Marisa Renee Lee, Long Covid, and Hope

[1:24]Zibby Owens: Hi. This is Zibby Owens, and you're listening to Totally Booked with Zibby. Formerly, moms don't have time to read books. In my daily show, I interview today's latest best selling, buzziest, or underrated authors and story creators whose work I think is worth your time. As a bookstore owner, publisher, author, and obviously podcaster, I get a comprehensive look at everything that's coming out and spend my time curating the best books so you don't have to. Stay in the know, get insider insights, and connect with guests like I do every single day. For more information, go to zibbymedia.com and follow me on Instagram at zibby owens. Marissa Renee Lee is the author of Waiting for Dawn, Living with Uncertainty. Marissa is a Cultivant expert in coping with grief. In 2008, after a courageous battle, she lost her mother to cancer. This loss transformed her life and led her to question what grief really is and what healing truly requires. She is now a rabble rouser of social hearing, former appointee in the Obama White House, managing director of My Brother's Keeper Alliance, cofounder of the digital platform Support All, and founder of the Pink Agenda, a national organization dedicated to raising money for breast cancer care, research, and awareness. She is a regular contributor to Glamour, Vogue, MSNBC, and CNN, and a graduate of Harvard. She lives with her husband, Matt, son, Bennett, and dog, Sadie. Welcome to Totally Booked Live. I am here with Marissa Renee Lee. I'm so excited to be with her to talk about Waiting for Dawn, Living with Uncertainty. Welcome. Thank you for having me. This is great. Thank you for being here. I was just saying to you, you have been through a time since we last saw each other. Yes.

[3:10]Marisa Renee Lee: Yes. Unfortunately. Lot of it is in this book,

[3:13]Zibby Owens: and why don't you share just a few of the things Marissa has

[3:18]Marisa Renee Lee: oh my it just oh my gosh. Share away. It's been a time, and and I feel like before I share, I need to make sure people know, you know, the book is hopeful and positive because it is it is a lot. So after my first book, Grief Is Love, came out, my mother-in-law was diagnosed with stage four breast cancer, which is the same thing that I lost my mom to. And it was just, you know, a really long period of illness and dying. And toward the end of her life, one of my young cousins went missing, and we later discovered she had been murdered by her husband. And a few months later, I got COVID, and it turned into long COVID. And that was April 2024, and I am still dealing with it now. I am thankfully, like, so much better and getting stronger every single day. But, you know, my life requires a couple handfuls of pills three times a day, lots of naps, nine hours of sleep every night, acupuncture, doctor's visits every couple of weeks. And more recently, the thing that has really helped me the most actually is GLP one. I am on a modified dose of Zepbound, and that's what's enabling me to be here today and to do a little bit of a book tour. So Oh my god. Spend the time. I actually dedicated my book that's coming out in September to Mounjaro. I mean, these drugs, it's they're a miracle as far as I can Like, I am I am so grateful. I'm telling everybody because, you know, I think for women in particular, when the healthcare system doesn't really know what to do with us, they don't really do anything to help us. And I know that there have been some studies related to a number of health conditions where these drugs have made a really big difference for people.

[5:05]Zibby Owens: And I should have said as a response how sorry I am, but I know we've

[5:10]Marisa Renee Lee: discussed You've told me that many times. It's

[5:13]Zibby Owens: just so much on your plate. The way you've also shared about your long COVID on social and in newsletters, whatever, has been really amazing. You've been so open, and I feel like we've gotten I've certainly gotten to a front seat. Like, even whether or not Marissa would be allowed to tour for this book was sort of up in the air until the last second, And she finally got clearance, and here she is. And that's so wonderful. I'm so glad you can go off and do all the In

[5:39]Marisa Renee Lee: the midst of all that, did you really have to write another book? I know. I know. I there is something wrong with me. Like, is something seriously wrong with me. It's funny. I I started writing the book, and initially, this was gonna be a book about, you know, how do you show up for yourself when you're supporting someone else who's going through it? Like, that was the premise. That's what I told my publisher. There was definitely about a page or two on that. Yeah. There was a few pages on that. The I it. I doggered those. How do you help your husband when he's not quite himself? And I was like Yeah. That was special. But then I became the person who was in it. And so I talked to my editor, Krishan, who you know, and she said, I want you to just take a couple of days and write about what it feels like to be sick. You know, like, what's coming up for you? What is this experience like? And within a few days, I had 10,000 words, and it just grew from there. And there were, you know, there were many days and weeks when I didn't write at all. Like, I was too sick to look at a computer screen. But when I could write, like, I could really write and somehow it got done.

[6:46]Zibby Owens: Well, part of the story is about how you process sort of the the grief and loss of who you were before and having to come to terms with it. And you even have a whole section where you're like, I'm sorry to admit this, but I don't want to have a disability. I want to go back and just live and not have to think about how hard it is to pick up my son or whatever.

[7:10]Marisa Renee Lee: It was devastating. And I'll be honest, I was kind of surprised. I grew up with a mom who was sick. She had MS and then breast cancer, and so she was sick for half of my life with her. So I felt like because of that, I knew what it was like to be sick or to have a disability, to not be able to move or use your body in the ways that you want to, and I was wrong. It wasn't until, like you said, I couldn't pick up my kid. He was two and a half. I trained him, sometimes using bribes, I'm not gonna lie, to climb to climb into the car and climb himself, like, into the car seat because I could fasten him in safely, but I I couldn't pick him up and put him in there. And it was my job to take him to school every day when I was sick. I had to learn to, like, really, really think creatively about just getting around my house and doing these basic things. Like, if I took my son to school and it was a bad day, I would have to rest for three to four hours, sometimes more, in order to be able to stand up and take a shower. There were some days where I just I couldn't stand up and take a shower. I would have to take a bath whether I wanted to or not because my legs were just too weak for me to be on my feet. It was really eye opening. You know, when you are used to navigating the world as an able-bodied person and, you know, in my case, I've always been tall, I've always been strong, I've always been fast. Like, you know, thankfully, have a brain that works really quickly. And all of those things disappeared overnight. Losing my breath just walking around the downstairs of our house was it

[8:54]Zibby Owens: was really shocking, honestly. And this is definitely the diagnosis. You've had multiple opinions, right? Oh, you know me. You know

[9:03]Marisa Renee Lee: and one of my doctors is actually in the room and she knows. She knows. I started out honestly looking for anything but long COVID. Because who wants this new thing that nobody really understands, that doesn't have a specific, like, treatment protocol or timeline or series of steps to go from sick to well. Like, that was the last thing I wanted. So I saw every specialist. I had every test run. I mean, I have done so many things to try and not have it be that. But unfortunately, that is that is what it is. And so once I came to a place of, okay, this is what I have, yeah, I think we got some jazz music. Yeah. Don't know what happened. Thank you. Oh. I got serious about doing whatever I could to get well. You know, I found some really amazing doctors and asked for a lot of help. And part of my being open was thinking, you know, maybe if I share my story, that'll help somebody else out there with long COVID, but it actually ended up helping me. There was a woman, she's two young kids. She first got long COVID in 2020, and she had been following my work on grief on Instagram because it was helping her process her illness. And when I shared, she reached back and she said, this is my doctor. She has changed my life. You know, I'm almost fully recovered. I think you should reach out to her. And so that's my doctor now. Oh my gosh. How I got to this place. Is that you? No. Different doctors. Yeah. Different doctors. Okay.

[10:36]Zibby Owens: I know. I'm like, who is this hidden doctor in here? Have you connected with the author Jillian Deacon? No. By the way, because she came to Totally Book Live here last time and wrote a book on uncertainty and has long COVID. Seriously? I have to put you in touch. Yes, please. Again, I should have had you two on a panel. Next time. Next time. Next time. Well, it's hard to have a newer diagnosis that's misunderstood, and it's hard to be compromised in any way, and then to be grieving from loss and other things. Okay, so where is your hope coming from?

[11:10]Marisa Renee Lee: My hope honestly, part of it is something I absolutely inherited from my mom, watching someone be sick for a really long time and still maintain a consistent commitment to living a good life. I remember when my mom was dying, she was no longer undergoing treatment for her cancer or her MS, and she was trying to plan a surprise birthday party for me and my dad. I was turning 25, he was turning 50. She was behind the scenes continuing to create joy from the ICU. With that model, it became easier, not always easy, but easier for me to say, is bad. Today, this is bad, and this is probably gonna be bad for a while, but I'm not gonna let go of my commitment to a better future. Whenever it gets here, whatever I have to do to get there, I'm gonna do it. Like, I'm relentless. I do not care, but I'm gonna get there. And what I ended up learning in the research for Waiting for Dawn is that when you have that mental commitment, it actually does open you up to the actions that you need to get to wherever you're trying to go. And so I obviously didn't know that at the time. I was just stubborn. But that stubborn commitment to hope, I mean, it really it really did make a difference. Today's episode is sponsored by Quince.

[12:37]Zibby Owens: Summer always makes me rethink what I'm reaching for every day. Lighter fabrics, better materials, pieces that just feel good the moment you put them on and look effortless. That's why I keep coming back to Quince. They focus on high quality essentials. Think breathable linen, soft organic cotton, washable silk, but without the luxury markup. It's that rare balance where everything feels elevated but still easy. Quince has beautiful everyday pieces like 100% European linen pants, dresses, and tops with styles starting at $32. Their denim is soft and easy to wear. I wear my jean jacket all the time. And their organic cotton sweaters are perfect for layering on cool summer nights. Everything at Quince is priced 50 to 80% less than similar brands. Quince works directly with ethical factories and cuts out the middlemen, so you're paying for quality, not brand markup. And it's not just clothing. Quince has really become a destination for elevated essentials across home, kitchen, bedding, and beyond, making it easy to bring a more premium feel into everyday life. In addition to my jean jacket, I recently got a white tank top dress with a beautiful cotton skirt that is absolutely gorgeous, and I can't wait for it to be warm enough so I can wear it every day, but it has been a cool spring. Elevate your summer wardrobe. Go to quince.com/zippy for free shipping on your order and three hundred and sixty five day returns. Now available in Canada too. That's quince.com/zibi for free shipping and three sixty five day returns. Quince.com/zibi.

[15:19]Zibby Owens: How do you navigate your not that this is any of my business, your relationship with your husband when the two of you are going through a lot of stuff, both of you, individually and together? And you and then after five years of infertility, which you talk about in the book, adopting your son, like, you two have been through a lot. Yeah. We were actually just talking about that the other day.

[15:40]Marisa Renee Lee: It's really hard. I think know, one of the things I learned as we navigated infertility together is when you're grieving something with someone else, you can sometimes make the mistake of assuming that you're going to grieve it in the same way, but you almost never do. And so for me, you know, the the infertility situation, it was just very different than it was for him because it was also my body. You know, was constantly sick. I was constantly on all of these drugs, you know, trying and going to the doctor's appointments, and and he was the support person. And so when it didn't work out, I didn't even have room to grieve in the beginning because I was so physically sick from the process itself. And so that taught us that, like, you know, you have to let the other person do things how they're gonna do them and be okay with it. You know, I process a lot by writing. Like, I write every day. I don't feel human if I don't write. I don't know the last time my husband sat down and put, like, pen to paper with his feelings. Like, he's not gonna do that. But we both go to therapy separately, and we talk about our therapy and, you know, how we're doing and what we're learning. We try to be really intentional about checking in on each other. And we also just try to be really honest about the fact that sometimes it just sucks. Like, the fall of twenty twenty four was when I was my sickest, and it was just it was really hard, you know? And I said to him recently, I don't think you ever gave yourself permission to grieve the loss of your, like, overly capable, competent, can do a million things at once wife. Like, you're allowed to do that. And he admitted that he felt guilty for, you know, sometimes being angry and resentful that I am a different person right now. And I'm like, no. Like, you're allowed to have those feelings. Like, that's okay. I know it's you're not taking them out on me. And so giving people permission to feel whatever they feel when you're grieving something together, I think is really important.

[17:44]Zibby Owens: I just don't understand how you can just how do you just not be annoyed that you're like, have all this stuff? Like, I feel Oh, girl. Don't worry. I'll

[17:58]Marisa Renee Lee: actually take it a step further. Rage. There has been a lot of anger that I've had to process. You know? It it felt like we finally got to our happy ending. You know, like, we finally got to the baby, I finally got to my book, my business is going well, we, like, moved back to Hudson Valley where I grew up. Like, everything was supposed to be good, and then all of a sudden, everything just completely fell apart in ways that I wasn't even capable of imagining, honestly. So there there has been a lot of anger that that I have to contend with, you know? Like, this is not the life that I envisioned during those five years when I was dreaming about becoming a mom. Like, that's for sure.

[18:39]Zibby Owens: Did you actually trademark the run and hug? No. She had a joke in the book about how she has a run run and hug where she's like, run and hug. And the and her kid, like, runs to her and hugs her, so she doesn't have to pick it up. And then she put a little TM trademark.

[18:57]Marisa Renee Lee: Yeah. Know. That that that part is made up. But the run and hug the run and hug was real, and he still for it. Aw. You know, he's four and a half now, and he'll say, You sit there, and I'm gonna come as fast as I can. And now the as fast as I can is a little bit terrifying. But he he loves it. So, yeah, there has been a lot of rage. There's also I mean, you know, you're a mom, and as moms, like, we want everything to be perfect for our kids. Like, we want them to have, like, the best of everything all the time. Right? And so to suddenly be in this position where, you know, I know what it feels like to have a sick parent because I lived that experience. And then to feel like, not that I, like, did that to my kid because obviously I didn't ask for long COVID. It was it was really hard. And I had to I had to shift to thinking about, you know, what are all of the things that I learned from having a sick mom? And, like, what are the things that I can give Bennett as a part of this experience instead of looking at it from a deficit framework? But it's taken a lot of work, a lot of therapy, a lot of writing, a lot of crying.

[20:07]Zibby Owens: What were some of the most helpful things other people did for you?

[20:11]Marisa Renee Lee: So I wanna mention one of the things that you did Aw. Because I think that this is something that people don't think about as helpful and tend to not do it. You knew I was sick. You'd been following along. You know, we email back and forth a bit, and you continued to invite me to things. Because one of the hard things about navigating, I think, any form of grief or uncertainty is the loneliness. Like, I was stuck in my house most days for weeks and, you know, months at a time. Like, I I still sometimes will go multiple days without leaving my house because I just am in a place where I need more rest. And you feel like like the world has forgotten about you because you're, you know, you're just there by yourself. And so having people continue to extend the invite in a no pressure, you know, no expectations kind of a way, like, it really does help a lot. You feel more connected. So thank you for that. You're welcome. I'm glad you said yes. Here we are. I could finally say yes.

[21:17]Zibby Owens: Anything else? Because I know that people have people they love who are suffering or who are going through things like this and sometimes it feels like there's nothing to say and nothing to do. Is there anything that helped you aside from people continuing to invite you?

[21:33]Marisa Renee Lee: So I always talk about support in sort of three contexts when it comes to grief or illness, uncertainty, etc. One is just showing up. I remember the night of our last pregnancy loss, some of my roommates from college just they just showed up at our house. You know, they lived close enough by. They brought cookie dough and bourbon, and we watched American Ninja Warrior, which is, like, a great distraction when you're super depressed. And nobody needed to say anything. Like, they knew there was nothing they could say or do that would make it better. So we just ate cookie dough and I drank bourbon and we watched TV. The second thing is, like, thinking about practical things that you can take off of someone's plate. You know, taking their kid to soccer practice, walking the dog, cleaning the house, dropping off a meal. But if you're going to bring a meal, either make sure that they don't already have one or bring something that's freezer friendly because food is one of the first things that people think of. And then the third one, and this also just goes back to my mom, is do something joyful. After that last pregnancy loss, I have 11 type a, very intense roommates from college, and they each took a month, And someone was responsible for sending something joyful every month so that for a year, like, we continued to get these different treats. And it was everything from a box of gourmet meats, because we're carnivores in my house and my husband likes to grill to a really cozy blanket that we still fight over. And so just, you know, thinking about things that will make someone smile.

[23:09]Zibby Owens: That's such a good idea. Are you gonna write another book? Like, can you take some time to just enjoy this and get out there and So funny. I so yes, and.

[23:23]Marisa Renee Lee: I in the midst of all of this loss, you know, my my kid has been growing up around it. And and we don't talk about every situation, but the one that was hardest for him, we lost my grandmother this summer. She was almost 102. So we were very, very, very lucky. And she and my son, I mean, they just were really close. You know, like, laughed together, they would sing songs together. Like, they just had an amazing time together. And so for him, that was really his first loss. And he said to me, sometime in the last couple of months, you know, we were talking about my grandma, and then he said, you know what, mom? I'm gonna love you until forever. And I was like, book title. I was like, you get it. I was like, that is the grief is love for kids. We're gonna work on that together. And so I asked him if he wanted to help me work on a book for kids to help them when somebody they love dies. And he was like, sure. So so we'll see. I

[24:25]Zibby Owens: love that. Marissa, thank you so much. Thank you for sharing your story and your experience and letting the rest of us in. So hopefully, we can help you back and having me. For amazing. Continuing to write and share. Thank you. Thank you. Thank you. Thank you for listening to Totally Booked with Zibby, formerly moms don't have time to read books. If you loved the show, tell a friend, leave a review, follow me on Instagram at Zippy Owens, and spread the word. Thanks so much. Oh, and buy the books.