You’re two people in a situation, and you don’t know each other, so you don’t know the best way to communicate yet. You always hear those blanket statements like, “If you see a bear, do this,” but every bear interaction is different. The bear is different. It’s not a blanket thing. We don’t have that doctor that we have this lifelong relationship with, and so we don’t know them as people, and how to communicate with them is so hard.”
—Rachel Weaver, author of Dizzy
Today, on “The Things Not Named,” I speak with Rachel Weaver, author of two novels and a memoir, Dizzy, about living with undiagnosed vertigo for nearly two decades.
Below is an edited transcript of our conversation on Substack Live.
Transcript:
Joshua Dolezal:
Welcome back to The Things Not Named. I’m Joshua Dolezal.
Willa Cather said that the presence of the thing not named gives high quality to literature, and this year I’m applying that idea to medicine, asking how we might be more attentive to what goes unsaid in the clinic and popular culture, and in the experience of illness from the patient’s side.
My guest today is Rachel Weaver.
Rachel is the author of three books, a novel, Point of Direction, which Oprah Magazine named as a Top Ten Book to Pick Up Now. Another novel, The Last Run, about a struggling single mother who risks everything to save her father’s fishing boat. And the memoir, Dizzy, which is our main topic today, about a debilitating illness that went undiagnosed for 18 years, even after seeing 40 different specialists.
So that book is part medical mystery, part cautionary tale about American healthcare, and it’s an inspiring story about perseverance and learning to live with life’s uncertainty.
A fun side note. Rachel and I both worked for the Forest Service. I was a firefighter and wilderness ranger, and she was a field tech in Alaska studying bears, raptors, and songbirds.
She now teaches at Wilkes University’s low-residency MFA program and at Lighthouse Writers Workshop. I became aware of Rachel’s work because of her connection to Columbia University’s Narrative Medicine program, and if you caught my conversation with Kimberly Warner, Rachel also came highly recommended from Kim.
So Rachel, thanks for joining me today, and welcome.
Rachel Weaver:
Thank you. Thanks for having me.
Joshua Dolezal:
So you’ve done a lot of interviews about this book. Is it your most recent project then?
Rachel Weaver:
Yes. I wrote Dizzy as I was also sporadically working on the novel, and happened to finish them each within the same year, and then they sold to two different publishers within the same month. So last fall, I was working on the final revisions for both. So in my mind, they’re sort of both equally my most recent project, but Dizzy is the book that I started most recently.
Joshua Dolezal:
I didn’t mean it to be a trick question, but I know most writers are working on multiple things at once.
Rachel Weaver:
Yeah. I do have another book outlined over here on my wall, my next novel. I’m about 100 pages into that one, but it’s pretty messed up currently.
Joshua Dolezal:
Are you superstitious about that? You don’t want to talk about it till it’s done, or can you share anything about it?
Rachel Weaver:
Yeah, it’s something I’ve never done before. It’s not placed in Alaska, first of all. And it’s just about a group of women that are doing all sorts of fun things. I don’t really know what it’s about yet. I’m in that phase of writing where I just am sort of seeing where it goes and what catches my attention and what’s viable for a full-length novel and what’s just, like, me having fun and maybe won’t turn into a novel. So it’s super early stages with that one.
Joshua Dolezal:
Sounds fun. I can’t help asking about this because I think we both do a little bit of book coaching or teaching. I know you teach in a couple of these programs. And so I’m always curious how people design books, because people hire me to help them do it. I’m of the school that if you’re just a pantser, unless you’re a special kind of person, you’re gonna get stuck or get lost at some point. And I have really no appetite for the plotters, like the James Patterson types who outline everything down to the... You know, I sometimes wonder what he is discovering when he actually writes the thing, because it’s so minutely outlined. So I prefer a middle space where there are some broad strokes, or there’s some big turning points that are outlined. I know I gotta get to here and there and finally to this big all-hands-on-deck moment, and there are some problems to wrestle with along the way.
But how do you do that? It sounds like you’re more of a pantser. Is that fair?
Rachel Weaver:
I talk about this a lot in my teaching because I feel like there’s actually a lot of animosity between people that identify as pantsers and people that identify as plotters, and I think that all of us have... instead of fighting about which one’s better or worse, I think it’s actually important to develop both those muscles, or both those parts of our writing brain, right? The process of discovering what our own individual process is, is figuring out when to invite one of those, either the pantser or the plotter part of yourself, to the party, and when to kick that one out and invite the other one back, right? So I think it’s really a matter of embracing that just sit down and write to discover part of our writing brains for a period of time.
But now 100 pages in, I’m like, “Oh, what is this?” Right? What am I doing? So now it’s time for me to embrace that plotter part of my mind, not necessarily to plot out the whole thing, but to consider some of those big picture questions like, what am I really writing about? What are all these people trying to do? What are their obstacles? What’s at stake? How can I shift things around to amplify those core storytelling elements? And then make some of those decisions, take those decisions back over to the pantser part of me, and then have fun from there, right?
But then come back, and I have found that balance for myself. But I think some people like to spend more time in one versus the other. But whichever one you kinda want to avoid, I feel like that’s probably the one to embrace a little bit more.
Joshua Dolezal:
That’s fair. Yeah, I tend to find a middle path that works for me that has both a plan but also room for discovery, but I like your idea. Maybe I’m too hostile to the extremes.
Rachel Weaver:
Yeah. The most important thing always is just to figure out what works for you. How does your brain want to work, and then how do you corral it into being the most productive? So I think it looks a little different for everybody, but I do think that everybody has both those parts. I think both those parts are important in writing a book. So it doesn’t get prescriptive, but it also doesn’t get super unwieldy and overwhelming, and then you just don’t work on it because it’s too overwhelming.
Joshua Dolezal:
For sure. Well, I gave everybody just the briefest synopsis of your book, so I’m curious if you would just fill in some of those gaps. If someone hasn’t read Dizzy, what’s it about? Why should they read your memoir?
Rachel Weaver:
Yeah, it’s a braided memoir of my time working for the Forest Service before I was sick, working in the backcountry. I was mostly working on a big statewide project, or I should say a Tongass-wide project, in Southeast Alaska to determine appropriate bear tag limits. So the first step in that process was figuring out what is the bear population size on all of these remote islands. So I was working on that study along with lots of other random studies that the Forest Service had going on in the time that I was there. And so there was a lot of interactions between me and the natural world, me and bears, all that stuff.
So that’s one thread of the story. And then the other thread is my time as a pretty average person trying to navigate the medical system. One thing that I’ve noticed over my time reading a lot of illness memoirs is that they’re often written by people who have a lot of things that I didn’t have, right? Like either they are doctors or they have a huge financial net security. I was a pretty normal 30-year-old, I would say. I had jobs that gave me insurance, but I also was moving jobs sometimes and I was caught in that web of preexisting conditions back when that was a thing.
So it’s really the story of me trying to navigate everything that is thrown in front of a pretty average person who suddenly finds themselves with a chronic illness and on top of that, something that was very hard to diagnose. I just woke up dizzy one day, debilitatingly so, and it didn’t go away for 10 years, and then it got a little better, and I was given a diagnosis of vestibular migraine at that year 10 mark, and things started to improve from there, but it never fully went away, and it was never something that was not very present every day for me, until the 18-year mark.
So the book is a thread of those two parts of my life. And at first I was like, “How do these things relate? I have no idea.” But over time, I realized that they relate because the book is really about power dynamics and how that plays out in the natural world and how that plays out in a clinical setting and this life full of uncertainty and really a lack of agency in both those settings.
Joshua Dolezal:
Well, it’s interesting you said you woke up just suddenly ill, and then it was years of just not being able to find your way back. And it’s striking to me, both doctors and patients write about this kind of threshold moment where you enter the world of the ill. Christopher Hitchens called it Wellville and Tumortown. It’s like you belong to two different countries almost. And he uses a deportation metaphor. You’re involuntarily deported to the land of Tumortown if you have cancer. Another writer was talking about this moment with a patient where she knew she had to share this diagnosis that would be terminal, and she described it as the yellow brick road of illness, where there’s just a departure from what we think of as normal life. That’s a bad word for it, but the healthy and the sick, and you kind of enter this alternate reality. So what was that like? You built a family, you had kids, you were doing all these things that are part of what everyone who’s healthy was doing, but you were doing it from this other country in a way. Is that accurately captured?
Rachel Weaver:
Yeah, I think so. I’ve been trying to figure this out in the time that I have felt better. So in the last three years, my brain has started working much more effectively. One of the big symptoms I had was this so thick, such a thick fog brain. It was very hard to think through stuff. So in the last three years, I’ve been thinking about this a lot because I don’t really know why I kept doing all the things. There were very clear things that I wanted to do in my life and the dizziness was not getting better, my health was not improving, but I never really thought that I wouldn’t get better.
Even though everything was pointing in that direction, and many clinicians were saying that, you know, this is something we don’t know what it is, this is just something you’re gonna have to live with. But I never accepted that for some reason. I just always kept thinking there’s gotta be someone that has an idea of what this might be. And so I kept making these decisions that if I had fully accepted that I would be debilitatingly dizzy for the rest of my life, I probably wouldn’t have done. But I just kept doing them thinking, “Well, I’ll get through it, and then eventually I’ll find someone out there in the world who is thinking about migraine in a different way, and can help me improve my situation.”
And I don’t really know why I never fully accepted that I was a member of that other foreign country, right? I just kept being like, “No, I am over here. I’m gonna get back there.” And I don’t really know what that is. I don’t know that that is all that common. And it created a lot more hardship, for sure, for myself, because I kept getting myself in these situations where I had these jobs and then I had these kids, and it was very difficult to do all of that from a place of chronic illness. But at the same time, I showed myself that I could do it. So there’s that.
Joshua Dolezal:
Well, one common theme in illness narratives is the impact that illness has on identity. So you think of yourself a certain way, and I’m not the kind of person who ever gets sick, or whatever myths you tell yourself, and then you take a real blow to your sense of self when there’s a mysterious condition. You kind of doubt yourself sometimes. How much of this is in my head versus something that’s physiologically real. Sometimes caregivers will doubt you, and that feeds some of these questions. So one way that I was reading the two braided storylines is there’s this self that comes before the illness that’s pretty clear and pretty solid, and there aren’t a lot of questions or ambiguities. You know who you are, and you’re courageous, and you’re a risk-taker, and you have a stiff upper lip about things. And then there’s the self that’s bewildered and suffering and trying to figure out what the hell’s going on with this condition and wrestling with, you’re not sure of yourself as much. All these things that you would think would not be part of a woman who works in Alaska are suddenly part of your identity. So as I see the braided strategy, it’s partly to resolve that tension between who you were before and who you were in the middle, and then maybe hoping to bring those back together and who you are, who you come out the other end as.
Rachel Weaver:
Right. Yes, absolutely. In fiction, when I teach fiction, I always talk about how you want to create a situation that is particularly hard, a journey that’s particularly hard for this particular person. And I feel like that’s exactly what happened to me. I had this sense of myself that I can handle a lot, right? I’m resourceful. And that resourcefulness became a huge part of my identity, I would say, in Alaska, just because you need that in the backcountry of Alaska often. And then I land in this clinical setting, and it doesn’t really help me for years and years. It takes me forever to figure out how to use that resourceful part of myself to help myself, because I was so diminished and vulnerable in a way that was really hard for me in particular. I mean, it’s hard for everyone, obviously. But it was especially mind-boggling, I think, to go from one extreme to the other so quickly, just overnight.
Joshua Dolezal:
Well, I don’t know if you’d agree with this, but it seems to me like the things that were your strengths in the backcountry are actually your weaknesses in the examining room. So if you’re somebody who doesn’t complain because you’re in a traditionally masculine space, you don’t want to be seen as somebody who can’t hack it or something, then you kind of suffer in silence. That’s also how young men learn how to come of age in places like that. You don’t complain. You just put up with whatever you’re dealing with. But that doesn’t work in the doctor’s office because you need to be able to advocate for yourself. You need to be able to admit when something’s wrong. If you pretend that things are okay, or if you don’t push back when the diagnosis is wrong, then you just don’t get help. So did you feel like that part of yourself was really working against you when you were trying to get a diagnosis?
Rachel Weaver:
Yeah, for sure. I was going to so many different doctors. I was getting referred to lots of different specialists, as people were trying to figure out and basically just rule out a brain tumor and something wrong with my spine and all the things. Dizziness can be caused by so many different things. So I was just cycling through doctor after doctor and I would get one opinion, one neurologist would be like, “Oh, no, there’s nothing wrong with your brain. You’re fine.” And then I would be like, “Well, I better get a second opinion from another neurologist.” So I was going to multiple people within each discipline. And then I also was trying chiropractors and acupuncturists and all things. So I had lots of opportunity to just practice.
And yes, I felt very much like the me who was showing up in these clinical interactions was not getting anywhere. And so I would try different things and I would try pushing back more and see what happened. And then I would try... Like, I never cry. I just couldn’t make my... I was like, “Oh, I should just be able to cry right now and make someone understand how bad this is.” Because you walk in and you say, “I’m dizzy,” and people are like, “Okay.” I mean, that could be a little or that could be like, “Whoa, I gotta hold onto walls.” So I would try describing it according to metaphors, and then that wouldn’t work. And then I would try describing it like, “I cannot walk down more than two aisles at the grocery store before I start to be so dizzy I have to go back outside and sit in the car.” And so I would try to make it as concrete as possible. And I just was trying all these different ways of communicating to try to figure out, “What works?” I couldn’t figure it out.
But eventually, I don’t know that there is any one way. In the end, I think what it came down to is that you’re just two people. You’re two people in a situation, and you don’t know each other, so you don’t know the best way to communicate yet. It’s the same, you always hear those blanket statements like, “If you see a bear, do this,” but every bear interaction is different, right? The bear is different. Whatever the situation is is different. How hungry everybody is is different, right? It’s not a blanket thing. And I came to that eventually. In our current medical system, we don’t have that doctor that we have this lifelong relationship with, and so we don’t know them as people, and how to communicate with them is so hard.
And I think they struggle in the same... it goes both ways. They struggle just as much to be like, “Is this person overreacting? Is this person telling me the whole story, or is this a stiff upper lip kinda person?” It’s almost like we need these dating forms before we step into that interaction and be like, “I like it when people do this. Red flags for me are...” Something like that would be so useful to be like, “Okay, I see how it might be more useful for me to come at this conversation from this angle or whatever.” Because people are so complicated, and then you throw in the high stakes of, “I’ve been living with this for six years, and I can barely function, and I don’t really want to live with this anymore.” You throw in all the high stakes, and you’ve waited for months for this 10-minute appointment with a specialist, and they’re in a hurry. They’ve got 17 other patients waiting for them, and there’s so many ways that communication can go sideways and not be fruitful in some way or another.
Not that every doctor needs to be like, “Here’s the problem, here’s the solution,” or whatever, but just something about it that helps you move a couple steps forward in your health journey. Whether that’s just feeling like somebody finally believed you that you’re dizzy and it’s really bad, or whatever it is.
Joshua Dolezal:
Well, there’s so much trust that’s involved in these interactions, and I never heard anyone suggest that the intake form could be like speed dating or something where you input your preferences and cut through the inefficiency or something. So that’s a new one to me. But this idea that you’re putting your life in someone’s hands essentially, because you’re desperate, you’re suffering. And there’s one scene that really struck me where, I think it’s a physical therapist maybe. You’ve got some kind of therapy that is trying to shake... They think that there’s some crystal that’s dislodged. And so it’s like moving your head back and forth really fast. It’s supposed to get this crystal. And inside you’re just thinking, “No, this is the last thing I want to do. I do not want to have my head in this person’s hand whipping back and forth. That’s gonna make me feel terrible. It’s not gonna make me feel better.” But you’re counseling yourself to just get through it. Maybe it’ll work. And that’s the position we find ourselves in when we’re in the examining room. In some ways, I think it’s unfair to think that it’s the patient’s job to somehow take responsibility for that interaction, because we really are at a disadvantage. We need the professional to be more sensitive, to be shouldering more of the communication load at times because we’re just not capable of doing it. So what was that like in that therapy? Your whole body is kinda saying, “No, this is not gonna help me,” but you do it anyway.
Rachel Weaver:
Yeah. That was early on. That was one of the things that could possibly have been causing the dizziness is called positional vertigo. A lot of people experience it, where your inner ear is like a basket, and one of the little crystals in there kind of falls out or gets angled weird. And so there’s this maneuver. It’s called the Epley maneuver, where you whip your head around and basically you throw that crystal back into the basket that it’s supposed to be in in your inner ear. And so there’s this moment where I lay down and I’m just like, “Why am I letting this person hold my head? I don’t know this person at all, and her grip is real tight on my head, and she’s about to do all these things that I know are not gonna make me better.” But I think that moment sort of encapsulates that feeling of, “Who’s in charge here? Whose knowledge counts for more?” Is it my innate knowledge that I just know this is gonna make me worse? Or is it the knowledge of the medical provider who is like, “Well, this is a diagnosis. We’re about to find out. If doing this maneuver fixes you, then you have this problem, and that’ll be great, and you’ll walk out of here not dizzy,” right? That’s a huge pull. That’s a, “All right, I’m doing it. I don’t really care. It’s probably gonna make me worse, but it’s worth...” It’s so high stakes, right? What if I could just walk out of here no longer dizzy? What if I could just go about my life from here on out? Am I gonna say no? Because I have this feeling in my body that this isn’t gonna help me.
So who do you trust, right? And I think that was happening to me a lot in a lot of these clinical interactions. Do I trust myself more or do I trust this person more? And I think society tells us to trust them more. And then there’s a lot of clinicians that are like, “Whatever you’re saying is like whatever, and what I know is solid.” Right? So there’s a lot of pressures, I think, on patients to not inherently trust what they think. But in a lot of medical interactions, that’s fine because it’s just more clear-cut. But I think once you get into this realm of a mysterious illness, or some symptom that just doesn’t show up on any test, then you’re in a situation where the clinician has all this medical knowledge, and the patient has all of this lived experience, like living in this body knowledge, and both have to work their way towards the middle where they each trust each other.
And I think if you don’t meet in that middle spot, if one person overrides that middle place, or the patient overrides the middle place to the clinician is like, “Don’t touch my head,” then sometimes the true communication and the possible solution I think lies in that middle ground, but it’s very hard for both people, right? Because you have to, as a patient, you have to submit yourself to who knows, an extra month of elevated dizziness just because somebody’s like, “Well, I’m gonna try whipping your head around,” or, “I’m gonna try this drug on you.” It says on here that you might pass out every day, but you know, that never happens. And then it happens to you, right? And there’s all sorts of things that can happen. So the patient has to trust a lot, and that’s very hard, I think.
Joshua Dolezal:
I remember having an appendectomy in the middle of the night. I admitted myself to the ER because my family was sleeping and I was up, and I just felt like something was terribly wrong and self-diagnosed with Google and drove myself to the ER. And it wasn’t too long, I was being wheeled in this operating room and having to sign all these things, and there’s like a laundry list of everything that could go wrong. And I’m looking at the ceiling thinking, “This is a routine procedure on the one hand, but this could be the last thing I see on the other hand.” How should I be responding emotionally? It’s kind of hard to know in some of those situations. But back to your initial stages when you’re trying to figure out a diagnosis. It seems to me because you were diagnosed with a kind of migraine later on, that some of these things might have actually worsened your condition. Do you look at any of the treatments that were prescribed early on and think that maybe it made the symptoms worse, or actually led to harm that set back your recovery later on?
Rachel Weaver:
I don’t know. I mean, honestly, there was a draft of this book where I was really angry. And I got that out of myself. And then really the process of redrafting and thinking very deeply about, what am I trying to say here? What am I trying to do with this book? It came sort of full circle, I think, in that I saw how frustrated both sides were, right? The medical side. So many clinicians that I saw were just trying to help. They were honestly stumped and frustrated in a similar way as I was. And they were sort of grabbing at straws, which I kinda needed people to be doing. I needed people to be like, “I don’t know, but maybe this.” And sometimes that was communicated clearly to me, and sometimes it wasn’t. Sometimes it was presented like, “I think this. You should try this.” But I think in reality, a lot of people were just like, “Let’s just do this and see if it helps.”
So I have come to have a lot of empathy for everybody involved in this whole journey, because with the time constraint of medical appointments and the ambiguity of a symptom like dizziness, I think everybody was just trying their best. But yes, I would say the whole process, I get every side effect of every drug. And no matter how many, even today still, no matter how many times I say I want to start at a low dose of whatever that thing is you think is gonna address my whatever, because I get all the side effects today, doctors are always like, “No, no, no. Nobody gets these.” And I’m like, “I do. I promise you I do.” So again, it just comes down to that communication, like who trusts who, right? But yeah, I think the accumulated trauma of so many procedures done to my body and so many people’s hands all over me to do whatever thing they were trying to do to help me just accumulated into a lot of stress and anxiety and hopelessness and a lot of things that I probably need more therapy to talk through.
But I don’t think anything was... Everything was in good faith. Everybody was trying to help. I honestly think that. I think my case frustrated a lot of people, and it really frustrated me. But I think now in the end, now that I know that this is a very central nervous system kind of problem, all those things I was doing was causing more stress. Even though I think I had to try them all to know that it wasn’t a brain tumor or a chiropractic issue or a whatever.
Joshua Dolezal:
Yeah. Well, so tell us about the diagnosis. Vestibular migraine, I think is the term that you finally get, which makes a difference, but then even takes a few more years to finally go away. So what is a vestibular migraine and how does that come about?
Rachel Weaver:
Yeah, so it turns out that while I was having these symptoms sort of parallel to when this diagnosis was first appearing in the literature, so in 2006 was the first study that came out that said, “Hey, vestibular migraine is a thing. You can have a migraine that doesn’t involve the typical migraine headache.” And that’s the year that I woke up dizzy. So I think a big part of my problem was that I was sort of progressing along with the general knowledge about this idea of vestibular migraine. I actually was at a migraine clinic for a number of years, earlier, somewhere, I don’t know what year it was, like year seven or eight or something, and finally this migraine doctor was like, “No, vestibular migraine isn’t a thing.” Because not enough people had thought it was a thing for long enough for everyone to accept that it’s a thing. So one percent of migrainers present with vestibular symptoms. So once I found a clinician who treated vestibular migraine, believed in it, I started getting better. But it was so chronic by then, I mean, it had been 10 years of every day that once you go from an episodic migrainer to a chronic migrainer, your options for treatment are limited.
Many people with migraine are able to control it with various migraine drugs. Everybody responds to different drugs, different treatments, which is part of the reason why migraine is so hard to manage and treat. So it took a number of years of going through all the standard migraine treatments, most of which helped some, not most. I should say some helped, to a degree, but I still was dizzy every day and I was dealing with a lot of side effects from all of these drugs and the procedures are Botox and nerve blocks, so I just was constantly getting shots in my face, including one right here and some over here. Anyway, lots of shots all the time.
So I was better, but I still, after years of, all right, maybe this is as good as it gets. I can manage this. I can manage my life with this. Then I got COVID, and I didn’t even get a bad case of COVID, but everything stopped working. All the pharmaceuticals that had been working, all the procedures stopped working, and my dizziness was back to the place it was before we even started down this migraine road. So I spoke with my migraine doctor at the time, and we both agreed, okay, it’s probably time to get some more... Who are the people in the country who are doing really great work with migrainers? Who are people that have some sort of reputation? So I just started getting myself on wait lists in clinics in Chicago and San Francisco, and I saw this doctor in Texas who has a good reputation for helping people that were really struggling like me with a long-term situation. And I just randomly stumbled over this researcher in Utah on the internet, and he was looking at migraine from a totally different standpoint, which is a metabolic standpoint.
He was running a clinical study in which he was looking at the relationship between glucose dysregulation and migraine. And I thought, well, no one’s really talked about that before. Maybe I should see. And so I filled out his little form on his website, and then ended up in this clinical study. And there were 250 of us chronic migrainers. Most of them had the more typical migraine presentation. But all of us experienced symptoms 15 days or more per month. And he had us all wear continuous glucose monitors, and then he looked at the data and he found there were three specific phenotypes of glucose dysregulation. All 250 of us had one of these three types of glucose dysregulation. And it’s not anything that anyone looks for in blood work. My fasting glucose is totally fine, and my A1c is fine. There’s nothing that any sort of typical glucose evaluation would pick up on. But what he found was that for chronic migrainers there’s a couple different ways that glucose is not being processed appropriately in our bodies, and that activity of the signal to send out insulin or stop sending insulin is in your hypothalamus, which is also in the same general area.
This is very layman’s terms of some very specific research, which I can send you the link to the paper if anyone is interested in the science explanation of it. But anyway, all of this dysregulation of the way glucose is processed can trigger some more stress and activity in your central nervous system. And if you are someone who has a proclivity for migraine, it can dump you into migraine. So anyway, this is all to say that the solution, which was not part of the study, he just was like, “All right, I think we should follow this epilepsy diet,” which is a very strict ketogenic diet, for three months. Calm down everybody’s glucose levels and activity, and then see if you can build back up without symptoms. And that is what the vast majority of us chose to do. And ever since I did the three-month protocol of very strict ketogenic diet and then increased to get out of ketosis back into a low-carb diet, I went from 24/7 migraine symptoms for 18 years to one to three vaguely dizzy days a month, and I just take a couple Advil and I’m fine. I’ve gotten off all the pharmaceuticals except for one, which I am gonna do next, but I haven’t gotten around to that one. It takes forever to wean yourself off drugs. Anyways, yeah.
Joshua Dolezal:
Can I ask, so “migrainer” is a term that you used kind of alongside researcher. So has this become... And that’s not part of your bio or anything, but you think of yourself as a migrainer.
Rachel Weaver:
Yeah, when I first heard it, I was like, “Oh, huh, am I a part of a group?” Do I have people? And it also sounds kind of fancy, like French or something.
Joshua Dolezal:
Marathoner, weightlifter, migrainer.
Rachel Weaver:
Yeah. Migrainer. But, you know, I think, so to answer your question, the previous one and this one together, I do definitely think of myself as a migrainer because I get all the things, right? Loud noise bothers me. Not as much anymore, but still, I’m sorta like, I like quiet, calm things, right? Lights will bother me, weather rolling in, stress. All of those things always made the dizziness worse, which is a migraine pattern. So yes, I do think of myself as a migraine person. And also the thing about getting a diagnosis is it gives you a group. It gives you people, right? I was so alone in this weird, mysterious dizziness, and suddenly I was like, “Oh, there are people that I can talk to about similar life happening in a similar way,” and that was very relieving in a lot of ways. It gave me not so much an identity but friends. I used to always ask my migraine doctor, “Can you find me some dizzy friends?” I’ve got these migraine friends now, but I need some dizzy friends, which he did, which was really good. But I do think it’s important in a medical journey to have people you can talk to about how life is unfolding for you to make it a little less lonely.
So yeah. And so now, after that clinical study, I came to realize that the secondary thing that is happening for me, so one of those three phenotypes, is something called reactive hypoglycemia, where carbs actually drive my blood sugar low, like way low, too low. And so those two things as identities actually feel good in a way that “I just am a person with this chronic illness” didn’t help me because it didn’t help me find friends, I guess. Or people I could talk to about a similar life.
Joshua Dolezal:
Well, I think of narrative. I’m not minimizing the importance of communities and having someone who understands your story because they’ve lived it is important for sure. But I wonder if writing is perhaps a way of expanding that circle, because what you do in writing is you try to take something that’s mystifying to someone else and make it feel familiar. So even if I didn’t have migraine, or I’m not a person who thinks of dizziness as part of my day-to-day, I can understand at least some of your experience through narrative, and it’s one of the reasons why storytelling builds trust. As C.S. Lewis said, “We read to know that we’re not alone.” I write for the same reason. I want to write out of my experience, out of my isolation, build a bridge, connect with someone, even if it seems like they have nothing in common with me. And so one of those moments for me, and this is crucial, I think, in every illness narrative. We get lost sometimes in the abstractions of diagnosis and treatment, and those things are disembodied. They’re not personal. And so when you’re writing a memoir, you need scenes, and you need the emotional truth of those scenes to come alive for someone to really feel that they understand illness from a human perspective.
So as a parent myself, I was just kind of blown away by this idea that you’re carrying this thing, and then you get a diagnosis and you think, “Oh, finally.” So I think you got a shot that... this guy diagnosed you with vestibular migraine and gave you a shot that almost immediately had an effect. And this is what you wrote after that first treatment. “Terrified suddenly that it wouldn’t last, I rushed back to my car. I needed to get home to hug my children, be present with them for the first time ever.” And I was just like, damn, to be present to your kids for the first time ever. That really puts it into perspective how illness estranges you from yourself and from other people around you. So it’s more than having a community that’s just people that you can commiserate with, I think we need to expand our community through narrative as well. That was a scene that did that for me.
Rachel Weaver:
Yeah, that’s the greatest thing about writing, I think, and reading. You can experience something through a narrator, either fiction or nonfiction, that you never would have thought of yourself or you didn’t understand prior to reading it, right? And I really set out to write this book using all those tools of fiction, not the part where you make stuff up, but the scene work and writing from deep inside the experience of the character, in this case, the younger me, so that... Because I really wanted people to understand what it is to live with some really tough chronic illness, because so many people in the world are living that way, and we don’t know it. You don’t know it. In all those years, I think people would interact with me, and they would just think, “Oh, she’s probably really tired,” or, “She’s just thinking about other things or whatever.” Everybody around us, I think, is living with something hard, but I think chronic illness is a pretty common thing that people we interact with really are dealing with in a big way.
And I wanted this book to name it as specifically as possible, for those people that have a hard time communicating that they are living with something like this to the people that love them, but then also for those people that care about them to understand their experience better, at a deeper level, at a more visceral level. Because I think you can explain that, yes, I live with this, here’s my symptoms, whatever, and you can explain it in a way that helps the person you’re talking to understand it cognitively, but it’s narrative that makes it land in the body, right?
Joshua Dolezal:
Well, neuroscientists actually say that when you describe something, use sensory detail to paint that scene, you activate the same part of the brain that would be activated if you were literally doing it. So one neuroscientist has this beautiful metaphor for it, that when you evoke your experience well through art, through prose or poetry, that your imagination becomes the floor of its happening. It’s real. Even if you’re imagining it, it still becomes physically real to you, in the way that it would if you were living through it.
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If you were listening to our conversation live, you know we had some technical difficulties, so I’ll need to wrap up the episode here.
To learn more about Rachel’s writing and to buy her books, check out rachelweaver.net.
Just a reminder that a few months ago I decided not to paywall this show, and some of you choose to support it anyway, which keeps it free for everyone. So thank you to everyone who’s a supporter.
Next time I’ll speak with Danielle Ofri, author of Singular Intimacies, the first medical memoir I ever read and still one of my favorites. She’s also the author of six other books. Dr. Ofri spoke with one of my first medical humanities courses by conference call nearly 30 years ago, and we’ve kept in touch over the years as she’s become one of the leading doctor writers of our time. Among her many accomplishments, Danielle is the founder and editor-in-chief of the Bellevue Literary Review, which is celebrating its 25th anniversary this year.
So that’s the thing not named for today. Until next time.
The Recovering Academic explores the messy intersections of medicine, culture, and storytelling. I write three new essays a month, hold live interviews, and produce a podcast about the things medicine leaves unnamed. It’s all free to read, and it stays free because readers choose to support it. I also give 5% of what I earn here to local charities.
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