Grief activist Lisa Keefauver joins Zibby to discuss GRIEF IS A SNEAKY BITCH, a warm, irreverent, and powerful guide for those navigating grief and those supporting the bereaved. Lisa shares the harrowing journey of losing her husband—a massive, undiagnosed tumor caused a scary shift in his behavior and culminated in a series of catastrophic strokes that took his life. Lisa delves into the complexities of grief, and then she and Zibby explore the importance of rituals, shared stories, and the need to normalize grief as part of the human experience.

Transcript:

Zibby: Welcome, Lisa. Thank you so much for coming on Moms Don't Have Time to Read Books to discuss Grief is a Sneaky Bitch, an Uncensored Guide to Navigating Loss. Thank you. 

Lisa: I'm having a little surreal out of body moment being on this side of the microphone and being in conversation with you.

So thank you so much for inviting me. I appreciate it. 

Zibby: Oh, it's my pleasure. It's my pleasure. First of all, I feel like we should preface the episode with the same thing that you prefaced the book with, which is this sort of non gendered, you know, thing. Bitch announcement that you're not getting, you know, so maybe you should talk about that.

Lisa: Yeah. Yeah. I mean, I recognize that it has a gendered name in our culture and as you mentioned in conversation with my publisher, I thought, oh, we'll put a note up front. This is really about the ways in which I'm calling out our culture around our false narratives about what grief really is and the way it can be sneaky and sort of reclaiming it and owning it.

And so that we can understand a little bit better how to navigate grief. So there's not a, this is not a gendered slur slam or slur. This is really a reclaiming of like, we're going to name what's, what grief is really like and, and go from there. 

Zibby: Yeah. Well, It's sad to say that your book comes from a very personal place, which you write about obviously in the book, and I'm so sorry for your loss and I'm very grateful for you going deep into it and telling us sort of the moment by moment of what the experience of losing your husband was like.

And I was hoping you could, you could share a little bit about that. You know, I always hate to do this to. People I talked to about grief where it's like a beautiful day out and whatever. And like, I'd like you to go to your deepest, darkest, most horrific moment of your entire life. Go there. So I'm sorry.

Lisa: Well, I appreciate the acknowledgement but also, first of all, there's never a day in someone's life. It's been almost 13 years since Eric died that I don't relish an opportunity to talk about Eric. So I welcome that. And I think most grievers would say the same. Yes. And I do want, I'll tell you a little bit about the book is definitely for grievers and educating grievers.

It is not a memoir, but I, I knew very clearly from the beginning that I needed to weave in a little bit of not just my professional training as a social worker, but my personal narrative too, to sort of like, yeah, My bona fides, if you were, as it were, so yeah, 40 years old, I was married to the love of my life.

We had a seven year old daughter and the year before he ended up dying in my arms, he began to become a completely different person and I won't go into the details, but he went from being the most loving, most involved, co parent, co household manager, carry a spider outdoors, You know, instead of killing it kind of guy to becoming an a geographer to becoming getting lost, going places, physically looking unlike anything he had ever looked like before, becoming frankly quite dangerous and scary.

And just our lives turn upside down from doctor to doctor to doctor. No answers being dismissed, being told he had a mental health issue only to discover, uh, after a year of, of surviving, like living in a household with a stranger, making safety plans. You know, just trying to figure out what was happening in our lives.

I got a call to come into the ER because they had finally, after a year, managed to do a scan and it turned out he had a grapefruit sized brain tumor that had shifted his brain stem. And I can still remember to this day, the ER doctor, his neurologist had come down and looked at us both and said, I literally don't understand how you're walking or talking.

It has shifted your brain stem in such a way that. That's like impossible and a few days at home passing our nine year and a wedding anniversary he had a 13 hour surgery the attempt the goal was he's probably not going to survive this but we're gonna have some time We're gonna reduce this tumor We're gonna figure out what's next kind of and after a 13 hour surgery and thank God they let me in to post op Seeing him went home at 3 in the morning to check on my daughter Friends family were there came back to the hospital three hours later.

No sleep, and he had slipped into a coma and another 14 hour surgery and all kinds of interventions for the next week and they discerned that he had a series of catastrophic strokes that were you know, he was meant he was never gonna wake up and so I found myself calling in everybody including bringing my daughter into the hospital to say goodbye to her dad at seven years old, I had them take out all the leads and you know, his face, everything was swollen obviously from brain surgery and try to make him look the least scary version of himself he could and then laid in bed with him for about nine hours until he died in my arms and then he took his last breath and I somehow took my first breath without him.

And I stood up and I went home and I told our seven year old daughter that her dad was dead. Still, like I said, it'll be 13 years this August and I've experienced other losses since and obviously been witness to so many other people's losses in my work and it still sometimes feels that way like I'm telling a story of somebody else's life, if that makes sense.

Yeah. Yeah. So that's how I arrived. That's one of the ways in which I arrived here to be doing this work and so passionate about my work as a grief activist. Yeah. 

Zibby: I'm so sorry for everything you went through. You know, when you wrote about it in the book, you described sort of the moment of being in bed with him.

I feel like you said you were there for nine hours. 

Lisa: Yeah, yeah. I think they took his life, you know, they took him off life support around eight, nine in the evening and he died around six in the morning. So we, I just laid there and yeah, absorbed every freckle and relive the 12 years we had together and told the, sneaky thing, so many sneaky things about grief and loss is Eric was our memory keeper.

He had the memory of a vault and I have the memory of a sieve. And so I really spent that time trying to record everything about his physical experience about what he's, I mean, he didn't smoke great, we're in the hospital, but like what he felt like telling the stories to just try to like lock it in my brain.

Cause I knew I wouldn't like, he was, he's always the person I went to to be like, where did we travel and what was that restaurant? And what movie did we watch? And so that was that experience. I tried to write a little detail about that. Yeah. 

Zibby: Oh, so terrible. I'm so sorry. I also find it a crime that nobody diagnosed it earlier when he was clearly symptomatic.

I just, the healthcare system is so broken for that to have happened. 

Lisa: I just finished treatment for breast cancer, thankfully. And I'm so grateful to see that I'm clear and I was misdiagnosed for a year. I went from doctor, doctor with a lump, had mammograms, had exams, was told it was nothing. 

Zibby: How is this possible?

Lisa: It was triple, triple positive breast cancer. I was like, did I do something in a past life? Like what is happening here? 

Zibby: Oh my God. 

Lisa: I'm okay. And I'm so grateful to say at this moment, I'm cancer free. And it's, I mean, there's, I've just have so much gratitude for this moment, but that everybody's loss is profound and complex in their own way.

I do think, and I was just saying this to somebody else. The ambiguous loss that I experienced in that year when Eric was physically present, but he wasn't him, but we didn't know why. That took me years to really come to process, like I was processing as death loss as well as can be expected in a grief illiterate world and, and all the things that I was having to do.

But I think it really took me a couple of years into my grief when I really had to like own and name and process the ambiguous loss that it means. And, and for folks listening, if you have somebody in your life with dementia or Alzheimer's or addiction where someone is physically present, but not themselves, that's such a profound loss that we don't name and then yeah, so. 

Zibby: Could he tell that he was changing or not? 

Lisa: No, and that was what made things really sticky I would say something to you and you would get really aggravated and just talk about like this is really who I am and you know, he would sort of right when in that small window of time. So July 29th was when we were in the ER and August 16th was when he died in my arms So I'm literally talking two and a half weeks. So in the four days or five, like in the week, basically, we ended up after they discharged him to come home for a couple of days before he went in for that first surgery, they gave him some medications that helped reduce the swelling and imprint on his brain.

And in that little window, he was, you know, we recognize what had been going on. We made amends with each other. We talked about what, thank God we'd had some advanced care directive conversations so that I wasn't making a decision that I didn't know. So there was that little window where he was well enough and medicated enough where I think he could understand.

I don't think he understood fully the impact, but he got. Yeah. So I mean, there's some relief for me a little that he could come to grips with why things had become the way they had. It had just become a very scary, you know, I mean, I was making like safety plans, you know, it was just like a it's just a surreal 360.

I don't know what the description is there, but he did. No, I think in the end and we made, we had a little pocket of window to tell each other we love each other and to make amends and to begin to grapple with why our lives had been the way they had been. So, yeah. 

Zibby: My goodness. Well, in the book, you do a really painful, great emotional job of describing grief and the Passage that resonated with me kind of the most is this confusion after in the immediate aftermath of a loss.

We're like, how is the world still going on? Like, how is, I don't think I dug it.

Lisa: I think it's the world still spinning. 

Zibby: Yeah. And like, how, how is the key still opening the door? And how is the world still spinning? Someone worried about, you know, a line or what it's just like all the things that people talk about and do in life and you're just like, but the world to me, my, the universe must have changed because my universe changed so much and yet it doesn't.

So tell me about, and I also feel like when people are grieving and when they are feeling like that, there's nothing that will change or make that better. Like you can't anticipate how crazy it will feel right and you can't when you're in it. Right, reassure someone that it will pass, because it feels like it will never pass.

It's just sort of awareness and making sure that you know also that other people are going through those feelings at the beginning as well. 

Lisa: Yeah. I think normalizing it, which is what I try to do throughout the book, particularly when I explore the chapter around what happens to our grieving brain, which is part of why we feel crazy, but also just, you know, this is a shock.

Our bodies go into shock and we basically are in a chronic stressor state. And so, of course, everything feels crazy and overwhelming and our, you know, I offer this manuscript. Our lives are built by the stories we tell of our experiences and a death loss or some other catastrophic loss is akin to the manuscript of our lives being torn to shreds and then handed back to us with no instructions on how to live our lives.

So, of course, we feel lost and disoriented. There's physiological, neurological effects going on our brain. And to your point, you know, yes, to an early griever, you can't necessarily convince them. But I didn't have anyone in my life and remember, I was a clinical social worker. No one around me knew anything about grief.

Like we didn't talk about it. We didn't understand it. And so while I may not, the book may not be able to convince a griever that it will end or that it's normal they're happening. I try to do in, in the book, walking through different examples of why it's happening, why it's temporary, the things that you can do to help sort of mitigate.

Against the brain fog and the grief brain and all of those things. But yeah, the world is still spinning and people are still complaining about traffic and their husbands. And, you know, I mean, literally like planes are flying overhead. I was like, how are planes flying overhead? You know, and how does the door, yes, as you said, how does the key unlock the door that Eric's never going to walk through again?

I've never met a griever in my entire career who hasn't had that experience of disorientation and the world being sort of ripped out from underneath them and good news, I've never met a griever over time who hasn't found their bearings again and who hasn't found some stability underneath them and found that the world does not feel like such a spinning topsy turvy place and it just takes time.

Zibby: It's almost a reluctant stability. Like you don't want the new world. You don't want the new normal. 

Lisa: Exactly. Exactly. That's a weird thing. It's, you know, this happens in fits and starts for people in different ways. It's like when you have that first moment of laughter, which I remember having, or that first moment of normal or stability, it's like a good news, bad news scenario.

It's like, thank God, because how can you sustain, withstand a life that feels so upside down, and guilt or shame, or I don't want to be happy with a life without my person. You know, if we're talking about a death loss, it's that both and of those, those moments. And we have that so much in life and especially in grief.

I think I refer in the book to smiling, right? Like when you're smiling because something amazing happens, but crying because your person isn't here to tell them about it. 

Zibby: Yeah. 

Lisa: That feels to me the ultimate reminder of the, yeah, of the ways in which when the world stops spinning, we are grateful and yet sorrowful all at the same time that it's not spinning in that way anymore.

Zibby: Yeah. Yes. What do you tell patients or? You call them patients, right? 

Lisa: Clients, clients. 

Zibby: Clients, clients. 

Lisa: Yeah, yeah. 

Zibby: I know that didn't sound right. 

Lisa: No, that's okay. 

Zibby: What do you tell clients about sort of place based grief or like places that trigger your grief or that some, like a, like if you were to go into that same hospital again or a car ride or just something like we all have those moments, like how do you sort of clear the air barring, you know, crystals or smellings, you know what 

I mean?

Like what do you mean? How can you do it? 

Lisa: Yeah. Yeah. Yeah. If you have rituals that you believe in, spiritual rituals or religious rituals, I really am a big believer in rituals, just as a side note, and really wish that I had grown up in a family that had more. I grew up in a non religious, non spiritual family that I had more of those to rely on because I think they are meaningful in the way that they ground us.

When the world feels so spinny, but when we're thinking about, and this will depend on how far we are away from the loss. But when we're talking about what you're calling of triggers, like place based triggers, it's the car or the hospital. Sometimes by the way, the triggers are smells, songs, sounds, movies that the, I mean, the, the thing is there.

Part of white grief is a sneaky bitch is, you know, they can pop up anywhere. You know, to the degree that we know we're going to having to be going to a family reunion at the house or we're, you know, to, to the degree we know you might be encountering a trigger, I would say sort of make a plan, sort of remind yourself that you might be triggered.

What is your escape plan? Can you same with the holidays? Can you find a buddy to call, you know, like what kind of space can you allow yourself? Can you notify somebody? I might just need to. You know, peace out and that's what's going to happen. So gifting yourself the permission or finding a friend who's said, like, you're going to have to just hold me cause I'm probably going to cry.

Right. And just, and also making space for that and not trying to put on a happy face for the things that pop up when you're in a coffee shop and a song comes on that was never played on the radio, but as your song and somehow is playing, which has happened to me so many times over these last 13 years.

You give yourself grace and space. I think that most, the best thing I can say to somebody, so much of our harm and grief or what we is all the shooting we do all over ourselves, 

Zibby: you 

Lisa: know, the ways we should and shouldn't ourselves. So when those triggers come up and you're in me, if you're driving, pull over, be safe, right?

If you're in a coffee shop and you don't want to cry in front of people, although I say cry in front of people, if that's what comes up for you, go to the bathroom, excuse yourself, do your best to name it this is a trigger. This is what's happening. It's gonna pass because no feeling in the history of the world has ever lasted.

Not the ones we want, not joy and delight and amazement. Gosh, darn it. I wish we could hold on and not sorrow or despair or shame. And so the more we grip or resist, the longer it's going to stay. So when those triggers come and you maybe can't avoid it because you can't, not go to those places or hear that music or see that movie.

Do your best to release that resistance and allow it to pass through because it will. And the more we do that, that's how we metabolize, metabolize our grief. The more we resist or shove it down, the more it lingers and hangs around in its sort of raw and unprocessed form. And the more it sort of harms us over time.

I also just want to name, like, sometimes you're at work. Like I got called back to work two weeks after my husband died. You know, which, and that was like luxurious for a lot of people to have less time. 

So, you know, sometimes you can't, sometimes you can't be with the trigger. You gotta, you're in a meeting or, you know, you don't have that luxury.

So just make sure that if you have to hold it together and you, you know, pinch your cheeks or do whatever you have to do to get back in the room, that later on you make space. Later on in the day, later on the next week, let that out. Discharge that experience. You know, so I just want to name, like we can't all just be like, you know, you might be interviewing somebody on a podcast or you might be doing something official where you can't be with it, but just make sure you process that trigger at some point.

Zibby: Has your own podcast, Grief is a Sneaky Bitch, helped you with the processing? And I know you've had on such amazing guests and, you know, what have you sort of taken away from their experiences? 

Lisa: I really have. I know you get this because you do this. Like every time I have a guest on, I learn one or two or 12 things just sort of at the intellectual level, but also about my own grief about how I show up for other people's.

I mean, I mean, I don't have as many episodes as you, but 90 something guests, it's hard to pick them all out. I mean, one that's been standing out to me recently, this from last season was my conversation with Colin Campbell. Who you've probably met who wrote Finding the Words in part because his reliance on ritual was so profoundly important to his own and his wife's own experience of grief.

It really, again, almost 12, 13 years after my Eric's death got me thinking differently about how I might incorporate ritual in my own grief, especially because I've been going through new ways of grief through my own cancer diagnosis and everything that has come as a result of that. So I think that is a guess, but everybody is wisdom, their shared stories, their vulnerability, the connection that we gain when we are vulnerable with one another. It's all been, I don't know, just a weird metaphor popping in my mind, like fertile soil for my own grief and the metabolizing of my own grief, but also fertile soil for how I show up for other people.

Yeah. 

Zibby: Yeah. Amazing. So how often do you do it? Weekly? 

Lisa: Yeah. This last season I did it weekly and I actually recorded my podcast all the way through my cancer treatment. So I was showing up on video bald with sores on my head. There was a week I had no eyebrows and no eyelashes and it was a real circus.

But the reason I did it is I, these conversations are so important. Grief and we never know what gifts and connections and sense of belonging we're going to have when we're in conversation in general, but particularly around the hard things that we tend not to talk about and everything about who I was, which happens in all kinds of losses.

We lose not just our person if it's a death loss, but we lose our own identity. 

Zibby: Mm hmm. 

Lisa: And who we are in the world and with cancer and breast cancer in particular I mean losing a breast and the hair and all the things and chemo brain is real let me tell you the podcast and those intimate conversations were about the only thing that made me feel like me 

Zibby: Mm hmm 

Lisa: And I could anchor back to that where we started with the spinning world, like I could anchor myself in the world in a way because it was like, Oh, this is what I'm meant to be doing. This is where I get to show up as the Lisa I've always known, even if all these, you know, external things don't look at all like the Lisa that I knew. And that's been I mean, the show is just one of the biggest gifts in my life. 

Yeah, for sure. 

Zibby: Amazing. 

Lisa: Yeah, I love it. 

Zibby: I love it. Well, good for you for not stopping.

As you were talking, I was like, if I was going through cancer treatment, would I stop podcasting? Probably not. Do you know like, right. 

Lisa: I mean it's. 

Zibby: It's, you have to keep your job, like you have to do your, you know, to the extent that you can keep anything the same when something terrible is going on, you know?

That's always helpful. 

Lisa: And I want to give permission because I do think, and I talk about this a lot in the book, sort of our cultural baggage that we take into our grief productivity and capitalism and all the crap that makes grief even harder and causes us to suffer unnecessary. So I don't want to You know, sort of be braggy about, like, I kept working and doing the podcast.

Zibby: No, no, no. 

Lisa: I didn't take advantage. And I didn't, like, there are plenty of other things I sat down, but I really had to take, like, and this is a, I talk about this a lot in the book too, and this is an invitation to anybody listening who's grieving, is like, it's an invitation periodically, sometimes hourly, sometimes weekly, sometimes monthly, when you're in the depths of despair, of grief, to, like, evaluate what resources me and what drains me and the answer to those questions are going to vary sometimes hour by hour or minute by minute, especially when you're in the early phase of grief and for me. And so, you know, early on in my treatment course, I mean, I went and gave a TED talk between diagnosis and, and starting the surgery.

But as I was, you know, going through, I just kept booking guests, but I, I had to check in, you know, weekly with myself, like, can I really do this? I turned, you know, I stopped teaching my university course the following semester. There were other things I sat down, but I really had, we all, this is the invitation I talk about throughout the book, and I really tried to offer invitational languages when we're laid low by something like loss, a profound loss.

I'm not going to use the word gift, but it is an opportunity or a reminder to really realign with our values, to check in with our needs, to figure out where we resource ourselves and what are the resources, and to give ourselves the permission that that can change over time, and that isn't a sign of failure or weakness.

And actually, the more we resource ourselves in the way we need to, which sometimes means doing the work and sometimes it means not doing the work, the more capacity and agency we have and the more bandwidth that we have to do the hard work of metabolizing loss. And, yeah, so for me, it was the right answer this time around, you know, and that particular piece of my work.

But there was plenty, believe me, that I sat down. 

Zibby: Yeah. No, and I, I didn't mean to say, like, full productivity ahead. I meant because, like you, I get so much joy and I get so much out of the conversations. It's purely selfish. You know, I would hate to keep it up. 

Lisa: Exactly. I was like, no, I need to be. Cancer journey, much like grief, is a very inherently isolating experience.

And so being in conversation on the podcast was like one of the ways I felt not just tethered to my own identity, but tethered to the world. 

Zibby: Yep. 

Lisa: Because my whole life was just doctor's appointments and chemo chairs and radiation appointments, you know? Other than that.

Zibby: I feel like you have joined. There is like this grief expert community, right?

You're all, I don't think people understand how close different grief counselors are and that there is this whole group of you who is, lifting each other up. And yes, many of you have books and many of you have podcasts, but you are all in service to everybody else. You're like the grief angels or something.

Lisa: Oh, I appreciate that. I feel so grateful to have that community because I didn't have that in the early years of my loss. I didn't know another widow for a long time, you know, my age, but yeah, we lift each other up and of course support our work. But you know, Megan, of course, and Claire Bidwell Smith and all those folks, I think we just also show up for each other in a way, a knowing way.

Like I see you, I got you. Whether it's like an anniversary or whatever is happening, it's, I'm, I'm beyond grateful for my community of grievers and grief experts and to be a part of that is kind of a pinch me moment to be honest. 

Zibby: Yeah, it's good to switch gears to close here because you have written an actual book in addition to all of I have written an actual book.

So for the right on the writing side of things, what advice do you have for aspiring authors? 

Lisa: Well, this is my first book, it won't be my last, and I actually had to finish it between diagnosis and turning it into my, my publisher, which was a real doozy woozy situation. I think my experience was a couple of things.

I gave myself time, I set time. I mean, I made it a ritual. That's where I brought ritual into my life. 

I created ritual, turned off the noise, had a couple, you know, I had a certain ritual that I had when I was really in the depths of writing that was sort of about the writing process for me that was really helpful.

The other thing is I had been collecting this data for years. You know, I had had Word documents and social media graphics that I had just been trying out all of this over time. So it wasn't like I sat down to write from scratch, and none of us really do. We just sometimes don't have physical representations.

So I gave myself permission to sort of cull all that I had put out in the world or put down in my own journals and the, and things that I had learned. And then the third for me. And this might not apply to all kinds of books, but I even when I write my next books, I think it will show up in the way was every time I caught myself trying to speak in a voice that wasn't mine, speak in a like quote unquote professional voice, although I very much bring my professional lens or speak in a researcher voice or a expert voice instead of My voice, which is my authentic voice.

I'm showing up as your wise best friend is sort of the mantra I kept thinking about in and that was really important to me I just I would call myself because I would get stuck when I was trying to be somebody else Yeah, when I was trying to be a different kind of writer Yep. And I would just be like, that's not the book that I'm writing.

That's I just can't write that book. That's for somebody else to write. So coming back over and over again to like, is this something Lisa would say? Is this a Lisa voice? And that took some courage because there was definitely some imposter syndrome as every author has ever had in the history of writing probably.

But it was a really meaningful and when I narrated my book because it's an audio book as well and could read it. And really read it out loud for the first time after reading a million iterations of the book over time. I felt so proud and reminded that I really was able to bring my, in that case, literal, but you know, metaphorical voice.

And for me, that was most important because really this book in particular, I wanted, if you don't have somebody in your life, who's grief literate, who knows how to support you, I wanted you to feel like you have me and you can come back to these pages over and over again and feel like somebody gets you wherever you're at and that as a writer was, yeah, just such a gift and such a profound thing to do. Yeah. 

Zibby: I love that. That's so nice. So comforting. And I just know that there's somebody out there who just took a deep breath knowing that you were out there for them. I mean, it's, it's really a gift. Anyway, Lisa, thank you so much.

Thank you for sharing your experiences. I know we didn't even get to a lot of your subsequent losses and all the things that have happened since, but you know, 

Lisa: You just got to have to read the book or maybe we'll have another conversation another day. 

Zibby: Well, thank you so much for being just of service to so many other people.

Lisa: Oh, thank you for having me and for this conversation. It was wonderful. 

Zibby: All right. Have a great week. Okay. Bye bye.