2.2 There's Love On The Other Side
Juliana Fedora
[00:00:00] Juliana: There's so much love and light on the other side. It's not fear, it's love on the other side, love is the biggest thing. I remember these angelic beings around me and they were so tender and that's what it is, is that there's love and tenderness on the other side.
[00:00:37] Debra: I am Debra Jarvis and you are listening to The Final Say, Conversations with People Facing Death. This is the podcast where you can get comfortable talking about death and learn some things about life from people who are facing death. In this episode, I'm talking to Juliana Fodera who has died 21 times.
[00:01:00] Debra: The first five of those times were the day she was born because she was born with Noonan Syndrome. Noonan Syndrome is a genetic disorder that can cause all different kinds of problems. So I'll let Juliana tell you a bit about that.
[00:01:16] Juliana: I was born in 1981, so it was well before all the advanced technology of being able to diagnose things in utero.
[00:01:24] Juliana: I had to be resuscitated five times the day I was born. My dad loves telling the story about how the, he was in the room when I was delivered and they flipped me upside down. It's a girl. We need to go take care of her. And off I went.
[00:01:39] Juliana: I had a lot of medical complications. I had septicemia. Both my lungs were collapsed, heart stuff, kidney stuff. Everything just kind of went, uh, awry.
[00:01:52] Juliana: With Noonans, it's such a game of roulette because you're not really sure how it's gonna impact the baby. Not every baby makes it. It impacted me really physically more than anything else, and the emotional, psychological impact came with the physical impact because of all the hospitalizations. As they grew older, some things sorted themselves out.
[00:02:14] Juliana: Some things my heart got more complicated, so I had to have my right kidney finally removed when I was 29. Um, 'cause it just crapped out.
[00:02:25] Juliana: It wasn't until college I got more active. I started, I was dancing The Five Rhythms, I was walking on campus was becoming, and I. notice one day I am walking up the steps to my class and I'm like, man, I'm tired. And I, I felt like I was gonna black out. And I'm like, all right, I'm just outta shape. So I go to class, nothing happens.
[00:02:41] Juliana: Come to find out I had four atrial septal defects. So they go in, I gotta have like emergency surgery. It was emergency cardiac surgery asking, okay, so what percentages? The cardiac surgeon, beautiful, beautiful man. He said to me, Juliana, I'm not gonna lie, it's 20% of you having a stroke, 50% of you having a heart attack. There's a 50% chance we're not gonna be able to resuscitate you.
[00:03:06] Juliana: Okay? I woke up with a very foul mouth. After the open heart surgery, I basically woke up, lifted up the sheet, and I said, “Where's my dick? I wanna see my dick!” And my mom is laughing. The, the, the nurse anesthetist is laughing. The student nurse looks terrified, and my father's laughing and trying to calm me down.
[00:03:33] Debra: Lots of people wake up with delirium after anesthesia. Not everyone wakes up with that exact question. However, I thought it was best to probably move on from that. So I asked Juliana, when she wakes up every day, does she think about death? And if so, what are her spiritual beliefs around death?
[00:03:55] Juliana: I'm a natural medium.
[00:03:57] Juliana: So I already communicate with spirit. It's like, [00:04:00] uh, the joke, the running gag in my family is that I got one foot in this world, one foot in the spirit world. I had a parallel experience where my physical body has been here, and after I had the open heart surgery, the next day I had a grand mal seizure. I completely flatlined, I coded and, um, felt them resuscitate me.
[00:04:20] Juliana: So while that was happening, I was on the other side and I, my uncle met me, I. And, uh, my dad's brother who was 44 when he died, uh, and he died of a heart attack, so we're in the hospital cafeteria and he's sitting there. His hair was braided and he was in a hospital gown and he met me with a glass of bourbon.
[00:04:38] Juliana: And I was like, is this it? And I'm in my hospital gown and I'm like, oh my God, you know? And we were on, man, lemme come through. I was like, I wanna come play. It was like basically my physical body was in the physical world and my spirit body was in the spiritual realm. And so I kind of like found the exit and I was like, all right, I'm gonna, I'm gonna escape somehow.
[00:04:57] Juliana: And as I was running, I felt this insane pressure and I was like, I can't. Catch my breath and, and I felt myself be breathed back into my body and back into my, and it's a very painful experience.
[00:05:09] Debra: Really.
[00:05:10] Juliana: Yeah. What happens is you feel your breath hitch like it is a, where I was in the spiritual realm, I could feel myself go back in,
[00:05:19] Debra: Were you bummed to come back into your body or were you happy to be back on this side?
[00:05:24] Juliana: I was like, I couldn't figure out what my mission was. And my uncle said to me, you gotta go back for your dad. You gotta go back for Peter. You gotta go back for my brother. Right. I was like, I will go back. Wow. So when I woke up, I was like, What am I still doing here?
[00:05:42] Debra: This was really intriguing to me. So I asked Juliana if she felt like her personality was intact.
[00:05:49] Juliana: Yeah, it was very much so when, when I experienced parallel existence, I. Parallel universe. My physical body was in the physical world. My spirit body was in the spirit world. So I was very well aware of my entire being. My personality was intact. I was intact. So it was like everything, there was nothing disoriented or disconnected.
[00:06:11] Juliana: And a guy who met me, he was really young and he is like, come on, we gotta go catch the next train and I was like, what are you talking about? And we were running toward the train. And only once I felt my breath hitch, I went out, I can't breathe. And he goes, come on. And I myself be resuscitated. Ah. I actually watched myself be resuscitated and my, it was like back in the body, out, back in the body, out, back in the body.
[00:06:37] Juliana: And I was like, I can't breathe. And in the spirit world, I couldn't breathe because my spirit was being breathed back in the body.
[00:06:42] Debra: That time it was a train. So what other modes of transportation have you experienced?
[00:06:48] Juliana: I had complications from a very complex urinary surgery and it was of no fault of anybody that did the surgery. Um, started to hemorrhage and I watched myself bleed out. My mom was staying in the room with me at the time. My dad was mom, I think I peed myself and she pulled back the sheet and it was just my life force. So she sat down and passed out. They came in to do my vitals, and in that moment I was 11 years old. I said to them, “Go take care of her. Don't worry about me.” Let them check her over because I couldn't deal with the idea of this doing her in. Right. And me taking, so at that point,
[00:07:30] Debra: did you cross over or started to leave?
[00:07:33] Juliana: I started to leave. I started to, I, I actually felt my spirit started to go. It was like kind of limbo, so weird, like I left, came back in and it was like a lift off.
[00:07:44] Juliana: It was more like a physical, I was like trying to hold and it was here. It was like slipping out and my body was like, okay, wait. Don't go yet.
[00:07:55] Debra: You walk around now in your daily life, do you ever think, [00:08:00] wow, I could drop dead any minute? I mean, do you feel like you're facing death every day?
[00:08:05] Juliana: Oh, I could go in my sleep, my heart could just kick out. Sure. You know, my kidney often think like, wow, what do I leave behind if I die? Brother and my dad are, mom passed away in 2018 cancer.
[00:08:20] Juliana: And that was really, that was not an easy thing. Um, the beauty in it though was that I was able to be a part of her care. So to be able to give care to her back after she did so much was such a beautiful, like as it was, and as challenging and as painful as it was to watch her. It was the idea of being able to give back to this woman that gave so much.
[00:08:51] Debra: Having crossed over several times and having it be kind of wonderful. Mm-hmm. Do you think it's made you more fearless in your life?
[00:09:01] Juliana: It's made me appreciate life and it's made me want to live the best quality of life possible. It's wanted me to stay as. Present in the moment as possible. It's one of these things where it's like, oh, okay, so I can keep myself safe.
[00:09:16] Juliana: Let's see what we can do. And I've made a life for myself and that's what it is. It's like I, I, I love life, like living a lot longer than all my doctors that ever anticipated and where wanna make the most out of my life. I don't wanna be on my deathbed going, you know, I really regret X, Y, and Z. Yeah. I want it to be like, I think it did pretty good.
[00:09:39] Juliana: That's where I wanna be at. I wanna be at the, and I
[00:09:41] Debra: Juliana had multiple surgeries and I know from talking to many patients and having surgery myself, that it's traumatic to have any kind of surgery. As my brother-in-law, the surgeon always says," There's no such thing as a small surgery." Because even if you're having surgery to save your life, your body remembers it as trauma.
[00:10:05] Juliana: In 2015, they finally, finally diagnosed me with medical PTSD. They were like, Juliana, you probably had this since you were a baby. And I'm like, well that makes sense because I'll taste anesthesia. I could hear like clinking of like medical instrument. I would like have these like memories. And I'm like, what is going on?
[00:10:22] Juliana: And then the weirdest thing would happen and this would happen in class in high school and class in college, and it still happens to this day where I will feel gaping holes in my body, like I'm open and my heart is one of the biggest spots. So it's
[00:10:42] Juliana: in working with the trauma therapist, because it's not that I don't trust the medical profession, it is just that I've had them say everything is fine, and then turn around and I'm sitting on an OR table. He's been, you know, working through a lot of. Being manhandled, being like multiple, multiple people just touching me and like futzing with me and having your dignity surrendered at a very early age is very, very profound.
[00:11:12] Juliana: I had a lot of abdominal pelvic surgeries, so I had people in places. I really didn't want people in places in, but because they had to fix what they were fixing, I had a. You know, kind of surrender to the process. Yeah. And trauma specialist I'm working with has been beautiful with me. She's really helped me to work through a lot of stuff.
[00:11:31] Juliana: And those of us that have been through extreme circumstances as children and are aging, you know, especially those of us with Noonan syndrome and our parents have watched us have to be intubated, extubated drains, tubes, all these surgeries, all these procedures, dressing changes, pain. Um, it's traumatizing for the parents.
[00:11:52] Juliana: It's traumatizing for the family. Yeah. You know, when I was born my brother was going to sibling classes and he couldn't wait to be a brother. [00:12:00] Like, it was like, I was like the best thing since sliced bread that was about to come give home. And your sister's very sick, but they're taking, the doctors are taking care of her and they actually brought my brother to the hospital to see me in the incubator.
[00:12:14] Juliana: And I just could imagine. How was scary that must've been for him.
[00:12:23] Juliana: It's, it's, I've always felt like, not a burden, but an impingement on everything because like, my, my health has disrupted so many things. Like it's disrupted vacations, it's disrupted, you know, it disrupted the family dynamic.
[00:12:46] Debra: I asked Juliana about her spiritual beliefs, what she was raised to believe and what she believes now.
[00:12:53] Juliana: I'm from an Italian Catholic background, so it wasn't until I made my confirmation that I started to just not agree what a lot of the church was talking about at that time. Uhhuh. Yeah. Yeah. So it was a lot of like you had to go to church.
[00:13:07] Juliana: God didn't hear your prayers. God didn't like bad behavior. God. And I'm like, I don't, it's not the God I believe in. Like what? Why has it gotta be all men? Like where are the women in this picture? Where's my, in the classes? And it was said, I have to be in the church. 'cause otherwise God won't hear your prayers.
[00:13:24] Juliana: I go and I ask the priest, 'cause this was the catechism teacher, this wasn't the priest that said that. And I said, I got a question all those times I'm praying from the hospital bed as a sick kid. God didn't hear it. He said, no, Juliana. He goes, we often go, the brothers often go for walks in the woods.
[00:13:39] Juliana: And that's how we communicate with God. And I'm like, okay. I said, just heads up, be careful what you're saying. It was like, oh, and it was like the difference between religion and spirituality is that religion is based on doctrine. Where spirituality is based on spirit
[00:14:00] Debra: What gives you the most joy in your day now?
[00:14:05] Juliana: Being gainfully employed, it's this day and age being somebody with a disability. The rate of. Disabilities who don't have a job is 80%. I'm actually Grants manager for a 5 0 1 C three nonprofit that provides competitive and inclusive employment to people with disabilities, and we are known as the prospector.
[00:14:28] Juliana: We're located right here in Ridgefield, and we have the. Prospector Theater and Prospector Popcorn, and we actively are working to just include people with disabilities in the workplace and show how important it is that, that it can work. Everybody deserves a chance at having a job and being a part of an active life.
[00:14:51] Juliana: He and I love my job because I'm educating and advocating for something I feel very passionate about. Uh, it's more about. Showing the world how capable people with disabilities are when given a chance, and they don't look at. Their disability, but they look at their ability and they look at actually what they can accomplish.
[00:15:12] Juliana: And one of the things that I found is that I kept just excelling, and I didn't expect this to happen, but I'm actually using my degree in community health. Like I'm applying some of the principles and some of the work I've done and like I just love what I'm doing and I, I love it because it's getting to.
[00:15:33] Juliana: Myself in a direction I didn't expect to go.
[00:15:38] Debra: I asked Juliana what her greatest joy was, and then I, I also asked her what her biggest fear was.
[00:15:47] Juliana: Biggest fear was being misunderstood people. Think like I come off as having an attitude,
[00:15:54] Debra: Really?
[00:15:54] Juliana: It's like sometimes it's like, oh, it's, I'm dealing with a little bit of pain and that's why I'm cranky.
[00:15:59] Juliana: Don't wanna [00:16:00] talk about the pain, and I'm cranky and I'm sorry that it's coming out. I ask what my pain level is today.
[00:16:11] Debra: Juliana's last question, man, that stopped me in my tracks. Have you ever considered my pain level? She was talking about her physical pain, but of course we experience all kinds of pain, emotional, mental, spiritual. So I found myself thinking, what if the next time I find myself with someone who I think is cranky or annoying?
[00:16:36] Debra: And instead of getting all judgy about them, I stopped and asked myself, Hmm, I wonder what your pain level is today? I think it would be just as helpful when I find myself being irritable or unforgiving to ask myself, what is my pain level today? Because softening toward ourselves makes it easier to soften to other people.
[00:17:13] Debra: Is there anything else you want to say?
[00:17:19] Juliana: There's so much love and light on the other side, and there are people on the other side who have crossed before you. There are spirit guides. There are, you know, there's a lot of energy, there's a lot of tenderness, and there are people who are crossing over at the same time as you in other places.
[00:17:38] Juliana: So it's not like, You're necessarily alone because not fear, it's love on the other side, like love is the biggest thing, and a death is just this shift of the actual substance of a person. So even though their physical isn't there anymore, mm-hmm. Their spirit is still very much alive. Be curious.
[00:18:03] Juliana: Oh, if I can say anything. Be curious because it's not what you think it's gonna be. It's not some scary, like, you know, a grim reaper coming after you and he open, be open, be curious. Um, that is not. To be feared. And the biggest fault in our society is that we're so afraid of like, that's gonna be it. And it's like, no, your spirit continues on.
[00:18:28] Juliana: You have other work to do.
[00:18:39] Debra: So here's my final say for today. Be curious. I think that's great advice. Not just for facing death, but facing life. I mean, you know, going into any situation, open and curious, that pretty much guarantees that if there are any gifts to be had, we will be ready to receive them. I mean, what if we can just be curious in every situation instead of afraid and contracted, you know?
[00:19:08] Debra: So we enter a situation with curiosity and wonder. And then I really do like that idea of wondering about someone's pain level when I'm about to judge them, and of course, checking in with myself about my own pain level.
[00:19:37] Debra: This has been The Final Say: Conversations with People Facing Death. Thanks for listening. This podcast is hosted, produced, and edited by me, Debra Jarvis, and thanks to Blue Dot Sessions, who provides music. Deep gratitude to Juliana Fodera for giving her time and her heart to this episode. [00:20:00] She works at Prospector Theater, which is a first run movie theater and online popcorn business.
[00:20:06] Debra: Their website is www.prospectortheater.org, and I'll put a link up in the transcripts of this episode. Please feel free to hop over to the final say podcast.com, and email me with feedback, you know, questions, ideas, stories. Are you, or do you know someone who's facing death and would like to be a guest? Let me know.
[00:20:30] Debra: Let me know what you thought of today's episode or how you're doing or what's up with you. And of course, I really appreciate you leaving a review wherever you get your podcast, because that helps a lot to get more people listening to these amazing stories. So thanks again for listening and I hope you find beauty and joy in your day today.
[00:20:57] Debra: And you know, I had my final say, but I'm going to let Juliana have the last word.
[00:21:05] Juliana: How am I going to go out? Like is it gonna be some stupid accident? Like I slip and fall in the shower and I'm like, God, I hope not. 'cause that would just be embarrassing after everything I've been through. And that's what does me in. There she is: slipped and fell in the shower, you know?
LINKS: www.prospectortheater.org
[00:00:00] David: When people make remarks about this, they, they use very dramatic words like this tragedy, but we don't use those dramatic words. The irony is, We laugh a lot and, and I endeavor to, and respectfully keep her laughing. Uh, whilst not denying the reality. Cuz the reality is there is present with you every day in her confusion, in her anxiety.
[00:00:37] David: That's a fact.
[00:00:44] Debra: Welcome to Season Two, Episode One of The Final Say: Conversations with People Facing Death.
[00:00:52] Debra: This is the podcast where you can get comfortable talking about death and learn some things about life from people who are facing death. I'm your host, Debra Jarvis, and today I'm talking with Cheryl House. At age 70, Cheryl was diagnosed with Alzheimer's disease.
[00:01:12] Debra: Now, you may remember that I usually have on only one guest at a time, but Cheryl felt more comfortable having her husband, David, and her daughter Wendy, in the conversation along with me. I also wanna give you a heads up that today we're talking about ending. But in the context of a terminal illness, Alzheimer's is a progressive disease from which there is no cure.
[00:01:44] Debra: And with Alzheimer's disease, medical aid and dying is not legal in any state, but there is another choice. VSED, V-S-E-D. And it stands for voluntarily stopping eating and drinking. And that is the choice that at some point Cheryl is going to make for herself before the worst of the disease takes effect.
[00:02:13] Debra: But before we talked about her death, I first asked Cheryl and David what their daily life is like.
[00:02:20] Cheryl: Every day is very different. Okay. It's very different. I mean, I. I can wake up in the morning, David brings me a cup of tea and then we come downstairs and we sit and we had just have a beautiful area. Yeah.
[00:02:36] Cheryl: And um, and then probably six out of. Nine times I just cry. Oh. So crying is my place of, it actually makes me feel better because I just believe in letting out the tears. Letting out the tears. Letting out the tears, because there is so little that I can still do. Oh. Um, I mean, I can't cook. I can't, I, I, I can't do anything.
[00:03:05] Cheryl: So, That then, you know, he is just the best person in the entire world. He's just so supportive and, and we have, we have laughs because David is what you are.
[00:03:20] David: I have a British wit. A British Witt is good. She's a fabulous audience. Yeah, she's a fabulous audience to that because some of that wit is pretty terrible.
[00:03:33] Cheryl: But I mean, he is right there and so like, like when I know that I should get outta bed, yeah. Then he will come and help me get dressed. I mean, I haven't been able to dress myself for a long time. So that he comes, he comes up and then, you know, he has to. Put everything on or off or whatever, and that then I feel, I just feel so sad.
[00:03:59] Cheryl: Mm-hmm. I [00:04:00] feel so freaking sad.
[00:04:04] David: We allow the time until we get over that really difficult, uh, period in the morning until we then open up and talk about the day, and then often at night, uh, if she's had a stimulating day or any sort of day. She can go to bed and then go dive deeply into a funk at the end of the day.
[00:04:26] David: So that often happens more often. Now,
[00:04:33] Debra: tell me about your spiritual beliefs. Cuz if I recall correctly, you used to play in a hand bell choir in church.
[00:04:39] Cheryl: Yep. At a um, at a Handbell choir in Minneapolis. So, yeah, the hand bells and, you know, I was on boards and I was on this and that and this, and then I realized that even if I'm sitting with three people having a conversation, I, I don't even a, after a few, few moments, I say, I have no idea what they're saying.
[00:05:05] Cheryl: Oh. And I don't even get what they're saying. Yeah. So as this has pro progressed, There's more and more and more that I cannot do. The executive functioning is just gone. Yeah.
[00:05:19] David: And what I see is a person who is endeavoring, uh, to figure things out. She's trying to. Straighten outta mind that won't straighten out.
[00:05:32] David: Mm-hmm. Uh, in, I wrote an essay recently where I said, it's like being in a fog, but the more you try to get outta the fog, you're getting deeper into the fog. And as a result of that, there is, um, uh, that confusion, uh, is, causes the pain and the sadness and the tears. Mm-hmm. And we just do our best. Um, Debra, to be honest too, our mantra is simply, Again, it sounds rather cliches, but we This is one day at a time.
[00:06:02] David: Yeah. This is this, we make decisions one day at a time. If we make plans for the future, um, we make the plan knowing. That when that time comes, it may be canceled. We just canceled a trip that we, we were gonna take to London, uh, and we canceled it because shows, uh, anxiety level, uh, for traveling is just going through the roof right now.
[00:06:27] David: So, uh, that's a fact. So we're in the airport and Cheryl has incredible anxiety of using the women's restroom. Because when she goes into the stall, she doesn't know whether she can get out. Cause she gets confused the last couple of times she's come out of the restroom. I've been waiting outside, uh, and just fell into my arm sobbing.
[00:06:49] David: Hmm. Right. You know, so who wants that anxiety? Uh, and in someone's life and our theology, and I think that's very important. Our theology is that people talk about, you know, God doesn't give you anything you can't handle. Uh, but we don't believe God gives you those things. What we believe this is life. And this is what we are challenged by.
[00:07:15] David: Uh, and, and we will, we will handle it.
[00:07:22] Debra: Cheryl, I'm curious, what gives you the most joy in your day?
[00:07:30] Cheryl: Painting.
[00:07:31] Debra: Painting. And, and, and how is it that gives you joy? Um, what is it about painting?
[00:07:36] Cheryl: Well, I've been painting for so long. Mm-hmm. They're all, they're all very, um, how would you describe them? That, that, that they're easels and then, and then I have different colors, and my favorite colors are black and yellow.
[00:07:56] David: Mm-hmm. Mm-hmm.
[00:07:57] Cheryl: So I will just, sometimes I'll be in the living room and [00:08:00] I'll dance a little bit and then I'll come over and then I have all my things set out, and then I just go,
[00:08:09] Cheryl: And that just, that just brings me and, and my family and my brother and my parents, they were very, very musical. So we do a lot of living room dancing. We do. Absolutely. Everybody should do more of that. Absolutely. Absolutely. But just as an example, when David. Dropped me off at Wendy's house the other day, or two days or something.
[00:08:35] Cheryl: I just sat down at, you know, their counter and I just, Lost it. Oh, I just lost it. I said, I, I don't know what to do. I don't know what to do. And she's so wonderful. But it's exhausting. It's exhausting to try to figure out what to do during the day. I mean, I can't, I can't. I just can't do anything. I just can't.
[00:08:59] Cheryl: Yeah. Example has been when we wanted to have children. Children, we wanted to have somebody over for dinner. And I have always been a big entertainer. Mm-hmm. And so I got out some silverware and put 'em on the, the dining room table, but then I had no idea where to put the fork or the knife or the spoon.
[00:09:27] Cheryl: Oh. And then what happens is that then I believe that, and then I'm crying and David comes upstairs of course. But you know what I know is. Is that I'm not dumb. I'm just, I mean, I'm a strong woman, but, but then what happens?
[00:09:49] David: Well, you, you, you accept that it's your brain. Yeah. That I say this is my brain.
[00:09:53] Cheryl: It's not my intellect, but I feel stupid when I can't do things. Yeah. Yeah. So that's a typical thing when I just don't know what to do and then I don't know what to do, and then I get.
[00:10:07] David: Yeah, the um, the irony of this situation, uh, Debra is that Cheryl is physically. In superb condition. In fact, you know, she's a 76 year old woman whose doctor tells her that she's never met anyone who is so physically healthy.
[00:10:26] David: Wow. Um, right. I mean, um, virtually, uh, she takes, uh, an antidepressant and she takes, um, uh, a, a pill to go to sleep at night, but no other pills, no other medications. Which is perfect health. And so, uh, the pain for her and for all of us is this emotional pain that she feels this. And as she talks about, uh, the sadness, this ongoing and deepening sadness that that grows.
[00:11:03] Debra: Cheryl watched her brother die of Alzheimer's, and she told me it was absolutely horrible to watch him struggle. Now, at the top of the episode, I talked about VSED voluntarily stopping eating and drinking, and this is what Cheryl has chosen to end her life so that she and her family and friends don't have to suffer through Alzheimer.
[00:11:29] Debra: And I asked her how and when she came to that decision.
[00:11:34] Cheryl: Just from the get go.
[00:11:35] Debra: Okay. From the very, very beginning. So, um, tell me what you do think happens when you die. I'm impressed that you're not afraid of death, and I wonder if that has to do with your religious beliefs or what are your feelings about death?
[00:11:49] Debra: Like, where do you go? What happens when you get outta your body?
[00:11:53] Cheryl: I just know that it's gonna be good. I mean, my parents have been long gone and I'll, you know, I, I just know [00:12:00] that there will be positivity and again, I have no fear of dying. So, because I'll, I'll be around all of my family and my best friends. And my parents were killed in the world's largest plane crash. It was in the Tennarife, 557 people died, and two 747's collided,
[00:12:22] David: 1977.
[00:12:22] Cheryl: It's one of those things that I just intuitively know that my parents will be there. I just know it. I just know it.
[00:12:34] Cheryl: There's really only been one person, um, that has. Well, I can't support you for VSED because only God decides who's going to die. And that's not my thing. I mean, I get to choose how I wanna die. And what was your response to that person? Was that a close friend or family member or just, it was a very close friend and um, And, and very close friend, but she just said, well, you just can't do this.
[00:13:07] Cheryl: This is you. You can't decide. God decides God will come down and help you die. No.
[00:13:17] Debra: Cheryl told me earlier that she knew it would be time to VSED when nothing mattered anymore, when she didn't care about anything. So I asked her, well, how will you know if your Alzheimer's has progressed enough and if it's progressed that much, will you be able to even express yourself?
[00:13:39] Cheryl: Wendy will know when I don't care about anything.
[00:13:43] Debra: Okay. And so that's your, that's your criteria.
[00:13:47] Cheryl: That's right. That's right. Yeah.
[00:13:49] David: So when nothing matters to her anymore, and this woman who is incredibly full of joy when she is not experiencing joy anymore, I support what she wants to do. I'm not looking forward to it. I'm dreading it, but it's what's right for her.
[00:14:07] Debra: Mm-hmm. I'm wondering how you, Wendy and David will respond if during V said suddenly Cheryl says, you know, I don't wanna do this. I really want drink. Now I'm, I'm just really, really thirsty. I mean, are you gonna encourage her to remember that she made this decision? Like, you know, maybe she forgets. How will you deal with that?
[00:14:33] David: One to Wendy, because that's her expertise. Uh, Debra. Yeah. Okay.
[00:14:38] Debra: Wendy is a death doula or a death midwife, and in the same way that a birth midwife helps a baby be born, come into the world, a death doula helps someone get out. So her role is to create peace of mind for both the person who's dying and their family.
[00:14:58] Debra: I'll put a link to Wendy's website, uh, in the transcript on the show notes on The Final Say podcast website .
[00:15:05] Wendy: It's helpful. I had, um, uh, my first v said client last June could experience what that those situations are like and how to, um, support. Anyone who has an urge of of thirst, there's a lot of different tools and techniques with maybe spraying one small spritz after they take medication or with a cold spoon.
[00:15:29] Wendy: So there's definitely like physical things. And then we've shot videos before of mom's kind of VSED statement of why she wants to VSED but we'll shoot a smaller little videos and mom says, Yeah, but I, I would really like a, a drink and I, this is uncomfortable. And, and if she starts, you know, like that, that's one thing we're like, all right, let's get you comfortable.
[00:15:50] Wendy: It's another thing if it's day four or five and she starts forgetting why she wanted to do this. So at that point we'll have, um, videos that she's speaking to [00:16:00] herself, reminding her of why she chose to VSED um, And we'll also say, you know, mom, if, if I do give you that drink, then um, you are delaying death and that, and this is something that you have wanted to do.
[00:16:14] Wendy: But ultimately, if Mom says, Nope, I know all of it. I get it. I just decided this isn't what I wanna do, then we need to respect that.
[00:16:23] David: I, I just want to, uh, bookend what Wendy said and bring completion to that last thought. Cheryl has never wavered in her decision to be said many times. I have checked with her.
[00:16:37] David: Darling, do you still want to? Are you sure you want to do this? And there's been absolutely. So, uh, that, uh, confirmation or that certainty, uh, has always remained. She's never had a moment's hesitation about it. That doesn't mean, uh, Debra, what you said couldn't happen, of course, but I think, uh, Wendy was quite articulate in sharing the process and what happened.
[00:17:00] Debra: What is it like for you to see Cheryl every morning and know that you are gonna help her get off the planet?
[00:17:09] David: Truly one has to manage your emotions so much. Hmm. Uh, and, uh, I know what's gonna happen, but I choose not to dwell in that place simply because it doesn't serve me and it doesn't serve Cheryl. It's inevitable.
[00:17:29] David: Uh, we're dealing with a terminal disease. So we have made a pact that we truly will do this one day at a time. We're both people who I think have good spirits, strong spirits mm-hmm. Uh, that, uh, that help us transcend this. And then so, You know, I, I endeavor to, uh, man, self-manage in the best way that I can.
[00:17:54] David: Yeah, yeah. I, I, we just can't go too far. It will happen when it happens.
[00:18:02] David: Uh, now I am in a little different position in that my first wife died of ovarian cancer. So I, I was a caregiver to her, uh, not like I am to Cheryl, but, um, at, at the end, uh, the quality of her life was so non-existent that one could only wish for her release. So I've had that in my background and like all experiences that helps to a certain degree with, with Cheryl. Um, I experience her emotional pain every day, you know, in a consistent way. And I would not want her to be in pain, whether it's that terminal illness of a cancer or whether it's the emotional, uh, pain that she goes through. Uh, no.
[00:19:08] Debra: Put yourself in the place of listeners to this podcast, and they're listening to someone who's got Alzheimer's and is going to VSED what would you want them to know?
[00:19:20] Cheryl: Ask for help. Don't be afraid to cry because crying is a beautiful thing to. And it's okay to simply say, this is how I wanna die. I get to choose. I get to choose.
[00:19:39] Wendy: You have to be thoughtful about the details around the actual VSED process. It's not something that. You want to decide? Yes, I, I'd like to VSED and I wanna go next week. And that's the first time your healthcare director, your internist or whomever, um, knows about this and thinking about the steps that it takes to make sure that the process goes as smoothly as possible.[00:20:00]
[00:20:10] Debra: Do you have any plans to, or maybe you've already done this, have any kind of gathering of friends and family to say goodbye? I love you, I forgive you.
[00:20:20] Cheryl: Oh, absolutely. Yeah. No. So my bo, both of my daughters did a, Wendy, why don't you, why don't you tell them what, what you put together last fall?
[00:20:31] Wendy: But mom really wanted to be able to, one, have an opportunity to. Um, look all her dear friends in the eyes and tell them how grateful she was for being a part of her, her story and her life. And she also wanted to be able to have these friends meet. And it was be, it was lovely. It was absolutely beautiful. And um, mom has this quote, so everybody walked away with this really pretty letter press quote that a friend of mine made for, for everyone that said, and this is mom's one of her mantras, it's Maya Angelo. There is no greater agony than bearing an untold story inside you.
[00:21:18] Wendy: Yes. That was sort of like the general feel for the gathering. And it was also a time where mom, um, thing that mom is able to do that brings her joy is, um, paint. So everyone at the party. Could leave with a canvas, um, of original work from mom. So that was quite beautiful.
[00:21:47] Debra: So here's my final say for today. I completely agree with Maya Angelo that there's no greater agony than bearing an untold story inside you, and I'm so glad that Cheryl and David and Wendy got to share their stories with us today. Stories are important, the stories that we tell ourselves and the stories that we tell one another.
[00:22:20] Debra: And there is one final story that I want to leave you with today. One thing that Cheryl and I have in common is that we both have done the 500 mile pilgrimage of the Camino de Santiago, and this is David telling a story about Cheryl talking about it.
[00:22:44] David: After she came back from the Camino, uh, she was asked to talk about her experience at the service that we, we were at, right?
[00:22:52] David: So shows up there, uh, and she's, and she's talking about it, and then she talks about, as you would know, getting to the church, St. James at the end. And she's looks up in and she's telling the, the, the people. And there was Jesus Christ. Um, um. And she's doing this. Um, and then someone says, crucified and Cheryl says "Yes!"
[00:23:15] David: She said, "All I could think of was circumcised."
[00:23:20] Debra: Well, he was Jewish. So, you know,
[00:23:29] Debra: Thanks for listening to The Final Say, , and thank you again to Cheryl Hauser, David McNally and Wendy Brown for sharing their stories. Thanks also to Blue Dot Sessions music, as always, you guys are awesome. If you would like more information about VSED Medical Aid in Dying or Dementia Care, I strongly suggest that you go over to Compassion and [00:24:00] Choices.org.
[00:24:01] Debra: They're a wonderful organization that have tons of resources and information and can help guide you through all of that. Also, if you like this podcast or you don't like this podcast, please let me know. Feel free to go to the website, the final say podcast.com, and leave a comment or go to Apple or Spotify or wherever you get your podcast and write a review.
[00:24:30] Debra: And feel free to subscribe! Thanks again for listening.
2.1 I Get To Choose!
Cheryl Hauser
8. I'm Lucky!
Don Mallett
[00:00:00] Don: I've made it to old age! I'm lucky. I can remember being at Normandy. It's just one freaking battlefield cemetery after another. It's there are thousands. Yeah. Never made it to old age.
[00:00:28] Debra: I'm Debra Jarvis, and you are listening to The Final Say, conversations with People Facing Death. This is the podcast where you can get comfortable talking about death and learn some things about life from people who are dying. In this episode, I'm talking with Don Mallet, who was diagnosed with pancreatic cancer about a year before this interview.
[00:00:52] Debra: I knew Don and his wife Brenda, AKA Magoo, because we attend the same church. They were always super friendly, but I didn't know them well. And by that I mean that I'd never broken bread with them. You know, I never had a meal.
[00:01:07] Debra: Did you ever meet people you know you could be really good friends with, but you know, somehow you don't make the time, and so it just never happens.
[00:01:15] Debra: Don and Brenda were those kind of people, but in any case, they welcomed me to their home on a beautiful summer day, and Brenda was out working in their garden as I drove up.
[00:01:27] Brenda: I was looking out to see how cold it is.
[00:01:30] Debra: Hey, how are you?
[00:01:32] Brenda: I'm okay. I got the start of a cold.
[00:01:35] Debra: Oh, boo.
[00:01:36] Brenda: So I'm, you know, putting Zicam in and all kinds of things.
[00:01:40] Debra: Yeah.
[00:01:40] Brenda: Glad you could come. We're in the midst of this. Finishing up lots of things though.
[00:01:44] Debra: Look at, I just have to gaze upon your garden. It's so gorgeous.
[00:01:48] Brenda: Well, thank you.
[00:01:49] Debra: It's just a feast for the eyes.
[00:01:51] Brenda: Yeah, well the crocosmia is just blooming, which is just one of the best.
[00:01:56] Debra: Well, that's exciting.
[00:01:57] Brenda: Yeah, it is.
[00:01:59] Debra: Look at your geraniums. Wow. Wow, wow.
[00:02:02] Don: Hey, how are you?
[00:02:03] Debra: Hi.
[00:02:04] Don: Good to see you.
[00:02:05] Debra: Oh, good to see you.
[00:02:06] Don: I will. You have some coffee? I'll make some more. Not that makes any difference. Cause I'm gonna have some anyway.
[00:02:11] Debra: Oh, okay. If you're gonna have some.
[00:02:12] Don: I ran out a coffee, so I'll be right back.
[00:02:14] Debra: I never turned down a cup of coffee in my neighborhood where I grew up. If you didn't offer coffee, it was because you didn't like the person visiting and refusing a cup coffee. That was like a slap in the. So I just never turned one down.
[00:02:32] Debra: Don had pancreatic cancer in October. He wasn't feeling great in November. He lost 20 pounds.
[00:02:40] Don: Well, I went in to see my doctor. I get a exam every year.
[00:02:44] Don: Everything's been fine. He said, let's do a blood test. So they did a blood tests, and this would've been early December. He says, you're anemic. This makes no sense at all. So I did a CAT scan. Now guess. They showed a mass. That's all I could see. Wow. So then they went to the next level CAT scan with contrast.
[00:03:03] Don: Said the markers are, I knew it was pancreatic cancer, so this would've been probably early December. Okay. And then they immediately did, um, a biopsy, found a mass on the pancreas, and the mouse had found its way into the posterior wall of the. And the spleen was evidently a mess. Wow. At the time. And I think they were surprised.
[00:03:29] Don: They said, you know, this is not my first journey with pancreatic cancer. I understand it. One of my closest friends when I was served with him in the Navy overseas, um, Dear friend, um, died of pancreatic cancer. Oh, and I did eulogy was in Chicago. So I am somewhat familiar with this and I think I understand the journey, right?
[00:03:50] Don: I said, let's be a aggressive on this.[00:04:00]
[00:04:01] Debra: So tell me, what was your first thought when they said, there's a mass, it's pancreatic. Especially in light of the fact that you've had experience with somebody dying of pancreatic cancer. So what was your first thought?
[00:04:17] Don: Take that estate plan that I was gonna work on since 2002 and get your ass in gear and get it done.
[00:04:25] Don: And we have done that. Reprioritize everything. , try as best you can to bring the family along. And uh, that has been the one part of this journey that has been difficult for me. We're getting there. That's been a journey, but it was more reprioritizing.
[00:04:46] Debra: So I wanted just back up. When you say bring them along, it, what's been hard for them? Is it that they're in denial about it or--
[00:04:57] Don: I think, and this is partially my fault, when I use the word pancreatic cancer, they immediately Google it and they see the statistics and they see, you know, this is, this is, and especially mine, and it's over a pound. Um, so they, um, , they were frightened losing their dad.
[00:05:24] Debra: Could they, could they actually say that to you, Don? Like, we're afraid you're gonna die?
[00:05:30] Don: They've never said that. First thing I did was stupid. I called my son in, he's his office in New York City. They live in Connecticut. And uh, I called him out of a meeting that he was involved with. He was, and I told him that there has been a diagnosis of pancreatic cancer.
[00:05:50] Don: Well, he broke down right there on the phone and here I've gotta talk him off the ledge. He's got a meeting. He's got, so we we, that was a false start on my part. I'm very careful in talking to them to basically be clear that I am being aggressive. I am absolutely committed, but I think I know how this thing's going to end my job and this. Is basically to get as much quality time as I can to interact with all of you. You know, that kind of a thing. It, the journey with the boys, uh, has been. A difficult one for me.
[00:06:27] Debra: Yeah. This is one of the things that makes communication with family really difficult when you have serious health issues because you really care about them and their feelings and you don't wanna upset them.
[00:06:43] Debra: And this is why people love talking to chaplains and social workers, because you don't have to protect us. You can be honest and talk about how you're feeling., What's happening with your health? So this is always kind of tricky.
[00:07:01] Debra: So tell me about the, the high points of your life. What's given you the greatest joy?
[00:07:09] Don: Magoo? My sons, there are a lot of high points, uh, and I can't prioritize them. I would say, you know, the, the, my family? Mm-hmm. , birth of my kids, that kind of thing. My Navy career, my legal career. Some people would say, how the hell can you be a divorce attorney for 50 years and find, but, uh, I think I helped a lot of people through a very difficult time.
[00:07:38] Don: I think I understood the dynamics of it beyond just the, the, the legal aspects of it, and then the involvement, the engagement that I've had over the years. Whether it's with a lot different not-for-profits, uh, my church, which is very important to me, you know, and just the relationships and just the [00:08:00] daily interaction with people.
[00:08:02] Don: I enjoy. There's a lot of serendipities in my life.
[00:08:10] Don: I'm colorblind red and green. So your question is, so how the hell could you be an officer in the United States Navy if you were colorblind? Well, well there's a will. There's a way 'cause I had a draft board in Indiana. That's where I'm from. And the draft board was on my case. You, you can finish law school.
[00:08:29] Don: You have one opportunity. One opportunity to take the bar and, uh, that's it. Well, I took that opportunity and pased the bar and they said, but this time your physical will be at Sandpoint Naval Air Station, which was still operational. So at the designated time, I go out to the dispensary and I showed up there at four o'clock, 1600 hours for you people then, and there was a corpsman there, and he said, "Sir, we knock off at 1615."
[00:09:00] Don: I said, "Well, I was supposed to be here at 1600 hours." And he said, "well, I'm supposed to give you eye test." And I said, "I'm colorblind." And he said, "sir, that's my call. That's not your call." Well, I took care of the fraudulent enlistment because I told 'em. I made a full disclosure, and they give you the Farnsworth lantern test, which is, it's a beam of light. It, it's whiteand red.
[00:09:27] Don: I said, "Okay, but I'm telling you I've been tested: Books, the Farnsworth lantern test-- He said, "I've told you that's my call." And he's looking at his watch. He wants to get out of there. So instead of waiting for the guy that was in the chair to get out so that I could sit in the chair, he said, "Stand behind that guy."
[00:09:44] Don: Well, the guy that was in the chair was not colorblind, obviously, so my responses were just a millisecond longer than the the person. So, but he said, "Red, red," and I said, "Red, red." And he said, and the corpsman says, "Sir, I guess you're wrong. And I guess all these other people that tested you were wrong." So I was in Officer Indoctrination School.
[00:10:08] Debra: Tell me about when you met Brenda, AKA Magoo. Tell me about meeting her.
[00:10:14] Don: We met at Northwestern. She and I were in the same geology class for lab. The seating was, she's McClure, that's her maiden name. I'm Mallet. So we were split by one person. and, um, I'm glad I'm telling the story, not her, 'cause she, she'd be right now interrupting.
[00:10:36] Don: Um, but it was, um, we got fixed up by another fraternity brother on a, on a blind date. Well, she knew who I was, but I'm a doofus. I don't pay attention to names or anything else. And I noticed she would look at me and smile that, that, you know, infectious smile she has and I wouldn't respond. until I realized, you know, when I went to pick her up, this is the person in the lab and we, we hit it off.
[00:11:03] Don: She thought, she thought I was too serious in the lab, but, you know, uh, we enjoyed each other's company and had some beers and the rest is history. We started a date and, uh, then it became serious sophomore or junior year. It was just, just a neat situation. It worked out well.
[00:11:20] Debra: Wow. How long have you been married?
[00:11:22] Don: Uh, 53 years.
[00:11:25] Don: Wow. And how old are you?
[00:11:27] Don: 76. Yeah, I'm a geezer. Yeah, absolutely. Yeah. I don't know where I parked my car but other than that, I'm a happy guy.
[00:11:36] Debra: You look damn good, Don. I gotta tell you.
[00:11:38] Don: You know, it's, as I said, I look back on this thing and I've had it pretty good. Look, damn, I've made it to old age. I've made it to old age.
[00:11:47] Don: I, you know, I'm lucky. I can remember being at Normandy. Uh, the last one was the Belgium and the Netherlands. The Holland trip , World War I, it's just one freaking battlefield cemetery [00:12:00] after another. That's, there are thousands. Yeah. Never made it to old age. I'm lucky. That's, that's the way I see it. And I think that's helped me through some of this.
[00:12:09] Debra: Kind of, the way we started the conversation before actually I started the recorder that we have health care.
[00:12:16] Don: Oh yeah.
[00:12:16] Debra: And we have great healthcare.
[00:12:18] Don: Oh.
[00:12:19] Debra: And what would we be doing if we didn't have these doctors that we can go to?
[00:12:24] Don: We'd be waiting and waiting in hopes that whatever this was is going to go away. And when it doesn't go away, and our loved ones and our friends said, you've gotta do something about this, we then show up at the emergency room.
[00:12:39] Debra: Yeah.
[00:12:39] Don: And that's not the way it should work. That's wrong.
[00:12:42] Debra: And we have communities of people that support us.
[00:12:46] Don: That's absolutely,
[00:12:47] Debra: That's huge.
[00:12:48] Don: Yeah. Yeah. We really, really feel, I'm not hole up in some little apartment living on, you know, a, a pension or a social security and frightened. Um, mm-hmm. and, um, absolutely
[00:13:05] Debra: Listening to Don talk reminds me of the legend of two wolves, and I'll let you Google the origin of that story since it's a little controversial, and I'm gonna tell it to you and be very gender inclusive. So there is a grandparent trying to teach their grandchild about life, and the grandparent says There is a fierce battle going on within me.
[00:13:29] Debra: It is a battle between two wolves. One is evil. And that wolf is anger and envy and resentment and hate and arrogance. And then there is also a good wolf. And the good wolf is love and hope and compassion, and generosity, and faith and trust, and the grandchild asks, "Well, which Wolf will win?" And the grandparent simply replies, "The one I feed."
[00:14:10] Debra: So I listen to Don and he's definitely feeding the good wolf. I mean, he could be feeding the evil wolf and saying, This really sucks. I have this terrible diagnosis and I have so much life ahead of me I thought I would get but instead, he's talking about how he has healthcare and he has a family and supportive friends, and he's grateful for his life and all the things he's managed to experience.
[00:14:38] Debra: And he has nothing but gratitude and he's feeding the good wolf. I think this is such a great attitude to have no matter what’s happening in our lives—even the small things. You know how it is, you can feed whatever it is you’re ticked off about. But if we choose to feed the good wolf, it’s a whole different story.
[00:14:44] Debra: It's hard to, to say to your kids, I'm gonna die from this, so let's try to be okay with that. That's the harder work. So what I wanna know, Don, is when you lie in bed at night and you're not asleep, what do you think about that? I mean, what?
[00:15:01] Don: Mm-hmm. . Yes.
[00:15:01] Debra: What are your beliefs around death? Do you think you go somewhere or what happens?
[00:15:08] Don: What I think about in bed, I worry about my family, love of my life. Magoo, she can be. , she's gonna be fine. But I, I do worry. I'm not afraid of death. I have a lot of people to thank and say goodbye to, and, and, and, and this is one of the areas us talking, you know, right now, since they have started this aggressive protocol, I have been able to continue.
[00:15:35] Don: To participate in most of the stuff that was important to me. I'm still involved with the church. That's very important to me. Those are things that I want to continue to be involved with and, and yet I find that a lot of people will basically say, you don't need to do it. Just, you know, or I'm left out and that upsets me when I'm left out. I said, you know, I'll make that call if it's okay with you.
[00:15:57] Debra: That's an important thing, [00:16:00] that's a big issue that people, assuming we know their motivation is good. Right?
[00:16:04] Don: Absolutely.
[00:16:04] Debra: We don't wanna, you know, burden Don, but then when you're, you're left out of the equation, you feel like, well, I am, I'm useless now. I have no value whatsoever. I'm a sick person.
[00:16:15] Don: I, I, you know, I, I have wouldn't put it like that, but you're exactly right. And. Uh, I'm not there yet.
[00:16:23] Debra: Don was right. He wasn't there yet. There meaning being too ill to participate in life. , but he did have a very close friend named John who was at that stage.
[00:16:37] Debra: This was months ago when I, you know, I was healthy and, and, uh, we were out at lunch and John said, wait a minute, I've got a question for you. And I said, well, what is it? He said, we know how my game's gonna end. Would you be available at a memorial service? to speak as far as my involvement with the church.
[00:17:01] Don: Wow. And I said, maybe, I'm not sure there's much to it, but I'd do it. You know, yuk, yuk, yuk. And then once I was diagnosed, we were out at lunch and I said, John, we got a problem here. And he said, what's that? I said, I don't know who the hell's gonna make it to finish line first.
[00:17:20] Debra: So for you, if you imagined what you would consider your perfect death, what would that look like?
Don: Having time, which I've been blessed with, to reach out to people, to reconnect, to do some of the unfinished business, to do the, to do the reprioritizing, which I'm doing not, with the discipline that I should, but--
[00:17:44] Debra: --So that's all the living stuff I'm,
[00:17:45] Don: that's the living stuff I can say.
[00:17:46] Don: That's the living stuff. , but I'm talking about the actual exiting outta your body, which is granted harder to talk about.
[00:17:53] Debra: Well, I really haven't given much thought. I probably should. I think the exiting process will, uh, in a, in a perfect world, I would like to avoid a lot of discomfort. I would like to avoid a prolonged process that negatively impacts on all my loved ones.
[00:18:16] Don: Mm-hmm. . Um, that's about as far as I've gotten. And that's not very damn far.
[00:18:22] Debra: Do you wanna die here in your home?
[00:18:24] Don: You know, right now, yes. But right now I don't want a lot of people gathered ground. Um, and that brings up some other questions. Do I want my grandchildren to see Papa Don working to try to get that last breath? I'm not sure I do.
[00:18:45] Debra: Here's another perspective that I'll offer you. Do you want your grandchildren to see that death is natural and not scary? And can they watch Papa Don exit gracefully? And maybe, maybe you'll be, I don't know, skinny and pale and look like hell, but can you show them that you know what really matters is that your heart is still full and that you still can experience joy. I mean, that's just something to think about.
[00:19:15] Don: Absolutely.
[00:19:16] Debra: What, see, th this shows our cultural attitude toward death. I don't want the kids to see me like that. But why, what is it like that? What does that mean? You know? And and why, because what's that saying is people that are physically unattractive, we, we wanna shut that out. We don't wanna see that. It, it is something to think about.
[00:19:36] Don: I think you're absolutely right. I want my sons and daughter-in-law's input on, on something like that. It, yes, this is life. This is part of the journey.
[00:19:45] Debra: So you're gonna start thinking about, Hmm, this is gonna end for me. And what is that? Like, what's the next adventure? Or is there another adventure? Or can we just live with that uncertainty and mystery and be okay with that?
[00:19:59] Don: At least at [00:20:00] this point. I'm okay with that. Yeah. It is a mystery out there. I don't know, but I feel strongly that, um, I'm, you know, it's not gonna be over, but I don't know. Beyond that, I can't defi, I don't think I'm gonna be hiding behind the cloud looking down or anything like that. You know, that. But, but I, I, I, you know, and it's still formulating,
[00:20:25] Debra: Well, I have to say, I'm sitting here looking at you. You are wearing shorts and a polo shirt and you're tan and you look fantastic. Like you're about to go play a round of golf.
[00:20:36] Don: Well, I knew you were coming, so I've spent two days, of course, I cut myself to shaving this morning. I'm so nervous about your arrival.
[00:20:42] Debra: I wondered what that was. I thought--
[00:20:43] Don: Oh, God,
[00:20:44] Debra: --maybe you popped a zit.
[00:20:45] Don: No, no, I'm just an old man. I can't get it straight.
[00:20:58] Debra: So here's my final say for today: besides feeding the good wolf or focusing on gratitude, Don also kept his tremendous sense of humor. I think he took life seriously, but he didn't take himself seriously, and that can really change everything. And I wanna give a note of caution here. If you have a friend who is just starting treatment, like Don, I wouldn't advise barging in and asking them if they wanna die at home, and what do they believe happens after you die?
[00:21:35] Debra: There was one point in our conversation where Don said, I'm not there yet, and if I wasn't interviewing him for this podcast, Our conversation would've been totally different. It would've been about the present that is, unless you know, Don wanted to talk about the future or what he thought about death.
[00:21:56] Debra: You know that advice. Be here now. That's really good advice. So if it hadn't been for this podcast interview, I would've just been talking to him about what was happening right now. So the takeaways for this episode: feed the good wolf. Don't lose your sense of humor or keep your sense of humor. Be here now.
[00:22:22] Debra: Oh, and also, you know, it's, it's their life it somebody who's facing death. Let them make as many decisions as they want. Include people unless they no longer want to be included, and just trust that they will tell you. And if you're not sure, hey, you know what you can ask. Is this feeling like a burden? Do you wanna keep doing this?
[00:22:49] Debra: This is the last episode for season one of The Final Say. Please stay tuned for more episodes in 2023, and I'll be talking with people of different ages and people who are choosing to die by voluntarily stopping eating and drinking or VSED, V-S-E-D.. And many more interesting conversations with people facing death.
[00:23:14] Debra: If you have a story or know someone who would like to be on this podcast, head on over to the final say podcast.com. Click on the contact tab, which is way over on the far right there, and leave me a message and I would love it if you went to Apple or Spotify, wherever you hear this podcast, and leave me a really good review, but an honest review.
[00:23:41] Debra: Okay? We gotta be honest .And as usual, thanks to Blue Dot sessions for providing the music. You guys rock. So I'm Debra Jarvis. And thanks for listening [00:24:00] to The Final Say: Conversations People Facing Death.
I'm
7. New Joy
Harlan Young
[00:00:00] Harlan: Here I had this scary illness in having the doctor say, Oh, you have cancer? I thought, Sure, that my life was over. Whatever. So you think all those scary things, right? But it truly has a silver lining. For now, I have better contact with family and friends. We're writing each other more. Just, uh, the, my quality of my, uh, relationships with family and friends just took a big step up.
[00:00:40] Debra: I'm Debra Jarvis, and you are listening to The Final Say Conversations with People Facing Death. This is the podcast where you can get comfortable talking about death and learn some things about life from people who are facing death. Now in this episode, I'm talking with Harlan Young. We're gonna find out how facing a terminal illness can actually improve your social life.
[00:01:08] We'll ask the question, is it possible to go from being an introvert to being an extrovert? We'll also talk about coping with limitations, finding new joy and how sometimes the hardest thing about your own death is not your own death, but thinking about how it will affect your family and friends.
[00:01:34] Harlan had lymphoma 12 years ago, but now it's progressed to Myelodysplastic syndrome or MDs, and I'll let him explain it.
[00:01:47] Harlan: So, um, so now I have what's known as MDs. Basically, it's failing bone marrow. It's just that my bone marrow is increasingly producing less and less of the three main things. It does red blood cells, white blood cells, and platelets. They just said it will progress. It's kind of complicated, but they have a chart and you can see on the chart.
[00:02:11] Well, okay, I'll live one year and then I'll die. Or maybe I'll live two years and I'll die. But the main thing is you're not gonna cure it.
[00:02:20] Debra: What was it like for you when you realized, okay, I'm gonna die from this?
[00:02:26] Harlan: Well, uh, except for the occasional waking up in the middle of the night kind of fearful and feeling down about it, the great majority of the time, I, I accept it.
[00:02:37] Debra: You're just doing your life.
[00:02:39] Harlan: Yeah. Even back during my lymphoma time, I remember talking to friends and saying, You know, I've had a wonderful life already to age 60. I've had a wonderful active life. I have so much, I'm thankful for lot of singing years and decades of singing. So if I get out of this, it's just gravy. But if I don't, I will have had a wonderful life. Well, so then fast forward to now I'm 73 and oh my gosh, I had another 12 years of life, so I even feel more like that.
[00:03:19] Debra: What's been hardest thing about all of this right now?
[00:03:24] Harlan: Hmm. I guess the hardest thing is a few months ago. I was miserable all the time and I was still in treatments, so my energy was way down. My interest in doing anything was way down. My, I had no, My interest in eating that's always makes me feel bad is when you look at food and you just don't want to eat it.
[00:03:46] You know, I lost 15 pounds during that time, and so, I thought, well, they did give me the treatment and I got extra months of life, just like the doctor said, but it has to come to an end. And then [00:04:00] when the treatments aren't working for you anymore and you're starting to feel bad and your counts are going down, but not coming up like they're supposed to, I guess this is the way it is. It's just the rocky slide to the end.
[00:04:16] Debra: Tell me what gives you comfort and strength throughout this whole experience?
[00:04:24] Harlan: The main thing really that does give me comfort and strength is this whole new life that I have as a social person,
[00:04:34] Debra: How do you explain that? Is it your meds or is it--?
[00:04:36] Harlan: Well, I, first of all, because I couldn't do any more physical stuff I like to do. I can't travel in an airplane. I can't go to restaurants, you know, theaters, da da.
[00:04:46] So I'm kind of confined to home most of the time. And so people from the church, and especially from the choir and family and other friends, They were all reaching out and lead thinking of you and best wishes. And so actually they kind of started the ball rolling that, wow, all these people, they're just, they're just so wonderful and so caring.
[00:05:05] And so I would get back to them and say, Oh, hey, we can come over and visit and we can come over and bring food. And so that just snowballed. And now, oh my gosh. The main part of my life now from going from an introvert who just wanted to mainly go skiing to now, I'm just entertaining every week.
[00:05:25] Debra: You're an extrovert!
[00:05:26] Harlan: I, well, I don't know if I'll go that far, but I act like an extrovert. That's certainly true. It's really kind of amazing that I, I've, I've completely kind of changed the focus of my life, uh, to. Well, it's what I can do and it's worked so well. I never imagined that such a thing would happen that, oh, I'd be stuck at home.
[00:05:46] I would just have to work puzzles and games and read books, and maybe somebody would come over and visit me sometime. Well, I hardly ever have time for reading and doing puzzles because we either going to somebody else's house to visit or they're coming over here. So that is, that's making my life wonderful right now.
[00:06:03] Great. I'm just wonder. If I'll be able to hang on to as much positive enthusiasm as I have now.
[00:06:15] Now one thing that that helps, that gives me a good, uh, feeling about that is, I took care of my mom in a nursing home, or, I mean, I had her in a nursing home for a number of years and went and visited her all the time, and she was wheelchair bound in osteoporosis and she, Oh my gosh. She had such a long list of things, but every time I went to meet her, she was happy and she, and here she is in such a grim circumstance and environment and.
[00:06:42] She was always bubbly and happy, and I'm just thinking, you know, Mom, I hope I got the genetic code from you for that because that's where I wanna be when I'm miserable.
[00:06:58] Debra: What are your beliefs around death? Ooh, I mean, in your gut. I know what they tell us to believe, but where are you with that?
[00:07:07] Harlan: Ooh, you may not like the answer. Even though I've been going to church for 30 years,
[00:07:12] Debra: I like all answers.
[00:07:13] Harlan: Oh, okay. I just think it's dust to dust. You die and, And that's the end. It'll just be the same as for all the billions of years before you were born.
[00:07:25] There'll be nothingness. You'll just be dust. So. Heaven is just a nice concept that people like to clinging to, but it doesn't work for me. I'm an engineer and I used to believe it at all when I was growing up. I went to church. I believed it all, you know, wow, God and heaven and all those things. But by the time I became a young adult and looked around more at the world and studied my engineering and all that sort of stuff, so I was very skeptical.[00:08:00]
[00:08:01] Now I love going to the mountains. I have kind of a spiritual thing with Nature Mountains, the beauty of the world. I, I got all that, but as far as a God being out there somewhere, who cares what's going on down here on Earth? I, Sorry. I just can't, You're not, by the way, . Jesus is a terrific character.
[00:08:20] I'm all completely, I'm a big fan. I'm a big fan of Jesus. Okay? So my, with the God thing, uh, you know, I see, and I've been going to church for 30 years. I've been seeing what wonderful effects it has on so many people over the decades. Man, it's a good thing. Church is a wonderful thing. So I'm very, very high on the church, very high on churches in general.
[00:08:43] If it works for you and really brings you joy and happiness, oh, you're a lucky guy or woman,
[00:08:51] Debra: what would you want someone to know who has gotten a terminal diagnosis and is very fearful? What would you want them to know?
[00:09:00] The main thing I think I would say is you have to just look for new joy in what you can do. You've gotta let go of the things that now your new circumstances prevent you from doing, and it won't be like your former life, you know?
[00:09:19] You just have to kind of come to grips with that. But, Rather than just go into a hole and say, I can't do what I used to do, and so I can't stand it anymore, and I'm just gonna, I'm just gonna feel sorry for myself all the time. But if you can resist that people is the number one thing to go to. I mean, that's certainly what's happened to me is I have discovered being social. Like I say, it's really quite remarkable.
[00:09:47] How's it changed your relationship with Kathy?
[00:09:49] It's always been good and it's continues to be very good. Now there's more work for her because she's always going to the hospital with me and sometimes she has to drive me. These days I'm able to drive myself, but we still, she always goes with me, and so certainly there's an impact there, but she has assured me that she's dedicated to doing this and that she's feels good about it, and she wants to carry on this fight with.
[00:10:18] And so I'm trying to take her at a word, but sometimes when I look at her, she looks sad.
[00:10:31] How is it for you when you think about leaving Kathy when you die?
[00:10:37] Harlan: Oh, it's almost unbearable because I'll leave her. Every once in a while that thought comes to me and cuz I know if she were dying and then she left, I'd come home, the house would be empty, she wouldn't be here and I would just, I don't like to think about it cuz it's painful
[00:11:10] Now she has a wonderful network of family, friends, the church. And so I know she'll get through it and gosh, people by the thousands are doing it every day right around the world, getting through the loss of your loved one, your spouse or whatever. And so it can be done, and I know she'll do it, but I know, I know that initially she'll be in.
[00:11:40] And cuz I'll be dead. It won't hurt me , but she will be still feeling it and that that really, Oh yeah. I don't like to think about that at all, man. That idea of leaving her. That really does cause me great pain. The most painful thing that I can [00:12:00] really think of.
[00:12:06] Debra: Have you ever had people who have died visit you in your dreams or anything like that?
[00:12:13] Harlan: Oh, well, sure. I have a twin. I had a twin brother. Really? Yeah. He died tragically in an auto accident into 2008, so of course I was devastated. And, uh, you know, I mean, I got through it, but it was tough cuz beside being my twin brother, he was my number one soul mate.
[00:12:32] We could communicate like nobody else had ever communicated to them. And so that was, that was a terrible loss. He was just about to retire and we had all kinds of plans of traveling and spending more time together. Cuz he lived down in California, so I didn't see him on a regular basis. So, yeah. So that loss.
[00:12:50] Well, as you can imagine, I certainly did have dreams with him in it for a long time after. I don't think I, I rarely do anymore. Yeah.
[00:12:59] Debra: What was his name?
[00:13:00] Harlan: Doug.
[00:13:01] Debra: Doug?
[00:13:02] Harlan: Yeah. Doug Young.
[00:13:03] Debra: When you dreamed about Doug was it pleasant, or did he have anything to say to you, or do you remember?
[00:13:09] Harlan: Geez, I don't, but I can just categorically say that just all dreams are weird. Nothing normal happens in a dream. If I wake up and am actually aware of a dream that I've been having, Oh, that's so weird. That's really, that's how I sum up dreams. They're all weird. There's no normal dream .
[00:13:31] Debra: Okay, Hold everything. Hold everything. I think dreams are supposed to be weird. It's exactly their strangeness that makes us contemplate them and think about them and try to find meaning in them. But I don't know. I guess there's those of us who think they're just plain weird. But I invite you to stay open to your dreams. Stay curious, be curious and see if there's anything that your dream. Might offer you,
[00:14:06] Well, what would you want people to know who are afraid to come visit? People who are very ill, they're like, I don't know what to say. I don't know what to do.
[00:14:16] Harlan: I'd like to try to talk 'em into going and getting through that and going to visit them. That almost certainly they will have a positive impact on that person. Just because again, of all the wonderful connections I've had with people, I mean, I think connections with people. That's really where it's at
[00:14:39] Debra: Before you got sick. Was it difficult for you to visit people who were extremely ill and facing death?
[00:14:45] Harlan: Hmm. You know, it might have been funny how I have a new perspective on it now, but I think I have a better attitude about that now. Yeah.
[00:14:55] Debra: Who do you have the deepest conversations with about dying and death and sickness? All of that.
[00:15:02] Harlan: It might be the men's group.
[00:15:04] Debra: Harlan was attending a support group at his church led by Peter, one of the ministers there, and there were about, I think three or four men in the group. All of them that had different diagnoses and all of them who were facing death.
[00:15:21] Harlan: I think maybe the men's group is the main place where I really talk about how things are really going and how am I facing things.
[00:15:29] Debra: And how is that for you? Do you feel good after you leave? Or you know, how is it for you to be in that group and talk about these issues? Cause it's pretty unusual. In our culture to do that.
[00:15:39] Harlan: Yeah, well it is. I feel very good about them. And of course the men's group is kind of a prepared thing. You know, we're working around a very big, thick book written by a guy who did palliative care doctor for a decade.
[00:15:53] Debra: What's the book?
[00:15:54] Harlan: It's called Die Wise.
[00:15:56] Debra: Oh, I've got a copy of it.
[00:15:57] Harlan: Yeah. Peter read the book and he said, This is [00:16:00] marvelous. Everybody should read this and learn how to focus your life in your final months or whatever. So that instead of just being a miserable wretch, now you can die feeling good about your life and the world and not being a miserable wretch because it
[00:16:16] Debra: It sounds like you've managed to find joy in every day.
[00:16:20] Harlan: Every day. Absolutely. I love every day, and I want it to go as long as it will. I'm having really quite a great life.
[00:16:31] Debra: So here's my final save for today. I'm glad Harlan reminded us to look for joy and beauty every day. And I know sometimes that's really hard, but I found that just the mere act of searching or being. Open to finding joy. Beauty changes everything. Now. Harlan mentioned the book Die Wise. It's truly a really good book, and it's by Stephen Jenkinson and you can get it wherever books are sold.
[00:17:01] And I also wanna give you a heads up that the organization Compassion and Choices is having a virtual event where you can hear some great stories and meet some civil rights icons and pioneers of the whole movement. And that's all happening on October 27th. And I'll put a link for that event in the transcript of this episode. https://compassionandchoices.org
[00:17:25] Which reminds me if you have any feedback or questions or ideas or stories, hop on over to the website, the final say podcast.com and let me know. Or just let me know how you're doing. This has been the final say, conversations with people facing death. I'm your host, Debra Jarvis, which brings me to the fact that several people have asked me why don't I run credits at the end.
[00:17:55] So here they are. The Final Say is hosted, produced, edited, marketed, and angsted over by me, Debra Jarvis. Thanks as always, to Blue Dot Sessions who provided the music, and thanks to my husband who's always willing to listen to the rough cut and give me feedback. I hope you find joy and beauty in your day today.
[00:18:22] Harlan: Connections with people, that's really where it's at.
6. Death With Dignity and Humor!
Diane Graham
DIANE: I want people to know how great I think death of dignity is and how great it is that this great state of Washington allows us to choose our own destiny. There's such a stigma with death of dignity. If anything, it should. Allowed in every state and there should be no stigma with it because it's one of the most courageous things that you can do.
DEBRA: I'm Debra Jarvis, and you are listening to the final, say conversations with people facing death. This is the podcast where you can get comfortable talking about death and learn some things about life from people who are dying. In this episode, I'm talking with Diane who chose to use the death with dignity law here in Washington state.
I know Diane because I've been friends with her wife, Elaine, for several. Now, I know you may have some strong religious, ethical, or moral beliefs around aid and dying and that's okay. I just asked that you would listen to this episode with an open mind and an open heart. Now, besides death with dignity, we'll also talk about what makes life worth living and what makes death seem like a better option.
We'll also discuss her near death experience love at first sight and the perfect hamburger.
When I walked in, Diane was lying in bed, wearing a big grin and a t-shirt that red, not dead yet. She was diagnosed with multiple system atrophy, which is a neurological disease, similar to multiple sclerosis and ALS or Lou Gehrig's disease. Diane's married to Elaine and they have two daughters. She lived with MSA four years before she was ready to use the Washington state law, which allows medical aid and dying. I asked her to explain exactly what MSA does to your body.
DIANE: It shuts down all the functions of your body that your brain will normally tell you to blank. My brain. Doesn't tell me to blank. When you take a breath. Your brain is telling you, you need to take air. Mine doesn't do that.
DEBRA: How do you know when to blink?
DIANE: You make yourself blink. That's why a lot of patients with multiple system atrophy, a lot of people have dry eyes because the blinking function. The other thing it does is it your lungs start to atrophy, your mus, start to atrophy. You won't be able to swallow, then you won't be able to talk. And that's, that's when it gets hard.
Most people go on feeding tubes. Once they get to that point where they can't swallow. The other thing it just done is your ability to walk. So your bedbound, right? I am bedbound. I've been bedbound since shortly after Christmas of last year, Diane saw six doctors before she got a final diagnosis. That I, that we, that we had MSA and I was so happy because I'd finally gotten diagnosed.
I looked over Elaine in her face was white. I said, “Honey, isn't that great? We have a diagnosis.”
And she just said, “Yes.”
The next morning she left to go to work and I got on the internet and looked up MSA. I thought, “Oh, holy crap. That's not good.” So when Elaine walked in, I said, “Honey, I have MSA. That's not good.”
And then that's when we both started crying. Then that was the last time I cried about my disease.
I had an episode where I actually passed on. They don't know what caused it. They don't know if it was the disease or too much medication at one time, but I did cross over. I saw the lights.
DEBRA: Tell me about that.
DIANE: That was pretty cool. It was black and white. It wasn't colorful the way most people describe. And I remember a door at the end with some type of a figure arms were flowing. And I was like, telling me, come this way. And I kept saying, “No, it's not time yet. It's not my time yet.” And I said, “Pull me through, pull me through.” And I extended my arm and my spiritual advisor pulled my arm and pulled me back. Cause I knew it wasn't my time because I knew I had things I needed to say to get done.
DEBRA: Tell me about your decision to use the assisted death law.
DIANE: Well, after reading up on MSA and hearing all the horrible stories of how life ends and how it never gets better, it gets worse. And my pain level is at an eight at the time.
[00:05:25] And living at an eight is not living, I am in pain all the time, and even a little movement hurts. And so after reading up on the horrible ways to die with MS, I started looking more into death with dignity because my mother tried to do death with dignity, down in Oregon and failed.
DEBRA: How did she fail?
DIANE: She didn't get everything ready in time. [00:05:50] By the time she was ready to go for it, she could hardly pick up anything and she could hardly talk. So that window passed her by. She did not qualify. So I wanted to get all my ducks in a row as soon as I could. So. In 2015, when I had been diagnosed, I called death with dignity and it was way too soon. I know Elaine was having a really hard time with it, but I kept telling her all I wanted was the information.
So I could get all the paperwork in time so I could have my doctors ready so that all of that would be good to go.
[00:06:29] I knew it wasn't ready. So I just kind of put it on the back burner and knew that I, I had to get a consulting and I had to get a prescribing. So the doctors I started going to, I would ask them about death with dignity. And a lot of them said being doctors yet, they are here to keep people alive not to help kill 'em,
So you know, four years we didn’t talk about it again, but I kept asking my doctor and none of them would do it.
[00:07:02] I needed to make sure that Elaine was going to be okay. That was my number one priority that somebody was gonna have her and keep her heart safe. My sister-in-law in-law was here. She said, “We got her. You don't have to worry. We've got her. You're okay to go. Whenever you wanna go.”
That made me feel, made me feel able to say goodbye to this world and plan on going to the next.
DEBRA: You feel good about Elaine now that she's taken care of?
DIANE: [00:07:29] I feel great. I know that she's told me herself that I can pass on. Now that she's feeling good. Her sister's got her heart taken care of. Now that I know that she's okay. I'm just finishing up little projects.
DEBRA: Tell me about how you guys met and how long ago that was. It was in October of 2005. There was a, uh, women's dinner group that got together [00:08:00] and we walk into where the group was. And I saw this woman that took my breath away. As soon as I saw her, I knew that we were going to get married, that we were going to have a love of a lifetime and the spark went off and there was a chair right next to her. So I was scooting my butt over there as fast as I could, but the friends that I were with did not want to sit down with the group.
[00:08:29] They wanted to sit so far away from them, but all I could do all night long was look at Elaine's back and saying, I should be there. After the dinner got over with, we were walking out of fibers and I made a comment that how can this be a social group? If not one person talked to us and this woman overheard me and came down and introduced herself and said, “That's not the way of this group is.”
[00:08:54] And then. The door opens and out walks Elaine. And my heart goes th-thump, th-thump, th-thump, and it happened to be that she and this woman were great friends. And so God intervened.
DEBRA: Did Elaine feel the same way when she saw you?
ELAINE: Yes, it was instant for both of us.
[00:09:20] The last 15 years of my life have been the best. But I keep saying, we need to get more people in here to help me so she can go back to just being my wife, not, not my caregiver.
DEBRA: It seems like the hardest thing about all this for you has been watching Elaine and the effect your disease has had on her. So besides Elaine, what's been the other most difficult thing for you having MSA.
DIANE: [00:09:49] Is losing all control. I can't drive anymore. I can't walk anymore. I can't go to a movie. So one by one, you lose your ability to do something or not being able to go outside, not be able to see the stars anymore, not be able to go on the road trips with the kids. You know, not being able to Elaine out on out on a date.
[00:10:29] And for me, when I lose my voice, if I lose my voice before I have the chance to death of the dignity, that's gonna kill me because not be able to laugh or to say a joke will be my hell. I think everybody has a certain hell that they don't wanna go to. That would be mine.
DEBRA: Tell me about your spiritual beliefs. Tell me about what you were raised to believe and where you are now.
DIANE: I was raised as a Methodist. I just remember sermons about saying gays were bad and that always left a bad taste in my mouth. That really turned me off and I didn't believe in church or God. I believed in my own, God, I didn't believe in the church.
DEBRA: What was your own God like?
DIANE: Kind loving, caring, open, affirming. Somebody that you could talk to. You know, I did talk to God a lot. But after I met Elaine and she kept telling me how wonderful the church she went to was. Yeah, right. So I went there and I was received with open arms and they made me believe that God is great, that God is wonderful, that God is in all of us.And this church family has come through with forming numerous times.[00:12:00]
But most people seek MSA as a curse. I see it as a blessing because it has brought so many different people into our lives than ever would've been in our lives.
DEBRA: Tell me about some of the greatest moments of joy you've had since being sick.
DIANE: The communication between Elaine and myself has opened up immensely. We're not afraid to talk anymore. We can talk. About the harder parts, death being one of 'em. I think you begin to take every moment you have a special.
DEBRA: You guys have a pretty amazing relationship. The last 15 years of my life have been the best. I was born the day I met her. She saved my life over and over again and is still doing it. She brought me back to church. She showed me what the love of a family is like. She just showed me love. I never knew I could be loved. I always thought I was an unloved person until I met her.
DEBRA: Is there anything that you wish that you had known sooner in life that you know now?
DIANE: That to love each other, every part of a community, I don't take life for granted, you know, live each day, love each day, laugh each day. I think that's one of the most important things that have kept us going it's we laugh every day.[00:13:50] So I don't think enough people laugh. What we decided yesterday is that we picked a date that I'm going to pass on. And that was like a monkey was ed off my shoulder because now I could say my goodbyes. In my own way to all my friends and family,
DEBRA: I asked Diane to explain the whole death with dignity process, which she did, but then I realized that the protocol is different in every state. So let me just say that for sure. You need two doctors. Who are going to agree to do this. And for sure, if you know, you want medical aid and dying, you need to start this process as soon as you get a prognosis of six months or less. The rules and the regulations and waiting periods may seem ridiculous, but they're there for a really good reason. You know, we don't wanna make it easy to knock off Grandma for the inheritance. And this should be a really well thought out decision, not something made in haste.
So there's built in safeguards so that you're thoughtful about it. So, if you are thinking about this for yourself, please look into the regulations in your state. If you live in a state in which medical aid and dying is legal.
DEBRA: What are you gonna have for your last meal?
DIANE: So I get a cheeseburger with bacon, no lettuce, waffle fries, and a chocolate caramel milkshake. That would be my last meal.
DEBRA: Wow. Then you could say it was so good. I about died . . . Oh, I did.
DIANE: I did. (laughter)
DEBRA: [00:15:47] I, I wonder if you could talk about, just for people that don't know about death with dignity, how the procedure for actually taking the medication?
DIANE: Yeah. What the procedure is, is there's no food five hours [00:16:00] before you're going to do it. Two hours before you take the medication, you take three anti-nauseous pills, and then that medication is already all, all done for you, it's powdered form.
[00:16:16] So all we'll do is pour it into the glass. And then what the doctor says is, is to use alcohol, to wash it down with I'm gonna have a Tom Collins. Because I, you know, I don't drink, but when I used to drink, you know, my drink or choice is with Tom Collins, with vodka and so poured in with the medication, which is like 800 pills crush down into.
Then you have to drink it all down. You have to drink it all down for three minutes, because by that time, it all solidify. Then once you get that down, then you. Take a couple sips with your Tom Collins and then five, 10 minutes later, you gently go to sleep. You don't wake up, but you might not pass on for four hours or 20 hours, but they think with.With me, I'll be doing it in less than four.
DEBRA: Do you think it'll be like it was the, the last experience you had?
DIANE: I think it'll be far better because I think by being black and white, it's like either you're ready to go or you're not. I think I chose the black part and saying, I'm, I'm not leaving. I'm putting my feet down and I'm staying right. But this time I'm going with open arms, open heart and saying, I am here, take me.
DEBRA: I know you're gonna be surrounded by so much love in this room.
DIANE:Yeah, I think that's, what's gonna be the best part is. Having all that love and knowing that you are leaving, being loved, being blessed with the friends of you that I've had. And knowing how much love that they have for me. It's like, it's all gonna be, they're all gonna pick me up. [00:18:22] I'm excited. Cause it's like, it's gonna be an experience like none other
DEBRA: Now I don't usually know the story of exactly how the death of any of my guests. But this time I do. And I was touched to be included in some of these events.
[00:18:54] Diane chose a day for what she called her Blessing Event or the Liftoff Celebration. And this was the time for close friends and family to gather around her and say goodbye. So the first thing, when we walked in the house, we were invited to choose an intention tattoo and I chose one that read, “She believed she could, so she did.”
[00:19:19] And then we gathered around Diane's bed, which made it pretty crowded, but that was okay. One person sang a chant, another person sang a song she wrote, and then. Someone pulled out a sparkling ball of yarn. It looked as if it was spun from crystals and diamonds. It was gorgeous. It was just so light and soft and starting with Diane they wrapped it around her wrist three times. And then the ball of yarn went to someone across from her who wrapped their wrist. And then we [00:20:00] just kept throwing the ball of yarn to one another and wrapping our wrist until we were all connected. And then after the very last person wrapped their wrist on Diane's command, we all raised our arms and suddenly we were in the midst of an iridescent and sparkling web.
[00:20:22] It was beautiful. And there was this collective gasp and we all stood in silence, just taking in the beauty of it. And I think we really are connected in this way, but you know, most of the time, well, for sure we don't see it literally like that, but we don't even think about it. And we all just stood there for a couple minutes.
[00:20:52] And then scissors came out and we cut the web, but then were instructed to turn to the person next to us and tied this magical yarn a couple of times around their wrist. And it was a reminder that we are all connected and connected to Diane. So the gathering was beautiful and sweet and sad.
And I'll tell you, it was hard for me to wrap my mind around the fact we were saying goodbye. I mean like final goodbye—“Here's what you meant to me. I will never see you again.” And then before we all left, Diane gave each of us a beautiful votive candle. A few days later on the actual liftoff day at five-twenty in the afternoon, just before Diane drank her end of life, Tom Collins, Elaine texted all of us and asked us to light our candle.
[00:21:56] And almost exactly one hour later, we got the text that read, “She's soaring. You can blow out your candles, say a prayer and cut off your bracelets.”
MUSIC
DEBRA: [00:22:16] So here's my final say for today, I really do support death with dignity, but I'll be honest with you. It boggles my mind, especially when it's a person, you know, we know and love because we don't want them to suffer, but we don't want them to go. So perhaps we accept this with just a tablespoon of ambivalence because the whole adventure can be such a mixture of love and grief and gratitude and relief.
I'm Debra Jarvis. And thanks for listening to The Final Say.
MUSIC
DIANE: It's okay to do death of dignity. That there's no shame in it and there should never be any shame in it. So I wanted to take that stigma away from it saying it just needs more support.
DEBRA: Everyone deserves a peaceful death.
DIANE: Exactly.
MUSIC
5. Won't You Come Home?
Bill Bailey
[00:00:00] Bill: People are afraid to talk about death because of their own sense of their mortality. If I talk about it, it's a recognition that that is part of life.
[00:00:31] Debra: I'm Debra Jarvis, and you are listening to The Final Say, this is the podcast where you can get comfortable talking about death and learn some things about life from people who are.
In this episode, we'll hear a story about someone's last words and how they were misunderstood. And we'll talk about how grief and joy often walk together, hand in hand, [00:01:00] and I'll talk about how living your life backward may be just the thing to help you move forward.
[00:01:11] Today, I'm visiting bill Bailey. He lives with his wife, Laura in a downtown Seattle retirement community. Bill was a pastor for several years. And I don't know, I guess the law of Moses was not enough for him. So he became a well-respected trial attorney in Seattle. He was diagnosed with Parkinson's six years ago.
[00:01:36] I asked him, what was your first experience with death?
[00:01:43] Bill: The first real experience was when I was contemplating going to divinity school and I was working in a church in Walla Walla, Washington. I got a call on a Saturday afternoon and I was working with the, with [00:02:00] the youth in the. That there had been a death of one of the teenagers.
[00:02:06] He was critically injured. Could I come down to the hospital? And I, I did. And his parents were there. This young man's parents were in the hall. He was undergoing surgery. A nurse came out and asked me to go into the surgical theater because Charles was about to die. And I represented the perspective of the church. That wouldn't happen today, but I watched him as they tried and tried everything to bring him to life and he died.
[00:02:47] And I was then asked if I would not be the first person to go out and tell his mother and father, I think of those people so much. [00:03:00] The grief that was there. It was followed up with a Memorial within a week. I rode in the hearse as the coffin was in the hearse and with the driver of the hearse, I introduced myself and, and he said, “Bill Bailey. Bill Bailey!” he said, “That explains it.”
And I said, “What do you mean?”
Charles had crashed into a tree in his car and he said, “I was in the emergency ambulance. And all he kept saying over and over and over was, ‘Bill Bailey.’ Bill Bailey. Bill Bailey.” He said, “I thought he was singing the song!”
Right. So that was my first profound experience, really deep down profound experience [00:04:00] of the yearning in the heart to connect, not, not to, to be disenfranchised, but to connect, hanging on with life. So that, that was my first experience with death.
Debra: Well, how have your, how have your experiences with death affected the way you think about your own death?
[00:04:25] I've been in a group as you know, Debra with persons that are dying. I feel in some respects like an imposter, because I don't know that I've got less than six months. Yeah. I know that, that I will die. I'm dying by, by my loss of memory and memory in a sense is everything that I am, the participants in that group know.
Debra: Deep deep down. Do you think it's, it's more difficult or better not to know exactly when you're going to die [00:05:00] or to have a clue?
Bill: I like to know, I'm veracious. I, I love knowledge. I, I just, I soak it in and I would much prefer a medical doctor if I were diagnosed. with stage four cancer, not to give me chemotherapy, not to hold me on and watch me just agonized toward death.
[00:05:27] Yeah, Lauren Arnett. He was my best friend. He contracted cancer and ultimately got to the point where they were going to recommend some more. Hold on to life, and he said, “No, I, I don't want to live the last few days of my life like that.” Lauren was such a beautiful person. And the way he chose to live life was, was with courage, [00:06:00] courage, recognizing that he was not immoral.I'm finite. I don't want to, I don't want to have further treatment. I want to live joyfully as, as much as I can.
Debra: There's something about having a (pardon the pun) deadline that can help you live more mindfully and intentionally. I think perhaps the issue for most people is they don't look at the deadline. They don't realize this could be your last day today. None of us.
[00:06:38] That's that's right, Debra. Yeah, that that's right. Charles Catrell was 17 years old when he crashed into that tree 17.[00:07:00]
Debra: Well, since Bill said he'd been working with the church youth group, you know, I just assumed that he'd grown up in a church. And so, you know, I asked him like, how did you decide to be a minister? How were you called?
Bill: I almost died with type one diabetes. My parents had moved from Portland, Oregon, and, and. And the doctor never took a blood test. Never took a urine test, diagnosed me with asthma. I went down to 89 pounds. I was same height I am now. And I'm not quite twice that, but, but 89 pounds. And I was in a, in a coma for a week.
[00:07:53] My parents took me to Portland, Oregon, and they diagnosed it immediately. And I was told by my [00:08:00] mother and father that they told them that they didn't know whether they would be able keep me alive. I came out of the coma in a week and I was, I was scared to death I was scared by death, not too diff-- I was scared to death, but I was scared by death.
[00:08:21] And I was in the hospital another four week getting adjusted to taking insulin shots. And that's when I said to God, “If you let me live. I will become a minister.” Wow. I had, no, I wasn't associated with any church. I thought I'm being punished. And so I've gone from that drury perspective on, on death to where I am now.
Debra: [00:09:00] Why do you think it's so hard for people to talk about death, to talk about dying and death? Why is it so hard for us
Bill: I, I think that the inability to talk about death is the foundation for all the fear that exists. It exists politically, nationally. It exists every day. And the response to that is accumulation.
We face death. with trying to accumulate beauty to hang on, to hold on. Instead of to let go, let go. Deep down. People are afraid to talk about death because of their own sense of their mortality. Or if I talk about it, it's a recognition that that is part of life.
Debra: Tell me what's been some of the biggest [00:10:00] surprises in your life.
Bill: Getting to know Laura [00:10:04] I knew she was beautiful. I knew she was smart, but I didn't know how truly wise she was. She is one of the most generous people I have ever in my life experienced. She sees good everywhere. Even, even in persons who are angry disillusioned politically far apart, getting to know that depth of Laura was a big surprise.
She says, she's an introvert by nature. There's a book called Quiet. I wish I'd read that book 40 years ago. Because when I was the talker and she wouldn't communicate, I thought she [00:11:00] said, “No, I was reflecting on what you were saying, Bill.” Uh, instead of spontaneously responding, that was a, that was a big surprise that,
Debra: Oh, man, I totally get that. I am a lot like Bill and thank God for my chaplain training. That taught me how to be quiet and listen, how to hold and appreciate the pause. The silent moment. I knew Bill had lots of amazing experiences, but what I wanted to know was what was the most life changing experience he'd had?
Bill: I, I guess, with the birth of our daughter, Carla, which was our first child three years after Laura and I were married and her birth was [00:12:00] June 28th, 1964. That experience probably is the most.
[00:12:06] Life changing profound experiences and I've had many, many, but that one counts. Number one,
[00:12:17] I was at home and got, and got a call. The doc said, “I want you to come down to the hospital.” I could tell by the tone of his voice, that there was something amiss. So something. Really sad. And I, I ask, “How, how is Laura?”
“ She's just fine.”
“How is Carla?”
“I'll talk with you when you get here. She's just fine.”But I want to share with you."
So I went to the hospital and he said, your daughter is a person with down syndrome. And he said, some people will tell you, put her in an [00:13:00] institution. And he said, "Don't listen to that. Don't. Even have an inkling of believing death, you take her home and you love her. Like you would love any child."
And the grief that was there in that birth gave me a perspective on life. That, that grief still is a part of me. It is a profound part of Laura.
[00:13:41] You know, Carla. She is amazing. And when this appointment comes her way, whether it's a change of plans or endings, she first tears up being told of death or change. Or ending, and then she [00:14:00] does this ever, “Well that's life.” She says that so, so that car Carla has been a, a, a deep influence. She is who I am.
[00:14:16] She is a part of me. She's a part of me
When I see her on rhythmic music in the, in the church to get up and dance, dance with me. That's life. That's life. Be alive. Yes. Celebrate that's here. And now. And I hope that I live life like that.
Debra: Question for discussion is where does that, that [00:15:00] essence of who you are, where does that go? I mean, you know, is there, is there a spirit, is there some kind of essence or energy that's never lost? So I don't know. What are your thoughts on that?
Bill: Energy does not end. It is life. Yeah. And I believe when I, when I die.[00:15:20] Then I'm gonna be part of the molecules of the many, many universes. And, and in that sense I will live, I will be part of what I was when I came into existence and I will be part of essence. I will be part of life. And I, I live with that joyfully at the same time. I don't wanna say goodbye.
Debra: What if it's like, there's this sparkling jewel deep within us. And that is our true essence. And when we die, our minds are [00:16:00] gone. Our personalities are gone, our bodies are gone, all that's gone, but that jewel, that essence, that energy still remains somehow. I don't know. I like to ponder this.
MUSIC
Debra: And what do you think about death with dignity? The laws that were passed here in Washington state?
Bill: I, I celebrate the fact that this state is one state. I grieve with the fact that that law does not apply to me because. Of the, of the requirement, which I think is good--that two physicians have to diagnose you is going, going to die within six months.
[00:16:49] I don't know that any more than, you know, you're going to live six months. Right. But I know that I'm dying. I know, I know profoundly.
Debra: you think about your own death and maybe you think about your Memorial service. What would you like people to be saying?
Bill: I want them to say, I hope they say Bill had such empathy, that he made a difference because he cured.
[00:17:22] I want them to laugh. I don't want at the end of the service that. somebody says, is there anybody else here that wants to say something about bill? And we sit there for another hour and a half listening to people talk about themselves rather than about, about Bill. I want joy. I want celebration. I want recognition of death as well as an embracement of life.
[00:17:53] I want us to embrace death. Yes. That it is, it is a gift [00:18:00] I would hate to live forever. (laughter) And I would, I would not like that. Uh, and I don't know why, but I just know that I wouldn't like that. Charles Catrell was 17 years old when he crashed into that tree. 17. Yeah, here I am. I'll be 79 in October.
[00:18:34] And, and, you know, I love, I love poetry and there, there is a poem about that recognition of joy, as well as one of tears. It's by Stanley, Kunitz called “The Layers.” He says, “Live in the layers. Not in the litter.” It's like he compares it to a geological experience that there [00:19:00] are layers of life and not recognizing the layers.
[00:19:07] We focus on the litter as is exactly in keeping with what you said just a few, few moments ago. We're focused on trivial, really trivial things. Oh Lord, I, somebody scratched my car or, or I don't like the way you're doing management or I don't care for this, or this is such a dreary place—it’s it's living in the litter.
[00:19:36] And that poem says live in the layers of life. I love it because that's, that's living.
Debra: And, and so do, do you feel like you've lived in the layers of life?
Bill: I, I do.
Debra: There's a daily uncertainty that we live with that I think just [00:20:00] speaking for myself, if I continuously remembered. I would much more easily let go of irritation and annoyance and grudges and resentment. Like, who's got time?
Bill: (laughter) I'm I'm with you there. Although, although I'm I'm, I'm I'm wonder who, who actually gets frustrated with. Minor bumps in the road in, in life. Uh, I don't wanna go there. Yeah, I don't want to, it is. It's really so I'm with you. Yeah.
Debra: Um, I just have to tell you, since we to go back to the subject of Memorial services, um, I've thought about mine a lot and you know, I kind of rewrite it every 10 months or so. And I've decided that I do want people to cry really hard [00:21:00] because I was so loved and they missed me and then I want them to laugh really hard. I want it all. And I'm planning on having. baskets of Hershey's kisses at the end of every pew and then when people can pass them down and you, you take a kiss from me, (laughter) Hershey's kisses were always extremely comforting to me, my entire life. So that's my plan. that's my plan so far. So we'll, we'll see it.
Bill: That's, that's fantastic because I . . .
Debra: Well, here's my final say for today, thinking about what we'd like people to say about us at our Memorial. That's a great exercise. It's kind of a way of living your life backward, but it just might be the way to move forward. [00:22:00] So if we ask that question, what would we like people to say about us at our funeral or Memorial?
[00:22:06] And then once we decide what that is, well, then the even more important question is how can we live right now? Who can we become right now? So that people will say what we hope?
So I'm thinking about starting a new segment to this podcast called, “What I Wish I'd Asked,” because I really wish I had asked bill why he left the ministry.
[00:22:35] This question was bugging me so much that I asked around and here's what I found out. He left the ministry because he felt that he could make a bigger difference in the world, in the field of law, which I think is a pretty good reason. So that's my final say for today, but I'm gonna let Bill have the last [00:23:00] laugh.
[00:23:00] Because he has such a great laugh
Bill: (laughter) I'm with you there.
4. Inhabit Your Life
Genko Blackman
Genko: I think I appreciating the reality of death helps you to appreciate the reality of life instead of take it for granted.
How I think about death is how I think about life. You need to be able to inhabit whatever situation you're in, fully inhabit it. It doesn't mean you have to like it. But you have to be able to appreciate what it offers. And there's a big difference.
INTRO MUSIC
Debra: I'm Debra Jarvis, and you're listening to The Final Say. This is the podcast where you can get comfortable talking about death. And learn some things about life from people who were dying. In this episode, we'll hear about the Buddhist perspective on dying and death; the story of a doctor who refused to acknowledge the death of his patient; and the answer to question, What is most important thing we can offer someone who is approaching death? What do you want on your tombstone?
MUSIC
Debra: Today I'm talking with Genko Blackman who is a Zen Buddhist priest and has stage three ovarian cancer.
Genko: I was raised in a Quaker family, so I had a kind of standard, Judeo-Christian understanding, overlaid with my dad's, Quaker, kind of way of looking at it, which was what happens after death, who knows?
Debra: Tell me, what was it that first, you know, peaked your interest in Buddhism?
Genko: Oh, well there was a couple things. One was that my father, was very much a serious meditator and he actually was my first meditation teacher. He would tell me things like, you will see people in meeting, moving around. Don't move. They can do whatever they're going to do, but sit as still as you can, because every time you move it distracts you from the silence.[00:02:00] I must've been like four or five when he told me this.
And the other thing he said, when I was very little was don't think about stuff. He said, don't worry it in your head. That's not what meeting is for. If you're going to worry something in your head, well, do what I do. He says, there's a deep, well inside of you. Take that worry, drop it deep inside the well and forget about it. And he said, it might not be during meeting, but sometimes something will bubble up and you will have an answer to your worry. That was fabulous advice. Yeah. So those were the two things he taught me. I felt like that was really wonderful that I had that instruction, but I also felt I wanted to go deeper and deeper in my meditation. In reading about it, it seemed like Zen meditation might be something that would deepen it.
So that was kind of the initial way I was raised . And at this point, I'm an [00:03:00] ordained Zen Buddhist priest, and there's a very specific way that Buddhism looks at death as well which is that it's part of a cycle of life and death. It's not the end of something.
It's just a transition into a new form of something. But also within the Zen context, we have an, “I don't know,” quality to it. So that made it a very smooth transition in a way to see it that way.
Debra: So tell me what if you like envisioning like your own death, what would be the best case scenario for you? What would that look like?
Genko: Boy, that it's not too upsetting. People do observe. So for example, if I'm in a lot of pain, that that pain is under control , last thing I want is for people to have to, have that as their last memory.[00:04:00] So that, that would be pretty important to me. I also don't really want, there to be a sense of desperation about it.
Genko: And I don't want to spend any more money or time or energy on trying to fix something that's not broken. It's just, this is the way it's unfolded.
Debra: Right. I love that word unfolding. This is the way it's unfolding. That's very, very difficult for people to accept that. Yeah. Why do you think it's so hard for people in our culture to talk about death?
Genko: I think that people see death as a failure. In some ways I know a lot of medical people do, particularly doctors feel like if they aren't able to keep you going, that they've somehow failed.
And, I think people buy into that, that somehow death is an unnatural thing or that there's some age at which you need to die. It's been interesting to me talking with people who are in their nineties.
Debra: Yeah. It's so much. It's just so the reverse of, of birth and growth, right? You get things taken away from you.
Genko: Yes. That's what it feels like. If you think that your life is a particular package of things. So I've got this, I've got that.
And then you're constantly really fighting to keep everything in place because in fact, nothing stays in place. That's a very important Buddhist teaching. Oh, you think you've got it? Yeah. Just wait till the next minute unfolds.
NARRATIVE
Debra: This is actually a Christian teaching too. Which I learned in the form of a joke. Uh, young seminarian goes into their mentor and says, this is all too hard. The studying the counseling, the prayer, the good behavior. I don't think I'm cut out to be in the ministry. [00:06:00] And the mentor nods and nods, and then says, don't worry, my child, this shall pass.
A few weeks later, the seminary and comes in once again to meet with their mentor. And says, oh my gosh, everything is absolutely wonderful. I'm passing all my courses. The people on counseling see a new way and prayer comes easily to me now. I can see that I am truly called the ministry. And the mentor nods and nods and then says, “Do not worry my child, this too shall pass.”
The point being. Nothing stays the same. And that's the curse and that's the blessing of it all. And what we believe about life and death totally affects how we experience. Our lives. So I asked this question.[00:07:00]
Debra: So how do you think your beliefs about death has affected how you're dealing with this cancer diagnosis and your treatment?
Genko: Okay, what about my life needs to change? Or does it need to change? What do I value? What's not so important? So it was really more in that context that I thought about it, instead of a sense of, oh, this is scary.
I'm going to die. What does that mean? Yeah. It's I already know what it means. Nobody knows. You know, my teacher would say, when I'd say, what, what is the Buddhist view of death? He said, oh, ah, I don't know. I, maybe I come back and teach you it's. So his point was, I don't have any recollection of dying, so I can't really give you good information about it.
NARRATIVE
Debra: It's easy to say. We don't know. And just, you know, shrug our shoulders about it. But. [00:08:00] Do we do that because we're truly okay. Not knowing? Or because it just kind of blows our minds? I'm not sure my mind can conceive, can comprehend. Not being me. Or not being here. When I really start to think about it. It's as if I get the computer spinning pinwheel of death, you know, I feel like.
I need to do a forced quit, a hard shut down. But there is one thing for sure that contemplating death forces you to do—and that is appreciate life . And as it turns out, Gengko feels the same way.
Genko: I think I appreciating the reality of death helps you to appreciate the reality of life instead of take it for granted.
How I think about death is how I think about life. You need to be able to inhabit whatever situation you're in fully [00:09:00] inhabited doesn't mean you have to like it. But you have to be able to appreciate what it offers. And there's a big difference.
MUSIC
Debra: Well, here's the question that I ran across recently and I thought, and I've thought about it a long time and I haven't answered it for myself. And the question is, if you could be given an envelope that has your exact time and date of death, would you open it?
Genko: Oh, no, because I just don't think that would be useful information for me. You know, for one thing, if it's more than a day out, I'm going to say, oh, I've got plenty of time. You know, I'll get to that. Yeah, the conversation I had with my mother in the last couple of years before she died, she said, don't you girls worry.
I will have all my paperwork sorted out so that you don't have to work with it. Well, she lied, of course, she didn't do anything with her paperwork. And we had to go through boxes of things, which [00:10:00] was, you know, she had legal documents mixed in with expired grocery coupons. So it was just ghastly. More than once I found myself yelling at her, going get back down here, you said you were going to do this, start this out. You can help me with this. Yeah. Otherwise it's all going to the shredder.
Debra: You know, my dad died a year ago and I just finished doing all that. And I just found myself saying over and over again, what were you thinking? Yeah. Why, what is it? What is this? Why are you, why did you save this box of obviously burned out light bulbs? Do you think you're going to fix them? Yes. I mean, yeah, so we can't know.
Genko: No, no. My mother had, she had other things very carefully sorted out. She had two old cigarette boxes from the forties.
One was very carefully labeled good sewing needles and the other was labeled bad sewing needles.[00:11:00] What is that? Why would you save a box of sewing needles that don't work?
Debra: Did your mom know my dad? (laughter)
Genko: Well, there is a generational thing. I think my mother's thing was trauma during the depression, because they were very, very, very poor, really poor during the depression. And I don't think she ever got over that fear of what if we might be able to use this for something.
Debra: Were you with your mom when she died?
Genko: Yes. It was actually kind of funny. She died and I'll never forget this. The night of George Bush's, 2004 state of the union.
My sister lived with her the last few years of her life and she kept the TV on constantly. But the one thing was she couldn't stand to see George W. Bush or hear him speak. So whenever he would come on, my sister had to leap out of the chair and go turn the TV off till he stopped talking.
So, uh,[00:12:00] my mother, she wanted morphine, she was having difficulty breathing and, it was hard to get a doctor who was willing to prescribe it for her. And that was because the doctor who was her doctor of record at the hospital said, well, you know, the morphine is going to suppress her breathing and shorten her life.
I, I said, do you have any idea how absurd that is? What you just said? You know, she would kind of like to go before the state of the union address comes on the TV to be perfectly honest, but this doctor could not connect with that. I mean, his job was to keep her alive. Even if that just meant 20 minutes more, that was success to him.
And he refused to give her morphine. And I talked to the nurse about it and I said, is there anybody else? Can we, is there any way we can do an end run around this guy? She said there is, but we have to wait for him to go home. And she found a doctor who had never seen my mother before,[00:13:00] but was willing to give her morphine.
He understood what the point was at that point. She wasn't on hospice. We hadn't had time for any of that. Wow. Gave her the morphine. So she had literally not moved or spoken for hours, but she had the TV on. Cause she always wanted it kind of as a comfort level. She'd been lying in my lap. And. They said, “Ladies and gentlemen, the President of the United States.”
She sat bolt upright and just glared at the TV set. And I had to kind of move her over and turn the set off. I said, “You're, you're right. You don't need to have his voice in your ears while you're dying. I get that.” That was our last conversation.
Debra: Wow. And then did she just kind of slip away?
Genko: She did. She laid back down, my sister had gone to do something. She, I could hear that she was skipping breaths . And, I said, “Mom, hang on a little bit because Sally isn't back yet. [00:14:00] Could you just hang on until she gets back? She nodded and she did, then my sister got back in about 20 minutes later, she was gone.
She just stopped that, you know, that gap between breaths, just that was it. There was no other breaths . So it was that peaceful.
And then when she died, he was the only doctor that came back to see how we were doing was very interesting. That is very, I never heard from the, uh, the other doctor again.
Yeah, no. In fact, the funeral director had to go to his office and, and stand in front of the reception desk and say, you need to sign the death certificate. She's been down in the hospital for a week and we need the body so that we can cremate it. That's terrible. It is terrible. But that was the only way he was.
He finally got the doctor to come out and sign it because he was announcing it in front of all the patients in the waiting room.
Debra: It's bad enough. As a culture [00:15:00] we're afraid of death, but when your medical providers are afraid of death--
Genko: --refusing to even acknowledge that it had happened . I'm sure he felt it was a personal failure on his part that this patient died. I mean, she was 86 years old. She had emphysema. She was ready, man. She was done.
MUSIC
Genko: I mean, it was just misfortunate.They ended up with that particular specialist from that particular office who was just a dinosaur about it. Yeah.
NARRATIVE
Debra: Okay, so, okay. Hopefully our providers are now more educated about death. I asked Genko to talk about the moments just before death and what that is like.
Genko: There's [00:16:00] a point at which the breath doesn't happen again, but also you're really aware of the active, dying stage . They are more aware of beings that might be in other realms and saying, that sounds fantastical, but it's like, because their energy is more crossed over as my mother would say, they have contact with different forms of energy than we do when we're grounded in this body.And, after seeing that, after experiencing that a number of times, I really take that seriously.
NARRATIVE
Debra: And what happens right after you die? In Protestant Christianity, the belief is that you die and immediately wake up in heaven—or hell. It’s different for Catholics. Many Catholics believe that if you’ve racked up a boatload of sins, you have to pay for them before you can enter heaven. So you go to Purgatory. I imagine this is like standing in the check-out line: the more you have, the longer it takes. Or maybe there’s an express line for 10 sins or less. But anyway, entrance is not immediate. And in Buddhism, there also seems to be a slight delay before arriving at [00:17:00] your final destination.
Genko: They've checked out of interactions in this realm to the moment of death from a medical standpoint to the fact that there's a fair period after that, where things are occurring and Buddhism actually addresses that period right after. Well, there's one sense in which, they say, think about it, you know, you're changing realms, so you're no longer constrained by that physical form.
It's kind of confusing though. You imagine like when a baby is born, dying is very similar to being born into a different realm. So there's a period of time, 49 days where you need to provide some assistance and encouragement to this individual so that they don't try to stay too close to this transition point, but that any residual kind of anxiety around being in that life [00:18:00] form can resolve itself. So there's a period of 49 days of chanting and incense and water.
Debra: Tell me about the water.
Genko: It's associated with purity. So water is an extremely important thing and the incense is offered because in that period of time, you need sustenance. You still kind of physically somehow connected. Uh, but you, of course you can't eat because you don't have a body. So the understanding is that you receive nourishment from incense.
So you're always going to save your best, most expensive incense for funeral offerings. So, um, yeah, so offering that incense with the intention of nourishing them and helping them and kind of saying, oh, you're okay, it's confusing. It's difficult, but keep going. Yeah. We're cheering you on .
And yeah. Yeah. And to be able to say, to somebody who's having some fear around it, what's gonna help you. I mean, what do you, what do you need to hear that will help you?
Instead of coming in and offering all sorts of, of advice and assistance to say, talk to me about how you're doing right now and let that person unfold.
However, they're going to do that. And then you can respond to what they're saying. For sure. Tell the person how much you care for them. That's really important, you know, it's not about, oh, I'm going to make you a project of mine.
If you really consider yourself a friend, you will go see them and just say, what's going on. This is really hard for me, but I care so much for you. I want to come be with you and talk to me about how you're doing. You don't have to say anything or do anything or offer some help. That's not what the person needs.
I think the most important thing that we can offer. Just a calm, fully present, being there, and it's not about me observing somebody dying it's about this person going through this and me, witnessing their transition with them, being with them for that.However, they're going to do that. And then you can respond to what [00:20:00] they're saying. For sure. Tell the person how much you care for them. That's really important, you know, it's not about, oh, I'm going to make you a project of mine.
Debra: So just people, I think it's just difficult for people to be comfortable with their own discomfort. Yes. I think that's really a lot of it. Yeah. Yeah. Their own pain around. Fear of their own death, their fear of your death, you know, their fear of the grief around your death.
Genko: Right. I think that's a big one.
____________________________________________________________
Debra: What's your opinion about sudden death versus a longer death?
Genko: You know, it's hard because people haven't had a chance to prepare and also they haven't necessarily tied themselves in knots about it either. But to me, having a little sense of warning is good.
There's a prayer we chant in Zen Buddhism say, “May I know about my approaching death, a minimum of [00:21:00] seven days before.” So like at least a week, I I'd like a week to prepare to know that this is happening. Wow. Yeah. I mean, that's very explicitly stated in it.
NARRATIVE
Debra : Although she Genko knew she was going to die sooner than she’d like, she kept living her life. And one of things she continued to do was visit her old friends.
Genko: I went to visit my college roommate, which I do every year. And it seemed this year was a really important one to make that happen. It was fabulous. Mostly you're sitting around in your pajamas talking about stuff, but, we go down to the river every day, and kind of walk around as well as we could, and then come back and rest a bit.
Debra: It sounds like it's kind of that both and thing where this is what we do every year. This is like a regular normal thing. And we're both very aware that we may not be able to do this many more years.
Genko: Right.
Debra: [00:22:00] So there's a special quality to it and an ordinary quality at the same time.
Genko: That's right.
NARRATIVE
Debra: I have to stop here and say that if we are really aware of how precarious life is. We would realize that every experience we have is both ordinary and special because how do we know it's not our last?
MUSIC
Debra: So is there anything that you would like an answer to before you die?
Genko: More and more. I understand that most questions don't have answers. And so I don't feel that urgency about, I got to figure this out. I got to find this it's more like, how do I want to spend this moment this day? In the most full and appreciative way I can.
Debra: So, do Buddhists have tombstones?
Genko: Usually in Japan, the custom is that it is similar to the Jewish custom of you have a temporary [00:24:00] marker and that gives you a year to come up with a permanent marker. Uh, so that's very common. It'd be a wooden, uh, kind of a board there with the person's posthumous name. They give new names in death so that when you call out that name, you, if you call out their name on, on, in the life plane, uh, it can be very confusing, especially for newly dead people.
It's like, what did they want me to come back? You don't want to upset them. So you give them a new name for this new world.
Debra: So if, if you had something on your tombstone, what sounds like they don't do that, but what would you want said about you?
Genko: She was there. No, I mean, seriously I showed up for my life. I would like people to say, yeah, she was always right there.
Debra: Well, that's pretty huge. I showed up. That's bigger than it [00:25:00] sounds.
Genko: Yeah. It is. Because most of the time we're often a dreamworld.
MUSIC
At my dad's Memorial service, uh, his, his and my mother's best friend stood up who's and she said the most wonderful thing about him. She said, it's hard for me not to have him around. Kind of calming things down. She said, I could see him sitting in his chair, smoking his pipe and it's the end of the world. And people are running around just screaming and yelling and upset about it. And he would just say very calmly it's all right, relax. It's not a big deal. That's just the end of the world.
I thought that was great. I thought, yeah, that's really him. That should be on his tombstone.
Debra: Really? That's a great story. How did he die?
Genko: He had a heart condition. He wasn't sick until a couple years before he died. And then [00:26:00] he ended up, the doctor said, you know, But it was congestive heart failure.
He said, there's a couple things we can do to kind of extend your life a bit. But I have to tell you your hearts, it's not in great shape. Anyway, we can do this surgery. It'll give you a little more time, but it's not going to be a miracle.
And he wanted not to do it. He felt like surgery was an extreme measure but he also respected my mother saying, I, I can't do this. I'm not ready. And it was only a year later when I said, you know, he's really suffering mom.
She finally, she said, yeah, you're right. I need to tell him that. It's okay. And my mother was at the hospital with him and she said, I'm going to go home now.
And she said, you know, if you're, if you're done struggling, I'm okay with it. It's okay. He was fine. And he died the next day. [00:27:00] Yeah. Sitting up in bed mid sentence. He was waiting for permission. Yeah. Nurse came in, he loved chatting with the nurses and because he was a pipe smoker, he would puff on the pipe. And so oftentimes he would pause mid-sentence even though he was no longer smoking pause, like he was puffing on his pipe. He was sitting up in bed, talking about when he was a soccer coach stopped mid-sentence and she, said something to him and he didn't respond. And she looked around and he was sitting there and she didn't know his heart had stopped. It was such a peaceful, smooth passing.
She called my mother and she said, what should I do? His heart just stopped. And she said, “Leave it, leave it. I'll be there in a few minutes.”
Debra: Wow. That sounds like a great way to die to me in mid-sentence. The only thing that could be better is if you were laughing.
Genko: Oh, that's a hard one. Which one last meal? We, we talked about this as in, as a family, once I said, okay, you have one food you could take with you when you die. It's like, they could put it in your cough. And, and, um, my husband said pasta and I said, [00:29:00] butter, anything with butter? I don't remember what our daughter said.
She probably was indecisive. And then, uh, our son said shrimp and chocolate and I said, that's two things he said, I know. It's like, so, so I wanted to take shrimp and chocolate.
MUSIC
Debra: So here's my Final Say for today:
The most important we can offer someone dying is the important thing we can offer to someone living: being fully present and letting them unfold. witnessing whatever is happening with them, whether that’s sorrow or joy! And sometimes it harder to be present to someone who is joyful!
And what do you want on your tombstone? I really liked what Genko said she wanted: : I was there. I showed up for my life
Well, for me, on my 16th birthday my dad gave me a gold charm that read, “Live, love, laugh.” And I’d like to think I’ve been doing that. So maybe, “She lived, she loved, she laughed.”
Instead of coming in and offering all sorts of, of advice and assistance to say, talk to me about how you're doing right now and let that person unfold.
And my death bed meal: First, really good champagne served in a champagne flute. Followed by a bunch of really nicely cooked green vegetables, asparagus, broccoli, spinach—sauteed in butter or steamed. Then: a lobster tail! Not a big one, but a fresh one. And to finish: a cup of rose petal/ geranium flower tea and a whole case of Reese's peanut butter cups. Reese’s—not any fancy designer peanut butter cups. Reese’s. And they are not a sponsor of this podcast—but they could be if they wanted to.
MUSIC
Debra: I’m Debra Jarvis, and thanks for listening to The Final Say.
Thanks again to Blue Dot Sessions for your awesome music. You guys rock.
3. What If I Told You I Was Gay?
Bob Fitzgerald
MUSIC IN
BOB:
MUSIC UP
DEBRA: I’m Debra and you’re listening to The Final Say: Conversations with People Facing Death. This is the podcast where you can get comfortable talking about death and learn some things about life from people who are dying.
In this episode we’ll explore being present and at the same time realizing that this moment may be one that someday you’ll replay over and over in your mind. We’ll also talk about tears—tears of sorrow and tears of joy. And we’ll answer the question: What is a crying rag and does everyone need one?
[MUSIC OUT]
DEBRA:
Today I’m visiting Bob and his wife Helen at their apartment in a retirement community in downtown Seattle.
DEBRA: Hello. We're a bit early. Hi. Bobster! Hi there.
DEBRA: I’ve known Bob for over 20 years. Like me, he’s an ordained minister in the United Church of Christ—the UCC. But he’s also a friend.
DEBRA: Can I will give you a hug?
BOB: And you’re Debra.
DEBRA: You're my old friend--my friend.
BOB: You're my friend. It's so good to see you again.
Bob is thinner than I’ve ever known him. He’s sitting in a recliner in the living room. Next to him on a TV tray is a plate of saltines, a box of tissues, and one of those big days-of-the-week pill boxes.
DEBRA: How's it going?
BOB: Oh, I need to tell you, I'm kinda weak, kind of slow. OK. So
it's. I don't know whether it's this early morning hour. At 10 o’clock
DEBRA: Does this feel early to you?
BOB: Oh, this is a great time. I just I find any possible reason I can think of other than the real one.
DEBRA: Yeah. And the real reason Bob feels weak is because he has lymphoma. He’s managed to beat it back for about twelve years...but it’s catching up with him. He’s in hospice now. He might have only a few months left.
DEBRA: How old are you Bob ?
BOB: 91
DEBRA: Holy cow. OK. Oh, I was off by like 20 something years. No I mean I think he's in his 70s.
BOB: No. Thank you.
DEBRA: Helen gets a big laugh over there.
BOB: And I married an older woman. We get along fine.
DEBRA: It seems like you're both kind of living your lives right now. I mean I would always say to my hospice patients that you are living, you are living, you are living and living until that moment when you exhale and you don't inhale. Yeah it's all living until you die.
BOB: Yeah, yeah. Live until you die. No, I think that's a struggle. Because I'm I'm struggling right now, see? With my weakness. This is not fun. t's very hard to realize that the things that I used to do I’m passing on to someone else and particularly Helen. That's what you do when you're this age and you're not very healthy.
DEBRA: Bob is used to being active. He's the kind of person who could make everyone in the room break out in laughter. Who, when he tells a story, he tells it with his whole body. I've watched him preach and bring an entire sanctuary to the edge of their seats. Whether he was preaching, traveling, or just doing something simple like going to the movies, Bob always brought so much energy to it. But now he mostly just moves between his recliner and his bed.
DEBRA: So how has this been for you? My coming over here and talking to you?
BOB: This has been very meaningful to me. I appreciate your doing that. I’m not sure you realize how much I think about it between our conversations.
DEBRA: Thinking. That’s something Bob can do.
BOB: It's what I call an inside job. It forces you to look inward about what's going on and pay attention to some stuff that you did off and on through the years. You tend to live in memories. So if anybody is 40 or 50 years old. Boy, this is a good time to gather some good memories going. Do some things that you're going to want to look back on and enjoy. And that's part of what I spend a lot of time doing.
DEBRA: I’ve seen this a lot. In their final days people spend a lot of time looking back at their lives. Sometimes that means regrets. I have sat with a lot of people whose final days are filled with cataloguing the things they should have said or should have done. That can be heartbreaking. But that's not Bob's story. Bob is spending his days thinking of times where he felt great love. One of those times was back in the 1980s when his son Randy was a teenager. Bob was driving him to work.
BOB: I picked him up and drove downtown to a movie theater where he was on staff. And I was driving 65 miles an hour going south. I can relive that just as clear as possible. And he asked me, “Dad what would you say. If I told you I was gay?” There was a big lull and sort of delayed the response. It was a total blank.. There was a lot of silence. There is just a lot of silence. And then. And then I said I - You're my son I love you. I saw his tears. I just joined in. And when we got to the movie theatre we got out of the car and gave each other a hug and we've been talking about it ever since. And we've been doing things together ever since. And then - see every time I tell this, I cry. And it’s the crying of joy. That's what it is. I mean I'm just reminded of the joy that, that meant that he trusted me to tell me. And I was the first one in my family he told.
This is my crying rag. This is--this is an old washcloth but It is very soft and pilly.
And I cry a lot. About all kinds of things. Both sad and happy. That’s who I
am.
DEBRA: That's great. And it looks very absorbent. ( LAUGHS )
BOB: I'm very proud of this crying rag. Well used.
DEBRA: Bob has always been an emotional guy. I knew that because we both go to the University Congregational Church in Seattle. After a really good sermon, sometimes I’d see him wiping his eyes. I’d never heard the story about his son Randy though. I know this must have been really difficult for Randy—especially back then.
BOB: I would say I didn't know any gays or lesbians. And then I quickly discovered wait a minute. There's people that you know very well they just haven't told you they're gay or lesbian. And you're just ignorant. Just sticking my head in the sand. The enemy the biggest enemy of gays and lesbians. Has been the Christian church and I was a part of the Christian church and I thought. Oh. I want to help, I want to help do something about it. So that’s what got me into PFLAG.
DEBRA: Tell us again what PFLAG stands for.
BOB: Parents and Friends of Lesbians and Gays.
DEBRA : That was a really gratifying time in your life.
BOB: It was it was very I can tell very exciting challenging. And I felt like we were right on the frontline, right on the frontline. That was early on and there was a lot to be done. And my life has been better and richer for it. So this was a good contribution to me. Made me more humane, made me more like a human being. Maybe more real. Wow. Made me more Christian, religious, spiritual.
A friend of mine who works here. Melissa. We pass little thoughts of the day back and forth to each other. One of hers she gave me recently was - “The meaning of life is to find the gift. The purpose of life is to give it away.” Whoever came up with that? Some of the experiences of my life where I’ve been with people who were all giving their gifts away and making the world better.
I was wanting to be part of something bigger and more important. And here was it was right there, right there in my own family.
MUSIC IN
DEBRA: Family comes up a lot for Bob---especially now because he’s thinking about leaving them.
BOB: I’ve got to get my crying towel out here. When someone dies, The person who dies loses themselves as well as their family. That's a double whammy. So I'm losing me.
DEBRA: Well, let me ask you about that. So what are your beliefs on what happens after death? I mean are you sure you're losing you? I mean what do you believe about that?
BOB: Over a period of my lifetime I’ve probably had a half dozen different beliefs so you’d get a different answer in different periods of my life. I think it's part of the comfort for me to leave it as a mystery that's that's to me a comfort. Part of the excitement will be to find that out. My big answer is this: be ready for a surprise.
MUSIC IN
DEBRA: Now what would bring you comfort or what brings you comfort now?
BOB: What brings me comfort in dying is that it won't be painful. I've had people tell me there's ways to make it not painful because that's a fear.
I'm also comforted by knowing that Helen and my family know I love them and that they love me. One day Helen and I were talking and she just said. “I'm going to plan to meet you in the mystery of the great beyond.” And my mouth dropped open. I thought, “Helen where did you get that?” I find that great comfort. I'm not I'm not saying it's definite. I'm not saying it's for everybody. I'm not saying it's an answer. It has an amazing power of affection.
MUSIC OUT
DEBRA: Dying can be a lonely experience. It’s similar to giving birth: you can have people all around you but ultimately you alone are doing the work. Bob and Helen can make promises to meet in the mystery of the great beyond—but for now Bob will be heading there alone. What strikes me is how at peace he seems with it all. And he can trace the reason he feels at peace now, back to a single moment from decades ago.
BOB: In 1982, Helen and I went to Europe. That taught me a lot about my place on Earth. And it was on the island of Iona. We ended up on top of this mountain. It was just a stunning beautiful day. Blue sky. Quiet. We could see the water all around the island. There was a slight breeze as I remember. There were cattle and sheep in the field. It’s a very pastoral scene. I looked around and I just was overwhelmed and overcome by, ‘I'm just standing on one little part of the earth. And it's inhabited by people all around. And we’re part of each other. And we’re part of all this creation.’ Well, I've carried that around with me ever since. And it nurtures me now. It nurtures me to face dying.
MUSIC IN
BOB: That helps me when I am confronted with the
loneliness of this experience of being alone and being unknown. It helps
me realize that this has been going on for millions of years and I’m part of that creation now. But it also has a sort of a cutting edge to it because it means I have to also say goodbye. We all join the stuff of the universe. And there we are. And that's comforting as well as challenging.
DEBRA: What’s the challenging part?
BOB: Well, I don't want to say goodbye. And that's, that's the hard part. It's an existential reality that there is a goodbye. There's no way out of that. That's what makes it existential that's what makes it sacred to me.
DEBRA: Bob doesn’t want to say goodbye, but he will. Or maybe by the time you’re hearing this, he could be gone. But for now, he’s filling his days with family and friends. And also---a lot of poetry.
BOB I read this poem by Mary Oliver. She's such a poet and such a blessing. But she's a tough woman. Now I don't know a lot about her but I gather that people think she's really hot stuff and I've learned that she's hot stuff. So--
This is a poem called “When Death Comes” by Mary Oliver. When death comes like the Hungry Bear in autumn. When death comes and takes all the bright coins from his purse to buy me. And snaps the purse shut. When death comes like the measles pox. When death comes like an iceberg between the shoulder blades. I want to step through the door (Fade out)
Debra: If there was one poem in the world that I could pick for Bob to read, it would be this one. It so perfectly captures what I think all of us want to feel at the end of our lives: that we didn’t sit it out, but were out there moving to the music and doing our own unique dance.
BOB: I want to say all my life I was a bride married to amazement. I was the bridegroom taking the world into my arms.
When it's over I don't want to wonder if I have made of my life something particular and real. I don't want to find myself sighing and frightened or full of argument. I don't want to end up simply having visited this world.
DEBRA: Isn’t that a fabulous poem?
BOB: That’s a fabulous poem. It helped me because not only am I struggling with the uncertainty and the unknown but also with all the blessings. All the good things are part of being part of alive. That means I’m still living. And while I’m still living I’m alive. Over the weekend I wrote a response. I wrote my poem.
DEBRA: I want to hear your fabulous poem now.
BOB: Her poem “When Death Comes” inspired me. So this is my response to Mary Oliver, and thank you, Mary. I want to be ready for my final pilgrimage. In the morning I have left word with all my loved ones. I love you. In my heart I want to know the peace of being forgiven and forgiving. I will remember the joys. But will have shared my tears of grief. Letting go. And saying goodbye. When all is over, I want to be ready to be surprised at what next? Surprised by God, gods, or nothing, or mysteries I never even thought of. Mostly I want to feel the peace of the final breath of my meditation and end with a thank you.
MUSIC
DEBRA: Here’s my Final Say for today. Sharing our joy is easy. Sharing our grief is hard because then we’re vulnerable. But that is what makes us fully human. That is what connects us. That is what heals us. And nothing can make us feel more vulnerable than talking about our own death—or listening to someone talk about theirs. But what a gift to both of us.
I don’t know what happens when you die. Like Bob, I want to be ready to be surprised at, “What next?” And also like Bob, I think everyone needs a crying towel. Something soft and absorbent. I want to end with a thank you like he did.
So—thank you for listening. I’m Debra and this is The Final Say.
2. Live Like You're Dying
Susan Tower
[00:22:52] Yeah I just I really value the closeness of what this sentence of death has given me--closeness to people.
MUSIC
DEBRA: I’m Debra Jarvis and you’re listening to The Final Say: Conversations with People Facing Death. This is the podcast where you can get comfortable talking about death and learn some things about living. ( how to face death which can help us understand how to face life) In this episode we’ll explore the question to hug or not to hug a person facing death; what does it mean to live like you’re dying, how to talk to your kids about death.? And the danger, not just for medical providers, but for all of us in making assumptions. We might also discuss how the mantra of this podcast might be, "Channel the baby!"
MUSIC
Susan Tower had breast cancer, had surgery, received chemo and radiation and was good to go. Five years went by and she found herself one day, on the way to the Emergency Dept. because she couldn’t breathe. It turned she had a pulmonary embolism—a blood clot in her lung. Not great, but, hey, it’s treatable and at least it wasn’t cancer.
DEBRA: So you went to the ER for a pulmonary embolism?
SUSAN: Mmhmm. That’s how I got the scans. And that's when he came and said Oh you have a pulmonary embolism we’re going to treat. Get that taken care of. And you also know about the cancer [01:03:46]
DEBRA: But she didn’t know about the cancer.
SUSAN: He didn't even know I didn’t know because it was so many places in my body so. Yeah. The lesions. But he's said cancer. I said what lesions like what are lesions. You know cancer cause I've always heard of them called mets or you know tumors. And when I heard it was so many places in my body, that it was so many places in my body that's when it really sunk in. And so my first reaction was you know cry. [01:03:21] And my second reaction was anger
DEBRA: At the doc or the circumstance?
SUSAN: Both. [01:03:28] Because he didn't really know what he was talking about but obviously he did. But he shouldn't have done that without without a proper diagnosis. But he knew.
DEBRA: And what did you say to him?
SUSAN: I didn't say anything. I didn't say a word. Sorrow, anger, fear, peace. Those were those were my steps of processing the information--from June till July.
Made me think back on this song that a country singer sings Tim McGraw. "Live like You're Dying." And that's kind of what I want to do right now is live that way because I think you appreciate things a lot more. I know for a fact that I appreciate my relationships with people.
DEBRA: I didn't know this song, so I asked Susan to tell me the lyrics.
SUSAN: That I just can't think of it right now. [What is that song?] He rode in on two point seven seconds on a bull named Fu Manchu and.
[00:09:06] He like did things that he you know he went skydiving and just did all kinds of things that he wouldn't have done before probably because of fear of dying and that fear of dying kind of it it pretty much leaves you. I mean yes it's scary because it's unknown.
[00:09:27] But it leaves you to be a little more open to things because you're thinking so why not. You know you know you're not going to do anything stupid. But what. But within reason you know. So take your chances. [Do you remember how it goes?]
DEBRA: At this point, Susan's sister grabbed her phone and began playing, "Live Like You're Dying" by Tim McGraw.
SUSAN: singing a bit, laughing
MUSIC: Tim McGraw
SUSAN: Even though you don't want to find out that news, it is a really good experience to have, to live like you're dying. You appreciate things more, you don't hold hold grudges, there's no time for that. You forgive people, people that aren't even around any more. You just let go of all that stuff because it's just not that important.
DEBRA: What’s been the hardest thing for you in all of this?
SUSAN; The hardest thing is knowing that my time is limited and that that I'm not going to have all the time in the world to spend with the people that I love. You know it's like I really wish that just more people would be here in the house I like having people in the house and I wish I'd wish I'd entertained more you know had more people over more often.
DEBRA: So when you said people you give you comfort. Tell me what it is what they say or do that gives you comfort?]
SUSAN: They say it's a feeling that I don't know if it's something that they actually say. It's just a feeling of peacefulness that they express and love. You know there's more hugging. Those are that's really nice. I would have hugged a lot more to hugs are fun and they make you feel good. My sister is a big hugger and we didn't really grow up in a huggy family.
DEBRA: Her sister pointed that they became much more huggy once they started losing family members.
[00:31:05] Yeah. Because then you realize if I am I'm not going to be able to hug you maybe someday.
DEBRA: Yeah you could keep that in your mind. You're like having an argument with your husband or something. Like, I may not be able to hug you. I mean it would just wipe everything out. You’d go, what is this stupid thing about loading the dishwasher?
SUSAN: Yeah. And you get a peaceful feeling from a hug. A hug really can ground you.
DEBRA: Susan had always been a caregiver for other people, so it was a hard for her to be on the receiving end.
SUSAN: I had to guess I I don't like having to ask people to get me things or to do things for me or bring me places or ideas. I hate it I just hate it. But then if the shoe is on the other foot I would be more than happy to do that for somebody else just because that's just makes me feel good.
DEBRA: You know so I had surgery and chemo too. And like you I hated that being so dependent. And what was helpful to me was thinking about babies and you know they come out in a they're pretty ugly. (laughter) I don't care what you say. They're pretty ugly
[00:34:21] People who are dying are unattractive according to our cultural standards right. And yet, here’s this totally dependent being, you love them so much you would die for them. And they just happily accept all of your love and your care. And I think, okay, think how much pleasure that baby gives the caregiver. If I could be like that baby and just accept graciously and gracefully, it would be such a gift to someone who’s caring for me.
SUSAN: Yeah.
DEBRA: Instead of being argumentative and, you know, feisty and, whew. So I would like, okay, I’m going to channel the baby. (Both laugh)
SUSAN: Channel the baby. I’m gonna to have to do that. I’m going to have to channel the baby.
DEBRA: Yeah! (Both laugh) And realizing, like, wow! It’s such a gift to care for a baby. It’s a wonderful thing.
SUSAN: Yeah.
DEBRA: So, tell me about your grandkids. I mean, do they know how sick you are, and can you talk about it?
SUSAN: No, they don’t understand that I am dying.
DEBRA: If they ask you questions, like, “Grandma, are you gonna die?”
SUSAN: I will tell them the truth. But I’ll tell it to them in a way that will be appropriate for their age.
DEBRA: So, say I’m nine years old, and I ask you, “Grandma, are you gonna die?”
SUSAN: And I would say, “Yes, someday. We all are, you know. We are all going to die someday. And I don’t know when that’s going to be, but because you’ve seen me be sick so much, it might be a little sooner than I was planning. But we still have time.”
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DEBRA: I want to go back to your answer to your granddaughter, which was lovely and beautiful, and so deeply honest. And I just want to affirm that the way that you answered. If you can be matter of fact about things, and not hesitate, and use normal language, it brings a sense of ease to the person that you’re talking to.
SUSAN: Right. Yeah. It’s not so scary. ’Cause they’re thinking, “Well, what’s that mean?” if you say something other than what it really is.
DEBRA: Right.
SUSAN: No, my kids, okay, so I think of course they feel very sad, and don’t want to lose me. But I feel a comfort and support from all of ’em. That’s one thing we love and enjoy doing as a family, is playing games. We all get together as often as possible, to get together and have game night. Yeah, we do fun things like that. And we all have our special colored marbles we like, and –
DEBRA: Did you ever lose your marbles? (Both laugh) I am so sorry.
SUSAN: I have!
DEBRA: I just like--I tried to hold it in.
SUSAN: (Continues laughing)
DEBRA: Susan had a lousy experience in the emergency department when that physician used medical language, and then assumed she knew about her cancer. Note to self: Never assume. This is good advice, not just for medical providers, but for all of us, right? Have you ever asked a woman when she is due, only to find out she is not pregnant? Yeah, me too. So, the emergency department experience was not so good for Susan, but her experience with her palliative care physician was totally different. For one thing, get this, her doctor had the impossibly perfect name of Hope.
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SUSAN: Walking into her office, talking with the nurse, and getting all the paperwork done, and the nitty-gritty stuff. And then Hope came in. And she just walked in and sat down. She’s so, you know, casual, comfort. Looked at her computer, just started talking to me right away about everything and saying, you know, really, like, I’ve noticed that you’ve gone through a lot lately. She’s a very sweet, compassionate person. And we didn’t look at scans. We didn’t talk about anything really technical. We talked about pain management because I’ve been in a lot of pain. And that’s kinda not been handled very well. So that’s what we’re looking at right now, is pain management. And that’s what she’s gonna probably be able to help me with better as time progresses on.
So, treatable, we’ll try and keep you here as long as possible, is what means to me. And not curable means that you’re not gonna be here forever. But that’s okay because nobody is.
I just felt really comforted by her, knowing that she’s gonna be there for me when I need her to be there for me.
I have a lot of big things happening to me lately. (Laughs) So, I’m thinking, “What are you telling me, God? ’Cause it’s just . . .” And I think my relationship with God has . . . I appreciate that a lot more, too.
DEBRA: Well, tell me about that. So what were you raised to believe, and where are you with all that now?
SUSAN: I was raised Catholic, but I kind of got away from that because of a lot of the guilt that (laughs) the Catholic religion does. I don’t know if they do any more, but back when I was younger, they did. It was more of a guilt kind of a thing. Or, you know, a threatening thing over your head. Hell and damnation, the ground’s going to open up underneath you if you tell a lie. No, I just feel myself a Christian. This has drawn me closer to God. And maybe that’s the plan. I just feel like I talk to him more. And I find more peace from him.
DEBRA: Well, someone’s listening to this podcast, they’re listening to this fascinating conversation around dying and death. And maybe they have a relative who’s dying, but they’re terrified to go visit.
SUSAN: Mmm-hmm.
DEBRA: What would you want them to know?
SUSAN: I would say, don’t be afraid to talk to them about it because you may find out that it brings you some peace, that you won’t feel – you’ll regret not talking to them about it. You will regret not seeing them or avoiding them because you can’t get that time back with that person. And most people that I know of, that know that they are dying, are very at peace with it, once they’ve come to terms with it. Everybody has a different amount of time that it takes to come to that term. But once you come to terms with it, it’s a peaceful feeling. And even though, yes, it still does make you sad and you’re a little afraid of the unknown, but people should be able to talk to you about that. It’s sad to say don’t – it makes me sad that somebody’s afraid to talk to me about it. So, if they want to make that person happy, they want to bring some light into that person’s end of their life, then open up and talk about it. And ask the questions you’re afraid to ask. Because if you don’t, you’ll never know the answer.
DEBRA: And I guess my last question, what’s left that you would really like to do? I mean, besides, like, date George Clooney. (Both laugh) I mean things that are possible.
SUSAN: Right. Oh, my gosh. I’d love to go somewhere warm and tropical, with the whole family.
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DEBRA: Well, I think Susan pretty much said it all. So, my final say for today is really pretty short, and it’s for those of us who have trouble accepting help from others. Our new motto is, “Channel the Baby!” And to paraphrase Tim McGraw, I hope we can all “love deeper, speak sweeter, and give forgiveness we’ve been denying.” And I hope we all get the chance to live like we are dying.
I am Debra Jarvis, and thanks for listening to The Final Say.
Special thanks to Danna for helping me with the cover art. And to Blue Dot Sessions for your awesome music. You guys rock.
1. Who Gets the Final Say on the Final Visit?
Hal Pelton
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HAL: Susan mentioned she was quite impressed by the ability of some of the people sending cards, saying nice things, and those are really nice sentiments. It’s a real effort to put together something like that, even a sentence or two, even if it’s just a birthday. How do you say something nice (chuckle) for a birthday let alone, "I’m sorry you’re dying"? (Chuckle) "Better you than me," I guess. (Chuckle) "Oh, you’re gonna die."
DEBRA JARVIS: I am Debra Jarvis and you’re listening to The Final Say: Conversations With People Facing Death. I’ve been a hospital and a hospice chaplain for over 30 years and so I’ve had lots of these amazing conversations. And now you get to listen in, because over the course of this podcast, I’ll talk with people who are facing their own deaths – and, you know, not in that abstract way that we all are facing our death. These are people who know they have only months, or maybe even weeks left to live. We’ll have a conversation about the past, their present experience, and what, if anything, lies ahead.
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DEBRA: I’ve known Hal Pelton for sixteen years. He was the father of my friend Susan. I just loved him because you could sidle up to him at a party and right away have a down-to-earth conversation. His college students loved him too. He helped them see familiar things, in a new way.
HAL: Actually, one of the most common comments I had from former geology students was that it made them appreciate scenery more: Why there were mountains and streams and rivers and earthquakes and so forth.
DEBRA: He stayed close to his family and his old friends.
HAL: For quite a few years after I retired, I would get together with people from Seattle Central Friday mornings for breakfast. The ROMEOS, Retired Old Men Eating Out. (Debra laughs) I have an outstandingly good support group. You know, as you say, loving family, all the cliché kind of things, but it’s true.
DEBRA: Hal was a hard-working volunteer with the Washington Trails Association. So he was out there clearing brush, and moving rocks, and digging out trails. But he was always super modest about it.
HAL: I think the Washington Trails people kinda liked to have me around. An unspoken, “If he can do it, anybody can do it.” (Debra laughs)
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DEBRA: His 90th birthday party was crammed with people. His two daughters made about twenty different kinds of Bundt cakes, each one in a different Bundt pan. Yeah, seriously. Each one in a different pan. They wanted this party to be special and it was.
[MUSIC]
A few months later, Hal was diagnosed with Stage IV metastatic liver cancer. I knew everyone would be heartbroken. And I just knew there would be a line out the door of people wanting to see Hal for one last visit. And I was sure that Hal would want to say goodbye to each one of them.
HAL: I tend to put off having people visit. I can’t help feeling that everybody who comes is sort of coming to say good-bye. Don’t really need that.
DEBRA: Wait—what?
HAL: And I’ve been pretty good about avoiding unpleasantries and unpleasant things in my life. I don’t really feel obliged to comfort other people.
DEBRA: Right, right.
HAL: I don’t think whatever good I could do them, that would not be certain at all—not worth the effort. (Chuckle)
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DEBRA: So, here’s the question I mentioned earlier: Who gets the final say on final visits? I mean, you’d think it would be the dying person, right? But what if there’s someone who needs just one last visit? That’s the question. And how did Hal come to this decision?
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HAL: People who visit, I think, may just go away feeling sad.
DEBRA: Yeah! And that’s okay!
HAL: Well, it’s okay except why bring that on them when they could just wait until it’s over and say, “Oh, I wish I’d visited him. Maybe it’s just as well he didn’t let me come.”
DEBRA: Oh, Hal. So, you’re saying better to have not loved at all than lost.
HAL: (Chuckles) Well . . .
DEBRA: That’s what you’re saying. (Both laugh) I’m saying better to be with you and feel the grief than not to have visited you at all.
Do you think it’s just like a primal need in people to say goodbye or have one last visit if they know that somebody is really sick and is going to die soon?
HAL: N-n-no. (Chuckles) You’re touching just little bit on the spiritual aspects there.
DEBRA: Well, no, I think this is the existential aspect. Here’s what I think is hard for most people about visiting somebody they know is terminally ill: Your death throws my inevitable death in my face.
HAL: Oh.
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DEBRA: So, what about this, Hal? So, you were taking about how you’ve effectively managed to avoid unpleasant things in life. Do you think it’s possible to just kind of hold both those things, the unpleasant thing being—Okay, you’re going to die from this. But the pleasant thing being, here’s a person visiting you that loves you, that you’re having this great interaction, and at the same time we know that you’re going to die from this.
HAL: I guess in a way I consider it too hard, and a number of people have expressed a wish to visit. And to that extent I suppose it’s my selfishness that, uh . . .
DEBRA: Is it that you want to avoid the pain of that or the grief of that or thinking about your death or all of those?
HAL: Yes, yes, all of the above. Anybody who comes to visit clearly is coming, in a pretty straightforward sense, for the last time. Boy . . . I’m not sure I need a load of that dumped on me.
DEBRA: A load of goodbyes?
HAL: Yes.
DEBRA: Yeah.
HAL: Yes.
DEBRA: Okay, so he’s, he’s right—it’s hard to hold those two things together. Can you hold joy and grief at the same time? So, I decided to ask him a slightly easier question.
DEBRA: What do you think—how does it work? How do you get out of your body? I mean, I don’t know, but I’m wondering if you’ve thought about that, or . . .
HAL: Well, the science kind of relieves me of worrying about that because there is nothing there. Between geology and I taught a few environment courses. And one of the obvious things is that there is continual and very effective recycling of things. You know, ashes to ashes and dust to dust, I suppose. And there’s a finite amount of material. You can’t be stashing it away some place and not use up the available material. You’d have to have two almost totally separated parts of your brain to accept traditional religion vs a lack of religion.
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DEBRA: What are you choosing to do with your body after you die? Cremation? Burial?
HAL: Cremation.
DEBRA: Cremation.
HAL: Partly to (chuckle), partly I suppose to avoid taking up space. (chuckle)
DEBRA: Mmm-hmm. What are we doing to do with your ashes?
HAL: I hadn’t gotten specific about that.
What I’ve done with Sharon’s ashes is take them to places we visited here in the Cascades and the Olympics, (voice cracks) the ocean, Alps, Himalayas.
The porter who was along with me chose to kind of enter into the spirit, in a sense. And what he did was give up smoking. (Chuckle) He lit a cigarette, puffed it a few times, snuffed it out on a cairn we had built, took the last couple of cigarettes in his package, stuffed them into a crevice in the cairn, and said, “I quit smoking.”
DEBRA: Wow
HAL: It may have lasted a day. It may have lasted a week. But (chuckle) at least, he, in a sense, entered into the spirit of leaving something behind.
DEBRA: Nice. That could be a tradition. People, you know, quit at least one bad habit at every funeral or burial.
HAL: (Chuckle)
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DEBRA: Holy cow. We’ve been talking about really kind of painful things, right? How has it been for you to just sit here and talk about all this stuff?
HAL: I can’t think of anybody I’d rather sit and talk to about this sort of thing. I would have real difficulty of doing this with family. Again, my avoidance of unpleasant things. (Chuckle) So I dumped the unpleasantness on you. (Debra laughs) But, but (chuckle) that’s your profession.
DEBRA: But I asked for it.
HAL: That’s your job. (Chuckle)
DEBRA: And here’s the thing, I don’t find it unpleasant.
HAL: Ah.
DEBRA: It doesn’t feel unpleasant to me. I just think, Wow! Here’s a guy who’s real and authentic and, at least sitting here in your daughter’s closet, (both laugh) willing to explore really hard subjects, after telling me a couple times: “I avoid unpleasantries.” (Both laugh)
HAL: Ahh.
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DEBRA: Okay, here’s what you need to know for this last bit of conversation: Every year at Christmas, Hal sent out an eight-and-a-half by eleven print with twelve stunning photos on it, one for each month. And, you know, they were pictures of places he visited, and things he did, and people he met. We always looked forward to getting it. And the other thing you should know is that even though Hal was very clear he didn’t want any final farewells, I did slip in my own goodbye and thank you
DEBRA: Gosh, I’ve just loved having you around. You’ve been a role model (choking up) for my husband and I. When we get your calendar every year, you know, your Christmas card with all the months? We say, “We want to be like Hal and have all something going on every month where we’re doing something we enjoy and something that gives back to the community.” So . . .
HAL: Well, in a way that’s been kind of an ego trip. (Chuckle) (Debra sniffs) “Oh, I haven’t done anything interesting this month, so I’ve gotta get out there and do something.” That’s kind fun, a fun thing to do. Well, if it has inspired anybody to go do something interesting or fun or useful or helpful . . .
DEBRA: That’s one of things I love about you. That you’re just out there living your life and that you walk with such joy.
HAL: . . . Yeah.
DEBRA: There was one last Christmas card. Hal put it together just before he died, and his family finished it up and sent it out. It has the twelve squares on it, and there’s Hal’s photos from January to July. And the final photo in August is his son John, holding this beautiful wooden box he’s made, which contains the mingled ashes of Hal and his wife Sharon. And the rest of the months? September, October, November, December? They are blank—just as Hal would have wanted.
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DEBRA: Here’s my Final Say for today: What if you want to visit? My rule is you can ask twice. If they still don’t want a visit after you’ve asked twice, then you’re done. Write a really nice card.
What do you write in those cards to people who are not going to get well? Well, the first thing is, don’t write, “Get well soon!” because that’s not going to happen. The most important thing is to let someone know that they’re not forgotten. So, write something simple like, “I was just thinking about you and how much you like . . .” and then fill in the blank. Or start a sentence with, “You’re one of my favorite people because . . .” and then finish the sentence.
Be sincere. Be positive. Be uplifting. Be short and sweet.
People also like to hear that they’ve made a difference in the world, you know, even a small difference. And that’s why I told Hal that he was a role model for my husband and me. So, if you write something like, “You showed me the importance of . . .” or “Without you I would never have known . . .” If you write something like that, then they’ll know they made a difference.
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DEBRA: I’m Debra Jarvis, and thanks for listening to The Final Say.
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