'm discovering now. Don't miss your last act, if you can.

This entire process has plunged me into the darkest part of the cave. As an explorer, it's my duty to see, and turn around, and holler back out to you and say, "It's not bad, don't fear it, don't fear it." In fact, if I can serve you all from this day forward, I want you to remember me saying, "Don't fear it, it's beautiful." Please, remember me.

DAVID SWANSON: I will remember you.

RAY PERMAN: Thanks. I don't want to go, that's the hard part.

TAMARA STANNERS: Special thanks to producers Dominic Girard, David Swanson, and sound designer Sean Cole for their beautiful work on that piece. Thanks to Andrea Perman for sharing her experiences during this very difficult time, and most importantly, to Ray Perman, for his bravery, and vulnerability, and honesty. And for allowing us into his home, and sharing his precious remaining time. Ray died February 4th, 2017 with family, and loved ones by his side.

That's it for Relate this time around. In one week, a feature interview with journalist, writer, and radio personality, Jon Ronson. He's gonna talk about his connection to the fringe of society. We're talking extremists, conspiracy theorists, psychopaths, new age soldiers, pornographers, and trolls. He'll also tease his fascinating new podcast, The Butterfly Effect. That's coming up next week on Relate. Subscribe for free, on Apple Podcasts, or wherever you listen, and we'll serve up that episode, and a bunch of great stories that we've got in the works.

Also, I wanted to tell you that Zendesk has a big conference coming up in New York City. Relate Live New York happens October 23rd through 25th with a raft of amazing speakers, like Jon Ronson, Martin Talks, and Daymond John, to help you take your customer service to the next level. For listeners of the podcast, you can sign up at relate.zendesk.com/live. Use the promo code "podcast" and you get a $200 discount on your conference registration. Again, that's relate.zendesk.com/live.

I'm Tamara Stanners, talk to you soon.

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