Kimberly Warner Interview

Unfixed Memoir and its publication via Alisa Kennedy Jones' Empress Editions

Kimberly Warner

I'm Mary Tabor. My guest today is Kimberly Warner.

Kimberly Warner: Hi Mary.

Mary: Kimberly comes to you with my intro: a soulful, generous, and a beautiful multi-skilled writer, director, fashion model, who knew? And who developed an unusual and chronic illness that we'll talk about.

Her memoir is Unfixed, and it comes out soon from one of our most prolific Substackers, Alisa Kennedy Jones. Huzzah! as Alisa, your brand new publisher is prone to say. We hope Alisa is listening. But before we begin, here's more: Kimberly is a member of the Patient and Physician Advocacy Alliance. Serves as a visiting faculty member with Global Genes, sits on the editorial board of the Journal of Health Design and contributed to the course for Clinical Confidence, a medical school certificate course. She hosted a mental health miniseries and panel at Harvard Medical School and was a featured guest on Dani Shapiro's Family Secrets that has had over 2 million downloads. Kimberly has received the 2023 Health Voices Grant, Life on the Level's 2022 Best International Contribution Award and the 2020 Invisible Disabilities Association's Media Impact Award. That is a wow and a mouthful.

Kimberly, welcome. To talk about your memoir, let's start with the chronic illness that sits at the center, what it is and where it led you.

Kimberly: Mary, thank you for that introduction. It's such a joy to see you always and to read you. So I've been really looking forward to this. What do I have and how does it live in me and where has it led me? What it's called is Mal de Debarquement Syndrome, which is French for bad dis-embarkment. So the sensation is as if I was at sea, but I never got my land legs back. For many people that actually have Mal de Debarquement Syndrome, it originated at sea. Mine did not. There's about 20, 30% of us that have spontaneous Mal de Debarquement. And it's often preceded by an intense period of anxiety, trauma, turmoil in such a way that it jumbles up the neurotransmitters. So, essentially the signaling between my brain and my vestibular system is incorrect, and it's telling my vestibular system that I'm in motion all the time. So that's the sensation. The sensation is that I'm at sea.

M: Well, that's a perfect way to put it, at sea. I've read the memoir and we're going to talk about how I read it and how it's posted now. I read the memoir as it was written. But before all that, you fell off your bike and broke your pelvis.

K: Mm-hmm. Yes.

M: In the memoir, that's been on Substack, you say that during bed rest, you learned that the father who raised you wasn't your biological father. How did you learn this?

K: That's a fascinating question. And one that is not as easy to identify with one thing other than a genetic test, of course, which is the definitive, "Yes, I have a different biological father." But pre the genetic test, I already, even growing up, had this family joke that hovered around me that maybe my dad wasn't my dad. My parents were born of the '70s sexual revolution, and they had a five-year open marriage. But my conception preceded that, and it was never assumed that it was correct. But my mom and my father, both knew that she had a one night stand with a man around the same time that she conceived me. She thought she was already pregnant with me, is how the story goes, when she had this little one-night affair.

M: If she was already pregnant when she had the one-night affair?

K: He thought she was already pregnant with me.

M: Well, then how could he be the biological father?

K: Well, it was within that first missed period. Who knows? The joke is that Charlie's sperm came in and said, "Move over for David."

M: So, Charlie is the biological father.

K: She jokes and says maybe his sperm came in and said, "Move over, I got something better here." So maybe she was pregnant. But regardless, they didn't try to figure it out. And very early on, my dad had a moment where he looked at me, I was in the crib, and he had this question of like, "Is she mine?" As he told me, when I got older, he told me he felt like I could hear his doubt psychically. And he didn't want me to grow up with that. So he shut it out.

M: Really?

K: He was a physician too, so he could have tested it.

M: But didn't, correct?

K: So I was raised knowing that. I thought it was just a joke, the other story, and it wasn't like a huge family drama. It was just something that would come up once every five years as a joke.

M: And your brother Eric knows as well but not from the memoir. Correct?

K: Oh, my brother Eric is the one that I did the DNA test because he's the one that showed up as a half sibling. So growing up, he was in my heart and always will be my full-blooded sibling. But not until we got that DNA test that said, "Eric Warner, half sibling." Did we both go, "What the?" It was a shock to all of us and truly, even to my mother. All of us were shocked. 1000% shocked.

M: So Kimberly, as I read the memoir, I was struck by the unfixed nature of the revelation of your biological father and how that came to you. Does it matter what came first, the chronic illness or the revelation. Or another way, more simply to ask this, why did you decide to begin writing the memoir?

K: I was very much needing to put it down for my own memory at that point. This was eight years ago, and there were so many synchronicities and moments of mystery and magic. And people kept telling me, "You have to write this down." And I don't have a super memory. So I was like, "I better just write this down." And at that time I was barely looking at screens. Mal de Debarquement makes digital screens very challenging.

M: Oh, I didn't know that.

K: Yeah, it's because there's a visual auditory interruption, and so everything kind of comes at you stronger. And so there is easily four years where I was barely looking at a screen. And so I started writing this when I was in the throes of no diagnosis, "What the hell is wrong with me? I've lost my identity. I've lost my career. I've nearly lost my marriage. I better start writing some of this down." So I would get it out in spurts and then lay down on the floor. Write again-

M: This happened after you got married?

K: Dave and I have been together for 20 years, but we actually only got married during the pandemic, for fun, at a courthouse. But no, we've been committed for 20 years. But we almost lost each other when I was in the throes of this because everything, I shed, every part of my identity, everything that I knew to be myself had been thrown into the sea, even physically. So I was searching for some resolution in myself, but more also just to get it down on paper. And I'm trying to remember the original question the way you first phrased it.

M: That's okay. Let's keep going because we'll come back to that because I have another way to get at it. I want to talk about your relationship to the illness that has plagued you and how you magically tied all this to the discovery of who your biological father is. So that relates to the original question. How did the two relate?

K: Yes. Well, I didn't have anything to do with putting them together. They collided at the same time. So this bike accident that you referenced, this happened in the exact same week. I've shattered my pelvis, which as we can metaphorically call the foundation of my being, on the very same week that the discoveries of this biological father, not yet validated with the DNA test. But starting to find pictures of him on the internet, family members that looked just like me. It was a breathless week. And I remember working that week and I was in a fire-walled building, so I couldn't even research it during the day. So I would get up at 5:00 AM and I'd desperately Google and find these things about this person, including the fact that he had died in 1986.

M: Oh, yes, I remember.

K: Yeah, in a sailing accident. So he was lost at sea as well. So life put them together at the same time. And even though I didn't have the validation of the DNA test, something in me started to feel really unmoored that week of work. And then Saturday was the bike accident. And then I was on bed rest for two months, and all I had to do was research and explore this possibility that started to feel truer and truer to me than I ever fathomed.

M: I know this seems paradoxical, but for me, the unusual connections that you're describing serve as a perfect metaphor for the title Unfixed. And one of the things we decided that we would talk about is, I'm very interested in the creative process myself, and I think about it a lot, study it a lot. And so I have a little slide to show you. And it may not be a question, but it could be something that adds to our conversation. So it's from Eudora Welty. And what I'm going to do here is share the screen with you. And there's one I want you to read, but this one I can read to you. If you have a reaction, fine. If not, I’ll just go on with a question. And here it is, from Eudora Welty in One Writer's Beginnings:

"The events in our lives happen in a sequence in time, but in their significance to ourselves, they find their own order, a timetable, not necessarily, perhaps not possibly, chronological. The time as we know it subjectively is often the chronology that stories and novels," and we can add memoir, "follow. It is the continuous thread of revelation."

I'm going to leave that up there for a minute to see if you have a reaction to it. If not, we'll move on with my next question.

K: I do, and the word is readiness. I say readiness in the sense that I think we all have opportunities for that revelation wherever it lives in the chronology of our lives. But until there's a readiness in our body, mind and spirit, I sometimes think we close the doors before we even know that they've been inched open. And I think I had openings prior to the big one, the bike accident, and then all of the unraveling, but I wasn't ready.

M: Do you think the bike accident was where you started because you had a lot of time of bed rest? That doesn't seem to me as the right time. So was it later or am I wrong about that?

K: That was gestation. That was all gestation. There was the revelation of the actual fact of who was my biological father, but the creative revelations were much later. Much, much, much later. There was a very, very, very long dormant period of Persephone, down in the dark without any resources or understanding.

M: Your mythical image, Persephone?

K: Yeah.

M: Let's talk about the book— and I want to talk about the documentary too, if that's okay.

K: Yeah!

M: Okay, great. With the world of publishing changing so dramatically, let's talk about how you decided to post the memoir on Substack. The way I read it, and this may have just been logistical, but for me, the story mixed with glimpses of the documentary. Glimpses of what I saw as unfixed-hope, a marvelous paradox—and I got to see the trailer while I was reading it as you posted it. Can you talk about the decision to initially post this way, which for me was mixing the two?

K: Well, the memoir had already been written before I started posting on Substack—not that it had been edited or anything like that, or polished. But it was essentially, I knew what I was going to be presenting each week, and then each week I would edit it before it was presented to all of you. Once I finished the memoir, that is when Unfixed started the documentary project. So my choice to mix those two.

M: The memoir came before the documentary?

K: Yeah. The memoir sat on my hard drive for six years without my touching it. It just sat there. Because I didn't think it wasn't something for me to share. It wasn't something that I even had shared with my family at first. It was just, "Oh, good. I've got it down on paper now."

M: Was it a question of privacy or confidence?

K: Confidence. Yeah, and I identified myself more as someone who worked in visual media. I loved writing and I loved the process, and I loved the discoveries that came from it, but it was not something that I wanted to share. And maybe there was some privacy too, in the sense that the relationships with the new biological paternal family were still fresh. And I didn't want to be that girl that goes, "Hey, I love you all, and by the way, now I'm going to publish this." So there was also just needing to be respectful.

M: I have a favorite philosopher, his name is Edmond Jabès. He was French. One of his lines is, "There is no writing if there is no risk." So it was a risky thing for you to publish it.

K: Yes. I think I was risking relationship. The first three people that I shared it with were my brother, my mother, and my aunt Janet, who is on the paternal side. And I felt if I had gotten any resistance from the three of them, I never would've shared it. But instead, the three of them came back to me, not just supporting, but glowing. Just really, they laid a foundation of trust. And because there's so much magic in the story, they felt like this isn't just personal. This is something that other people need to hear. They need to feel some of that magic in the world.

M: That's the opposite of how I experience the writing process. It's the absolute opposite. I write in a fearless way, just stepping right into the danger. But that's another story.

K: Yes, you do. I can feel it. I can feel it.

M: We're not interested in me today. We're interested in you. I want to also talk about the journey of the documentary and how it relates to your chronic condition. I think the two are clearly related because you have an unfixed ailment. Correct?

K: Yeah. And to expand on the word unfixed, we can talk about it as in physical, but it's also fluidity in identity. And it's also this willingness to experience life in this multidimensional way. It doesn't have to just be a physical thing. And so that's one of the joys that I've had sharing the Unfixed documentary work on Substack, because it's not just within the chronic illness community. And you all, are so bright that you were able to understand the foundational meaning of unfixed for me, which is we are all unfixed. We are all living within impermanence and uncertainty, and we are learning how to be fluid within all of that.

M: I'm not sure how we discovered each other, but one of the things I know is that part of the way I discovered you was as a supporter of my writing. Folks, Kimberly's been an extraordinary reader and a supporter of so many others. I say this because your generosity and perseverance define you. One extraordinary example from the documentary is your friend Dylan Shanahan with ALS. Tell us about him and what you did for him, even though he's not in the memoir.

K: No, no, because I hadn't even met him yet. Like I said, the documentary work came after, 2019. So pre-pandemic, he was my first subject in what was supposed to be a feature-length film on living with chronic illness. I still didn't have a diagnosis myself, and I was seeking people that were learning to live with what they had because I had drained my resources in trying to fix myself. So Dylan, I had gotten a recommendation. We lived in the same town. We both went to the same graduate school. And so I had never known him, but I connected with him, and he was all gung-ho. Even though at that point already, his progressive ALS, he was not speaking, and he would be able to type with me and type the essays.

M: How did you find him though, if you didn't know him?

K: I was interviewing and I put up flyers at the graduate school, and so I interviewed a few people from there. And one woman I remember at a little tea shop, she said, "I don't think I'm the right person for this documentary, but I know someone that is. And so she connected me with Dylan. And we became friends immediately. In fact, he even in an email said something about, "Maybe we've been co-conspirators in a past life and we're coming together to do something again. Who knows what that will be?" And so that was 2019. Fast-forward after the feature documentary got adapted into a two-year-long miniseries because of the pandemic. And then I sat with an external drive with all of his essays that he had written for that docuseries. Most of maybe 10% of what I was using for these episodes were being used. The rest of it was just sitting there.

M: He's an extraordinary writer and thinker.

K: And a philosopher.

M: And even though we couldn't hear him, he could transcribe. So did you not get his book published?

K: Yes, yes. And so that happened two years ago when he said, "Well, I've got six months left," which he's still around, so who knows when he's actually planning to exit. But I said, "Well, Dylan," because he didn't know what to do with this six months of time left on this planet. And I said, "I've got all this documentation, all these essays you've written. Why don't we put them into a book?" In three days, I raised $25,000 on GoFundMe from his people, his community, and that was enough to hire an editor to take this ... He was unable to edit at that point, very short sentences that he was only able to type with his eyes anymore. And we took all the material, and even some papers that he'd written at graduate school and all of that, and she organized it into a beautiful book. And I was the one that was basically leading the process, and he put his trust in me, which is honor of a lifetime.

M: Wouldn't anybody put their trust in you! So let's talk about Alisa. Do you credit Substack with Alisa's new publishing company finding you?

K: Oh, yes, yes, yes, yes. She started reading the memoir early on and was one of those early champions that just kept saying, "Go, go, go, Kim." And also, we connected through the chronic illness. She has grand mal seizures, and I very much resonated. I read her book, which is just brilliant and funny.

M: I've read Alisa’s book too and I've reviewed it on Amazon, in fact.

K: I read that review, Mary, my goodness. It wasn't generous because it was true. But it was generous of you to take the time to write that. Gotham Girl Interrupted is extraordinary and laugh out loud, even though it's talking about these tempestuous experiences that she goes through.

M: When I have your book in hand, since I can't read it online anymore, although I've read it two or three times online, you'll get a review from me too.

K: Oh, yay!

M: Here's something that may seem odd to you. I'd like to see what you think. I see your memoir as a story of forgiveness. That might not be right. But I wonder if you see that through line, despite all that you've experienced and witnessed through your own life and through the documentary?

K: Mary, you couldn't be more dead on, and I don't think I've even used that word before. But it's a multi-layered forgiveness. I would say the first forgiveness, I would say, goes to my mother, and there was a lot of healing there, despite the fact that she didn't know. I do think that there was a keeping up of appearances to not pursue the truth. And so there was a great healing there, great heart healing. The other huge forgiveness was towards myself. And I think I, growing up a perfectionist in the new age self-improvement community, I learned very quickly that I needed to constantly be improving myself, or on some growth paradigm, in order to be worthy of anything, too worthy to be alive. And so I've been dealing, even though the Mal de Debarquement came later, I had autoimmune disease that was diagnosed when I'm in my 20s. I'd been living in a body for a long time that I think-

M: Is there another autoimmune disease?

K: Yes, I was diagnosed with Graves' disease when I was 21, so that's hyperthyroidism. And that was very short after my father, my adopted father passed. And I think there was a part of me that was to accept life in all of its flux, and the darkness and the uncertainty and the pain. I was unwilling to accept life in that way and always trying to make it go away as if I didn't live on some dual plane. And so the forgiveness and the unfixed revelations really have come from this allowing. And everything I write now as you know, is like, "Let's explore the value of all of these discarded qualities, boredom, monotony, not knowing, uncertainty," all of those things.

M: You're so beautiful. No one could even imagine that you have any health problems at all. I'd like now to talk about the creative process a little bit, and I'd like to do it with a quote, and that I'm going to put up on the screen. And if you're able to, I'd like you to read it.

M: The quote is from a book I love and use when I teach. It's by Hélène Cixous, who's written a very unusual book about the creative process called Three Steps on the Ladder of Writing.

K: Yep, I will read it.

"The writer is a secret criminal. How? First, because writing tries to undertake that journey towards strange sources of art that are foreign to us. The thing does not happen here, it happens somewhere else, in a strange and foreign country. The writer has foreign origin. We do not know about the particular nature of these foreigners. The author writes as if he or she were in a foreign country, as if he or she were a foreigner in his or her own family."

Wow. Oh, I love that.

M: I'm so glad you do. I was wondering what you think of that. But before you say, I'd like to say, that it strikes me rather paradoxically to fit your journey into the unknown. What do you think and how would you describe the journey, because it's quite a journey?

K: First I'll just say I feel a bit of relief that I'm on the other side of all of that. Who knows what I have ahead. But to address the unknown and being a foreigner in my own story, I love that because to me, it talks about touching that sacred space that writing often reaches towards. And that is invisible. And we have to stay open and curious, over and over and over again, to try to polish that sacred source or reveal that sacred source. So to me, as if I were walking around in a new country of my own life, I couldn't go in with these assumptions of who I was, why I was doing it, what the outcome was going to be. I had to go without a map. And that is thrilling. Also, maybe a little bit more my nature anyway, because I'm quite impulsive. I have a deficit when it comes to strategizing, and I know this about myself. I tend to just jump in and throw myself at things. And then figure out how to swim while I'm in it. So I think there was also a little bit of like, "I don't know what's going on and why I'm doing this and where it's going to go, but I'm going to do it." And that's a thrilling way to travel, and it's a really scary way to be when you're doing it to your own life.

M: This has been so exciting to me to talk to you about this book and so thrilled that it's going to be published. I know you quote William Blake in the memoir. You do quote Blake, don’t you?

K: There's a number of different ones in there. I'm trying to remember which specific, I know there's a Camus. Which one? Which Blake do I have in there?

M: I have one for you as we come to a close here. This is from William Blake's, Auguries of Innocence.

"To see a world in a grain of sand/ and a heaven in a wildflower/ hold infinity in the palm of your hand/ and eternity in an hour."

That Kimberly Warner is how our brief time here and your memoir have been for me.

K: Oh, Mary. That is how I see our friendship. And I know we're not here to talk about our friendship, but I value you more than I can express in words. And may I say this for a second? It's not just, even the reciprocation is beautiful, but you as a human and the way you navigate the darkness and the light is extraordinary.

M: That is too kind. Perhaps maybe my close should be, “Let us rise up to life renewed.”

K: Yes.

Mary: Love to you.

Kimberly: And you, Mary. Thank you.

For even more about Kimberly, visit her personal website, or her Unfixed Media website. You can also explore her Substack at