Takeaways & Reflections | Life, Death, & Legacy

 

SHOW NOTES SUMMARY:

Talking about end-of-life is never easy. And, receiving a terminal diagnosis (with a prognosis full of unknowns), is nowhere near easy either.

I reflect on what my guests, Dr. Chris Kerr, author of “Death Is But a Dream,” TEDx Speaker, and researcher of end-of-life experiences of terminal patients and 17-year metastatic breast cancer survivor, Anne Jacobs, shared with and taught me.

I have flipped how I feel about end-of-life experience and what I hope my end-of-days are like based on my training as an End-of-Life Doula and my conversation with Dr. Kerr.

Anne brings so much hope and sage advice for those diagnosed, caregivers, and the rest of us – I hope you listen. Live for today; it’s all you have guaranteed!

Resources:

 

A Conversation About The End of Life

Today I’m going to be sharing my takeaways and reflections from episodes 40 and 41. Episode 40 was with Dr. Christopher Kerr, who spoke about the end of life experience from his book in research that is written about in his book, death is but a dream. And also talk about Episode 41 with my guest Anne Jacobs who has been living with metastatic breast cancer for 17 incredible years. When I interviewed Dr. Kerr it was back in mid February, I was just about to start an end of life doula training program. And so I was excited to hear his perspective. In advance of starting that training. I also had purchased his book and had started reading it and after going through the program, and the episode went live on March 30th, which was dedicated to my father actually, because March 31, was his death versary. I call it and it was just very timely, the end of life training. Dr. Kerr on my podcast, the 34th year, my dad has been gone. It was just a very timely conversation for me. And I feel like the past two years have been full of full circle moments, really, ever since I became a certified grief recovery specialist.

And the other trainings I’ve taken since which you know, really everything at one thing leads to the next thing to the next thing to the next thing. And I think when we start to embark on really healing ourselves deeply. We see opportunity everywhere. And when we are consumed emotionally, it’s really difficult to see what is possible. We don’t really want to think futuristic, we don’t want to create goals for ourselves. Because it feels arbitrary. It feels kind of meaningless. Because when we’ve experienced so much grief in our lives, trying to find that meaning is really what many of us do. Which brings me to the conversation I had with Dr. Kerr and how towards the end of life. If we are well, I’ll say it if we are lucky enough to have the gift of time with loved ones before we pass and they with us. It is an opportunity to find meaning in the years that we’ve lived up to that moment. And based on Dr. Cruz research, that is what happens for many people who he’s done this research with. And but he talks about in the context of an environment that nurtures that opportunity, and so he talked a lot about the medicalization of end of life experience and, you know, said that majority of Americans do not want to die in an institution. But yet most do. He said too, you know, we get to this place of, of you dealt with a terminal illness, you can get to this place of medical purgatory, where you get released from the hospital and get sent home with to be with loved ones, and caretakers, and all the rest of it, when there’s nothing more that can be done, but then you’re kind of in limbo, you’re left to figure it out.

About The End of Life Doula Experience

And now, what’s missing for so many patients and family members? Is the education. They don’t know what to expect. family doesn’t know what to expect? What does dying look like? What are the signs, what are the symptoms? What might he or she exhibit, as in terms of personality? Will we be able to speak to them or talk to? Will they be able to talk to us all these things that kind of get? I don’t know, like, there’s just this lack of conversation around and honesty, to be honest, from what Dr. Kerr has said, it’s this lack of honesty, on the medical side of the process of dying, and just terminal illness itself. It’s this inability to be honest, you know, because a doctor’s goal is to exhaust all options. And, but what that is doing in the process is denying people of their own agency of what they want to do, or what they would, you know, maybe they would decide differently if they had the information if they had more information. And I don’t know about you, but what I’ve learned about myself is I need all the information, and then I need to make a decision, give me all the information and then I’ll decide. And there is no greater advocate for that than you, yourself. And hopefully, we all get to that end stage of our life. And we have that choice we are we have that option. And we have the ability to communicate that and if we don’t, that we have it in writing so that our loved ones can for us.

And so I used to think that I just wanted to go quick, and I didn’t want to really know what hit me and you know, or in my sleep right like this, you know, sleeping beauty kind of scenario. And I go to sleep and I don’t wake up and it’s a sleep for the rest of my life thing, you know, beautiful thing. But what I’ve come to realize through my end of life doula training, and also this interview and research through with Dr. Kerr, who that he shared with me is that end of life can really be one of the most beautiful experiences you ever have. It allows you the opportunity to complete, what is emotionally incomplete for yourself at the end of life is how I interpreted it, how it was described. And we very much do that in grief recovery. And what happens at the end of life with many of the people in this research, which was confirmed by the research is that loved ones who had passed come to visit those dying. And that can bring great comfort for them. And it can bring great comfort for the family as well. But there’s more to the end of life experience that I can speak to as an end of life doula in that. We each have the power to communicate what we desire at end of life. Now again, whether we’re given that option or not, is not our choice to make in my asking for a terminal illness so I can have this experience.

Leaving a Legacy Project

But do I want this kind of experience for myself and for my loved ones because I understand the impact that it has positively on the bereaved? Absolutely. So with end of life, we have a sense of agency If we’re able to communicate that, and here’s the thing, even before you get to the point where you’re not able to communicate that you can communicate that you can put it in writing, what do you want done with your body after you pass? Do you want your body washed, I had never even considered that before my end of life doula class, but you can have your loved ones wash your body. And it doesn’t need to be your whole body. It can just be your feet, it can just be your hands, they could wash your hair. You know, it doesn’t have to be it can be whatever you want it to be. What kind of legacy do you want to leave? What you know, and we can do something what’s called a legacy project, where I as a doula can come in, and we can create something that is left behind. But in your honor, and in a way that where you feel like you’ve given some value to your loved ones, that your life is giving some meaning. Some people might have someone dictate and write out there thoughts. Maybe as someone who’s in the process of dying, you want to write a letter to all your grandchildren. That can be a legacy project.

Perhaps there’s a collection of things that you’ve collected over the years and you want something like a collage made, or you can involve the family in legacy projects as well. There was a beautiful story that was illustrated about a woman who she was a very, she was very well known in the creative and in the arts industry. I believe she like painted pianos. I’m not even sure she just very artsy fartsy kind of kind of Lady and well known. And she I think she designed costumes to or, you know, something like that. And her loved ones and friends. She had actually, when she was in the process of dying, someone had given her a chandelier that was made out of Barbie dolls. But all the Barbie dolls had the same swimsuit. You know, like those synchronized swimmers. They were it was like they were in a shape of synchronized swimmers as the chandelier that was made in, you know, with these Barbie dolls, which is, uh, wouldn’t it be neat? If we could if I could do that, if we could coordinate this human synchronized swimming, you know, in, you know, event or whatever. And her loved ones and her family did this very thing that was on her heart that she wanted that she thought would be the neatest thing. As a creative person she wanted, she would have loved to have coordinated this and she would have been the one coordinating it. And she did. You know, before they knew that she she didn’t know if she was actually going to live to see it to fruition. And so every idea she had was documented. And they came up with the swimsuit, the swimwear for everybody. And they did this beautiful choreographed, synchronized swimming, impromptu thing in the middle of the city where, you know, they had a huge where the huge fountain was.

And it was the most beautiful video and I’m actually I’ll put it in the show notes, because this is the best example of a legacy project that was shared in our training. Now, it doesn’t have to be that elaborate or anything like that. But it was just, it was just beautiful. And so as the person dying, you can create yet one last piece of legacy and you can involve your family and it can be a very beautiful thing and experience. And also to as an end of life doula. We are the buffer. We are the bridge between the hospice care team and the family and the one that’s sick, and bring great comfort for the spiritual and emotional aspect of the person who’s dying. Which, you know, the hospice care team, the wonderful job that they do, their focus is on the physical person, you know, on the physical body, keeping the physical body comfortable, but what about the spiritual and the emotional, right? that and so that’s where the end of life doulas come in. As Dr. Kerr said in the interview, he said we treat dying as a medical problem to address or solve. When it’s really about a closing of a life. It’s not about a failing body part. And he went on to say that people don’t die in parts, they die in totality. And totality of life is defined mostly by relationships. And so medicine takes something that is ultimately a human experience, and then sterilizes it into something it isn’t? And I couldn’t help but think about my own dad’s experience of, you know, being in the nursing home, and dying in the nursing home at age 44. And how this environment just does not nurture and foster connection. And yeah, it just very much sterilizes the process of dying. And I just couldn’t help but think that, oh, my dad would have had this opportunity, if only he would have been able to experience a good death, and have some say in that for himself.

Telling the Emotional Truth

But I think so often, too, as the person dying, we don’t want to burden anybody. A lot of us are afraid to burden people. And so even in grief, we do this, we don’t want to say how we really feel because we feel like then we’re burdening someone else with our emotions. And how we live is how we die. And so if we have that mentality of not being able to be honest about how we feel, and we when we’re living, we’re going to go out that way too. But wouldn’t it be such a beautiful experience, a more liberating and freeing experience, to be able to live the rest of your days and live out your days? With the ability to be honest, to tell the emotional truth about what you desire, what you feel, what you need, and how you want to experience your last days like that. That’s your last test. That’s like your last that’s really the last opportunity you have to don’t even know what the word is. Yeah, like fully express your sense of agency, I suppose. So anyway, this conversation just ends the conversation and the end of life doula training just really opened my eyes really flipped my idea of what I want my end of days to look like.

I just really hope that one day, however, it happens that I do have this opportunity, just like described by Dr. Kerr in his episode and in his book to have this beautiful experience with my loved ones where they to feel some sort of Completion with my passing that’s really what I’m, I took away from my training and from this episode, so I hope you listen to it because if you know someone who is in the process of going through a terminal illness or you yourself are or if you’re like me and you know are healthy and but you know just thought to like you just want to go quick, you don’t want to know, I understand the all the impact that has on loved ones left behind. And dying can be a beautiful thing. And that’s what this has shown me Dr. Kerr episode, the training that I had, it can be a life affirming experience. As Dr. Kerr said, he said dying is it’s like post traumatic growth spiritually and psychologically. He said to what’s good for the patient is good for the loved ones. And so, I’ve definitely been impacted by his work. And by the education that I received in my end of life doula training for sure. So I hope you check that episode out and even Dr. Kerr’s book death is but a dream.

Live Today To The Fullest & Have Hope

Moving on to my conversation in Episode 41 with Anne Jacobs. First of all, I knew I was gonna cry during the episode. And she had such sage advice for whether you’re someone who has been diagnosed with cancer or you know someone who has or you’re healthy, you cannot listen to her story, and not reflect on your own life, or on the life of someone you love. And she said, you know, before cancer, she took for granted that she would wake up the next morning. And yet, now there’s this, you know, for the past 17 years, actually, it’s been 18, but 17 years with metastatic breast cancer. She’s had this unwanted houseguest that she can’t ignore. And she even said, and when I do for too long, it doesn’t serve me. Well. She said. And, you know, so you can try and put it out of your mind. But every morning is a reminder, like, Oh, yeah, you know, it’s like, it’s almost like when my husband, he has back pain, he’s Oh, he’s had chronic back pain. And, you know, when he’s laying down, he doesn’t feel it, he feels perfectly fine. He feels no pain when he’s laying down. Fortunately for him, you know, there, I know, there’s, and he’s aware of this. There’s many people with back pain that can’t sleep because they have such horrible pain, no matter which way they lay. And although he does get up at least once or twice, maybe sometimes even three times during the night. So it’s not like he’s getting the best sleep. But he’s not getting up because he’s in back pain. Is my point. But you know, even he has said, you know, he goes to sleep. Or even if he lays down for a nap, or is laying down he can he there’s a moment where he forgets until he goes to get up. Oh, yeah, that’s right. This is my reality. And I’m not comparing back pain to cancer. But I’m comparing this idea of how it’s easy for him to forget. But also for her to who’s even dealt with this for 17 years.

So when she’s getting comfortable, when she’s feeling good for maybe several days, maybe even a week or two, she can kind of forget, you know what she’s really living with. But she is quickly reminded that at any time, the shoe can drop. And that’s what she shared. It’s like, I’m just waiting for the other shoe to drop. I’m waiting for that day to come or somewhere. I’m told, there’s nothing more we can do. This treatment isn’t doing what it what it should be. There are no other treatments, there are no other options. And she’s fully aware that that day is going to come she just doesn’t know when. And it’s one thing to experience that I think for three months, six months a year, maybe even five or six years, but 17 years of her life has been spent fighting this thing in her body that this unwanted houseguest that isn’t going anywhere. She will die of metastatic breast cancer. And she knows this. She just doesn’t know when. And so what better teacher for all of us to live for today, to live today to the fullest. To not wait around to write that book or to ask that person out or to make that phone call or to make amends or do something on your bucket list.

Try out for the play that you’ve always wanted to do bungee jump skydive send joy to other people. I mean, there’s just so many ways that we can live each day to the fullest it doesn’t have to be grand. It doesn’t have to be big it can be just simply really stewing in gratitude for today. And so she gave so much hope in her message to not only people who may just be diagnosed with metastatic breast cancer or people who’ve been diagnosed with a terminal illness. But also for the rest of us who are healthy. That, you know, it doesn’t need to take like, why does it need to take a terminal diagnosis for us to wake up to our own lives? Why does it take this catastrophic, life changing event that changes the trajectory of your the rest of your life, you know, she can’t plan trips. She can’t plan for three months from now. She can’t plan period. She can. But she can’t, you know, it’s like this double edged sword, it’s, you don’t know if it’s going to come to fruition, you don’t know how you’re going to feel you’re not going to buy tickets, you’re not going to buy plane tickets, you’re not going to book a hotel, you’re not going to do all these things you would normally do because you don’t know how you’re going to feel. Right?

Bringing Story and Knowledge Through Grieving Voices Podcast

So I held so much love in my heart for her during our recording, I still do. In fact, I’m going to have her back on a regular basis to check in with her. We plan to record every few months, I think five months or so four months, something like that for however long I don’t know, I don’t know how long, right? It could be for the next 10 years, God willing, I’m still podcasting. 10 years from now. If I have grieving voices exist 10 years from now. Hallelujah, that I mean, I can’t even imagine, I can’t imagine that. But how wonderful that would be all the conversations I can have, that I get the opportunity to have. In that time, like, it just feels my heart to even think about it. I’m actually approaching my 50th episode, it feels like next week, but it’s really what is it nine episodes from now. So nine weeks from now, but I actually have episodes into ready, you know, to edit and stuff into July and August already. So I’m excited to hit that milestone of 50 episodes because a lot of people don’t who start podcasting many people don’t. So I’m very proud of this platform that I’ve been nurturing and the guests that bless my presence, and yours with their stories. I just feel so blessed to be able to do this and to bring and story to you to bring the knowledge of Dr. Kerr and, and everybody else who comes on my podcast. It’s with great intention that I have these conversations. And it’s to bring hope. It’s to bring some introspection, to your life to your day.

And probably some gratitude to right that, you know, there’s no higher hierarchy of grief, there’s no story that’s, or no one’s grief is better, or, you know, more important or more valid than anybody else’s. But I think as humans, we naturally when we hear someone’s story, and we think we might think to ourselves now actually, someone just said this to me not long ago, you know, hearing that this other person’s story made me think, oh, man, yeah, my life isn’t so bad. You know, we don’t want to minimize our grief. We don’t want to minimize what we’ve gone through. So if you’re listening to this, please don’t do that. But if it brings some perspective to you, and that’s a good thing. You know, if you’re willing to look at it that way. It can really bring some healing for you to think about you know, I think is really just thinking about other people, right? I actually told this to someone too, not that long ago, the fastest way to get out of your own stuff in your own head and in your heart is to focus on other people focus on helping other people. So anyway, I got off on a tangent there but and story just really touched me in in a really profound way. And I mean, so much. So like I said, I she’s going to be an ongoing guest the first one ever and I look forward to catching up with her again in a few months, and bring in her her update to all of you. And I think it’s a wonderful thing to give her this space to do so to share her a piece of her journey with others, for the sake of helping others, she’s helping others when she does that.

And I know she knows this. And also too, when I’m, you know, going through the end of life doula program, and just understanding the importance of like, you know, of legacy, and what do we want to leave behind? What do we want people to say about us, once we make our exit, and I just really want people to hear from an over and over and over. And if I can give something of that’s really a labor of love for me, and also something that is meaningful for her to her family someday, then, and I can coordinate that and orchestrate that and put that together, like, you know, in the form of this podcast, then I I’m all for it. I’m here for it. And so I presented her the idea and she loved it, she was honored to be asked, and it is my honor to have her as an ongoing guest. So look forward to seeing more of on the podcast coming up. But her story is definitely a road less traveled. There aren’t many people who have lived as long as she has lived with metastatic breast cancer. And on top of that, with her two, triple positive metastatic breast cancer, which is even like, I was kind of doing my own research and things and it seems to be one of the most it is the most aggressive is triple positive. And she’s managed to, through her own hope for tomorrow, and faith in the treatments and her positivity like this, she exudes positivity, if you listen to the episode, you just you feel it when you listen to her voice. I am not surprised, I guess when I when now that I’ve gotten to know her and I hear her story, and I hear her talk. And, you know, through email correspondence and things, it’s not surprising to me that she’s made, you know, made it 17 years with this beast, you know, in her body.

Grief Doesn’t Stop

And she said, you know, in the beginning, it’s like, you feel like you’re dropped into a foreign country with no map and you don’t know the language. And I think that’s true for grief in general. In an with an a diagnosis such as hers, I, you know, it’s just like this, it feels like such heavy grief to me to all these losses that she described, you know, being a young mother with this diagnosis, and you know, and even then, like not, when you don’t know, you don’t know, like, you don’t know what you don’t know. And so, she didn’t know how much time she would have in the beginning. And she didn’t know she’d be here 17 years later. And so, you know, it took her some time to even probably embrace the idea that she could be present in her children’s lives and in with her, you know, significant other spouse for this long. You know, it’s like, I would almost imagine, like, you’d be even afraid to entertain that idea as to not get, you know, depressed and disappointed. And, and it’s like, how do you stop that committee in your head, like, you know, from going off the rails and telling you, you’re ridiculous for thinking you could live that long. And you know, I just feel all the feelings. When I think about if it were me in that position, and I just, it just felt really, it feels really heavy. To me, it feels like a really heavy experience, but she is just so fully embraced this deck of cards, she has been dealt and with such grace and probably not getting it perfect all the time.

You know, I mean, how can you there’s no manual for you know how to survive metastatic breast cancer for 17 years. And you know what, I have every confidence though, if there was one, she could write it, you know? Maybe I’ll have to suggest that to her a manual for living with metastatic breast cancer. There you go. And if you’re listening to this, there’s your book idea. But yeah, I just really, I really loved my conversation with her, I really hope you listen to it. And it’s for everybody. It’s not just for people in her situation or a caregiver, or it’s there’s something for everyone. And there’s one thing she said to that I just want to end with, if you allow yourself to feel deeply, you interact with others at a different level. And that is so true. And I talk about this a lot in my social posts, and in blog posts and things like that, it’s grave just really has a way of disconnecting or disconnecting us, from others and ourselves. And until we allow ourselves, to feel deeply and to really dig into all of those feelings. That disconnect only gets wider and wider. And so the road back to yourself, can feel really lavoris, then that was my experience. I’m not saying that is for everybody. But I think the longer we allow that gap, too. You know, or the more time that we allow to pass and that, the more the wider, we allow that gap to get of that disconnect from ourselves and our grief, and to other people. It’s just really that much harder to find our way back to ourselves again, because what happens is in that time, you have more losses. You just have more loss. Because grief doesn’t stop. Because you lay down in bed at the end of the day.

You know, tomorrow, something else might happen. You might have another loss or grief experience. He could gotcha, you know, lost your job in another lockdown. Kids have to home school again. You get a diagnosis, someone you love gets a diagnosis, you lose your house, you have financial hardship, whatever it is, your house burns down. I mean, there’s so much catastrophe that can happen in our lives that is that you don’t ask for and it’s not planned, you don’t know. And those things continue. You know, we continue to have experiences like that and you can have micro losses to just, you know, a friendship that falls away. You know, an argument that, you know, causes a disconnect in a relationship for a time, just all these little things. job stress, career stress, or you know, career grief, job grief, you know, you hate what you’re doing, or you love what you’re doing, but you hate your boss are, you know, you’re just not getting along, or, you know, whatever it is. These things are ongoing in our lives. And so, because life doesn’t stop lifeing, right? There’s my quote for this episode, life doesn’t stop lifeing. Ain’t that the true? And so if we can take control, a little bit, take 1% responsibility for what is going on in our lives. As it comes as it refers to grief. Then we feel more empowered to deal with those things as they come. And that’s what grief recovery is done for me.

And that’s what I talk a lot about, you know, I also say to it’s like you’re suffering already, you might as well be suffering and moving your feet, suffering in taking action. And that’s really what grief recovery. That’s the message I really want to send in that. Whether it’s been three months, or three years or 30 years, since a diagnosis since a loss. You know, since a relationship fell apart, whatever the grief experiences, no matter how recent or no matter how long it’s been. The worst has already happened. But I can guarantee you, there’s more things to come. And so do you want to be prepared for those things? Or do you want those things to stack on to the crap that happened before. You’ve already suffered, you already are suffering. So let’s do something about it. Let’s empower yourself. Empower yourself with the tools and the education and the knowledge to know that when the next thing hits that you’ll be okay. And that’s the hope. That’s the hope to know that you’ll be okay.

much love, victoria

P.S. If you have any questions on anything that I’ve shared today, or any services that I offer, please don’t hesitate to look me up on my website. And remember, when you unleash your heart, you unleash your life. Much love.

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