“Some things can’t be healed. They just need to be held. Narrative medicine does a great job with this — sometimes the healing is in the holding.”
Kimberly Warner, author of “Unfixed”
Thank you to Mr. Troy Ford, Annette Laing, <Mary L. Tabor>, Jill Swenson, and many others who tuned into my live interview with Kimberly Warner last week.
Kimberly Warner Bio:
Kimberly Warner is a filmmaker, author, and patient advocate whose work explores what it means to live fully in a body that doesn’t always cooperate. After studying pre-med and biology at Colorado College and pursuing graduate training in naturopathic and classical Chinese medicine, she left a clinical path for a creative one. In 2015, a rare neurological condition upended her sense of balance. That experience became the seed of Unfixed Media, a multimedia platform for chronic illness storytelling that has been recognized by PBS, Harvard Medical School, and the Invisible Disabilities Association. Her debut memoir, Unfixed, was serialized on Substack, picked up by Empress Editions, and earned a Publishers Weekly Editor’s Pick and a Kirkus review calling it “genre-defying.”
Kimerly is a member of the Global Advocacy Alliance, the PPAA (Patient and Physician Advocacy Alliance,) and a visiting faculty member with Global Genes. She also serves on the editorial board of the Journal of Health Design and is an ambassador for the Vestibular Disorders Association).
The full transcript of our conversation is available below.
Transcript:
Joshua Doležal:
Welcome back to The Things Not Named. I’m Joshua Doležal, and my series this year is titled for a phrase from Willa Cather. Cather famously said that it’s the presence of the thing not named that gives high quality to fiction, drama, and poetry. So this year I’m asking that question of medicine: How might we all be more attentive to what goes unsaid in the clinic, in popular culture, and in the experience of illness from the patient’s side?
My guest today is Kimberly Warner. Welcome, Kimberly!
Kimberly Warner:
So great to be here. I love that you are exploring the white space, the unnamed, and that you’re putting that into the realm of clinical care this year. That’s fascinating to me.
Joshua Doležal:
It seems appropriate for illness and especially for your story. So, lots of mouthfuls there in your bio. You’ve been really active, it seems, in medical communities as a patient advocate and also as a storyteller.
Kimberly Warner:
Yeah, it was not intended. I certainly didn’t set out to go that direction. Although I do remember even in high school when I told my parents I’m going to medical school. And my parents said — well, my father was a physician and they said, do you really want to work with patients all day? And what’s the reality of that? And I said, no, I want to be a high school health teacher. And they’re like, how are you going to pay off your school loans? And I’m like, I don’t know, I’ll figure that out. But it’s interesting to look, you know, 35 or 40 years later and see how education has become a really big part of the way that I work with healing. And a lot of that has come through my own personal struggles and personal insights through living with a body that doesn’t always feel great.
Joshua Doležal:
I mean, it’s great that you’re using storytelling as a form of advocacy because I think it’s underutilized. And we were talking before we went live about narrative medicine and how it began at Columbia University. But there’s a long tradition of doctors writing about medical practice and really giving voice to things that can’t be said in the examining room or in the operating room. And I first came to this in graduate school. I was learning about deconstruction theory and this idea that all reality is constructed by language. And I kept wondering, well, what about the body? You know, the body has a kind of grammar. The body has a way of making sense of things and finding balance. So it’s not all relative, as Derrida and others would say. So I got into medical history and wrote a dissertation on the medical humanities and taught for many years courses like illness and health and literature, where I would have loved to have featured your book. It’s nice to be sharing that with folks on Substack this year.
But I want to get back to your memoir, which is the first in this year’s series of illness narratives. I’ve been mostly interviewing doctors who are either in the process of writing a memoir or have written memoirs. My conversation last week with Damon Tweedy centered on his second book about mental illness and integrating mental health care into general medicine. So you’re the first author of an illness narrative. And before we dive into that, could you just give us a brief synopsis of your book for anyone who hasn’t heard of Unfixed or doesn’t know anything about it?
Kimberly Warner:
Yeah, I’d be happy to. I’ve got the little dust jacket summary here, and I can read that to you. But I’ll preface it with — it’s not your classic illness narrative in the sense that it’s a weaving of two different types of narratives, though they are both about identity, because anybody that’s lived with chronic illness knows that that really can crush our identities. There is — it’s not — true in the sense that I have a stack of favorite illness narratives here, and a lot of them are just like, this was the diagnosis, and this is the journey with that, and this is the resolution. And mine is much more complicated, let’s say.
But here’s the dust jacket summary for those that don’t know. Unfixed: A Memoir of Family Mystery and the Currents That Carry You Home, is a haunting exploration of identity, loss, and the unsteady ground of becoming. When a midlife DNA test reveals that the man who raised her isn’t her biological father, Kimberly Warner is drawn into two parallel mysteries — one excavating the silence surrounding her beloved father’s death, the other tracing the absence of a stranger whose blood shapes her very being. As she unravels the secrets hidden beneath her family’s story, another rupture emerges, this time in her body. A mysterious illness takes hold, leaving her adrift in dizziness and a growing awareness that her body knows truths language cannot hold.
Joshua Doležal:
Nice. And I’ve got my copy here, so I’ll put a link in the show notes for anyone who wants to order it. So you are braiding two stories. Why did you not tell them separately?
Kimberly Warner:
Because they were completely linked, to the point where I think that the DNA revelation when I turned 40 was very much a catalyst for the disassembly that was happening in my neurology at the same time. And I think many — anyone listening that knows about vestibular disorders, especially ones that are neurologically related instead of within the ears, can often be heightened or triggered by extreme states of panic. And I was definitely going through a protracted panic attack and a real disorientation to who I was and who I had known myself to be for 40 years. So while I don’t think it was a direct link, I think there are a lot of factors that were happening. It was definitely a piece that pulled the rug out from underneath me and quite literally created the sensation of living on water, which is what this Mal de Débarquement that I have — that is the actual symptom. The experience of it is living on water. So you can’t really disentangle the illness from your life circumstances and it’s all part of the same fabric.
Absolutely. And I don’t know if that’s always the case. I’m not going to say that everyone gets an illness because something psychological shifts in their life story. But for me, it did play a huge role. And I think, unfortunately, because of that, I also wasn’t diagnosed for five, five and a half years. And a lot of that was because of the multifactorial events that were happening. Based on which doctor I saw to try to figure out why I was so dizzy, they were either looking at the psychological issues and doing trauma work and brain spotting and everything under the sun, or concussions on the other end of the spectrum. So it made it very difficult to diagnose what was going on.
Joshua Doležal:
All of the people I’ve interviewed so far are doctors, and in a doctor memoir, doctors write about patients. The patients don’t always have the chance to write back. Your book is coming from the other side of that. When you’re going through your diagnostic journey — years of dizziness with no explanation and so on — I’m wondering if you really struggled with other people’s stories being projected onto you. I know with neurological conditions, it kind of literally is in your head, right? And there’s a kind of condescending form that that takes. So did writing Unfixed feel like you were reclaiming the narrative for yourself instead of being a character in someone else’s story?
Kimberly Warner:
Yes. And I’ll say that when I started writing this, it was 2018. So this was still pre-diagnosis, but it was also right on this precipice of me being so tired of pursuing cures. So I was resting in this place of trying to, like you said, reclaim all of what had just happened to me — including the DNA discovery and the dizziness and all the subsequent things that happened because of that. The loss of job, the loss of friends, nearly the loss of my relationship. And I was trying to just piece it all back together for myself. This was not intended to be something to be read by the world. It was very much just, let’s get this down on paper as much as I possibly can so I can remember the details.
So as you know, when you read this, there’s certainly trauma in this, but there was also so much magic and love that was happening throughout this. And that was a really important part that I didn’t want to forget. And so in the writing, I think I was trying to weave those two together and maybe find a way for them to coexist, because I knew that what I had been doing — which was just chasing cures and living as if I couldn’t be happy unless I was fixed — was not working anymore.
Joshua Doležal:
One of the frustrating parts of your condition is that it’s invisible. I think you’ve even used that word in some of your advocacy. So what you experience is constant dizziness, this sensation of, like you said, being on water. But you don’t look sick. And I don’t know if this is true — correct me if I’m wrong — but when you’re in an examining room, everything has to be kind of reduced to puzzle pieces. So it’s the tests, the clinical signs, lab results, imaging, and so on. So I’m wondering, in your case, what’s lost when a doctor can’t see what’s happening? They can only see what’s measurable. And what did your doctors miss because they were looking for the wrong things or just not able to see?
Kimberly Warner:
Oh, gosh. Well, I actually just finished another illness narrative, and it’s called Dizzy. And of course, I picked it right up because this woman is my age. And I had to email her and say, we have siblings because our stories are so similar. She was dizzy for 18 years. And the parallels between her story and all the other vestibular patients that I’ve talked to around the moment — because there is lab work. There are classic vestibular tests. And you will, first you’ll get the Epley maneuver for the crystals in your ears. Then you’ll go for extensive two-day lab testing in the vestibular lab that’s designed to stress your vestibular system. But so many of us, especially with the central nervous system disorders, will go back to get the results after this hopeful duration after the test and — oh my God, they’re finally going to figure out what’s wrong with me. And the doctor hands you the paperwork and says, congratulations, there’s nothing wrong with you.
And that is the most disheartening experience. And I remember that moment. I had already been living with it at that point — I think it was eight months. And I thought, I mean, I was going day by day thinking, I can’t live another day with this. Counting the days to his answer for me. And then for him to pat me on the back and high-five and, you know, you’re great. What they’re missing is that we’re not. And this was a dizzy specialist — a dizzy neurologist. And unfortunately, a lot of the central disorders are the last to get diagnosed. So when they’re checking the boxes, they’re going for — he eventually diagnosed me with cervicogenic vertigo, which is structural. He was saying it was in my neck. They want the quick fixes and they want to be able to medicate.
And so I know there are so many vestibular patients out there that have to go through 20, 40 doctors before they end up getting to the one that’s going to address the central issues. And those are a little bit more complicated. And it’s tricky because it is in your head.
And often they are treated with SNRIs and SSRIs. But the patient has to be coached enough to know that the doctor’s not saying you’re crazy because he’s giving you an SSRI or an SNRI. He’s not saying, oh, you’re making this up. He’s saying that the world is too much for your brain. Your brain is acting like a scared cat right now. And we need to dim the lights and we need to turn the volume down. If someone had told me that when they handed me the prescription for diazepam, I would have said, yes, that makes sense. But if they hand the diazepam to me and they say, you know, I think you have too much anxiety — well, of course I do right now because I can’t even walk across the street. So I think a lot of it just comes down to how it’s communicated.
Joshua Doležal:
I wonder if you might reframe that phrase. You know, it’s not in your head — it’s in your head and your heart and your nerves. I mean, it’s in your life, basically. And I want to ask you about your training because it’s a little bit non-traditional. You trained in both Western pre-med but then also in classical Chinese medicine before you turned to the arts. So that’s kind of an unusual combo. And in the book you write about the body knowing truths that language can’t hold — which is ironically how I got into medical humanities, right. The body knows things. It’s not all language. So I’m curious how that dual medical training shaped how you think about illness, but then also how you told this particular story.
Kimberly Warner:
Oh, well, instantly — thank you. Classical Chinese medicine is fascinating because so much of it lives in metaphor and symbolism, even down to the elements — categories of illness and any sort of medicine or herb is either earth, fire, metal, water, air. And it makes me think of — so the way that I experience the dizziness, like I said, is as if I’m on water. In Chinese medicine, there are lots of different ways that they might look at this, but let’s look at water simply as a kidney and bladder function — not in the classic organs, as in kidney and bladder, but what those organs represent in the universe. And there’s a lot there to do with death and grief.
And what was happening for me when this experience of being at sea started, I was reliving another big seismic shift in my life around the loss of a father. I had lost my adopted father — the one that raised me, who I thought was my real father — when I was 18. But then here’s this other father that appears through a DNA test and, through some discoveries, he’s no longer available either. So there was something on a cellular level for me that was happening in the realm of grief. And I can’t separate the physiology with the metaphor. And I feel like that is a perfect place where Western and Eastern medicine can come together and can actually be really informative.
And the physicians that are able to bridge that, I think, can penetrate a lot deeper into the true experience of what the patient is going through. Because we can’t separate mind and body. The body certainly does lead the way with symptoms. And I know for myself, my body was leading the way with symptoms. Heightened anxiety — I had never experienced anything like panic attacks before all of this was happening. What my mind was trying to do was to bring certainty into the experience. And the way I was doing that was by manically asking everyone how I should be experiencing this story. I would just tell strangers about what was happening to me in my life. And what my body was telling me was, this is too much and you need to slow down and process this information. I have said I even would have done really well had I been sedated, because I was becoming manic with the information and some gentle sedation so that my nervous system could catch up — this influx of information that was coming into my life that was changing the bedrock of my being — that would have been really, really helpful. So yes, I think there’s a real sweet spot between Western medicine and Eastern medicine that bridges metaphor with physiology.
Joshua Doležal:
And part of the Eastern tradition, as I understand it, is ceremony. So there’s nothing ceremonious about going to the hospital. It’s almost as disembodied, ironically, as it could be. I was speaking last week with Damon Tweedy about what happens when someone who is uninsured or underinsured goes to the ER looking for help. If they took some pills, you know — a cry for help, I need help, I’m a danger to myself. Well, if you don’t have the resources and you’re not in the bourgeois club, then you get escorted in handcuffs to the state hospital. How does that help your mental, spiritual condition? It’s like the worst possible ceremony, the worst ritual that you could undergo.
You’re reminding me of one of my favorite novels, Leslie Marmon Silko’s Ceremony, which is about a war veteran. It’s a classic. I love teaching it. But this half-Laguna, half-white man comes back from the war — World War II — and he’s trying to tell his doctors that he feels like white smoke, and he’s narrating his own story in the third person. So he’s that detached from himself that he’s narrating as if he’s outside of his own body, but he sees his body as white smoke. Which is a perfect way of capturing that kind of shell shock — though it’s not shell shock. It’s not PTSD. It’s a spiritual illness that he’s carrying. It’s the image of himself and the Japanese soldiers, the kind of kinship between indigenous people and other Asians that he’s seeing and wrestling with. And a pill isn’t going to solve that. Four white walls in a hospital are not going to be the right environment for that. So it’s through traditional ceremonies that he finds his way back, and he has to kind of sing his way back. He has to find the story. He has to go to the place where uranium is mined to actually complete the ceremony for himself. And that’s just not how Western medicine thinks at all. So when you’re dealing with grief and you go to the hospital, there’s no ceremony for grief. It’s just sort of like, well, get over yourself — or here’s a pill to sedate you or something. But ceremony activates the body and the spirit traditionally. And I just don’t know that Western medicine has any idea what to do with that.
Kimberly Warner:
No, but it’s interesting. I’m sure you’re familiar with Dr. Rachel Naomi Remen. And she thought when she went into medical school and became a clinician that she could cure everything. And what she realized after years and years of practice is that some things can’t be healed. They just need to be held. And I love that so much. And that’s, to me, connected to what you’re saying around ceremony, because ceremony is a place to hold. And sometimes — and I think narrative medicine does a great job with this too — sometimes the healing is in the holding. It truly is.
And I will say that for myself — I’m still dizzy sometimes. But I have been tremendously healed on this journey because I feel that while I didn’t have physicians that were holding me, I feel like I learned to hold myself in the dizziness. And that is a kind of healing that is lasting. It’s a deeper healing. It’s a spiritual healing. It’s something that allows me to be able to live with this experience of dizziness and still feel quite peaceful and joyful. Is that the role of the doctor? I don’t know. But I think that there are physicians out there that are able to recognize that maybe their greatest power isn’t in finding the physiological cure, but to still be able to hold the patient.
Joshua Doležal:
A commenter noted: healing is not always a lack of symptoms. I mean, really, you have to hurt to heal. That’s true of grief. If you don’t hurt, your love wasn’t real. The more deeply you love, the more deeply you hurt. And that’s something you have to feel, and there’s no way to release it except to feel it. And that’s not something that there’s a lot of patience for in traditional medical contexts either.
Kimberly Warner:
Yeah. And unfortunately not. My father — the one that I write about in the book — he was a heart surgeon. And I think he really was an unusual heart surgeon in the eighties because he wanted to access that deeper energetic healing with his patients. His favorite time wasn’t when he was cutting them open. It was when he was doing rounds. And he was a big, six-foot-six physician, but he would kneel down at the patient’s bedside and just rest his hands on them. And that was his favorite, favorite work. And I remember even as a daughter going around the hospital with him doing his rounds. And I could tell that there was healing happening in just that touch and in just that contact — the wordless contact even. I think some of this healing really happens beyond words.
For me, writing the book was — even though it’s a book of words — I think largely the healing is what was happening in between the words. So much so that the last poem in the book talks mostly about how I am less the words and more the page. And to me, that is often where the real healing comes from. Kind of like what you were saying at the very beginning about the white space and the unnamed. Maybe the unnamed is really where the healing is coming from.
Joshua Doležal:
The thing not named, yeah. Part of what’s complicated about your condition is that it’s not fixable, really. Unfixed is the title of your book. And it’s a little bit unusual in that regard from a typical illness narrative. Because an illness narrative usually has — like the inciting incident, it’s like an episode of House M.D. I know that’s an obsolete show now. I’m dating myself by mentioning it. But in a House M.D. episode, there’s somebody in their normal life, and then they have a seizure, and that’s the beginning of the illness, and then you have to figure out what the diagnosis is. So there’s an onset, there’s a kind of crisis that leads to some kind of diagnosis, whether it’s satisfactory or not. And then it ends kind of one of two ways — either you recover or you don’t. Maybe you learn to accept that you’ll never recover. In some cases, you die, like Christopher Hitchens in Mortality. That’s the end of that illness narrative — death from cancer. But your book kind of resists that arc. And I hear the title, Unfixed, as a kind of defiant — I don’t know if it’s a thesis exactly, but it’s a kind of defiant message.
Kimberly Warner:
Philosophy, yeah.
Joshua Doležal:
Yeah. So I’m wondering if refusing resolution in the book is a craft choice, a philosophical stance as you’re saying, or something your illness forced on you. If you had been cured, would you have written a different book, do you think?
Kimberly Warner:
Yeah, this is a life lesson for me. And I can honestly say I’m glad that I hadn’t been cured because — well, first of all, I love one of my favorite bits of feedback that I get from people that read this book: they sleep really, really well when they finish. And at first I was like, what? Like, is it boring?
Joshua Doležal:
Yeah.
Kimberly Warner:
And there’s a nervous system reset is the way it’s been communicated. And I think our culture, our collective, is needing more of this nervous system reset. I couldn’t have written that nervous system reset had I been cured because then it’s just following that nice linear arc of, you know, the hero needs to get to the resolution. And I finished the one I just mentioned, Dizzy, the memoir. And I was a little bit re-traumatized reading it. And it was fun and it was gripping and when’s she going to get the answer and all of that. But it engaged me physiologically in a way that felt so much more stressful. And the way I had to — and where I was even when I wrote this book was a deeper settling with, and a deeper allowing with, the experiences that I was having. And I did not know that when people read that, that’s what they would be picking up. But it’s really cool to hear that there is kind of like a nervous system reset in people. Finally, they get to let it all go. They get to let down that struggle, that achievement, that self-actualization — all of those things that we are trying to achieve — and they get to just be.
So it wasn’t a choice. I didn’t think that that was going to be an experience that my readers would have. I wasn’t even writing it for readers. But it has been my experience, and that’s lasting no matter what now happens — even this last month, since I’ve had some higher dizzy symptoms. I feel just kind of peaceful in the midst of all of it. So I feel like those are some good lessons for all of us right now in our overstimulated population.
Joshua Doležal:
That’s an interesting effect of the book. And I wonder if you could give us a taste of it. We were talking about — there’s a chapter that we flagged that we could possibly read a bit of. I think this is the diagnosis, or it’s kind of where you understand that there’s no cure.
Kimberly Warner:
Yeah. How much would you like me to read?
Joshua Doležal:
Chapter 29 is the one that you mentioned. Why don’t we start on page 184, beginning of late summer, and kind of on to the middle of 186, so a couple pages.
Kimberly Warner:
Okay. My beginning on Chapter 29 is “Reality Strikes: Damning Red Inks.” Do we have different page numbers?
Joshua Doležal:
Well, on 184, the last full paragraph here begins —
Kimberly Warner:
Oh, late summer. Got it. Yeah, yeah, yeah. Thank you.
Joshua Doležal:
So give us kind of the lead up to this.
Kimberly Warner:
Yeah, so this was the dizzy doc that I was mentioning earlier that eventually diagnosed me with cervicogenic vertigo. So at this point, the early dizziness had started in February just erratically, and then it was consistently dizzy by May. So May, June, July, August, September. And those months were just — hell on earth. I did not know up from down, constantly being pulled in these sensations of being pulled in different directions, like walking in a bouncy castle, the sidewalk dropping out, to the point where I just couldn’t — I didn’t leave the house. So I was desperate.
[Reading from Unfixed, Chapter 29:]
Late summer, I finally meet with a neurologist, Portland’s leading dizzy doc. I enter his office, certain he has an answer. Hope is hard. I’ve been carrying it in my pocket for months. The possibility of this doctor not having answers is inconceivable and crushing.
After listening to me convey, for what feels like the hundredth time, all my bizarre experiences and sensations, he orders two days of extensive testing at Legacy Hospital’s vestibular lab. “It’s not going to be fun, I’ll tell you this right now, but we may get some answers.” I nod obligingly. I’m quick to tell a doctor he’s right or she’s helping me even when I feel like I’m dying inside. I project all my absent father issues on male physicians. Maybe he’ll think I’m so smart and so sweet that he’ll go the extra mile to make sure I get better. He’ll look forward to the day when he sees me out in the world succeeding and think, I helped her. He’ll be proud of me.
But he was right. Two days of vestibular tests designed to put maximum stress on all the visual and auditory connections to one’s inner balance are not fun. He was also right to use the conditional verb may, leaving room for no answers at all.
“Kim, you passed your tests with flying colors. Your vestibular system is working great.”
Ordinarily, this kind of daddy high-five would projectile shoot glitter from my eyes. But instead, I am deflated and in disbelief. So, that’s it? But what do I have? Are you saying nothing is wrong with me? Maybe I haven’t conveyed how dire this is. Maybe I tried too hard to look okay, to be pleasing. I can’t go on like this. Does he think I’m making it all up?
“You may have cervicogenic vertigo.”
Cervic — what? It takes me a moment to realize he’s not talking about my vagina.
“I’ll prescribe you 12 sessions with a great vestibular PT. She’ll work on your neck. And you may feel some improvement. And if that doesn’t work, we can start drug trials. Benzos, anti-seizure drugs, anti-anxiety drugs. They all have side effects that you’re not going to like, though.”
Contempt smolders inside me. You may feel some improvement. You don’t even have a definitive diagnosis. I can barely hear him anymore as he rattles off drug names, possible complications, dependencies. He starts to read my face. I am no longer speaking, only shuddering. With an attempt to comfort me, he says, a tincture of time.
I stand up, the floor trampolines. He reaches out his hand, and my misinterpreting heart leaps towards it — a gesture of warmth and support delivered on a scribbled prescription pad for diazepam.
“The body heals itself, and doctors take the credit,” he chuckles as I walk out the door.
I hate his flippant remark and the kernel of truth that suggests. Time can be the ultimate healer, at least in the most broad sense of healing — the kind of healing, or post-traumatic growth, that may not cure bodies but can sometimes heal spirits. A person becoming more virtuous, more brave, more connected because of illness or tragedy. But I don’t want my spirit to grow. I want to be fixed.
I wobbled home thinking about his parting words. If this is true, are all treatments, protocols, and dollars spent along the way just buying time? Time is also the ultimate killer. What if time makes this worse? Not everyone has access to resources and support. Sometimes time destroys us.
Joshua Doležal:
Thank you so much. So it’s indeterminate. And instead of trying to resolve that or tie it up in a bow, you just kind of leave us in that predicament — which I think is a powerful place. We have to finish that story within ourselves.
Kimberly Warner:
It’s a very true place, too. I’ve been working with Unfixed Media now since 2019, and I’m constantly working with patients and their stories. And most of us don’t have cures. It’s interesting how the medical system is designed to — you know, fix things — it’s emergency care. We’re really, really good at emergencies. And largely, a lot of people are walking around with things that can’t be fixed. And there’s not a lot of narrative around that in media. And so what it does, I think, for patients is it leaves us feeling isolated. And then when we read stories or we watch films that talk about that isolation and that unfixedness, the uncertainty, there’s a settling that happens that’s like — oh, my God. Like I said earlier, maybe I won’t be healed, but there’s a new emergent self that can still live her life within this.
One of my favorite people I’ve worked with over the years — we started in 2019 doing a documentary — and his name is Dylan Shanahan. He wrote Liberation of Being. Lives with ALS, very, very late stage. But even when I met him in 2019, he wasn’t able to communicate with his mouth, only with his eyes. A young person. A beautiful gentleman. And I helped him write his memoir a couple of years ago. And he is quite a shining example of how that life force can continue to thrive and exist within an extremely compromised state.
Joshua Doležal:
You mentioned your films. Maybe we could end there since we’re getting close to our time. So you’ve made films that you screened at Harvard Medical School. You’re doing films as part of your advocacy work, and you’re on advisory boards that really are contributing to that advocacy. Do you think illness narratives like yours actually change how medicine is practiced, or is the power of it mainly for patients to feel solidarity and that nervous system reset that someone gets from reading your book? Is that for other people in your shoes, or is that actually something that you think doctors and other caregivers will absorb and then change?
Kimberly Warner:
Yeah, the goal would be to get these in medical schools. I think patients seek this stuff out. Even with social media, they can find it now. So that’s great. But to me, the real work is getting the films into medical schools, getting them into curriculums, getting them in front of physicians that are already practicing. My episodes are all eight to ten minutes long. It doesn’t take long for a physician to really just grasp a sense of humanity within the voices that I feature in these stories. And I really stay away from, let’s talk about what your treatments are and all of that. It’s more the deeper themes around hope and purpose and meaning.
One of the episodes towards the end of the first docuseries asked the question: would you give up everything you’ve learned since your diagnosis in order to be healed? And there was no right or wrong. I wasn’t looking for some sort of glitter rainbow from people. And it was a wonderful mixed bag. But a resounding no came from a lot of people, including Dylan — this gentleman with ALS — because he had gotten to the point where he felt like ALS had become his ultimate teacher. And he wouldn’t want to take away those lessons.
So I think that kind of level of humanity — when a physician can, in 10 minutes, they’re just looking for bullets and ways to attack what is coming in at them. But if they can hold a little bit more of their patient’s story, I think it just opens the potential for an additional kind of healing if they are unable to heal them with the magic bullet.
Joshua Doležal:
I know from speaking with physicians that some of them are fighting the common enemy of the patient, which is the corporate bureaucracy. So it’s not that they’re unconvinced of the need for more healing. It’s just that they’re not given opportunities to spend that quality time or show anything that’s not a billable hour — or they just can’t, within the system that they operate, perform that way. And that seems especially harmful in the case of chronic illness because it’s the contextual things that make it worse or even spark the onset of it. And so it’s more of the contextual human story that a doctor would need to be able to respond to. And yet the constraints of the 15-minute visit, or if they are running behind all day and they can’t get their 40 patients in because some admin is telling them they have to do that — I think sometimes the culture and the corporate environments that are created within hospitals work against that too.
Kimberly Warner:
Yeah, and I think, to me, there’s a solution to that. If 10 minutes is all they’ve got, have resources for your patients. Give them your time for those 10 minutes and then hand them a resource — with a link to one of the Unfixed docu-series videos or for, you know, my dizzy doc — hand them the pamphlet to the Vestibular Disorders Association that’s literally in the same town so I can connect with support groups and additional physicians that are working within — I mean, have resources. We live in a world where there are so many resources. And I think maybe that’s a lot of extra work for the doctor, but maybe there needs to be an additional staff member that just gathers resources for those patients, because a lot of that time is just going to be taken up by gathering data and writing a prescription. But if the patient’s sick, they’re going to go home and they have got lots of time. I guarantee you they’ve got lots of time. So give them something to do with that time.
Joshua Doležal:
Tell me a little bit about Unfixed Media. So you’re telling other people’s stories — are these oral histories? Are they interviews? What would someone see in your films? Can they go somewhere to watch some of these?
Kimberly Warner:
So there’s a great channel called the Disorder Channel, and that was started actually during the pandemic by two gentlemen that were running a rare disease film festival on the East Coast. And then because the festivals had to be shut down, they started a channel, and it’s accessible through Amazon Fire and Roku. But I also have everything for free on YouTube and on the Unfixed Media website.
It originally began just as a documentary, a feature documentary. But like I said, we started filming in 2019 and the pandemic happened. So I was three subjects down and then we had to shut everything down. So I had 20 individuals that were already signed on and I thought, let’s just use smartphones — I’ll send them equipment and see what we can get done in their living rooms and bedrooms. And it ended up being such a successful model for patient narratives because I found that they were actually even more comfortable than the ones that had the film crew in their living rooms. And very vulnerable. And so we filmed for two years where they, every month, would answer a question I had. And then they were edited into a docuseries, a two-year-long docuseries. And then that snowballed into another vestibular series through the Vestibular Disorders Association. And then another one through Solve M.E., which was all about myalgic encephalomyelitis and long COVID-19. And then I did one through Harvard Medical School and Dr. Annie Brewster that was on all mental health. So it keeps going — every year I sort of respond to what organizations might feel like there’s a need for this type of education. There are always willing ambassadors and patients to participate and support. And it’s really easy. It’s been an easy way to gather these stories.
And I’ve always — I’m very picky about how they’re edited. So they’re beautifully done and staged as well as they possibly can. And ultimately someday — I’ve actually applied for a Guggenheim grant and I’ll find out next month if I got it — but I would like to go back to those original 20 subjects, or at least a smaller pool of those subjects, and finish the feature documentary. A little bit like the 7 Up stories, the films that were done over a period of, God, I don’t even know, 49 years. And see how these subjects are doing seven years later, because chronic illness is chronic. So how are they doing seven years after our first interviews? So I’ll be doing this for the rest of my life.
It feels really satisfying to bring these stories into a little bit more of the general audience. But I’ll tell you, it’s an uphill battle to get people to watch it. I think we have to find our niche populations, and medical schools would be a great place for that. But a lot of the time, as soon as somebody says, here’s chronic illness, they’re like, no, I don’t want to hear it. Sounds sad. And the irony is that so many people, when they watch these, they feel uplifted. They are stories of human resilience, mostly.
Joshua Doležal:
Absolutely. Best of luck with your grant. And we’ll end with a plug for your memoir, Unfixed, which is available from Empress Editions. And I’ll point everyone to your Substack, unfixed.substack.com. I’ll put the links in the show notes.
So that’s the thing not named for today. Thank you, Kimberly, for sharing your time and your book with us.
Kimberly Warner:
Thank you so much, Joshua. Take care, everyone. Bye.
My 2026 series explores medicine and storytelling. Come think with me about how narrative bridges gaps between doctors and patients and the public, and why we need writers like Kimberly now more than ever.
Paid members get two in-depth essays each month, on-demand interviews, and full archive access.
